My Endo Journey Cont...

Levi

Mr. Boy climbed in bed this morning on his 8th birthday for some early morning cuddles. He is such an amazing little boy. The biggest heart - he is quite literally a giant ball of love. I tease him saying you are getting too big, and I need him to stop growing. With eyes closed and snuggled in, he whispers "If I could, I would Mama." And my heart just explodes. I'm overwhelmed with love and gratitude for this little miracle of mine.

He shouldn't exist. I was told I would never have children naturally. We fought the odds with Sydney, but we were actively trying to get pregnant. Levi was a gift. A gift we weren't quite ready for, but none the less he came into this world to be a shining light. Here's his story and what led to the greatest gift I have ever been given.

I was 35 years old. My world consisted of taking care of 4-year-old twins, and baby Sydney.

My mom was dying from brain cancer and the first thing she lost was her ability to communicate. She was stuck in her head like a prisoner and so I began writing her letters. At the time, I was so angry. I felt cheated that we couldn't have all the conversations my heart was begging for, but now I've found a new meaning and focus. I have the words I gave my mother that I know meant everything to her, I never would have remembered otherwise. I also know we are both too emotional and could never have spoken those words to each other, and we didn't really need to. I had her heart thru and thru and that was all I needed. 

My husband was working full time and going to culinary school at night. We were living in Cleveland, with no family near and had just decided to stay and make it our home. We bought our first home together in Rocky River, and a few months later he had found a space that would become home to our first restaurant. 

The pain started again. The same thumb press to the lower spine, at first for just a few days. The next month for about a week. The next month 13 days. It felt like a wooden rod pressed firmly on my spine. But the symptoms that began before Sydney were intensifying. My ovaries felt as if someone was squeezing them right to the edge of popping, my hips felt as though someone was ripping them from their sockets, and the whole length of my back was stiff and tight and sore. My hips were the worst, it felt like I was nine months pregnant. I was on my way to this becoming my constant daily life and I was petrified. We had moved from the east to the westside of Cleveland and if you know the city it felt like going from New York to LA; travelling back and forth was not something you did often. So, I was in search of a new endo doctor. By now the internet was a place I could go to search for specialists but since the doctor themselves list their specialties it wasn't as helpful as I needed it to be. The doctor I found ended up being one of the worst of the worst. The ones that have no business in gynecology let alone a specialist for endometriosis. 

It was the first time I was brought into a doctor's office instead of an exam room. He sat in this dark mahogany regal office with all the medical books behind him. He was behind a giant desk with his leg crossed over and his fingertips resting together at his chest. He was an older gentleman with dark hair and good looks, but you could feel his judgement like thick molasses hanging in the air. I began to share my story from 20+ years of living with this disease. He looked at me with skepticism, like he was trying to find the holes in my story. I remember snippets of the conversation like scribbles on the wall in black sharpie... 

"You don't 'appear' to really be that affected by endometriosis."

"I'm not sure you really have endometriosis; I will need to see your surgical records."

"You don't have real pain from endometriosis, if you do have it then maybe discomfort is a better word for you." 

"Women with real pain need surgery every 2 years max."

He sat and watched the tears fall as I was shell shocked by the ignorance and judgement of a doctor who is supposed to be an advocate for women. If he performed any kind of exam, I've blocked it out. The next thing I remember is him telling me to call and come in 3 days after the start of my next period and the most he'd give me was an iud. He made it perfectly clear that my current pain was inconsequential, treating me akin to a drug seeker. I didn't have time to find another doctor, so I left with my head down and my heart battered and my body in worsening pain every day. And I was powerless to stop it. I prayed the iud would help lessen the symptoms or at least stop them from getting any worse.

A few weeks later we were hanging wallpaper in "the nook" of the cafe and it dawned on me that I was late. Not thinking much of it, I made a joke and my husband looked at me with such shock that I laughed out loud. We went to get a pregnancy at the CVS in the plaza and walked back to the cafe to take it.

I took all 3 tests. Each one was positive. We were scared, weeks away from opening the doors to our first restaurant. My mom was dying, in our first home we just bought together. I had 3 young children that needed me. I was in pain and barely making it thru the day. How were we going to do this. 

There was a moment where I thought it was too much for me to handle. I wasn't supposed to be able to get pregnant and certainly not at 35 and never naturally. A second later, I felt my belly and was overwhelmed with the realization that against all odds this little miracle was growing inside me, and I knew that I already had my answer. I made the choice that day to love and honor this little nugget who albeit untimely, was making an incredible arrival on the scene. There is power in having a choice and making the decision that is right for you. And my sweet Levi lives his life knowing he was chosen and loved fiercely. I was never forced against my will. What a gift for both of us.

And while all the pain that had disappeared in the first 2 pregnancies was here to stay, I chose to see him as the beautiful gift that he is. Who showed up at the exact right moment. Who brought joy and hope into a scary world we were living thru.

We lost my mom in July that year. It is still one of the deepest heartaches of my life. I miss her hugs and her love and just her, every day. Before she passed, I'd catch her staring at my belly, and I'd move so she could rest her hand on him. We both knew that that would have to be enough. Walking down the processional at her funeral almost brought me to my knees. I had to be strong for her. I had to be strong for him. I had to be strong for all of them even though I wanted to break so badly. I didn't because they gave me the strength to keep putting one foot in front of the other. What an incredible gift I was given.