I’m asked to write about my “Precious Noah” to show others the impact of having your grandchild born with Trisomy and I do it with great pride, but with much sadness also. It is hard to go back and relive all the emotions that were part of my life during that time. I know that it is important and I feel that Noah is right here with me guiding me with just the right words. Noah just has that way about him - he is always letting us know that he is still with us and as one of God’s precious little angels has a special edge. So with Noah’s help here I go:
The story begins with my daughter Kelli and her husband Craig. They were finally at a stage in their life where they felt they were ready to start a family. Things were in order. Their jobs were secure; they had purchased a home, had a golden retriever and now were ready to make me a grandmother for the first time. I was thrilled for I had been patiently waiting for this new chapter in my life. As a mother of four I didn’t think they would have a problem conceiving, but they did. Kelli was diagnosed with endometriosis and it was also discovered that her mucous was killing off Craig’s sperm. They proceeded with artificial insemination - they were on their third time - they even went to an adoption meeting - and then found out they were pregnant. The entire family was ecstatic. I proceeded to begin to act like a grandma immediately and started buying things for the baby. Next to my own pregnancies this was the most thrilling time for me and it was even greater for I didn’t have to go through any of the morning sickness. I could just totally enjoy and take it all in. Loved talking with Kelli about the baby and tried to be as involved as I could.
It appeared that the pregnancy was going well until about the 7thmonth. At that time Kelli’s blood pressure was high and she was getting horrific headaches. The baby did not pass the stress test and appeared small for its gestational age. Kelli was put on bed rest and was told that the baby appeared to have growth retardation, but said everything appeared fine. Things just did not seem to be “fine” to me and I called the University of Wisconsin-Madison. I explained to them what had been related to me and told them my concerns. They were wonderful and said they would be glad to see Kelli or if that was not feasible they recommended that Kelli have an amino. What I had told them would lead them to believe it could be growth retardation or a chromosome abnormality. Kelli related this to her high-risk physician, but was told in no uncertain terms that they were the experts and perhaps she should tell her mother to stay out of it. As this was Kelli’s first child, I understood her desire to want to believe that everything was fine. She felt that she had the “best” doctors and felt that I did not think she was capable. It caused some problems between Kelli and I, so I backed off. I was upset, but had no choice. As a breast cancer survivor, I am a firm believer in a second or third opinion. You need to do your own research and, yes, sometimes be your own physician. If a doctor has a problem with that then fire him/her and move on. Noah continued to fail the stress test and at one time told Kelli that he had hypospadias (I would have felt that another red flag was up). Kelli was just to remain on bed rest and was continuously told she was just going to deliver a small baby. Support and love is what I gave. It is so hard as a mother to watch your daughter go through this rough of a pregnancy. You so desperately want to make everything right and wished she could have enjoyed her first pregnancy as I had carrying her.
The phone call came on October 10, 2000 by my excited son-in-law. Kelli’s water had broken and they were on the way to the hospital. It was about six weeks early and I was in a total state of panic. I wanted to be there for her, but it would take some time to find a substitute for my daycare. I assured Craig that I would be there as soon as possible. My heart was pounding and the tears came. My grandson was to be born. Please let everything be okay. A neighbor came over and I was on my way. I picked up my son Andrew from school. He wanted to be there for the birth of his first nephew. Craig called as we were driving and the news seemed good. Noah was fine - just very small and had some trouble at first breathing. We were all in a euphoric state. Noah was just premature and things would be fine. By the time we got to the hospital, the nightmare had begun. Craig informed us things were not good and Noah was being checked over. There were certain things that were not normal and it appeared that he had some form of chromosome abnormality. Unfamiliar terminology was thrown at us. Specialists would have to be called and a chromosome work up done. They were not sure what we were dealing with. Genetics, neo-natal, words were spinning in my head. It didn’t seem real. Noah was so precious and already had made his way into all of our hearts. What lie ahead for this precious grandson and all of us as a close-knit family? In just a few hours all of our lives were changed, especially for Kelli and Craig. The only thing the family knew at that point is we would be there for them. Our family has endured a great deal and love has kept us going. Noah was now a part of us and we would be there for him with all the love we had. Noah was loved from the moment he was born to the day he died and beyond.
A few days after his birth Noah was diagnosed with partial Trisomy of 2p+. The days proceeding his birth were filled with so many emotions: love, denial, anger, fear of the future for him, why did this happen to Kelli and Craig, what lay ahead, why? Why? WHY? Many hours were spent talking with doctors, counselors, nurses, trying to get answers as to what kind of life could we expect for Noah, where do we go for help, was this genetic? You seek out the answers as best as you can and in the mean time you get your head together and let your heart take over. It comes down to it did happen and Noah is here. This was my grandson and what I promised him is that grandma would love him and spoil him for whatever time God granted him to be with us on this earth. And that is exactly what I did. I was given seven months to be his grandmother. It was both a special time for me and the hardest time of my life. Noah was the best first grandchild a grandmother could ask for. He exceeded all my expectations. He taught me love, strength, he always gave more than he expected to get, he showed me what a real fighter of life is, he showed me what real patience is and in the end showed us all how to die with dignity. Our little Noah didn’t have a long time on this earth, but how many of us with an entire lifetime can say we gave so much of ourselves and left showing others the true meaning of life. Noah left this earth on May 14, 2001. It is almost like he wanted his mommy to have her first Mother’s Day. That is just the way he was. I believe he also had a little prankster in him or perhaps just made a special deal with God for he didn’t leave us until he left mommy a surprise - a sister was in the making. Noah left leaving a miracle behind. He is a big brother to his sister Autumn Lynn who came into this world on January 5, 2002. And since writing my story, Noah has a little brother, Tanner Drew, who came into this world on September 17, 2003.
What are readers of my story looking for? I loved Noah as you can see. He was a part of me. I grieved differently than his mother and father to be sure, but as a grandmother it tore my heart out watching him suffer and endure so much in his little lifetime. It also tore my heart out to see my daughter and son-in-law deal with the death of their first child and see them grieve over what would never be. All their dreams gone. You are suppose to be able to protect your child from everything bad. It wasn’t possible to do that for Noah and it wasn’t possible for me to take Kelli’s pain away.
Would I wish it could have been different? Why of course. Do I wish Kelli and Craig could have been given choices? Yes. Would it have changed the outcome? I don’t know. Do I wish I had never heard of Trisomy? Yes in some ways. But in other ways it was suppose to be and something good will come out of it. Am I glad I was given the chance to be Noah’s grandmother? Without a doubt the answer is YES. Was there a purpose in having Noah be a part of our family? I have to believe there was. It is important for me to believe that Noah wants us to help other families and is instrumental in pushing the family to start “Noah’s Never Ending Rainbow”, a non-profit organization.
Precious Noah left an impact on everyone that was fortunate enough to get to meet him in his limited stay on this earth and he expects to continue leaving an impact on many more people in the years to come. Noah’s life continues through his family and the organization begun in his honor. I hope that you get a chance to know him also!