newbie
Active member
- Joined
- Sep 12, 2008
- Messages
- 30
- Reason
- CALS
- Diagnosis
- 06/2008
- Country
- US
- State
- wa
- City
- Lynnwood
When I looked at this thread title, I just couldn't imagine what hope there could possibly be. I've been told to "look for the silver lining" - well, hell, it's just not possible for there to be one when the love of your life has bulbar onset ALS. Well, our minister has been counseling, negotiating, supporting and encouraging us both. One thing he said was that in the midst of all this struggle and hardship, there will be some good things that come out of it. Yeah. Right.
My husband has been a likeable, social guy who loves kids and whom kids also love. He has always been like a pied piper with kids; makes kookie faces, plays with silly things, customer's kids at work wanted to come back to see him, children we didn't know in the grocery store or elsewhere just stared at him like he gave off some signal only they could pick up...this guy's fun, our friends' kids have just loved him, the grandkids are crazy about him.
In our 25 yr marriage I've stood in his shadow and watched this phenomonen, amazed by his ability to connect with kids. I love children myself but was unable to have children and we married later in life. All the kids around us are used to having a good time with us because of my husband, so as his abilities declined (to speak, throw a ball, get down in the floor to play, even just walk), I so desparately wanted the kids to continue having fun with "Auntie and Uncle" that I just somehow got over the self consciousness and began to do crazy things things myself.
One evening at a friend's, I picked up a slip on shoe and held it up to my ear... yep, a shoe phone!... and pretended it was ringing and that the caller wanted to speak to their two yr old. Well, he is a bright child and looked at me like I was nuts. So, I did it again and told the "caller" that Jimmy didn't want to come to the phone right now so they'd have to call back. After a few times of doing this, the toddler got a shy smile and picked up the other shoe, held it to his ear and answered the "ringing" with "Hello?". Everyone just about died! Since then, I've been playing around in the floor, snorting like a pig, giving penguin kisses and all sorts of crazy things.
Now the kids run to "Auntie" and, although I'm just trying to keep up the fun around kids, it breaks my heart to see my husband on the outside looking in. He can't pick them up anymore or kiss them, and I know how much he'd want to. He smiles while I play and I know he's glad for me to have the moments with the children; but I know it's only because of his declines that I have been able to shine. Although I love being popular with the kids now, I'd never want it at this cost... but there it is anyway. When I told the minister about this, he said "that's one of those good things that I was talking about"... hidden in the hardship was indeed an unexpected blessing.
Who'd of thought?!
My husband has been a likeable, social guy who loves kids and whom kids also love. He has always been like a pied piper with kids; makes kookie faces, plays with silly things, customer's kids at work wanted to come back to see him, children we didn't know in the grocery store or elsewhere just stared at him like he gave off some signal only they could pick up...this guy's fun, our friends' kids have just loved him, the grandkids are crazy about him.
In our 25 yr marriage I've stood in his shadow and watched this phenomonen, amazed by his ability to connect with kids. I love children myself but was unable to have children and we married later in life. All the kids around us are used to having a good time with us because of my husband, so as his abilities declined (to speak, throw a ball, get down in the floor to play, even just walk), I so desparately wanted the kids to continue having fun with "Auntie and Uncle" that I just somehow got over the self consciousness and began to do crazy things things myself.
One evening at a friend's, I picked up a slip on shoe and held it up to my ear... yep, a shoe phone!... and pretended it was ringing and that the caller wanted to speak to their two yr old. Well, he is a bright child and looked at me like I was nuts. So, I did it again and told the "caller" that Jimmy didn't want to come to the phone right now so they'd have to call back. After a few times of doing this, the toddler got a shy smile and picked up the other shoe, held it to his ear and answered the "ringing" with "Hello?". Everyone just about died! Since then, I've been playing around in the floor, snorting like a pig, giving penguin kisses and all sorts of crazy things.
Now the kids run to "Auntie" and, although I'm just trying to keep up the fun around kids, it breaks my heart to see my husband on the outside looking in. He can't pick them up anymore or kiss them, and I know how much he'd want to. He smiles while I play and I know he's glad for me to have the moments with the children; but I know it's only because of his declines that I have been able to shine. Although I love being popular with the kids now, I'd never want it at this cost... but there it is anyway. When I told the minister about this, he said "that's one of those good things that I was talking about"... hidden in the hardship was indeed an unexpected blessing.
Who'd of thought?!
