Things that broke my heart in this lifetime
My son was born in 2014 with a heart condition called Truncus Arteriosus and had heart open heart surgery at 5 days old. He was my second born son and my ex-husband and I at the time were newlyweds. Clearly it was a rough time, and it still stings just writing about it. I honestly don’t remember how I survived those days. I still have a lot of residuals from that moment in time. I was often numb and cold. I thought at the time I was feeling but looking back I realize I was in complete shock and survival mode. So much about that time I didn’t understand and probably never will but almost 10 years later I am starting to realize more and more that although I did have a support system, some others were the complete opposite of supportive. I do realize that in a situation like this not everyone will know exactly what to say or do and that's ok. I also realize that birthing a medically fragile child can bring out the best and also worst parts of life and what it all means.
I had been a nurse for almost 10 years when my son was born and felt in some capacity that I was prepared for his complexity. All this time later I realize that is not true. He has changed me in so many ways and I am an even better nurse because he exists. The condition I saw my son in after his open-heart surgery still gives me nightmares. Surely a baby should never have to endure that level of trauma at such a early age. I still wish I could have taken his place during that moment.
Because we knew prior to his birth that he would be sick a lot of people had varying opinions on how we should handle having him. Being offered a medical abortion some opinions were we should take the opportunity because who would want to have such a burden to bear. One of these very strong opinions came from my ex-grandmother in law. This same woman came to the bedside of my son AFTER he had endured open heart surgery and was healing to go home, along with her daughter my ex-husbands aunt peered over his crib with her nose up in the sky stated boldly “Oh he’s alright at least it’s not as bad as you guys thought it would be”. Let's dissect that comment “not as bad” was a stab at the doctor's information that stated that generally babies born in my son's condition were born wheelchair bound with complex delays and multiple disabilities. That ideally, they could have multiple other diagnosis possibly genetic that also contributed to his heart defect. So, in summation the fact that my baby boy was nothing short of a miracle meant that in fact things weren't so bad. A total disregard of the pain and heartbreak that both her grandson and I went through to bring this young man earth side. She ended her visit by leaving a bag of vintage used blankets and clothing (stained and dingy) in a trash bag at the bedside with no commentary. From that day to this neither of these women have had a relationship with my son past Hi and Bye, have never done anything for him and have never in any way made me feel I was supported or understood as a woman.
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I could tell you of so many other moments I have had with individuals during this lifetime that have changed the way I view people, but I digress. I am sharing this story in honor of heart month and as a reminder to myself and others of the pure gift that my son is to this earth. My son doesn't know what it's like to have normal heart. He lives his days not knowing how he will feel or what treatment or procedure is to come. Yet with all that my son is the most fun-loving, happy, encouraging individual I have ever met. He shows more love than I have ever seen from any adult including myself. He is considerate and kind and ever so insightful. I won't allow this moment in time I experienced to make me cold however I hope that it can serve as a reminder that words and actions can leave an imprint in the minds and hearts of people for years to come. Who knows what the intent was behind that interaction but truly for me in a moment when I was already so vulnerable it shattered my heart into a million tiny pieces.
