Parenting in general is so so very hard. Even when all parents and children are healthy and there are no significant physical, emotional, or mental challenges. Parenting children with special needs whether it’s a physical disability, learning disability, emotional difficulties, or all of the above is even more difficult. And then when you add in parents with chronic illnesses and/or disabilities the difficulties become even more magnified. Families like mine have a trifecta of intense challenges. And then now on top of all the usual challenges, we’re adding a year+ long pandemic.
Let me describe my life this week. Keeping in mind that as I write this, it’s only Tuesday. But first, some background: My son has been doing an amazing job this year training for both his high school track team and preparing for his first high school soccer tryouts. Because of Covid-19, indoor winter track was held outside this year – in the cold. And soccer tryouts which normally take place during the summer months, were delayed until this week. So in between learning how to manage his ADHD for this entire year during virtual learning, every day he has been running in the cold for miles, weightlifting in our garage, and practicing his soccer skills outside in the snow. He is so very dedicated. In fact he has been training so hard, that some kind of injury developed in his leg. Despite my best efforts at encouraging him to rest and to not be so hard on himself, his high anxiety levels and depression have convinced him that if he doesn’t keep up this intense regime, he has no chance of making his school soccer team.
My daughter will be starting middle school next year, and because of the pandemic she has not stepped foot into a school building for almost an entire calendar year. I am very concerned about her ability to thrive in middle school while coping with her severe ADHD and anxiety. So for the last several months we have been going through the process of getting her the appropriate evaluations and meetings so that she can be set up with an IEP (Individualized Education Plan) before next school year.
Adding to that all the other outside stressors – Covid-19 vaccines, an aging mother, work, me moving to a new office, and a myriad of other things. And then there’s all my medical issues constantly happening at the same time. Which brings me back to this week. Monday morning I drove 1 hour each way to my 2 hour Remicade infusion. A necessary routine every 4 weeks to keep me functional and one that I’m very grateful for. But that’s a total of 4 hours. Meanwhile on my way there, I had to schedule a doctor’s visit for my son. He needed to visit our PCP for his leg issues. My husband canceled some of his work meetings and was able to take him to that appointment during my infusion. I’m so thankful for him. Lots of gentle hugs to you single parents with chronic health issues!
Typically people advise to take it easy after an infusion. If only… After this infusion, I rushed home to take my laxatives in time for my scheduled colonscopy the following morning. And then took my son to the radiologist to get an X-ray to check for a possible stress fracture. Afterwards we attempted to go to the running store to get him more supportive running shoes. Sadly it was closed yesterday. So we came home, and I put my colonoscopy prep in the refrigerator. For the rest of the evening in between drinking my prep (so gross!), struggling with nausea and abdominal cramps, rushing to the bathroom, trying to mentally prepare for my daughter’s first IEP meeting next week, and returning client emails and texts, I tried to be a decent human to my kids and husband. It was a long long day, evening, and night for me. Instead of sleeping, I spent most of the night in the bathroom on the toilet rocking myself back and forth and trying not to also vomit. Keeping it real. Lol.
Then early this morning I got my daughter logged in for school, headed out with my husband for my colonoscopy, and hoped and prayed that my daughter would be engaged in her virtual learning at the appropriate times. Finally I came home and spent the rest of the day trying to be at least a semi-decent parent while recovering. Because patients can’t drive the same day as a colonoscopy, my husband had to drive my anxious son to his first high school soccer team tryouts. And I tried to give him a calming and loving pep talk before he left to help calm his nerves. Then after tryouts my husband took him to the running store to be assessed for his super expensive but medically necessary new sneakers. Have I mentioned before how expensive it is to have health issues?
Yep. All of that. And it’s only Tuesday afternoon. Last week was almost just as draining. Parenting kids with special needs while managing my own serious chronic illnesses is so very very hard.
And to be honest I often feel guilty. I feel guilty for all the things that fly under the radar because I’m struggling with my chronic pain and disability, on the phone with a doctor’s office, on hold with a pharmacy or health insurance company, frequently at doctors’ appointments, etc., etc. I feel guilty that I didn’t think about my son needing better running shoes. I feel guilty about forgetting to remind my daughter to take a shower. I feel guilty about not checking my kids’ grades. I feel guilty about hearing from teachers when my kids have missed an assignment. I feel guilty about my kids not being able to attend school in person 2 days a week like other kids in our area because I’m so high risk in this pandemic. I feel guilty about… SO. MANY. THINGS. Many moms struggle with intense guilt, and us moms with chronic illness struggle even more.
But in reality…
I’m doing the very best I can do. And that’s all that can be asked of anyone. And honestly most people look at me and see a parent who despite her own struggles loves her kids well. When I stop feeling overwhelmed by all the day-to-day stressors and step back to look at the big picture, my kids are really really great kids. Even with, and especially because of struggling with ADHD, anxiety, depression, and a mom with chronic illness. My son is definitely more isolated and depressed this year due to our family’s need to quarantine. But he is also so very dedicated to the things he’s passionate about. He does more than most kids around the house because of all the tasks I can no longer do. He very rarely complains. He’s kind and thoughtful in his own ADHD way. And this year with being home so much he’s developed a great love for cooking. At this point, he’s acutally pretty close to being our family’s go-to chef.
My daughter may not be getting the grades she’s used to getting during normal school times and is spending a lot of time in front of screens. But, she’s also participating every day in school mostly on her own. She’s passionate about advocating for the rights of those less privileged than her. She funny and creative. She has great artistic skills. And she cares about, accepts, and loves other people well.
And most importantly, I try my very best to be present with my kids and make sure they know how very loved they are. Growing up with their own special needs and having a parent with chronic illnesses and disabilities has taught my kids so many great things – compassion for others, resiliency, responsibility, sacrificing for the needs of other people, and so. much. more. Not only are they not worse off with me being their mom, I think in many ways they are better people for it.
So for those of you with chronic illness struggling to care for your kids: You are doing your very best. And I see you. I see you sitting in pain watching TV or playing board games with your kids. I see you struggling to keep your eyes open and still helping with homework, loading dishwashers, washing clothes, giving hugs, and so. much. more.
We are not super powered people or super heroes. We are not perfect people or perfect parents. We are tired and in pain and struggling. But also… We are enough. And our kids are enough.
Leave me a comment and tell me at least one thing you’re proud of as a parent with chronic illness.