Tears

Valentine's Day.......The day my grandmother (I never met) was born.....The day I got engaged.......all good things to celebrate. After 2008 Valentine's Day took on a whole new meaning. It is the big finale to CHD Awareness Week. It is National Donor Day for organ donation. Celebrations that meant nothing to me until a doctor I had never met told me my child was born with a congenital heart defect, there was no medical reason that she was alive and that they were going to stop her heart repair it and restart it to save her life.

About ten weeks after Madelynn's life saving surgery I was driving home from a support group meeting for heart families and I just cried. I was completely alone in the car, I could barely see my eyes were overflowing. I had had enough. I couldn't take another hit. Madelynn had been in and out of the hospital 4 times in those 10 weeks. She had a collapsed lung, strep pneumonia, she wasn't eating and lost so much weight she was almost admitted a 5th time for failure to thrive. When I reach a point of stress capacity I cry. This was my CHD rock bottom the darkest place I have ever been.

Finally someone found me, heard my cry for help and took control. Thank you Dr. Sliz (Madeynn's cardiologist)!! With his help, weekly monitoring from the pediatrician, and a lovely nutritionist Madelynn was on her way back. In my mind back to the healthy chubby baby she once was. But that never happened. Every time Madelynn even caught a cold it was five steps backwards for us. Even today Madelynn will be nine this year and weighed close to 48 pounds. Last week she caught a stomach bug, she lost 3.5 pounds and it took almost a week for her to gain her strength back just to get through the day.

Madelynn's heart is repaired not cured. It is filled with scar tissue from where part of her aorta was removed and spliced back together and two holes in her heart were closed. She has chest tube scars and jumper cable scars. Madelynn's heart was so small when her surgery was performed wires were inserted to act as paddles in case they needed to restart her heart again. The other end of the wires would have a battery attached if needed. This was the reality of being a family with a CHD warrior in it.

There have been other days that the stress has been become so great I just sat and cried. Appointment days when I hoped the doctor would tell me we were further along in her recovery and we weren't. Days I failed my heart healthy children because my heart warrior consumed every ounce of energy and time. I lost friends because they could not figure out how to just be my friend. I didn't need them to know how to walk this journey with me I just needed them willing to try. I have shed enough tears for three life times.

I used to think crying was a sign of weakness and I feel sorry for anyone who still believes that. I could never truly put into words the importance of crying and what an amazing source of freedom it is. A few weeks ago a new song was released called Tears by Matt Hammitt. Mr. Hammitt is a dad of a CHD warrior. I have been following his story since his son was born. He took his amazing musical gift and turned it into prayers and love songs to his son and their journey. Attached is the lyric video.

So today as we celebrate my grandmother's birthday in heaven, the anniversary of telling Phil I would marry him, the opportunity to bring awareness to Congenital Heart Defects and Organ donation I would also like to remind you crying is a great stress reliever. It is a great healing rain.

TTFN~