Special Needs Parenting and Depression: It's Normal

As with many fibromyalgia sufferers I know, I've battled depression and anxiety for years. I've been on and off of various medication to help battle the depression symptoms, but there are some things medication just can't fix. There are some things that need counseling, and there are some things that you simply have to manage on your own. Being a special needs mom has really put things into perspective, and learning that some of the depression I feel is normal has been a huge help in my ability to manage it.

Jaxson on his first day of Kindergarten 2018

If you haven't yet checked out Jaxson's blog or FB page, I'll give you a quick synopsis of what Jaxson has undergone over the last 6 years. He spent his first 45 days of life in the NICU and underwent his first surgery for a feeding tube at 5 weeks old. We had no idea he had a syndrome at this point, all testing had come back negative or inconclusive. Over the first 3.5 years of his life, he underwent 12 surgeries. Three reconstructive skull surgeries, brain surgery for hydrocephalus, cleft palate repair, tethered spine surgery, several sets of ear tubes, a heart cath and 2 open-heart surgeries. We almost lost him a few times, the most terrifying was after his heart cath caused a severe leak, which resulted in emergency mechanical valve placement. He coded twice before the surgery, was inpatient for 3 weeks, and will take Coumadin for the rest of his life. He sees the following specialties: Complex Healthcare, Physical Medicine, Hematology, Cardiology, ENT, Plastic surgery, Neurology, Neurosurgery, pulmonary, dermatology, immunology, dental and eye clinics, plus has an endocrinologist and GI specialist available for consultation. He receives physical, occupational, speech and feeding therapies.

All of that said, Jaxson is actually doing very well right now. My depression problem isn't solely him. He does have at least 2 surgeries needed in the next year, the first will be in November, and he has imaging and other things that could be popping up. But if you saw him on the street, you'd never, ever know. He walks, he talks, he runs, he jumps, he's ornery, he's opinionated and he's the rottenest little monkey on the planet! He makes my days brighter, especially when we have 5 days of gray Ohio skies to contend with.

Still, there's always the thoughts that creep in. We watch other kids' journey's on Facebook so we can support the Kabuki community through prayer and messages, the whole community does. When a Kabuki child is lost, we all feel it pierce our hearts. No, it's not the same as if it were our own child, but we still feel the pain. Because we don't know what tomorrow holds for our own children. Personally, I watch the older kids a lot. I like to see their progress, it always gives me hope for Jaxson's future. But with those progress posts, there are also others. Older kids who are still facing a long road of surgery, maybe an organ transplant or a failing organ that isn't quite ready for transplant. Maybe it's an autoimmune disorder, which is common as Kabuki kids age, or maybe it's simply a crappy immune system that keeps them down. No matter what it is, this aspect of Kabuki makes life seem daunting, as if there is no end to the pain and suffering our children must endure. And yes, it's depressing.

One thing we have to remember as special needs parents, though, is that it's NORMAL to have these thoughts and feelings. It's NORMAL to have some depression over your child's situation. It's NORMAL to wonder what your child's future will be like. You're going to have good days and bad days, just like everyone else, except your bad days might be just a little bit (or a lot) harder. Understanding that this is a normal part of being a special needs parent has really helped me manage my depression. Knowing that it's okay to have bad moments, days and sometimes weeks or months depending on the situation really helps.

Jeffrey on his first day of school 2018

For me, depression not only makes me sad and unmotivated, but it also can cause a flare. Whether it be pain, irritation, mood swings, gut issues, off-the-wall anxiety or a combination of these, that flare will eventually lead to difficulty. Insurmountable pain that nothing relieves will show up on some part of my body (typically around the shoulders/neck or hips), and I have to make a decision. I know I'm not injured, but God it hurts! Do I lay around and melt into the couch all day? Or do I get up, pull up my big girl panties, and continue on as if nothing is wrong? If you know me, you know it's the latter. I don't have time to lay around, I have two kids who need me to take them to school, pick them up, attend functions and events, make it to appointments, be present at teacher conferences, feed them, give them their meds and make sure their homework is done. My husband works 40+ hours a week, every week, so my goal is to make sure he doesn't have to do a whole lot of running when he does get home.

I don't have time for pain. Certainly not the kind that lays me out.

What I'm getting at is this, if you suffer from fibromyalgia and/or depression and you are the parent of a special needs child, you MUST accept the fact that some of the depression you experience is completely normal and not related to anything else! Honestly, I attribute that acceptance to my ability to fight through the depression that comes, and reduced flares during stressful situations. It's OKAY to have a break down. It's OKAY to scream and yell. It's OKAY to be sad that your child is suffering. It's OKAY to be angry at the world. It's OKAY to not be okay! Just let it be temporary, because the more we care about our own mental health and well-being, the better we are able to advocate and care for our special children.

Depression is not something I take lightly. None of what I wrote is intended to undermine anyone's feelings or where they might be in their journey. I am simply sharing something I learned that helped me. I am not a doctor, nor do I claim that these statements will be 100% effective for anyone else. But for your mental health, don't you think it's worth a shot? Accepting your life situation for what it is, is truly freeing. It doesn't stop the feelings from coming, but it certainly makes it easier to overcome. At least, it did for me. Try to remember that what works for one person might not work for someone else, but also know that acceptance takes time.

Please feel free to comment below or ask questions about anything written on any post. I am happy to clarify things that seem murky because I failed to explain them properly! I'm still searching for my voice, but I feel like it's starting to come together, so hopefully I can start reaching the audience that needs this the most! Your support is very much appreciated!

"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." ~Unknown