The Niederer's: One year ago--Kinley's epilepsy

It was about this time 1 year ago that I started having knots in my stomach, and a feeling I couldn't shake for 3 solid days and not being able to figure out why. I remember I was holding Kinley, sitting in our recliner, our only chair at the time since we had just moved into our new house, and talking with my dad. We had carpet layers over re laying carpet in our closet since they had messed up the first time. Kinley woke up from her nap in my arms and did the weirdest thing, which I now know was an aura/ partial complex seizure. I remember watching that, and thinking, "what in the heck just happened?" Even dad said, "hmm...she must just be really tired." It was super odd and I can still to this day remember the knots in my stomach and how off and not right it felt. That was Kinley's very first seizure and also the beginning to a very, scary, awful time in our lives.

I've had a lot of emotions run through me this month just because last year this month started a year of a very scary, emotional, hard year. Loooots of sad and scary memories. The COUNTLESS seizures I had witnessed. Most of them at home because I was too terrified to leave the house, but the ones I did experience outside of my home, sometimes alone, anywhere from at the grocery store, the restaurant, my parents home, the car, hotels, and the hospital. The emotions we went through, the sleepless nights. And when I say sleepless, I mean completely sleepless nights.

I counted it up once since I had tracked every one of Kinley's seizures. I believe she had 44 grand mal seizures in 26 days. Her most reached 8 grand mals and I want to say probably AT LEAST 4 partial complex seizures in a 24 hour time period, and probably well over 100 aura's/ partial complex seizures in about a 2.5 month time span. And, I witnessed every. single. one of them. So realistically, she probably had about 200 seizures in a 2.5 month time span. That's why I say, to me, it is seriously a miracle she is alive and still thriving.

I look back now and wonder why we did or didn't do certain things. I don't know why we never took her to the ER with her first seizure. You talk to any other parent and that's their first instinct. It wasn't mine. I took her to 3 different pediatricians instead. I truly am one that feels everything happens for a reason and I think that there is a reason we took her to 3 different pediatricians instead of the ER. There's a reason we ended up at Primary Children's instead of seeing the only pediatric neurologist here. There's a reason I woke up earlier than her the one day she had her first big seizure. I think everything happened the way it was supposed too.

I had a few different people at the time tell me that I should try to look for the blessings in this trial. At the time, I was kind of annoyed and a little angry because that's not what I wanted to hear. All year long I have come back to asking myself this and still not being able to figure out what blessing came from it. I mean, I already had a soft heart toward people, especially children with medical conditions. I felt like going through the trial of infertility had opened my eyes to things more than anything. I knew doctors, anxiety, I knew how bad things could suck. I could imagine how uncomfortable hospital stays were. How hard it was for families to be separated while one deals with a sick child and the other still has to work to bring in an income. I knew all of this. It wasn't until a conversation I had with Caleb a few days ago that I finally figured out what blessings came from such a hard trial. Me and Caleb both feel that we truly would not be where we are today had we not gone through such a hard trial. And FINALLY figuring out maybe WHY god gave us this trial has given me some relief.

It's been an emotional and hard year for Kinley and both Caleb and I. I never pictured before having kids, that I would have to witness what I have witnessed, that I would have to put my baby through what she has gone through. And that literally hurts my heart having to watch her go through it. I hope and pray more than anything that this is something she can grow out of. That the blood draws, medication and tests can come to an end, that the bad memories and anxiety from witnessing things will at least fade.

I wish I could have enjoyed those months more with Kinley instead of living in complete fear. I often feel robbed of such a special time because babies grow SO so fast and I feel like I missed out on Kinley's 4th, and 5th month of life. She literally just slept and layed there those 2 months. She was so sick. I see other people post about their babies and what they did or are doing at that stage and I do wonder what Kinley would have been like had she not been seizing so much.

I had never relied on the Lord more than during that time. I went off promptings of the spirit, relied heavily on priesthood blessings, and support from our families. It was a testimony strengthening experience.

Overall, Kinley is doing excellent. I cherish my time with her more than anything. Especially because I have seen just how quickly something so good can turn to so bad. I look forward to a happy and bright future with my girl. She makes me genuinely happy, my heart happy, my life exciting and bright. I could not imagine life without her. Me and Caleb are so blessed to have such an amazing and hilarious girl.

We love you Kinley. It's been a year, and we all think this next year fighting this will go much smoother. We love you Kinner bug!

This was the day she had a seizure at the restaurant, then home, then in the car when we headed to Primary Children's. I ended up getting rid of this outfit. It brought back too many bad memories.