July is Fragile X Awareness Month. Luke 14 Exchange is grateful to Jessie Olivio Dougherty for writing and sharing this part of her family’s story with us.
When we first began our family almost 17 years ago, we had never heard of Fragile X Syndrome.* It wasn’t until our third son was born that we’d learn the name of the journey we were walking.
April 18, 2012, we anxiously sat in the geneticist office with our sweet Levi. There, we learned about Fragile X Syndrome and how our lives would forever be different.
Our oldest two boys had been struggling with speech and motor skills. Because the nature of Fragile X Syndrome is to pass from mother to son, we determined it would be best to have them tested. June 2012, we received each of their Fragile X diagnoses as well.
A few years later, we unexpectedly found ourselves pregnant again. Not with just one sweet baby, but we were being blessed with twins! Another little boy, and a sweet little girl to complete our family. My anxious heart could not fully enjoy my pregnancy not knowing if they too carried the Fragile X gene. We opted to test them in utero, via amniocentesis. October 2014, we were told that both of our blessings were also full mutation, Fragile X Syndrome.
There were now five precious children that God trusted me with to love, guide and fight for through life.
One doctor after another told us of the struggles we would face, raising four boys and a girl with Fragile X Syndrome. The obstacles and hurdles they’d have to jump over. The challenges we’d face as parents.
But nothing the doctors told us or prepared me for my every day with our five special children.
What they didn’t tell me was how much love my child would have for me, and the sweet ways they would show me.
They didn’t prepare me for how proud we would be for every inch-stone, not milestone, they reached.
They didn’t explain that we would celebrate things other parents take for granted, like learning to walk at two-and-a-half or using a four-word phrase spontaneously at five.
They didn’t prepare my heart for the overwhelming joy I would get when I see my thirteen- and fourteen-year-old gaining independence and making strides in their personal and educational growth!
They didn’t prepare me for the pride I’d feel sitting next to my fourteen-year-old who has finally read a “Biscuit” book to me ON HIS OWN. ON HIS OWN!
They didn’t prepare us for all the smiles and laughs we receive daily.
They didn’t tell me I’d have it in me to fight for them, every day, to make sure they receive the services they need.
Our prayer is that everyone involved in our lives and our children’s lives has a better understanding of this syndrome and its effect on us daily.
One thing that I haven’t shared much about over the last 10 years is the overwhelming level of guilt I have to work through knowing I passed on the Fragile X mutation to my children. Some days I feel like I have worked past that stage and then other days I feel like we just found out about Fragile X Syndrome, and it reopens my wounds of guilt.
I am comforted by the words of Jesus in John 9:1-3. “As He passed by, He saw a man blind from birth. And his disciples asked Him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.”
I know God has great big plans for my children! I cannot wait to see God use them for His glory and do mighty things through them.
While many days I am an exhausted mess, I’ve found the good, the great and the exceptional amongst the tears, the struggles and the heartache. We remind ourselves that while our babies may be fragile, they certainly are not broken!
We have been so richly blessed with Logan, Zack, Levi, Parker and Chloe. God knew we needed them in our lives, and that they needed us. Surely a match made in heaven.
*Fragile X Syndrome is a genetic syndrome caused when the FMRP protein is not made in the body. Without this protein, intellectual and cognitive delays are present. With this, the FMR1 protein in the brain is turned off. Between 1 in 148 to 291 females and 1 in 290 to 855 males are affected by Fragile X Syndrome. While full mutation Fragile X is most prominent, carriers for the syndrome can experience a host of symptoms directly correlated to being a carrier. For more information, visit www.fragilex.org