Tonight, I learned that another child lost their fight with Congenital Heart Disease. I checked my phone after meeting with friends and saw the terrible news spread across Facebook. Someone asked me what was wrong and without taking my eyes off the screen I whispered that someone just lost her son to this horrible disease.
This is hard. I thought other things in my life were hard but no- the reality that our children are with us for the grace of God is overwhelming. We are so fortunate. I don’t think people realize how fortunate we really are to have Isabelle do as well as she is doing. It is more than a gift. It’s more than a blessing. The only word I can say is miracle.
Ryker’s family set up page on Facebook called Miracle Ryker. He personified the word ‘miracle’ and lived when many medical professionals didn’t think he would. In spite of the complex defects he had he smiled, knew joy, loved his family and knew love in a way most people never see. His parents flew him across the country to receive the best care. They never left his side. His siblings came to be with him. I remember seeing pictures of the whole family in his room on 8 South. You could feel their love for him just by viewing the picture. Amazing.
If nothing else, CHDs have taught me to never take anything for granted. To breathe in every moment as if it wasn’t going to last. I have learned that I have an empathy for people I have never met. I never had the pleasure of meeting Ryker’s parents. I saw them when we were there many times but as most hospital parents are, we were lost in our own thoughts. During one of our inpatient stays I knew they were in the ICU and asked if she was up for a visit but the mom had no idea who I was so I passed along a message instead.
I am meeting some heart moms tomorrow for the first time but I feel like I have known them for years. We have gone through pregnancies together, surgeries, recoveries and complications together. When one of us is inpatient, the other checks in. I have no idea what this woman looks like, but I know she knows what it is like to stand over the crib and hold the breath while waiting to see if the chest is rising. She knows what it feels like to try to fit onto the stupid cot and only have one pillow. Or be aggravated that the CNA wants to take vitals NOW just as she went to sleep. And I know she totally gets the insanity of pumping breastmilk. We shared many of these fun heart mom events with good humor and tears. I am looking forward to meeting her and another BCH mom whom I have also been following.
If nothing else, Isabelle’s heart condition has taught me that there are silver linings in this crappy CHD world we were thrown into. Isn’t it a gift that I can have such empathy for a woman I have never met? The ability to connect with another human being on such a deep level is a blessing. Living in a hospital setting, hoping that you will be able to leave with your child in one piece, is really hard. It is even harder when you see another mom be denied that chance. It does make you hold your babies tighter, a little longer, and never let them go.