Pain and beauty, blended together
I never imagined that I could ever feel two completely opposite emotions watching one event unfold.
I honestly NEVER imagined we would be here.
I remember sitting in Milan hearing all the amazing possibilities that lie ahead for Ella thanks to gene therapy. And although I was always skeptical about a “cure”, I still had hope that she would never struggle the way Eli has.
My heart has fought this for a while now. Maybe because I didn’t want to admit it was coming, but I think it was even more than that, I didn’t want her to stop believing that she could do it … do anything.
I have cried more tears over the last few years watching Ella struggle with her walking. Watching her feet clip each other no matter the length of our outing. My Nervous system on edge with every step she takes , unless I have my arm wrapped around hers to catch her if she trips.
Are we giving in to the disease?! I hate it!
I cry but I don’t even know what the tears represent anymore. Sorrow, anger, sadness for her, sadness for us. The future that continues to change with every little progression. The uncertainty… the reminder that all we have is today.
So today we had to get Ella’s phone fixed, as she recently fell and cracked the screen. I took them to the mall to the little kiosk, for what I thought would be a quick screen fix.
Ella and I decided today would be the day that she used the walker through the mall as I would push Eli.
From the minute we walked into the mall, to the minute we left ( 2 hours later … in my frustrated sponge bob voice) she did the walking completely on her own! We did one lap, walked to the food court, walked around to wait for the phone and stood and waited some more. It was not a little walking and standing, but she did not complain once! She did not trip, and I did not have to wrap my arm through hers and stay on high alert the whole time.
Even more importantly she was just as happy. Happy, relieved and more independent. These are just a few words she used to tell me how she felt after we got home.
Yes I am thrilled that she felt so empowered and that should be all that matters.
I wish it was … but it’s not.
I feel selfish thinking of my own feelings.
I will do my best to keep my sorrow buried.
People who “see” me, have become like a lantern in the dark and they may never realize how much it mattered.
~ Pain and beauty wrapped into one life ~
I haven’t learned how to escape the pain yet, but I am learning how to carry it.
Fear Not 