by Anonymous
About the author:
This article was written anonymously.
The Grief of a Grandparent
It’s hard to describe the grief of a grandparent. It’s different than the grief of the parents. One minute the world is perfect and then the dreaded phone call that changes life as you know it.
A New Reality
I have been blessed with 5 amazing grandchildren. Two boys and three girls.
Last year we found out our two sweet boys have DMD. To say I cried is an understatement. I recall going to sleep that night and waking up, thinking, “Oh gosh I just had the worst dream.”
It wasn’t a dream. It was our new reality.
They are only 6 and 3 and oh so happy. No clue about how hard life will be for them or the unsinkable bond they will have as brothers sharing this dreaded disease.
Pain
As the grandparents, the pain is different. You ache for your sweet boys and then you ache watching your children who are being so brave and strong all the while knowing their pain is beyond measure.
And you are helpless in so many ways. They live the day to day pain but as a grandparent you sit back and watch them and with each moment your heart breaks 1,000 times over. Helpless is an understatement.
All the while you don’t want to talk about it with your children as you know they need to just live day to day! With any conversation their pain is brought to the surface. So you don’t talk about it much.
Coping
I find that most people you mention it to just tell you it will be fine and not to worry and the reality is that you just can’t help it. Worry is all you do – day in and day out.
I try so hard to stay positive and hopeful that our lifetime will reveal a cure while maintaining a healthy dose of reality so you are not blindsided!
I try to be strong for everyone but it’s hard. Hard to know how much your children are hurting!
While a part of you wants to always be there to help another part of you secretly hopes you don’t live long enough to see any of them suffer.
Thank you so much for writing this. I have 4 grandsons, and one granddaughter. The granddaughter is the twin sister of my grandson with DMD. When he was diagnosed at age 7, I cried so hard that my coworkers wanted to send me home. Now, he is 15 and starting high school. The struggles are getting harder and much more real. I can only imagine your pain with two. All we can do is pray. Enjoy every single minute we have with them.
Thank you for sharing. We have 6 gkids. Our daughter and son in law have 4 children. 2 boys, 2 girls. One of their boys has DMD. He was diagnosed at 4 and is now 10. He stopped walking at 7. Currently, he is beginning to lose strength in his upper body. Everything you have shared is so true! You are broken-hearted for your children as you watch them navigate this journey with their son, but you too feel devastated. With every decline and loss of functions you have to see them grieve each loss, as do you. The reality of the future with each decline is difficult. The hope for a cure begins to slip away as you see their decline.
You also watch and wonder how it impacts your other gkids, his siblings. What they are thinking, feeling. You see their relationship with their brother and they have an empathy probably most kids don’t
You avoid talking with your children so you don’t upset them, knowing the reality they face daily.
You want time to freeze, so the disease will stop progressing.
I am often overwhelmed and amazed how my daughter and her husband are handling this diagnosis but also balancing it with the needs their other children have.
We help where we can, but you can’t take away the reality of this disease for them.
Anon I can relate to every word you wrote this could of been me I have a darling 8 yr old grandson with DMD and broken but watching his daddy and mummy is so heartbreaking people say … well live for today etc but it’s not as simple as that
We are all broken but I’ve gotta be strong for my little grandson and family and just pray for a cure
Xx