For twelve years, we’ve been climbing a mountain we didn’t even have a name for. We’ve wrapped ankles, iced knees, and prayed through nights that felt endless. I’ve begged for answers, and this week, in a small exam room at Mayo Clinic, we finally got them.

They’re not easy answers.

But they’re the truth.

And with truth comes a plan, and with a plan comes hope.

Three. That was the first time she started complaining of pain. It started in her ankles. She had a podiatrist before kindergarten. We used to wrap her ankles in horse wrap from Fleet Farm, pink and purple. As time went on the pain progressed. She complained that her knees hurt. Her hips were sore. Then it was her back. We saw rheumatologists, orthopedics, physical therapy. She was hyper mobile. She had bad posture. Her gait was off when she walked. Her feet were flat. After a foot injury we had no explanation for, she spent a year in a boot. She had not one, but two foot surgeries. And we couldn’t find answers.

Last fall she played her first season of high school volleyball. The back pain kept getting worse and worse and she just kept pushing through. Then she got sick. What started as a sore throat knocked her down for weeks. She quit volleyball, missed most of the first term of her freshman year, and was sleeping most of the day. Her back pain was getting worse and worse. There were blood tests, X-rays, ER visits, rheumatology, talk of admitting her, and no one could figure it out. The pain continued. In the darkest moments of those days I saw my teenager defeated for the first time. I watched her get angry, I heard her yell, and at one point I almost couldn’t get her into the car for an appointment because “no one was ever going to be able to help her.”

If you know me, if you’ve followed our story, you know that we have been to hell and back in the last 6 years, and through it all there was nothing more heartbreaking than sitting beside her in those uncomfortable chairs and hearing her tell doctor after doctor that her pain level was an 8/10. Every single day. She wakes up and feels pain. She goes to bed in pain. Things that we do without even thinking about them are a struggle for her. Riding in the car, sitting through class, walking around the grocery store. And the fact that she does it with a smile on her face. That she works harder than anyone I know, that despite missing more school than her classmates she still gets A’s. That I’ll walk into her room to find her with her Bible and highlighters, that she has been told that she will probably never be pain free and she continues to get out of bed everyday and chooses to live her life to the fullest. I don’t know how she does it, but I’ve never been more proud, or more heartbroken. She is tired.

In addition to the pain she gets dizzy. Her head hurts. Light bothers her. She stands up and almost passes out. Showers make it worse. Getting sick makes it worse. And when that wasn’t enough she’s so flexible that if she’s not careful her shoulder completely pops out of place when she puts a shirt on. So we continued to fight.

We finally got into Mayo Clinic in June. They did every heart test possible, she had to do a tilt table test, we sat through patient education, came home with every little booklet they had in the pediatric department, and left feeling frustrated. They ruled a lot of things out, she was diagnosed with dysautonomia, and sent home with a prescription for physical therapy and told to eat more salt. They did order an MRI of her back to complete when we got home.

Her back pain took a turn for the worst after that appointment. She couldn’t sit through her sisters softball game. She would walk out of target in the middle of a shopping trip to sit in the car. She comes home from school and is in her bed with a heating pad. She did physical therapy twice a week for months and it made it worse. Her MRI did show some disc bulging and degenerative changes in her back. We saw ortho, they recommended a steroid injection, but no one could figure out the root cause of her pain. I wasn’t giving up. I was angry. And when I get angry, I get shit done. I kept pushing Mayo until they scheduled us with their orthopedic team and then we waited.

This week when we traveled to Minnesota for the second time for her, we expected to leave disappointed. We wanted their opinion on steroid injections. We were hoping for a pain management plan. We had no idea that in room 55 on the 16th floor, after 12 years of pain, 12 years of seeking answers, that we were about to get them. All at once.

The doctor came in, talked to us, examined her, and said I don’t think it’s her back. Wait, what? She said that she thought it would be beneficial for her to see the hip guy. They left us in the room while they left to what I assumed was to schedule us an appointment to come back at a later date. We were starving, had to pee, and were over it. Much to Maddy’s embarrassment I left the room to go to the desk and check on things. I asked if they could call us with an appointment time and the receptionist said oh no, he’s on his way down now. I’ve been here before. I knew that feeling. At that moment I knew that whatever he was going to say was a big deal.

Two minutes. That’s how long it took for him to introduce himself, to pull the xray up on the computer, and to change her life.

Maddy has hip dysplasia. Her hips didn’t develop correctly leaving her socket too shallow and not fully covering the head of her thigh bone. I’ll be really honest, having labs growing up, I only thought this happened in dogs. 🤦‍♀️But because they don’t cover the bone the way they’re supposed to her hips are unstable causing the muscles around them to tighten to stabilize which leads to muscle fatigue and spasms.

They also face the wrong way. Her hip sockets face the wrong way. Most people’s hip sockets tilt slightly forward so the top of the leg bone (the femoral head) can move freely inside. Hers tilt backwards. So every time she walks or bends, the ball of her hip bumps into the front rim of the socket instead of gliding smoothly. It’s like a door hinge installed backward: it still opens, but it scrapes and grinds every time. Because the bones keep colliding, the cartilage that cushions the joint (the labrum) has been pinched and shredded over time. That’s where the sharp, stabbing pain comes from the 8/10 pain that flares when she sits, stands, or turns her leg.

She most likely has femoroacetabular impingement (FAI) from a CAM deformity. Which means the tops of your femur are supposed to be a perfectly round ball that fits inside the joint and hers are not. This combination makes her hips collide from both sides of the joint, causing more pain and the feeling of her leg being stuck when she walks. There is also probably nerve involvement which is causing the sharp shooting pain down her leg.

And if that wasn’t enough, The top of her thigh bone is rotated. That rotation throws off how her knees and feet line up with her hips. It’s why she’s always walked a little differently. Her body has been twisting itself to make movement possible even though her joints don’t line up right.

The fact that she can walk, let alone play volleyball, is a miracle. It’s a testament to her strength and determination. It blows my mind. It also scares me to think about how vulnerable she was out on that court and that we are so lucky that she didn’t blow out her knee or ankle.

It’s all connected. Her back hurts because her pelvis is tilted. Her knees and ankles hurt because they’ve been compensating for her hips since she was a toddler. Even her flat feet and foot surgeries trace back to this. Her entire body has been adapting around a foundation that’s been off since birth.

Her options are not great. So much so that they immediately called their head surgeon who is in Japan for a conference despite it being the middle of the night there.

They want to do a PAO surgery. During the surgery they would break her hip in three spots and rotate it to where it needs to be. The recovery is awful. 6-12 months. Wheelchairs, crutches, a limp, and basically learning how to walk again, And once she heals they go in and do the other side. Because her femur is also rotated they are discussing fixing that at the same time. If her labrum is shredded they need to consider fixing that too. I was told yesterday that they need to sit down and come up with a surgical plan because they can’t do all of this right now, it’s too much surgery. We are going back in a few weeks to have more imagining and testing done to look at the cartilage and confirm the labrum tear. They will also be doing an injection for pain. Surgery will not be until Spring because of all the things we need to do and because people travel from all over the world to see these guys to have this done.

We need to meet with the Ehlers Danlos Clinic because they suspect that she has that. It’s a connective tissue disorder that explains the loose joints, the popping the shoulder out, etc. It also makes this surgery more challenging.

They want us to sit down with the anesthesia team because of her dysautonomia.

She needs to start PT to strengthen her core, her backside, and her hamstrings in preparation for surgery.

The good news is that she has no signs of arthritis. This surgery could change her life. She has a chance at being pain free. And while we are so excited at the prospect of that, while we are so happy to finally have answers, I hate them. The thought of someone breaking my beautiful baby girls hips one at a time, makes me want to throw up. It wakes me up at night. I am angry that she has lived her life like this. I am sad that she has to deal with this. I am scared for this surgery. Scared for her recovery. I am tired.

This has been YEARS.

As Maddy has said, “we’re lowkey over it.” We are facing a giant mountain with blisters on our feet and a backpack full of rocks.

But as a wise person recently told me: “You can't control this. You can only manage it. Don’t let it eat you up.”

We are going to get through this. We have to.

Because the alternative? Saying no to this surgery? Looks like arthritis by 20. It’s 3-5 hip replacements in her life time, on each hip. That’s not the life I want for her and I refuse to let that happen. So we will continue to fight. And we’ve got this because God’s got this.

Isaiah 40:29–31 (NIV)

He gives strength to the weary and increases the power of the weak.

Even youths grow tired and weary, and young men stumble and fall;

but those who hope in the Lord will renew their strength.

They will soar on wings like eagles;

they will run and not grow weary,

they will walk and not be faint.❤️

Ehlers Danlos Syndrome

Hip Dysplasia

Dysautonomia

PAO