We had already been doing physical therapy for two months prior to receiving Avery’s diagnosis, and Jeremy and I both felt it was going well. We could see him progressing, so that gave us hope we were doing the right thing. The in-home therapy, however, was something that I personally struggled with. I think this was mostly because we were working on goals that were difficult to fully measure Avery’s progress. I grew impatient with the therapists at one point, feeling as though their goals were confusing me as each session just seemed to be us playing with Avery. I soon came to the understanding that even simple play skills like rolling a ball back and forth would be a bit difficult for Avery so these things were important. I came to the realization that my frustration was really due to my own issues and not anything the therapists were doing. Irrationally I was feeling the need to rush and “fix” my son, and the therapists were messing with my grand scheme. Didn’t they know we were on a time schedule?
Learning to let go and allow your child to become who they will and on their own time is universal for all parents.The genetic doctor said to us when we expressed our fear of the unknown, “we will need to let Avery show us who he is on his own time.” Such true words, and at times when I want to throw myself onto the “pity pot”, I regroup and remember that is what we all do as parents, not just parents of kids with disabilities or delays. However, let’s be clear and state that this does not always apply to all children and families. There are degrees of disabilities and to compare some situations to those of parents with a typical child would be insulting and simply not true. I can only speak for myself when I say that at times it makes me feel good to realize that some of my hardships are shared with all mothers. It brings me back down to earth to know my child is not only defined by his diagnosis and that he has much in common with his peers.
My anxieties over the pace in which we needed to “treat” Avery’s diagnosis plagued my mind for months. Although I am in a good space with it all presently, this anxiety still exists underneath the surface. I remember saying to a friend, “He is still a baby so nobody around us will be able to tell he is delayed. The older he gets, the harder it’s going to be to act like nothing’s wrong.” To confess those words stings my heart, but at the same time, there is a part of me that still believes his Down Syndrome will go away with enough treatment.
I’m not sure when, but there came a point both my husband and I had to take it all day by day and learn to have faith that our son would do more than we ever thought possible and worrying about the future only steals from us the blessing of being in the present. Once again, a lesson taught to us by Avery at only a years old. This is not to say that we don’t worry about the future. We are just beginning this journey and I am not naive to where I believe it will all be easy but I have found that at this point, lessons such as this are helpful reminders during the moments of difficulty.
“There are two of us on the run
Going so fast, every doubt we had is coming undone
And falling behind with everything we left there
We held on for far too long”
And now we pass so many people on the road
They could come along, I wish they’d been told
They may call it a shot in the dark
From what we know, it’s not unheard of
Our favorite parts are what we’ll keep
Ornamental parts of love and parts of memories
So everything else has room to grow
‘Cause in better light, everything changes
There’s no race, there’s only a runner
Just keep one foot in front of the other