Before Jack first went into the hospital on May 10th, we thought that he was just running a little bit behind the other children and we were not going to work ourselves or Jack into a frenzy about keeping up with the Joneses.  We figured we let him get to those goals when he was good and ready.

Then, after we were released from the hospital without any diagnosis for his seizure activity and brain mass, we figured that he'd be behind other kids his age and that he might catch up at some future time say in a year, five years, or even ten.

When we finally had a diagnosis for Jack of Menkes disease on July 28, well, we weren't too concerned about goals much after that.  Except, I suppose, we always did, and do, wonder how much Jack would be able to do.  Jack did learn how to roll over... for a few days.  And, he did learn to sit up by himself in a Bumbo seat... for two days.  I suppose that one of the sad moments was when a close loved one called and asked encouragingly, "Well, is Jack sitting up now?" and I had to reply, "Jack's probably never going to get to sit up on his own."

However, I definitely had a bit of a change of heart when it comes to developmental goals just recently.  On Thursday, April 24th, Jack (who doesn't smile too often to begin with) laughed with great gusto three times.  I'll tell you, that was one of the best moments of my entire fatherhood and a moment in my life that I will never forget (especially as I keep replaying the video several times each day).  Katherine and I received a precious gift.

One of our (non-Menkes) friends told us how as his children were growing, it seemed like they would learn something and then move on as if they said to themselves, "Well, I accomplished that feat! Now, it's time to learn something new!!"

Maybe Jack will laugh again.  Maybe he won't.  But he definitely knows that he can do it and I'm confident that he's moving on to some new accomplishment.  I will be surprised, overjoyed, and encouraging when he gets there.

If you are a Menkes parent and wondering what your son may accomplish in his life... no one may know ahead of time.  I just suggest keeping low expectations while always being ready to be greatly surprised.  And keep a video camera ready.