Living “50 First Dates”
Yes, we love the movie 50 First Dates, but I never imagined living it!
Although I though I knew a lot about the changes MLD would have on Eli and Ella, I could have never been prepared for the road this disease would lead us down.
Most days I feel like I am in a movie – yes, 50 first dates! Sometimes we joke about it, but when I’m alone, the laughs turn to tears.
My patience, has been tested daily, if not hourly. I do everything I can do to reply to the same questions, the same quotes and the same stories as gently as I can. I try to listen like it is the first time I have heard it, but realistically it has been the 50th or the 100th.
I am cognizant of how I react because I see it in them when someone says “I know” “you already told me”. I see the anger in Eli, or the look of defeat. I also see a sense of knowing, for a split second, that he knows he already said that. That hurts!
This has been going on for years with Eli, but I now see it in Ella, which is even hard to write. when she doesn’t recognize someone that she has known for a very long time, when she forgets what we did this morning, or last night, or where something belongs. Her frustration, knowing that it is her brain and the disease doing this to her. When she seems ok, it goes to Eli. The same stories of wrestling over and over, where he is going to go to college, getting married, having kids, names of friends, his friends from church (the adults) who he adores, the kids names from the basketball team, him wanting to just go be with God in heaven. This is NOT once in a while, it is every day and it is not what I ever anticipated.
Living with two of your children whose disease is mimicking Alzheimer’s has taken so much from me/us. Some days I feel worse now than I was during early diagnosis days, almost 12 years ago.
I want to scream, so I cry!
I want to lose my shit, so I cry!
I want to run away, so I cry!
All I can do is sit there and answer the same questions, listen to the same stories, and pray for continued patience and compassion to be the best caretaker for them.
I am sure MLD affects everyone differently and yes I have heard it before “be grateful your kids are here” however being a caregiver has taken so much of Becky, that I barely know who I am anymore.
I’m exhausted and not physically!
There is no answer, so I will keep going as much as I can. I love all my kids more than anything and wish I could change their life, but I can’t!
Please pray for continued patience and gentleness in how I take care of them. They can’t help any of this, and to see their frustration at how this disease has taken so much from them is indescribable.
I will never understand the whys of two of our kids having to face so many challenges, but I will always try to find the good and continue to share the joys and laughter that have also joined us along the way!
At least we are living an Adam Sandler movie 🥰
** There is an opportunity that might be coming up for Eli, but I need everyone that reads this to BELIEVE with me that he will get picked for this opportunity of a lifetime. It would change his life I believe. **
Fear Not 