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Thursday, June 16, 2011

"How is Alexander?"

I get asked this question about a million times a day.  Maybe not a million... but quite a few.  It is sort of amazing.... to have so many people care about your little baby.  I want to answer this question. Honestly.

Let me back up for a minute.  Today a woman wanted to pray with me.  She is awesome and I was excited for us to pray together.  But her prayer and my prayer were starkly different.  I prayed for Alexander to not have any more seizures and for the happiness and contentedness of our family.  She prayed for complete healing for Alexander.  This is one of the things I wrestle with when answering how Alexander is...

Alexander - photos of Magnolia break your heart




















































































Also, 3 days ago, one of Alexander's WHS friends suddenly became ill.  She is still in critical condition and for a few days ... it was very scary.  One minute she was just fine, and the next she was puking green bile.  A stark reminder of how medically fragile things can be.  You can read about her (soon to be recovery) HERE ... or you can just pray for Magnolia.  Trust me, this seemingless rambling will all make sense soon.

Finally, a good friend of mine suffers from a genetic disorder that makes her life very painful.  She posted this letter written by someone else with her syndrome.  It was beautifully written and explained the conundrum of having an "illness" that isn't always evident.  This was the final straw that led me to post "How Alexander is."

Alexander is great.  This is usually my response to the question.  That is how I feel.  He's doing great.  He is happy and we are not in the hospital.  I think these things are great.

However... All things are relative.  Alexander is not going to grow his DNA back.  I know that God has the ability to do this, but I also do not believe this is part of his plan for Alexander.  DNA doesn't just come back.  I pray for his health, growth, happiness, etc. I do not pray for his DNA to come back and his "complete healing to be a normal boy." (not my words)  I do pray that he will live life with as much ... amazingness as is possible.  Just because I say he is great doesn't mean he is "cured."  (I told you this would all tie together).  He is still medically fragile at this point.  He still has a feeding tube.. and needs it.  He still has major delays (although I think he's going to have a spurt soon).  He is by some standards - not great.

I guess what I'm trying to say here is that some things are not going to go away.  Alexander is, at least for now, going to have delays.  Alexander is going to fight the seizures.  Alexander is going to struggle to find the balance of nutrition vs oral feeds.

 BUT life is relevant.  When there are things that you cannot change - you learn to accept them. So they really don't even factor into the equation of "How is Alexander?"  They are the givens in the equation of unknowns.  Alexander is great.  He is doing well.  He is happy.  He is home with us.

Life is good.

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