Dear John Paul,
It is 2:30 am and your father just went to bed and I am starting my shift. We haven't had a nurse to care for you since Wednesday night and won't until Saturday night. We're tired, but you are worth every minute and more. If ever there was an argument for having big families...you are it! We have been so blessed with such an amazing family and the extended family of friends that comes with it that have been so critical in helping us take care of you. I hope some day you will be able to appreciate how much generosity you have inspired in so many.
Believe it or not, your dad and I both had a feeling that some day we would be given a child with special needs. We had never heard of SMA until you were diagnosed, so that was not what we had imagined but I would say starting with my pregnancy with your sister Madie...I had the distinct impression that I should be prepared for a child with special needs...I thought perhaps a child with Downs Syndrome or cerebral palsy since those were the ailments I was most familiar with. Towards the end of my pregnancy with you, I impulsively felt the need to visit a church to pray for the your health...before you were born. While I have tried to visit Jesus in tabernacles for a long time...I had never actually done so with the specific intention for my unborn child until you...although I probably should have.
I guess what I am trying to say is that, when God asks something special from you...he also gives you the tools and the grace to do it. If ever you are sad or overwhelmed with a struggle you face...I hope you will remember to ask God for that strength....His yoke is light...
I can't wait to hold you again...I went from having a cold to not having enough help from nurses that I haven't been able to hold you in several days...I hope we will be able to have a good long snuggle soon!
I love you so much!