Many years ago, before I was a wife, mother and FTD caregiver, I had a blog.
It was my form of therapy, as I found it incredibly beneficial to express myself through my words, something that I always struggled to do with my own physical voice, mostly due to my undiagnosed anxiety.
I didn't blog much after I met my husband (2012), partly because I was feeling more confident in myself, but also because he read my blog and therefore no longer had a place that was just for me.
There are so many times since then that I tried to revisit my former blog, but it just never felt right. Maybe because I was such a different person back then, someone in her 20's who moved to the big city (Chicago) and was coming into her own. To tell you the truth, I barely remember that part of my life, especially after all that I've been through in the past decade since my husband came into my life.
But more than even that, I can barely remember what life was like before my husband's disease entered our lives and changed pretty much everything.
I went back to my former blog to see what I had posted over the last few years, focusing on those after this journey of ours began in 2014. There were only a few posts during that time but the final post was the one that I could still clearly remember.
When I wrote it, I was at Cleveland Clinic with my husband as we decided to seek support outside of the Chicago area. I remember being so hopeful that the doctors would finally see our concerns and come up with a diagnosis that would answer our questions and provide a proper treatment plan.
It was May 3, 2019, months before we first heard the terms “Frontotemporal Degeneration”, or “Covid 19“ too. As you tell by that post, which I share with you, all I could think about was my daughter, who wasn't even three years old yet.
I titled the post, "I Love You So Much", which is still the way I sign all of the cards I make for her on the days when I have to go to work.
I have only been away from my daughter for a little over twenty-four hours, but my heart is completely hurting in her absence.
While everyone says to enjoy the mommy break, I find myself wishing to hear her sweet voice whispering “Mommy, I love you so much” as she cuddles into my arms.
I need her so much right now.
My heart aches for my little girl as her father’s health continues to decline and we struggle to know what the future holds for us. We both want to give her the world and make all of her dreams come true, but some days all we can do is love her with our whole hearts and try to find the strength in a response when she asks, “Did the doctor make Daddy better yet?”.
I hate leaving her for doctor appointments when all I want is her in the backseat of my car or in my lap singing along to “Tay Tay” (Taylor Swift) as we search for answers to make Daddy better.
I hate that I can’t tell her when she will have a new house, a puppy or be a big sister.
I hate even more that she can’t always have her mommy or daddy at their best and that she constantly has overhear us talking about health problems and stressing about finances.
I want to give her all of me because she has truly given me everything.
I love you so much, Emma Grace.
This disease has impacted our family so much over the years, creating challenges that no one should have to face let alone a young family embarking on the beginning of their life together.
Everything I share here is our true story. I really couldn't make any of this up if I tried. But despite all of these troubling times, we've relied on our love for each other and the beautiful gifts of our daughter, Emma, and the puppy we finally got (named Taylor after our beloved Taylor Swift) that have helped keep us fighting for them.