By Carrie Dyal
Mommy to Izadora “Izzy”
Born August 2019
Intractable epilepsy without status epilepticus and global delays
My husband and I had had two miscarriages before Izzy was born; a twin pregnancy lost at 8.5 weeks, and a blighted ovum lost at 9 weeks. We were devastated. Met with Dr Poppy an infertility specialist and at that time I found out I was pregnant with our rainbow baby. Lots of weekly labs and weekly progesterone the next 36 weeks. Oral pills, suppositories and injections. High risk doctors and gestational diabetes. My main goal was to keep her in with no regard to something being wrong after she was delivered.
I wanted a little girl we could dress up, do hair, paint nails. A little mini me. I wanted a sweet little family of 4 and I wanted to watch Tyler be the best big brother.
Izzy was born in August of 2019 with no issues – it was the easiest delivery ever! When Izzy was 3 months old, she got sick and was hospitalized. As far as we know she had a GI bug but was never the same after. I had reached out to get first steps going, but milestones were not being met. I started to wonder if something had always been wrong, but we thought it was reflux until she got sick. Concerns were growing. Doctors weren’t listening.
In 2021, we went to St. Louis to see specialists and got a preliminary diagnosis of “epileptic encephalopathy with multi focal seizures.” Within a year, that diagnosis changed to “intractable epilepsy with multi focal seizures without status epilepticus,” but we still don’t know anything definitive. Genetics are normal. We’re currently just trying to get her seizures under control. Several seizure meds have failed to help. She typically has 3 to 4 one-second seizure a day, at least that we can see. Sometimes she has really nasty ones. It breaks my heart to watch.
We struggled with a lot of why’s. I battled depression. I grieved the lose of a normal child and our normal world had crumbled, did not help Covid had started right after she was born, so we were scared to death. I struggled with Tyler not being able to be a normal brother. I blamed myself.
But despite all the hard emotions, I know Izzy is a pure gift from God. She is so strong, always happy. She is a true vision of a warrior. She has taught me how to be strong, a fighter and an advocate.
During Covid we grew stronger as a family. Tyler became the brother God placed him on this earth to be. He would go to the ends of the earth for his sister. My husband was placed on this earth to be a special needs daddy, her 24/7 caregiver. My mom before she passed was a special needs speech pathologist and I know her hands are all over Izzy and she is watching us, keeping us safe. We still don’t have all of the answers and the past year has been rough, but she has progressed in so many ways. God gave us a miracle we get to watch grow every day and I’m so thankful.
And we’re advocating and fighting for what she deserves. Fighting to get her SSI disability status. Fighting to change things in Missouri so that a parent can get paid as a caregiver for a special needs child, so I no longer have to work 60-70 hours a week just to keep the bills paid. It’s been really tough, but we push through.
On Angels’ Wings has helped us have beautiful pictures to commemorate each year of our journey, the good the bad and the ugly. Such a great support and memories in picture for years to come.
I pray we get a definitive diagnosis, and she can flourish to her full potential. I pray for positive communication with possible words some day. I long to hear “I love you, Mommy.”
