Dermot


My beautiful Dermot. This summer has been tough for him. His seizure disorder continues and so does our journey with doctors, therapies and drugs. At one time this summer Dermot was on 4 different medications all at once, not surprisingly he turned into a lethargic blob. We said enough, he's now on two medications and is being slowly weaned off one of them, Klonopin. In case you've never heard of it, it's in the barbituate family of drugs, we didn't realize 18 months ago what exactly it was when we agreed to give it to him. Our hope is that he'll continue to be less drowsy, drooly and floopy as we wean him from it.

Dermot has been very busy with appointments this summer. Along with the two weekly physical therapies and occupational therapy, I have taken him to see a chiroprator, an herbalist and a physiatrist. In the coming weeks he will go to the opthamologist, have an MRI and a few blood tests to check for genetic disorders. I started to get more active in his healthcare because I fear something is happening to Dermot. He's not quite what he used to be. He's lost some skills and abilities. It's breaking my heart. We are determined to try new treatments, alternative treatments to make Dermot better. I'm not looking for a miracle cure, but I'd like him to have less seizures. He has around 30 a day.

I feel blessed that wehave a family with such love. We celebrated Dermot's second birthday in July and he was surrounded by many people who love him dearly.

Comments

Post a Comment

Popular posts from this blog

Note to my inner child.

Image
 Suzy, I’m looking at a photo of you when you were coloring. I wanted to tell you a few things. When you grow up you will become a beautiful, strong, smart, funny human. Unfortunately, there will be a lot of pain in your life. I know right now mom just left. I think you know it wasn’t your fault, but I wanted to tell you again. Mom had her own demons to deal with and didn’t have the right tools to figure them out without hurting others. She loves you. I hesitate to say that because it’s still hard to believe that she would leave such a kind, creative little girl such as yourself. If I was your mom I would have squeezed you to pieces every day and been wildly proud of you. You have always had a level of compassion in you that came naturally. Your heart is big. I think that’s why it hurts so much when people let you down. You didn’t deserve to be forgotten or disregarded. Your light keeps getting dimmer because no one was there to be on your side and make you a priority. It happens.
Read more

Fourth time

Just as I crossed the last thing off my grocery list, I heard a muffled chime from my purse. I thought to myself, I wonder if its Dermot's school. Not really believing it was, but teacher Jan was on the other end of the line. "Hi Sue, Laurie has administered the Diastat for Dermot", she said with a tinge of sadness in her voice. "Okay, I'll be right there" I said. I looked down at my full cart of much needed groceries and pushed them to the register. One part of me wanted to continue and check out as if nothing was happening, the other, wiser part said "get the hell out of here". Another abadoned cart at the grocery store. This time I call Joe, "I'll meet you there" he says. Three stoplights later and a quick jaunt on the highway and I'm there. Wiped the tears away and ask the receptionist for admittance to the special education wing of the school. I walk briskly to Dermot's classroom. The other little boys are having circle
Read more

Letter to Dermot

Image
"Letter to Dermot" Dermot, I’ve been trying to put off this letter for quite some time. I just gave birth to your little brother and have realized how heartbroken I am over you. I look at pictures of you and get a tinge of sadness where I should get joy. I see the things you cannot do and the things you won’t be able to do. I’m so sad about it. I feel responsible, so much more than anyone else knows. I look back on the day you had your first seizure and I’m so angry with myself that I didn’t know what was happening. I feel like the length of time was my fault and that it caused more damage to your brain than was necessary. I’m so sorry. I know that you deserve the best in everything for your life and my regrets run deep. God has a plan for our family, I know. All of the challenges that you go through help make us stronger, but I wish more than anything that I could take all the pain away, all of the drugs, all of the therapy. I sometimes imagine you as a normal little guy get
Read more