When we found out we were pregnant with our 3rd child, we were so thrilled. And after having two boys, we were overjoyed and excited to learn we would be adding a little girl to our family. My pregnancy went by quickly without any indication of what was to come. The only concern at one time was that there was more fluid than normal in my uterus. But after a few ultrasounds, my doctor assured me that our daughter was healthy.

Hailey was born via a planned c-section early on a Tuesday morning. The delivery was uneventful but we were surprised when we finally saw our beautiful daughter. She had a deep red stain all over her body. Once back in my hospital room, we learned from the hospital pediatrician that Hailey had a Port Wine Stain. It covered over 70% of her body. As we were wrapping our minds around what a Port Wine Stain was and what that might mean for our daughter, a little over 24 hours after she was born our daughter started having issues with her breathing. While in the nursery, the nurses and pediatrician saw her having her first seizures. And just as quickly as we learned this, a transport was arranged. Our little baby girl had to be quickly moved to the children’s hospital where she could get immediate care. While I had to remain at the hospital where I delivered Hailey so I could continue to recover from the c-section.

The next few days were a blur. I was discharged quickly the next day so I could be with Hailey in the hospital. When I arrived, I was stunned to see our beautiful little girl hooked up to multiple monitors and wires were connected to her head so they could monitor her brain activity through an EEG. We weren't able to hold her for the first day or so until she was more stable. But our little girl was such a fighter. She was drinking donated breastmilk from the hospital while my supply came in. And she continued to gain strength. After many tests and a lengthy sedated MRI, we finally received the diagnosis of Sturge Weber Syndrome. We were stunned. I remember that evening so clearly. The neurologist and her team were all crowded in Hailey’s tiny NICU room showing us images of her MRI. Explaining that the right side of her brain was significantly smaller than it should be, and that was why Hailey was having seizures. They explained that because the blood vessels didn’t form properly, the blood wasn’t flowing as well as it should. Not only would we have to worry about seizures, but we also need to worry about the possibility of a stroke. All of this information was being shared with us all while my body felt heavy and empty all at the same time. I couldn’t see past tears as I tried to be brave. So many unknowns. So many questions. So many emotions.

Hailey spent a total of 13 days in the NICU. After getting her seizures under control with medicine and undergoing her first eye surgery to address the glaucoma in her right eye which, was also due to the vascular malformation (Port Wine Stain), we finally got to bring her home. She finally got to meet her big brothers.

We were finally a family of 5.

As we were learning the new routine of having three children to care for, we also were learning what it meant to have a child with special needs. The next few months were hard. Hailey had another cluster of seizures at a month old. Adjustments to medications were made. She had a second eye surgery to address her glaucoma. And then we transitioned off of her anti-seizure medication which she had a hard time adjusting to. It took a good 6 weeks for her to feel back to her normal self. Hailey spent many days and nights in the hospital over the last year due to seizures. She’s also gotten to take a few ambulance rides. Life as a special needs family meant juggling all the responsibilities of life while trying our best to learn about Hailey and her needs.

Our life was not what we thought it would be when we found out we were going to bring another child into our family. The first few months after Hailey was born I grieved for the loss of that life. A life not filled with medications and seizures and ambulance rides and endless doctors appointments. I questioned so many times what God was teaching me in this experience. And I questioned how God would use Hailey and I through this. How would God use our family? What I’ve come to truly understand is that God is in total control of all things. Having a child with special needs leaves you feeling very much not in control. There are so many unknowns and uncertainties. But I know that God has it all taken care of. His plan is so much bigger than what we can see. The worries of this world are not His own. While Hailey’s diagnosis is very scary, and sometimes overwhelming, I know that God is working through it. In just her short year of life, Hailey has more people talking to God than ever before. What a beautiful blessing. And it is one that brings me comfort.

So while the last year has not been easy, it has been so very good. I am beyond grateful that God chose me to be Hailey’s mom. She is the sweetest little girl, and I love watching her grow and develop. Being a mother has been the hardest and most rewarding role I’ve had in my life. I have learned to be grateful for each day and each moment as things can change so quickly.

I hope that our story helps another family. I’m not sure if I’ve even shared enough or used the right words to convey how significant this last year has been for me and my family. It has been tough and rewarding. I can’t imagine our life without Hailey, so I am grateful for her.

To learn more about Hailey, you can follow along @mrs.alissawalsh!

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