I was never a very healthy child and doctors just couldn’t figure out what was “wrong”. As a baby and toddler, I was often ill and labeled “Failure To Thrive”, even though my mum was doing everything she could. When I was 7 years old, I went in for my first surgery. I had “hammer toes” and I needed tendon releases on both legs, in hopes that it would help my feet straighten out. It helped to a certain extent, but I still had lots of problems walking or my legs would get very tired easily. By 8 or 9 years old, I was often sick, tired, and had awful migraines or headaches that would make me feel terrible. Doctors just couldn’t find a problem.
My second surgery was a routine tonsillectomy and adenoid removal because of my constant strep throats and illnesses. Things seemed to be getting slightly better at that point.
Then, I was 10, had a virus for about 2 weeks and woke up one morning paralyzed in both legs! I remember trying to get out of bed and I fell to the ground because my legs crumpled underneath me. It was so scary…. I called for my mum and I was rushed to the Children’s Hospital of Philadelphia where I stayed for quite some time, while doctors performed every test imaginable. Even with some of the best doctors and specialists in the country, we still had no answers. It was a mystery why a small child would suddenly be paralyzed.
After months of rehab and appointments, I slowly recovered and I could walk again with the use of braces and shoe inserts! However, my legs remained weak and were slightly atrophied (muscle was disappearing from my calf area). I would often come down with strange illnesses and I would get sick very very easily.
Then, one of the strangest things occurred when I was about 14 years old. I began getting horrible strep throats and infections again and they determined that my tonsils had grown back! Yes, GROWN BACK! So, 7 years after my previous tonsillectomy, I had to have my tonsils removed again! Sheesh!
Once I had the tonsils removed (again!), I showed signs of improvement, but still had pain, headaches and horrible fatigue.
Then, the worst year of my life began January 2000. I began to have horrific pain in the backs of my legs and it took three days before anyone would admit me into the hospital (after calling 911!) Once I was admitted, things took a turn for the worst and I was suddenly paralyzed again and in the absolute worst pain of my entire life. The only way I can even come close to explaining the pain was it was like a chainsaw cutting through both of my legs. Horrible.
Even though I had been paralyzed before, this time was worse and no one expected that I would walk again. I was at the Hospital of the University of Pennsylvania for a very long time in their Neurology ward. I had some of the most renowned doctors in the world working with me and they were working diligently, trying to figure out what was going on. After many many tests, the only conclusive result was Spinal Meningitis. However, even though I was positive for Meningitis, it still didn’t explain the paralysis and the other issues I was having.
When I was finally released from the hospital, I spent many many weeks in an inpatient rehab hospital where I spent 8 hours a day doing intensive therapy. So, while all my friends were in college, here I was, working my butt off in a hospital, just trying to survive and hopefully walk again. It sucked. No other way to put it.
I don’t often show pictures of me in my leg braces because I am very self conscious of them and I hate how skinny and “deformed” my legs look. I have learned the art of cropping photos to hide my legs and my brace and Garrett has also learned how to take photos of me so that you can’t see my legs. I think it is about time to show another picture of my legs, right? Might as well embrace them because they aren’t going away!
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| I am wearing one of my braces in this picture. Can barely even tell, right? I need to get over it! |
(Proud Moment Alert!) Even after all of that, I ended up graduating college with honors with TWO bachelor’s degrees. Yay! AND I graduated one year earlier than I was expected to!
After all of this, Garrett and I started dating (we had been friends for years prior to this), I graduated college, we moved across the country, I went from being in a wheelchair to walking with the use of leg braces!, moved back across the country again, started our little family, and things have been great.
Hayley
Hayley Crouse is a wife, mother and multifaceted designer. Her love of sewing, crafting, cooking and interior design infuses her daily life and naturally spills over into her online presence. She pushes the envelope of her creativity and hopes that others will be inspired to do the same. She currently authors the Welcome to the Mouse House Blog, is the pattern designer behind Mouse House Creations and is a collaborative designer with Willow & Co. Patterns.
Latest posts by Hayley (see all)
- Music Room: Home Tour - January 11, 2019
- The Ace Cardigan - July 30, 2018
- Susie Halter Top and Shorts: Project Run and Play - July 18, 2018
Praying for you girl! You are a tough cookie!!
Thanks for sharing! Seriously, I respect that so much!!
Oh Hayley….I didn’t know even a fraction of all of this but I have just one thing to say about it: YOU ARE BEAUTIFUL TOP TO BOTTOM, LEFT TO RIGHT!!!! There is nothing wrong with your legs, there is nothing wrong with your braces, and certainly there is everything right with your positive attitude! We share another thing in common that I didn’t realize….when I was about 5 years old I woke up one morning paralized from the waist down. I also fell out of bed wondering what was happening and my mom rushed me to the hospital. Within a day it turned from not being able to feel my legs into excruciating pain that I couldn’t bare. I was so scared. The doctors had no answers whatsoever and I still to this day have no idea what happened. Within a few days I had all my movement and feeling back.
Stay strong and let me know if there is anything you need or if you ever just want to vent. Also, ifyou need help getting orders out I would be more than happy to pitch in! I love me some crafty time!!!!
:0)
I love your face! And your legs and braces. You should bedazzle those puppies. Think of the ruffles and flowers you could be sporting! Seriously, you are a strong woman. To achieve all you have and take on all that you do with all that you have overcome and continue to fight each day. Just wow. So impressed and inspired. Thank you for sharing your story.
Also, is that spaghetti squash? I’ve got one to cook up tomorrow and it’s my first time. That looks really good. While I’m too much a carnivore to become a vegetarian I’m excited to see the recipes you share.
Thank you so much for sharing your story…. I found your blog a while ago- always wondered how you did everything you did-NOW I REALLY WONDER how you do what you do. You are such a good mom, housekeeper, wife, etc….. hope you get the answers you are looking for. Prayers your way.
Amy Wolff
Wow you are a super woman! I agree with Rebecca you should bling out your braces. 😉 There is nothing wrong with your legs or having to wear braces. You are perfect just the way you are. You and the family are in our thoughts and prayers. I don’t think I will be making a meatless menu swap anytime soon but I do like to have a couple meals in the week that are meatless so I am looking forward to your recipes. Praying you find answers and comfort! 😉
I just have to say I am overwhelmed with the responses and comments on here. They are so nice and so meaningful. I am a very lucky person to have such caring people in my life. Thank you so much
Hi Hayley,
I have recently started following your blog. I think I found you through Babycenter June 2007 as we both have kids born then.
Just wanted to say what an inspiration you are… in your positive attitude and your beautiful creations.
I wish you the best and look forward to a time when you can get back to your Etsy shop as I was just drooling over some of the things I saw there. 🙂
Sarah
Hi Sarah, I only just saw your comment, so I apologize for not getting back to you sooner. Thanks for following my blog and thank you so much for the lovely comment!
Hayley,
I found your blog through baby center also.
Funnily enough we have some things in common.
I too have a son with autism, november 2008.
And, I had a mysterious disease that took years to diagnose.
After much suffering it was determined that I have Celiac Disease. Following the GF diet “cured” symptoms that I wasn’t even reporting to my doctors because I thought they were due to stress and aging.
I hope you have been tested for celiac, it’s a total body disease that attacks everyone differently, It is an autoimmune cousin to sjorgen and lupus.
Best Wishes for you and your family.
I love and admire your attitude.
Saw the picture first and didn’t even notice anything amiss. You look like a happy, healthy girl to me. Hope you discover very soon what it is that’s making you feel unwell and recover quickly. Good luck.
Hi,
This is a very late comment to this post! I voted for you over on project run and play today and then clicked on your blog, originally to see more photos of your beautiful dress. At the end of that post, I clicked on one of the ‘you may like’ photos…which was Ainsley’s first birthday. And then I was hooked. When I got to Ethan’s 4th birthday and realised he was autistic, it made me want to read even more, so I clicked on ‘about us’ and read the story of your illness. I just wanted to say what a beautiful family you have, and such a gorgeous blog! I am becoming a follower. I have cancer of the brain and I am battling through it at the moment (radio and chemo) and it took me about 3 years to be diagnosed so I know what it’s like feeling like something is really wrong but nobody seems to know what. I can’t have children because of all the treatment, so I hope you don’t mind if I share in your beautiful son and daughter by looking at their photos 🙂 and lastly – WELL DONE on PR&P!
Hi, just read your post. I am so sorry to hear this is happening to you. Hopefully this late date of a comment finds you feeling better. Just a question and please forgive me for being stupid if this offends you but have you ever been tested for Lymes Disease? A lot of the symptoms you describe sound very like that and from my understanding A LOT of doctors really poo poo the diagnosis but it has been around for decades. I know a couple of people up where I live in Canada that have finally been diagnosed after years and years of misdiagnosis for various things including MS and other neurologic disorders. Anyway just a thought on my part and again very sorry if I’m speaking out of turn. You look beautiful braces or not!
Wow. That is a lot to go through. That k you for sharing. It was brave of you to do so. And I mean that sincerely, not in that sarcastic backhanded way some women say it. You are a beautiful woman. Who you are and what happen to you are all what make you into you. You should never hide or be ashamed of that.
You are beautiful. You are blessed in so many ways. The fact that you have shared this story may in fact help others who, for whatever reason, feel self-conscious about one physical thing or another. Don’t hide that light under a bushel, girl!!!
You are beautiful. You are blessed in so many ways. The fact that you have shared this story may in fact help others who, for whatever reason, feel self-conscious about one physical thing or another. Don’t hide that light under a bushel, girl!!!
You are beautiful. You are blessed in so many ways. The fact that you have shared this story may in fact help others who, for whatever reason, feel self-conscious about one physical thing or another. Don’t hide that light under a bushel, girl!!!
You are beautiful. You are blessed in so many ways. The fact that you have shared this story may in fact help others who, for whatever reason, feel self-conscious about one physical thing or another. Don’t hide that light under a bushel, girl!!!
You are beautiful. You are blessed in so many ways. The fact that you have shared this story may in fact help others who, for whatever reason, feel self-conscious about one physical thing or another. Don’t hide that light under a bushel, girl!!!
Just read this post, via your About-page, and was wondering how you are doing now? You really have been through a lot… One wouldn’t expect that when reading your lovely blog & seeing your great creations!
Thank you so much Nienke…. I am doing really well right now. Still have some issues medically speaking, but I seem to have a handle on it all. You are so sweet!!
Thank you for telling us about your illness and showing us your photos. Very courageous of you. I think that people who visit this site are more interested in what you are wearing than what your legs look like, so after a cursory glance they won’t be bothered, so neither should you be. Carry on wearing those skirts and dresses- you are very pretty and have a great figure!