“I praise you for I am fearfully & wonderfully
made.” Psalm 139:14
When Josh and I got married almost 7 years ago, life was
simple and beautiful. I truly
married the man of my dreams and I don’t hesitate to say those words to this
day. Wow, did God bless me! We knew we wanted to have kids someday,
but we weren’t in any rush.
We wanted to build a solid marriage foundation so that our future kids
would have a healthy, happy home with parents that not only loved them, but
also were still crazy about each other!
Early in to our marriage, I found out that a genetic
condition called Fragile X ran on my Dad’s side of the family. I was saddened to hear that I could
possibly be a carrier of it. Fragile X is a genetic condition that causes
intellectual disability and behavioral and learning challenges. It’s linked to the X chromosome. Males that have the full mutation have
more severe disabilities because they only have one X (they are XY) and females
(XX) have a “good” x that can help compensate for the fragile x. There’s so much info I could give
about FXS, but if you’re interested to learn more, go here: http://www.fragilex.org/fragile-x-associated-disorders/
Well, about 4 years ago, I was tested and found out I was indeed a carrier
of Fragile X Syndrome. It’s hard
to describe the pain, anger, and sadness I felt when I realized that all of our
future children would have a 50% chance of inheriting it as well. Of the 50% chance they did
inherit it, they’d either be a carrier like myself or have the full mutation. Fragile X can only worsen with each
generation and at any point expand to the full mutation.
The hardest part when I first learned I carried the
premutation was feeling deep guilt for Josh. Thoughts that constantly ran through my head were
This is not fair for him.
If he knew I
had this issue, he never would have married me.
He deserves much
better than a broken wife.
Of course anyone that knows Josh understands what kind of
man he is. He was so comforting in
those hard times. He gave me the
reassurance that he’d marry me all over again and that whatever challenges life
threw at us, we were going to tackle them hand in hand. If having a special needs child
was what God wanted, we’d praise Him for it!
Both Silas and Ainsley have been tested. Silas does not have fragile X. But a week ago, we found out that
our sweet Ainsley has the full mutation. My heart literally hurt when the doctor
called with the genetic test results.
My heart still hurts. Whenever
I allow myself to think about it, I can’t stop the tears.
We won’t know what this means for our precious daughter
until she gets older. 65-70% of
females with the full mutation exhibit some difficulties with cognitive,
learning, behavioral, or social functioning. The remaining 30-35% are at risk to develop mental
health issues such as anxiety or depression, or they may have no observable
effects of the full mutation.
It’s not been an easy few weeks. I'm drained emotionally and physically. I’m 12 weeks pregnant with a 1.5
& 2.5 year old to keep fed & nurtured. I’m still working part time. I just had gall bladder surgery. We are moving in 10 days from family and friends
we love. I need to pack. Our condo is for sale so the house must
be kept clean and picked up at all times for showings. These showings are consistently being
requested right dab in the middle of my kids (and mine) naptime. My energy is low. I’m beyond tired.
Learning in the midst of all that, that my daughter has
Fragile X has been extra difficult.
But, I feel God’s presence close. I will cling to James 1:2-4. Consider it pure joy my brothers and sisters, whenever you
face trials of many kinds, because you know that the testing of your faith
produces perseverance. Let
perseverance finish its work so that you may be mature and complete, not
lacking anything.
You can’t watch Ainsley smile and not smile yourself. She has the sweetest personality with a
hint of ornery mixed in. Her
giggles are contagious. She is
beautiful. She adores her Daddy
and brother but has been a Mama’s girl from the day she arrived. I pray that her life will be full. Full of love. Full of friendship.
Full of Life. Full of
Jesus. I pray she learns
early on how much her Heavenly Father adores her.
Ainsley, you are a gift from above and your Daddy and I
treasure you.
