March is national Trisomy awareness month, with the 13th specifically set aside for Trisomy 13 awareness day. Perfectly fitting since this is the 3rd month, and Trisomy 13 consists of 3 of the 13th chromosome, aka 3-13.
For those not familiar with any of the Trisomy diagnosis', there is Patau's Syndrome which is Trisomy 13, Edwards Syndrome which is Trisomy 18 and Downs Syndrome which is Trisomy 21.
My sweet Noah had Trisomy 13 which is the rarest of the Trisomies & always fatal. This occurs in approximately every 1 in 10,000 live births. Statics are hard to gather on the actual rate of occurrence of Trisomy 13 as 95% of these babies are miscarried early on or stillborn (which makes Noah's Story even more amazing at how he defeated the odds!).
The 13th chromosome is responsible for the development of the body's major organs. Since we are only to have 2 of each chromosomes, this obviously has major impact on a Trisomy baby, mainly affecting brain and heart development, though there is often many other abnormalities as well (this can vary with each trisomy baby). This condition is not hereditary nor caused by genetics or anything we did and there is nothing anyone can do to prevent this from happening as it takes place upon conception. In the words of science, it's a "fluke". Of course as a Christian, I know it wasn't a fluke as God doesn't make mistakes. I don't know why Noah was chosen to have this condition but he was and I look forward to the day I reach Heaven to finally see the big picture.
Though I wouldn't have chosen this path for my son, I am thankful for all I have learned, and continue to learn, from Noah's brief life here on earth (after all, he is still living, just at a different address than mine!) I am thankful for the friendships I've made from walking this road that I wouldn't have had the chance to form otherwise. This journey has been hard, I miss Noah fiercely every.single.day and I wouldn't be where I am today if it wasn't for the grace of God.
If you have a minute today or anytime during Trisomy awareness month, think of and/or pray for the many families & their precious children who have walked the path of living with Trisomy 13. I say living because even though our children are healed & perfect in Heaven, those of us left behind are forever changed & will always have a piece of our heart missing until the day our children coming running into our arms when we reach Heaven.
I Love you Noah!!!
Jenn....thinking of you and your family today. I commit to praying for you. For you to have your strength renewed and your faith strengthened. He does have a plan! Even when it is hard to walk out. What a glorious day that will be to be reunited again. Much love to you! Hugs! Lynnea
ReplyDeleteI never heard of March 13th..It really surprised me, in a good way! I had a beautiful baby girl, Maureen, born with trisomy 13-15, 48 yrs ago. She filled my arms and heart for 4 mos. While being at the hospital everyday, I became so angry and bitter, not about my baby, but for all the other sick babies whose parents left them there, never to return. After about 6 mos of depression and anger at God, questioning "Why the innocent", I woke up one morning and realized she was with God, and He said " Trust in Me, I know what's best"
ReplyDeleteWe may not know all the answers now, but we must not ever doubt His love, and believe He knows best!! There is still a void, an emptiness and wondering what if.. it'll
always be there. I am blessed with three children and six grandkids, my only granddaughter's name is Maureen :)
Jenn, you wrote a beautiful story. Maureen and Noah are in a good place together. God Bless You.
Peggy Hughes
Thank you Peggy! So sorry to read about your sweet Maureen.
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