Genetic Testing and More…

It’s finally happening. After months of waiting to hear back from doctors, and battling with insurance, Jeremy and I are going to have our genetic testing done this Thursday. We were denied insurance coverage for our testing and have decided to pay cash as we cannot stand the thought of going any longer wandering about in the unknown. We will be tested at the Department of Medical and Molecular Genetics in the Medical Research and Library Building at Indiana University Health, just down the street from Riley Children’s Hospital. It will be awhile before we receive any of the results. The goal is to find out if we passed down the Leigh’s Disease to Lincoln through a recessive gene, or if he spontaneously had a mutated gene. If we passed it down to him, that will directly impact our future family planning.

We are also going to be receiving genetic counseling that same day where they will go into great detail about what exactly Lincoln had and how it effected his body. There are supposed to be slides and everything. I can honestly say that I’m excited and scared at the same time. I hated not knowing what was happening to my little boy, but I feel it will also break my heart even more (if that’s possible) to know what he truly was going through. I can only remind myself over and over of God’s promise that my baby is pain-free and waiting for me in heaven with our Savior. It is so mind-boggling to think about my dear little son experiencing so many things that I can only dream and hope for as I wait to be reunited with him. I can’t wait.

The other day I got the mail when I arrived home from work and immediately began sobbing as I had received a catalog called Throwing your Baby’s 1st Birthday… just another reminder that next month on September 16th, I will not be having a party. No cake, or candles, or presents, but in its stead, a trip to the cemetery where his little Lincoln’s body was laid to rest. I didn’t want to celebrate my own birthday last month, trying so hard not to cry when I was sung happy birthday by my family because it was a reminder that I would never be singing that song to my son. There are so many unexpected things that come out of nowhere and knock for feet out from under you, when you are so deep in grief. You think you are having an at least “ok” day and BOOM you hit the ground with a huge thud.

Tomorrow, on Sunday, we are driving to Indy with my family for a memorial service for all the recent children who have passed away at Riley. A part of me doesn’t want to go back there, but I don’t want to look back and have any regrets. I’m not sure what to expect, but we were told to bring a framed picture of Lincoln to share with the other parents. I think we should also each have our own box of tissues as well.

I do want to share some wonderful mail that we received today. I contacted the photographer who took Lincoln’s newborn pictures at Marion General Hospital, hoping that they would still have the pictures so we could buy more. I was blown away when not only did they have the pictures we had purchased, but they still had 5 other poses as well. They sent them all to me for free on a CD and a letter giving us all the copy rights to the pictures!!! THAT MADE MY DAY. What a wonderful act of love that we have received from Carl at Portrayal Studios. I am so thankful for their generosity. I want to share some of these beautiful pictures of my son…

What a sweet boy!

What a sweet boy!

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Mommy and Daddy love you Lincoln

Mommy and Daddy love you Lincoln! So much!!

 

One thought on “Genetic Testing and More…

  1. Wow! Just read this Stephanie and my heart breaks for you and Jeremy! I love you and pray for you and your healing…love you!

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