Maggiepaws

Friday, July 17, 2009

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.

Letter written for the funeral...

Chris and I want to thank everyone for coming and supporting us today. It means more to us than we can say.

One of the hardest parts of this for us is that very few people got to meet this amazing little boy who has changed our lives forever. We’re pretty proud of him. We don’t want to hide him. What happened was a completely unexpected tragedy, but we love our son and want to share him and the story of his short little life with as many people as possible.

I know all parents are pretty biased towards their children, but I must tell you, Noah was the most beautiful little baby we have ever seen. The pictures hardly do him justice! We couldn’t take our eyes off of him, and we hardly ever put him down. He had a beautiful head of brown hair that was so incredibly soft, and he had the most amazing toes! As you can see from some of the pictures, he loved to spread his toes out as far as they would go. We hated to cover them up, because having them spread out like that looked like it felt so good!

His birth was textbook perfect. In fact, it was one of the most amazing moments of my life. Chris and I trained so hard for it. We took 12 weeks of Bradley Method classes to learn the best tips and techniques for natural childbirth. We read lots of books, practiced a number of different relaxation techniques, and I followed a strict diet and exercise regimen to prepare. The entire labor and delivery took 10 hours total, and it went beautifully. We labored at home for as long as possible. I sat on the birthing ball and we watched movies as things got more and more intense. My mom drove us to the hospital when I was in good active labor, and we arrived in time for me to proceed onto transition and pushing stages. My father and two best friends Mary and Jenny were in the waiting room cheering me on, and Chris, my mom and doula Candace were right there with me keeping me focused until that beautiful moment when Noah entered the world. It was such a bizarre thing, finally seeing him after all that time. He was pink and alert and had plenty to say! We were just amazed at what we had created. In the end, we were grateful to have done natural childbirth with him. It was the very best that we could give him. Finding out later how compromised his system was, we were glad that we didn’t pollute it with extra chemicals and toxins. And, his blood samples that may be able to be used to save other infants is as clean as it can possibly be. What a gift to give to try to prevent other families from going though this!

Seeing Chris as a father to Noah was among the most touching of all to me. During his birth, Chris never left my side. He talked to me through the whole thing, keeping me as calm and relaxed as possible. I felt safe having him there. All of the hospital staff, doctors, and our doula remarked at what an amazing husband I had, and his incredible ability to get me through it. Once Noah was born, Chris stayed with him while they cleaned him up and did the initial examinations. I will never forget his face through that. I was still being cleaned up and put back together by the doctor, and Chris was with Noah. Chris kept looking over at me with this incredulous look on his face. You could just see the amazement and wonder as he completely fell in love with our boy right there. Throughout Noah’s short life, no one laid a finger on that boy without Chris by his side overseeing what was being done. Noah and Chris had a really touching relationship. Noah knew who his daddy was! If he was fussy or needed his diaper changed, Chris was right there to take care of it, and could get him calmed down just as well as I could. I fed and cuddled with Noah, and Chris pretty much did everything else, with great joy and purpose!

Overall, he was a very quiet and peaceful baby. He snuggled a lot with us. He slept with us, and made lots of wonderful cooing noises throughout the whole thing. We loved his noises. We would mimic them, and end up having a whole cooing conversation with Noah. It felt so good to hold him close and do this.

Favorite Noah Pictures










Godspeed Lyrics

This song was performed by the Dixie Chicks and played at Noah's funeral. I listened to this with him during the 4 days that we had him...

Dragon tales and the water is wide
Pirate's sail and lost boys fly
Fish bite moonbeams every night
And I love you

Godspeed, little man
Sweet dreams, little man
Oh my love will fly to you each night on angels wings
Godspeed
Sweet dreams

The rocket racer’s all tuckered out
Superman’s in pajamas on the couch
Goodnight moon, we’ll find the mouse
And I love you

Godspeed, little man
Sweet dreams, little man
Oh my love will fly to you each night on angels wings
Godspeed
Sweet dreams

God bless mommy and match box cars
God bless dad and thanks for the stars
God hears amen, wherever we are
And I love you

Godspeed, little man
Sweet dreams, little man
Oh my love will fly to you each night on angels wings
Godspeed
Godspeed
Godspeed
Sweet dreams

by Radney Foster

Monday, July 06, 2009

Donations to Honor Noah

We are the new best friends of the Denver Children’s Hospital. Shortly after Noah’s death, a Geneticist from their Inherited Metabolic Disease Clinic called us and asked if they could study Noah’s case to try to learn more about MCAD, the genetic disorder that Noah died from. This was a comfort to us – knowing that his life could maybe serve to save others. We immediately agreed. They will spend the next 2-3 weeks proving that that is what Noah had (and they feel certain that they will be able to do this, as Noah’s early test results show strongly that he had MCAD). They will then start testing Chris and I to learn more about why this happened, and what our chances are for giving it to future children if we choose to try again.

This clinic helps parents like Chris and I understand what happened, and use the results of their testing to try to prevent it from happening to other families. They also use donations to help families where they were able to catch the genetic disorder early enough, and treat affected children. There is expensive special formula that parents sometimes need to buy for babies, cell phone costs so that parents can contact the clinic doctors at a critical moment, reproduction of pamphlets and training materials for hospitals, etc.

If you would like to support this cause in Noah’s name, donations can be made to the following address:

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

Thursday, July 02, 2009

Funeral to Honor Noah Robert Wilkerson

Dear Family and Friends,

Words cannot even describe the devastation we are feeling over the loss of our son, Noah. It was just such a shock. We are taking a few days for some much needed time to grieve, surrounded by our families up in Woodland Park, and appreciate the kind wishes and the space to make sense of what has happened. At this time, it is too painful for us to discuss the circumstances of his death; just know he passed peacefully in his mother’s arms.

We are now beginning to make arrangements for a funeral to honor Noah. We plan to hold the event on Wednesday, July 8, at 2:00 pm. We hope that you will join us, as we will be ready to reconnect with family and friends after experiencing such a tragedy. We have enjoyed sharing Noah’s life with you from the moment we knew that he existed. Every last minute of his life was a blessing, from the pregnancy to the 4 wonderful days that we got to share with him. We would like to celebrate him with all of you.

Love,
Chris and Sarah

A Celebration of the Life of Noah Robert Wilkerson
Wednesday, July 8, 2009, 2:00 pm
First Congregational Church
20 E. St. Vrain St, Colorado Springs, CO 80903
Reception immediately following at Sarah’s Parent’s House (Directions Below)

FROM THE EAST:
Woodland Park is about 18 miles northwest of Colorado Springs on US 24 (Exit 141 off I-25)
Pass through the town of Woodland Park
About 2.5 miles west of the intersection of Hwy 24 and Hwy 67 - TURN Left onto Edlowe Road Hwy 67
Turn LEFT at Markus Road (the second road on the left)
Bear RIGHT when Columbine Road "Y's"
Follow Columbine for another 0.5 mile. We are in the dark brown house on the left.
If you reach the end of the road - you have gone too far. Turn around and make the first RIGHT.

Wednesday, July 01, 2009

A NOTE FROM SARAH'S FATHER:

We have really sad news to share. Last night our beautiful new grandbaby, Noah Robert Wilkerson, passed away. He was only four days old.

Although the final medical reports are not complete, it appears that he suffered from a rare genetic disorder called MCAD. None of us had ever heard of MCAD before. It occurs about once in every 15,000 births. If you are interested, more information can be found at http://www.fodsupport.org/mcad_fam.htm. What is clear is that he never really had a chance.

As you can imagine, Chris and Sarah are devastated. Their birth experience was textbook perfect and Noah was a beautiful little boy. I’ve attached my current favorite picture. One of the many sad aspects of this story is that we haven’t even had time to look at the pictures that were taken. Everything happened all too fast.

It is unclear when a service will occur. The coroner’s office won’t release Noah’s body until tomorrow afternoon (standard procedure for all infant deaths), and the holiday weekend probably means the everything will be pushed back until next week. Let me know if you would like more information.

In the meantime, Chris and Sarah are surrounded by the love of their families and ask for a bit of privacy as they work through their grief and the issues required to move forward. If you have an urgent issue, you may reach them at rlester@trgarts.com or (719) 351-0002

Rick Lester