Hello and welcome to my first blog post!
For those who do not already know me, my name Deborah Ackerman. I am 32 years old by time, but feeling 50 physically. My hip is really killing me!
A short bio of myself: I am a wife, mother of three, social media manager, writer, author, coffee-junkie, penguin-obsessed, fire-breathing mess of a lady, saved by grace!
To answer the question in the title: "Why Am I Here?!", it's a little bit of a read but I suppose that's why you're here. Since the age of 14, writing has been an outlet for me. My quiet nature made me a target for bullying and nasty comments through my middle and high school years. I found with writing, I could shift and mold myself into whoever and whatever I wanted to be. The words I wrote painted a different perspective of who I could be, and also who I didn't want to be. My stories shifted my focus to what was happening around and inside of me, turning my life into something I wanted to read and be a part of.
Fast forward to 2009, I was now married with two kids at the time. I continued my writing, though it wasn't as often as I would've liked it. My 18 month old son, Luke (who was developing normal at this point), starting showing signs of regression. I was told it was nothing and just to move forward with parenting as normal. Jumping forward to December 13th, 2013, still married and with three children now, I receive a call from my sons' neurologist. This was the call I had been waiting for for four and a half years, but not the one I wanted. During that time, my family and I had been searching for answers to what was going on with our little boy with no avail. He had continued going backwards in development and no one could figure out why.
Every path came to a dead end, but not that day. The answer I had been seeking finally came in the form of GM1 Gangliosidosis Type 2, a rare degenerative genetic disease that is always fatal in children. As if the news of Luke wasn't terrible enough, we found out his little brother, Isaiah, had it as well. For the first time in my life, I found myself not being able to write myself away from reality. There was no storyline that would take me away from the hurt, sorrow, and hopelessness I felt. Writing was all I had to escape, what would I do now?!
"How are you doing?" from my friends and family became the most dreaded question. I was never really great with speaking my emotions to begin with, much less at that point, so I struggled to find an answer to my loved ones question. It was within the months to follow that I decided to start writing about the one thing I avoided my whole life: how I felt. Not how I wanted to feel or what I didn't, but the real, painful emotions I was struggling to work through. My hope was that I could finally honestly convey my circumstances to those closest to me, but it turned into something else entirely, something beautiful even.
While I would write my emotions out, my perspective would shift from sorrowful woes to finding revelation in the storm of my life. What used to be my escape, became my rescue. My writing didn't surface online until a friend suggested I make a Facebook page about my family's journey through rare disease. I had usually kept my writing to myself because of my own doubts about it. I found that not only did people like what I wrote, but it helped to build an understanding and acceptance into the world we were thrown into.
Now, in 2021, I am still married to the same man and with three children, two in heaven. My sons' determination on this earth and our journey through and after their lives pushed me to keep up my writing, to the point of writing a book about my life as a rare disease parent or a Dragon parent in 2019. As the road to our lives changed, so did my writing. Wandering the roads of grief, marriage after loss, parenting my daughter through it all is where it has lead me now.
After encouragement from friends and family, I decided it was time to start this blog to share my thoughts and feelings with you all.
And here we are!
There is much in-between these moments I could talk about, but if I wrote it all now, I wouldn't have anything else for you to read :).
My hope and prayer with this blog is to help build encouragement, hope, and understanding of different perspectives through my life experiences and pondering throughout the week. The goal is to post once a week, but we'll see if life has other plans for me.
Until next read, thank you for your time and have a blessed week!