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The Princess and The Prosthetic

Marriage with a Special Needs Child

June 27, 2019 in Family, Love & Marriage - No Comments

By most accounts and statistics, our marriage should have deteriorated already.

A child with special needs?  A wife with a chronic disease?  A husband with career in one of the most stressful professions?

You would expect we would have failed.  In fact, the deck was stacked for us to fail.

But we didn’t.  And we haven’t.  And we won’t.

Between the blow of a diagnosis, to Callie’s amputation, to the daily maintenence I have for my diabetes, to simply managing life in a non-inclusive world for Callie–the stress and burden is overwhelming.  No wonder parents of special needs kids feel an overpowering amount of stress and strain–especially on their marriage.

This pressure hasn’t torn us apart. In fact, it’s done the opposite and has brought us even closer together.

When Callie was diagnosed with Tetrology of Fallot, it was each other we turned to.  It was his hand that I held through the entire 8 hour surgery and it was my arms he fell into after we would leave the NICU each day.

When Callie was wheeled back into surgery for her amputation, it was James that held me and let me collapse in pain.  It was me who reassured him that she would be ok and we could do this together no matter what obstacles would be put in our path.

When Callie had her latest open heart surgery, it was at my feet that James fell to on his knees.  It was my waist that he arms circled, holding onto for strength.  It was James who covered me with a blanket in the middle of the night when he woke up in the hospital room.  It was me that he would make sure had eaten, taken her insulin, and rested while our baby girl recovered in the bed next to us.

Beach

But the greatest gift Callie has given us is not how her special needs have drawn us together….but in how they have pitted us against the world. Our relationship has solidified in the adversity we’ve overcome.  Together. Everytime we held hands in the waiting room while Callie had a procedure.  Everytime he wiped tears from my face.  Everytime we navigated the insurance system.  Everytime we would work with Callie to take steps in her new prosthetics.  Everytime we would collapse at the end of an exhausting day.  Everytime he would make me laugh trying to lighten the mood in the doctor’s office.  Everytime we would do Callie’s therapy sessions with her.  Everytime Callie would hit a milestone.  Everytime we would overcome an obstacle.  At each of these times, I felt immensely grateful to have such an amazing partner in this struggle.

Marriage, a lot of the time, can be challenged by a special needs child.  Ours instead was lifted up and solidified.  It was us against the world and we would do everything in our power to create an incredible life for our little family.  The world might throw enourmous hurdles in our path but we would overcome each and every one.

With courage and kindness.

Together.

Beach2

 

 

Jaime

Hi everyone! Thanks so much for stopping by! My name is Jaime! Wife to my better half, James, who is my moon and all of my stars. We are parents to our little warrior princess, Callie Grace. We started this blog to share our journey as we navigate through our crazy beautiful life. Callie is a lower limb amputee and I am a Type One Diabetic. We are hoping to change the face of beauty one step at a time! We hope by sharing our story, you leave with a little bit more inspiration and hope! Thank you so much for stopping by and joining our tribe!

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About Me

About Me

Jaime

Hi Y'all! My name is Jaime and it's so nice to meet you! Welcome to The Princess & The Prosthetic! This brand is inspired by my daughter Callie who is a lower limb amputee. We're dedicated to inspiring others to embrace their own perfectly imperfect fairytale. We advocate for people with disabilities and hope to inspire everyone--regardless of ability--to love and accept themselves just they way they are! I am a story teller at heart and this blog is a virtual scrapbook of our crazy beautiful life. You're in the right place if you are a huge book nerd, drink coffee like your life depends on it, and run on dry shampoo and Amazon Prime. We live a semi-crunchy lifestyle but still love a good Texas BBQ. Inclusion is our love language. You can find us either on the archery range, at the stables, on a hiking trail, or walking our rescue dog, Jack! We are so grateful that you’ve found us—welcome to the fam. Read More

Jaime

If I do anything as a mother........
It will be to make sure she knows that she is loved beyond measure ✨️✨️✨️

#ksmomsday
Slice of life.....

Spring Potting

New Workout Space

Grounding + morning coffee + vitamin D

Puzzles + Coffee

Farming co-op pick up day

Life After Gluten 

25lb draw + 50 meters

ERG Mixer

Board of Directors meeting

Walks on walks
Sharing all the beautiful things that happen when you set (and hold!) a boundary!

#boundaries #boundariesarehealthy #toxicfamilymembers #toxicfamily ##toxicrelationship #toxicrelationshipsurvivor #relationshipadviceforwomen
SIXTEEN YEARS......

It's a lot of showing me what a mature love is...
Laughing so hard at your jokes, I pee my pants.
Making me feel gorgeous when I roll out of bed in your oversized academy tee and a messy bun. 

It's a lot of pushing me to be 1% better every day....
Believing in me when I have nothing left in the tank.
Couch dates, the space in-between my fingers that your hands always seem to be, and pulling me back to bed pleading for just five more minutes. 

It's a lot of when I doubt myself, you walking side by side with me through the darkness....and quietly pointing out the places I shine the brightest. 

It's a lot of choices, promises, commitment, and loyalty. It's a lot of stolen kisses, inside jokes, and catching your eyes on me from across the room. 

It's a lot of work. Long walks with the dog on Sunday. "I'll be late. I love you." texts. 

It's a lot of five page love letters in a world full of status updates, dream come trues, and waking up next to you. 

It's a lot of falling in love with each other's chaos. Conquering our demons and wearing our scars like wings. Unpacking childhood wounds, setting boundaries, and seeing each other for the perfectly imperfect humans that we are. 

It's a lot of sighs, eye rolls, heartaches, and comebacks. Wiping away tears and promising to try again.  Wanting to be close instead of wanting to be right. It's a lot of grace and forgiveness.  Healing and inner work.

It's a lot of figuring out if we're wild wrapped in fragile or fragile wrapped in wild when it comes to our love. Because in some ways, this feels so incredibly strong--unbreakable. In other ways, I want to fiercely protect this beautiful, delicate, amazing once in a lifetime thing at all costs from the world. You and me, baby. Always. 

And as we go to sleep tonight, my head tucked neatly into your shoulder....
Every thump.
Every drum.
Every pump of your strong steady heartbeat....
Reminds me of one thing. 

Home.
Home.
Home.

Happy Anniversary ❤️
I started to feel off in the fall of 2022. I couldn’t sleep, was so tired during the day that I could barely finish my work, and felt hungover every morning even though I wasn’t drinking alcohol at the time.

I was also experiencing strange heart flutters, anxiety, brain fog, difficulty concentrating, cold intolerance, headaches, joint pain, weight gain, and many other vague symptoms.

Over the last almost two years, I've visited a number of doctors, including a cardiologist, an endocrinologist, and my OBGYN. Every test came back "within" normal ranges.

It was gently suggested that I was "getting older." 
And that maybe it was just "stress." 
And that maybe if I "ate less and worked out" more, I could lose the weight.

Several of the doctors were very dismissive and tried to tell me this was just a part of getting older. 

And frankly, I felt like I was going a little crazy. Was I over-reacting? Was I imagining it? I started to question myself.

But I wasn't over-reacting. I know my body better than anyone else. I've lived in it for 42 years. I know when something is wrong. I know how I was feeling, and as a last-ditch effort, I made an appointment at a hormone clinic.

This week, I finally got an answer.

I was diagnosed with an autoimmune disorder called Hashimoto's disease. It's a disease that damages the thyroid, a gland that releases hormones that control metabolism, growth, and a number of other bodily functions.

Needless to say.....I'm glad that I never gave up advocating for myself. I'm glad that I didn't take the first doctor's response at face value. I'm glad that I continued to ask questions, get blood draws, and ask for clinic recommendations. I've glad that I have an answer, a path to take, and a treatment plan.

Am I heartbroken? Yes. On one hand, I want to ask the universe why it continues to give these health challenges to me. When is enough....enough?  Cancer?
Type One Diabetes AND Hashimoto's Disease? One is hard enough, and right now, two feels insurmountable.

On the other hand, I know why.

It's because I'm strong enough to handle it.

#hashimotosdisease
#hashimotosthyroiditis
#hashimotoswarrior #autoimmunedisease #autoimmuneprotocol
I'm super excited to announce that I've joined the board of directors at @opentrailranch !

O.P.E.N Trail is an amazing organization that provides equine assisted services to children and adults with physical, cognitive, and emotional challenges in South Texas.

We have been part of the OTR family since Callie was five years old so I could not be more proud to be stepping into this position.  I believe in the importance of the work that they do and, more importantly, have had a front row seat to witness the impact of the work they do in the lives of their participants ✨️🐴🐎✨️

#equinetherapy #equinetherapist #therapyhorse #horsedoftexas

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