Tonight I held Isabelle for a little while after she had her bottle. Stroked her hair, played with her little fingers and held her tight. In preparation for our charity golf outing tomorrow, I had read a few pages of a mother’s blog about her son Jasper. Jasper was a boy born with a variety of complex CHDs and had multiple surgeries. His devoted parents were by his side and gave him such love and care I could not stop going through the posts. People always say stuff to me like “You are doing an amazing job with her- she looks amazing!” Well, what choice do we have? Of course we are going to fight for the best care, look into every option and educate ourselves so we can be her advocates. That is certainly what this heart mama did. And heart dad. 

I won a foursome at a golf fundraiser for the Children’s Heart Foundation. It is being done through this boy’s foundation, Jasper’s Heart. Jasper passed away in February of 2010. We didn’t have a chance to meet him. He shared our cardiologist. I read his mother’s beautiful posts about her incredible son and saw that we had similar experiences with our fetal echos. 

After I read her stories I began to think about our shared medical people. All of their energy, their devotion to finding answers for our children must be exhausting. All that investment and then to lose a patient. Getting hopes up with some success but then there is the flip side that carries loss. I thought of Dr. Levine sitting across from me with her sketches of what our baby’s heart should look like, and what it appeared to be. Her candor when describing the disease, her honesty about the surgical statistics. She did not paint a morose picture and kept talking about her patients’ lives. She gave us hope wrapped in facts. 

And Dr. Emani. His new techniques stemming from a desire to help our children thrive in spite of what anatomy was given to them. He not only invests time, energy and care, but also his physical being is what sews them into living. How he must feel when one of his patients loses the battle he tries to win daily. 

We all feel so sad for parents who lose their beautiful children. I know I have yet to meet Jaspers parents, and I already feel as if I know them. Her tears were my tears. Her joy at his joys made me smile. And when I read that he had passed away unexpectedly in February of 2010, after I thought of their devestating heartache, I thought of Dr. Levine. 

Dr. Levine loves my videos, chats with me about Isabelle’s progress and I have no doubt that she cares for our daughter on many levels. Dr. Emani went out of his way to say hello to his patient as we were registering for her MICkey button replacement. He told me how pleased he was with how she was doing and how he talks with Dr. Levine about her. Dr. Lightdale, her GI, makes sure we are 100% comfortable before she moves onto the the next (and if we aren’t, she has stayed with me to answer my concerns or tells me she will be right back). All of these professionals, including the many nurses and our dear NP Alison, all have invested love, energy, care and hope into our fighter. Any loss is their loss too. When one child loses the fight, we all lose. 

I cannot wait to meet these wonderful people tomorrow and to honor their son by playing in his tournament with my husband, my cousin and her husband who also has been touched by congenital heart disease. 

 

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