• Benjamin’s Big Day

    Date: 2016.05.10 | Category: Benjamin | Tags:

    Here I am again sitting in a waiting room, praying for my child to make it through their open heart surgery.  This makes number 8 for our family.  Every surgery is different, they have varying degrees of complexity, some repairs easier than others, but every single time it is scary.   You can’t have your child’s chest cracked opened, have them placed on cardiac bypass, and think it is just an ordinary, run-of-the-mill kind of day.

    We are extremely grateful to be sitting in this waiting room today.  We never thought this day would happen.  When we first had physicians look at Ben’s file they were all negative.  They said there was nothing that could be done.  Ben had gone too long without a repair and his pulmonary hypertension had done it’s damage to his lungs.  Then when we were home, we got hope in the form of palliative surgery.  Then we were again given renewed hope by some mama’s on Facebook that encouraged us to get a second opinion.  That second opinion brought us here to Boston where we were told they could do a partial repair.

    Ben Ben

    Ben was been born with TGA, VSD, and an ASD.  His pulmonary hypertension kept them from doing the full repair because closing his VSD would likely lead to a pulmonary hypertensive event that would lead to his death. If Ben had been born in the US, he would have had surgery within the first couple weeks of his life.  His repair would have been complete and he would have gone on to live a relatively normal life.  Because he didn’t get the care he needed right away, Ben developed pulmonary hypertension.  His lungs were damaged.  His fingers very, very blue.  At the age of 5 when we were able to have Ben’s first surgery, he was unable to run around the couch and chase his siblings.  Today Ben is unstoppable.

    I have to admit it is hard for me because on one hand I want to stand on the mountain top and shout praise about God’s healing because I know that is what happened; but on the other hand, I am mindful of the parents who are praying just as hard and for some reason, they haven’t got the answers they were hoping for.   I was once the mother praying for healing for her sons and the end result was not what I had hoped for.  I even heard the words “Maybe you just didn’t pray hard enough.”   Those words cut me to the core 28+ years ago.  I know you can have great faith and still not get the answer you want.  I know that although God’s plan is perfect, it is hard to accept at times.  I know that joy and pain go hand in hand and that many lessons are learned through the hard road, but none of us really want to be on that journey.

    So today I am praising God and at the same time praying for those that I know who are waiting for healing.  I have seen too many babies die in the past year and I hurt for those families.  So please, if you are praying for Ben and his healing, please include the families that are hurting from loss today.  God knows their names and is holding them close.

    Rejoice with those who rejoice; mourn with those who mourn.  Romans 12:15