My anxiety is at its worst lately. Our trip to Johns Hopkins is now just about a month away, and I find myself calm one minute, and panicking the next. From smiles to heart-pounding fear in moments. Fear that we'll walk away from the trip with an answer we don't want. But, I keep on keepin' on, and somehow, we'll get through it. And sweet Bean does (and will) keep me smiling.
I realize I don't always write about the tiny everyday kind of inchstones. The progress. I tend to come here . . . to my outlet . . . my blog, when I'm feeling tortured and scared and worried, and so the smilestones get left off. I think sometimes I'm afraid I'll jinx myself or jinx us. With delayed kids, "firsts" are so very very exciting, but sometimes, there's weeks or months in b/t the first and a second, so its scary. I worry that each "first" is a fluke, and that I'll somehow jinx myself if I shout it to the world. Silly.
Anyway, a few things that have given me some perspective this week. Friday, we went to Sam's new pre-school (a center-based developmental program she'll attend 3 mornings a week for 3 hours) to meet her new teacher. It went REALLY well. Really well. She warmed up to her teacher within just a short period, and by the time we left, they were quietly playing with a shape sorter together. We are so very excited for her to start this program, and to (hopefully) watch her just flourish. Before the meeting, I was going through the evaluations of the last few months, gathering the paperwork they needed, and I found her first speech evaluation. From May -- just FIVE months ago -- where we reported she had a "few words" (I think we counted five then, being generous) and two signs. TWO. Now? About thirty signs. And, a "few" more words. The words are coming slowly, but they are coming. This week, we've added some verbal approximations for "more," ("muh") "no," ("no") and "me" ("me"). It is hard sometimes to see the progress when we are with her every day, often thinking about (and unfortunately, focusing on) the therapies and how far we have to go, rather than how far we've come, but looking at reports from five months ago? So encouraging.
Gross motor still is her worst area, and the area that we truly are just inching along on. And the damn evaluations won't "advance" her developmental age there unless she's gaining skills that are measured on the evaluation. Like crawling (army crawling doesn't even count), cruising, etc., so those reports make me cry. Every.single.time. And scare me. Like heart-pounding panic scare me. But, when I look at her, I KNOW the progress is there. The inchstone progress.
The PT that will be in her preschool classroom was also at the meeting Friday, and she pointed out so many wonderful things Sam IS doing, and was encouraging about the rest too . . . we really are excited for people with a fresh perspective to be working with Sam, trying new things, and working collaboratively with us and her other therapists.
No doubt, the progress IS there. She now stands for longer than she previously would, and often with less support than ever before. So slowly slowly, we ARE moving forward, even if on some days it feels like we are at a standstill. Even if those evaluations don't measure the inchstones as "progress." (And this is where I remind myself of one of my promises to Sammie B -- to look at her, not the evaluations. To look at what SHE'S doing.).
Today, I was flipping through the pictures on my blackberry from the last week (I'm sharing the highlights below), and I was just awe struck by my sweet girl. The things she's doing today that she couldn't have a couple months ago. And then? Then I'm sure there's progress. So, here's to the inchstones I have to periodically remind myself of, and here's to making it through the next month before our appointment at Hopkins, and the wait thereafter for any test results, and here's to making it through ALL of that with optimism (something that doesn't come easily to me), perspective, and some smiles along the way.
This little girl amazes me. Every single day. Now, if only I can do a little better at doing what my sweet friend H has reminded me to do . . . living in the right now. Not the yesterdays or the tomorrows. The right now. The RIGHT NOW that makes me smile so much.
(And let me just say, in that standing in the high chair picture, we put her like that to clean her up, and B was standing RIGHT in front of her; no need to worry! But we have been standing her like that and giving her rides around the house, which she enjoys immensely!)
5 comments:
In the short time I've followed your blog, she's developed tremendously! Almost all of the pictures have her standing or doing some other awesome physical feat. She is *strong* in all the ways that matter. Love that picture of her as a rockstar, too.
FWIW, I think we all have the same concerns about developing and the same blindness to our child's amazing progress. It's like body dysmorphia, only with your kid. I can only really tell P has changed by looking at old pictures, old movies, or (recently) by not seeing her for a day and a half when I was in the hospital. There are days when I swear she developed during a naptime (when she does me the honor of taking one, which would be twice a month), but if you asked me how, I couldn't tell you.
I just happened upon your blog a couple weeks ago. I have a 3 year old daughter (Sammie!) who has developmental delays, hypotonia and epilepsy. We just went to John Hopkins hypotonia clinic 2 weeks ago. We had a wonderful experience and were so very impressed with those we met. I hope you and your Sammie have the same experience.
I understand exactly what you are saying about progress- often it is so slow I miss it and i have to hear it from others who don't see her everyday. But those little things bring me so much joy.
I have enjoyed reading your blog and learning a little bit about Sammie, she is adorable!
I love the one of her standing up by the stair rail looking at daddy - she looks so strong on her legs!
Sammie's new pre-school sounds wonderful. It's so great when your own little child-raising village can grow with a few more caring and educated people.
Sammie is amazing and she has made a huge amount of progress. I know how maddeningly slow this all seems, though.
If you guys find yourself in a position to head a few miles (well, a few more than a few...) up 95 while you are at Hopkins, we'd love to meet you IRL.
I agree with EH that all parents feel this way to some extent. But I wanted to say that I have noticed huge changes in her over the past 6 months or so. Honestly though, I don't really think about those physical changes much when I see her because it's hard to get past the freaking awesome personality she has. She charms the pants off everyone who meets her and she'll be doing that the rest of her life. You and B must be doing something right! ;)
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