Once I was told surgery was over there was a huge sigh of relief, a weight lifted from my shoulders, all was well with the world! But then when I saw his little body, carefully put back together, badly swollen, I knew my nerves were no match for the pain I saw on his sweet face. I'll never forget walking into his room and internally having a mini panic attack, but not wanting to get kicked out of his room while he was made comfortable, I did my best to stay calm.
As a mom you have no choice but to swallow those very tender emotions, pull-it-together and carry on. We spent 6 weeks in the hospital as he slowly recovered. During those 6 weeks it was determined that he needed a pacemaker to ensure his heart rhythm stayed consistent, and he ended up having yet another surgery during that hospital stay. All this and he wasn't even 6 months old yet. Welcome to the world, little guy!
Looking back, I'll admit I had moments when I'd see other moms with their babies and feel so sad at the "normal" moments Josh and I were missing out on. Simple moments like holding my newborn in my arms, snoozing together on the couch, bathing him, trying new baby clothes on him, going on a walk to the park, going to church and showing off my cute new baby. There are so many "normal" moments that we missed, too many to list, too many to even realize.
Honestly, those thoughts have (and still do periodically) cross my mind, but the thoughts that more frequently occupy my mind are thoughts of gratitude. I have so much appreciation for Josh and all that we've experienced. I have so many sacred memories of the joys and the pain, I wouldn't trade them. I also really appreciate how well he's done over the years. There is not a child with Hypoplastic Left Heart Syndrome who doesn't have their own unique challenges, I feel like our challenges (though difficult) have been bearable and have taught us many lessons. The perspective that we have thanks to these experiences is priceless. Sure, these are lessons I wish I could have learned in an easier way, but I'm grateful for the perspective.
Today's anniversary just so happens to fall on Congenital Hear Defect Awareness Week. In general I don't recount these events often because it's hard. But this week I always like to do what I can to make people aware of the astronomical number of children born with heart defects & the need for more research and funding. I'm partial to UCSF because they are miracle workers and have helped give Josh a very high quality of life. We have been part of countless studies over the years with Josh and I know first hand the good that comes from these amazing people and the work they do. So if are in a position to donate to a worthy cause, please do! And help spread awareness anyway you can!