This Moment
Our days are made of moments. Each moment running into the next one until we pass another day. As mentioned in a previous post, Meredith is held about 75% of the time. She is in our arms, in her standing frame, stretched out on her floor bed or out on a walk in her wheelchair but mostly, she is cradled in the arms of one of the many who care for her.
You might imagine her sitting on my lap with her arm tucked in behind and her head against my chest, resting peacefully with her legs draped over my thighs and dangling towards the floor. You would be greatly mistaken.
I have been holding this child for exactly 8 years and 30 days. She is like an extension of me (and her father) and holding her is like a dance that we have rehearsed and perfected over the years. We intuitively anticipate her movements milliseconds before they happen. She throws her head back and we stop it with cat like reflexes. She curls her left arm up like a chicken wing as though she were about to throw a punch and we know that micro seconds later her she will thrust her pelvis outward. If you are not used to holding her, this particular move will have her launching off of your lap onto the floor if you are not ready for it. Her body and the way she moves it is as familiar as my own. When people are visiting, I can see their distraction as we converse. I know they are trying so very hard to stay focussed on the topic at hand and yet they are almost mesmerized by the consistent and fluid movements of our ‘dance.’ As they try to listen to what I am saying, I know that they must be thinking, “How is she able to wrestle with this child without even looking at her while holding a conversation?”
But sometimes in the late afternoon, when the planets have aligned (or something like that!), she will periodically lay her head against my chest and be snuggled into me, still and quiet except for the almost audible sound of her heart beating against my chest. And I will count….one steamboat, two steamboat, three steamboat and if I am lucky, I will get four steamboats before the left arm begins to curl and pull back and her body goes into what must be the billionth arch. I savour those “four steamboats” when she is still. It is in this moment that we are fully present.
Beautiful Julie! I relish in the steamboats!
I’ve been following your blog for a month or so now, and while every post touches my heart, this one made me cry. My Maggie will be two at the end of this month, and we already do this exact ‘dance’. She too spends most of her day in my arms, and those moments, those sweet moments, when I can FEEL the days before her spasticity started to kick in, and she would snuggle with me until I had to get up to feed, medicate her, take her to yet another doctors appointment, or … Shower?
while I miss those days, and the sweet moments that we had, I love these days too. When she makes (and holds) eye contact with me for just a few seconds, I feel that same electricity run through my body. There are no words to thank you for putting so many of my feelings down, and validating some of the deepest feelings in my soul.
You are welcome and by sharing these thoughts of yours with me, you validate mine.
You write so beautifully and it touches my heart and I’m sure other mothers’ out there too. My one and only baby girl was born premature and she was so delicate she stayed at NICU for 2 months. That was the hardest moments of my life – emotionally, financially and physically. While we are not going through the same circumstances, I somehow can feel you and what you’re going through. If it was hard for me then, I think it’s 2-5x harder on your part. But know that there’s so much beauty to what you, your husband and your Meredith are doing and showing in this world – the beauty of unconditional love, the beauty of being a mother, the beauty of a family, and the beauty of a woman’s strength and endurance. God bless you always….
Thank you, Rain. It is indeed tough and has gotten tougher lately. I will write about that in an upcoming post. Your comment is uplifting to this mother’s tired body and spirit…..especially today.
Absolutely beautiful. Maggie’s mom’s comment had me in tears just about as much as your post did.
You are both amazing.
Thank you, Angela! It really is not my intention to cause tears
Just beautifully written as always
Love that picture, and the knowledge that you have the wisdom to savour those rare peaceful moments in the midst of all the archy moments.
Thank you for sharing your precious moments. I love your perspective. You are truly blessed in so many ways. Thank you again for the inspiration.
Thank you for sharing your precious moments. you are truly blessed in so many ways. Thank you again for your inspiration.
I am in awe of the way you are able to know Meredith and are able to help her along.
Julie! I read all your posts, but never leave a comment. They are all beautiful and I am always left thinking, but this post… this post… I’m speechless!
Julie, you are an amazing women. My daughter Vanya is about 7 years old and I exactly know what you mean by microsecond before they do anything we know. I 100% agree to your line about the dance we have learned over the years and getting perfect every day. Your post touched my heart. You write so good.. Keep it up…. Fair play to you.
Julie, you are a true inspiration to all you meet along your journey. That was so beautifully written, I can now say that I don’t only check my email, but also read your articles as one of my daily rituals!
Those 4 steamboats are savoured moments for sure, just as you relish those moments that others may take for granted.
You have inherited, passion, strength and endurance, but I do believe most of it has come from your life experience, and how you choose to look at life and the uncertainty that comes with it.
You are so graceful with your words, and your actions.
I am looking forward to reading your next blog.
Your posts always seem to reflect what is happening in our lives. My daughter is a very strong, very long three year old with Tay-Sachs disease and she ‘dances’ constantly. I feel like we live on a boat as all our daily tasks like dressing, bathing etc happen with continous movement, if you loose focus it does actually make you feel dizzy!
Hi julie, I always find your blogs very knowledgeable..I have a 2 year old daughter with GM-1 infantile.
I understand what you go through everyday. You write so well that I cannot explain in words.
Thank you for sharing tour thoughts and experiences.
I agree with everyone else.
YOU are so gifted at expressing your feelings and putting them down.
many times the things you say are exactly what we want to say but don’t know how to say it as eloquently as you express it.
Thank You for sharing with us
Such a beautiful post
My daughter is now almost 13 and I can no longer hold her for this dance, but I remember well the looks on peoples faces as she threw herself and I moved with her. I always felt like we were soul mates we were extensions of each others body. We were both nervous when she was it the arms of someone else, and even though there were many days when I couldnt get things done and my arm would ache I miss those days. I miss the dance…..
I get that. I am going to write a post about some changes coming up…..I understand how much I will miss this dance when that day comes.
Those beautiful steamboat moments – ours usually come as my son is drifting off to sleep and the tone leaves his body. And you just catch your breath and cherish those moments of calm.
And the dance – I’ve had a martial arts instructor compliment me on my reflexes as I bobbed and weaved to avoid the head that was desperately trying to knock out some of my teeth as we waited to disembark a plane. But when you miss, it really hurts!
It’s so hard to watch someone else hold him – he tests them with even more movement until he feels safe (almost never). They shift arms in two minutes and I think to myself – ‘you’ll never last!’.
I often think my son is ‘the world’s worst sitter’ – we have tried so many seats, but none works as well as the ‘mama chair’. Sounds like he’s found some friends amongst your responses. Not miserable, but it’s nice to have company
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Oh no dont tell me that you’ve been holding your daughter for 8 years !!! I have been holding my son for 9 months now, He wont go in a car seat or a pushchair and he is 9 months old… I also keep flexing him out of his spastiscity and manipulating his extenstion I was hoping he would grow out of it.
Yes, Miriam…..and it was not on purpose. One year turned into another and before we knew it she was turning 8 and still being held. It is incredible, really. We tried to get her into a chair other times before but nothing has worked. All good things must come to an end, though. I would not recommend holding for years and years…it is hard on the mind, body and spirit….
We have been blessed with my daughter, Raegan Aria for just over twelve years now. Our dance has been nothing shy of a pas de deux. Our princess convulses and thrashes most of the day,(and night). I have seen that look from those who dare visit, and the occasional glance of pity. I prefer my life, our life, in the manner in which it occurs…a duck, a parry, a direct hit on the bridge of the nose that brings tears to your eyes. But with me taking this or that blow, it’s one less uncontrolled fist that hits my little princess in the face. It’s not her fault or anyone elses…but it IS an honor.
Thank you for your beautiful, loving reflections Julie. It was a pleasure to shed a tear having read such love.
Thank you, Mark, for taking the time to comment. Yes, one must be selfless and honourable and very understanding to hold our children and take the “punches” when they come. Your comment was filled with love, too.