Manhattan.
We were walking and I saw this place and nobody else wanted to stop and take the picture but I wouldn’t take no for an answer.
I love this picture. I feel that it perfectly captured us, together, on this trip. I am thankful Emily was there to capture so many shots of us together. It is a beautiful photo of my little family of five. But it also makes my heart ache. For the one who stayed home.
I know that we did the best thing for her, it was what she wanted after all. She can hardly tolerate a flight to San Francisco, which is just about an hour. Six hours in a plane to New York City would have been torture for her, and anyone seated near her. Even more torturous for her would have been the crowds, the noise, the tiny hotel room, the walking, the subway, the spontaneous but necessary change of plans when things didn’t go the way we thought or we make a mistake.
I also know that the other children need time away – time for us to focus solely on them – time that doesn’t revolve around Mckenna’s specific and demanding needs, and instead is just about THEM. What we can experience with them. What we can teach them. What we can do as five people who want to see the world. I know that when it’s just us and them, I can do things that I never get to do. I can talk to them and notice them more. I simply have more to give. The ebb and flow of the five of us is so….easy. And uncomplicated. Even on vacation. Even in a place as intense as this. That is good for them.
Emily and I talked about how different our travel experiences were – her with little ones and mine closer to the teen side. How these three can pack for themselves, get ready themselves, tie their own shoes, hold their own jackets. How these three don’t need to be herded and kept close by. They know not to wander. They are so independent. She said to me, “You guys are so relaxed.” I was like, surprised, when she said that. I remember kind of blinking, and nodding, and then smiling because she was right. And I hadn’t noticed. And that in itself is a gift. To be able to travel, with children, and feel relaxed.
So then there’s Jeff and I as a couple. So immersed in our schedule every day, in what we want to do to make our lives work, in Mckenna’s behavior therapy and her school goals and her non compliance and her spontaneous mood changes and whether or not she is sleeping and brushing her teeth. And that is just her! We are also completely immersed in the others’. Their school schedules, activities, homework, playtime, late night teary talks, food making, and the list goes on and on and on. I mean, multiply all of this craziness by four. We literally go! go! go! all day long, every day. Every. Day. Then add in our own needs, our relationship as husband and wife, our jobs, and our home, and we could literally spend every second of every day tending to someone or something else. That doesn’t even include time we’d like to spend with friends or family.
Our lives are full. Full in a good way, but still so very full. I am not complaining. I want this life.
I know all of us are leading full lives, we are all doing the best we can with what we have. The difference for us is Mckenna. Having a child like Mckenna living in your home is really difficult. It is hard because it pushes you to the limits of what you think you can handle, of your patience, and of what you think you can sustain. Our family needs people who can help us with that. This year has been all about finding those people. We know we can’t do it alone, all the time. When we find someone who is willing, we are intensely grateful for it. We now have people in our home working with Mckenna or simply being with her four days a week, a few hours at a time. So we have created a support system, but we are still tweaking and building upon it. It feels so good to know that there are people out there we can depend on, who want what we want for our daughter. Although we know one of our options when we go on vacation is to hire a caregiver to stay at our house with her, it just feels good knowing that we have support from family, who rearranged their schedules and took her into their lives for a week. We would not have been able to have this experience without them.
I know that we did what was needed for her and for the rest of us by having her stay with my family while we were away. I know she was loved by them and taken care of. Not only that, but they got to build on their relationship with her. My stepdad got time cuddling her on the couch. (A rarity). My sister got time taking her out to breakfast. Everyone who helped had a chance to bond with her in a way that doesn’t happen when we are ALL around. Mckenna thrives most one on one.
We wanted a connection to her, even from far away. She hates talking on the phone so we couldn’t do that, but we got updates from family and that helped. Being at the Macy’s Parade and hearing from my mom via text that Mckenna was sitting in front of the television with her breakfast, watching it from California, connected us. Another text from my sister with a photo of Mckenna sitting on the couch, watching a Disney sing-a-long video, surrounded by adults visiting on Thanksgiving, just to let us know she was happy. Hearing from my brother that he was just about to put her to bed, and she was moving through her computer time routine. Bringing Mckenna’s beloved Uniqua with us on the trip and taking photos of her everywhere – Uniqua in Times Square, Uniqua sleeping in bed with the boys, Uniqua eating pizza, Uniqua riding the subway, Uniqua next to a Picasso. We texted some of them to share with her and plan to make her a book for Christmas: “Uniqua takes Manhattan!!”
This is not the blog post I was planning on. This all just pretty much fell out of my brain. I thought I was just sharing a photo. It feels good to put it out there, and let it go. I am acknowledging these feelings, and sharing them so that others might understand better. I have a strong desire to help people understand what it is like to raise a child with different needs, what she goes through, what we go through. I want anyone reading to see that it was amazing for us to get the time away, but also understand how there is always a hole where she is missing. We were minus one. How confusing and sad that can be. How there is light and dark.
I am divided. I want what cannot be. I so enjoyed my time away, my easy, relaxed time away. But I wanted her there. I wanted her to want to be there. I wanted her ABLE to be there. And she cannot. She does not currently have the ability to withstand the stress of a family vacation. We have two families now – one with her and one without her. And they both operate differently. I wonder if it will ever get easier.
There can be so much judgement in the world of special needs children and adults. They can be pigeon holed easily. What works for one MUST work for the other, and if it doesn’t, you are doing it wrong. Decisions parents make are judged as right or wrong, good or bad. We do it to ourselves. In reality, each of these people is just as different and unique as all of us. Each one has their own specific needs, even if they are all grouped into one syndrome or disorder. Each of us, as their parents, have to figure out what those needs are. We have to truly see our children, see what they need, drop the conventions and “what will people think”, and then let our own wants go by the wayside.
I guess I just want anyone reading this to know how we struggle, we question, we love, we celebrate, we try, we fail, we yell, we cry, we laugh, we mourn.
How it’s all we have.
Post edit: I want to make it clear that I don’t feel guilty at all. My emotions come from wishing for things that cannot be, and missing her. Thank you for all the wonderful and supportive feedback.
I said the following about you in a recent blogpost, “This photographer, Tara Whitney, really inspires me. Her style of photography is precisely what I hope to achieve one day. And she doesn’t sugar coat her life. I respect and admire her as a fellow human being.” (you can see the context here, http://sarandkels.blogspot.com/2011/10/sarah-no-longer.html)
Life isn’t easy. I’m only 22 and I know this. But it gets a little less heavy when we share our experiences and realize that life isn’t just hard for me–it’s pretty much hard for everyone. Thank you for sharing your real struggles, real issues, real life. It’s inspiring.
You have no idea how much I appreciate this and the other posts where you’ve shared snippets of your life with a child with special needs. Our son has special needs and I feel every word you are saying and have experienced all these things. I feel so alone so often in how all this feels in my heart and in my head that it is comforting to know there are other moms with similar stories and challenges.
I know how hard it is to take all this honesty and put it all out there. But it makes a difference to many. It makes a difference to me. And I thank you so much for it.
Have a wonderful Christmas!
Tara,
I think it’s great you had the time away to re-focus on your other kids, they need that and you shouldn’t feel one bit guilty as a mom for doing that. I hope in time, you can let that go a bit and KNOW that you will be taking care of Mckenna LONG after the others are gone and you NEED that time away to re-connect, survive even! do not be so hard on yourself!
I am having a very hard time with my oldest, she has OCD, and it has intensified by 1000 this last few months. I thought I was going to have a nervous breakdown….seriously, how much can a person handle. sometimes it’s all too much and we ALL NEED a break!
hugs and love to you, you are a GREAT mom!
I LOVE LOVE LOVE that photo of your family, even though it’s minus one, she was there in your heart and that is all that matters!
tara
I love you. That is all.
you last statement: i think if you’re doing all those things, you’re doing it right. you lead an examined life and that’s the best you can do! xoxo
I love this photo. Beautiful.
And I know I’ve commented before (and you have graciously responded back to me in email) but I wanted to share again how much strength I gain in my own parenting a special needs child when you write these very raw posts. How much I realize from you, that it’s ok that my family isn’t “perfect” and that (although it’s difficult at times to be away from our son) it’s not the worst thing in the world- especially to be able to show my other kids some of that very necessary attention…
THANK YOU. xo
breathtaking Tara. I won’t muddy your amazing words with my own. This was simply breathtaking. Thank you. : )
so loving the freedom shared in this post. i love that you know who Mckenna is and how she feels most loved … and who the rest of your family is as individuals and how they all feel most loved. Can’t really think of any more words to say. My heart feels really full for you right now and all that keeps coming to my mind is the word freedom. Thanks for sharing it with the rest of us.
Tara, this is so poignant & heartfelt. Moms carry around so much guilt the way it is . . . and I can totally understand your heart in this. You’re absolutely doing it right!
Beautiful post! That’s all I have…
I very much know how you feel since I am raising a 12 on the autism spectrum. Each day i feel like I don’t know what to expect from his behavior and it makes it so hard to do things in the “typical” world. I have yet to take a vacation without him but the thought is always there, we have been fortunate that he does enjoy travelling and his beahvior is often better. Its the small things and daily things that we want to do as a family that are such a struggle.Thank you so much for sharing this and that is indeed an awesome pic I want to take the train right now into manhattan and find it LOL. Also feeling like damn if i knew you were in manhattan i would have searched NYC just to hug you and tell you what an inspiration you have been in my photography :) much love xoxo Heather
You are such a great mom!!
I wonder how many moms felt a weight lifted off their shoulders to know that they’re not alone. I love that you are so willing to share the good and the challenging parts of your life, but I truly hope you don’t feel that you owe anyone an explanation or justification. If I have learned anything from raising my special needs children (
<3 the photo, the unintentional blog post and both of your families. Thanks for sharing so beautifully.
sorry, don’t know what happened there…mine are both teenagers) it is that what works for “normal” families just might not be right at all for ours. I’ve said it here before, but what always shines through in your posts and your photos is your love for all of your children, and I think that one of the things that makes you such an amazing mom is that you recognize that they are individuals and you are so respectful of all of their different needs.
wonderful post. Parenting is a combination of making decisions with your head, your heart and your gut.
you are doing it right, don’t let anyone tell you differently.
Love,
Jen
you are kind of awesome.
Love you so much.
Tara, loved your post. NYC is such a fun place to go. We did it in 2010 and it was so hard with Taylor. Just this past year we were able to go on vacation for the first time together with our 2 youngest children. Taylor was much happier with his grandmother than camping in Yellowstone with us. We were able to go river rafting and boating, activities we could have never done with him along. I can empathize with your feeling of missing Mckenna and wanting her to have the same experiences as your other children. You are wise to realize that there are many things our differently abled children will not enjoy like our “typical” children will. I know having a differently abled child with behaviors and medical issues that are off the chart can be extremely hard on a marriage, not because the love is not there, but because the time to be a couple is eaten up meeting those special needs. You and Jeff are so cute together and are such a great example to others. Hugs from Idaho
very rarely do people describe the true challenges of parenthood, thank you.
I totally get it Tara and I applaud you for sharing what you feel. When I saw your first post about your trip to New York my heart ached for you as well because I knew that Mckenna wasn’t there with you. We make those kind of decisions when it comes to our Madison, our life revolves around her but sometimes we take little detours so we can enjoy the ride with just Hayden as well.
Hugs and blessings.
Tara, I love how you are so honest with your sharing. You are a great mom. And your kids are very blessed.
I could never imagine your life but I just wanted you to know it makes me proud that there are women out there like you. You and Jeff just ooz the love you have for your children. I sit here crying just imagining your frustration. God Bless to all of the Whitney family because McKenna could not of picked a better family to live with or receive love from.
Your children are so lucky to have you. Thanks for keeping it real.
I would like to sit and have coffee with you – I could relate to so much in this post (as with many others) – thank you for writing it; you are very lucky to have family nearby who are willing to help – what a gift :)
Thanks Tara. This was so pure.
When words fall out of your brain, they are said perfectly. You know I think you’re an amazing mother to all four of your children honey. Learned the hard way, I know life will never be perfect, but it can still be damn beautiful. Love this so much…and that photo…so glad you took it. Love you. xo
Thank you, thank you, thank you. This was precisely what I needed to read today. You have such a gift.
Absolutely beautiful, Tara. Thank you for sharing the reality of this reality with all of us. It sounds heartbreaking and so, so hard. It’s like I can feel the pain of your heart in all these realities and hard decisions in the words you write. You are so full of grace in who you are.
Thanks for being honest. It helps me in figuring things out with our family. Helps to know that others out there struggle too. Helps to know that in handling things differently, different is just that – different. Not right or wrong. It’s so hard for there is pressure out there for how they should be, how we should deal. But there is no right or wrong. There is just what works for your family, and your family alone.
I love your honesty Tara. Refreshing and real, and I think more people appreciate this honesty than you know. Love the image too BTW! Reminds me of something off of the old school Sesame Street!
I’m so glad you guys have gotten to this point, I know it’s been more work than anyone but you and Jeff can possibly imagine. That’s an incredible thing to be able to acknowledge, that there’s two different versions of your family, but if it’s what McK is most comfortable with, no one should judge. No that is what I call making it work!
Thank you, Tara – you are so wise and so honest. And your wise words come at a good time for me as I’m feeling so nervous about a vaguely similar challenge coming up for us for the holiday season, and you remind me to take a deep breath and let it be what it is.
so powerful and so raw. i’m so moved by your complete and utter honesty. you inspire me.
Tara- that photo is beautiful, love the cardi! :D We have to make the best decisions we can, and from one minute to the next, they could be entirely different…our families are ours, and what we do or need to do for them is ours as well. I think you are amazing! Your children are blessed to have you and Jeff and each other. Glad to hear Emily’s take on the trip too, so note to self: wait until Maggie is older to go to much long desired trip to NYC. (((hugs)))
Big tears—
feeling you beauty, feeling the weight of it all.
Thankyou for sharing so honestly about your beautiful family.
Much love Carrie-anne
beautifully said. i will repeat what another mom said, what you’ve written is a similar story and challenge to our family and you’ve said it so well. thank you for giving a voice to all of ‘us’. thank you for being honest. no matter the heartache, all this builds in us our wonderful treasure chest of ‘life’.
Beautifully honest. Hugs
Wow, thanks for sharing. Everything you guys are doing is amazing…my wish is that you can be relieved of any guilt because I think your daughter is so blessed to be a part of your family….of all the families she could have gotten, she got yours! And of course, vice versa….you love her with all your heart because she is who she is, your precious girl! I am so happy you had a wonderful trip to NYC! It is my favorite place in the world! You are always an inspiration!! Hope the holidays are wonderful for you all!
I’ve decided I need to stop lurking when you say something that touches my heart, which is almost every post. I love the honesty that is here, the messiness, the perfection. Please never stop keeping it real.
You’ve posted more than once about going on vacation without McKenna. You’ll always feel a little out of balance when she is not with you. You’re her mother. But charging those family batteries is an awesome thing–you all benefit so much from those times apart. I look at it this way: Can you sleep at night? Yes. Then you’re doing it right! Happy Winter.
Oh. My. Goodness. What a beautiful post. Thank you so much for sharing a little bit of your heart with us. I don’t often comment but after reading this I just have to tell you that you & your husband sound like amazing parents to all of your children. God bless you & your family :-)
as a mom with two challenging children, I love how you keep it so real. thank you.
I only have Alex but I can relate to every word of this. Peace to all of us that sit in this chair, sometimes the chair is made of velvet & other times it’s shards of glass.
Although you know her needs and wants best I was picturing her being loved on by your other family members and thinking how maybe when the 5 of you go on vacation she gets a little vacation of her own. Love your rawness always always.
Love you.
love it.
You inspire me!
YOu wrote what so many feel about their life and little things we accept and love, but given the opportunity would ask to be changed. Your honesty inspires.
As a mother of a 5 year old who was diagnosed with autism this past summer, I celebrate you and your choices as a mother, wife, and friend! and most certainly agree that what works for one child/family/routine does not and will not work for all! having just gone through a very rough IEP meeting, my heart goes out to you! big hugs! be proud of your decisions!