Day by Day or Breath by Breath

Day by day or breath by breath you will make it through, as hard as it may seem. I was inspired, yesterday, by a nice lady on the phone with my insurance company. I called to check and see why only half the normal amount had been taken and apparently last December they sent us a check that never got cashed, then it hit me: December 11 was the date the check was mailed. NO WONDER! " I know why that check never got cashed. My daughter went into the hospital on the 13th", I told her. Of course her response was "I hope everything is alright with her.", and so we got into the conversation about Scarlett and her loving, mended, little heart.  I went on telling her Scarlett's story, that part of it anyway, and as she said to me "You are an inspiration to me, with the sheer joy that comes through when you speak, you should write a memior", it almost brought me to tears. I am glad that through this time in our lives where we can mostly live day by day, our story and our strength can be an inspiration to complete strangers. I then told her about a letter that I had seen in the entry way to the new Cardiac Intensive Care Unit at Children's National Medical Center. It was a letter from a website called aparentsletter.org, it said "...the tears will flow, they must, but what your child wants to hear from you is your laughter, a conversation (even if it is with the nurse on how their day/night is going), they want to hear YOU..." That day that I read that letter was one of the hardest days and the end to one of the hardest weeks of my entire life! That week on December 15th Scarlett coded and had to be rescusitated and intubated, two days later on December 17th (our 7th wedding anniversary), we were told that our four month old baby girl was in need of a new heart and that we were now going to be in the process of getting transferred to CHoP (Children's Hospital of Philadelphia, BTW hope really does live there!). Back to the story, the end of that week I walked into the new unit looking for the social worker and stopped to read that letter and that day I decided I was going to be happy, no amount of tears I cried or worry I burdened myself with would change a thing and things definately could have been better but they also could have been worse. Scarlett didn't want to hear me pouting or crying. She wanted me, my laughter, my singing to her like I always did.

I won't lie, even to this day there are days that are hard,that I take breath by breath or hour by hour. I do cry, I scream even. Everyone has a point where they just can not take anymore and they break. This is where a good support system comes in, they pick up the pieces and put you back together. When I am struggling or having a hard day emotionaly all I have to do is look at her and she smiles at me and I think, "If she has a reason to smile, so do I. Cheer up Buttercup!" I do not deny that we have been down a long road and still have a long way to go, but we are walking it together as a family and accompanied by some great friends and extended family, sometimes I feel like we are blindfolded, walking backwards, near a double sided cliff, but we get through.

Scarlett update: She is doing well, we have a cardiology visit next week I will update more after then. For now, at her 15 month well check she is 21 lbs 10 oz, 68cm long. She is growing like crazy, still has no teeth, is finally babbling, is scooting around on her bottom instead of crawling but is surely wanting to crawl, and still no progress with eating, she still gets 100% of her nutrition through her G-tube. She is also still the happiest baby I have ever met.