The Conference....

There are so many things that I would love to share with you about the conference, but I won't completely bore you all. Dr. Frim was speaking about neuropsych issues. He spoke about a study of children/adults that were 1 year post op and were asked to take a neuropsych study. Gabe was in those numbers. It was very hard to hear that your child is a statistic. I mean, we KNOW our children are statistics, but it is very easy to not see the revelance of their "stat" until you hear it spoken about at a conference. Frim also spoke about Failed Chiari Decompressions. (That would also be Gabe) and about how 4-5% of his chiari decompressions develop PTC. That is my son... My son is one of the 4-5%. While I KNEW that, or some odd reason, hearing it spoken about at the conference was just hard. However, the hardest point that Dr. Frim brought up was that the long term prognosis was not known for these kids. However it was noted that Spinal Cord and Brain Fatigue has been seen to happen in these kids as they get older and that spinal cord function deteriorates sooner (than in none CM/SM) kids.

You hear that and you look around the room and you see 20-somethings in wheelchairs and other adults in wheelchairs and you HOPE that is not your kid. Then you feel HORRIBLE for thinking that way. Friday afternoon when we walked out of that conference session Kristen, Cindy, Jenni, Kirk and myself just sort of looked at each other. I believe the phrase may had been, "Wow!", "My brain hurts", and heavy sighs. Jenni and Kirk mentally and emotionally could take no more, and they had to leave. I understand. I wanted to also.

I can tell you without a doubt that there was a lot of fear in us at that moment, but I think that there was more heartbreak. I believe at that moment while we always knew that our kids were not typical it really sunk completely in for the first time....This is not a ride that we get off. We will always been on this ride.

I cried Friday. In the hotel lobby waiting for Cindy to get back to the hotel so we could go to dinner. Kristen had never seen me cry. "You are always a rock". I was not that night. Jenni and Kirk had a rough time on the way home. Kristen was quite. Cindy, also.

For the rest of the conference there was a dark undertone. But Kristen and I plugged away and attended the rest of the seminars. I still have a sense of sadness when I look at my little ones.

Kristen, Cindy, Jenni and Kirk-THANK YOU for the great time!!! Cindy-you and your kids remain in our thoughts as Carson's decompression date moves closer. Jenni and Kirk-My heart breaks that you did not have better results from the MRI. We will keep you guy and Jacob in our thoughts and prayers. Kristen-you and Nic are in my heart. I will try to come and see you while you are in Chicago for Nic's revision.