Wow, I really didn’t think I would write this much, but I guess I needed to.
Once Caitlin’s steroids really started kicking in she was very hard to handle. She would literally go around knocking everything over and was always hungry. She wouldn’t sleep much either. It was very hard to stay calm and understanding during this time. I was exhausted. We had planned a trip to the coast for the Labor Day weekend, but all I could think about was how stressful it would be under the circumstances. We had an appointment with the Dr, so I explained how everything had been going. He understood and prescribed her something to calm her down. It was liquid so it would go under her tongue and work quickly. It only took a couple of drops.
Wow was that the miracle medication that she and I needed! She must have been crawling in her own skin! We had a wonderful time as usual at the coast and all was well again…until it wasn’t.
Remember the paragraph that I threw in about my then husband and said it would be relevant later? Well, this is where it starts to be relevant. My second hell.
I don’t know how long after we got back, but Caitlin’s calming medicine, which happened to be a benzo started getting lower than I thought it should for the amount I was using. Do you know where this is going? Yep, father of the year was taking it.
Disclosure: Within the last few years my ex-husband has completely quit drinking and has been drug-free. It took him a long time to get there and a lot of pain and hate, but I have to disclose this so you won’t hate him too much! Fatherhood, however, never really kicked in.
At first, I thought I was just going crazy and I must have not paid attention to how much was left. Afterall, the only thing he had done as far as drugs was pot at this point. I don’t remember how exactly I found out. He may have started acting weird or the tiny bottle was just going way to fast. I confronted him and of course DENIAL. The medication had to be refrigerated so I couldn’t hide it very well. So, I started marking the bottle after I used it. Sure enough, he was taking a lot! this was concentrated liquid and was a very small bottle.
I tried the quilt trip, yelling and even tried hiding it in the fridge which couldn’t happen. I’m not sure why I didn’t put it somewhere with an ice pack. Maybe I didn’t have one or just didn’t think of it. Eventually I needed a refill of this controlled substance and thankfully she wasn’t using as much as she had been. I got a refill and it was gone in a couple of days. I was so beyond angry I don’t know how I didn’t punch him in the face. He was the only one working at the time because I had to take Caitlin to so many appointments there was no way I could work. Actually, he was on personal leave at this point because he was obviously distraught about caring for his daughter.
Well, I had no choice, but to go to the doctor and tell him. This had to be the best Dr ever. He always thought of Caitlin first. He knew having my ex arrested would cause much more stress on Caitlin because mom would be stressed. So, he prescribed a pill that could be crushed and put in her G-tube (forgot to tell you she got one of those. She wasn’t eating enough and apparently you can’t live on oatmeal and Teddy Grahams!)
Ok! Problem solved right? Do you know any drug addicts? Then you know they will do anything for their drugs. I hid the bottle, but guess who was watching without me knowing? Seriously?! I now not only have to care for my 2 children, one with cancer, I have a drug addict to manage. I started to get creative enough to throw him off and eventually, Caitlin didn’t need the medication, so problem solved for now.
Caitlin’s third year was a scary one. She had a great year and was doing really awesome until, you guessed it, September. We had done an MRI about a week before and I had argued as I did every time about the fact that Caitlin is very sensitive to the sedation medication. Apparently some anesthesiologists are narcissists as well. He literally smiled this “you’re telling a doctor how to do his job?” smile. I looked at him dead in the eyes and said, ” When it comes to a mother’s instinct you need to listen”. I don’t think he did. She slept for 2 hours after the scan, which was not normal.
I had been a year and it was time for our yearly Labor Day trip to the coast. We had a great time as usual. I remember Caitlin woke up early one morning and I took her outside on the balcony to eat her oatmeal and watch the sunrise. It was beautiful. Until it got up too high and with the ocean reflection started to blind us both!
The last day of the trip as we started home, I noticed that something just wasn’t right with Caitlin. Her eyes started to get droopy and she just wasn’t acting right. We put her in the car seat and drove home. When we got her out I don’t remember who was holding her, but she couldn’t keep her head up or her eyes open. I immediately called the doctor. This is another blurry time. I don’t remember if we went in, but he basically said all we could do was put her back on steroids. The next day Caitlin couldn’t even get up from bed. The Dr suggested hospice…