Addison is our second child, we have 4 girls. Addy was born 9 weeks early, she was so eager to get here. She had to stay in our local NICU for 3 weeks. Addy was a fighter from the day she was born, she let nothing hold her back. After being home for a few days we had to take her back to the hospital due to some apnea episodes and not being able to keep her body temp up.
During the next few months Addy was treated several times due to Apnea episodes. On one of her visits to the hospital she caught viral meningitis. She was then transferred to the closest children’s hospital. Addy became very sick very fast spending her first Christmas in the PICU due to a severe lung infection. Addy was at children’s hospital for 3 months. During that time she had several lung infections and due to a tiny whole in her heart from being preemie, a blood clot was able to pass through and she suffered a stroke.
Addy even as a baby she always had a smile even when she could not lift her little head she wore a smile on her face. We were told by the doctors that they did not know what the long-term effects of the stroke would be. They told us that there was a chance of developmental delays and seizures. Addy did have some developmental delays but she got OT, PT and speech and began to blossom.
She was so proud of herself when she finally walked at 22 months. Addy was a tiptoe walker from the start, and she never just walked. She danced everywhere instead of walking,. Addy went to preschool for special needs kids due to some of her developmental delays, she loved school. Addy completed two years of kindergarten during this time we started to notice some things.
She started to stare off into the distance and having severe, not-your-normal meltdowns.
In 2009 Addy was seen by a Pediatric neurologist and it was confirmed that she was having small seizures, she was placed on an anti-seizure medication. Addy still had that smile on her face, she did not like taking the medicine but knew she had to. We took a family beach trip the summer of 2010. Addy loved the beach her and her sisters were up every morning before the sun. After a week at the beach we made the 6 hour drive home, we had to stop at BestBuy when we reached our hometown for my husband to grab something.
The big seizures
I sat in the car with the 4 sleeping children, my then 7 year old said mommy, Addy is shaking and drooling. I jumped out of the car and opened the side door to get to her. This was Addy’s first Tonic Colonic Seizure. Her Dr. had given us emergency meds to have on hand if this ever happened, we never though it would. We gave Addy the emergency meds in the parking lot of BestBuy while the ambulance was on its way.
Addy’s first big seizure lasted 15 minutes at that time that was the most scared we as parents had ever been. During the next 4 years Addy’s seizures became progressively worse. She went from having one type of seizure to 5 different kinds, and from 2 pills a day to 25. Again during all of this even the lengthy hospital stays Addy continued to have a smile, she would sing Justin Bieber for all the nurses and dance down the hospital hallways even after a day full of seizures.
Addy and our family got the honer of getting picked to go to Disney World with Ace and TJ’s grin kids, a local charity that takes several family’s each year that have children with a chronic or terminal illness to Disney for an all-expense paid trip. This trip was one of our happiest memories. Addy loved Mickey and Minnie and the whole Gang. Our family has precious memories from this trip that we will treasure for a lifetime.
In 2012 it was decided by Addy’s Drs that we needed to start testing to see if Addy might be a candidate for brain surgery to possibly remove the area that was causing all the seizures. Addy was referred to Duke Children’s hospital where we began the long journey of testing. Addy had to endure more lengthy hospital stays; she had to have a portacath inserted due to her veins being shot from all the times she had to go to the hospital due to seizures. Addy had to have several EEGs during which they would take her off her meds so that they could see exactly where the seizure was starting.
In December of 2012 things were getting progressively worse. Addy was having 4-5 larger seizures a week lasting from 10 minutes to an hour or more. Addy had to go to a modified day at school in her special needs class. Addy loved school so much that she would try to trick her Father and myself and tell us she felt fine when we knew she didn’t just so she could be at school. Addy is the strongest bravest most pure of heart person I have ever met or that I will ever meet. Addy received a make a wish from the Make a Wish Foundation, she decided on Disney World. She looked forward to that trip everyday counting down the days till we were to leave on April 3rd…
On February 24th 2013 we walked into church Addy of course was dancing in and waving to everyone. She went to their Sunday school class and we went to ours. After about 15 minutes someone ran into the room to grab me and tell me Addy had fallen out of her chair. When we got to her, Addy started to go into a seizure. We had a PA that attended our church and several EMTs- one of which was her Godfather. Addy was transported to the ER by ambulance. She had 5 seizures on the way, but once we got to the ER they got her stabilized.
Addy had done this several times, she would have several seizures then stabilize and we would be able to take her home after a period of waiting to make sure she did not have anymore. We got to take Addy home that late afternoon. She was very tired and out of it due to all the meds but we had seen all this before. After being home for 45 minutes Addy went into another seizure, it was quite severe and she had bitten her tongue. First Responder’s arrived then emts. I was allowed to ride in the ambulance but had to sit in the front. Before we got out of the driveway CPR was started.
I prayed and begged God to help my baby.
CPR was continued all the way to the ER.
When she arrived at the er she was whisked away and I was sat in a tiny room with my sister and mother in-law. After what felt like an eternity the nurse who had Addy earlier that day came to get me she had tears rolling down her face. I knew then that my precious girl was gone. When we got to the room they were still doing CPR, it had been 45 minutes, I begged God with all my might not to take her to please let her stay.
Addy passed away that night. The greatest joy in life is holding your baby for the first time and The Greatest Pain in life is having to tell your child goodbye.
My husband arrived and we held our precious girl. We then had to go home and tell our 3 other small children that there sister had gotten her angel wings that night. We did not go on the make a wish trip to Disney, we did not want to take the opportunity away from another family. My mother and I came up with a way to help Addy’s Legacy live on because she had such a giving heart and wanted so much to give to others. Addy’s Giving Heart was created. The purpose is to provide small individual boxes to children in the hospital. We hope to spread kindness one box at a time. This is just a small way to help us let Addy’s legacy of giving live on.