Today I found out that my son is in the very capable hands of the Children’s Hospital of Philadelphia.  I also found out that he has many more health problems than EoE will ever explain.  I look forward to the treatment that Brian will receive, but unfortunately that means he and my wife will be there for at least two more months.  Brian is officially not eating food and on a formula only diet from now on.
I miss them dearly.  When Erin called with the news I was glad that I was not near my co-workers and that I was wearing sunglasses.  You are right honey, I am dead inside, but this kind of situation would make a friggin’ robot cry.  I didn’t even cry when I got shot, but that’s a story for another blog.
I was most worried about telling Addi that she won’t see mommy for her first Feis (an Irish dance competition), back to school Mass, or the first day of school.  I did not want to see the look on her face when she received the news. But, like most kids, she is resilient.  She took it well and when I explained that she will be staying with grandma when school starts, her face lit up.  When I added that we were going to find some way to see Mommy and Brian, she was beaming.  Oh, to be six.
I am writing this entry because since I am emotionally stunted I will be able to get through this.  Erin has taken the news hard and it is too soon for her to find a catharsis in writing an entry.  I miss her and Brian beyond words.  It has been seven weeks and we are looking at at least eight more.  I know, in the grand scheme of life, we will look back and be glad we did this, but for now it just plain hurts.
My wife may not agree, but I am an optimist.  I see the end game here and know the sacrifice will be worth it.  Somehow, we will find the funds to pay for this and be a family reunited.  Somehow, I believe that we will find out what is going on with Brian.  Somehow, we will provide Brian and Addi the best “normal” childhood that we can.  I have also bonded with Addi in a way that would have never happened otherwise.  She is such a good kid.  With her I have leaned that cheerleading camp is too loud and cheery, swim lessons are great until someone poops in the pool, and I know what slip jigs, light reels, and hornpipes are (google it).  We have dates at Chili’s (she is like her Papa and requests the same table) and hike the mountain behind our house on the weekends.
Family, friends and co-workers have been immeasurably wonderful in their support, love, and day to day help.  My dad and stepmom have taken to reading books on microbiology to help understand what is happening and offer suggestions to ask the doctors.  My boss has been incredibly understanding.  My co-workers, friends, and family have helped us beyond repayment.  That goes for those in the Southwest, Midwest, and East coast.
As I wrap this up, I apologize for my scattered thoughts.  Erin, as one can tell, has an English degree.  I, on the other hand, have a degree that many players on our college football team also received.  I am also wiping away tears and just trying to keep it together here at home.
I love you Cutie and hope to see you and Brian soon.

3 thoughts on “Bittersweet

  1. I have often messaged Erin and ran into both of you at Phoenix Children’s Hospital when I was there with my daughter. I offer you the same hope and support because as I found quite often the husbands/dad’s are often not seen as hurting just as bad. Stay strong for your family, my prayers are with all of you.


  2. I must say I did see a big difference in the blog today. (snicker snicker). However the message is the same. There is an underlying love that is so incredibly strong between the four of you. As difficult as this is everyone’s focus is the same – the treatment, care and health of Brain. We all empathize with the family. Please know our thoughts are with you as well. Stay strong Matt.


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