Today is a good day. A great day, even.
Today we had the Peanut’s Visiting Neuro Developmental Therapist (VNDT) over to see us. She has been over the last two weeks but the Peanut has chosen that exact day and time to nap the morning away. She is normally a very speedy napper, but for the last two weeks has slept for more than two hours during our VNDT’s visit.
But today she was awake, fed and ready to show off her skills. I had tried to tell the VNDT last week that the Peanut has been rolling onto her side on both sides. She heard me but I don’t think she believed me. Maybe some parents see a smile, and presuppose a clever thought. See a twitch and call it a roll.
I so wanted to be able to show her how far the Peanut has come since we got out of hospital. I needed someone else to see it and validate her progress.
Her VNDT didn’t hide her enthusiasm when the Peanut rolled onto either side using her head as a guide, rather than letting her head turn last. She put her into the tummy position and the Peanut obliged and lifted her head up, not far, but more than she has in the past.
I got the Peanut to lie on my chest face down as I leaned back on the coach, and like she has been doing all week, the Peanut lifted her head and looked at me. There was none of the head to shoulder thumping she used to do, none of the rearing back uncontrollably and having to be caught by me. She was lifting her head, very intentionally and with control. When she got tired she started to tilt to one side, but for an extended period of time, she was holding her head up. Her VNDT was thrilled and confirmed what I had been thinking all week. The Peanut is making really great progress.
Then her VNDT put the Peanut on her back and then on her side and put some wind chimes in front of the Peanut’s hands. Tentatively, the Peanut reached out and grabbed at the cold metal, clinking them together to create music. I’m not so naive to think the Peanut knew she was making music, or that she understood what she was doing, but just seeing her reaching, batting and playing was amazing. Seeing her trying to interact with the world around her made me light up inside.
I felt a smile creep across my face and just felt this warm wave of pride coarse through me. I am so proud of this little girl. She has spent a month in hospital, but since she got out she has made so much progress. She gets poked and prodded, injected and scanned, and yet she still likes to be touched, still enjoys contact and play.
I couldn’t have felt any happier in that moment than if she had sat up and crawled across the room. I silently thanked myself for making the decision to take her back and knew again that there was never any other way for us to have gone forward. It doesn’t matter if she learns to talk, or walk, or even crawl. This little Peanut is trying her hardest. And I will be there when each and every milestone is accomplished. No matter how many or few there are.
I was talking to a friend, Maggie, at her blog Yo Soy La Lay. Maggie had written a post on Unintentional Ableism where she mused on her daughter Tessa’s potential and abilities and the difficulty of having to drop certain expectations but also wanting the absolute best within the realm of possibilities open to her daughter. Tessa has down syndrome, and is about one of the cutest little critters I have ever laid eyes on. Her mother Maggie, is fantastic at accepting Tessa for who she is and who she will become, and wonders about where her daughter’s future lies. Like her, I feel this tug between having no expectations and having low expectations caused by not knowing where your child will end up. What your expectations should be.
I feel this acutely. Since I have accepted that the Peanut is not going to live the same kind of life as me I have felt so much freer and happier. I have dropped and let go of a lot of my expectations of what I thought she would be like, or what she would be able to do. But that’s not to say I have low expectations. I expect her to try hard and do her best and be the best she can be, whatever that is. And I expect that I will be there by her side helping her try.
Accepting she may not go to university, or may not even learn to walk, doesn’t mean I’m putting any less value on the things she can learn to do. Watching her interact with the wind chimes and seeing her reach out to take part in the world around her just reinforced that for me. I will celebrate and enjoy everything that the Peanut is. And let her decide what is expected.