Tonight, I was sitting on Jamie's bed waiting patiently (or trying to be patient) for him to return upstairs from his mission of choosing which two precious toys he wanted to take to bed from his gazillion superheroes. Clare was sitting in her crib babbling at me and reading her story books. I was marveling at how far she has come in the last few weeks. At Clare's IFSP evaluation in June, we planned our goals for Clare and talked about her transition to preschool. We threw around some options for what we could do for Clare in case she was not walking by next spring (such as wheelchair, walker, etc.) so she could have some mobility at school. And, here I sat, after a day of watching Clare walk all around the house, around my friend's house, and even outside on the uneven driveway and street for a puddle walk today. At dinner, Shawn and I talked about how tomorrow at Clare's OT session, I was going to discuss with her OT ways of helping Clare pull to standing so she did not have to depend on us to put her there every time she fell on her bum. As I sat there with my thoughts wondering, I realized that Clare was standing in her crib with a huge grin on her face. I asked her if she could sit down and stand up again, and she did it. She did it over and over with Jamie, Shawn, and I cheering her own.
It is normal to have dreams, hopes, and goals for your children. I just never had to write these goals down before. But every six months or so, here we are discussing finite goals for Clare and committing them to paper on her Individualized Family Support Plan. A plan I sign that down the road is a testament to Clare's successes and failures. Our walking goal for Clare was her second birthday in March, then my sister's wedding in June. When those events passed with no walking in sight, I shelved that goal for a while. I knew Clare would walk eventually, and I was setting myself up for disappointment each time my deadline came and went. When a few weeks ago, Clare started to cruise, I hesitantly thought about how neat it would be if Clare was walking by Halloween. I could picture her in her little Supergirl costume (yes, Supergirl because Jamie has already decided that he will be Batman and Simon will be Spiderbaby), carrying her trick-or-treat pumpkin, and walking down our street. I cautioned myself about getting too carried away with my daydreams. I never believed Clare would be walking by the end of the summer.
As we gear up for Clare's six catheterization, I can recite the laundry list of what is "wrong" with Clare. There is an even longer list of what can go wrong. Yet despite all these lists, I still choose my child and the wonderful (if, at times, very stressful) life we have because of her any day of the week. I don't know what the future holds for Clare or what she will be capable of. It's a fine line we walk between having our hopes and dreams for Clare, yet not letting those hopes and dreams cloud over who Clare really is. Allowing Clare to be who she is, not who I expect her to be. And all this at the same time as not underestimating Clare and what she is capable of.
At the end of each day, I reflect how I have this amazing opportunity to watch Clare grow and learn and be whoever she is going to be. I look forward to the future of all the possibilities and potential Clare has to show us. I will still hope and dream, but I will also listen to Clare and let her lead the way.