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personal project \\ six people twelve times \\ 07.10

July is going to be pretty hard to talk about, seeing as how I can hardly remember what happened now. What day is it again?

It was the coldest July we have had in southern California in 100 years. I am not complaining.

We took a vacation, but we didn’t go very far. (This photo was taken on the ground of the Orange County fair, after all of us took a turn in a photo booth.) I remember reading in a magazine years ago, about a great way to save money while going on vacation. The people in the article – they called it a “Staycation” and spent time at home and in their city acting like tourists. It was the perfect fit for us homebodies who live in an area full of things to do. We thought it would be perfect for Mckenna, who doesn’t like flying or traveling. And it forced us to get out and do the things we have always said we would do. Like rent a boat, see a play in Balboa Park, go to the local water park, spend a day in Mission Beach, take the kids to a concert, do a food crawl at the OC Fair…

All in all the week we spent together was full of good memories, but it really brought to the forefront something else that is hard to talk about. Mckenna. I don’t often talk about how hard it is to parent a child like her. I choose to focus on the good things, and each good thing is such a celebration that it is easy not to tell the whole truth about our life with her.

But…

Mckenna doesn’t like doing things. Mckenna doesn’t like to be in, what are to her, stressful out of the norm situations. Like vacations. Mckenna would be happiest alone in our house, with no noise except for the noise she creates. With full control of what she wants to eat and when, what she wants to do and when, and the remote control. Her natural tendencies lean toward an isolated hermit in the middle of nowhere. With a Target for dollar stop shopping. That is always empty, except for one cashier and her. Because of this, Mckenna tends to impede on the sense of ease and fun during a vacation, and what really became clear to me on this one is that we need help. What really became clear to me on this one is that my burning desire to have my family unit always together, may be actually tearing us apart.

Now that the younger three have surpassed her emotionally, we are in this impossible place. Parents to a child like Mckenna, but also parents to three typical children like Drew, Nathan, and Anna. They both need us equally as desperately. And as I stare, slightly stubbornly, down the barrel of parenting an adult with special needs, and the rest of my life, I start panicking. I don’t know what this is supposed to look like. I don’t know if I can do this. I certainly know I don’t want to be doing it alone anymore. It isn’t fair to the rest of them. I focus so much of my mothering time and energy on Mckenna, and the rest of them are so easy in comparison, that they get the last bits of me. The tired worn down please just make this easy for me bits of me. I don’t want that for them. Yet, I don’t know how to make a safe place for all of them, while giving each of them what they need. I have thought for so long that I can handle this. That I can be this mother to all of them. That I can make Mckenna happy or healed all while giving the others everything they need. And I can’t. I am feeling my limits crash into me all the while fighting them.

The confusing thing with Mckenna is that there are moments of astonishing peace and joy for her, like when she sat at the front of the boat like a mermaid statue and smiled for an hour as the ocean splashed her face and the boat bobbed in the water, or when we walked out of the Train concert and she said she loved concerts and the next one she wanted to go to was Alicia Keys. Those are the moments that hold me over through the bad ones and make me sane, but they also tease me into believing that she can have MORE moments like that, if only I try harder. If only I give more. If only I fix her.

And I can’t. She is not “fix-able”. Whatever good moments she has, are most likely nothing to do with me. Just like whatever bad moments she has, are most likely nothing to do with me. They just are. They just exist for whatever reason the synapses in her brain allow them to exist in that moment. She is unexplainable and impossible to solve. Mckenna is not free. She is locked up and hidden from me most of her days and most of her life. Those moments that I cling to are few and far between, and yet I kill myself everyday to try and get more of them.

What I saw on our staycation broke my heart. I saw the five us of, wanting desperately to have the kind of time “normal” families can have, time to be free, and failing. And in that failing, feeling completely broken down in moments when she was broken down. And guilty for feeling that way. The flow of the vacation stops and everyone has to stop being who they are, to fit into the box Mckenna needs in order to function and feel less stressed. We are good at it. They are better – they have been doing it all of their lives. I saw my other three children sick to death of people staring at us, the curious public the unintended paparazzi of our outings. Usually our outings are broken up – we spend a lot of time at home in between recuperating. But with several days outside linked together, the staring and the issues involved became overwhelming. Everyone stares. Not just children. Adults, groups of people, will whisper and point and think I don’t notice. I just want to be invisible. For me, getting stared at is especially hard. I think Anna hates it almost as much as me. Mckenna is the only one who doesn’t notice. She thankfully doesn’t have to feel that pain, but the rest of us do.

One of the reasons I fight my limits is because unless we are all together, I feel like we are not experiencing things to the fullest. If Mckenna stays home, I feel weird, off kilter, and guilty. I know that even if there are three hours of hell, she may have one second of bliss in whatever we are doing, and how can I deny her that? This is how we have ALWAYS operated. “Ohana means family – nobody gets left behind!” It is an idea Jeff and I have always had – and our family has flourished in it a lot of the time. But things are changing. Like I said – the other three have surpassed her emotionally. A lot of families have that, with older children and maybe a surprise younger sibling. But it isn’t like having a younger sibling who is a toddler. Because Kenna will never grow out of this. I don’t want them to grow up resenting us, or her, for what we did when we thought it was what needed to be done.

And so I am here, trying to figure out the best way possible to go forward for our family. Thinking of Mckenna. Of Drew, Nate, and Anna. Thinking of Jeff and I. How can we make this new time in our lives work in the way it has worked in the past? Maybe that means getting daily in home help. Maybe that means bringing an aide along with us to care for Mckenna so that we can focus more on the other three. Maybe that means leaving her at home while we do the things “normal” families get to do, with no one staring at us, and not having to mold into her  box, just getting to be free of the locked up parts of her brain for awhile. I know for certain, it means dropping a lot of the preconceived notions I have had for her life and ours.

I am scared. I am uncertain. I am tired. I have cried a lot this month. I wish more than anything for my family to be able to be together, all the time. But what I want even more is for each of them to get exactly what they need from me.

And yet, there are so many reasons for us to be at ease, and happy, and there is a sweet escape in that. We are in love, so in love. We have this great big family. They mean everything to us. We like who they are. It is summertime, and we have no major responsibilities. We get to take them to basketball camp and surf camp and horse camp. We get to watch them explore the ocean in a boat, their chins hardly poking out above life jackets. We get moments of extreme lucidity from Mckenna, where she asks us how to smile. We get to hold hands and scream out songs we sing together in our car, outside at a live concert with twinkling lights and cell phones held up in the sky. We get to nudge to the front of the crowd to show Anna the newborn piglets and listen to her squeal just like them. We get to stay up late in our hotel room, and have a midnight dinner at Denny’s. We get to enjoy possibly one of the last summer’s that Drew will really want to spend time with us instead of his friends. We get to watch him spread his wings. We get to float on our backs in the pool, while holding hands with Nathan, staring up at the clouds. We get to cuddle him at night, because he asks every single night for one of us to cuddle him. We get to plant strawberry plants together in wooden containers in the backyard.

We get to simmer in the life we have made for ourselves, with all the good and bad.

We are the only ones who fully understand what it is like to live with Mckenna. We have each other to lean on. And most of the time, that is enough.

xo

Tara

Rach - I love you all so much.

Bonnie Berry - My heart aches for you. I wish I had the answer so that I could wrap it up in a box , tie it with a bow and give it to you. But as you know there is no easy answer, only feeling your way through the dark. Just know that you are not alone, even though I am sure it often feels that way.

Erin - Tara, thank you for being brave. Brave in parenting. Brave in love. And, most of all, brave enough to share this. You aren't alone. I hope you can feel love and support and strength. Your children are so unbelievably lucky to have you. You may be struggling...but your are TRYING. That counts so much.

angela - wishing i, too, had an answer for you. i'm not one to comment often, but i follow your talent and your family and am constantly in awe of your open heart. it shows not only in your talent but also in your family. i don't have any answers, but i send your lots of {{{{hugs}}}} and support from one mom to another and a hope that the {answers} will eventually come.

cathy - I don't know you except through your blog but I just read your utterly selfless honest words & they made me cry. You & Jeff are brave, loving parents. I am the mother of 3 healthy boys & want to have another child & your honesty touched me. I hope to never have to go through something this hard but I pray for you to have the strength to deal with your daughter & hope that when I come across hard times with my children I will be as strong as you. My words can't help you but I thank you for sharing & will keep your family in my thoughts!

Shari Anderson - I wish I could give you a hug....just one that says, "it's okay to feel and experience, to fail and to succeed, to just be"

Alisha - You are amazing and strong and no one better could have been picked for this job. never doubt your decisions, you have always done what's best for your family and no matter what happens you will continue to do that. LOVE YOU!

Stephanie - I don't always comment, but I DO always pop over because I love your talent, and your joy for life, and for your family. And I wish I had an answer for you - because I can tell this was hard to even write. But I also get a sense, from your posts here, that MOST of the time, you do hold it all together. And I can also tell that you always try. We do our best, and we can't ask anymore of ourselves. Hold on to the love, accept the help you need, maybe speak to a counselor to work out solutions in a guilt free way. Yes, your child needs you more than most. But you have given her these blissful moments and bless your sweet heart for that. Your other kids may occasionally want you more, but I am sure they know you love them all and did whatever you could to make it right. So my only answer at this time is, keep leading with your heart - I can tell it's a good one and it won't lead you astray. And in the meantime, I'll say a little prayer that you find the strength and the answers that you need. Hang in there, and in the darkest moments, remember that bliss.

Kami - I don't think you should feel guilty about getting extra help. If you choose the right person, they will start to feel like part of your family. My friend has 2 out of 4 children with special needs & finding someone to help her has changed her life. The person can go places with you some of the time, or take McKenna special places she would love, while you take the other kids somewhere else. It may also give you a break emotionally. Feeling guilty is such a heavy burden & you're a great mom.

Sarah B - I have a daughter with special needs. She is only 5 but I struggle with the EXACT same feelings you've described here. Being her momma is such. hard. work. You are so articulate and gifted. Thank you for being so honest. I think that talking about not loving every aspect of parenthood, yet still of course our kids, is taboo. Your family, your photography, your honesty, you inspire me. Thanks.

Candice {The Beautiful Mess} - wow. thank you for being so open. definitely thinking of you and your family with the tough choices that lie ahead.

Nancy - A read it. A mulled it over. I went away. I read it again. I'm not sure. I have a special needs child, adopted at 12 months, who is now 3 years old. The uncertainly is brutal. I'm not sure what her future and her world will offer. We claw and hang on the good moments for without them, what would there be? Thanks you so much for the transparency. It's good not to be alone. The love it good. It is enough. Just a reguar ol' soccer mom, mama of 6, and photo enthusiast, who loves to see your visions and dreams one day to be in front of your lens, nancy

amy b - friend, i love you.

amy tangerine - sending huge hugs and love.

cathy - This is beautiful Tara. I love you, mama.

BRandi in Ohio - Hi there, I check your blog often (found it off my sisters blog) and I enjoy your photos and stories. Your post today touched my heart. I am very fortunate to have two healthy happy girls but I know that is not always the case. I have been a cashier in the same store for 15 years, and there have been times when parents have come through with their kids and the kids may be making noises or feeling over stimulated. That is when I remind myself and the others I work with "that may be their child's best day so don't judge them because you don't know the entire story you just read a paragraph". I wish for you and your family to have peace in your choices and lots more magical times and next time someone points...trying pointing back at them whisper and wink...maybe they will get the hint...maybe not but it's worth a try ; ) ---hugs

Kim - I wish I knew what to say...So I'm sending you lots of hugs from one side of the US to the other :) xo

Jennifer Henson - Wow. You opened your heart and took a photo... Thank you for sharing. Many hugs.

suetreiber - Being a woman and mom is hard enough some days: I can't imagine what it would be to raise a special needs child. It sounds to me like you and your family are doing a FANTASTIC job, especially you, Tara. Keep up the good work and we will be here to listen when you need a friend!

robyn - I feel you, to a much lesser extent, but I feel you. My oldest has autism, and I struggle daily with the 'what ifs...' and the 'but what abouts...'. And it sucks. And it's not fair. And I rail against my own heart, because I feel like I should be able to do it better. My little one has lost so much of me, and it shows. Oh, how it shows. And then comes the guilt. I cry. Because I haven't been enough to either of them, or myself. So, while I don't know exactly how you feel, we are in the same boat. A different part of the boat, maybe...but the same boat. I just wish I knew where we are sailing to.

stacy benintendi - i love you! i would love to have all of the answers for you! i really would. when i read your words i kept thinking, "that is EXACTLY how i think i would feel" you are so great! i know you will find the best way to "fix" this situation. you have some great ideas on how to do that. now you just need to be brave enough to jump in and try it out and you-are-brave i know you can do it! :)

Jeanette LeBlanc - You may be scared. You may be uncertain. You may be very, very tired. But you are so beautiful, so open and so, so, so very full of grace. You are also an inspiration to those of us who need to open, to be vulnerable, to tell a little more truth to ourselves and others. My heart both aches and soars for you, and for Mckenna and the rest of the family.

Shelby Austin - You are an incredible mom. Not everyone would have the insight to see that how "they thought it should be" might not be the way it should be. That is a hard thing to accept. Good luck with everything. Help is good.

Jan - You are an amazing mom and wife, the strength of your family. I want to share with you something a wise friend of mine taught me--guilt should only EVER be associated with sin. No matter what your (or my) definition of "sin" is, wanting the best possible lives for each of your children, both together as a family unit and individually, is definitely NOT sin. Let that weight go as you search for solutions for all your children. It's not helping you to find answers and it's sucking valuable energy and emotions out of you. You'll find ways that will work for you, just release the guilt.

DrewB - You are an amazing mother, Tara. I really hope you know that.

kerri - your children are so VERY lucky to have you as their role model in life. your example, strength and honesty is something i admire greatly. (as well as your creativity) as there is no real answer that anyone can give you...i hope you can find what will work for all of you...give you happiness. thank you for opening up to all of us.

Marianne - A friend of mine is having 4 kids. Number 3, a boy, has special needs but it took several years before my friend was ready to accept they needed help. What worked for them was for their son to have a "second family" which he goes to every second weekend. For a long time she felt ashamed to do it - but looking back this has been so good for their family. Their son always enjoy his weekends at his second home - and the rest of their family gets to have some "normal" time together. This gives them all a lot of extra energy to actually love and appreciate the time they do spend together, all of them. I do not know what will work for you and your family. But please, please do not feel quilty for getting some help. I am sure you will find out you are actually giving a gift both to Mckenna and to the rest of your kids by getting help. Many thoughts from me to you :-)

melissa - Love the photo booth pics!

kim - big, BIG love to you.

Nina - Tara - I've been an admirer of your blog for a while now and I have to say this post brought me to tears. I do not have a special needs child so I can't say I can relate to your feelings, but something that did come to mind is how awesome of a mom you are. The fact that you even think about these things, that you even stress about them shows how awesome of a mom you are. Okay, so maybe awesome isn't the right word, but how "right" you are for those 4 kids, as different as they are. You are an inspiration. And for people who stare, let them stare. You guys are who they are and you can't change that. Does it really matter what they think? NOPE. Anyway, love your blog. Love your pictures. Love your philosophy.

Marlies - Wow Tara, Your journaling is amazing, heartfelt and honest. I wish you all the strength in the world and know you have a good heart, so you WILL make a good decision for you and your family. Have faith, Marlies

Amanda - A friend of mine sent me the link to this blog a few minutes ago. Wow did it hit so close to home. I'm the mom of a 7 year old autistic boy named Aaron and I too am a photographer. All I would have to do is change Mckenna's name to Aarons to have an identical story. We went out last weekend. We were tired of always being home to keep Aaron in a somewhat familiar and contained environment. We drove to a fun oceanside town in Oregon and we literally had to drag him up the crowded sidewalk. People stared and pointed. It's rough. REALLY rough. I have felt exactly the same way you do-- so uncertain of the future, especially with the prospect of parenting an adult child. And guilty that we can't do normal things that normal families can do-- and all the 'if only's' that go thru your mind. Your words touched me because they were so honest and true. You aren't alone and we will be praying for your family. Amanda

Katrina Grabowski - {{{HUGS}}} You are a beautiful soul and such a loving mother. The love for all of your children is so clear each and everyday. Just being able to sit down and express your self in these words shows us how brave you are. I don't think there is a right answer only you and your family can find these answers together. You are such an inspiration thank you for sharing your soul. XOXO

Alicia - Your words capture exactly how I feel. Although my daughter's special needs are different, I feel the same about my other kids and the way we walk on eggshells in public to avoid the meltdowns etc. It's nice to know that even when we feel very alone, there are others who are feeling the same. Thank you for your raw honesty. I can't wait to meet you. ♥

Myra - I read your blog and rejoice when you're happy and sympathize when you're not. I applaud your bravery for talking about your unique, beautiful family. All mothers should care as much as you do. Thank you for sharing your story.

rebecca - I never know what to say to posts like these, the bare ones. I can only send you the good ripples and vibrations I know are out there and hope they give you the feeling of being ok. You are stronger than you think you are, and your strength is a beautiful example. Thank you.

Nicole - no matter how you move forward, the fact that you care so much and love so much will guide you to the right decision. although it's explaining a tough time in your life, this is just so beautiful. i don't know you, but i know you will find your way through this.

Katie - What a beautiful post. I just wanted to share my experience with you. I grew up in the same position as your 3 children... with an autistic brother. It seems as though we had many of the same 'growing pains' you are feeling now. He was number 4 of 7 kids... so right in the middle. There are 2 sides of this I think. First off, I think it is good to make sacrifices to include a special needs sibling. I think I learned patience, service, and that I am not the only person in the world (a tough concept for a teenager)... along with a lot of other things. The experience has made me a better person. However, when we realized that trying to make him do everything with us when he would rather be home alone in his comfort zone was not benefitting him or us things really got better. For the first little while it always felt like there was a big hole, but as we realized that we could be free to be us and he was perfectly happy being home it got easier. We realized that we were trying to force him to be something he wasn't and enjoy doing things that he didn't enjoy and that made him uncomfortable and that wasn't fair. It was really just serving our need to feel like we were doing the right thing, or to not feel guilty for leaving him out. Our family gatherings and outings (even though we are all adults now) are so much more fun, relaxed and comfortable now. We try to do most of our gathering at my parents home (where he lives) so he can come for a little bit and then to enjoy is privacy when he is ready. He just skips most outings. But, in an effort to stay connected to him, we do as much one on one with him as we can. He LOVES basketball so we go to the local college basketball games with him a couple times a week in the winter. He is always thrilled and loves being with you. Anyway, I have rambled... and I still have so much more I could say on the subject, but I guess my main point is that you are doing great. What a wonderful family you have.

Amy J. - Feelin your heartache friend... SO wish I had an answer for you. Though I don't live in your situation, as a mama, I surely can relate to how torn you are. You are an excellent mother...an excellent person. If it didn't hurt this bad, it wouldn't be as important...that's what I always tell my girls. Love brings lots and lots of heartache, but without you feel nothing. I hope you find some answers for all of you. Hugs to Mckenna. The photo of her smiling has brought a lump to my throat several times since I saw it, just when I think of it and how it must have made you feel. Hugs from a cyber friend. I have faith in you guys.

Hege - Thank you so much for sharing this with us. I can find much of me in what your write, in fact I think most mothers can. And you put it into words so perfectly. I truly believe that when we are happy, our children are happy. Dont let the guilt consume you Tara, let it go and breath through your heart. There you will find all the answers you need.

Krysta - Big tulip tears honey. Though it all, the ups and downs, the good and bad, the trying and the true, there is one thing I know...each and every one of your children feels LOVED. Above all else in this world, that is the one constant that prevails over anything else...and you do such a remarkable job at it. You are so beautiful to me. Love you. xo

Lauren - Wow. This was such an incredible post, so full of honesty and love and real life. It seems as though everyone has said it better before me, but I figure there's no such thing as too much support. It's easy to see how incredible of a mom you are to your kids, and that your love and wish for the best for them will help you make the right decisions. Thank you so much for sharing, you truly are an inspiration.

lori t in az - Really moving post. I work in a clinic with special needs children and listen to parents speak about their struggles in public as well as the siblings struggles. Stories of trying to see a movie together as a family, being dropped off at school but asking if the special needs child could stay in the car. There are no answers for young children but there is research out there that shows that siblings with special needs struggle but they wouldn't change their worlds if given the chance. They are better people/adults for their siblings. It is hard but they are just as proud of their family members. You'll figure out a happy medium for everyone. Maybe just spending alone time with each one if possible. Same you would do with any child in a large family. You are the photographer, look at your pictures, your family is happy.

Shari Schwarz - Thanks for being honest. My heart goes out to you, Tara. I have a child who has moments of lucidity...that's how I describe it, too, and who I have learned cannot be "fixed". It's hard. I have learned to focus on his strengths, too, and celebrate those times when he connects with life around him. I don't have any answers, of course, but I think it's great that you are being so honest with yourself and your family. It's one of the greatest gifts you can give them....and all of us reading. Hang in there, girl. :) XO Shari

Lauren - Your family is beautiful. It is so very easy to see the genuine love that you possess for each other. This post is lovely, Tara. It is raw and truthful. I can see that you are a wonderful mother. Never doubt it.

Michelle A - Thank you for sharing so completely. You and your family are amazing and will find a way through. And you will do it together. Big hugs to all!

Kim Hacking - I loved reading the comments from this post and especially Katie's perspective about her autistic brother. Just another friend offering my love and support to you at this time. You are my hero!

Sherri L Couture - Tara you are amazing. Sending you lots of prayers.

Heidi - When I dont have the answers and dont have things all figured out, I usually leave things in Gods hands. When you do, the answers will slowly come by themselves and things will get figured out. All you can do is what you are doing now and that is to love your children, and where there is love there can be no guilt.

Trude - Oh, T. Big hugs all around. Maybe hand her a camera and she'll latch onto it like her mama? :) All kidding aside, though, I know you guys will find out what works best. Even if it means a few bad days to get to the good, it'll be worth it. <3

Brenda - There is no easy way to go about things like this. I think that if outings aren't her thing and staying home with someone (like a grandparent or an aide) would make her happier than being at the fair, you should be able to go with the rest of your family. Don't see it as leaving her behind; see it as giving everyone what they want from that day. I'm thankful that McKenna doesn't notice the people staring because that would only make it worse, but I'm also sorry that the rest of you notice. Personally, I would probably tell people off and suggest they go deal with their *actual* dysfunctional families instead of being rude to you and your wonderful one. I totally understand how the ohana concept powers your interactions. Sometimes, it's the only way my family can deal with me when I get overstimulated and launch into a full-on freak-out. I'll leave you with the thought that my grandma always used: "fair is when everyone GETS WHAT THEY NEED." Try not to feel guilty if your entire family isn't always together at every moment. The quality interactions and tailoring to individual interests will only make it more worthwhile.

dawny dee - your posts are as beautiful in their raw honesty as some of your images. you will find a way thru this, a way that works for you and your family. there is no right and wrong here - just follow your heart. know you're not alone. and know that you - and the rest of your spirited family - are loved deeply but people you've never met.

Emma - Tara, regardless of anything else, wherever this journey takes you, NEVER feel like a failure. You are incredibly inspiring, and it is so obvious how much beauty and life you give to ALL the members of your family. Thank you for bringing out into the open what so many would hide. I am so sorry that people stare; that breaks my heart. xo

corinne delis - Tara, I feel you, I do and it is hard when all you ever did is trying to be the best mom you can be and by doing that you put yourselve in the last place, because what is more important than our kids right? Well Maybe, just maybe, if we can open up and accept the help that is out there our life and the life off our whole family can cange fot the better, room to breath again, to smile again. It is not easy, not easy at all. Big hug!

mommymae - such a huge post for you to write, tara, i'm sure. while our family is different from yours, we often have to leave people at home. sometimes a nap is need right then, so the baby stays home while the rest of the family enjoys an outing. sometimes, my twins just want some mama time. sometimes the boy just wants to be with daddy - just the boys. sometimes your kids want to have you 2 to themselves and you all deserve it. even mckenna. she deserves what is best for her. (i do hope you realize this isn't preachy, but supportive words for you.) thinking of you all.

Suzelle - God truly did the right thing giving Mc kenna to you and your precious family. You are all so special :)

Kelly - What beautiful transparency! Thank you for being vulnerable, for sharing your heart, for a deeper insight into your family! I don't know you except for what you choose to put on your blog but my mommy's heart broke for you as I was reading this. It also soared for McKenna too, to be blessed with a mother who wrestles with the tough stuff to make her everyday better.

jamie - you are such a beautiful person tara. i don't know you, but it is just.so.clear to me that you will get through this. if only because everything you are doing for every member of your family comes from such intense and pure love. you are not absent. you are not indifferent. i can't even imagine how hard it must be to manage something like this, but it seems like you have an incredible support system, and I wish you so much luck, and happiness. xx

Holly - I agree with so many of these comments. My only advice, that you make take or leave, is to include your other children in the decision. Let them express their feelings too. (Do they feel "neglected" in the way you feel you treat them? Would they like to go on adventures without McKenna sometimes?) Don't let your heart and mind make their decisions. Find something that will work for all of you, though it will probably be hard in it's own way no matter what is decided.

Shanna - Way to make a lady tear up! You are an amazing mom, amazing family! Everyone in your life is so blessed to be touched by your presence. I know its hard to break out of what you picture for your family, but good for you for being willing to do so. xxo

Jacqueline - This is so none of my business - but there is help out there. You can transition to new ways of being together. I am sure that somewhere (maybe start with school) there are resources available to you where everyone can have a few minutes of total happiness. Go get help! - Jacqueline, just a mom to a kid who wants other mom's to find the resources they need to survive this crazy life

mia - tara ... what an extraordinary post. although i don't have a special needs child of my own, i watch a great friend struggle with an autistic son. the middle of 3 kids. she tries and tries to keep it "normal" (WHATEVER that is) for the other two, but their life just isn't "normal". someone who commented here said that when asked, siblings of special needs kids wouldn't change their lives, and i believe that is true. your other 3 kids will develop a level of patience and compassion and love and acceptance for other people that most of us aren't blessed with. but the fact that you're struggling means that you're paying attention and you want to do well by all of the members of your family, and that is worth millions. i don't think there is an answer. maybe there isn't supposed to be. maybe life is all about living the questions. you and your family are in my prayers.

Pol - *hugs* nothing else I can offer other than you are in my thoughts and my prayers.

angela auclair - tara - you gave me goosebumps and tears and hope. for you and your lovely, beautiful family. you are wonderful parents ( and those moments of crying and questioning only confirm this ) and will make the decisions that are best for your family. it may be some combination of together and apart, but always with the best for your family at the root of the decision. they will be the right decisions for you guys. hugs. and love.

Pam K - This is a thought I had as I read your post. When you say you just want the three of your kids to be able to be free and to be who they really are, I think that is a great way to look at McKenna too. As you said it may mean adjusting your preconceived ideas of her life and your life as a family. How we measure happiness seems to be different than how she finds it. I don't mean to act like I understand your situation, because I am not a parent of a child with a disability. I do get it when you say you feel guilty for having family time without her. It took me a long time to figure out I could do something without my kids and enjoy it too. Maybe McKenna is spreading her wings too (just like Drew). Pushing for her time to be the way she wants to be too. Please don't take my comments as preachy or advice. I hope you find a balance for the needs of each and the whole.

tara pollard pakosta - Dear Tara, My heart broke for you as I read this post. I am so sorry you have to go through this with your family. If I lived there, closer to you, I would come and help you with Mckenna. I wish so badly that I could help. I think you are an extraordinary mom, your children are all loved, know who they are and beautiful. You are doing a wonderful job! I think you should get the help you need, so that you can have those outings with the other 3, that would be wonderful for you and Mckenna would be happy too, to be at home and do what she wants to do. I wish you all the best with everything. I have no idea what it must be like for you. I know that I have my hard moments with my daughter, Savannah who is pretty much OCD (never been diagnosed, but I just know it) and those moments are VERY hard for me, so I can maybe multiply that by a million to know what you go through. I would be insane and I really admire how you have always taken great care of your beautiful girl! hugs, prayers and love for you. xoxoxo tara

Yolanda - That was so raw and gorgeous. You are an artist as much on this page, with the written word, as you are behind the lens. And with that much intuition and deep insight, it is no wonder. if only every child could have a mother whose eyes are as open as yours are, to see them and their needs so clearly, and to then do whatever it takes to meet them. It’s admirable. And truly inspiring.

patty - Dear Tara, I dont know you personally, (been following for a couple of years) but just from your thoughtful writing and amazingly fun, funny and thoughtful photos, its like you see the inside of people. And from the sounds of it, it strips you bare. McKenna is so lucky to have you for a mom, as are your other kids. Thank you for being all out there. Im sitting here supporting you from cyberspace. You are doing a great job and the right thing (even if it is the hardest thing) for her, and the rest of you. As usual -- is my guess -- you will think it out and do it in a way that keeps those moments going for her even if you arent there for all of them (that's part of the letting go of kids as they grow up right?) Sending you warm vibes and support, Patty

courtney - you are beautiful. your post brought me to tears. you are absolutely inspiring and your wisdom and strength are amazing. i cannot imagine the daily joy and pain that you feel out of deep love for mckenna. you are an amazing mother and i am very inspired by who you are for your children. and your children are beyond blessed to have you.

bentley - Oh Tara, where to begin? All I know is that you are an amazing mother and I can't imagine how hard this is for you. I know you will come to the right conclusion re: what is best for you all as a family and for McKenna. I think you have to cater to both sides and meet in the middle sometimes. If that means allowing McKenna to stay at home more often, where she seems to be happiest, don't beat yourself up over it. Maybe have days were you lounge (which I know you do), days where you take McKenna, days where you or Jeff stay with McKenna or do McKenna things and days when you dont. I know you know this better than I do and who am I to try and give any advice but when you go to sleep at night and another day has come to an end, I hope you know you are a wonderful mother and those 4 adorable sure are lucky. XO

ria - I have typed and deleted 3 times already. I wish I knew the perfect thing to say. I can only say I love you and you are in my thoughts.

Shannon - mother thoughts: "the most important thing she'd learned over the years was that there was no way to be a perfect mother and a million ways to be a good one." by Jill Churchill. I hope this helps.

michelle - I want to offer you some words. But I keep coming up woefully short. That post brought tears to my eyes and I have so much love for you (and your family). I only know you through the blog... but posts like these make me feel like I DO know you. ;) Whatever you end up doing I know it will be right for everyone because your heart and motivation for making changes is right. {{{hugs}}}

sonja - Tara, I think Katie above has some wise words; more than most of us can share, because she has lived a similar life as a sibling to a child with special needs. If McKenna is happiest at home there may be times you need to allow yourself to feel free to leave her. And of course still go and do the things that she loves with her whenever you can. What a hard place you are in and there are no easy answers. But you love her and your family so much; be confident that you will figure out the balance because love will conquer all.

Bree - the most beautiful post I have ever read on having a special needs child.

Randi - Your honesty is beautiful, Tara, and I pray that you will find all the answers you need and that your family will flourish, however that looks.

Sara S - My heart really goes out to you! What a hard place to be put in, it makes my heart hurt for you. I agree with the others that finding an aide, a friend, for McKenna would be a good compromise for everyone. She can have what she would like the most, a house to herself (and I think everyone likes that once in a while!) while you can spend time with the rest of your family doing things that she cannot enjoy. You all will come home in good spirits, refreshed. Maybe you could show her photos or bring her home something she might like such as a dessert or a seashell. Then maybe other times you can all go as a family for short trips to things like concerts that she does enjoy. I think the more relaxed you are, the more you can give her and the other children. Finding a friend for McKenna doesn't make you a bad parent, it means you're willing to do what is in everyone's best interest. Don't feel guilty and don't let others judge you for the small glimpse they see. You obviously love all of your children very much!

Irene - As the mom of 3 little girls - one of which is severely handicapped. I know exactly how you feel. Our special daughter is non verbal, non mobile and tube fed. But she is animated, sweet, active and definitely knows what she does and does not want. Sometimes she will happily accompany us on a day out. Other days she will scream and cry and make a scene while trying our patience until we finally just give up and go home. For one, don't feel guilty about taking attention away from your other kids. I actually think my 2 other girls are better people because of their special sister. They realize they are important and special, but they also know the world doesn't revolve around them. They also appreciate and understand that there are many "different" people in our world. You don't need to feel sorry for them, or to be scared of them. They are just different and that is what makes the world go round. And, secondly, don't feel guilty if you do decide to leave McKenna home with a caregiver to be able to enjoy outings with the rest of your family. We have nurses that provide respite care for our special daughter. I initially felt guilty leaving her to go and do fun things with the other girls. But I have come to realize that she is honestly happier at home. Not in the hot sun or the wind or in the loud, unfamiliar surroundings. She likes familiarity. She likes her music, her movies, her toys and her time rolling around the floor. And our nurses just spoil her and love her and take her for quiet walks around the block (the only outing she really enjoys). It is all good. Take care, and try not to think too much about what the future holds (we try not to). Take it day by day, it will all work out for the best. Irene

Ali - Loving you so, so much Tara.

karen - Homeopathy. The things I have seen it do. Beyond all words and images. I admire your clarity of emotion and the openness to share. All my love to you and your family what special people.

Amy Reynolds - Tara - I am you and your words are mine. I am the mother of 4, with 3 typical children and one daughter who is autistic... I am also a photographer with a small downtown studio in our hometown. As a family we have self adjusted and I see the other children sacrifice in areas where they should not, but they do - we all do because of our child, their sister - This post is my words - just the names have been changed - we recently (6 days ago) came home from a vacation and I can relate on everything you said. I love your heart! You are encouraging and supportive - I feel those feelings and have not an answer one.. But we do what we do because we love and love deeply! I know our paths are someday going to cross - So in the meantime - you are awesome and may God give you peace and direction! Amy (LOVE LOVE your work and this is what connects me even more)

KellyW - Your bravery and honesty is inspiring. You'll figure it all out - when you keep the main thing the main thing, you'll find the right solutions for your family. What works and is right for today is not always the answer for tomorrow. :)

Jamie - I feel (and know others here do, too) so honored and lucky to have heard you share this glimpse into the life of your family. Thank you for trusting us, Tara. Perhaps somehow, someone will have a springboard idea for you to jump off of and take steps towards changing your family's way of doing things... we're always changing, compromising, giving & taking. Hang in there and know that your & yours are loved.

Susie - My heart goes out to you and your family. I can only imagine the options and decisions you face. Thank you for giving us a glimpse - beautifully written - of your life and its challenges.

Zaida - I don't have any brilliant insights. And even though I don't know you I will say that the fact that you feel all these things instead of denying them makes you so fabulously honest and real. I am praying for you and your family. Praying that you find a path that will lead you closer to what will make your family more harmonious while still respecting everyone's right to be free and happy.

Sarah - Thank you so much for sharing this Tara. I don't know you, but I can tell you that you are definitely NOT alone. I have three children, one of whom (still undiagnosed) is likely autistic, and I can identify with SO much of what you wrote here. She is only 2, but I feel how you feel. I wonder about our future, and I think about all of the things you are talking about. I wonder if this will be us, and how we will cope. It helps to hear someone else talk about not only the good of having a child like this (and I believe there is SO much good), but the REAL. Much love to you & your family. xoxo

jody - This post was as heart-warming as it was heart-breaking. Wish I had some grand words of wisdom. What I do know is that your family is lucky to have you. Thanks for sharing such a personal struggle.

Natasha Smith - Thank you for sharing - for being vulnerable.

Kim - I so get this. Not 100% what you're going through, but from the perspective of a kid who got "the leftovers". My mom raised the five of us. My youngest brother has special needs and we're now facing the challenges of those needs in adulthood. The only difference now is that there are more of us to help. I believe you are teaching your children incredible lessons of acceptance and tolerance, ones that will carry over to their adult lives. Any of us would have/will do anything for our brother. As my parents have aged and he's sought independence, he now lives with my sister. You have created such a powerful bond within your own family that I'd imagine your children will do anything for their sister as well. I never felt like I missed out. I bet they don't either! Hugs to you. You are an amazing mom. Truly.

Anna - I wish I had a mother like you growing up. To be able to articulate your feelings, your hopes, your despair and your love is a gift to your family (and to us). I wish you and your family all the best.xo

Shannon D - Tara, I can only imagine your pain, and I do not claim to, but as a mother I relate. I am not sure this will work, but could you try to take the angle of spending time with each of the kids, each one needing their own special time. Maybe this could be adapted to family time, sometimes without McKenna, and sometimes just you Jeff and Mckenna? I am not sure it will help, but suggestions and ideas alwasy help to lead you to what fits for you. Your honesty is amazing and beautiful. And I still get tears when I think about McKenna asking how to smile.

Lisa - Beautifully said. I get it. I understand everything you say. Sometimes it is so freaking so hard when I look to far ahead in the future, it scares me. Today is today though and it is glorious. I wrote a post about grief, about my son and I will share the link with you: http://myversionofmylife.blogspot.com/2010/04/it-holds-my-hand.html You are beautiful, and your family is beautiful.

Emily - I just have to thank you for being so real and tell you what an extraordinary mother I think you are. I admire you and all you do for your family. It is a beautiful thing. I envy your ability to share so eloquently. ♥

Mandi - I was in a hurry to get off my butt, turn off this computer, and read the book that has been calling to me all day. . . and then I ended up reading every word of your beautiful post. Maybe it's 'cause I have 4 kids and I feel guilty every day that one of 'ems getting ignored; maybe it's 'cause I have a Mckenna, too. I just want to say thanks for the post, and I hope you find a way that will make you feel like everything will be just fine.

marisa - There were four children in my family growing up. The youngest of which has Down Syndrome. I realize that my experience growing up with my little sister is entirely different from your children's experience growing up with their big sister. But like you, my mother was always riddled with guilt and fear that the rest of us would resent her(or my sister) for the energy/time/effort she required. We are all adults now and not one of us has ever felt any resentment. XOXO.

Michelle - I have to tell you that you are not alone in this. My situation is different from yours, but alot of the guilt and anxiety is the same. Ry is almost 13 and Matthew is 8. It's hard to go out with Matthew sometimes. And it gets harder the older he gets, it seems. I read this post this afternoon, but couldn't sit down to reply until now. Now I know why - for I read Marisa's post and I do feel a little better. And knowing that there are others out there that struggle like you and me about the uncertainly of the future makes *me* feel so not alone tonight. Thank you!

Christine - You have amazing grace and beauty and are so brave for making your life transparent to all. Your family sounds like an amazing one to be a part of. And you are so lucky to have each other. Your words are amazing and I wish you much peace.

Rebecca - You are perfect in every moment. Wishing you peace.

Kari - Love you, sweet Tara.

Wendy - You have such a beautiful way of portraying the truths in your family. I think you are incredibly wise. You are living, listening, and adapting to the new and the changing. Parenting the "easiest" kid on the best day is tough. You deserve all the help you can get...guilt free. As a mom, you rock just as much as you do as a photographer. That you are willing to trade three difficult hours for one possible minute of bliss for your McKenna is proof of the incredible love you have for her. You deserve a break! Hugs and prayers. You are doing an amazing job. Oh and I love the photobooth pics. Priceless.

Gekakel - Tara, thank you for being so open. Thank you so much for your thoughts and words, they made me cry. It is as if I read about our family, about our eldest son. You gave words to my deepest feelings, thoughts and fears.

Trish - I could never try and tell you I know how you feel or that I fully understand all of these bittersweet things going on. But I am relatively familiar with living a life and raising a daughter under circumstances beyond anything I could have imagined. Waters like these are hard to navigate. But as far as I can tell you're doing it all right. Your kids are witnessing you mother with grace. They are also witnessing you being human. One day at a time, sister. One day at a time.

Fi - Oh Tara, I couldn't close this page without commenting but I so wish I knew what to say. Every comment here has been so eloquently and beautifully written, and although I am at a loss for words, I am holding you and your gorgeous family in my heart right now. I have no words of advice to offer but I will say that my heart aches for you all right now. Your post was so beautiful and honest and moving. I admire you more than you will ever know,for all the things you are and all the things you do. The love you and Jeff have for each other and your beautiful children is a joy to see <3 Be strong dear Tara, and keep doing what you do because you are such an inspiration to so many. Sending you HUGE amounts of love and hugs from the U.K Fi xxxx

Rae - your family is so beautiful, exactly as they are. You will find the way and it will be the best way because that is who you are. And they will love you for it, always! you are such an inspiration, even in the times that seem tough. hugs!

Lesley - You are a wonderful loving mother. You and your husband will figure out what is best for your family. When life gets crazy I put that song "Be Ok" on and sing it at the top of my lungs. It doesn't fix anything but it sure makes me better. Wishing you all the peace and happiness in the world xoxo

Ellen - I think realizing the need for help and then asking for it is one of the bravest things a person can do. Thank you for sharing, and best wishes to your entire family. Your bravery will lead you to the right path.

sherry - Sniff Sniff, wow Tara your honosty sometimes blows me away. Sometimes brings a tear to my eye. I get the whole idea of wanting the whole family to experience everything together. My situation is completely different than yours. My youngest is 11, she is gifted but she suffers from an anxiety disorder. She would never leave the house if I didnt make her. She hates to go to the movies, to Disney, to Birthday parties, anywhere that she knows will be a lot of people. I forced her to go everywhere because afterall the family should all be together. I was obbsessed with the notion that we had to enjoy everything together as a family. Most of the time it went well and sometimes she even later said she was glad to have been forced to go, but many times it turned out to be a miserable disaster. Her whining and complaining and meltdowns ruined it for everyone else. Yet the thought of leaving her behind always made me feel guilty and I felt even worse on the occasions that she made it uncomfortable or unbearable for my other 2 children. There is no simple answer. I dont force her to join us when we go to theme parks or bowling or the movies, or even the birthday parties anymore. I do however try to convince her that she will have a good time, Sometimes it works sometimes it doesnt. There is no simple answer, but I have finally excepted that we will not enjoy every single outing every single time if I make everyone come. I finally excepted that leaving her behind to do her own thing is okay. I still feel guilty when I leave her behind but I guess I realized that forcing her to go was only making me feel better. Balance is so hard. I wish you the best of luck on your journey of finding what works best for you and your family. Lead with Love as it seems you always do. :)

rachael - I love your honesty. I can just FEEL the love and care that went into what you wrote. It is very touching. I will keep your family in my thoughts, and I hope that you achieve the balance you are striving for.

Me - The hardest thing - and the best thing I learned as a Mom of a teenager who is on the spectrum is that he doesn't like all the things we want to do as a family - and he is happy staying at home (with other family members) while we go out and do things that make him uncomfortable. We alternate between those outings and the outings that he enjoys. Made a huge difference in all of our lives. Thank you for your honest words and know that so many share your concerns - and we are there for you. PS you are a GREAT Mom.

Valerie - Nothing to say except that you move me in the way you live your life. The way you process and think about your life. You move me.

Sarah - Tara, be encouraged luv - simply by allowing yourself to freely feel the emotions, questions and struggle you eloquently described is a great triumph in parenting. The strength you are exhibiting by being flexible enough to not put your family in the box you may have thought it would fit in at one time, is inspiring - so sincere thanks from this side of the screen.

Me - PS for those people who stare, comment etc, we all look at each other and roll our eyes to each other and crack up. We embrace all the differences and celebrate them openly. Those that stare are the ones with problems, not us.

Karen - Just know that you are not alone, there are many of us out there with special needs children trying to find our way. I always live by the mantras "one day at a time" and "it could be worse". Follow your heart and you will find your way. Your children are lucky to have such a wonderful mom looking after them.

Sidney - Oh, bless you! You are beyond a loving, caring mother. Getting extra help with McKenna will be the right thing for you, if you decide to do it. You will know because you consistantly do the right thing in your heart. These children are blessed to have you and I know that they know it. The reason there is help out there is because help is often needed.

teresa b - your honesty and love for your family pours thru in your post..i wish i had an answer for you or could offer you some words of advice the best i can do is send prays your way and hope you find peace in the happy moments that shine!!

Linda W / Seattle - We all love you that much more for wearing your heart on your sleeve......

Lynn - Tara, I have never met you, but I follow your blog and am truly inspired by your talent. We recently moved to San Diego and hiring you to photograph my family is on my wish list. This post is one of the most honest things I have ever read. Your children are so lucky to have you and I am certain you will make the right decisions for your entire family.

AnnEliz - You are an amazing mom who loves her amazing kids - all will work out - it is ok to get help. Thank you for sharing your innermost thoughts - we all have the same worries and fears but it is comforting to know that we are not alone.

Julie - Again, thank you for sharing. As always, very real and very heartfelt. Much love and many hugs to you.

dawn - Tara, this is so beautifully expressed. Made me cry. I want to print it out and give it to parents at IEP meetings (I am a spec ed teacher...) so they know they are not alone. Thank you for your honesty and willingness to see truth, no matter how hard it sometimes is...I think just doing that is healing.

Laura - I know it's been said already many times here but you're an amazing person, Tara. I think your daughter is one very lucky girl to have a mother as dedicated to her all around well-being as you are. There are many parents of special needs children who would look up to you as an example of extreme strength. I know that's probably not any consolation but you are such an inspiration in so many ways. Growing up with my adult autistic aunt living with us for most of my life, I can empathize with your younger three. It is very difficult; the stares, whispers and questions. I hope you can find a peaceful solution that works for you and your family. Sending many hugs and prayers your way!! -L

Gia Guidry - Tara ~ this is so real... and you know what I love? I love that you really listen to your life. Your inner guidance is leading you and you are aware enough to hear it ;) You are doing a great job. Excellent!

kristinah - You are amazing! eloquent, expressive and honest! Rooting for you and your lovelies through this bumpy, beautiful time!! :)

Chris - Your post read like a giant exhale. I hope you're breathing a little easier.

Laura - I agree with the comments that it's ok to get help. Take it step by step, event by event. You even say this may be the last summer you have before Drew wants to spend time with his friends. Sounds like you are going to give him some freedom and not make him participate in every family activity. The same should go for your sweet McKenna -- guilt free. Yes, there will be times you will miss her, yet take the chance to let go and be free. It also sets McKenna free too. Hugs!!

jenny d - i adore you.

Kim - Tara- You write so beautifully. You have a tougher challenge than most parents, but what comes through to me in your writing is a universal truth of parenting that you acknowledge so gracefully - we are all just winging it. All you can do is the best you can with the information you have at hand. I think you are right in evaluating this transition time in your life. Kids grow and change, what worked yesterday won't always work tomorrow. No matter what it will be okay. It may not be perfect, but good enough, truly is enough. Do you have a counselor you can talk with who might have experience with special needs kids? I have found counseling extremely helpful at times in my life. It can be really great to have someone who is a neutral third party help you explore options. Best of luck to you. Your kids knowing how much you love them will take them all far in life.

Justyna - Dear Tara, no advice, just hugs! You're a beautiful person for being so honest and so loving to all of your children and husband.

Jana - My oldest daughter was the tricky one when growing up - we had meltdowns, issues, troubles - now and then (probably normal with all kids during their lives), yet I also thought we had to do things as a family. When she was old enough to stay home, (her choice) it made our times with our youngest daughter more relaxed, but I felt guilty about that! I believe guilt just comes with the territory of being a mom... Now my oldest daughter is a preschool teacher - she's the teacher other parents ask to babysit their kids after hours. She's also been invited to go on vacations with parents of special needs children to be an extra help for when they want to do something with their other kids that the special need child wouldn't be up for. This weekend she's off to the coast with a family to once more be that help, friend, extra pair of hands. You're doing everything right for your family. As your family grows, you adapt and do different things to accommodate everyone. Maybe it's time to make a little change, find someone to be McKenna's stay-at-home friend. Whatever you choose to do, it'll be right for your family because you're such a caring, loving parent. xoxo

heather mc - i truly believe that you have both the strength and compassion to meet all your family's needs- as a unit and individually. be well during this difficult time...and believe in whatever answers surface.

Jodie - YOU are Amazing...

Sara - I am not a parent, and therefore do not have a child with special needs. But do have people (and a dog!) in my life that at times seriously dictate the flow of my days because of their strongly held preferences, so I could relate in some ways. It's all about finding the balance between togetherness and freedom, so that love and happiness can bloom for everyone. And of course your family is overflowing with love so you're doing just fine!

Pascale - Tara, I have so many thoughts and emotions swirling through me as I read this. I check your blog every day but rarely comment. I feel compelled to at least tell you just how amazing a mom you are. Truly. I believe you never find out how strong you really are until you have no other choice. And that is what you have proven, time and time again as you continue to navigate these unpredictable waters and have to constantly adjust to the ebb and flow of your life and family dynamic due to McKenna's unique needs. Your children will grow up to be compassionate and caring adults thanks not only to having you and Jeff modeling these characteristics but also thanks to having McKenna as a sister and sharing these experiences as a family unit. There is perhaps nothing more difficult for a (skilled, experienced and capable) mother to do than ask for help so it is very brave of you to so honestly reveal your emotional quandary and reflection on the possibility that "how things have always been done" may need to change. Change can be scary. Especially if it initially does not feel natural and causes guilt. But you are processing and analyzing everything and seem to be very clear about being open to exploring new ideas on altering the status quo. Whatever happens, I know you will work through it and find something that works best for YOUR family. They are so lucky to have you in their lives. You are a remarkable woman. (((hugs)))

Visty - Tara, honey, I am at a loss for what to say, as I don't have a child like McKenna. I can tell you that your kids, all of them, are made for you and lucky to have you as their mom. You live intentionally, you look inward to do better, you TRY and you DO. That is worth so much. So much. The beatles singing "love is all you need" is true, isn't it? Because if the love is there, the rest takes care of itself. And I don't mean just feeling love for them, but the action of loving them. You do it, every day. They know it.

Janel - I've never posted a comment before, but am a frequent visitor... Your post brought tears to my eyes today, and i just wanted to let you know that I appreciate your candor in talking about your family. It's obvious that you love all your children dearly, and it's okay to admit how hard things can be sometimes. Let yourself off the hook once in a while... you're doing great! Much love to you and your family :)

Sabrina - You've done such a beautiful job of capturing this time and these feelings that I'm not sure there's a darned thing anyone else could really add. You are such an amazing person, woman, mother, wife, photographer, writer. Your spirit will guide you to the path that is right for your beautiful family.

Shari - ahhh tara...you are such.a.good.mama. i can feel you through your words. and i can relate in my own way...with 3 boys of my own and one of them needing more help/attention than the others...people staring...etc. hang in there. your family is blessed by your immense love and desire to create a safe, warm, happy place for them. and yes, you are right about having each other to lean on. thank you for reminding me of that, and thank you for your beautiful spirit and this post. xoxo

elizabeth pellette - Tara.. You are an incredible mom.. I know its hard to say dont ever doubt that... as moms we all doubt that.. But I see it.. I see how you are as a mom from all the way over here on the east coast without ever having met you or your family... I see what kind of job you do with your kids.. its in their eyes.. it shines through..I see what kind of wife you are.. you are full of love Tara.. its who you are... Life is a Journey it will take twists and turns and throw you about.. but its how you come out at the other end of those twists and turns.. You will find that the decisions you make for your family will be the right ones for you and your family no-one can ever walk in your shoes.. so know that whatever you choices you make and what ever paths you walk down they are the right ones. Love to you Elizabethxo

Jill Phillips - Tara - so many thoughts and emotions going through my mind as I read this post,,,,,,,,,,,,,,what a great read that was; so honest and raw; brought tears to my eyes! I myself have 5 children, and know the strains of raising a 'big' family. I am experiencing them as I type this. Trust the guidance that is shown to you, and keep doing what you are doing - you do it well. You are truly an inspiration to me. The LOVE that you all, as a family unit have for each other, will conquer all. *hugs to you*

Carolyn HP - Wow... like you said, only you can live with Mckenna and I think all you can do is love her and show her love; it must be really hard, but you are looking for answers and help, so it's good to get it out, down on paper, where at least you can examine what you think and feel. I think you are an awesome super human being, but Tara, even superheroes need recharging, so before you burn out your bright light striving to keep your family together, perhaps it is better to see how it might work another way... I know you'll figure it out, and your kids, well they get your big heart and awesomeness no matter what you think, they know you love them and you strive to give them your best always, much love, thanks for sharing as always - Carolyn

ali - Tara, you are so wise and inspiring and beautiful. I know you'll follow your heart and do what's best. My heart is aching right now as our growing-up family changes from 6 to 5+1 as they grow up and leave, and as I try to balance the needs of a preteen with high schoolers. Thank you for sharing your sweet words.

Christianne - Tara, you are beautiful.

mary - Tara, you were chosen to be McKenna's momma for this very reason. Her maker knew that you would parent her with the greatest of care, love and intention. We can only give our greatest love and choose to live intenionally. Conscientiously.With purpose and forethought. With great INTENTION!To parent with the best tools we've got, our hearts, and to do the best with what we know at any given moment. That's why our decisions and directions change, because we have learned something new that has given us pause. Needs change, the heart knows how to adjust and your love will abide no matter your decision. Momma love stands unwaveringly, whether or not McKenna is on every outing your family makes. Whether or not she is directly at your side, you will leave her in a place of love and safety and that is parenting intenionally. YOU are the greatest gift to your family so take care of yourself so that you stay healthy and peaceful. McKenna will always know that her momma will be back for more lovin'!

Betsy - There isn't anything I can say that is different from everyone else-You are brilliant and so full of love. I wish I write half as well as you (let's not mention the photography). You did spur me to reach out and get help for our family with one of my teenagers. Blessings to you and your family.

Domenico - My respect for you has grown from reading this post. I hope I'm not too out of line here, but I think good mothers, good women have trouble allowing help. Mrs. Whitney, I think it would be a wonderful idea to allow someone to help you. I get the guilt, the thought of feeling incomplete with your beautiful daughter at home with someone other than you, but a night with the rest of the family might do you all some good, and I in no way think it diminishes the love you all have for her. I guess you could give it a try, and if it really doesn't feel right you don't have to do it again. As for the staring I'm sorry. I wish I could make it stop. My friend Brenda once told me to not look pass the next street light. She said to just concentrate on getting to that first light, and once I get there concentrate on getting to the next one. Don't look down the street and count how many street lights are there just concentrate on the one in front of you. You know she made it sound a lot better.

Anna - I don't want to tell you what to do. Only you can know what to do for your family. I will tell you a story. I have a dear friend, who has a sister with special needs. Many of her qualities sound similar to Mckenna. She doesn't like noise, crowds, being out of her routine, etc... When the sister was young they hired a caregiver. At first is was to help when the parents were working, but it developed into a special relationship. She kept her sister on routine and happy in the world that her sister lived in (and still does). When the family had events that weren't conducive to her sister being content, the caregiver would stay with her sister and keep her content in her world. As my friend got older and events like graduation and even her own wedding came along, the caregiver stayed at home with the sister. Her sister was not happy in loud crowds and would not be able to share in the joy with the rest of the family. My friend's family desperately wanted to share so many moments with her, but she couldn't share herself with the moments so they allowed her to be content and happy in the only way she could be, which was sometimes at home with her caregiver. They allowed her to be herself and allowed them to be themselves. They accepted that they didn't have to always be physically together to be a family-a happy family. I pray for your family and the decisions you have to make.

lisa leonard - sweet tara thank you for sharing your heart. you have an amazing way with words. i love reading your process. thanks for letting us journey with you. of course, there are no easy answers. it's complicated and imperfect and inside that you have found so much beauty. and that's something real and tangible. as much as you can, let go of guilt. the kids are fine. and any pain or inconvenience they have experienced because of mckenna will make them deeper, more loving, move real human beings. they'll be better. and really, you have to figure out what WORKS for you. what works all together. what works in a smaller group. what works for mckenna. let go of what you think it's supposed to be and do what works for you. sending big big hugs and lots of love. xo

Jen - I feel your heart in this post. I know you will make a choice that will be perfect for your family. You are so good to them....and they to you.

JoAnn Motta - ugg, ugg, ugg.....I can't imagine what it must be like for you- but I can say one thing. None of us on this journey of motherhood know what we're doing. We are all just together, doing our best, and loving our families every day. That HAS to be the right thing- and the decisions we make HAVE to be the right thing when they are made with love in our hearts. I figure that our kids will think we did something wrong regardless, then someday become parents who see how much we did right later...so love is the only thing we can guarantee- and your kids must all feel that....it's so clear how much you love.

SUE, NYC - This was so very honest of you. I was overcome by tears at the end. As the mom of 4 kids just a bit younger than yours, the third being a high-functioning special needs child, some of what you write is very familiar. You have never mentioned McKenna's diagnosis, but I know there are behavioral therapists out there who work with families to figure out constructive, realistic ways to break out of patterns that aren't functional. Finding one with the right qualifications for your family and who understands McKenna's issues is important and could be a challenge, but I think this is the time to marshall all your resources and see what kind of help might be out there. Thank you for opening your heart and sharing this struggle.

steph - You are a wise woman. My wish for you is to have peace with what you know. s

christie - I have nothing to add to the already beautiful and encouraging comments, but I just wanted to send some (cyber) hugs, and tell you that my first reaction to your post was how lucky your kids are to have a mom who so obviously has their concerns and feelings at the forefront of who she is.

laura h. - <3

Natasha - I have no answers, I have not commented here before, but this post has me in tears, and I want you to know I send you peaceful good wishes. Parenting and those decisions we make...if only there was a sign that said this way will result in the least amount of required future therapy ...:) we can only do the best we can with the moment we have. Your honesty touched me deeply, and I will continue to hold you and your family in my thoughts for a long time to come. You are wiser than you may sometimes feel.

Steph - As a Mom, in a newly blended family of 6, the youngest of whom is special needs... I bawled through this whole entry. We are still figuring it out too, and it is HARD. Thank you for writing this. I am struggling with needing help as well... Thank you, Tara.

Stacymeyers - This is such a touching post tara. I am overwhelmed with emotion for you and your family. I am praying that you find the answers you are searching for for everyone in your family. I hope that soon everyone will be as complete and happy as they can be. Know that I will be thinking of you and your family and wishing for the best for each of you.

christine - I'm not a mum and don't have any idea what its like raising a special needs child...but I think there's a beauty in embracing the uncertainty and messiness of the moment. Sure you dont know what the hell to do right now, but its ok...sending the prayers out to the universe like you've done does this amazing thing of bringing the universe to you. You've allowed yourself vulnerability and touched a lot of people by your words here...to me that's pretty damn beautiful. You'll get through this. Lots of Love to you. :)

carrie g. - Your children are so lucky to have you for their mom!

Anne - I opened this post and was like: No way, those are the CUTEST and most clever photo strips I've ever seen! And then I read your words posted below and my heart overflowed with love and compassion for you and your beautiful family. I can't fathom what your daily lives and routine are like, but I know that you love each other to the very core of yourselves and that that will never change. I'm sad that you get stared at in public by ignorant passers by. I'm sad that you only get tiny moments with McKenna, but happy that you do get some. Try not to beat yourself up and feel guilty when/if she doesn't come along with you on some of your family outings. You'll always have her right there with you in all of your hearts. Blessings to each and every one of you. Thank you for sharing so much of yourself. You are a beautiful example. XO

Kim Greene - Oh Tara! I wish I could send a hug over the internet. What a touching post, thank you so much for sharing. Even though I just recently met you at my session, I know that you are a wonderful person and mother. Your children are so loved, you can see it in their eyes in every pic you post. Be strong and follow your heart. As your children grow and change I'm sure your approach will have to change as well but I am sure it will always be in the same loving atmosphere you have created, just in different ways.

Jen - Hey Tara, words feel so inadequate after such a heartfelt post, so I'm just popping in to send you big hugs and to echo what everyone else here says: you are great parents to a wonderful bunch of kids, and every day you do your best by them. I'm glad Katie (I think?!) posted about what it's like to be a sibling of a SN child - it gives you food for thought. And I don't think you should feel guilty for sometimes leaving McKenna at home with someone you/she love and trust so that she can have quiet time and your other 3 can have trips that she doesn't feel comfortable on. I certainly would never even think of judging you, m'kay? Take care x

Pamela - I've not commented here before, and just recently came upon this blog. I taught children with special needs for eleven years before succumbing to burnout, unfortunately. But, I can certainly say that you are one of the best supportive, nurturing mothers of a child with special needs that I've come across! Let me assure you that it is "okay" to have your family time without the presence of Mckenna. I know it must pull at heartstrings, but you are wise in realizing the needs of your entire family as your children mature. Mckenna will always be special and she will always feel your love. Be gentle with yourself. Blessings to your family.

mellie price - You are such an intentional parent. A caring, thoughtful, this-is-my-purpose-so-I'd-better-get-it-right parent. You see there needs to be a change, a rebalancing, and you act. Even if it's hard. It's the kind of parent I'm trying to be. Posts like this go on my mental parenting bulletin board. You have created such a beautiful web of support within your children for them to rely on. You have each other to lean on, they have each other. Sending good thoughts out there for you.

ari macias - i totally understand. i am in the same spot.

julianne - Hi Tara... I was very moved by your post but didn't comment at first. Today I was reading this article about iPads and autistic children and thought of Mckenna. I know that you've said that she hasn't been diagnosed autistic, but I thought I'd share anyways. http://www.sfweekly.com/2010-08-11/news/ihelp-for-autism/all/ You and your family are in my thoughts. ~Julianne

Sheridan - Hugs to you! After school starts let's do lunch before a Dr. Jen apt and I can give you a IRL hug!

kristen - beautifully and bravely stated. i've been reflecting a bit on this subject lately as well...as our 9 yo (ASD) gets older, it is becoming more apparent that we can't move along as if nothing is special and out of the ordinary about our famly outings anymore. ;)

Joanne - Tara - what can I say that hasn't been said? So raw, so beautiful, so honest. I don't know you, but read your blog faithfully and have been along on the journey. I offer you my thoughts, hugs and best wishes, woefully inadequate, but nevertheless heartfelt. Hang in there - you've got a fabulous family!

cherie - hey tara. wishing with all my heart that you receive the help that you need as a mother. i know we all are different, but when i can't seem to find the answers on my own...the best place to find them is on my knees. love you.

Chrissie Baxter - Tara- I cried and cried reading this. I forced our family helper and my husband read this post. It deeply touched all of us. Last year we adopted my nephew who has severe emotional, behavioiral and mental issues. It has been a constant struggle to help him and continue to raise our other three healthy children. We are currently driving home from the crappiest vacation ever. It's like our son is allergic to happiness. His fits and tantrums occur any time one of the other 6 of us are happy. It becomes all about how he isn't happy. He is eleven and by no means a hopeless lost cause as many have told us. But he has for ever changed what our family looks like, what a vacation can be, what we get to do. I cringe at the thought of leaving him behind. But every fun thing we do is ruined the fact that it doesn't work for him. I love him. I love each of my children. It breaks my heart to have my family opened up to others's inspection of what they think we do wrong for or with him. Reading your post brought tears of joy and sadness for me and for our families. Thank you for sharing the real picture of your family. It shines a ray of hope and understanding on the real picture of my family. It heals me to know that I am not alone in my joys and burdens of loving and caring for all my children.

CeCe - Tara, I hope you will make it to the end of all your comments to read this one. Thank you for your honesty, and opening your heart to all of us. I have a couple sibling one older & one younger that are mildly retarded. Both are high functioning but still there are many challenges we've gone thru together. Your children will be blessed because of the love you and your husband have for your family.. and will be incredible people because of the special relationship they will have with their sister. You do need help. You need the support of great people in similar situations to help you figure out what you can do for your family. There are also great services to help your daughter excel to her fullest... whatever that may be. We have been working closely with the Harbor Regional Center with my brother & sister. My nephew, who is autistic also has benefitted from working with them. Please check out my friend's blog. She, like you, is incredible! Her son has a rare disease that affects him daily. presleyfam.blogspot.com More than anything, you've gotta know you aren't alone! I love your blog because I love your work. I love the way you love your family & i feel the same commitment and passion about my own. I wanted to comment because I feel your pain. I hope this help.

Julie - I've been following you since before Anna was born, first on two peas, now here. And fortunate enough to meet you when you took beautiful photos of Tess when she was a baby. I have no advice, just good thoughts and prayers and admiration for the love that is so clearly in your family, and all the effort you put into it. There are no easy decisions.

kelz - you are fantastic parents. it's okay to have help, so the whole family can spread their wings. nate, drew and anna will grow up with a deepened sense of compassion and understanding for others in this world.

Cat - My oldest of three has autism. He is younger than M, only 4, but he has some of the same issues. (I don't like that phrase, but you know what I mean.) He receives in-home behavioral therapy called ABA five days, 20 hours a week. It is teaching him how to live in our world while recognizing his exceptions and his gifts. It helps him, his siblings, our entire family. Insurance covers it. Something to consider.

Anne - Tara, you have moved me beyond words. And if you knew me, you would realize what a tremendous feat that is. ;0) There is little I can offer that has not already been eloquently said here. Yet, I still felt compelled to reinforce two key points. 1) "Fair does not mean 'everyone gets the same treatment'; what it really means is 'everyone gets what he or she needs'." -- Richard Lavoie and 2) As a mother of three, and a 12 year teacher of children who have special needs I know nothing if not this -- when I make decisions with my heart, they are usually the right ones. I'm sure you are no different. Dear girl, you have given every reader a special gift by posting with such honesty and courage. Thank you for being you. Sending you warm fuzzy hugs of support from Canada. xo

Fcas - Oh Tara, my heart goes out to you in this time of need. You are human to feel all those feelings. You will figure all this out and follow your heart. Sending prayers to you and your family!

Pam-Tara's mom - Tara I'm so glad you turned the key and opened this locked door in your heart. By doing so I hope it has helped free some fears and doubts you've been feeling and hiding so well....what an emotion you stirred along with a wealth of knowledge and support to get the help you've needed for so long.I hope all these kind and loving thoughts your way help you gain strength to move forward to do what is best for you and your family.I am so proud of you.

Dawn - trust yourself...trust your instincts...know that you are doing the best you can which, at the end of the day, is all any of us can do...try to let go of the guilt a little bit every day...

Heather - I hope as I write this, my thoughts get conveyed the way I mean it. I couldn't help but think as I read your post and the comments sometimes our solutions present themselves when we do the scary things, take the risks and make decisions. Do something, choose something, like daytime help, and then see what happens. If it doesn't work, try bringing an aide with you. If that doesn't fit with your family, move on to the next trial. Nothing you choose will be permenant, and you may try lots things that absolutely won't work. But eventually you will navigate this adventure, and discover what meets the needs of your family the very best. Trust yourself. You're in tune, and you are involved. You will know when you have found the right thing.

Molly W. - I don't know what to say. But I will say thank you for sharing your heart. Guilt is a nasty thing, you know you are doing the best you can, try and find peace and rest in that and let that nasty ol' guilt slip away a little each day. xo

BethBG - Tara, thank you for always being honest and sharing your heart with us, even about the things that aren't easy or pretty. As a mom of a special needs child a lot of what you said resonated with me. One of my twins has Down syndrome and severe communication delays. I have the same worries that one child feels neglected and resentful. I have the same worries that if we all just try harder one child will "come around" to moving and being in the world in a way that is closer to everyone else. What I do know for sure is that one child is more empathetic, sympathetic and helpful than some kids his age and he loves his brother for who he is 100%. What I do know for sure is that one child is filled with joy at all the little things in life and he makes all of us remember to celebrate those things too. So we sing in the grocery store and run in the rain and wear a silly hat and who cares if people stare (ok, Mommy is still working on that one). I think especially because they are twins we have always operated that we do everything together, but this summer we had little forays into doing things separately and everyone seemed ok with that and happier when we did come back together again. We're looking into respite weekends and special needs summer camp and special olympics and acting classes and karate and art and gearing ourselves up to doing different things with different kids and letting go just a little bit at a time. We'll take it one day at a time and breathe and keep on loving them through whatever comes next. You are a wonderful mom Tara precisely because you care and think about all these things and want to do what is best for each one of your kids. They knew what they were doing when they picked you and Jeff as parents.

kari - Hi Tara, thanks for sharing. I'm so sorry this has been a rough summer but it sounds like change is in the air and that is good. You are an extraordinary Mom and so courageous to recognize your limits. I know you and your family will find your way through this. Thinking of you :)

Trish Haldin - - I hear ya! My daughter, who is 10, is like a little Mother to her brother, who is 5 and has some issues of his own. I feel bad for her because she will never have that normal brother/sister relationship, but now a days - what is normal? I hear the song "Day by day" a lot in my head (my daughter is a theatre girl). When I think about whether or not he'll have friends or ever move out of the house or get a job or get married and have kids of his own I lose myself - I have to keep thinking day by day. He's a happy kid and right now that is enough - right now I think having a preteen girl in my house may be a bigger issue - LOL! (p.s. you're a lucky girl - don't forget that)...

tracy - You're a great mom and have a great family (oh yah, and I LUV your photography! ;) I have enjoyed reading your blog over the years. Life will be good. Hang in there. Hugs to you. :)

arianne - Tara-YOU are amazing. I don't know how you do it, but you do, every day. The following poem is one of my favorites. A Prayer Refuse to fall down. If you cannot refuse to fall down, refuse to stay down. If you cannot refuse to stay down, lift your heart toward heaven, and like a hungry beggar, ask that it be filled, and it will be filled. You may be pushed down. You may be kept from rising. But no one can keep you from lifting your heart toward heaven--- only you. It is in the middle of misery that so much becomes clear. The one who says nothing good came of this, is not yet listening. ©Copyright 1980, 2007, Dr. C.P. Estes

Jane - Oh Tara, I work in special education in Australia and how I long for parents like you for our kids. You have such a wonderful love for your children, you clearly long to see each of them reach their potential but fear your ability to help them because (surprisingly) you can't do everything. You are right that it will always be a balancing act, but from reading your blog it seems as though you are doing a fantastic job! You have persisted taking your whole family out as a group and though it's hard you can see the little gems that occasionally come to warm your heart. I want to encourage you to continue to fight for unity in your family and to also fight for McKenna to be free to stay home and happy whilst the rest of you go on certain activities. Know that as the parents of your children you are able to make these decisions without feeling any judgment. I love reading your blog (and seeing your amazing photos) and I look forward to more posts about how you continue to walk the tightrope of parenting 4 unique but great children!

cheryl yost - Tara, You know what the good news is? ...we don't have to be perfect! Thank God we do not have to be perfect! We just have to love them and use wisdom in raising them. If I can be totally honest from reading this it sounds like you have your thoughts in place...or moving into place. My husband is a psycho-therapist and he was born with really bad club feet. Which meant an entire childhood of 15 surgeries and so much time spent in recovery with braces and casts (and getting what goes along with braces and casts...the looks, stares and all of that) It meant many hours not being able to play like the "normal" kids. It meant "special" classes because he couldn't play with the other boys. But...what it really meant was a boy who would grow into an incredible man that loves people that are hurting. I tell you this because you don't know what amazing things the future will hold for you and the kids. You will not see the outcome of what caring people your kids will become because of life right now. Cherie

Kelly Koesters - Bless you and your family. Kelly

kristi - sigh. so insightful. so wise. so beautifully written........

emily ruth - gosh, you have a way with words... & even though i can't relate to your situation completely, i feel your mom's heart & i appreciate how real you are...& this: 'it means dropping a lot of the preconceived notions I have had for her life and ours'....i can relate to that for sure...we all just want so much for them...& most of the time we don't know how to give it to them until we ask for help (either just from friends through good talks, or the kind of in home help you're talking about)...anyway, i just love reading your words so so much & i know you are helping so many people with them... ps i am totally stealing that photobooth idea...totally! (giving full tara credit, of course :) & i'm a little bit annoyed that i didn't think of it myself.... :)

Susan Hessler - Tara, I know EXACTLY what you are going through. Last September (after nine months of agonizing exploration and struggle) we moved Nathaniel into a group home nearby. I thought I was going to die. But I had reached a place where I could no longer keep everyone safe, and I wasn't even touching trying to do my best by my other three children. Our entire lives wrapped around Nathaniel - as it should be - but the cost was becoming too high. And, I could glimpse around the corner the situation that would be too much - that would alienate us forever or put some other agency in our lives without our control. I don't know what is right for your family. But the group home we found is wonderful - there focus is on giving Nathaniel power. Every hour of every day there are fresh, energy filled young people who are there for him. He gets to choose many more things than he could with us and he has much more structure. We get him for some time four days a week, but we can make choices too - like sending Jack and Alice to spend a week with their grandmother, or taking a weekend trip, or just going to Borders and having a cup of coffee. We just returned from a week trip to Disneyland that the group home arranged - it was a vacation with family, but there was also staff and a room for down time and choices for both Nathaniel and for us. It was amazing. I sat in the bus on the way home and realized that a year ago we were isolated and now Nathaniel has all these people - and he needs lots of people. I watched one staff member get in a bus drivers face because he wouldn't let Nathaniel on a bus first - I would never have been able to do that, would have pushed Nathaniel to wait. But she was filled with clarity and passion and not at all self conscious or troubled by the pounds of emotion that fill these moments for me. You hit it on the head when you talked about not being able to fix McKenna - the gift these staff people give me is that they don't want to fix Nathaniel, they want to fix the whole world so that it is ok for Nathaniel to be Nathaniel. Anyway, I wanted to share our experience. I know that I cannot provide everything Nathaniel needs, what I didn't know a year ago is that there was a solution (for now) that would benefit all of us. Nathaniel has thrived in this situation - he talks more and is more calm. And, we have fallen apart and come back together as a family - we couldn't fall apart before because we had to keep it together for Nathaniel. And, we sleep. Peace to you and all of your family. I'll be sending you all my best thoughts and prayers, Susan

Lana - Hi Tara... I felt compelled to write you a note. Years ago, I took a summer job. I really didn't want to work there, but it was a job placement program through the state, so you got what you got. It was at a care facility. A care facility in Iowa, is kind of like a nursing home, but instead of it being full of just old people, it was mostly people with downs syndrome, or blind, or beginning stages of alsheimers... or like McKenna. People that could get up and take care of themselves in ways, but needed "help" with daily living. Now where I live, we have group homes, that are very similar. A group of people like McKenna, that live get up in the morning go to their job (most work in the same place) and have a life of their own - as much as they can. They participate in other activities and always have an able bodied person around just to make sure that they stay out of trouble. I read your frustration in your post, but I observed something. You assumed that McKenna is missing out on moments of "bliss" when she's not with you. It sounds to me, like her ultimate bliss would being WITHOUT having a house full of "intruders" once in a while. It's ok to be apart sometimes, if it is what makes for a more happy and healthy family in the long run. So yes, what I am suggesting is that a vacation without McKenna is ok. Trust me, she's happier too. It doesn't mean that you're abandoning her, it doesn't mean that you don't love her. It means that you WANT her to be happy too! If someone makes you feel guilty about that (yourself included dear) then that person is wrong, and their vote doesn't count. I'm not suggesting that you never do anything as a family again, just for every 1 as a full group, you have 2-3 as a smaller group. And someday, when McKenna is a full sized grown up, I hope that she gets an opportunity to be out in the world - the best world that she can have for herself - with a place to live, and co-workers, and a sense of accomplishment. Parents don't sign on for 65 years of raising a child.... I don't think you have to sign on for that either, and it doesn't make you any less of a person. There are millions of people living in these situations now, and they are doing well. Please don't feel guilt because *you* need peace too. All above was said with a warm voice and a smile - please don't take it in any other way. *hugs*

rachel carlson - i simply want you to know that you are loved.

star - tara- i almost never coment, but i love your blog. my heart is hurting for you right now, but i can tell you one thing... if you listen to your heart it will tell you the right answer for you, your beautiful family and for Mckenna. you are such an inspiration to so many of us. hang in there.

RobynS - Your blog touches me over and over and you do not even know me. I cannot say more than is already said as the best parenting lessons just come from living in the moment that you are in. My parenting skills continually evolve from raising a stepchild, a healthy child and a child that has a severe medical condition. And now a grandchild in another blended family. This was in my email tonight and you mentioned that you saw Train this summer. McKenna may like watching this. I just love, love, love that Daryl Hall gives a free concert every month. I have watched from the beginning and often go back to watch my favorite shows. http://www.livefromdarylshouse.com/index.php?page=ep33 God Bless.

elizabeth - beautifully written--and a testament to what a beautiful, thoughtful, loving, understanding, fun and patient mother you are. ALL of your children are so blessed to call you "mom".

Jennie - you write so honestly about your family and your love for them is so evident, all the time. your four children are the luckiest in the world to be growing up in such a loving home.

Puanani - Xoxo.

Aly - Blunt. Honest. Heartbreaking.

Marilee - Tara-You are pulling at my heartstrings!! Thank you for sharing that! I remember when McKenna was just a toddler. You and Jeff were trying to get her diagnosed and trying to get help for her. You FOUGHT for her in a way that I'd never seen a parent fight and that has always stayed with me. Parents need to fight for their children's happiness and well being. Even though we haven't seen eachother in YEARS, the years that we were in eachothers lives on a DAILY basis were some of the most memorable learning experiences of my life! I learned so much about being a mother in those years and it was because of you! YOU taught me SOOOOO much about what TRUE LOVE really means! What UNCONDITIONAL LOVE really is. Because the way you were with McKenna was just that! TRUE, UNCONDITIONAL LOVE! We all know that being a parent means you have to have that kind of love, but you did it in such a seemingly effortless, real way. I don't know if there are words to describe it really. You have to see it. Have to FEEL it by watching you with your kids! And because I have seen you with your kids, first hand (a long time ago, mind you :-) I have FELT it, and my life has been blessed. I have shared your story with many friends who have faced similar challenges with their children. You have inspired them and me with how you treat McKenna, how you love her and how you always want what's best for her. And you are the same way with your other kids. This post prooves it! You want what's best for all of them. I'm so sorry you are struggling and in turmoil. I can't say that I know what you are going through, but what I can say is that I know you well enough to know that whatever you decide to do will be a decision 100% based on the LOVE you have for ALL of your babies! You are still fighting for your kids, just like you did 10 years ago. The only difference is that now your fight has changed from fighting for happiness and well being of 1 child to fighting for the happiness and well being of 4. You are amazing and I know you will figure this out! Much LOVE and PRAYERS coming your way! Love you! -Mar

Beth - I sobbed reading this post. You are a stranger to me,,except for what you share on your blog. Yet, I feel I know you and your lovely family. Tara, one mom to another, you are a beautiful mother.. to each of those great kids. It is normal for us to doubt ourselves. Trust your instincts and continue to show your children what an amazing mother looks like, what love looks like and smile.

Julia - This was a really beautiful post Tara. Do not feel guilty about getting help, especially if it gives you more time with your other 3 children.

angelica - what a beautiful post. beautifully written, and so full of wise insights I wanted to copy paste the whole thing. what a beautiful family. how beautiful that you really, really know it. Just discovered you and will add you to my blog roll. look forward to many more

Charla Anne - This is so touching and beautifully written. Hugs to you and your beautiful family.

Jenn Pipe - This brought me to tears. Happy tears. Hopeful tears. Sad tears. Helpless tears. Your love for your family is so apparent. You are a very special woman.

Becky Thomas - It isn't defeat to reach out for help - anyone who works with Mckenna will be blessed by her and she by them - I have been amazed at the precious people who have worked with my son over the years, and we have all been made better because of them. I am struggling with very similar issues with him this past year, so I understand and empathize with you very much.

KarenB - Thank you for sharing your feelings and experiences so honestly. I am the parent of a daughter who lives life on the autism spectrum - and your words hit home so powerfully and touched me so much, because I can identify so completely. It's not something that can be 'fixed'. It just is. As mothers, the best we can do is to love our children unconditionally, and keep moving forward one day at a time. I don't have any answers, and I don't share the eloquence of your other readers, but I do extend my thoughts and prayers and best wishes.

TammyL - Tara, it will all work out. You seem like (from knowing you on your blog) a wonderful mom just trying to do the right thing. I empathize w/your situation, having a son w/autism. One thing that really has helped him (and I said I'd never do it) is medication. I tried every natural and behavioral therapy I could. It is a scary thing, a personal choice, but it has helped him in many ways. We are now able to take him to a restaurant wo/him having major problems where everyone stared at us. It used to cause me anxiety. I always think there is a light at the end of the tunnel. That one day, after all of this hardship things will be better...easier. I hold on to that and plug along. My situation is different than yours. I would not feel guilty about hiring a caregiver. It sounds like it would make McKenna happy to be home w/one. Plus, you could have a peaceful moment out w/the other 3 who need 'normal' family time. Sorry this is so long. My thoughts and understanding are with you and your family.

Maureen - I read this post a few days ago and have come back to comment several times, and have left several times while I pondered what I wanted to write. There are so many lovely words in your comment box, that I'm not sure it helps to add another to the pile. But your post has been bouncing around in my head all week and I couldn't resist just leaving something here for you to read. I am one of four, none of us special needs, but all of us special in our own ways. Some of us were studious and some serious. Some required therapy sessions and some didn't. I can't pretend to know what it's like for you, but it seems like perhaps it would help to think of this as what it is like to have four unique, beautiful, wonderful children. Try try try to not worry about the future and see if you can think about this as what each of your unique family members need at this point in their lives. Perhaps right now you need assistance of some kind, perhaps later you won't. Eventually you'll probably find the perfect balance for your family. I know what McKenna is going through isn't a phase, but for the rest of you, you'll always be growing and changing. If it's hard for them to go on outings with McKenna now, maybe when they're older, it won't be! Though you can predict McKenna's emotional future, there's no telling what lies ahead for your family as you continue to grow together as a unit. All four of your kids are lucky and blessed to have you as their mother! Best wishes as you work through this.

Mette Thomas - Im not sure i should write as i dont think it will be read as i see soooo many posts. But hey its just as much for me as it is for you. I hear you LOUD and Clear I have a 13yr old son and we are facing the same dilemma. It just isn't fun anymore to include him in our family holidays, he is more settled and happier at home or visiting his nans where he has security as well. He needs the familiar the comfortable and the reliable. we are beginning to realise maybe we need to holiday without him, we have done the staycation for years now and tried to stay at home as much as possible, but now its to the detriment of the other 2 kids as they are bored and over the simple things my 13yr old Joshua likes to do, Josh would happilly do the same thing day after day. It is soo incredibly difficult and we often as a family do things seperatly not together as we should, it effects the marriage the family and everyone in it. I'm exhausted and depleted how much more can we do and how many compromises do we need to make to make this family work in some sort of way. It feels disfunctional and not right to exclude him but he and we are not happy as he melts down in one way or another because he cant do what he wants to do when he wants to do it? Everyday is exhausting but also rewarding we love him to the moon and back but i find parenting him the most exhausting task i have ever had from getting dressed in the morning to eating dinner at night its all an experience we have to get through. love my children to the moon and back and just want to do what is "right" but like you we are still trying to find out exactly what that is. Good luck Mette x

Corey Sewell - {{hugs}} You and your family are in my prayers, Tara - for the answer that's best for you, peace when you know it's the right thing to do and continued strength. You are an amazing mother!

Surcie - You are so wonderful, Tara. You are a gift to your children just as they are each unique gifts to you. My family is sooo different than yours. I have one son, and he will always be my only child. But like you I'm a mom who is doing my best, worrying all the while. Another mother out there is going to read this and be helped SO much. Bless you.

Summer - Oh Tara, my heart really goes out to you and Jeff. I can't even begin to imagine how difficult the day in and day out is for you. You guys have done such a great job with Mckenna and the other three too, especially holding down demanding jobs. I'm so happy that you guys have had all the experiences and great memories with the kids this summer! Down the road, the good times you have had this summer will be the times that you remember the most and the kids will never forget it! All the kids, especially Mckenna, are blessed to have parents like you that love and care for them so deeply. I love you all so much!

alexandra karl - tara, i have goosebumps reading your entry. thank you for being vulnerable and sharing such a deep part of yourself. I can sense the profound love that you feel for your family...it's amazing. Your sharing will help others. It sounds like there are a lot of choices for you to try...one day at a time. xo

Heather - Tara thank you for sharing that. i can't imagine what it took to write that post but I'm so thankful you did. it struck a chord with me on many levels and I hope I too can find the courage to write something for myself-- if only as an acknowledgment of my feelings, as a release. I'll be praying for you and your family. Heather

Reb - Thank you so much for posting this Tara. While I wish you weren't not struggling, it is a huge relief and comfort to know that I am not alone. I too have four children, and my oldest has special needs. And while his diagnosis is completely different then what your sweet Mckenna is challenged with, the implications for our family and the guilt, frustration and resulting tears are similar. We hit rock bottom this summer, and are trying to dig our way out. In the process we have come to many of the same conclusions you have: it's time to realize we need to adjust our ideas of how our family functions, to hire help, and to make myself more available to our other children who deserve much much much more of me then they get. Here's to hoping the coming months brings peace to both of our families ... xoxo

Michelle O - All I want to tell you is I wish I could wrap my arms to tightly around you and give you a huge hug that is from the bottom of my heart. {{HUGS}}

Gail - Your writing often gives me goosebumps. These "Six People" posts ALWAYS. Thank you for sharing your heart. Saying you're "brave" sounds pathetic, so instead, I'll just wish you more of the days of peace you're hoping for with McKenna.

Sarie - Thinking of you--- and your amazing family. I am so in love with mine, I know exactly what that means. I pray and think and hope for you to figure things out. xoxoxoxo

annie - Wow, that is an amazing story, I love your honesty and your kids are lucky to have you! It sounds so hard and yet, you know what you are doing even though you are scared, you are plugging ahead and problem solving. You are amazing.

tracy - tara, you are one of the bravest and truest and loveliest people. in your photography and in your words. xo

pixiesticks - Cathy - love. that's all. just sending you all love in dealing with this transition.

julie - you are not alone!!!! All of my family lives in the south. I am lucky if I am able to travel to see them every five years are so. Our biggest family vacation is to Maryland where we take our son the hospital. It is hard BUT we too have to find things around us every day that we CAN do... that he CAN do. YOU ARE NOT ALONE! BIG HUGS!

sam ellis - Tara, whilst I have no words of advice for you - and I KNOW thats not what you are looking for - I can say wow. Wow cos u make me realise that people live amazing lives. People - like you are sent to this earth to teach others about life and living it. I love your amazing real life and "take it as it is" attitude. I am with you. {hugs}

kate - From one complete stranger to another - as a parent I can say, McKenna is truely lucky to have you as a parent. Through your words, your love for her is more than evident and thankfully you have a wonderful husband and close family that will make a decision for what's best for your whole family. And a decision made in that love you have will be the right one, one for which you should never feel guilty.

Artemis - My husband and his 1st wife adopted at birth a baby girl who had been abandoned by her mother. She is now 25 years old. She has cerebral palsy which in her case means she has the intellectual capacity of about a three year old for most things. She is not as challenging as how you have described McKenna. It is very very hard. Things got even harder when she became an adolescent, right around the age McKenna is now. This was around the time I met my husband. The special school she had gone to could no longer help her. She got really, really difficult. My husband and his wife had ended their marriage some years before; a lot of the strife between them was related to disagreement over how to deal with their disabled daughter. Once they parted his 1st wife played virtually no role in her life, so my husband was de facto a single parent. They had other children, and she basically moved on as if the oldest child didn't exist. I used to judge her for that, but once I married my husband and his daughter became my daughter, I realized that, well, it was a lot more difficult and complex than I could ever have known. She also became an issue in our marriage, but I was able to recognize that early enough and forestalled it becoming a serious problem. And now, how do we cope? When it comes to outings, vacations, etc., she often comes along. Sometimes she causes a scene. Sometimes we take an aide along with us. Sometimes she still causes a scene. Sometimes she gets left at home. She hates that. It's never perfect. We feel guilty. We do the best we can. Life's not perfect. There's no changing that. I am terrified of what will happen if/when my husband is no longer around. I cannot bear the thought of she being MY sole responsibility. But I have to consider that that might be my lot in life. There's so much more I could share about all this but of course you've heard from others. Just know that IT IS HARD. And that you are not alone. These are crosses that many others bear. I wish I could be more anodyne about the whole thing. It's really scary.

Crystal - I've never commented on your page before, but you've brought me to tears. Thank you very much for sharing your story. Your love for each other will lift you up and help you on this journey.

MelissaFoscardo - I read this post last night and had so much I wanted to say so I "slept on it". Today, still so much to say...as many other commenters before me. I greatly admire your authenticity. It's what has kept me coming back to your blog. I am a stepmother of 3...no children of my own...so I can't relate firsthand to your struggles with McKenna, but my God, how I can relate to your struggles of just being. So many similarities to me and my life. Right now I am trying to find the courage...and more importantly, the self-acceptance...to lay it all down like you did. To accept and love myself, and not be concerned about how I'm perceived...trying to realize that MY opinion and knowledge of myself is what matters. Gosh, I could go on and on. Last thing: when others say their truth, it gives me the courage...in some ways "permission"...to do it as well. I am extremely grateful for sharing yourself and your truth with me. To me, you shine. Rock on!

Becky - Tara, my heart goes out to you. I too have a daughter with special needs and although hers are not as special as your daughter's I can completely understand where you are coming from. Coming to terms with how you need to go forward is the hardest thing, but as you say, you have to look at what is best for all of you. My daughter is off to boarding school in September - I am dreading it and feel that I am letting her down, yet it should be the best place for her to go as they can deal with her needs in a way that I can't. BUT, I am her mum, so it should be me and that is the feeling I have got to come to terms with. I am not letting her down, I am doing what is best and that is how you to should look at your situation. Easy for me to say I know, as I am finding it hard to accept this myself. All I can say is I wish you everything that you wish yourself and my thoughts will be with you.

Karen Cupcake - "Those are the moments that hold me over through the bad ones and make me sane, but they also tease me into believing that she can have MORE moments like that, if only I try harder. If only I give more. If only I fix her." My daughter just moved in (permanently) with her father to finish out her final 3 years of high school. Because I tried harder. I gave SO much more. AND I JUST CAN'T FIX HER. and it breaks my heart. When I see other parents interacting with their daughters in the way I believe it should be. I cry. Its not fair. I hate THIS! And now, finally I have had to give up. And I can finally breathe! Im not bracing for the event that is sure to come anymore! Its been about 3 months now, and I am so filled with peace and calm. It was the right decision. She is happier WITH ME (when we visit one another) .. though we still have our moments. But we finally have a chance to enjoy each other without all the pain and screaming that has defined our lives since she was 3. It will be ok. Thanks for putting it out there. I would love to be able to tell my bloggers, but my commentators are tilted more on the " how could you" side. So in my minds eye.... you just spoke for me. Thank you.

Misty - I'm sure I might be repeating what other people have said, but from what you show the world you are a WONDERFUL mother and your children all seem to be so well balanced and HAPPY! One of the best things I can tell you is to find other mom's who are doing what you are doing, or have done it. This social society that people complain about is really a wonderful thing. I'm not in your shoes I have two children neither have special needs, I do how ever have a husband with MS, I know its way different. But we do have to adjust the things that we do because he can't do everything, if we want to go to travel we have to have all the extra help from the airlines and then there are all the meds he needs. We can't be in the heat for long, and it does challengel me, because I am the planner! And when we go out people stair because he's 29 and is using a cane or is in a motorized cart. And I can relate to that and it sucks. But we do have a support group that involves all of us, because our children will have to learn to deal and help josh with this too! Back to my point its wonderful to have friends that know exactly what we are going threw and have already done it and can give us ideas of how to deal or make changes! And you living in a much bigger city I'm sure you can find lots of other mommies that can relate or have done what you are doing and can share their stories with you! Keep up all your hard work it does pay off :)

Kristy - I didn't even try to read the other comments, but I really wanted to say something. I have 5 kids, and none of them have any diagnosed problems. Although I do have a son who has some major issues. I feel like I spend most of my life walking on eggshells to make sure he stays happy for everyone else's sake, in the meantime the other kids get the brunt, A LOT. I also feel like if we are going somewhere, I want us all to be together. I hate taking my kids to the mall, but I hate going by myself when I know my whole family is at home. I have had to work long and hard, and I now realize it is not hurting my son when he chooses to stay home. He really finds no joy in watching eating at the foodcourt, having to walk through all the stores, and just dealing with the mall drama. He is much happier at home. I thought you were so brave to put it all out there, and I like you even more for it now. My secret dream is to someday be able to have you photograph my fam when we are on vacation in Newport. From what I see and read, you are an amazing mom. Some things are hard to let go of, but I think it will also help you to know that I get stares also, and I don't have an excuse. I just have a son who can't control himself sometimes. No matter how hard I try to teach him. I hope someday it will click (he's almost 12). Keep fighting the fight, do what you know is right. Include her when she wants to be, but let her stay in her happy home world also. I think it will all work out. You probably hate getting advice from random strangers, so sorry if you do. I will leave by saying you are amazing, and one of my favorite people to follow. You lead a great life!

Hillary D - Tons of comments, someone's probably already said this or something like it, but just in case...you are right! Get help! I grew up in a family with an older sister who was mentally and physically handicapped. Her problems stemmed from a case of meningitis when she was a baby. The disease damaged her brain beyond repair. How you are handling Mckenna right now seems a million times better than how my parents handled their parenting nightmare, but one thing I know, to my core, is that my parents needed help. Like you said, an aide, a special sitter...whatever. Mckenna will still have her moments of lucidity and her breakthroughs and those moments might not happen with you if you have help, but your other kids need you. The stress of caring for my older sister tore my family apart. As you can imagine, there is a lot more to my family's story -- families like ours get complicated. Keeping my sister at home but having someone around to help would have been the best solution for all of us. If you can make it happen, do it. I LOVE your honesty. Thanks for being real! Keep us up to date.

Amy Nieto - I subscribed to your blog maybe a year or so ago for your fantastic images. I have stayed just to read about this immense, REAL, love you have for your family, it's amazing. Thank you, seriously. Lots of hugs and love to you and your family :)

Jenny Duffy - Jesus loves all five of you, and he is the one who can give freedom to you....ALL of you :) He is the remedy.

Maya Laurent - I'm not sure how I can add anything that someone hasn't already said but to say thank you. Thank you for your honesty, it helps us other parents. It truly does in being honest with where our children are and the struggles we have in accepting that. Thank you.

jen h - Oh Tara. You make me love you even more.....meeting you at the Seattle workshop (you were our surprise guest), just such a realness you put off. I am so glad you're sharing because I know that there are so many behind you supporting you. Just know that. I'm a photographer...but also an occupational therapist (and mom)....I wish I could be there in your area to give you some regular/consistent help with resources and time to just have an understanding person around to help. ((hugs))

MJ - I just want you to know you are NOT alone! Our oldest (9, boy) is special needs. I struggle with wanting to do things as a family, and what that means for everyone else in the family to have to "deal with". I struggle with what the other kids (3 of them) miss out on because all attention is on him. I feel guilty for them, wondering if they are really ok with what happens when we leave the house and his behavior is out of control, and the fun gets cut short. I feel guilty if he misses out on things the rest of us do without him. I have no magic solution, but giving the other children some family time without him does help and done a few times a year, it's a nice "break" from the constant focus on him. I hope you find a happy medium for YOUR family!

Jen - Thank you for being brave and sharing this. Having read your other post this next statement may not mean much to you right now, but I'll be praying for you all.

Martha Thomas - Tara, you are so brave. I'm crying as I write this because I, too, am completely overwhelmed and feeling alone. My house is a wreck. My kids get part of me. My husband even less. I feel broken. Thank you for being so honest. I am blessed by your heart and openness. May God have grace on us all.

Jen Hill - This post made me cry. There is so much love and beauty within this one little post. Thank you for sharing. If more parents would really open up, then maybe, just maybe, we could all relate to one another in some way.

Lori in OR - I know this post is months old, and that others have left comments that say so much, but I thought perhaps you had room for one more. You said, here and in your post about last Halloween, that Drew is starting to want to be with his friends more, and that you know you need to let him do that. He has grown and matured and things have changed and will change. But you know this, and slthough there will be a Drew-sized hole whenever he is not with the rest of you, it is natural and good. You will always miss him, but you can't keep him with you forever. Perhaps you can look at Mckenna's life through that lens. Her needs - and those of the other five of you - have changed and will change. Just as it is important for Drew's growth for him to separate from you at times, perhaps it is important for Mckenna as well. ... Thank you for this post. Both of my siblings have sons on the autism spectrum and my heart goes out to them and to you for all the extra effort you give and all the extra challenges you face as parents. What lucky children you have.

CocktailMom - Thank you for your honesty. As a mom to a special needs kid, I hear you. I understand your pain. And I hope that you find the balance you need for both yourself and your partner and all of your children. Your children will be better people out in the world because of being McKenna's sibling. I wish you well. Gretchen

Amy - I realize this is an older post and you might not actually see this comment, but as a sibling to a special needs brother, I can assure you: we turn out just fine. Just a brief moment, here and there, of being present is enough.

stacie - De-lurking on this super old post to say thanks. Your honesty on this post and the follow up post are so good. so true. so real. i have been in therapy for a couple years (still working on it) and a lot of the stuff you are working through resonates with me so much. such a weird juxtaposition; being confident yet being a pleaser. can i just be ME? i don't have issues like you do with mckenna, but man, do I have issues! anyhow... we live local to you and i think if we lived next door to each other and you needed to borrow some sugar, you might come in and share a cup of coffee and we would talk about REAL things and maybe be friends. thanks for sharing.

FABULOUS OCCASIONS PHOTOGRAPHY: {A new definition of perfect…} Houston, Texas photographer » Fab-Oh! - [...] Tara Whitney [...]

Why Imperfections Are Good For Business - [...] their human side.  Sometimes they might bring up serious issues, like Tara Whitney writing about the real-life personal challenges of raising a special-needs child, or Jamie Delaine sharing her past struggles with eating and [...]

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