Or maybe it should be, “Catching my Breath”.
Three cast changes so far. Yellow and Green. Yellow and Orange. Pink and Red. Isaiah has been very specific. He’s extremely terrified of the saw and he not only screams in terror but shakes and trembles the entire time they are removing his three casts. He continues to tremble for many minutes afterwards. During the actual casting process he cries and begs me to stop them. He uses a very clear and direct voice to tell me. Not hysterical, just direct. Steve hold his trunk down and I hold his limb. There is the doctor casting and assuring the correct angles are achieved, while the physician’s assistant or sometime several prep and cast, as well. Usually the care coordinator is there to oversee the whole thing and keep us talking, trying to distract Isaiah, with minimal success. It’s essentially one big, exhausting gong show.
Why do we do it? Results. So much progress has been made in the past 3 changes. The doctors are encouraging and keep us focused. We are being affirmed to continue massaging him and stretching his limbs out as much as we can in both the passive and active stretches. And to top it all off both doctors have been unwavering in their hope for him. His upper extremities doctor just exclaims over the ability he has to activate and trigger is left forearm muscles (this is really, really big!). His lower extremities doctor talks like he fully hopes for Isaiah to stand and walk. We try and temper the comments in our heads with (yeah, with a walker. or right, but that’s only one set of muscles.), but the hope is contagious, especially in the face of such experience and surety. We are totally in this for results. And we can measure them with our eyes already.
We also began sessions with the attachment therapist. Without betraying confidences, I can describe it in two words: focused and exhausting. (Catch that word again? Exhausting? Yeah. We are so tired.)
Stephen has been driving us 1.5-2, sometimes 3, hours each way for every single day we have had an appointment or time out. With the outings we did last weekend it was 5 days last week and then the other two days involved groceries and errands. His arms are sore. I’m trying to fit in hours of homeschooling around the appointments and while I am totally thrilled with the progress the kids are making, it makes for little to no down time. The days end involves putting the kids to bed while carving a bit of one on one time with each child. Then comes homeschool prep and Stephen’s work hours. We go to bed late and get up a few time in the night for Isaiah’s medication, before doing it all again the next morning.
Sound whiny? It’s not meant to be. I just needed to write this all down so I can remember what it was like in this season.
Beauty around us? Endless pumpkin patches. Yellow corn fields. High stepping Amish horses passing our front door. Chick-Fil-A (who knew they were right about it – so yummy!). Scented candles. Figuring out details of our time here (the best grocer, how to get a US mailbox). And the kids at mealtime. They are so funny. I keep taking mental pictures at that meal. I don’t want to forget them at these ages.
So, if I’ve promised you something, dropped the ball and not responded in a timely fashion, out and out forgotten something, please offer me some grace. I’m doing the best I can. We are surviving and at times still thriving. We are in it to win it. We just may need to catch a nap sometime soon.
From Paradise…
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