I wasn’t going to post on this again actually, at least for a while but enough people have called and texted (Thank you!) to check in that I feel I should make more of an effort to keep people informed with something other than a Facebook update or Tweet.
I think we shield ourselves in a protective covering when we share anything- for fear that others will see the ugly, raw sides of ourselves we repress. The fact is that without Christ we ARE those ugly people and it’s only through his help we can be anything but. I’m not perfect, I’m hopeful.
So I’m blogging here in this moment, because you need to know that I’m hurting. I’m at peace right now, but there is an edge to it because life is HARD. I shouldn’t have to schedule another surgery or go back to the Children’s Hospital for testing for different diseases or whatever else will be happening but I will be.
I feel a whirlwind of emotions but I’ll sleep at night. So here’s the deal:
1. He’s stable. He’s ok. That is the best news here. He’s still healthy compared to other children with William’s Syndrome but he’s like an old car… which is a totally weird analogy but it works- he’s alive and ‘running’, no life threatening problems but problems internally keep popping up over and over.
2. The newest problem is something we hoped and prayed would get better on a Gluten-Free and almost Dairy-Free diet BUT it hasn’t. We are meeting with surgeons in the next month or two to schedule another surgery.
3. We are going back to Children’s Hospital in the next few months to have other tests run on him. Due to the symptoms we think he might have Celiac’s Disease. (or something else?) After talking to the doctor, I am now even wondering if based on MY symptoms that I may have Celiac’s Disease as well. It runs in families and we’ve had inconclusive tests done in the past.
But I am fine. No, that’s a lie, but I’m ok. I feel peace and know that this is my strange little road that I’m on, and although I may have stumbling moments where I fear and doubt, that ultimately I’m ok.
I appreciate all your support and prayers! Thank you!