*Le Sigh* Life keeps happening around me and I can’t quite tell if I’m an active participant or an innocent bystander. I’m basically treading water at this point. The recap for 2018 will be in italics and updates will be in bold. When I get done with the back and forth, it’ll be just regular font. Enjoy…..and I say that sarcastically. It’s exhausting to type out and to read. I can’t believe I’ve been living it for 2 years.
Since 2017, our lives have been anything but normal. Eventually, I’m going to have to let go of what I thought my life would be like and accept the life I have. Here is a brief recap of 2018…2019 was more of the same. Wash. Rinse. Repeat.
The start of 2018 consisted of the leftovers of 2017. Just ten days prior to the start of 2018, we found out our son has Tourette Syndrome, and we spent the majority of 2018 doing the recommended therapies to help him: occupational therapy, speech therapy, psychologists, psychiatrists, many meetings at the school for accommodations, assessments, interventions, plans, follow-ups. For the last quarter of 2018 I was spending at least 1-2 days a week at the school to get services for either my son or my daughter (whom we recently found out has dyslexia). Prior to each meeting, I was meeting with an advocate from the Exceptional Family Member Program provided by Army Community Services to brainstorm on ways to help my kiddos. Basically, Monday-Friday I was in meetings to make sure my kids had everything they need to be successful in school. Update: My son went to a total of 76 appointments in 52 weeks. I went to 18 school meetings between August of 2018 and February of 2019.
On a personal note, I started something that I haven’t wanted to share with many just in case it doesn’t pan out. Since then, I’ve decided that no matter what direction my life goes, I’ll keep on this plan until it’s obvious I have to stop: I’m in school again. This time I’m working on pre-requisites to apply for a master’s degree. I’m basically done with the pre-requisites for graduate school and I applied over the summer. More on that later.
Honestly, it was an exhausting year and I’m glad to see it come to an end in that regard. Two-thousand eighteen was hard, but I’m hoping 2019 will be easier. Spoiler Alert: It wasn’t.
I’m so happy that my son has come such a long way with all that he’s had to overcome and work through. It makes me feel that he’s going to be okay, in the long run. He’s lost any gained progress…..And I’m so excited to start on this new adventure of school. Eventually I’ll figure out what I want to be when I grow up. I haven’t, yet.
Now for 2019:
My children eventually received their services in their old school, only for us to move in July of 2019, for them to start in a new school in a new state, just to have accommodations taken away because the new school didn’t know how to provide the accommodations or services. All of that hard work in Kansas was for nothing. Literally nothing. My children are no better off now than they were a year ago when I was elbow deep in fighting for them to get the services and accommodations that they needed. In fact, I feel my children have declined in the progress they had made while in Kansas. My son no longer has his morning work outs at the school to help with Sensory Processing Disorder, and my daughter no longer has reading services that are developed for children with dyslexia. My daughter’s grades have dropped drastically and my son’s behavior is off the charts. Literally, his behavior chart is overflowing with comments about his behavioral symptoms. Not behaviors, but symptoms of his neurologic conditions. Yes, multiple. He was diagnosed with autism this year, and things just aren’t getting easier. My daughter is having meltdowns almost daily, the doctor has diagnosed her with anxiety and a preliminary diagnosis of oppositional defiant disorder, on top of her already having ADHD. Both of my children have ADHD. It’s hard for everyone.
Like I said above, we moved to Florida in 2019 and I was looking forward to it. We were finally going to be close to family, and in our own house that we built, and things were looking up. School had been going well for me in Kansas. I was getting great grades, I made a new friend that was literally in the same boat as me and we fortunately sat next to each other on the first day of College Chem II. She also applied to grad school and she got in! I’m happy for her and proud of her because I was able to be her lab partner and see how hard she fought to get her spot. I’m still waiting for mine, and that’s ok. I’ll wait. My time will come.
Almost everyone I worked with knew that I was working toward this goal, and I thank them for their support. I’m still working toward it since I have one outstanding class before matriculation. However, the update is that I applied in August of 2019 for a Master of Science in Anesthesia to become an Anesthesiologist Assistant. So far, it’s been crickets on an interview and I have no idea if I’ll be accepted. I definitely won’t be accepted without an interview and like I said, I’ve heard nothing yet. There was an open house for the school that I went to and I met someone there who is older like I am, and already has a great career, just like I do. They were interviewed and just got an acceptance. Again, I could not be happier for them, but I can’t help but feel like life is happening around me and mine is stuck on the rinse cycle. I’m trying to be patient and I’m trying to remember that God wouldn’t bring us to Florida without there being a reason. I assumed that reason would be for me to attend this school, but I could absolutely be wrong….and I need to be okay with that.
I need to be okay with a lot of things, and I’m really not okay with them. I’m having a proverbial tantrum in my mid-30’s because I just can’t get what I want. I worked hard, where is my prize? Yes, it makes me sound entitled, but in what world does hard work not pay off? Apparently, the real one. These are the things that no one prepares you for.
No one says when you are having kids, “Hey guess what, congrats and all, but they could be born with a neurologic condition that has no cure”. And you’re over there with your pre-schooler like, “Huh? What do you mean? This is all normal kid stuff, right?” And people say, “Oh no dear, this is not normal”…..and you had no idea because you’ve been living with it for years and you only know what you know. So if your kid is acting a certain way, you don’t even know that it’s not normal…..until they tell you. Then they tell you these are all the things you should do to help your child….and you’re only one person and you can only do so many things and you feel selfish for trying to maintain this image of a normal life by furthering your education and your career and you work so hard to make it normal….and it’s not. It won’t be. You think that if I do this totally normal thing that your life will be normal. You fight against the abnormality without even knowing, and you do it with a smile on your face and your hair and make up done, because if the world outside thinks you’ve got it all together, maybe you’ll believe it too.
Well, here I am: 2019 Jen.
2019 Jen learned that Dr. Seuss wasn’t wrong. I’m in The Waiting Place. And I hate it because I’m afraid this IS my normal, and I just don’t know it yet.
2 Comments Add yours
Jenny, I heart you and your family. Please let me know how I can support you and the kids.
You are so kind! We’ll be okay. Just trying to figure things out. Putting some school things on pause for a bit until things settle down.