You probably don't remember me, but I will remember you for a while. You were waiting at the bottom of the stairs while your daughter made her way slowly downward. You rolled your eyes, gave a heave of desperation, and looked my way. There I was, a quick answer to "how do I get her to listen?" ​I realize you probably didn't think twice about what you said and simply moved on with your day. I realize we as parents all say flippant things to our kids when we're in a rush. Maybe you were stressed or in a hurry or just tired of waiting. Maybe you thought I would find it amusing and share in a friendly smile and agree with you, tell her you're right. However, you should know that I had a long discussion with MY kids about how your words made me feel.

"Stop that, or you're going to end up with bandages on your legs like that poor lady!" 

To be honest, I didn't quite know what to say, so I just awkwardly nodded and hurried up out the door. My family waited for me in the car, kids screeching out the window about how my husband had drenched them with water at the playground. As I settled into my seat, a thought occurred to me: I am not some poor lady!

I have a genetic connective tissue disorder called Ehlers Danlos Syndrome. My particular type of EDS causes severe joint laxity, which means my ligaments don't hold my joints together as well as yours. You've probably never dislocated a shoulder or an ankle before, nor have you had to have physical therapists painfully push 19 vertebrae back into place because you fell down one day, or catch you as you lose the ability to stand due. You probably haven't lost the ability to move your body or speak because of seizures. I'm glad you haven't...it's incredibly painful and terrifying. 

You see, without strong muscles, my joints depend on defective ligaments and end up slipping out of place. If you, like me, also had tethered cord syndrome, you would have lost some capacity for your muscles to even receive signal from the brain, making it even harder to keep everything in place. I constantly feel like I'm falling apart. Thank goodness I have an incredible team of physical therapists who put me back together every week, teach me exercises that I can do to slowly and carefully strengthen different muscle groups, allowing me to stay more stable and be more active. Thanks to one very knowledgable physical therapist, I connected with a surgeon who detethered my spinal cord and restored my ability to exercise effectively again. With exercise, for me, comes hope.

Unfortunately, while I build those muscles back up, I need some help. You didn't see my shoulders, but I have "bandages" there too. My physical therapist uses a strong tape to hold major joints in place, like those you see on my knees; the tape you referred to when you told your daughter to stop hopping down the stairs; the tape that made you refer to me as "that poor lady" without even asking me for my name. 

My name is Kelsey, and I am NOT some poor lady. I am strong, resilient, determined, loved, and fighting every day to live my life to the greatest extent possible. A few months ago, I feared I would lose the ability to walk. Today, I'm attending local fairs and watching my kids learn to roller blade. I'm slowly gaining back my confidence and relying on amazing medical professionals who can help me get my life back. I hope you read this someday and remember that those of us who require braces, or wheelchairs, or tape to enjoy life aren't to be pitied. We might just have some really inspirational stories to share with your daughter. Please ask.

It's a cliché. I speak in clichés more now than in my collective decades on this planet. I've felt a strange love of life, hope for the future, a crescendo of emotion as I sat in a wheelchair and watched my husband and three children at the aquarium. Years of teaching and caring for other people's children presented me with a myriad of delightful experiences. Seeing the wonder in a child's eyes is truly an ordinary thing that makes life extraordinary.

My husband and I brought my three children home over the course of four months last year. Three siblings brought into our lives through foster care adoption. It was messy and awkward, breathtaking and uniquely us. I look back on those first few moments together and think how much I used my teacher voice! It wasn't until a nanny at the playground commented, "You must be a mom. I can tell by how relaxed you are with them," that I thought maybe I had grown into my parental role. 

And then things got harder. 

This time, my pelvic pain wasn't the problem. It started with severe headaches that had increased after taking fertility drugs in 2014, then periods of aphasia that became increasingly common. One afternoon, I sat in my physical therapist's office and couldn't move my body. My eyes widened, tears appeared and rolled down my cheeks, and all I could do was utter the word, "Weird." 

I couldn't move. The room began to spin and I lost all sense of my body. I collapsed into several arms and began to shake. 

Life is messy. 

​I was eventually diagnosed with a condition called tethered cord syndrome. Tethered cord is a rare condition where the spinal cord becomes abnormally attached to the base of the spine, in my case by a ligament. It should float through the spinal fluid as you move your spine, floating up and down as needed. Mine couldn’t, so it pulled and stretched, tugging my brain stem into my spinal column. This caused a wide range of neurological symptoms and pain.  
 
My son moved in the week after I started donning a neck brace, and I had invasive spinal cord surgery a week before my youngest daughter's fourth birthday. Our first Thanksgiving and Christmas were marred by my disease, and this time I didn't really understand what was happening to me. I have never been so terrified. I longed for the days when I was healthy enough to sew, my one therapeutic activity and source of calm. The worst part was that I began to criticize and blame myself. What business did I have being a mom if I couldn’t run and jump and wrestle with my kids? 

The darkest moment was when my neurosurgeon checked my legs for a good five minutes, then nodded somberly and admitted that I was showing signs of spinal cord signal loss. I couldn't afford to postpone surgery. Through it all, however, I've learned a few things that I will carry into the future. 

Never take people for granted. My husband, my children, my family, my friends, my doctors, my community...I'm a critical person at times. Having lived through this experience, I am humbled and striving every day to step back, observe, react with patience, and thank often. 

Every part of my body is connected. 
As my tethered cord syndrome worsened, I lost control of my bladder. I stopped feeling when my bladder was full. I also lost feeling of pain in my pelvis. My endometriosis/adenomyosis pain diminished. My period shortened to just two days of medium to light flow per month. I bounced between feelings of relief, confusion, and worry that something was seriously wrong with me. In the four months since my spinal cord surgery, my period has returned in full force. I’m back to four days of deep cramping, heavy bleeding, and clotting. My disease didn’t get better. Like the rest of the muscles in my lower body, my uterus is getting stronger again, and I can feel it.
 
I deserve to be a parent.
I can be extremely self critical. Unfortunately, it wasn’t just me. There were others who judged me, made me feel like less of a parent. Is it really important that I play basketball with my son, or can I show him the same kind of love and attention when I teach him how to sew a felt toy together? What do children really need? Food, shelter, security, love. I can give all of that, and so much more. I can't throw my children around in the pool, but I can sit in my lawn chair, laughing and cheering as they speed down the slide 'n slide in our backyard. I can play board games and read to them every night. My children understand that people come in all different shapes, sizes, and abilities. My children are learning compassion, understanding, patience, and the beauty of diversity. They know that just because their mom can’t walk for three hours doesn’t mean she can’t enjoy a museum. She needs a wheelchair, that’s all. That's a lesson many people won't appreciate until someone in their life is touched by disability or age. Most of all, I’m there. I’ve been with them every single day since they moved in. I’m there in the middle of the night when they have nightmares, and there to see them get off the bus. They call me a picture ninja because I take photographs of them doing everything. They know they are loved and cared for. That’s really all that matters.
 
Life is a miracle. A very messy miracle.
Before my surgery, my life was not much fun. I couldn’t do most of the things I enjoy. I couldn’t volunteer at my children’s schools, couldn’t sew, couldn’t write, and was fairly irritable. I suffered seizures and intense headaches. Because of my Ehlers Danlos Syndrome, a genetic connective tissue disorder, I frequently partially dislocate (sublux) or completely dislocate most joints in my body. As I lost muscle control, I subluxed more often, causing widespread joint pain. After my surgery, I am able to slowly get back to the things I enjoy. Each step forward is a marvel after fearing the loss of my ability to walk. I’ve been seizure-free since my surgery. I no longer have intense headaches. My pain is slowly, very slowly, improving. I still have to be careful about my body mechanics and make sure I get enough rest, but even so…I’m enjoying life again.
 
This summer, my husband and I took my children to the aquarium. My husband pushed me in a wheelchair because I couldn’t tolerate walking for more than 15 minutes at a time. I sat in my wheelchair, several feet from where my children beamed, petting rays and sharks.
 
“Mommy, Mommy!! Look! It’s so slippery! Look, it’s coming over to me!”

I sat back. I’d been there before. The aquarium wasn’t new to me. I had been at least 10 times. I thought to myself, let my kids enjoy it, and I’ll just enjoy them. But then I thought, why not? Slowly rising from my chair, I carefully dipped my hands into the pool. As I watched the rays and sharks glide gently through the water and skim my hands with their backs, a sudden rush of emotion overcame me. Tears welled up in my eyes.
 
Life is beautiful. Life is a gift. I had never felt as grateful for my life as I did at that moment. For three years I suffered infertility, chronic pain, and an ache for motherhood. Once I became a mother, life wasn’t perfect. It was hard. Life kept pounding away. My pain nearly swallowed me whole, but I didn’t give up. I found doctors who could help me, who were knowledgeable in my rare disease, who didn’t give up on me, who pushed me to undergo major surgery and keep fighting. The fight I had battled with endometriosis gave me the tools to know that there were answers out there, and I had to find them.
 
Life isn’t perfect. We all have strife and pain and heartache. But if we find support and moments of joy and hope, we might just make it through. We might just find reasons to keep fighting. We might just find hope.