Brenna had her Early Intervention annual evaluation this week. We get all of our therapy services – occupational, physical, developmental and feeding – through the state’s Early Intervention (ages 0-3) program, so we have just one more year before being transferred to the school district.
It’s a funny thing to be told over and over again about what your child can’t do. The meeting as a whole was very positive, and we love our therapists. They are constantly encouraged by her progress, and her progress overall, though delayed, is really on an upward trajectory as she develops new skills each week.
But this meeting was, as it was called, an evaluation. Which means our therapists had to follow a specific system for evaluating her abilities and inabilities. Which means that practically the whole meeting consisted of “delay…delay…delay.”
I have to say now that I am hardened to her “inabilities.” Previously I would find so much delay frustrating and alarming, I have stopped comparing. (or at least greatly reduced my comparison practices.) I don’t mind what she can’t do yet, because I am so proud of what she can do, and what we have worked so hard to achieve.
Tell me she is delayed, and I’ll tell you how far she’s come.
There is a 24-month questionnaire I’m supposed to fill out (or if you’re my caseworker reading this, I’ve already filled it out 🙂 ) I’m sure many of the answers will be “no.”
Does your child greet people with hello? No, but she waves like crazy to anyone in her path, and it lights up their day.
Do you and your child enjoy mealtime together? No, not usually, but when she licks off the pizza sauce from my entire piece of pizza like she did last night, I want to get on my knees and thank God that she is actually starting to eat.
However, the last question of the survey is: what do you enjoy most about your child?
It reminded me of a question I answered recently for a medical student about a project they were doing on Harlequin Ichthyosis: “What is the best thing about HI?”
I’ve never really thought about it like that. What is the best thing, what do I enjoy, about my daughter, because of and despite her skin condition?
I love our bond. Most of the time, Brenna isn’t completely content until she’s around me or in my arms. While that can be exhausting and frustrating, that is also the kind of connection that comes from so much time together. That comes from me being her protector, her advocate, her caregiver. And that’s special.
I love her joy. She is “on guard” – very cautious and discerning – a lot of the time, but the absolutely best time is when she lets go of her fears and rolls around on the floor laughing like a lunatic as I tickle her belly. Oh that laugh. And that toothy smile, her eyes full of sparkle. It needs to be bottled up and shipped out to the world.
I love seeing the world from a new perspective. I love finding happiness and contentment in the little things. I love having a stronger relationship with God now. I love being grateful for all that I have, and being truly happy for others for what they have. I love encouraging both of my children to do their best and to be whoever they want to be and that I am proud of them, and knowing that I truly mean it. And I really love when Brenna sees herself and signs “beautiful,” and I can tell her without any doubt in my mind that yes, she is so beautiful.