Since Madelynn is so far past surgery, I started lending support to other families. I am part of a family support group that does what we call Heart to Heart matching. When families find themselves in the children's hospital, the Child Life Specialist asks the family if they would like to speak with a heart family who has the same or similar diagnosis. It is a great program and I love helping other families.
In most cases, I meet families after surgery. There is a lot of shell shocked and speechless families. Once the families discover I really did travel this road, they relax and ask lots questions. Reminding these families they are not alone is very important.
One rare time I spoke with a family after diagnosis but before surgery. The mom had a slew of questions and I was able to calm her fears. I was even able to warn her about the first time she would see her child after surgery. This is something I wish someone would have warned me about.
The wires, tubes and monitor sounds can be disturbing enough but the sight of your child laying there lifeless, fighting for their life is almost more than anyone can take. I was not prepared for it and it almost dropped me to my knees. Days later the mother I warned, thanked me. She was so grateful I had prepared her for what she may see.
Sometimes lending this kind support to families can be emotionally exhausting. It is not easy but it is so desperately needed. When the support comes from another heart family there is a comfort there that cannot be explained. My only hope for doing this is to give the family a little peace in the chaos of the journey.
TTFN~
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