Thursday, May 22, 2008

Sometimes Less Really Isn’t More…


I remember the first time Dear Son took a walk without any assistance in the gait trainer in elementary school. He had been working on that for some time in physical therapy, however this would be the first time they would show me that he could operate the gait trainer on his own, without anyone physically touching or guiding the gait trainer. I remember how happy he was, to navigate the gait trainer a few steps in the hall of the school and how odd it was that he didn’t need me at all. He didn’t need me to hold on to the gait trainer, to steady the gait trainer or anything like that. I remember being pretty excited on the one hand and on the other, not really knowing what to do with myself. I didn’t know what to do with my hands. Usually, I would have to help him with everything and well, he just didn’t need my help. It was such an odd feeling and a good feeling at the same time. After all, it wasn’t very often that there was anything Dear Son could do on his own, without my assistance. He couldn’t stand on his own, eat, use his hands or roll over and yet, here he was taking a few steps on his own, in the gait trainer. I remember the big thing at that time, was wondering if he was going to walk or hoping that he would someday walk on his own.

I think back to those times now and find myself wanting more. I guess maybe wanting more isn’t a good way to put it, but rather, I don’t want anything less.

I remember a few years back when he lost his ability to weight bear. Then he lost his ability to roll over. Then he lost his ability to eat. And then, he lost his ability to go on long walks with me because he couldn’t keep his head up very well. We used to take long walks around the golf course where we live and we’d stop briefly at the beginning of the walk and swing a bit on the double swing overlooking the water and then again at the end of our walk. At some point, he got too heavy for me to lift into the swing and I wondered what we’d do. Fortunately, I found that he was just as happy sitting in the rocker at home after our walk.

Soon, we moved inside and he liked to sit in his rocker and look out the window after school. As he began to weaken, he’d begin to fall over to his right side and nearly tumble out of the rocker. He has no use of his hands or arms so it’s not like he can catch himself or anything like that, so he really needs to be watched carefully. Soon, it was no longer safe to let him sit there and look out the window. When he could no longer do that, I moved the rocker over near the dining room table, where he’d sit and listen to the country music on his iPOD with his head lying on the table. When he’d get tired, I’d take the hoyer lift and take him into his bedroom. But some days, he’s not even able to do that. Today, he tried to lie his head on the table, but he couldn’t sustain it. After a few attempts, I took the hoyer lift and moved him into his hospital bed, where he could lie down and listen to his music. He was asleep in less than five seconds.

Sometimes in life, we want too much and we find out that less is more. And sometimes, less is well, just less. I feel like I am stuck in a long goodbye and I don’t like it. I want more. A lot more.

Note: Dear Son is sixteen and suffers from a progressive neurological disorder and intractable seizures due to a random mutation of the ARX gene.

11 comments:

Anonymous said...

YOur story breaks my heart. I pray for you and Dear Son. . You are his "more". He could not have a more loving, amazing, caring, dedicated mother as you. God bless you and Dear Son.

Michelle

Terry said...

Anonymous said it so well. I couldn't agree more. Dear Son is so blessed to have you as his mother. And you are blessed to know and experience the ultimate love that is so unconditional and complete.

Daisy said...

I'll bet your son is glad he was able to walk on his own, for a while at least, with the gait trainer. He must have been so proud of himself!

Poppy Q said...

Dream Mom we wish we could stop your heart breaking. We read your post a few days ago, and we don't know what to write to make you feel better.

Instead we send you hugs, and want you to know that we think you are doing an awesome job in both sharing your love with your son, and sharing your lives with us.

Anonymous said...

It is a long goodby. For some of us, the longer, the better. Sometimes it is too painful. It appears that Dear Son will be leaving earlier than most. So his time with the gait walker, all of his accomplishments were true highlights of his life, and what a joy they must have given. Less is more when that's what it takes to give joy. Both of you are true gifts to us.

jeanie said...

I just want to send you so many hugs this morning - hugs that would, I am sure, be the "more" that Dear Son would wish for you from himself.

jh an Mickey Mantle said...

We send our love to you and Dear Son this Monday morning. Jeter and Mickey would give Dear Son a few headbonks if they could.
~R

Anonymous said...

Sometimes less is more even when it is not apparent. I know as a mom you want Dear Son to be doing things, enjoying things. Showing that he is glad to be alive. Well, sometimes, sleep, rest and doing nothing is the preferred activity. I know I love doing nothing. I know that my father during his long good by did nothing for a long time, and liked it. Some of us are just not into doing a lot. Hard to believe for those who feel more is better, but for some of us less is more. And to have a loved one who loves you and understands that is the greatest gift of all. You have been a true dream mom.

Lois Grebowski said...

Hugs, my dear friend...hugs

Anne K. said...

Please know we're thinking of you.

deb said...

Dream Mom-

What a lovely tribute to Dear Son's Dad. Thank you so much for sharing.Your writing is so beautiful

You and Dear Son are in my thoughts and prayers so often.

Deb

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