The hard news is that the most challenging issues are, at their core, genetic. The other hard piece is that some of the most challenging pieces may not, in fact, get better….they may even get worse. Some of the issues are just simply quirks that make Logan the fun, loveable child he is. Some of the issues present a bit more of a challenge and require some guidance and help. And some seem just overwhelming and daunting. Knowing that there are answers and potentially more help available has been like shining a bright light into the shadows of our day-to-day struggles.
So…what does it mean? At this point, it means more appointments at Seattle Children’s. The team there has been amazing! Logan will continue to be seen (and overseen) by the Craniofacial team, and his chromosomal issues will be managed by the Craniofacial Genetics team. Those teams are integrated, so it won’t mean anything but adding a few more experts. We can handle that. And, they’ve been so fabulous to get us in quickly. Craniofacial Genetics clinic only meets certain days, and the particular specialists we need are only together in clinic once a month. BUT! They are together at Craniofacial Genetics on May 13. We hadn’t planned on a week at home after Tori’s graduation from WSU, but it was so easy to make the shift…he needs to be seen. We need answers (that we know may never come). We need help. So, we’ll stay in Seattle until May 14…and longer, if there’s a critical need. We anticipate more clinic visits when we are home in July to see additional specialists.
It also means we’re trying to find a place of balance. How high do we set the bar? What things are really, truly beyond his capacity, and which ones is he ‘playing us’ on? How do we help him see, understand, and control the challenging behaviors? How do we deal with them?? What about the meltdowns and temper tantrums that rage for hours—is that chromosomal? Or hormonal (he is 11 1/2, after all)? Or is it attachment/trauma/adoption related? How do we tease out all those pieces? Then there are the other questions, the ones that hang out in the background: What will he be able to accomplish? Will he be able to live independently someday? What about the increased risk of mental illness? Or physical illnesses that can occur with abnormalities on this particular chromosome?
Life is a bit challenging these days. I have told God a couple of times that this is WAY beyond my pay grade. Fortunately, I say that from a place of gratitude, not of anger and frustration, because I know for sure that it’s not above His pay grade. He knit Logan together. He put Logan in this family. And while I feel very overwhelmed and extremely under qualified, I am not being asked to walk this road alone. As we’ve been helping the boys memorize Psalm 23, one verse sticks with me:
We move forward in faith through this valley…
“Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.” ~Psalm 23:4