I took a few minutes to view the movie I made for one of our fundraisers a year ago. We have come so far in one year I don’t know where to start. Isabelle is doing incredibly well and acts more like a typical toddler every day. Her delight in recognizing various objects around is contagious. “The MOOOON!” She yells and points to the sky. I will never get tired of hearing her big little voice. She can point out every object in the room and it won’t get old. She is thriving in a way I never thought possible. I never thought I would see her climb the stairs with such vigor or a ladder on her swing set over and over again. I never imagined her running, hitting a ball with a bat, or dancing to the Backyardigans theme song in the living room.
When I was pregnant with Izzie I was in a constant state of fear. The “What Ifs” plagued me throughout the day and I did everything I could to apply the principals of my recovery to the situation. Staying in the day, staying in the moment. Being where my feet were. Looking down and making sure I was where my feet were. I stopped going to the meetings that helped me in the past. I stopped hearing answers to my problem. I began to try to deal with this on my own. I severed my spiritual connection the minute I found out about her heart. My thoughts would go back to the night I sat in a synagogue and asked for a healthy baby. Tears would flood my eyes as I thought we were given one that may not make it to their first birthday.
Once again, the Universe has decided to prove me wrong again. Not only did she make it to her first birthday, but now she has made it to her second. Two years she has been in our family. We have enjoy another year of smiles, joy, hugs and milestones. We have experienced heartache, pain and loss this year. We had a fundraiser that went beyond my wildest dreams and raised over $13,000 for Boston Children’s. People came out of the woodwork to support us and Izzie. It was an incredible experience and one I hope to have again. Only maybe this time, without the police coming.
If you told me the blessings I would receive from having a baby with such a severe heart condition that surgery would be essential to save her life, I wouldn’t have believed you. Never in a million years would I ever think that I would consider HLHS a blessing. It kills hundreds of babies a year. It devastates families, and robs them of their beautiful toddlers and children. It puts them through such suffering you wonder how much more any of you can take.
It also brings families together. It has taught me to enjoy every moment with my girls and to take steps to ensure that I can enjoy every moment with them. It has forced me to take care of myself and my recovery. It has given us a child whose joy for life is so contagious you can’t help but smile when she is in your arms or presence. I have learned to give meds, O2 saturation levels and surgical procedures that people sometimes mistake me for a nurse. It has given me strength I had no idea existed within me. It has allowed me to walk through situations I never could have imagined before. It has given me a level of empathy I feel blessed to have, and I love being there for my fellow Heart moms out there in the Heartland. It has given me friends I have never met, and some I met for the first time picking them up at Logan Airport. It has given me opportunities for service- such as passing along my experience with different procedures that I can share with new HLHS families.
I have gotten so much from Isabelle these past two years I can’t fit it all on one post. HLHS has robbed her of a half a heart, but it has given so much in return. Not a fair trade by any means- I would much rather her have four chambers than to have her undergo three open heart surgeries any day. It is not a diagnosis anyone wants to have or hear. At the same time, I consider myself fortunate for the blessings it unknowingly bestowed upon me. She truly is a blessing in every sense of the word.
hopeinaheartshape 