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
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.
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.
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
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!
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
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.
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. :)
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.
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.
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.
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.
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.
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.
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.
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!!
We all love you that much more for wearing your heart on your sleeve……
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.
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.
Again, thank you for sharing. As always, very real and very heartfelt. Much love and many hugs to you.
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.
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
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!
You are amazing! eloquent, expressive and honest! Rooting for you and your lovelies through this bumpy, beautiful time!! :)
Your post read like a giant exhale. I hope you’re breathing a little easier.
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!!
i adore you.
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.
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.
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
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.
YOU are Amazing…
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!
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)))
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.
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 :)
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.
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
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
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*
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
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.
Tara, you are beautiful.
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’!
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.
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.
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.
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
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.
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.
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.