Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Tuesday, August 27, 2013

T+29 - T+33 Time for a pity party!

Again it's taken me a while to post.   It's hard to keep writing about the ups and downs of this process.  This past week has been a lot of "downs". Coleson can't get rid of his upper respitory infection leading to constant nasal congestion, coughing and vomiting.  He has been put on more meds and we are doing several hot shower "sauna" treatments along with a lot of nasal spray.  He was put on Levaquin yesterday which has it's own side affects and we have to stop g-tube feeds 1 hr. prior and after giving it to him, twice a day.  In addition, his CSA level has dropped which is what fights off GVHD (graft vs. host disease) where the donor cells attack Coleson's immune system, and is horrible to treat and sometimes can't be....
On top of his health, many of our friends have left the RMH to go home.  This is good for them, but sad for us as we are confined to this place pretty much and we rely on the companionship of others to get us through.  With Peyton still in Michigan it made for a quite and lonely weekend.  Paul, Coleson and I took a drive around the surrounding river front neighborhood on Saturday.  I imagined myself living in any one of the Tudor style homes, drinking tea, not having a care in the world.  Then Coleson got sick and it brought me back to reality.  And reality bites!  (Isn't that the name of a movie?  I do my best to stay strong and all your texts, emails, calls, cards, etc. help.  But there are days that I feel sorry for myself and for Paul and for Peyton and most of all for Coleson.  Sunday was one of those days and was the first time I let done my guard to cry since we've been here.  It helps momentarily but not in the long run.  I question and doubt if there is a higher being.  If there is, i wonder why kids and families have to deal with crap like this.  I ask "why me" and "haven't I sacrificed enough."  My mom got cancer before I was 1 and was gone by the time I was 4.  The 3 years in between I barely saw her as she spent most of her days in the hospital.  By age six, my father started dating my step-mom who had a daughter (my step-sister) who has muscular dystrophy and I had a lot of resentment due to how that impacted my life.  (I got over this by the time I left for college).  Then when I was 33 I was diagnosed with complete heart block and now rely on a pacemaker to keep me alive.  And now this.  I feel a little picked on by the big guy.  I know others have had it worse off then my but there are also a lot of people who have not had to deal with shit I've dealt with too!  One of my best friends who also is a special mommy had someone tell her that she will have a nice place in heaven.  It's comforting to think this but at the same time I say screw the afterlife, what about my present life!  I just don't enjoy normal activities like shopping and my time on facebook is mostly spent reading up on other Hurler and BMT families.  And so I found a nice bench to sit on and had myself a pity party.  The party didn't last long as there is not a lot of "free time" in my days and I have to be super mom again.  
Paul left on Monday to go back to AZ for some meetings and I am actually a little jealous.  Not that he has any time to enjoy it, but at least he gets to escape all of the fun here.  It's just been Rachel, Coleson and I.  Now I used to think everything happened for a reason (yet to figure the reason behind Coleson's disease.). But there was a reason why Rachel came to nanny for us when Coleson was born.  She loves my kids and they love her and not many people would disrupt their own life for 4  months and live in the same RMH room without all of us going crazy! she has been a big help and has gotten puked on just as much as I have.  
I hope Coleson's congestion and cough gets better by the time Peyton gets here on Sunday.  He brightens up when we Skype with her and so do I.  It will be good to have her back with us again.    And I hope my pity party ends.   I usually take things in stride but this is a pretty big stride, even for me.  Your support is what agents me through this.