I’ve been feeling rather “special” lately. While things compared to this time last year (epilepsy diagnosis), two years ago (cranky, cranky Kelsey) and three years ago (hydrocephalus and stroke diagnosis) are so, so good, it seems like our “normal” is so special and I’m still struggling to accept that.
I say things are good because they are. Both kids are healthy (knock on wood!) and happy (knock louder!). Kelsey is doing so well in school and is making gains in her therapies as well. I hoped that starting school would bring back her motivation to walk more than crawl and that’s definitely happened. Here’s a peek at her maneuvering her walker at private speech therapy the other day.
I’m so proud of her. She and I were struggling with the walker for a couple of weeks at therapy. The building we go to is pretty accessible, so I try to have her walk in by herself. After a couple of tough weeks, this was the first time she didn’t give up to crawl instead. This is a new walker. One that is customized to her. It has a back pad for her to rest against, front wheels that can swivel (when she’s ready) and back wheels that can either stop when pushed backwards (like they do now) or move backwards when she’s ready for that. And now after many adjustments by therapists, Daddy and Dad-Dad, she now handles it like a champ. We’ve got a long way to go…but we’ve come so far too.
So again…she is LIGHTYEARS beyond where she was this time last year. But pulling that walker out of the car in the handicap spot and having this cutie walk in to speech therapy. So special.
Kelsey’s communication has also improved ever-so-slightly. She has recently learned–and used appropriately–some new signs. “All done” is ALL she “said” for the last year. “All done” getting dressed. “All done” eating (both at the beginning and end of a meal). “All done” nap. “All done” everything. We learned pretty quickly that she wasn’t really all done everything. But she knew what it meant. And she knew that if she signed “all done” we would respond to her. It was her way to interact even if the message she was delivering didn’t fit. Recently she has learned how to say “help.” Then this weekend she FINALLY mastered “more.” The sign for “more” is a great one to start with any baby. So we did…when she was a baby two years ago. But at almost three years old, she finally got it. She has even used it appropriately which is awesome.
But still. Three to four signs that are sometimes used appropriately by a three year old is NOT enough to communicate one’s needs. And a lot of days this makes me feel so special. And makes Kelsey feel so frustrated. She’s telling me something but I have no idea what it is. Or I know exactly what it is (she wants me to turn Elmo on) but I’m stubborn and want her to point to the TV to turn it on or go and get the picture of Elmo we have hanging on the refrigerator for that very purpose…for her to express her desires. But instead she grunts and whines and often signs “all done.”
We took Kelsey to an ophthalmologist check up last week. This was with a new doctor and Dave and I both agreed that she was our most favorite yet. As predicted, she wanted us to start patching Kelsey’s good eye again to strengthen the right eye that is still “lazy.” If you look at the picture above, you might be able to tell that her left eye is focused on the camera and the right eye isn’t focused. And therefore the eyes aren’t aligned or working together as they should be. We were nervous because we hadn’t really had success with patching–be it with a sticky patch, glasses cover or eye drops–since she was six months or so…and even then she could take it off. And even eat it…
But so far (KNOCK, KNOCK) she is tolerating it pretty well. And that’s all I will say about that since we’ve been doing it for less than a week.
Again, so many things have improved, but… we have to help Kelsey walk. We have to help her talk. We have to help her see. These are things that should be innate. But for me they’re on the daily to-do list and it’s exhausting.
In the last two months both kids have qualified to have a one-on-one at school. The purposes for them are very necessary and entirely different from each other.
For Ben, the curriculum and demands are increasing (he will be a third grader in a month and a half!). In addition to that, Ben uses an iPad at school for a lot of his work completion. I look at this as a wonderful part of our special-ness. He has something that no one else in his class has and that is so necessary for the world we live in. He is so technologically literate and that will do nothing but help him to succeed in the future. He may even surpass some of his peers because a lot of testing is done electronically and he is using the technology in so many ways that can only, I assume, help him. But because he uses an iPad that no one else does, he needs an adult to help him navigate how to adapt the curriculum and/or his work output to meet the needs of his teacher and expectations.
Even though I can see SO many positives in the above paragraph and description of his one-on-one, when I look in the classroom and see an adult sitting next to him at his desk, all I can see is different. Special. And different is special…and we are all unique…and beautiful in our own ways…yadda…yadda…yadda. Easy to say when you’re not the one with the helper.
For Kelsey, it became clear to her teacher, quite quickly, that she needs help. Help with her walker. Help changing her diaper. She’s quite a needy little one. I had no-doubt she needed that adult helper. I’d like her to have a one-on-one at home! Oh wait. That’s me!
Ben had some new diagnoses from the ENT we recently visited as well. To me, it didn’t seem like he’s been able to breathe out of his nose since Labor Day. Well, apparently that’s true because he has a deviated septum, many polyps and major allergies. He, in fact, is not breathing out of his nose. Which is amazing. I can only imagine how much easier this year would have been if he could breathe! We’re on some new meds but that’s about all we know right now. We are waiting on the results of his adenoid xray. These diagnoses are not that abnormal. Plenty of people have these same problems. But add it all up and, well, it adds up.
This is not a new ballgame for us. I’ve only ever known parenting a special child. But recently it seems to be always-apparent. Is it because there’s nothing major happening medically (Thank you, Lord) that requires our attention to focus on actually thriving not just surviving? I don’t know. Is it because the gaps are widening as they get older? I’m not sure. People have told me before that they respected us as parents for never treating Ben as “different” or “special.” I think that might be because I never really allowed myself to accept that we were. But we are. We so are. And I’m cool with that. Most days. Or at least I’m slowly coming to terms with it.
Most days (or minutes) I’m so proud of who we are, how we roll (literally) and how special we are. And other times I just want to be the same. We are so lucky in so many ways. And I know that. And we’re so cute. We’ve always got cute.