Written by Tiffany J., Atlee’s Mom
Atlee Sue can light up anyone’s day that she meets. She is so full of Jesus and life that you can’t help but smile around her. Atlee is very sassy and loves to laugh, dance, and be outside with her brother. She also loves bath time and a good massage. She is always happy and sensory-loving, loves her curly hair, loves to sit at the altar every Sunday during church service, and loves her family, especially her big brother!
At my 20-week anatomy scan, we learned something was wrong with Atlee. She was missing two chambers of her heart, was measuring small, missing her ulna, and missing fingers on one hand, and we couldn’t see fingers on the other hand because it was tucked beside her since her arm was webbed together. We then got transferred to a high-risk doctor, and at that time, we were told Atlee Sue would not be viable. At 34 weeks pregnant, due to testing Atlee’s genetic mapping, we received a call from the genetics doctor while I was at work, and we found out Atlee had CdLS, the NIPBL gene mutation.
My whole pregnancy was very dark and had lots of unknowns, as the doctors don’t give you any hope. I was an emotional mess when I received the phone call. I remember just crying and crying and crying, and my co-worker had gone and got my mother. I thought life was over; I thought, “Why me? Why would God do this to me and my family?” When all you pray for during pregnancy is to have a healthy baby. Then to be told your baby might not make it, you might not ever get to experience life with your baby. I grieved having a healthy “typical” baby for a while.
The first year for all of us was very stressful because we were told we only had a year with Atlee if she lived past birth, so that year, I was numb. We were all enjoying every day as much as possible while attending doctor appointments every month, trying to get everything lined up, and just going through the motions.
After we made it through the first year, life truly got better! Atlee got released from some of her doctors and we had many things figured out by then. Our family is so blessed to be a part of the CdLS community, everything it has taught us, and how welcoming and loving everyone is.
A typical day with our favorite girl now is full of laughing, playing with her toys, and running around in her new shoes and her gait trainer walker. She spends many hours of therapy each week, including PT, OT, and Speech, eating by mouth in addition to her tube feedings, and learning to use her assistive device for communication. Atlee spends many hours with her home health nurse, whom we are very thankful for while I attend nursing school and work. Every day, we dress Atlee girl to the best, and she wears the best bows in her curly dark hair. Lots of snuggles, hugs, and kisses. We have so much fun every day.
Every day is such a reward just to watch Atlee grow and learn new things on her own time schedule. She brings my family and me so much joy in everything she does.
Atlee Sue is almost 3 years old, and I am just now taking time to get my hair done, have dinner with a friend, and get a pedicure. Being a single mom, you don’t have extra time as it is, and I truly love to be with my kids and spoil them when I can. Their needs always come first, and I’m okay with that. They are only young children once.
The biggest challenge as a parent is having enough time in the day to get everything done and not feel guilty about what doesn’t get done. However, I have some of the best support, such as my parents, who live next door to us, a few very close friends, Atlee’s home health nurse, Tasha, Atlee’s therapist, who are very close to us and supportive, and my family. Also, Abel, Atlee’s big brother, who is 12, is the best support. The love they have for each other is truly amazing. He knows how to take care of her and can do her feeds. He just won’t change diapers.
Having a medically complex child automatically makes you an advocate, especially when they have a rare syndrome that nobody knows anything about. There have been several times I’ve had to speak up and fight for what my daughter needs. The sad thing about the system is they don’t willingly tell you all the things your child can actually receive due to their syndrome unless you ask, but how on earth do you know what to ask when this is your first time in this situation? I’m so thankful for other experienced parents, therapists, and parents of special needs conventions to help educate us on what we are missing out on.
My proudest moments with Atlee are the love she has for Jesus. She scoots up to the altar every Sunday and sits there the whole time. I’m so proud of Atlee for her hard work in therapy; she never gives up. She might give you some sass, but she is so strong and finds ways to make a toy work or get where she wants to go, even with her limb differences and developmental delays. She uses her feet, mouth, and hand to get what she wants. She has had her hearing aids since she was 3 months old and has adapted so well to them. She communicates in her own way, and we just continue to let her lead, and we follow! Nana, mom, and “a a” (the A sound for her brother Abel) are her favorite words and blowing kissys. She gives the best little hugs and the biggest smile you’ve ever seen. There’s no way I can list everything I’m proud of because I am proud of everything she accomplishes! This is exactly where we are supposed to be in life.
The advice I wish I had received is the doctors aren’t always right, each baby is not the same, every case is different, and the doctors must tell you the worst possible outcomes to prepare you, but that doesn’t mean that will be your situation and pray because God will always show up for you! This is truly an amazing journey to be on. Is it hard … yes but parenting is always hard, no matter your child’s situation. This journey is so rewarding at the same time. You learn to be so grateful for every single little thing your child does when there is a possibility your child may not ever do it. I would redo this journey a million times the same exact way!
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