Etched in my memory
There are days you can instantly draw to the forefront of your mind, and you can remember every little detail about that day. It might be the outfit you were wearing, the weather, or maybe you can still hear the ringing of the phone. Then comes the event that changes you on a dime and suddenly you have a snapshot of everything that day… forever…It becomes etched in your mind and it becomes unforgettable!.
Ten years ago today, we were all in the house, the weather was crisp, as the sun was shining. We had only gotten their blood drawn a few days before to test the other three kids for MLD, so I was not expecting it to be CHOP when the phone rang. One of the boys answered and I saw the look of Eric’s face like “mom, it’s CHOP” I took the phone and I could tell she had me on speaker which I knew wasn’t good. She said all the testing was back and that Eric and Evan were carriers. At that moment timed slowed as I suddenly knew what was coming. She said she was sorry but Ella also had MLD. I remember hearing her continue to talk but I wasn’t interested, as my ears were full of ringing, like suddenly everything was going to go black or blank. I couldn’t think so I passed the phone off, and I walked out.
I didn’t know what I was going to do in those next few moments, everything was a blur. My heart seemed to explode with sadness at the thought of losing two of my kids.
Ella was four, so she didn’t understand, but when we did tell her later that day, she seemed excited that her and Eli both had it.
It makes me wonder if she somehow knew this was part of her plan, if she made a contract with God before coming to earth to fulfill her mission and be one of the ones to help this trial for MLD. I would like to believe that she knew this life would be a challenge, but the people she would touch and the lessons learned, by her, and through her would all be for growth, eventually working for good in the end.
Although I like to believe this, it’s hard not to be reminded daily how this disease has changed her. Her brain, her feet, her hips and her walking. Some days I feel that she has early dementia. The friendly reminders that turn into frustration, the showers that have to get re-done to fix what was missed. The list unfortunately goes on and on.
My daughter that I prayed for, that I dreamed of making things right with, being excited to teach her to drive and someday watch get married…MY DAUGHTER…although many of these things might not come to fruition, I am slowing learning to accept that, BUT will continue to pray and believe that the joy will still be there, just in different ways.
To be honest, my heart breaks every day and if you don’t know, then you could never possibly understand the feeling. I try and I try, I pray and I ask God every day to guide me. It’s hard to believe we have come so far, yet still feel the same in so many ways.
My daughter, I will love you through it all, the good and the bad, the scary and the unknown. I will thank God every day that although our journey might not be what I thought, I can promise you, that the days ahead, whether good or challenging, will be filled with unconditional love, patience and gratitude,) I am so grateful that God chose me for you… no matter what!
Cheers to 10 years of living your best life, making memories, loving hard, but most of all cheers to me being allowed to love you, to be your mom. My Ella Rose, one of my greatest joys!
Keep believing and kicking MLD to the curb! We all love you!!
Fear Not 