Preparing for Boston

Those of you that have found my blog from one of the Do Lifer site(s) are probably thinking a whole different thing when you read the theme of this post.  Unfortunately, in order for me to run the Boston marathon, I would need to drop about 4 hours on my marathon time and at least 100 lbs – more on that effort later, but first:

 

We are so very busy trying to get all of our ducks in a row (and celebrate some last minute pre-Christmas celebrations) before we leave for Boston early Monday morning.  I have to admit this trip is a hard one (I guess most of them have been at this point).  I know that the team at Children’s Hospital of  Boston is amazing and only looking to do what’s best for Gracie, but I can’t help but be scared that we are pushing our luck having her 4^th open heart surgery in just over a year.   Whenever she comes home after an extended stay in the hospital, it takes awhile for her to relax – She doesn’t sleep well at all  - it’s as if she stays on guard every night, just waiting for the next doctor or nurse to come in and try to draw blood or take an x-ray, etc.  These last couple of days have been great – she has been such a happy baby and has slept so much better.  It seems that she is finally just getting over her latest trip to Boston in November and here we sit, just a few days from going back - this time, not just for a small procedure to see how her heart is doing, but for another major open heart surgery.  I know kids are resilient, and all of this stuff happening so early on in her life is the best for her, but I can’t wait until our little girl gets to a point where she doesn’t have to have a major surgery every 3 months.  We have been so excited to see how well she has been doing and the thought of taking any steps back is very difficult.  We will be fortunate enough to be able to go to Lylli’s Christmas dance recital this coming Sunday afternoon, but unfortunately Gracie’s surgery, next Wednesday is on the same day as her Preschool Christmas recital.  It just breaks my heart to not be able to be there in the crowd for her.  I am crushed to know that she won’t find me in the crowd and tilt her head to the side and do that little bite the lip smirk as she stands up there with pride singing Christmas songs for her daddy.  Gracie, Carrie, and I are going to Boston on Monday – it is especially hard this time for me to leave Lylli behind – She means everything to me and the thought of her missing her mommy and daddy is hitting me especially hard today.  Fortunately, my amazing in-laws will be bringing Lylli out to be with us over Christmas.   We are moving from the Hospital family housing for a couple days when they arrive to stay in a hotel near the hospital.  On December 15^th, last year, I was praying that I could have my family together at home on Christmas day.  This year, being home isn’t important  -- I’m just praying that God blesses, once again, the hands of Gracie’s surgeon Dr Pedro del Nido and his team to fix Gracie’s heart . Sure, this Christmas will be spent in the hospital, dinner most likely prepared in the kitchenette in our hotel room, the important part is that we will be together.