Moebius Awareness Day
I met this sweet family many many years ago. Honestly, I believe her second son was just a newborn and he just turned 18 years old. Seems unreal that time flies that fast. When I learned that Moebius Awareness Day was on January 24th (also my son-in-laws birthday), I reached out to see if she wanted to write about her experience as this was quite unexpected. She agreed.
Meeting This Family
What an honor to bring awareness to this syndrome and I am blessed to know this family. On a funny note, we met at a homeschooling field trip that I had arranged back in the day. It was the airport. I believe I only had five kids at the time and April had two. Her son was in a carrier and Kaitlyn was in her stroller.
My first reaction to seeing this precious little soul was the amount of hair this child has on her head. I mean…the girl has hair and it is dark, curly, and gorgeous! Her eyes were big and beautiful. Honestly, I didn’t realize anything else when we met. This girl child looks just like her mom! Carbon copy. We became friends that day and it has been a joy to watch her expand her family and to just love on them when I can!
Funny Story
We belonged to a homeschooling co-op. I worked with the little people, April worked with toddlers, I believe. Honestly my youngest child, at the time, was three. They went outside to swing on the swing set. When they came in, April found me and said that she thinks she scared my child and that I might need to talk to him. She tried to remedy the situation but felt like he needed more explanation. Once I realized what had happened, we laughed and laughed about it.
As she was swinging her daughter, Kaitlyn, she was in front of the swings. She was grabbing legs and pushing them back as she was helping the kids swing higher and higher. While she was swinging her daughter (with what I’m assuming is my son beside her in another swing), she grabbed Kaitlyn’s legs and her leg popped off into her hands. LOL.
Scared my son to death! I’m still cackling and that was probably 15 years ago! Crisis was averted. We explained that her leg wasn’t real and that it could come on and off…the look on his face was priceless. I could go on and on about her and her family. All stories have an element of love, faith, perseverance, friendship, and food.
Kaitlyn
She is gorgeous and hysterical! Kaitlyn is brilliant, capable, and she amazes me! I have loved hearing her play the violin and it terrifies me that she is driving. This isn’t because she isn’t capable it is because in my eyes, she is still 18 months old. Her love of Jesus is unmatched. She is an overcomer and the Lord has amazing plans for her and her future. Honestly, I could just squeeze her to pieces! She is willing, able, capable, and just a phenomenal human being.
April’s Story
This here is my beautiful daughter, our firstborn and the one who made me a mom. This is Kaitlyn.
Kaitlyn was born July 12th, 2003, five days past her due date. After a long labor, she entered the world weighing 6lbs, 13 oz. The first words I heard after she was born were serious but kind. “April, look at me. You have a beautiful baby girl, but she is missing her hand and foot.” And at that, the midwife placed this little baby on my chest. I was instantly in love as I looked at her tiny features and fresh, pink skin. She was here. She was mine, my baby girl.
As a side note, I had 4 ultrasounds during my pregnancy. Somehow her abnormalities were missed. And I never once had a concerning thought that our baby wasn’t healthy. Looking back, I am SO thankful that we didn’t know ahead of time. I enjoyed my pregnancy in perfect joy and peace. There was nothing that could’ve been done before she was born anyway.
Diagnosis
Several weeks after her birth we learned that Kaitlyn was born with
Moebius Syndrome (or sequence), a rare birth defect that only affects between 2 and 20 babies per million. Moebius Syndrome causes missing or underdeveloped 6th and 7th cranial nerves from lack of circulation early in pregnancy. Those nerves control all facial expressions, lateral eye movements and blinking. Being that it is a sequence (think of falling dominos), it can cause a myriad of other symptoms and syndromes, too. In our case, it also caused Kaitlyn’s left hand and foot not to develop at all, a clubbed right foot, both of her eyes were severely crossed, and she had a high palate and an asymmetrical tongue with limited movement.
Looking back, the grace of God helped us walk through the first several years of her life. We were in a complete whirlwind and I’m not sure we really knew it. We just did all the things. In the early weeks she would just scream and we didn’t know why. I was trying to breastfeed, but after she lost down to 5 lbs.13 oz, we started supplementing my milk with human milk fortifier to add calories to her diet.
Haberman Feeder
There was a special bottle called a
Haberman Feeder that saved her from having a feeding tube. It was a God send! We would also add formula to my milk when I couldn’t keep up. The nerve damage in her face had kept her from being able to suck at all. I spent countless hours pumping what milk I had left after not knowing that she wasn’t sucking for so long…a new mom problem! Her daddy would be up during the night for all of her feedings, taking care of her while I pumped every 2 hours. Very slowly, she started to gain weight and following her own growth curve! (But at a year old she was still only in 3 month clothes.) Looking back at those early pictures is very hard. The first six weeks I was starving my sweet baby and didn’t know it!
Speak Up!
Our days were filled with so many Dr. appointments and therapies! It was like a full time job! We had done our research and in turn had to educate every doctor, nurse, specialist and therapist that we saw. Most of them had never heard of Moebius Syndrome. One of the biggest things I learned really quickly is that YOU have to be your child’s advocate! We were told the wrong thing more than once. But after ignoring that little voice inside and things going really wrong (like having to pull her 8 front teeth at a year and a half old) you quickly learn to speak up! Even if you’re only a 20 year old, first time mom.
One of the best things anyone ever told us was the nurse at the genetic clinic. As she brought us the freshly printed information on Moebius syndrome the day Kaitlyn was diagnosed, she said something like, “Always remember, she is not her diagnosis. She is first your daughter.” It was so profound to me! I saw her as my daughter who had extra to overcome. I decided to see her as capable until proven otherwise. As she grew I would help her after she tried doing something herself…usually several times. Then we would try to figure it out together! Sometimes I had mom guilt for not making it easier on her. But she has definitely risen to the challenge and has amazed us all!
All About Kaitlyn
Today Kaitlyn is 19 years old. She is a joy to be around. Kaitlyn is fun and spunky…and maybe a little bit too stubborn. She is independent and has friends…and a car. Honestly, she has exceeded our expectations!
Just for fun, here are things that Kaitlyn can do:
Eat a normal diet
Ride a bike
Make new friends without help from her mom. Ha! (remember no facial expressions)
Swim
Play the violin and piano
Put her thick hair in a ponytail
Tie her shoes
Drive a car (or our big van!)
Work a job
Move out on her own
Live in a foreign country
God’s Comfort in Moebius Syndrome Journey
To date Kaitlyn has had close to 10 surgeries. I won’t pretend that her life has been easy, because it hasn’t. She is still in pain daily as she pushes through doing things that others don’t have to think about. In the beginning I remember staring at my tiny baby knowing that she would have to go through so much suffering. It didn’t feel fair. When I was searching for answers as to “why”, God led me to the story in the Bible about the man born blind.
In John 9:1-3 it says, 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.” That gave me so much peace! Her life was meant to display God’s works for others to see. God was in complete control and created her the way He did ON PURPOSE! And He has been with her every step of the way.
The first Bible verse we memorized together when she was a little girl is Psalm 139:14 “I will praise you for I am fearfully and wonderfully made. Marvelous are your works and this my soul knows right well.”
Moebius Syndrome has been such a big part of our lives, but not quite as big as we had expected. Kaitlyn is who she is today because of the struggles she has overcome . God knew what He was doing even when we didn’t. He has always had a plan and His grace is enough, this I know!
Related Posts
New Video from NORD
Like this:
Like Loading...
You must be logged in to post a comment.