This week marked the end of an era of sorts for Ellie. It is the official end of her school year and on Monday, she starts in her new classroom with her new teacher and therapists.
I already knew that each year she would move to a different classroom with a new teacher, but I learned this time last year that she would also outgrow her physical, occupational and speech therapists. The impact of last year’s loss was a just little lessened because we only changed one of her therapists. This year we are losing them all.
Change is hard.
There is no instruction manual that comes with having any child. You rely on people who have blazed the trail to show you the way when you don’t know which brand of diapers to buy or can’t figure out how to get your baby to sleep, but for the most part, it’s trial and error. You get to know your baby and eventually start to feel confident in their survival.
But when you have a kid with special needs, the stakes are a higher with the trial-and-error-approach and there aren’t as many people in your circle who can help. The questions are a little more complex and the solutions are a little harder to find. It’s like you’ve been dropped off in a new country alone where you don’t speak the language or lingo, have no understanding of the way things work or who to ask, and can’t stop the clock to get a lay of the land.
You have no choice but to rely on strangers to help you with the most basic of things like learning how to recognize if your child is breathing correctly or getting enough nutrition. As a parent, you feel inadequate, perpetually behind, completely overwhelmed and, at times, hopeless. The strangers become your child’s entourage who know more about her than you do.
I don’t remember meeting Ellie’s therapists. It’s like they have always just been with her. She was just a little, limp starfish when she started working with them at four months old. Her arms and legs were always spread out to her sides and she couldn’t hold the weight of her head on her own. If you were to put a bottle in her mouth, she didn’t understand how to close her mouth around the nipple much less that there was milk in there to drink.
Week after week, they worked with her and eventually taught her about tummy time, how to play with toys and how to drink from a straw. She learned how to use a spoon, sit up and how to play with playdough. She gained confidence and is understanding the value of hard work. Because of her therapists, she got strong enough to start walking and have her feeding tube removed. Every day, thanks to the therapists, teachers and her school, she is doing more and more things that kids her age can do.
Change is difficult is because of the social adjustment that happens when routines are altered. Ellie’s therapists are more than just people who show up to work each day to do a job. They have all gone above their job descriptions to help me navigate this new country I have been placed in. They are the experts I think to ask first and the ones who see Ellie clearest.
I may not remember being introduced to them, but I do remember sitting on the floor in the gym listening to their passing advice on how to let Ellie be Ellie or how to respect her by holding her to the same standard as other kids. I have watched the way they treat her and have learned to try to do it the same way.
All of the times I have been scared or sad, they have been there. When I am feeling discouraged about how much further we have to go, they always know just the right thing to say to remind me of how far she – and we all – have come. When I need a break, they are the first to see it and the first to lend me a hand – not offer to lend me a hand, but actually anticipate what I need and take the initiative to just do it. They know what hurdle is coming next and help me by picking me up, dusting me off and sending me in the right direction.
It’s hard to describe the way you feel about the people who have saved your child’s life. While there is no one resuscitative event that makes these people the heroes they are, it is what they do each day to build the life Ellie has today. Without their support, there would be no Ellie as we know her. She wouldn’t be who she is. The possibilities in her life wouldn’t be … possible. Ben and I couldn’t take care of her without them.
Sure, these people are all paid to do what they do. They are professionals who go to school and continually learn how to teach others to be their best. But they, and even their families, give continuously for kids like Ellie. Not because they have to, but because they want to.
For parents like me, thank you just feels inadequate. What they do for Ellie and our family is worth more than any gift I could ever buy or dessert I could ever bake. Ours is an unevenly distributed relationship where I will never be able to sufficiently give them back what they have given us. They walked into our lives when we were hopeless and scared and now we are ready and brave.
I know that on Monday, Ellie is going to get to work with her new therapists and her new teachers in her new classroom and at the end of the year I will be sitting here in tears thinking about having to move on again. I know this will be another great year for her and she will learn so much. The list of people who have given us gifts we can never repay will continue to grow.
Ellie is a very lucky girl. We are all very lucky.
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