Cold and flu season has officially arrived at our home. Nathan caught a simple cold last weekend. He has since recovered beautifully, but on Wednesday afternoon he had a major episode while I was driving down I-35. He coughed up something significant and couldn’t swallow it back down (gross, I know). I heard him struggling in the back for a good thirty seconds wondering if I should pull over, all the while Mac was chattering on about strangers and how to know whether or not it’s okay to talk to someone. (I probably need to go back and revisit that conversation.) Eventually Nathan gasped a couple of times so I knew he was taking in air. But gosh that kid hasn’t pulled a stunt like that in quite some time. He generally is fine in the car. That one was really hard on him and therefore a very intense commute for all of us.
Once we got to therapy it sounded like he needed to clear his throat. So we spent the better part of the therapy appointment, all three of us, trying to demonstrate to Nathan how to cough. It felt like a big fat waste of a visit, especially since Mac enthusiastically brought two little applesauce cups for them to try to eat together.
Nathan still wanted desperately to do tastes with Jessica. He immediately started vocalizing, and leaning over the tray searching for food once she put him in the feeder chair and strapped up his vital stim device. He still wanted to try the applesauce, even though she barely gave him any because he was a hot mess. He simply could not clear his throat.
I told her, yet again, how it breaks my heart because he’s so, so eager to taste, yet it’s just not happening. He still can’t do it without aspirating. The video that I posted a few weeks ago was truly an exceptional week. I can’t stop thinking this kid will keep doing more and more. However, it’s more like every once in a while he’ll surprise us, and then be right back to where we were before.
It’s so easy for me to dwell on all of the things about Nathan that he’s not doing. But then when Jessica told me how glad she was to work with him and how he has a piece of her heart, I realized that he is doing things. He’s doing things simply through his presence. Things far more significant. I can’t fully grasp it, but this sweet toddler who’s not toddling is bringing forth compassion and patience and unconditional love in people. He’s even doing it to his mother. I am fighting so hard to give him the best shot at accomplishing typical life skills, but really he is amazing right now and who he will become remains to be seen.
The more I realize Nathan’s strengths, the more I can give them room to blossom. The more I can let go of getting to feeding therapy twice a week every week, practicing all of the exercises at home every day, let him play with food without putting it in his mouth every time he’s interested, giving him blended food I’ve prepared through his tube every time I cook, the more I can see how God meant for him to develop. It’s completely evidenced by his interest in food. The fact that he stares intensely at my mouth when I’m eating or puts his hand on my face to know how it feels to chew, tells me that he’s in there and he’s slowly putting the pieces together.
So maybe one day we’ll be celebrating that his time has come for eating by mouth. This week; however, we’re celebrating that he is all better from his cold. Now that everyone in my family has had their flu shot. I’m off to get mine!
He started the week like this…
And ended it like this… (They’re playing restaurant if you can’t tell, which I think is especially sweet after our feeding appointment.)
Rejoice always; pray without ceasing; in everything give thanks; for this is God’s will for you in Christ Jesus. Do not quench the Spirit.” – 1 Thes 5:16-19
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!