Since I was little I saw things differently.
But life was good.
I was always tired and struggled to get out of bed.
But life was for the most part still good.
By the time I hit puberty my world started to shift.
Big emotions and hormone changes.
People I looked up to let me down.
I started to withdraw.
I felt sad and didn’t know why.
I felt guilty for every thought or action that wasn’t perfect.
I dreaded special days like Christmas and my birthday.
Big days meant expectations and I couldn’t meet those.
I became fearful and didn’t trust.
By 15 I had been told so many times that I was just “being selfish” that I “needed to choose to be happy” that my mood “sucked the life” out of those around me.
I wondered what was wrong with me.
I tried harder to be who I was supposed to be.
At 17 I fell in love, and by 18 I was married.
Still fighting through the darkness my health had started to decline.
I didn’t have a car or job.
I kept the door bolted and the blinds shut, crippled by fear.
The darkness continued.
People in our life tried to manipulate us.
We fought about the hurtful words they would say.
He said “let it roll off your back”.
I said “I can’t”.
I wanted to, really I did, but the words and actions were on a replay reel in my head.
2 months after turning 21 I became pregnant.
We were so excited.
I thought this will give me purpose, this will make me happy.
I was hit with sickness immediately.
Then only a day after announcing to my family that our baby was coming, the bleeding and cramping hit.
We were told we would most likely lose our baby.
I grieved deeply, no woman in my family had miscarried before.
I prayed for a miracle and it was answered with a yes.
Our baby’s life was spared.
My sickness increased and nearly took my life and my baby’s life.
Even a sip of water could not be kept down.
The doctor scolded me when I cried because he was admitting me to the hospital.
He said I would lose my baby within a day without immediate care.
I felt shame.
I didn’t think about that.
I was frail and couldn’t walk or even stand on my own.
After a month I was released to go.
Although I was still vomiting several times a day, the feeding tube had put some healthy weight back on my bony frame.
Halfway through the pregnancy we found out we would be having a beautiful baby girl and both of our dreams came true.
The next day we got a call.
It was her heart.
We were ultimately told she was only given a 20% chance to live and would require multiple open heart surgeries and or a heart transplant.
We were also offered an abortion.
How is this happening?
We were devastated.
I bawled my eyes out.
We found out that because of the complexity and rarity of our daughter’s heart defects, we would have to travel out-of-state for her care.
We delivered via C-section at 39 weeks 1 day gestation.
She was crying and as we reached up to touch her fingers she turned blue.
They put her on a ventilator and they rushed her off for her first surgical intervention.
A week later she crashed on her way to the OR for what was supposed to be her first big open heart surgery.
The surgeon did an experimental surgery that day that had never been done before and it saved her life.
At 2 weeks old she narrowly missed needing a transplant and went through her second open heart surgery.
She recovered and when she was 1 month old they were ready to release her.
They said she is very fragile.
You cannot be too careful.
If she gets a cold she can die.
Something inside of me flipped that day and I’ve never been the same.
The whole world was a threat to my baby.
I put up barricades.
I administered meds.
We went to weekly cardiology appointments.
Then at 3 months old something was wrong.
I called the doctor’s office and they brushed it off.
She was placed on oxygen and we took shifts watching her during the nights.
I called again and again.
Finally days later I received a call letting me know a mistake had been made and that our daughter needed immediate emergency surgical intervention.
We raced through the usual 4 hour drive to arrive at the pediatric cardiac ICU in the middle of the night.
She came through but my fear was deepened to yet another level.
I felt even more weight on my shoulders after their error.
After all it wasn’t the first medical error.
What if I hadn’t persisted?
She would be dead.
I must never miss anything.
2 months later it was time for her next big open heart surgery.
She came through but it was brutal.
About 1 month later, my husband broke.
You see, I was falling apart mentally and physically.
We were shut in just the three of us.
I had yet to recover from my C-section and pregnancy.
And finally he couldn’t take it anymore.
He said some hurtful things out of his own fear and lack of knowledge of mental health, and it shattered me.
I knew I wasn’t doing well and I started seeing a counselor.
We began to communicate better and he began to understand what I was going through.
Over the next year and a half we began to realize we had toxic people in our life.
We decided our marriage and our daughter’s well-being must come first and we began to detox the things and people who did not respect our new life.
While it was a necessary part of life, it was a painful part as well.
It made me feel guilty.
I’m a pleaser.
I like everyone to get along and for everything to be resolved neatly.
Real life though, sometimes requires you to be uncomfortable in order to do the right thing.
At 2 1/2 years old our daughter had her 5th and 6th surgical procedures, including another major open heart surgery.
We moved into a new house and without anymore scheduled open heart surgeries on the horizon I thought I would finally be able to start living a bit more of a normal life.
I was wrong.
By my daughter’s 4th birthday I had a bit of a mental breakdown.
I have spent the last 3 1/2 years almost completely bed and wheelchair bound.
Our daughter has had 2 more surgical procedures.
I’ve been shuffled from doctor to doctor, state to state, test to test, medication to medication, treatment to treatment, therapy to therapy.
You know what I’ve learned?
Our bodies are not made to live this way.
I have many disabilities.
I was born this way.
But it wasn’t until I was 28 years old that I finally got the diagnosis of OCD.
Yes, depression and anxiety.
Yes, dysautonomia in the form of Postural Orthostatic Tachycardia Syndrome.
Yes, autoimmune disease.
Yes, inappropriate sinus tachycardia syndrome.
Yes, a bicuspid aortic valve.
Yes, double inguinal hernias.
Yes, chronic fatigue.
Yes, central sensitization disorder.
Yes, acid reflux.
Yes, irritable Bowl Syndrome.
Yes, symptoms of endometriosis.
Yes, pectus excavatum.
Yes, post traumatic stress disorder.
Yes, hypermobile joints.
Yes, hormonal imbalances.
But the one that literally changed my life was OCD.
Three letters and yet it haunts me every single waking hour.
It even haunts me in my sleep.
Unwanted intrusive thoughts.
Needing approval and constant reassurance
Everything feels like a life or death decision.
Carrying the weight of the world on your shoulders.
Fearful of causing any pain to the point of fearing all interaction.
I can’t begin to explain the pain that this journey has brought me this far.
I have literally, on more than one occasion, been bawling in the fetal position begging my heart to stop beating.
I didn’t think I could take the pain anymore, but one rapid beat at a time my life continued.
My husband gave me a beautiful gift the day he learned about me and chose to understand mental illness instead of continuing to believe the cruel misinformation that is widespread in the world today.
I’ve always known that my daughter is worth fighting for.
And now as I continue to learn about myself, I’m learning that I am too.