I don't know how many of you have children with multiple physical and mental issues, but it's hard. I mean, HARD! As a parent, one thing you most want for your children is for them to be successful in whatever they want to do... whether it's to be a stay-at-home mom, a garbage collector, a doctor, or anything else.
She did so much to become all she could as she was growing up... All those years of trotting around to lessons and sporting events and after-school activities... All those years of Science fair projects and research papers and practicing math facts... All those years of teaching manners and work ethic and compassion for others... Sometimes I feel like all of that was for nothing because of the diseases and conditions and syndromes that my almost 21-year-old has to deal with.
Last semester her physical and mental health issues caused her to have to drop out of college and take incompletes for 3 of her classes (she was able to finish 2 through a lot of pushing through). She now has about a week to make up the work that she missed in those classes in order to change the incompletes to credits or they will turn into F's.
She worked so very hard last semester to try to get everything done but her own body and mind became her worst enemy. It just wasn't possible to push through and do everything needed in time.
So she took the incompletes, knowing that a couple of months to focus on her health and it would be no problem to finish these 3 classes when she was already so close... right???
Just as she was starting to recover from all of the trauma and stress of last semester and was again able to focus on getting into various specialists (which always takes a while), the world stopped. She had made several appointments but then she only got into one before doctors' offices closed for anything except for emergencies or COVID related cases.
Even without the doctors' appointments and treatments being done, at least she could go on and get in touch with her professors and start her work, right? NOPE! About the time she planned to do that, the college shut down. The professors were scrambling to switch to online learning for their current students so she felt bad about bothering them to help her get started on her classes.
At this point, she had plenty of time to finish so it wasn't a big deal. But as the deadline loomed closer and closer, stress about finishing set in and exacerbated her symptoms. This was heightened by stress about COVID-19, both because she is high risk and because she can't work.
As a parent of a child with an invisible illness, I often get "advice" on how I should be pulling back and letting her take care of her life on her own. "She's smart and she's 20 years old now," they would say, having no idea how hard it can be just for her to get out of bed each day or take a shower without almost passing out. They see her on good days and so, for them, she should be able to be doing these kinds of things on her own by now.
But what the advice-givers don't understand is that ongoing struggle. They haven't seen her cry because it hurt to get dressed. They haven't seen her try to study (and she really is smart) where she would read the same paragraph over and over and not be able to retain the information.
So this is my dilemma in all of this... How much do I push her to finish? How much do I let her do it on her own, knowing that the consequences could be failing those classes and ultimately not finishing school (because she's already struggling so much, any issue like having to make up these classes, could be too much)?
I've been walking this tightrope for a few weeks now and finally really talked to her about it last week. She said she did want to finish and I and some of her friends said they would help her in any way we could.
So I had hope that at least this chapter of her life would be okay... until she was in so much pain that she again missed a virtual voice lesson earlier this week. I was devastated... and so mad.
Your first thought might be that I was upset and mad at her. I'm not. I'm so f'n mad at these diseases that are robbing my beautiful, talented, smart daughter out of living the life she should be able to that sometimes I can't see straight.
I don't know what to do with these feelings. It's not going to change. She has been able to see a couple more doctors virtually the past couple of weeks, as offices are switching to that format, but there are still no answers. The more I learn about her conditions, the more I realize that she will probably have to deal with chronic pain and mental health issues her entire life. There are no cures. There isn't even an effective treatment for most of the issues she deals with.
The best we can hope for is a reduction in pain, a reduction in depression and anxiety, a reduction in the symptoms that keep her from living life.
Now she's at less than a week. I'm worried she won't finish, but I can't do it for her. Once again, it's time for the Serenity Prayer...
"God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."
Boy, do I relate! Just found your blog. There is nothing more excruciating than watching your child in pain. God bless you! My son, now 20, had chronic Lyme disease from age 10-17. At 17 he was also diagnosed with Anklyosing Spondylitis. My 13 year old was diagnosed with high functioning autism ( think Aspergers), along with six other conditions including depression & anxiety at age 11. Recently, she was diagnosed with Hypermobility Joint Syndrome & Myofascial Pain Syndrome. Thank you for your very honest post. I feel less lonely.ReplyDelete
I'm so sorry. I had no idea you commented. I know it's almost a year later but I hope you are making it. I know it's not easy (at least it hasn't been for me) but we need to keep going... Somehow.Delete