Genetic Testing Results

Today was the day we’ve been waiting for. Time has flown, and yet at the same time I can feel each second ticking by, so slow, one after the other. It has been emotional day…

We finally heard from Riley this afternoon about our genetic testing results. Jeremy and myself are both carriers of a recessive mutated EARS 2 gene which when put together, presents as Leigh’s Disease. Every child we would possibly conceive in the future would have a 1 in 4 chance of being born with Leigh’s Disease. Because of this fact, it is the recommendation of the doctors that we should not try to have any more children naturally, since Leigh’s Disease is a death sentence. If we still want to try to have our own children we will need to have IVF if we want a guarantee they will be disease free.

This has been a pretty devastating blow to say the least. We knew that it was a 99% chance that this would be the results, but to know for sure that we can never try to have any more children on our own is just crushing. I couldn’t stop crying at work today, so I went home early. I appreciate my coworkers so much as they have been so supportive. Sometimes you just need people to hug you and cry with you, and they did just that for me today.

There are just so many different emotions we are experiencing right now… sadness, guilt, fear, uncertainty… when will we ever get to be parents again? What if I accidentally get pregnant and have to bury another child? Why do we keep receiving knockdown, after knockdown?

While we may not have any answers, and may never have some of them, we are trying to face our new knowledge with courage. Whenever I feel like giving up I look at my Lincoln bracelet. That little boy showed this momma what it truly means to be strong and courageous. If my 5 month old son can fight with all his strength until his final breath, than so can I. We are going to make him one proud baby!

Please continue to pray for us and our families as we process this news and what it means for our family. We appreciate all the love and support more than we could ever let you know. I ask also that you will consider donating to Lincoln’s Research fund. You can do so by clicking the link above on the menu bar. The money goes to developing life prolonging treatments and hopefully someday a cure. Our son will help future little ones and maybe keep other mommies and daddies from saying goodbye so soon. Love to you all.

My Lincoln bracelets

My Lincoln bracelets

Safe in My Arms

Well, it’s official. Lincoln has been in heaven longer than he was here with us, sans belly time. It is so unbelievable. Time has pretty much stood still for us, and yet moves at lightening speed all at the same time.

It’s absolutely exhausting missing my son. I was on my way to work today when In My Arms by Plumb came on the radio. The song talks about holding your baby safe in your arms through the storms of life. I couldn’t help for feel the intense pain from my own empty arms that ache for my son. I know that he is safe in the arms of the Father until we can be reunited. That knowledge brings comfort, but it doesn’t stop the tears from flowing. I’ve copied a link below so everyone can listen, and if you’ve never heard it, you will soon know why I was a hot mess by the time I got there. I always wear waterproof eye makeup now because I never know when a cry fest might arise, so of course on the day I ran out, I have a mini meltdown. I walked into work with two black stripes running down my face.

I wanted to give an update as far as Jeremy and mine’s genetic testing. We found out 3 months ago exactly what type of Leigh’s Disease that Lincoln had, and we have been waiting to hear back from our contact at Riley Children’s Hospital about if our insurance will pre approve our testing. We finally heard back last week but it was not the news we were expecting. The doctor we’ve been working with lost our info and never submitted our application for pre approval. So we’ve basically been waiting these last 3 months for nothing. Very frustrating. Please be praying for quick responses from doctors and our insurance companies.

I submitted Lincoln’s name to be worn by a volunteer at the annual Walk to Remember in Chicago that is hosted by the Compassionate Friends. It was very moving to see the picture with his name listed

Walk to Remember 2014

Walk to Remember 2014

I’ve learned already what deep sorrow I will forever carry on this journey as a child loss mommy. I have a Lincoln sized hole in my heart and I know that it will be there until we are together again one day.