Hey, Jenn here.
As I write this it is 12:32 am and even though I have to be at preschool in a few hours and I know I need to sleep…..I can’t. I am sitting in my daughters bed watching her sleep. I am watching every movement, every twitch, every breath…..yesterday my daughter was diagnosed with epilepsy and tonight is her first night taking her medication…I am scared of how it will effect her….so I am wide awake when I should be asleep.
One Sunday afternoon almost 4 weeks ago now, my daughter was laying on the couch watching tv and I was downstairs doing laundry. When I came upstairs I found her stiff, drooling, eyes half open, and unresponsive. As I talked to her she just kind of sounded like she was humming or groaning under her breath. Whe she finally opened her eyes she looked at me as though I was a stranger and asked through slurred speech “who are you?” To which I said “I’m mommy” she said “your a mommy?” And I said “yes, I’m your mommy”. I then ran to get my husband who was outside mowing, and he came in. By that time she was more awake and knew who we were and her name and age, but her speech was still slurred (very unlike my child) and she kept falling back asleep. We would talk to her and get her awake, but when she was awake she would just cry until she fell back asleep. So we ran to the truck and raced to urgent care who said we had to go to the ER. once at the ER she was given an IV, had a chest X-ray, Head CT, blood work, and a urine test….all of which came back normal. So we were sent to a children’s hospital for 24 hour observation and an EEG. She was quite happy to ride in an ambulance…..she talked that poor EMT’s ear off I think, but that is my little girl. Her EEG came back normal so we were sent home with medicine to give if she were to have another that lasted longer than 5 minutes and were told if she had another she would have to see a pediatric neurologist and more than likely go on medication. But that all children were given one seizure before any medicine was used and it was not uncommon for children to have one seizure.
Well as you can imagine we were on pins and needles watching her.
My husband and I were signed up to counselors at the teen retreat for the local Bible Camp which was 2 weeks after her seizure. Well everything had been fine, so I took her down to stay with her granny. I left her on a Thursday and I texted my husband and my best friend that I was having a very hard time leaving her. Friday at 1:38 I got a phone call I will never forget. I still hear it at least 5 times a day in my head. My mother in law out of breath and panicked calling to tell me my daughter was having another seizure. I don’t remember what my first words were to her, but I know I told her to make sure she was on her side and couldn’t get hurt and to call 911. Luckily my brother in law lives behind them so he was able to come up there and be there with her. I got off the phone and tried my husband who I couldn’t get the first couple of times…..the next minutes are a blur….I know I screamed a lot, cried a lot, screamed some more, and managed to put on a shirt before I ran out of the house. I didn’t know what to do. I was shaking from head to toe. I was flying down the road with my hazards on. Knowing that my only purpose at that moment was to get to my child who was 200 miles away. Once I talked to my husband I called down more. Then I talked to my brother in law who told me she was out of the seizure and I calmed down more. Then I talked to the EMTs who told me all vitals were good and I calmed down more. Then I talked to the preacher and a doctor from our congregation and I calmed down more. Then I met my husband and we drove to our little girl, and I cried the whole way down there. There are not words to describe how my heart felt when we pulled up and I saw my little girl playing with her cousins and my father in law as though nothing had ever happened. Just to see the smile on her face while she rode on his shoulders and run bare foot through the grass…..there are no words for the feeling of holding her and telling her I loved her. We came back home that day.
I called the doc office and left a message that she had another seizure so we needed to get into a neurologist. I was called back with appointments for July and told that was the first openings at 2 different clinics and they would put us on a waiting list for cancellations. I cried she I got off the phone and we discussed talking to doctors at church to see if there was anyway in sooner. This was on a Friday.
Sunday morning in between Sunday school and worship my daughter was sitting in her daddy’s lap and had just given him a hug when she leaned backwards…we thought she was playing. Then we saw her eyes…it was a look of surprise and then fear…then her whole body went stiff…she was having her third seizure. I still see her like that so many times during the day, it is not something you forget. We yelled for a doctor….I meant to call one but said another, but he was there fast. I grabbed my phone to check the time and grabbed her medicine for if it lasted longer than 5 minutes, my husband had checked his watch and was still holding her. The doctor walked us out to the foyer and we layed her on the couch….another member that’s a doctor was there….I am still not sure how he got there so fast. They watched her and talked us through it and made sure that others gave us space. I don’t know who was with us when we first went out there, I know there were people there because one of the doctors asked them nicely to give us some space. I do know that I was knelt down so I could be as close as possible to her and that I was scared out of my mind and crying and one of the women knelt behind me and hugged me and put her hand on my shoulder and that meant more than I could ever express to her. I know that it lasted about a minute and a half and she opened her eyes and one doctor asked her who I was and it took a few seconds, but through slurred speech she said “Mommy”. Then she fell asleep. Then the doctors asked us questions and talked and reassured us she was fine and she would sleep because that was normal after a seizure and that it was unacceptable to wait until July to see a neurologist. One of them said he would call our doctor after services and get things moving because she needed to get in.
On Tuesday we went to the pediatric neurologist and he answered all our questions and
told us that she was epileptic and we needed to start her on medicine. He explained the medicines and the side effects and was very helpful.
The drug store had to order her medicine so tonight is her first time taking it. She took it before bed and I am not sure if it was the medicine or just that she has had a long few weeks but she was very sleepy tonight and as I type this she is sleeping soundly….although tossing and turning, but she’s a wiggler or mover (how she describes herself when she is asked to be still).
I think I write this as an outlet for all that has been in me over the past month, but I have really come to realize something. Gods providence is amazing. I had been thinking about this and my mother in law and I talked about it today. We were so blessed with our move to this town and this congregation.
– I am blessed to get to be a stay at home mom now, I had a hard time handling working while Kaitlyn was healthy…..there is NO WAY I could have handled leaving her knowing that she could have a seizure at any moment.
-I am blessed that Kaitlyn goes to preschool at our church. I help out there a few days a week so I get to be with her and not leave her. They also are my friends and sisters and understand that I don’t want to leave her and they are okay with me staying there even when I am not working. That way she gets a sense if normalcy and I still get to be with her.
-We are blessed with doctors in our congregation who have helped us with advice in the ER, over the phone, administered to her and us during her third seizure, helped with getting in to a neurologist, and have told us they are there if we need anything at all.
-We are blessed with a sister in our congregation who is epileptic. So she has lots of knowledge, experience, and understanding to share.
-I am blessed with a congregation that has kept us in its prayers, sent cards, gifts, visited us at home and in the hospitals, called, texted, offered to be there to listen, been there with hugs, the list goes on and on.
-Since the first seizure we haven’t let her out of our sight for very long…this has led to some unexpected bonding time. She sorted laundry all by herself and had fun! We play more. We color more. We are together more.
-We have wanted a second child for a couple years now, and I am always disappointed when it doesn’t happen, but the doctor feels the seizures are genetic…from me….what if I passed that on to another child? What if we had a baby and I was distracted with the baby and Kaitlyn had a seizure and I wasn’t there to get her to a safe place?
I would much rather she not be epileptic but she is, now we know, now she is on medication, and now we can move forward. But moving forward is so much easier knowing that God is in control, and knowing that he has given us such a tremendous support system between our family, friends, and our brothers and sisters in Christ. No matter how sad you may be, no matter how it may seem that things aren’t going your way, no matter how scared you are, no matter what……remember God is in control and working in your life. You may not see it today or tomorrow, but one day you will.
Bye for now!