Fear Not

I cry often, but I’m trying

I feel joy and pain together, but I’m trying

I fight the internal battle on a daily basis, telling me I’m not enough, be more grateful and remember this could all be different if we didn’t get gene therapy, but I’m trying

My thoughts invade my head “ Why don’t they have friends, why isn’t there anyone who wants to spend time with them? How could this be Gods plan to save them but essentially they are alone? Is it me? Do I not do enough to help them befriend people? How can I continue to be their everything as they get older? They need more than their family, but no matter how hard I try, I can’t make it happen.

I go to therapy, I quit drinking, I pray and take medicine, yet somehow nothing can reach the depths of the pain of watching them try to fit in with their peers… only to be met with crickets. It’s a pain you could never understand until you do, but I’m trying.

Will I ever be able to feel “not guilty” for my sorrow? Others have it way worse I tell myself. I am truly in a battle with myself every day. I don’t know if I was made for this much sorrow. I am sensitive, empathetic and compassionate, but none of these traits are going to help me push these thoughts out of my head.

Will it ever end? No! The light at the end of the tunnel is a train coming right at us, because if I am being honest, we aren’t going to wake up one day and things will be “better” Nothing is going to change, I am going to feel sorrow, and then guilt and sorrow again… because it’s hard. God knows I’m trying.

I have had many prayers answered and I know how lucky I am, but the ones that aren’t… the ones that I think are “simple” prayers, I will never understand why he leaves them unanswered. Is it me? Am I not praying enough? What did I do wrong? My kids lives are hard enough, a simple prayer for a friend .. Why doesn’t God want that for them?

The 8th grade dance is this week and maybe that’s why my mind is going on overtime. No one to go with, no yes answers to the questions of “can we go together?” There will be no group picture at someone’s house with other peers. I’m sick to my stomach because this isn’t the way it’s supposed to be. Ella told me she will go alone and meet people there. God bless her! She is nothing like me. Who will she meet there? I can’t even think about it without getting nervous, but it’s her journey and not mine. She is braver then I ever was and am, but I’ll keep trying.

For those that pray, pray for my heart to not be angry at the world, pray for Ella and Eli, that God might bring a friend into their life that wants to experience all the goodness they have to offer. Please pray for me to not give up in believing that this is all a part of some plan and that I keep trying, no matter what is in our future.

Depression is real… but I’m trying!

~ by Rebecca on May 15, 2023.

Posted in Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, anxiety, challenge, changes, day by day, depression, eli and ella, Eli and Ellas Prayer Warriors, family, Fear, fitting in, gene therapy, God, gratitude, Hero, hope, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, praying, rare disease, sadness, sorrow, special needs, strength, thankful, warriors