minus one


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.

Join the Conversation


  1. thank you so much for sharing. So great to hear someone else’s perspective on family life when that family includes a child with special needs. I have 2 girls and my youngest has Asperger’s. At times i feel so isolated and then I read something like this and realise I am not alone.

  2. When I first saw that photo, I immediately thought how hard it must be for you to be in NYC with out Mckenna. I can only imagine what it’s like to have a family of 4, and then to have be minus 1. I do know that you seem to be handling it so much better than I ever could. you amaze me in more ways that one. stay strong and positive and know mckenna and all your children are so lucky to have you and jeff as their parents. love to you.

  3. Thanks for sharing Tara, it’s always encouraging to hear someone else’s emotions on such excursions. Our son was diagnosed with Aspergers a few months ago. He’s seven and we’re often experienced some of the things you mentioned. We’ve been unable to go to many places with him because of his inability to manage the noise, people, change in plans, etc. Although he is high functioning, he has been unable to deal effectively with other children or manage his emotions. Before he was diagnosed I met someone who told me about a method of working with autistic children that worked for her daughter. We are now enrolled in that program and have seen amazing results in just five months. Have no idea if you’ve ever looked into this organzation but I thought I’d pass the info along. It’s the NACD, National Association for Child Development, and the web address is http://www.nacd.org. I’m not sure if this would be a good fit for McKenna or but I couldn’t not pass along the info! Wishing you all the best and a happy holiday!

  4. Tara, you are so full of love :) Your words made me tear up, I did not for once think you felt guilty, just happy & sad at the same time. I love the photo and glad you had a chance to recharge in New York. Knowing and accepting that we sometimes need to step back to see the bigger picture is just as hard as letting go when you need to, but as you saw, it worked this time and was what you needed to do for all involved. Only you & your family can understand what life with McKenna is like, but the world should never judge and it makes me sad when people who are different in any sense get judged for how they act or what is on the outside. Thank you for sharing your thoughts with the world. – Carolyn, a fan of your beautiful photos, and then your eloquent words keep me enthralled as well with your food for thought :)

  5. Tara, once again you have mesmerized me with your words (in addition to your photos that routinely mesmerize me!!). Your honesty and the very real lives that you all lead – because you and Jeff work so hard to make it work. The decisions you’ve made; the sacrifices; the heartaches; yet in the end you have created this amazing family of really GOOD people. You are a blessing to US who read and learn from you.

  6. You are fantastic with a camera and fantastic with words. I thought of you yesterday as I read Oprah’s magazine (November issue?….) – you and Jeff are magical. You wove a web around my son when you took our pictures, and you could not inspire me more to be a better parent.

  7. i am dying over all of the bikes. it’s what your front porch would look like if you were living there. don’t get any crazy ideas. ;) mk’s happy. you’re happy and the kids get an undivided you. ahhhhh. life is good. and seriously….uniqua takes manhattan? best.thing.ever. she’ll LOVE it!

  8. i often wonder what it is like to be in shoes like yours. i appreciate you sharing so honestly what it is that goes on in your world; it helps us outsiders understand a little more. love what you share about your family and i just LOVE that photo. i also love? that book idea. can’t wait to see it.

  9. Tara, I could have written this post. My life comes awfully close to yours, only my kid with special needs is a boy and he is physically handicapped. I can totally relate to everything you wrote. Know this: you’re not alone. Thanks for sharing.

  10. Tara,
    I’ve been following your blog for years from Stockholm and I really think you are a great role model to us all, moms who struggle to work and be present 100% in our kids lives. I hope that we can one day visit California just to have the honour of being photographed by your fantastic eyes!
    Hugs from Stockholm and hang in there! you are doing all right! ;-)

  11. I love reading your blog, seeing your pictures. I love your updates on your children. As a mother of 3, I can often relate. I cannot relate what it’s like to be a full-time parent of a special needs child (2 of our children were preemies, but by 18 months were “caught up”). But thank you for sharing your stories, your raw emotions about it all. At one time I was working on my special ed certification, so I have a great appreciation for the families and caregivers of these wonderful children. You have a beautiful family. I am hoping someday you can photograph mine.

  12. You put into words the feelings that I have been struggling with since taking our son with autism on a cross country trip for Thanksgiving. It was torture for him and heartwrenching for me in the exact ways that you just described. I needed your words today.

  13. I loved all of this. You deserved this, the kids deserved this, and McKenna deserved this. And your family freaking ROCKS by the way. But I bet you know that.

    McKenna is a Uniqua all unto herself, and you are finding her keys, for sure. Love you mama.

  14. My favorite quote: “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.” I think this speaks to parenting in general–which is so sad to me. Love your words & willingness to share. :) You are inspiring! I’ll be quoting you in an article tomorrow. ;) Happy Tuesday!

  15. Thanks for your frankness. I work in the schools and work very hard to bring an understanding of parents’ needs to the table. You help me with that. I appreciate your willingness to put your experience out there in the cybersphere.

  16. Thanks for your frankness. I work in the schools and work very hard to bring an understanding of parents’ perspective to the table. You help me with that. I appreciate your willingness to put your experience out there in the cybersphere.

  17. I just wanted to comment as a sibling of two special needs kids (although they are adults now) and as a special education teacher….everytime I read one of your post about your daughter I have even more respect and admiration for you as a parent. You seem to have figured out a very good ‘system’ that works for all. I think it is very important that you have that time away – for you and for your other children. Again, I am so impressed.

  18. Tara – I’ve quietly observed you for several years. Thank you so much for sharing your journey with us. You always give me things to think about, and this post is no exception. I have people in my life who have children that are uniquely special, and I’m energized with how I can help, support and encourage them more/better. And this post makes me smile because I feel so many similar feelings when our own family travels. It’s so exciting exploring together, and sharing experiences, see the world through a fresh lens – the kiddos. Best wishes to you Tara!

  19. at the risk of sounding like a complete weird-o because I don’t even know you, but just have to say…love ya! there are many of us out there that understand the demands you mention. love all the honesty here and you are so right about letting go of what others think. trust me, you’re not alone and your thoughts are not judged. i’m very happy that you were ALL able to enjoy your week…each in your own way. have a great holiday!

  20. THANK YOU for writing this post. I am crying not out of sadness, but out of feeling so happy that someone else gets it. It’s easy to feel lost when you have a different child. And just when you think you’ve got things figured out and a routine that works, something new develops and you’ve gotta wing it until you find your way again. And it’s so hard to keep trudging through, day after day, and having that struggle and those arguments over the same things with your child over and over again.

    Anyway, I SO know where you’re coming from and I SO appreciate your openness and willingness to share the real deal!

  21. Super awesome and super brave. I felt a connection to this post- not because I have a child with special needs- but because I *do* have to operate on a completely different playing field with each of my kids. I can never imagine the stress, the love, the pulling-your-hair out feeling you must have every now and again because you love her so much but you have to make these tough decisions, but it can translate to just simply having kids who are so completely different. I struggle daily about the amount of attention Paige takes over Caden, and I completely agree with you have to do what’s best for YOU and your family at that time. I know we won’t always be where we are now…..and same for you and your family. We are constantly moving forward.

  22. I love this so much. I love your honesty. I have faced some harsh judgement this past year over some of my feelings about having a child with down syndrome (it wasn’t even my feelings, it was my not liking certain phrases and words that can negatively reference people with different needs) and that makes it hard to feel like one can be honest about how they feel. I’m so glad you’re not afraid to share your feelings. thank you so much!

  23. This post made me cry. I have my own Mckenna – my oldest son Spencer. I know exactly how you feel. It’s heartbreaking to always have that judgement though. Mine is now most often self-created, coming from 20 years of judgement from my family. It’s a hard place to be in, you make it look easy. Thanks for being honest about how things are and how you’d like them to be. Thanks for saying the things I cannot.

  24. Thank you for saying this –

    In reality, each of these people is just as different and unique as all of us.

    I am a care provider for folks with special needs. My job can be challenging, but it is always rewarding! I wouldn’t trade it for anything.

  25. i normally just skulk around your blog and soak up [silently] all the beauty, the honesty and the inspiration to “just be”…but the postscript on this post compelled me to stop and say: Good for you. I so admire people who can and will admit what they need, accept that what the people they love may need things that aren’t necessarily what you WANT them to need and do it with a clear mind and heart.
    not something i can claim as a truth in my own life but “hearing” it out loud reminds me of how important it is.

  26. I agree – who cares what others think. Even with “normal” ones you are judged. It’s just how this world thinks. And everyone has an opinion. Fine. What really matters? Not what others think, that’s for sure.
    Keep on keeping on – Love watching your amazingly beautiful family grow. It’s OWN way.

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