We are in the second week of Heart Month and the beginning of Congenital Heart Defect Awareness week. I could tell you more about our journey. Sometimes the journey stands still in a brilliant silence that can not be photographed, drawn or even described very well. But I am going to try.......
The last few years have been a whirlwind. My 12 year old daughter has shown she has an amazing heart for sports. She is quiet and observant, the next thing you know she pounces and you are speechless. You are in awe at the gift that suddenly rises to the top. She has been on the A and AB honor roll, she plays the clarinet, soccer and basketball. The doors that have been opened for her leaves me silenced on a weekly basis. I demand the most from her and she delivers.
Last Spring Kaitlynn was in the goalie box in one of her most challenging matches to date. She is one of the smallest goalies in the league. But at that moment when the ball is sailing into the box she caught it. For a few seconds, before the sidelines erupted into cheers, there was a brilliant silence.
Throughout this journey I have a son who is a warrior, with a gentle soul and will always defend the weak. On the days he frustrates me the most and I want to just light my hair on fire, he stops me dead in my tracks. He is honest, almost to a fault, and would give the shirt off of his back if I would let him. He has the most amazing talent in Math. The way his brain works he can give you the answer before most are done writing it down. About the time I want to give in he reminds me why I shouldn't.
This season in basketball my son has truly struggled. Sometimes it was almost painful to watch and sometimes it included tears. I really felt like this was the end of basketball for him this year. In the last regular season game, it was the first minutes of the game Jackson was standing outside the rainbow, received a quick pass and sailed the ball up and drained a 3. For those few seconds, brilliant silence. Then the cheers.
The biggest surprise of this journey we were catapulted into a world that included CHD, Coarctation of the Aorta, extended repair, holes in the heart, possible months in the hospital, magazine cover, poster child, CHD Awareness video, Featured story on Social Media, Fundraiser video the opportunities have left us in awe and sometimes dumbfounded. Some days and weeks have left us physically exhausted either because we are fighting for her life or we are giving back everything we can because we are winning the fight against CHD.
The best part about Madelynn's story is the hope we can share with other families. Let's be honest in the world of CHD's some days hope is the only thing to cling too. We long for a normal day. We would barter for one 24 hour period that did not include a single hint of a CHD. The other day we were having a NORMAL day. We were tired and Madelynn asked if she could snuggle with me. What parent would ever turn that away? As we were laying in our brilliant silence, I realized my hand was laying on Madelynn's chest and her heart was beating in my hand. At that moment my world stood eerily still. I didn't hear anything, see anything nothing matter in that amazing, breathless moment all I could feel was my daughters heart in my hand.
As the outside world came back into focus, I was reminded of God's perfect timing that put every single detail in just the right place to save her life. I am reminded more times than not by others' journey that she is here for a reason and I must walk through every open door. You just never know who is on the other side to share your spectacular silence with.
About the time I could become very comfortable in a normal life that does not include CHD, I am whisked through a door reminding me: Hope is your purpose. You were never created for normal.
As we celebrate Congenital Heart Defect Awareness Week (kind of an oxymoron), my HOPE is that you find a little bit of NORMAL and can celebrate your BRILLIANT SILENCE.
TTFN~
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