2017. It’s here. I mean seriously. In just two short days I celebrate the 26th year of my birth. It’s insane! With the new year though, comes some changes.
As many of you know, I have a daughter with disabilities. She was born with the second rarest brain disorder, schizencephaly, which because of this diagnosis, also brought on the diagnosis of cerebral palsy. We have been going to doctors and therapy services since she was just under a year old, but I felt that things just weren’t going anywhere. We hadn’t seen any doctors for over a year because the last visit was simply a “check up” and we were told that we don’t need to be seen unless something changes. Well of course nothing has really changed, but I felt like I wanted more. I wanted answers. Someone who would actually listen to hear me, not listen to respond. I really felt like Kaylinn has just been brushed off to the side because she isn’t the “typical” schiz kid.
I made a visit to our doctor here in Orange City and told him I needed him to do me a favor. I asked him if he could possibly get me a referral to Gillette Children’s Hospital in Saint Paul, MN. Luckily, the doctor has always been very pro-Kaylinn when it comes to her health and has usually been able to get me to the places we need to go medically. We did get the referral, but it was months away. Over six actually. But hey, we got it! Just last week, Friday the 6th, we had our appointment. Why did I choose Gillette? It’s a hospital that specializes in CP and I hoped they would have something I could take home and chew on for a while. I didn’t know what to expect, but I was optimistic going into this appointment.
The doctor came into the room automatically began to work with Kaylinn. He was having her push and pull and squeeze and run, just to get an idea of how her CP affected her. He asked me numerous questions and never belittled me. I found out he also has a daughter with special needs, which made him even more relate-able. He spent nearly an hour with us and not once did he make me feel like I was paranoid or over-reacting or stupid. He ordered x-rays of her legs, hips and spine, got set up to schedule an appointment for her to come back in six weeks to get an EEG done to determine if she is having any seizure activity, set up an appointment with neuropsych, and also wanted to set up an appointment with a orthopedic doctor to determine if we need to give her better aid when it comes to her brace and other equipment we might be able to get to assist her.
We did the x-rays that day and although I cannot read x-rays, I can look at a picture and notice one side is not like the other. Her left hip was not symmetrical to her right and so it could possibly mean surgery down the road, which is quite common for CP patients. Another thing I noticed was that there was a little bit of a curve to her spine, most likely due to the fact that her left leg is shorter than the right and she is not standing straight up balanced. After the x-rays we went home and will be going back next week for one of her appointments. Overall, I am very happy with the decision to go to this doctor. He instantly said we need to get a team together for Kaylinn and wanted his best people on the team. I also had a proud moment when he walked in and said he was really impressed with how independent Kaylinn is, he was actually expecting to see a wheel chair with her.
After beginning the new year and meeting this doctor and getting all these appointments made, I decided it was time to make one more change. As some of you know, I work at Ace Hardware here in Orange City. I love my job. It has taken a toll on my family though. I feel like I haven’t been home enough lately. My son is 4 and still doesn’t know how to read and I put that on myself. My daughter is falling behind in homework because her time management isn’t the best and I’m not here to help her when she’s stuck. My husband is keeping this house running on mac and cheese, frozen pizza and chicken nuggets. I need to take it back. We need to be a family again. I need to put my kids to bed every night. I need to buy ingredients to make my meals, not meals made with ingredients I can’t pronounce. Kaylinn has appointments. Her health is on the top of my list of priorities. For all these reasons, I have decided to quit my job. In two short weeks, I will be saying goodbye to Ace and hello to a new lifestyle. Well actually, it’s old. I was a stay at home from 2012-2015.
Right now I just need to focus on my family. I’m going to miss my job at Ace. I’m going to miss working with everyone there, I’m going to miss my regular customers. I’m still here though. I am going to be stronger. For my kids. For myself. I need to work on me. I need to love myself more. Take care of myself and stop living in the fast lane. I get irritated because we are on a time limit. With me not working, I will be able to stop and breath. To appreciate what I have instead of just brushing it to the side. I don’t know what life has in store for me, but I feel right now this is what I need to do. On the plus side, I’ll be able to bring you more deals. 😉
Thanks as always for the continued support. Here’s to 2017. Let’s take this journey together!