Madelynn will always have heart disease and she will always be a CHD baby. For a long time that is what defined her, that was our whole world. As Madelynn has grown, life has been less about being a heart kid and more about being a kid. Life used to be all about her medications, her specialists, what she couldn't do and what she had to do.
Life is much different today. My heart warrior still exists but she exists in a new persona. She is a princess, a soccer player, a computer gamer or a basketball player. She wants to try everything and her world has no limits and she has NO FEAR!!
This is the ultimate goal every parent wants but heart families yearn for normalcy or their idea of it everyday.
Madelynn and her journey has changed us forever. She gave us a new vision of what we wanted out of this life. As hard as it is, I love helping other newly diagnosed families. Whether it is as simple as telling them all of this is "normal" for a heart kid, giving them a much needed hug or reminding them they have the power to be their child's advocate. Some families I meet once, some families I have known for years. Without Madelynn I would have never understood this empowerment or known how important it is to share with other heart families.
Don't get me wrong Madelynn still has her struggles. She still weighs less than 40 lbs, food is still the enemy, she still has problems with her lungs and her heart still has to be checked for the rest of her life. They are just that struggles,we don't let it define her. At least we try not to.
The other day Phil was looking at the soccer schedule and the age groups. He told me there is no group for Madelynn. I asked him if he was sure about that. He told me they only have a U7 group. I laughed and said, "Phil your daughter is going to be SIX she belongs in the U7 group." As surprised as he was by my answer I was just as surprised as it came out of my mouth.
As Madelynn celebrates each birthday my heart is filled with more and more joy. She beat some very grave odds. She reminds me daily that everyday is worth fighting for. God had a beautiful master plan when there was no earthly reason she should have been born. Madelynn changed everything for us and we are better for it.
Happy 6th Birthday Madelynn!! Thank you for making me a better mom and person. Thank you for being that shining light that sometimes is just what people need. Thank you for reminding me everyday there is always something to smile about.
Love, Mama
TTFN~
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