It's the not knowing

People ask us on almost a daily basis: "How do you do it? How do you keep it all together?" They say things like "You are such an inspiration" or "Your family is so amazing". And don't get me wrong, these are valid questions and these sentiments are so thoughtful and genuine and we appreciate all the encouragement, but I have to be honest.

It's hard. It's hard having a chronically ill, medically compromised child. It's difficult to remember medicines, give all the feeds necessary, keep all the appointments organized, get all calories counted, take all the vitals, order the right medical equipment, call the insurance companies, schedule therapy and fight for every oz he gains. But that pales in comparison to the "not knowing". It's the "not knowing" that's the hardest.

We don't know why Blake's blood pressure is high and hard to control. We know that it's related to his kidneys and his medicine has a hard time being metabolized by his GI system so he doesn't get the most effective dose. But we don't know what caused the problem to begin with.

We don't know why Blake's GI system doesn't work right. We have no idea why he has Gastroperisis and why it doesn't empty correctly. There's no rhyme or reason to his ability to keep food in his stomach or get rid of it.

We don't know why his legs are turned in. His femurs and his tibias are both facing his middle. His hips are just fine. The orthotics hes been given aren't really helping but we are trying. And yet, it's still frustrating to have no answers.

We don't know why his immune system is so compromised. He gets sick a lot. This week will have been our 4th admission in 3 months and our longest one yet, at 5 days 6 nights. We have no answers for that. I don't know why he gets so sick all the time. I just don't know.

We don't know what exact GI bug plagued him this week while we was in the hospital. There's been no positive test for anything specific. We haven't found a link to anything this week that would help us get answers for all our other questions.

We are anxiously awaiting the return of the genetics/mitochondrial testing. It might give us answers, it might not. If it doesn't then we are stuck with the remaining anxiety and frustration and weariness that comes in the "not knowing". But then, are we really?

"But they that wait on the LORD shall renew their strength; they will mount up with wings like eagles; they shall run and not be weary, they will walk and not faint." Isaiah 40:31