Our family had another special evening out last night ;)…Olivia was honored at the SBART annual awards ceremony as athlete of the year for girls lacrosse. ‘Such a sweet affirmation and I’m so grateful for the positive year she’s having. I pray all this goodness is seared into her heart (all the kids’ hearts frankly) and buoys that precious heart for a long while! After a string of evening commitments, however, I’m glad we’re staying in tonight, I need to rest up before tomorrow’s big game!! Ha, ha
The past couple of weeks have not only been an exercise in pacing myself physically, they’ve been an exercise in us pacing ourselves in midst of this disease as well. I say “us” because, as you know, this is a team effort and the continual adjustments impact all involved in my care. We’ve had a lot coming at us…more dr. appts than usual, the delivery of my breathing machine and not-so-smooth learning curve, the boys’ return and their adjustment to my greater dependency, my first cortisone shot to combat the tweaks that come with my continual loss of muscle, an increase in choking incidents, a brand new issue with pressure points and my losing the ability to lift a cup to take a drink depending on the time of day. Frustration and irritability on my part seem to be on the rise too…understandable, no doubt, but certainly not optimal for all involved. I so want to endure this journey with grace and dignity and patience…but sometimes that requires more energy than I can muster. My frustration came to a head last night when I wanted to engage in a discussion with the kids about general life stuff and I just couldn’t…the brilliant insights 😉 are all there, what I lack is the ability to express them and that breaks my heart. ‘Thousands of thoughts but only a few words. Today I’m grieving all the things I feel I haven’t taught the kids yet…oh, I know, they’re smart and will figure life out beautifully, it’s just that we do life so well together and a big part of that for me has been the processing of life we’ve done together. It’s one thing to fade from public life, it’s entirely different to feel like you’re fading from personal life. How foreign it all is!
Ok, boo hoo, that’s enough. I’m still praying for healing or a plateau or, better yet, Jesus’ second coming…join me? Thanks friends!!!