And so I write
I watch from afar in admiration of so many special needs moms, so many friends; sad to say, who have lost children. I watch from afar and wonder how they do it every day with a smile, how they continue with joy in their heart and seemingly without the blanket of fear and sadness that seems to be smothering me. As I peek into a fraction of their life I try to capture any small clues of how they endure the life that has been placed on their shoulders…I still don’t have the answers but I am trying to live out the questions hoping the answers will come some day and until then I write.
From the beginning of this journey I felt strong and confident… I felt like nothing would stop me from fighting for these kids and I felt like I could handle it all. For so long it seemed to go according to plan and we powered through. Looking back, maybe it wasn’t quite as it seemed. Now, when I look in the mirror I seem to see someone different or maybe the same person but a deeper part of her. I see a woman who is letting the thoughts of the future taint her present moment and I see someone who is finding it very hard to move forward because she is stuck in the past or dreading the future. I see a woman who can barely sift through the remnants and the memories of who she once was. It’s hard to believe some days that this is the same woman and it’s shocking to see who I have slowly turned into.
As I was in therapy this week we talked about HOPE and what my hopes were for the future. I had a piece of paper in front of me with the numbers 1-10 written down. I was supposed to fill them up. As I looked at the blank lines on the paper, my response even shocked myself. ” I can’t really mention anything or write anything down” I said. Hope seems far away in the distant past … a memory of what I thought laid ahead. My Hope and continuous believing in something better, had slowly turned to fear and dread. Fear of losing that hope that I clung to for so long and dread of the future. I wondered if I could allow myself to believe in hope again.
We all have our own demons and many don’t talk about them. We fight through them in ways that are individual to us because of our own needs and desires. I have demons that have become a part of me, they are intertwined with almost every breath I take. They have become my worst enemy, they have taken me to the depths of despair and they have even made me question my very existence. They have ALSO helped propel me to fight harder, to try again and again and to dig deep to find even a sliver of the person that I know I was made to be that lives inside of me.
After my appointment and after I had some time to think, I realized that I can find and believe in HOPE again… no matter how small it might be. Truth be told, the demons that I am fighting; well they haven’t been easy to overcome, but I just realized that the day I started trying to overcome those demons, became a day with a glimmer of hope that I didn’t even recognize as such. It was a day believing that tomorrow could be better and it was a moment hoping that I could turn my mess into a message. A dream that that little sliver of hope could possibly turn into so much more .
So tonight I go to bed in admiration of myself for once. Not because I am not sad or fearful anymore, not because I found a way to push the hard feelings and emotions aside, but because I am allowing myself to believe in me as much as I believe in others. I am fighting an uphill battle every day but if I can finally learn to have as much compassion for myself as I do for others then maybe that will give me the strength and willpower to keep the possibility of HOPE alive.
It’s time to remember that when we wake up in the morning, We can choose to let go of what we did if we aren’t happy with it!! Every day is an opportunity to choose differently! May God give me the strength to never lose sight of the fact that where there is tomorrow, there is always hope somewhere…no matter how small.
~ by Rebecca on January 25, 2020.
Posted in Diagnosed, Life after diagnosis, My journey, the ride of my life
Tags: acceptance, challenge, changes, demons, Eliandellasprayerwarriors, Fear, God, hope, journey, life, metachromatic leukodystrophy, MLD, sorrow, strength, warriors