It's Been Awhile

Thanks for all of the kind wishes, cards, phone calls, emails and prayers that everyone has sent our way the last few weeks. It means so much to us, and we are so flattered by the enormous group of people that have responded with support! Sorry if you have been expecting a response and haven’t gotten one. As I mentioned, we have been amazed at the number of people who have responded, and have fallen hopelessly behind on thank you cards. Please know that your support means a lot.

We are learning about the whole grief process. There have been lots of ups and downs, thinking about how wonderful those 4 days were with Noah, and how much we miss him, and the dream of what life would have been like watching him grow up. There is a lot to miss and feel sad for. We are both getting grief counseling to work through all of those issues, and it is just going to take some time. No one can take the pain of this away from us. It is just gong to hurt for a while. The best thing that family and friends can do for us right now is:

1) Help us keep busy doing things that we enjoy. Go for bike rides with Chris (if you are a cyclist), or take me to a movie or lunch or shopping, etc.
2) One of the harder things for us has been large social gatherings. What we have been through is all-consuming. It is all we can think about. Trying to be “normal” and hold regular conversations about other things hasn’t been easy.
3) Don’t be afraid to talk with us about it. We love Noah, and he will always be a huge part of our lives and family. We are proud of how we brought him into the world, and the time we got to spend with him. Say his name – it helps validate his short existence for us.
4) Don’t give up on us. We may not be the best friend/family member for a while as we have good and bad days. We may not always be good about returning phone calls or emails, but keep calling and emailing. Even if we don’t get back to you, the message that we are still loved and cared about is always so great to hear.

The funeral was a little over a week ago, and Chris and I both want to thank everyone for coming. We were so pleased with how everything turned out. It was a beautiful farewell to such an amazing little spirit. If you missed it, I will post below some of the things that were read. I wrote a letter telling everyone about Noah, and we played a song from the Dixie Chicks that I had listened to with him if you are interested.

The Children’s Hospital in Denver has been such an amazing resource. They have bent over backwards to return our phone calls and spend tons of time explaining what has happened and offering support. The geneticist whom we have been working with, for example, was on vacation in New York City right after Noah died, but she gave us her personal cell phone number, and would call us back from the airplane, the middle of Yankee games she was attending, etc. His case means that much to them. They are such a dedicated staff! They have at this point successfully extracted some good DNA samples from Noah’s blood and we are a week or so out from having a confirmed, final diagnosis of his MCAD deficiency. Once they have that, then Chris and I will drive to Denver to begin our testing and genetic counseling.

This hospital specializes their genetic research on how to treat children that have these terrible metabolic genetic disorders. For MCAD specifically, they have developed treatment plans that keep children alive and healthy. They are able to successfully treat 90% of the kids they find that have it. It does take a lot of special care and attention, and it takes years, but there are good treatment plans available. Noah’s case is rare and particularly interesting to them because less than 10% of MCAD children get sick and die within the neonatal period. In Colorado, it has been 2 years since this last happened. They are eager to study his DNA to try to learn what happened, and why it manifested itself so early. There is very little research published on this, and maybe they will get some good information that can help others, and prevent it from happening again.

We are extremely appreciative of the donations that have been made so far to help these folks along in their work. I can’t stress enough how fabulous they have been to us, and how important this research is. They are doing everything they can to prevent this from happening to other families, and it has been such an incredible comfort to us to try to turn our bad situation into something that can help others. If you have been meaning to make a donation and haven’t yet, the address is below.

The Children’s Hospital
Inhertied Metabolic Disease Clinic
Attn: Noah Robert Wilkerson Fund
13123 E. 16th Ave, B153
Aurora, CO 80013
www.thechildrenshospital.org/conditions/genetics/index.aspx

Again, thanks for all of the love and attention that you all have sent us. We will try to continue to post updates from time to time to let everyone know how we are doing and what we learn as we go along. We are grateful for each of you, and couldn’t do this without all of the help and good wishes sent our way.