When I decided to take on this project for Congenital Heart Defect Awareness Week I knew this post would be the hardest to write. I know when my moment of realization was and it wasn't pretty and I was completely alone.
Phil and I were told Madelynn's heart was damaged on a Sunday afternoon by an urgent care doctor who found it accidentally. Two days later Madelynn's pediatrician said he would make the appointment with a pediatric cardiologist. There was no real rush because Madelynn did not display any symptoms for her eventual diagnosis.
I had no idea what to do with any of that information.
So for 16 days I privately researched what little details I could figure it. Other than Phil we did not tell anyone. At some point during this time I sent out an email to immediate family telling them what little we knew. I did not want to talk to anyone. Because of the shock of the situation and I simply did not have the energy to rehash what had happened thus far again and again. It simply wasn't in me.
I am sure this sounds rather selfish but she is our daughter and our day to day lives being effected. I had so little control over what was about to happen to us, I needed to maintain our daily living with our children as long as possible.
As soon as we were told Madelynn's diagnosis, surgery expectations and after surgery prognosis, the cardiologist had some preparations to make and left Phil and I in the room with Madelynn. I told Phil I needed to call work. He kind of angrily looked at me and asked why. I told him I don't think I can tell this story more than once without crying. After I took care of business I could break down. But that never really happened. I was always having to keep it together.
The next day when I handed her over to the surgeon I thought I would break down then. Or when I saw her for the first time after surgery or the day her lung collapsed and we fell backward about 10 steps but it never happened. Not even when Phil and I finished telling our mothers and hugged each other. We just packed it all in and slowly started this journey.
About a week after Madelynn's surgery we were invited to a support group meeting at the hospital. We met several other families who had children with Congenital Heart Defects (CHD's). It was nice to know we weren't alone. The next month when this group was to meet again Madelynn was in the hospital again. Only this time the support group was meeting off the hospital campus so we missed that meeting.
Two months after Madelynn's surgery I had the opportunity to attend another one of these support group meetings. This time they had a guest speaker. I honestly can not tell you what the person spoke about or who they were. What I can tell you is I was at the bottom of the barrel. Madelynn had been in an out of the hospital, wasn't eating, she was barely gaining weight, every detail of this fight to help her survive and I was failing. When I walked out of the meeting, whatever the person said made me cry. I cried the whole 45 min ride home.
I had never just let go, accept what had happened to her and how it happened to her. I did not really allow my self to feel anger or sadness to feel anything really. That night I felt and relived every emotion completely alone. I cried harder than I had ever had in my life.
That night I accepted that we were a CHD family. I accepted that my plan for this life completely changed. I accepted the fact that I had no idea what tomorrow would bring. I accepted that I would fight until my very last breath for Madelynn to have every opportunity. The very next morning everything changed.
I am so grateful we made it through this stage. Never Stop Fighting!!
Happy CHD Week!!
TTFN~
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