Why’s it gotta be so hard?
I’ve said that hundreds of times the past month as we’ve been trying to get Rosie back into high school and figure out what her day looks like. And, as we’ve seen an increase in the spitting up blood thing. It shouldn’t be so hard to do what’s in my teen’s best interest or to find answers as to why she’s bleeding somewhere internally for the past thirteen months. It’s baffling.
In December, we met with school to start the process to get Rosie on the path to paced re-entry after a fight to get her transferred back to her home school. First, I have to say the meeting was delightful and they were very accommodating, but (and there’s always a but lately) they needed documentation to shorten her day because the letter from the Amplified Pain doctor said she needed to be in school. I didn’t think it would be a problem since she’s been home bound the past four months. Unfortunately, it was. They wouldn’t help us write the letter. They feel that their patients need to go to school no matter what and that they can’t use pain as an excuse. I get that but our situation is a little more complicated.
As the month went on, I started to realize that the team of doctors that would be making decisions for our daughter, didn’t really understand the complexity of our issues. Once it was called Amplified Pain, everything was placed in a box with a bow on it labeled “pain.” Rosie was supposed to suck it up and push through no matter what happened. Unfortunately, when you’re spitting up blood, you can’t just keep going. Think about it. When you cut your finger and bleed it’s painful, right? My child spit up over 24 ounces of blood on Christmas Eve. Her chest hurt and she was weak from blood loss. We had to make a trip to the ER. There was no possible way for her to just push through. As my child was crying that “no one was going to help find out why she’s bleeding and no one cares” I made a decision. Amplified pain treatment had to go on the back burner. The blood has to be our top priority.
As for school, we got the letters to reduce her day. Both our pediatrician and her psychologist feel that it’s in her best interest and it is. She has to be able to make it through a school day and have enough energy to do homework and all the exercises she needs to do to get healthy. And, she has to feel like she’s being set up for success. She has to feel like she can do it. As a parent, I know my child well and have to fight to do what’s in her best interest. I respect all of our doctors but at the end of the day, I have to figure out the parts of treatment and recommendations that are going to work for Rosie. That’s my job.
I’ve written before about the importance of advocating for your child and this past year’s been an entire year devoted to it. I’ve fought school. I’ve fought doctors. I’ve fought the insurance company. Some days, I feel like I’m fighting with everyone but honestly, when it comes to having a chronically ill kid, you have to. You also have to teach them how to fight for themselves. At fifteen, Rosie is getting her own voice and it’s time that she step up and tell everyone what’s best for her and what will work. After a couple of long years of being sick, she’s pretty self-aware. I’m happy to have her back in school to be around other kids and to communicate with her teachers herself. It will be an amazing skill to master.
I also couldn’t be more proud of my child right now. Last semester was rough. After yearning to go to high school full-time, she only made it to 5 or 6 days before her blood pressure got so high she had to stop. It was such a disappointment. It was also incredibly hard to read and concentrate with Vestibular Disturbance from her concussion. Yet, she wound up with straight A’s in her classes and we have a plan to stay on track so she’ll still be graduating on time. I can’t begin to tell you what a monumental achievement this is. Many chronically ill kids fall behind or they get poor grades because they can’t attend class. I’m not going to say it was easy but she did it and it’s a testament to her drive and dedication.
Going back to school won’t be easy either. As we learned today, you can’t go to school if you’re spitting up blood but since we dealt with it last year in middle school, we know how it works. If Rosie makes it to school 2 or 3 days a week, it’s a success and it’s so much more rewarding than being around other sick kids at the tutor or sitting on the couch. Getting her out of here, even if it’s part-time will be huge for her. I can’t wait for big things to happen.
It’s interesting. A year ago, I was in the same place. We were trying to get Rosie back in school and make it work. However, I’m a totally different person than I was a year ago. I was just learning for the first time to stop apologizing for missing school and dance and having a different life than everyone else. I had finally come to the understanding that we were the ones inconvenienced, not the other way around. Sitting here a year later, I feel that even more so. I not only feel that my child deserves to have the same education as her healthy counterparts, I think she’s proven that she deserves it by her attitude and performance. I also feel like we deserve to have answers and have doctors in our corner and we’ve been blessed to get a new pediatrician that thinks so too. I feel like we have some strong people on our team that know and care about us and that really helps.
It also helps to know that we have so many people out their pulling for us every day. It makes all the things that are so hard a little easier. Over the past month, we’ve had phone calls, visits and lots of craft supplies arrive at our home. Rosie’s received gifts in the mail and dropped on our porch. While I initially shied away from the attention, I have to tell you it was nice to have it to get through the holidays. No one wants to spend Christmas in the hospital and we almost did (once again for the second year in a row). It was amazing to know that so many people care. Especially since we’ve lost others in our lives that we thought did but really didn’t. Thank you to everyone for making our holidays special.
When I get frustrated about how hard it is to get things moving in the right direction or getting closer to answers, I have to remind myself of how lucky we are. We are surrounded by people who love us. We’ve been able to stay connected through the power of social media. We’re both fighters, optimistic and there’s no way we’re backing down. And, we’re getting ready to go celebrate surviving the past year with a trip to Disney so we’re pumped.