Yesterday (September 24) was a very special day! Ryleigh’s 14th birthday! While that may not sound like anything extraordinary, wait til you hear this gal’s remarkable journey. She is one tough little cookie! For Ryleigh’s birthday, her parents wanted to commission a custom piece of her as a mermaid surrounded by her fave things—her service dog (and bff) Addy & sea turtles! This was such a fun piece for me 😍 Happiest of birthdays to you Ryleigh!!!! Your story & bright smile are incredibly inspiring!
I asked Ryleigh’s mom to share her entire story with us below:
“I spent 10 weeks in the hospital trying not to give birth to Ry. I had almost no amniotic fluid and they said I would deliver her within 24 hours. They also found her severe heart defect that day and said she could possibly be born with Down syndrome. None of this mattered to me except she weigh 10 ounces and there was no way I was going to have her be born so early she wouldn’t survive.
I spent 10 weeks in a hospital bed only allowed to get up every other day for 15 minutes minus going potty. I told God I would never take her for granted and would fight for life for her if He would just keep her inside me until she was bigger and at least 30 weeks! A nurse brought me a journal during my hospital stay and told me to write a journal to Ryleigh for therapeutic relief. 14 years later I still have the journal with every single page filled with notes to Ryleigh.
She was born nine weeks premature weighing 3lbs 10ounces and 15 inches long. She had a full head of hair with blonde tips!
Everyone laughed because I used to do hair before I got put in the hospital and she was born with highlights! Doctors told me she wouldn’t survive 24 hours after birth then I was told it was okay to mourn because she probably wouldn’t survive a week. She had her first life saving emergency surgery at 10 days old. Then doctors told me if she survived that she wouldn’t like to be a month.
She wasn’t born with Down syndrome and has no genetically reasons for being born special other than God felt us special enough to give us a daughter that would show us His miracles daily! She had her first open heart surgery when she was six weeks old and her heart was the size of a strawberry! I told her doctors they weren’t God and would never decide if she lives or dies and that I would be sending them pictures of her first birthday!
She spent her first three months of life in the hospital with me by her side. I never left her. They thought I was crazy but it was important she knew I would always be by her side! I would read her the Harry Potter series in the icu because I told the nurses she was too good for baby board books lol on her first birthday I sent a picture to the hospitals icu with her in a shirt that I made that said “my mommy told you so”
At 13 months she had her second major open heart surgery and had an allergic reaction to a blood clotting medication coming off bypass. I was pacing the halls and the nurse came out of the or and asked what was wrong and I told her something was wrong with Ryleigh. I told her I could feel her and feel something major was wrong, I had never been away from her, I had pumped her whole life bc she needed extra calories added to her breastmilk, I was never away from her, I knew! The nurse told me I was crazy and to go calm down because they were taking her off bypass and she would be done within 30 minutes.
THREE HOURS later her heart surgeon came out white as a ghost and said I was right something had happened. Ryleigh was given the medicine and immediately coded. She was dead for 13 minutes while he manually squeezed her heart with his hands and they got her back on bypass to stabilize but that she was alive now and in recovery. The next 48 hours would be vital on whether she survived.
She woke up 30 minutes later and nothing they did to sedate her would knock her out. Nothing like having your baby look at you silently crying on a ventilator with eyes asking why you couldn’t save her and take away her pain. They thought she would be brain dead and in the hospital for a long time. Boy were they wrong. She was back to her normal self for that time and came home five days later.
I noticed she never regressed but stopped progressing in her growing and development like she had been. Five months later she started having uncontrollable seizures. Some days up to 100 seizures she wasn’t even having symptoms to. Other days seizures that made her stop breathing. We learned then she had suffered brain damage when she died for 12 minutes. We spent 6 weeks in the hospital and all the strides we had made were gone. Her brain was electrically going crazy because it didn’t know how to function with the loss of tissue and she hated her seizure medicine so much she completely stopped eating. At age two she had her next surgery to have a feeding tube placed in her stomach. That ended up making her vomit everything she ate for 3 years instead of helping her gain weight. Through all this she always smiled and has always been our sunshine! By age five her daddy finally got her to start eating again and they removed her feeding tube. She started special olympics at age 8!
Even though she cannot walk or talk other than a few words she is always so happy! I’ve learned so much from her! I’ve experienced things I wouldn’t wish on my worst enemy, like having her die in her dads arms a week after giving birth to her baby brother and having to give life saving cpr until the Ambulance could get to our house. I have times where I live in fear, times where I wouldn’t change a thing and times where I sit in a room alone and cry. One thing is though, she brought me closer to God. She showed me true love, she shows us a smile of someone who doesn’t see the evil in this world. She loves with the purest of loves and I would never ever change a thing about being her mom or want it any other way. The only thing I wish I could change is the fear of a day when I don’t have her. I wish I didn’t have to worry that this birthday could be the last. But I always remind myself God felt that I was good enough to be given one of His biggest blessings And that I was good enough to be her mom and fight for her and never ever take a day He gives us with her for granted!! On the 24 she will be 14 years old!!!! Being her mommy for 14 years has been such an amazing rollercoaster and we are so blessed that God chose us for this ride!! Our baby that wouldn’t survive 24 hours has survived 14 years!!!”