Dear John Paul,
It's 5 am and we've been hanging out for about 3 hours now. Yesterday you had a great day! We had a picnic lunch in the back yard, music and story time with Madie and Ben, and the day ended with a long snuggle with daddy during "family movie night".
Last week we met with the doctor to discuss your MRI results. You have an increase in cerebral fluid in the ventricles of your brain. It seems that this fluid is replacing actual brain matter because you do not seem to be suffering from intercranial pressure. Those are some pretty big words for me, let alone a 9 month old baby so, another way of putting it is that, while we aren't exactly sure why, your brain images look a lot like an adult with dimensia. Your doctor expects you to have "moderate to severe cognitive delay". This is something that is not typically seen in kids with SMA but the truth is, kids with SMA don't typically get MRIs and you are dealing with a much more progressed type of SMA than most doctors are used to treating.
We are still working on getting consistant weekend nursing for both night and day shift so your dad and I have had a lot of quality time with you in the wee hours on Friday and Saturday nights. We are praying to get the help we need soon! With all of this beautiful fall weather starting---I am dying to get you out and about but it's hard to pull off when we don't get sleep.
This latest development with your brain being affected has been hard for me. It's not that I was really hoping you were going to go to Harvard and it certainly does not change how incredibly beautiful your life is...well...not exactly. Actually, it does change how beautiful your life is. In my humble and unbiased opinion, you just got a little more beautiful. You see, God is smart: He knows how easily pride can get in the way. Any little thing that we might attribute to human merit, we do. "He's so strong", "He's so smart", etc...but with you...we don't get distracted with all that. The power and beauty of His love is even more evident. You make it more clear that the true value of human life is not in the outer displays of human ability but rather the God-given power of the immortal soul to love and inspire love. So no, beauty is not the issue...I guess the reason this latest bit of information is hard for me is because it puts a little more guess work into what I can give you on a day to day, minute to minute basis...
Love you always,