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I know, I know….my past few posts about Stanton’s health have been the same story!  We continue to face the same issues – nothing health wise has really changed.  He’s loving school and really loves being a big brother to his 5 week old baby sister!  It’s been interesting trying to balance his health with a newborn baby girl!  So many have asked what’s next?  Where we will push next; what doctor we will visit.  I am just recovering from having a baby….and am not ready to travel with one so little and the other chronically sick.  I do have some ideas of where I’d like to push and investigate next, I’m just waiting for baby girl to have some vaccines and for us to get through the holidays.

Stanton awoke on Halloween morning with a terrible cough.  He spent the entire day sounding like an old man; coughing and sputtering.  I gave him extra breathing treatments trying to keep him going so we wouldn’t miss trick-or-treating.  That night we made it to my sister’s for a party and trick-or-treating.  Stanton made it to about six houses before needing to sit in his stroller.  I literally had to talk him into knocking on two more doors before we decided to call it a night.  He had fun while it lasted, which wasn’t very long.  When he has a respiratory flare up, the wind is truly knocked out of him and he simply has zero endurance.

As a mother, my heart is broken for my son.  I realize he doesn’t know things should be any different, as they’ve been this way for his whole life.  I acknowledge that I am in the midst of grieving this reality.  I wish he knew what it felt like to really feel good.  I’m not sure he’s ever had a day where he felt “normal” inside.  If it’s not his cough and difficulty breathing, it’s a pain in his stomach.  If it’s not his stomach, it’s a reflux kind of day.  If it’s not reflux, it’s constipation.  If it’s not constipation, it’s a day of blow-outs.  If it’s not a day of blow-outs it’s a day of low energy. If it’s not a day of low energy, it’s a day of unexplained hives.  If it’s not hives, it’s a hunger strike kind of day.  And so on…    

I used to pray and hope for healing, but now I find myself asking simply for today.  I pray that today Stanton will have a good health day.  I pray that today, maybe a doctor or new idea will present itself.  I pray for energy to continue aggressively fighting this battle.  It’s hard to look past today, for in the past when I have, I’ve just ended up disappointed or with more questions.  So, to survive all of this with some sanity, I have learned to take things one day at a time.  As I’m typing this, I realize it sounds depressing…..which I’m not!  This letting go has  really allowed me to enjoy just being in the moment, which has been so freeing for me! Before Stanton I was a planner and very “type A.”  He sure has taught me to really let go, go with the flow and be flexible!

Speaking of being flexible – he’s awake from his nap, crying and gagging…I’ll post more when I can!