For as long as I can recall, in the almost 10 years of being together, people have always thought Jason and I were very opposite. That is most certainly true to some extent, but it was highlighted even more this week.
As most of you are aware, Beckett went through some genetic testing earlier this month to determine if his deafness was caused by something related to genetics. Our doctors advised us that his deafness was either caused by genetics or the gentamicin he was on during his stay in NICU shortly after birth. We wanted to know either way as we have been yearning for closure on the “how” aspect of this journey.
The results of the gene sequencing showed that Beckett had two compound heteozygous pathogenic variants, c. 35delG (p.Gly12Valfs*2) and c.229T>C (p.Trp77Arg) detected in GJB2 in his DNA. That means that Jason has one of these genes and I have the other. Imagine hearing that news. The only reason our son is deaf is because Jason had one of these genes and I have the other and once they’re combined they caused deafness for children at or shortly following birth. Truly opposite genes attracted in our case. This also means that 25% of the children Jason and I have together will be deaf.
Because of this staggering statistic, Jason and I have closed the curtain on the possibility of having more children. We’re still trying to figure out how we will provide, to the best of our capabilities, for Beckett. I’ve been mourning the fact that we will not be having more children. Mourning the fact that we still have four embryos frozen and understanding that one of them will be deaf. My heart hurts just thinking that there is a possibility that our fertility center would destroy them instead of allowing us to donate which was the original plan. (Disclaimer: We have not discussed this news with the fertility center yet, so we’re not sure what will actually occur. These are only our fears.)
We spent most of the morning and early afternoon at Mott’s Children’s Hospital in Ann Arbor yesterday receiving these results and truly diving in the genetic backgrounds of each of us even undergoing blood work to determine which of those two genes I carry and which one Jason carries. Braxton even did blood work so we could determine if he also carries a recessive gene. Our doctors told us that they are pretty confident that Braxton is in the clear especially because he hasn’t shown any signs of hearing loss. That kid can hear me tip toeing up the stairs. 🙂 We should receive the results of that test in a month or so.
So there’s that. There is the latest twist in this crazy life Jason and I share. We truly exemplify the saying “opposites attract” and unfortunately not in a fun way in some cases. We have received some closure, at this point, and for me that was truly important. I’ve been harboring such guilt. I had myself convinced that part of the reason he had hearing loss was because of me falling at 37 weeks. I thought for sure it had something to do with it, but now I can let that go. And what a huge relief.
We are moving forward with hearing aids which Beckett will receive on the 26th of January. The sounds he picks up, if he picks up anything, might not be audible, but he will know he isn’t living in a silent world. From there, we will be having speech pathologists come out to our home starting at 6 months to help us with language. If we decide to move forward with an implant, that won’t be until he is one in August of 2018.
Until then, we are doing everything in our power to help Beckett and we are confidant that with the great doctors we are working with, the resources available to us, our perseverance and strength, our Faith, along with our family and friends, that this season will be just that, a season. A season of growth, a season of learning, a season of drawbacks and triumphs and a season of tremendous change.
We have welcomed this journey with open arms, and though it might be challenging at times, we will tackle this journey with faith, hope and love.