Should Have Seen It Coming

You know how there are times when you look back and say "I should have seen that coming?"  This is one of those times.  I should have seen some things coming.  


A week and half ago we went for Max's third visit to Shriner's.  This time for genetics rather than ortho.  The doctor we met was amazing, he was older and definitely a grandpa because he played with Max and talked to him and enchanted him the entire visit.  When he left the room for a camera Max was sad he was gone.  We talked a lot about Max's body and being an orphan and the reality of having very little background information.  We headed to this visit with the belief that this would merely confirm the diagnosis of TARS for Max, and we would move from there.  That, however, did not happen.  Dr. Saul readily admitted he had never seen a case of TARS, but in preparing to see Max he had done research and everything in him, after meeting Max and listening to us, disagreed with the diagnosis.  The fact that Max would survive infancy in an orphanage with a low platelet count seemed unlikely to him, I have actually had that same thought.


He took a lot of pictures of Max and then told us he would present Max to his partners and they would all brainstorm and he would get back with us soon.  I really thought soon would be in the next few weeks.  


Thursday morning he called, one week after our visit.  I was surprised and honestly I feel really silly talking to really smart people and he is really smart. The phone call didn't start out smoothly at all!  I stammered and stuttered and well...who really cares!...back to the point, he called to tell me what he and his partners had discussed and what they believe is going on the Max.


This is part that I should have seen coming.  After the next few sentences I was seriously thinking "why hadn't I given this more thought!". Basically they are looking at one of two genetic issues.  They do not believe that Max's body just "forgot" to grow a bone, but that something much larger is going on.  Of course!  I should have seen that coming.  We have had such great news since Max came home.  We were thinking about multiple surgeries to start immediately and so far not one!  We believed we would be making trip after trip to doctors and therapists to fix his arm and help him to learn to function with it, that hasn't been the case.  It's all been so good, but obviously there's a reason his bone is missing and there's a reason his body is a little small, and some other more personal issues, there are reasons for all of this and I wish I had seen it coming.  Honestly, though had I seen it coming what could I have done? Except maybe not feel completely unprepared for the words of the doctor!

So the testing is beginning.  Of course, it will be a slow process, genetic tests are slow. There seems to only be one lab in the country that does the particular test Max needs.  It will take a lot of coordination between people and institutions to get it done. I can only imagine there is going to be frustration, actually the frustration began that day trying to explain what one doctor said to another. Trying to remain calm and not get emotional and remember the really big medical words, which apparently is important as I've already asked for the wrong test!  On a positive note the geneticist has been super easy to get a hold of, every time I call he's in his office...strange I know, and he's patient to answer all my new questions and re-explain (is that a word?) things to me.  He has made it clear we can call him as much as we need, he might regret that decision! 


My heart is nervous and anxious.  I know the scripture, I know the truth, but he's still my son.  He looks to have a long road ahead of him.  We all do.  His fear of hospitals is just starting to wane, and I hate that he might have reason to fear hospitals again.  I know all the right responses. I know we just have to wait and see, I know not to get ahead of myself, I know, I know, I know, but the reality of the situation is bearing down me.  We are, I believe, entering a new road with our boy.  God will either lay a path in front of us or clear one with us as we go, one which we will be able to look back and see, but either way He'll be with us. There's no way we could love our sweet Max more than our Heavenly Father does.  Praise Him for that!


So all you three people reading this blog, no pity please.  I can take about anything but pity!  Max will be fine, we will get answers and life will march on.  My heart is fearful but trusting...that's an oxymoron I'm sure...God is in control.  Pray for us and for Max and for blood work and sonograms and doctors and hospitals, that's what we all need! 

BTW I know I have been vague about the issues, I'll feel more freedom to share later.