Dear John Paul,
This has been a very busy week with lots of positive developments. We have started with our new agency and while not everyone is trained in yet and there are already some who haven't worked out, we have made huge progress in that we have a wonderful nurse to cover weekday nights for us now. Your father and I actually slept three nights in a row this week...we feel very spoiled!!! We will train in the weekend night nurse for the first time tonight so... here's hoping!
John Paul, when we face your life, it is very natural to start thinking about eternal life also. Even though Jesus tries to explain in parables in the Gospels how wonderful heaven is (the pearl of great price, the wedding feast, etc..), I know I am often tempted to value it, only in lieu of the alternative. For some reason, I have a hard time getting excited about the unknown. I know I have a long way to go, and when I truly love our Lord as I should, have a true friendship with Him, then I will really desire heaven for the reasons I should.
That being said, I think you have helped me take steps towards that goal. While it is certainly not as noble as love of God, it is better than fear of hell: I can't wait to go to heaven because I know that in heaven...there is no illness, infirmity, no SMA. I can't wait to see you struttin' your stuff in a totally healthy body.
My experience with you has also given me hints at how awesome heaven will be for another reason. I believe in the saying "you get what you pay for." Christ payed a huge price in order for us to get to heaven--he died on the cross in order to make heaven a possibility for us. The catch is that Christ expects us to do the same in order to accept his offer of heaven...John Paul, your cross is not small...just like all of us, Jesus is asking you to lay down your life, to co-redeem...but since you get what you pay for, if you agree to offer your suffering to God, to make up for sins--even ones you didn't commit (maybe ones your mom did)...not only will you do so much good with your amazing life here on earth, your life in heaven will be better than you or I could imagine...better than being an Olympic athlete, better than all the things you wish you could do here on earth combined.
So how do you do this work of offering your suffering to God? Pick the things that you don't like--maybe suctioning or chest PT or nebulizer treatments and when it's time for one of those things...smile (even if no one else can see it) and think to yourself, "This one's for you Jesus--to help my brother Ben get to heaven, or Joe, or Mom." And then, you will have done work that is more valuable than any billionare CEO has ever done.
John Paul, I'm writing you this when you are only 6 months old and I am under no illusion that you could do this now....but I pray that the day will come that you can read this, and if you are old enough to read this, you will be old enough to do this....and since we never know what opportunities we will have in the future, and since this is the most important lesson I can teach you...I figured I better get started early.
As always, I love you with all of my heart,