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Motherhood and TN

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MaryEllen’s Story

Here’s the thing about motherhood; in all honesty, being a mom is the hardest job you will ever have. Every mother wants to be able to look back with a sigh of relief and realize she raised a child who is happy, healthy, and makes a positive impact on the world. As a single mom, I’ve often said that no matter how my child turns out, there’s no one but me to take the credit, or conversely, to take the blame. Although there have been outside influences on my daughter, Hunter, such as her grandparents, aunts, and uncles, it is I who’ve raised her exclusively since she was about two years old. Yes, being a single mom presents a whole, new set of challenges, but being a single mom with a chronic illness presented hurdles I never thought I’d face.

Here’s the other thing about motherhood; it’s really, REALLY difficult to admit that it hasn’t gone as smoothly as you would’ve liked. I mean…after all…aren’t we as women made for motherhood? Shouldn’t this whole parenting thing be second nature to us? When I look back at some of the hardest times as a parent, they’ve been those situations that have been directly impacted by the fact that I have a chronic illness, namely, trigeminal neuralgia (TN). I already hate having to admit that my body doesn’t work as well as the next gal’s, so admitting that this crappy body has made it harder to be a parent really isn’t my cup of tea. It isn’t my cup of tea, but it absolutely is my reality.

As a mother living with chronic illness, I’ve had to abandon several of the benchmarks that I thought every good mother had to meet. I’ve abandoned the need to have a pristine household that could serve as a place for sleepovers at the drop of a hat. When the simple act of bending over puts you in excruciating pain, housekeeping no longer holds the same importance as it used to. I’ve also had to abandon the idea that I needed to be there for every, single achievement or activity in my daughter’s life. That’s a hard one, and, in all honesty, I’m still working on it. You see, I’ve always been the independent type who hated to ask for help. If my daughter needed to go to the dentist or doctor, it was important that I be the one to take her, wasn’t it? I mean, after all, I was the one who made the decision to lead a life as a single mom, so it was my responsibility to fulfill every role there was, and that should include wearing the titles of taker-to-all-appointments and mother-at-every-event. I shouldn’t have to rely on other people to get her here or there, right?

Sadly, life with TN was not going to make it easy. In fact, it was going to make it darn near impossible. There were days when simply opening my eyes was an accomplishment. When I was heavily medicated for my pain levels, there were days when I only left the couch to use the bathroom. I stopped eating because it hurt too much to chew. My diet consisted solely of bottled sports drinks which I would drink through a straw so I didn’t have to open my mouth too wide. I didn’t cook for days in a row, which meant that my daughter relied on other family members for meals or ate convenience foods that she, herself, could heat in the microwave. I stopped being able to go to every appointment or practice or recital, and the guilt was overwhelming. But, with all the negatives it brought, being a mom with a chronic illness also came with perks. These perks certainly weren’t anything I could see at surface-level, but only discovered after years of observation.

For many years, I couldn’t receive kisses from my sweet girl on one side of my face because it would trigger extreme pain episodes. Over time, she learned to ask before pecking me on the cheek or wait to see which cheek I leaned towards her, depending on which side was my “good side” that day. From this, she learned patience and to think before she acted.

I’ve always felt some small measure of relief from using heat therapy on my face, either from a heating pad, hot water bottle, or microwavable heat packs. When I was using the hot water bottle or the microwavable heat packs, they would need to be reheated intermittently. By helping me refresh my heat packs, Hunter learned responsibility and the importance of helping others when they needed to be comforted.

Although I kept up with my full-time job, the time I wasn’t at work was spent on the couch. Most of the time, I was feeling loopy from the mediations I was on. I slept a lot during that time, too. Hunter has always been a creative kid, and those times when I wasn’t fully, mentally available taught her the importance of being able to entertain herself and respect when someone is in need of quiet time.

I could go on and on with examples, but here’s the gist of it – through all these trials and tribulations when I was hating myself for not being the optimal mom and being fully present for my daughter, my struggle was teaching her important life skills that she may not have picked up on otherwise, or may have only picked up on later in life. Now, I could sit back and continually criticize myself and say that she missed out on some fun childhood experiences because she was taking care of me, but I’m not going to. Why? Because I’ve already spent years telling myself that and, frankly, I’ve moved past it. It wasn’t easy, but I’ve moved past it. Well, for the most part, anyway. I’ve moved past the “coulda, shoulda, woulda” phase into the acceptance phase. I have accepted that there is no such thing as a perfect parent or a perfect childhood. I’ve accepted that my daughter just happened to get stuck with a parent with trigeminal neuralgia. I’ve accepted that I did the best job of parenting that I could do with the cards I had been dealt.

Ironically, Hunter would be diagnosed with two chronic illnesses, herself, around the age of twelve. Since then, I’ve watched her handle her pain with more grace and maturity than I was often able to muster as an adult. I’ve sat back and watched her tell others about her diagnoses and what it’s like to feel different than her peers. I’ve watched her use a motorized scooter for the first time and get glares from shoppers who assumed she was just some young punk joyriding in them. I’ve seen her use a wheelchair for the first time on a class trip that required lots of walking. (We’ll save the story about how I accidentally pushed her in front of a bus in said wheelchair for another day.) I’ve seen her go from doctor to doctor trying to get someone to believe what she felt, and I’ve watched her visit numerous physical therapists.

Through all of it, I’ve watched her continue to have a positive attitude. I’ve seen her walk out of the doctor’s office in tears, yet crack a joke five minutes later. I’ve watched her continue to care about herself and others and believe that there are still good people in the world. I’ve watched her be resilient, and as a parent, resiliency is perhaps one of the best things we can hope to find in our child.

Despite all ups and downs of our relationship and the impact chronic illness has had on it, I am so proud of the young lady I am raising. She entered high school this year and has a good head on her shoulders. She is taking all honors classes and reads voraciously. She is kind and generous and simply a joy to be around. She is active in her community and volunteers with organizations that are close to her heart.

She has a great relationship with her extended family and maintains a close-knit group of friends. She is kind to animals and people of all backgrounds. In addition to that, she loves all Pittsburgh sports teams, which is definitely something to be proud of. All and all, this chronic illness and I haven’t done a bad job raising her.

At the age of 14, Hunter continues to battle Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). I’m just shy of 39 and still dealing with the pain of trigeminal neuralgia. I had brain surgery (microvascular decompression) and was pain-free for one year, but then the pain returned. I’ve been told I’m not a good candidate for gamma knife radiation therapy. I spent years on medicine, but for a little over two years now, I’ve only been using heat therapy, guided meditation, essential oils, and aromatherapy. I’m not sure how much longer I can go without another form of intervention, as my pain episodes are getting longer and more intense in frequency again. But, for now, I’m not on any medications.

Hunter and I like to get out as much as possible during the summer months. We’re active in our community and take advantage of local fairs, festivals, and farmer’s markets. We enjoy trying new restaurants and taking day trips. We try to cram as much activity into the warmer months as we can, knowing that the simple act of just leaving the house in the winter is pure torture for someone with TN.

In the winter months, I tend to feel down and frustrated with my lack of activity, but Hunter reminds me that she’d rather spend a quiet day at home with me being mentally present, than have me rely on so many medications for relief.

Thankfully, I think I can say that despite the fact her momma is living with the crippling pain of trigeminal neuralgia, my little girl has turned out just fine. The truth is, it really does take a village, as the old saying goes. I have had tremendous support from my family and I know I couldn’t have done it without them.

If you are a parent struggling with chronic illness, I encourage you to lean on those individuals in your circle of support. Perhaps, it’s your spouse or partner. Perhaps, it’s your extended family or a close group of friends. Perhaps, you’re reading this and realizing you don’t have a circle of support. In that case, it’s never too late to develop one. If you’re active in a church, talk to your pastor about ways the congregation can support you. If you’re in a parent group, ask if anyone else is dealing with similar issues. Consider starting your own support group for TN sufferers in your area, or any parents dealing with a painful illness. Finally, there are groups on social media who can offer long-distance support and encouragement. The important thing to remember is that, despite your chronic illness, or perhaps because of it, you can be a loving and effective parent who raises an amazing child. I know I have.