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
I love you all so much.
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.
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.
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.
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!
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”
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!
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.
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.
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.
wow. thank you for being so open. definitely thinking of you and your family with the tough choices that lie ahead.
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
friend, i love you.
sending huge hugs and love.
This is beautiful Tara. I love you, mama.
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
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
Wow. You opened your heart and took a photo… Thank you for sharing. Many hugs.
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!
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.
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! :)
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.
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.
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.
You are an amazing mother, Tara. I really hope you know that.
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.
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 :-)
Love the photo booth pics!
big, BIG love to you.
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.
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
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
{{{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
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.
♥
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.
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.
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.
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.
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.
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.
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
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.
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.
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
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.
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!
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!
Tara you are amazing. Sending you lots of prayers.
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.
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