By Mom, Karmen Haley
My name is Karmen Haley, and I am so honored to get to share with you our journey with my handsome little man, Layton Oaks. He is five years old, and he is in his 4th year at LLH.
Leading up to our pregnancy with Layton, we had had three miscarriages. So when we had made it to 18 weeks with Layton, we were so excited to go to our Big ultrasound to find out the Gender of the baby. We even took our daughter Lillian who was three, so she could find out if she would have a brother or sister.
During the anatomy scan, the ultrasound tech spent a lot of time looking at Layton’s brain. She finally told us that we would have a baby boy, but it felt so anti-climactic because she was very serious and then said she would be right back. She walked out of the room and didn’t come back. Luke and I tried to put on a happy face for Lillian, this was the baby boy Luke, and I had dreamed of, but we both knew right then that something was very different.
The doctor came in and told us that the baby had excessive fluid on his brain and sent us to a perinatal specialist the next day for a more thorough ultrasound. That ultrasound showed Fluid on Layton’s brain, shorter limbs, and a small nasal bridge, all soft markers for Down syndrome. The doctor had me do a blood test that day to rule out or confirm a diagnosis but told us to prepare ourselves for anything from a mild developmental delay to something much more severe. Two weeks later, I got a phone call from the geneticist. She told me that they were 98.9 % sure that our baby would have Down syndrome.
The unknown can feel scary, and we were grieving the loss of this ideal baby boy that we had in our minds; the picture of what we thought he would look like and what his future would hold. We had all these dreams for him and hopes for his future. It seemed like that had all changed.
Layton was born just a few months after our family moved to Tulsa. He was born five weeks premature. He had extra fluid on his brain, an ASD heart defect, and feeding issues. It was a lonely and challenging season as we were still getting settled into a new house, city, and job. While trying to make new friends, find a church family, and processing the fact that our new baby had Down syndrome.
Before Layton was born, three different people encouraged us to get Layton on the waitlist at LLH. I had tried to make the call to get him on the waitlist before he was born.
Making that call was the first thing that I had to do for Layton that felt so different, and honestly, it made me sad. Signing my daughter up for preschool was so easy. I just found a school close to our house where she could be with her friends. It was easy. This felt hard.
I got so emotional while the phone was ringing that when Sharron answered at the front desk, I just hung and asked Luke to make the call later. At the time, we just wanted to get him on the waitlist first, and we would decide later if the LLH was the right place for him.
Layton was on the waitlist for 2 ½ years when we finally got the call from the LLH that his number had finally come up, and we were so excited for him to get the opportunity to go to LLH. At this point in our journey, we knew how crucial early intervention was for Layton’s development. We always want to give him all the opportunities and resources we can to help him reach his greatest potential. We knew that Layton could benefit significantly from getting the daily therapies that he needed to grow and learn.
We have big dreams for Layton, and we don’t ever want to assume he can’t do things. It’s refreshing to be part of a school where the teachers see Layton for his abilities, not his disability. They challenge him because they know he is capable.
When you have a child with special needs, it can sometimes feel overwhelming when you think of all the things you should be doing daily with your child. There is always a homework assignment when you leave therapy. When you also have other children at home and need their cups filled, it can be hard to balance everyone at times.
Layton loves coming to school, and when he is at school, I can breathe a little easier knowing that Layton is challenged and learning and playing with friends. He has grown so much since he has been here.
Thanks to incredibly generous donors like yourselves Layton and all his friends at LLH GET TO ATTEND school tuition-free. This is a huge blessing. It cost over $25,000 per year for each student to attend LLH. Most of these families already have a lot of extra medical expenses. So paying $25,000 per year would not be possible. The LLH to providing a tuition free education is an incredible blessing, and we are so thankful.
We have grown a lot as a family since Layton has come into our lives. Layton has taught us how to slow down and appreciate the smallest things in life; he has shown us the grace, patience, and love of God. He has taught us to see the beauty in differences. He is smart and kind and so capable. He is a bright light in this world, and I am lucky enough to get to witness it daily.
If I could go back and talk to my pregnant self, who was so sad and scared of the unknown of having a child with down syndrome, I would tell her how much Layton would change us in such beautiful ways, how our eyes would see differently, how his sisters would have this deep love not only for him but for other people who have different abilities, how we would meet so many incredible people on this journey. That he would help deepen and grow our faith and trust in God. Yes, our life certainly would look different than we had imagined, but different is not bad. Our life would be so much more beautiful because of Layton.
Layton is so strong and brave. He has shown me a strength that I never knew I had. I am so proud to be Layton’s mom. He has forever changed me, and I am so thankful. I will leave you with this Bible vs. that inspired Layton’s middle name. Oaks. It’s from Isaiah 61:3. “They will be called oaks of righteousness, trees planted by the Lord to reveal his splendor.”