Once Upon A Dream
One of my oldest childhood friends and I often joke about the endless games of "MASH" we would play as kids. One weekend we even had back to back sleepovers while also spending the entire day in between together and at least twelve of those hours were spent on this game. I guess at the time it was fun dreaming about our happily ever after- where we would live, who we would marry, what our job would be and how many kids we would have.
I always dreamed of being a Mom and for most of my childhood I was sure I would have four children- more than two but an even number for when we went to Disney World, obviously. Of course at the time our future dreams never included rare chronic diseases that force you to change your dreams. Nor was there a caution that life doesn't always go as you plan.
My Mom always told me that when she was pregnant she could eat anything and felt her best self. And so despite not knowing exactly what my ongoing health issues were, it was without concern when my husband and I began trying to get pregnant. I remember that time so clearly, being so excited to finally start our family and realize my dream of being a Mom. It felt unreal when I saw our positive test as I was flooded with excitement.
When I became pregnant I still was not diagnosed with my rare disease. I weighed 96 pounds and by the time I delivered our son at 28 weeks I weighed 90 pounds and ate 3 foods. Instead of gaining foods I lost almost all of them and was in and out of the ER and hospital with reactions and pre-term labor. The good news was by my second trimester after over a decade of searching I finally had a diagnosis and physician. The bad news was for me being pregnant was dangerous. My years of thinking pregnancy would make all my other health problems better certainly was not the case -in fact it was quite the opposite- it made me worse.
But none of this mattered once our son was born. We were blessed with a healthy and tiny little baby boy and I was a mother- a dream come true.
As he grew l began to work on my healing but even now seven years later I have not yet fully recovered. In time it became clear that having more children and our son having siblings was not in the cards. Obviously my husband and I had many conversations about this, but we always knew that risking my life to have another child would never be worth it. It would be far worse for our son to lose his mother than to have a sibling. And while this all logically makes sense, it has been a process of accepting this reality. In many ways, it still feels like the decision was made for us - another thing my mast cells had taken from us- another loss to bear because of my chronic diseases.
But we also know our son is a miracle and I know that being his mother is the greatest gift in the world. While I still worry about him not having a sibling for when I’m no longer alive, I would like to tell my ten year-old self you can in fact go to Disney world with an odd number and have the very best time. And as our son’s laughter and shrieks flow through our home and I hear him say. , “I love you Mommy” as I hug him before bed I also know that my diseases have not won and I am exactly where I dreamt I would be.
