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
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.
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.
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
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!
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.
God truly did the right thing giving Mc kenna to you and your precious family. You are all so special :)
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.
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
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.
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
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
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.
*hugs* nothing else I can offer other than you are in my thoughts and my prayers.
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.
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.
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
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.
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
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.
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
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.
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.
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}}}
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.
the most beautiful post I have ever read on having a special needs child.
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.
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!
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
Loving you so, so much Tara.
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.
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)
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. :)
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.
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.
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.
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
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.
Thank you for sharing – for being vulnerable.
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.
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
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.
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.
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. ♥
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.
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.
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!
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.
You are perfect in every moment. Wishing you peace.
Love you, sweet Tara.
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.