A Day In Our Life……

We were driving to Reagan’s paddleboarding practice. It is her favorite extracurricular activity. My husband had just left the same day to go back to Texas. (If you are not caught up with our story, we recently split our family between Texas and California so that we can have Medical Cannabis as an option for our child) It takes a couple days to fully adjust back to a single parent lifestyle. (Sidenote: I highly admire people who do this on a regular basis.)

We were about four minutes away from the Dana Point Harbor when I heard a loud grunting noise from the back seat. I haven’t heard this horrible noise in so long. I turned to see Kennedy seizing in her booster seat. This has never happened before. There was no where to pull over, my heart was racing. I lost all sense of what to do and called my husband. I have no idea why I thought right then was a good time to make a call, I guess I just needed support. He had just landed in Texas and was in baggage claim. I knew what to do, but I don’t know what possessed me to call him. I found a safe place to turn into and immediately got out and held her. She had just finished seizing so her body was slumped over like she had died.

My oldest child, Reagan, was scared to death and pale white. When I stopped the car and saw her slumped over I yelled “hold her head up.” Reagan retreats into another world when these things happen. I propped Kennedy up in the car seat and asked Reagan to hold her head. We were about 13 minutes away from home which in these instances feels like an hour. Kennedy was postictal (altered state of consciousness after an epileptic seizure) during the ride home and lately she has been a handful during this time. Poor Reagan was in the back seat trying to help her sister in anyway possible.

We got home and I carried Kennedy (50 lbs.) up four flights of stairs to her bedroom in our condo. My legs gave out from the adrenalin and we both went down on the 3rd flight of stairs. Thankfully I took the brunt of it. I laid her in bed and changed her clothes and cleaned her up as she had wet herself during the seizure. At this point, I’m numb to the world as normally daytime seizures mean cluster (back to back) seizures due to illness. I needed to unload the car as quickly as possible in case there were more seizures…..

I carried two paddleboards up two flights of stairs, cracked my shin on the fin of one of the boards. Tears immediately came to my eyes. Not yet, I told myself, there will be plenty of time for tears later. I just wanted to sit on the ground and cry but there was so much more to do. Reagan was watching the video intercom while I was rushing up and down stairs, cleaning the pee ridden car seat and doing everything I could to remain calm.

We had just spent the most beautiful two weeks with my husband. Kennedy was surfing and doing things in the ocean she has never been able to do before. She spent hours playing, bodyboarding, surfing, bodysurfing and anything else you might do in the ocean. We truly try to live each day to the fullest as we have no idea what the future holds for any of us.

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I then called my husband to let him know Kennedy was sleeping and to go over our cluster (seizure) plan. Normally, we give klonopin as our rescue medicine, but we had met recently met with a Doctor and got Kennedy’s letter for Medical Marijuana. I had the medicine in hand, trying to go over all the figures for dosing. I was ready, and for the first time, I was NOT terrified of giving her the medicine we had on hand.

Thankfully, she slept for hours. I held Reagan in my lap and explained to her that I was sorry we had to miss her practice. She didn’t need me to tell her that, of course, she is used to Kennedy’s health being a priority in all of our lives. But, I told her it was okay to feel whatever she was feeling. Mad, sad, scared…..it’s okay to cry. She held onto me and I onto her in quiet trying to block out the horrible memory of Kennedy’s twisted, shaking body in the car.

Soon after, my husband called to check in and I lost it. All the emotions of the past couple of hours flooded over me and I wept. I cried because I felt it was my fault. Kennedy was 18 days seizure free when I decided to add more supplements to the daily protocol. We had all of her seizures nailed down to only when she falls asleep in the safety of her own bed. And most of the time Reagan was asleep and did not have to partake in the seizure rituals. But in one day and two supplements, I turned a simple car ride into a horrible nightmare.

I cried because Reagan is so compassionate and should not have to give up things she loves to do in exchange to watch her sister suffer. I cried because I have been trying so hard for 6 years to heal my little girl and as far as we are, I still want more. I cried because my husband had just left that day and I was alone. I cried because I just want a normal family and we are the furthest thing from it. I cried my heart out and he listened and encouraged and helped me remember all the things she had just done during his visit and how far she has come in 3 1/2 years since changing her diet.

I woke Kennedy up after about three hours to feed her dinner. She ate like a champ and was confused as to why she was asleep so early in the night. She had just memorized a poem for homeschool that afternoon and I wanted to know if she would still remember it. She was able to recite it perfectly. You never know if your child is going to be the same after a seizure.

I grieved another seizure, put the pieces of my heart back together and started a new day. I logged all information pertaining to the supplements I thought were responsible and started over.new day

I try to only blog about encouraging things because really truly Kennedy represents hope. But recently someone was telling our story to another person and they scoffed at the thought of us using Medical Cannabis to help our child. This blog is for the ignorant people who have no idea what it’s like to live in our shoes. We are thankful that we have this option for our little girl and we pray no one has to endure the decisions we face on a daily basis to keep her healthy.

 

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3 Responses to “A Day In Our Life……”

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  1. Stephen Betzen says:

    That was an amazingly powerful testimony. Hope is not the absence of hardship and that post is encouraging, in that it is honest, raw and demonstrates the strength of a families love.

    Kennedy represents hope because she is overcoming something incredibly harsh for a child to ever endure.
    Kennedy represents hope because of the strength of her mother to go wherever she needs to be, to provide the best life for her daughters.
    Kennedy represents hope because her father continues to work where he must to ensure his family has the resources to provide all the care that is necessary.
    Kennedy represents hope, because to me, your family and their strength to endure represent love.
    What better place for hope to reside than in the presence and that strength of love.

    Because of people like you and stories like yours, we will not stop fighting in Texas.

    Sincerely,
    Stephen Betzen

  2. Mandee Ordaz says:

    Been there, done that. Hang in there, Dawn. It is good to let the emotions out and so glad you gave Reagan the permission to feel negative feelings. :( I am curious what supplements you blame? Keep trudging as you fight the fight! Try not to forget how amazing it is that Kennedy’s development has not been damaged. Armando still cannot understand any verbal commands or sit and focus on anything. Today he learned to open the gate and ran down the street while I was in the kitchen w/o me knowing. Luckily his big brothers saw him- one ran after him and kept him from going into the street and yelled to his other brother to come get me. Dravet siblings are awesome. My boys have enjoyed attending sibshops to help them process all of the emotions that come along with the lot.

  3. Terri Hodges-Vergara says:

    Hi Dawn! We are here in Northern CA. from Rowlett too. We moved in Jan. of 2014. Sounds like we are close in Rowlett. Our home is on Dalrock :)

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