For the last 3.5 years Lila has watched from the sidelines all that her favorite brother has endured. Without having a lot of info as to what's going on with him... besides, he had a rough start. (this is how I've explained his deficits, and it's clearly the truth) Of course she works with him during therapies, and sits in on some doctor appts (as few as possible). She has seen him taken away in ambulances, visited him in the hospital, and had mommy tell her I might not pick her up from school because we might end up at the hospital for a bit. But I have avoided going into full detail as to all that he's really dealing with. Little bits will be dropped here and there where appropriate. Just so that when we do have "the conversation" it won't be such a major bomb to her.
And this morning was one of those moments. To try to make a long story shorter, Ian's main teacher is about to have a baby so we were preparing a little celebration at school for her last day. This included the most beautiful cupcakes designed by my sweet girl. They went over extremely well and I was explaining that I was told she was so excited with her special cupcake she posted a pic on FB. When I logged on to look and show Lila, I saw on my feed a post from another SN mommy friend. She was sharing how wonderful it was that her 6 year old just took his full blended meal by mouth. I was so excited for her I had to post a comment. Lila was curious so I shared a bit of their story about this amazing boy.
Which led to trying to convey how utterly exciting it is to see such progress. And how why we get so overly joyous every time Ian shows us his hard work is paying off. I explained why Ian left the NICU with a gTube. That he could not drink enough via mouth to sustain life. And how we were told he might not eat, drink, talk or walk. She quickly filled in that he now does it all so well! And he's spelling everything too!
The time to explain these things is after he has mastered all that was uncertain. She thought for a moment and said, I guess all of his crazy therapies are paying off, right? Yes, they are. And being dragged here and there to them all. Or now, having to wait to be picked up from school, because I'd rather have her play in the after-school program than attend every therapy with us. (I give her the choice and sometimes she chooses to join us) It's all worth it. It's all paying off. All the yucky supplements, all the natural breathing treatments, all the mouth exercises, all the patience needed to allow him to walk (or coerce him to). It's all paying off.
She loves her brother more than I've ever seen a sibling show. Even when she has to watch another episode of Word World during treatments (at least he's moved on from Barney & Blues Clues ABC's), or have to go to speech on her precious Saturdays, all that she deals with. The person she can not get enough of, or give enough love to, is her brother. And he adores her as well. He's still not able to say her name but he spells it... just about every time he sees her. And that's working for her.
All that we deal with, all the stresses, heartache and uncertainties in life, this love, and both of their achievements, are what keep me going. I am truly blessed.
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