I think we are back in the game. The game of life, that is. I'm sure it's totally screwed up, but the barometer I use for how well we are coping with 'things' is "are we enjoying life, as a family?". Obviously, we enjoy each other (most of the time), but it is very easy to get bogged down with the tasks of care....with Lilah alone, but a new baby heaps on another set. Since Ada's birth, we've been treading water...trying not to sink under the jobs of daily living. But, I think the needle is shifting because, in the last week, we've been swimming twice, to church, and out to eat--as a family! Three cheers for us:).
Clearly, attending church was the most rewarding (because, you know, its all about what I get out of it), partially because it's an act of congress getting there, but also because it literally "fills us up". Reminds us, encourages us, sustains our family for the days ahead....which is timely, because the days ahead may be trying.
The short version is that Lilah's scholeosis has progressed significantly in the past 6 months (i.e., her curvature has worsened). "It is impressive", I have learned in the last 3 years, actually means "I am somewhat horrified", in doctor speak. So, yeah, it's impressive--meaning we are going to come up with a game plan before it starts affecting her lungs and heart. In her Orthopedic's words, our choices are"basically all bad options". How comforting.
Three doctor visits, an EKG, an echo, an x-ray, multiple phone calls, and physician and insurance clearance later.....the next step is a complete MRI of Lilah's spine. They say it's a 3 hour deal and she'll have to be sedated. The MRI is Thursday and we meet with the doctor again Tuesday to review the options.
Please pray. I'm not even sure what to ask you to pray for at this point...obviously that she will tolerate the sedation. But past that, I don't even know. The results will either be bad or bad-er, I think. I guess whatever it is, I'm hoping that we can just wait. My 'day at a time' life strategy has morphed into a 'just not today' approach when it comes to dealing with Lilah's medical issues. For some reason (maybe denial, or procrastination?), I always feel like it's best to put off anything we can. She's relatively healthy and happy and I don't want to rock the boat.
As hard as it is, I know this is what God has for her life. It does not mean I understand it or that her suffering does not break my heart, but He has given us a peace that no part of this road is an accident or a mistake. Pray for wisdom for Paul and I, that as we weigh "bad options", that the best choice for our sweet girl will be clear. Our desire for Lilah's years to be good far outweighs our instinct for wanting her years to be long.