Friday, October 02, 2009

Standing in the Checkout Lane of Life…

The school bus arrived home early, for the half day of school. It was only 1 p.m. now, and we were only through part of the day. I tried to visit a bit with the substitute bus aide, as I took Dear Son off the bus, but Dear Son wasn’t interested in idle chit chat between us, as a gentle rain began to come down. I rolled the wheelchair up the drive, into the garage and closed the door. I had hoped that once inside, I might get a little time to visit with Dear Son before he fell asleep for the night.

His days are shorter now. He falls asleep pretty much right after he gets off the school bus. I try to sit with him outside on the drive for a few minutes, on really nice days, to talk about what he did at school that day, but many times he falls asleep right there. If that weren’t enough, they tell me he has started taking more naps at school.

I take him inside and put him in the recliner in the living room, trying to avoid the inevitable. At least he’s not in his bed, I tell myself. Sitting up will be good for him. Within five minutes, however, he is fast asleep. I move the wheelchair past his rocker that sits at the table, the one he used to sit in after school just last year. It sits at the table, as a dull reminder of the good old days, never to be used again. But somehow, I can’t bring myself to put it away. That would be too final. I pass the rocker on my way to the recliner, taking a blanket to cover him up while raising the footrest up to make him more comfortable. He sleeps until 5 p.m.

I am concerned a bit, by the disease progression. By now, it’s not a surprise. It’s as if he’s in the check out line of life. As Dear Son stands in line, in his wheelchair, I keep grabbing his hand, trying to bring him back into the store. It’s as if, I keep pulling his hand, trying to get him to look over at me while telling him, “Remember this, as I grab a toy he might like…or remember when you used to like this…and then I would tell him something that he used to do, when he was a little boy.” I’d then get desperate and grab at just about anything, hoping to make him laugh, like he used to. All the while, it would be getting harder and harder to get him back into the store. The line would move forward, with the check out getting nearer and yet, I’d go around the store, trying to get Dear Son’s attention, to pull him back out of the line. In the early days, it was easy to distract him, when he was further out in line, but now, as he moves towards the front, he no longer wants to get out of that check out line, nor does he want to look back.

It’s hard too, just getting him to smile. Part of it, is maturity. They don’t laugh at seventeen as easily as they do when they are ten. And part of it, is that he’s just plain tired. I can see that it takes all of his energy, just to get through the day. Those days are short now. He sleeps from the time he gets home from school at 3:15 p.m. until the next day. He might wake up for five minutes around 5:30 or 6 p.m., just enough for me to start his supper through the feeding tube, then he’s back to sleep until the next meds are due around midnight. He’ll wake briefly, I’ll change his diaper, then he falls back to sleep. The only other time I hear him, is if he cries out from a seizure or chokes on his saliva. If that weren’t enough, he’s started to take naps at school. These aren’t medication related anymore, it’s just that he’s moving up, in the checkout line of life.

For that reason, everything is riding on the “Make a Wish” trip. Someone asked in the comments section the other day, how it was going, and that they wanted details. And for now, I don’t have them. We should be getting our itinerary any day now, and when we do, I’ll share it with you. But more than anything, I need Dear Son to enjoy this trip. I want to see him laugh, as in really big belly laughs. I want to see him smile. I want the days to be so much fun that he doesn’t want to sleep all day. I need that for me, as much as for him. I need and want to be able to look back and remember that smile, the one that would light up a room. I need to remember the belly laughs and how his head would fall forward from the belly laugh, because he couldn’t laugh and hold his head up at the same time. I want to remember the pretty girls, the ones he stares at and tries to get their attention. I want to remember the sun on his face, as I hold him in the pool, him with his eyes closed, in a deep state of relaxation in the swimming pool, like he loves to do. I want to remember all of that. I want it to be the best. The Make a Wish trip is like the giant blue light special in the store of life, where I pull Dear Son out of that check out line, and bring him back into our world, even if it’s for just a little while. And the 18th birthday, well, it will be the time of his life, or so I hope.

But today, I’ve watched him sleep in the chair. I’ve moved him into the bedroom and tucked him into his bed. I’ve changed his diapers, fed him, gave him his medications, hugged him and kissed the stubble on his cheek. I gave him everything I have, because I love him and so I won’t have any regrets. But somehow it’s not enough. I need to pull him back, pull him back into our world for a little while longer, so I can hear his laughter for a little while longer. But tonight, it’s not going to happen. No tonight, I just hear the rain.

Note: Dear Son has a progressive neurological disease and suffers from seizures, dystonia and severe mental retardation due to a random mutation of the ARX gene.

16 comments:

Poppy Q said...

Dear Dream Mom, we hope that dear son gets to enjoy his holiday and that you get some special memories to share together, even if it is just sitting beside the water with the sun on your faces.

Dear son is lucky to have you with him on his lifes journey, to be surrounded by your love.

Sending you hugs.

Julie and Poppy Q

The Keeper said...

You're very brave. Thank you for writing about and sharing this time in your life. I admire you much.

Terri said...

I hope your trip is lovely. You and Dear Son are in my thoughts and prayers.

Mary said...

A very difficult road you've been given to walk...you handle it much better than most would, including me. I know you do and will continue to gain much strength from God...He knows and cares about Dear Son and you. My prayers are always with you.

Take care,
Mary

Heather said...

I hope you have a wonderful, memory-making-full trip! Wishing you both all the best!

Kathy said...

This post made me cry... God bless you during this part of the journey with your Dear Son.

Michelle said...

It is hard to know what to say. That I am sorry doesnt cut it. I pray for you and Dear Son to race to the blue light special, revel in it awhile, and laugh some good hardy laughs. and I pray for peace, for now..and later. And I wish I could be there to help you get through the hours, but I cant. and so I pray. Hug him for me, willya?

Emily said...

I will keep praying for you and Dear Son. I hope and pray that this trip will be a truly wonderful experience for all of you.

Andrea said...

I am sitting here crying at my computer like a damn fool. I am a hospice nurse, I deal with death every day. I am not afraid of those hard discussions, of telling a family that "this may be the end". I am not even afraid of the long silence after that, which you learn to just sit with. And still...

....your words have moved me to tears. Because I am also a mother. And your love for your son is so palpable. You have my utmost respect, and I wish you grace and courage and peace with all that is to come.

And a wonderful wonderful make a wish trip, so you will have beautiful memories to treasure.

Thimbelle said...

Here's hoping that the line comes to a halt. And that the Blue Light Special is enchanting enough to keep him in the store for a while longer.

(((Hugs))) Thim

Louise said...

Thinking of you and Dear Son and hoping for a wonderful time for you on your Make A Wish. Your writing and love for your son are so beautiful...

Gabriella said...

I hope that this trip turns out to be everything that you are wishing for. I am hoping for wonderful memories for both of you, lots of sunshine, and laughter. You both so deserve it!

Summer said...

I was thinking this morning of a post you wrote so long ago. I had just sewn some pink pants for my daughter. I wondered if they would get dirty at school and I remembered about the dirt hole your son would play in. I remembered the dirty clothes equating to having fun. I stopped worrying about the light pink pants getting dirty.

Checking in tonight, on your blog, as a mother I want to find a way to stop the line. I know you can't. I'm sorry.

I hope you do have a wonderful trip with Make a Wish. I hope you get some belly laughs and sunshine.

Summer

Catherine said...

Ah DreamMom, I too, hope that the MAW trip turns out to be a good one for Dear Son. As he gets more tired, as time goes on, changing the day schedule may be an option. Not all of operate on the traditional, day/night schedule. Dear Son might do better on 10 hours of sleep, 5 hours awake or 20 hours of sleep 5 hours awake or 5 hours of sleep 5 hours awake. If you can somehow work out his optimal schedule with yours--maybe a big long nap in the middle of the day, maybe just a half day of school, the nap, then a few hours of awake time at home, then bedtime, it'll work a little better.

We are a family of dysfunctional sleepers and have had to adjust schedules as a result.

Dream Mom said...

Thank you all for such wonderful comments. I appreciate it.

Summer-Dirty pants equal fun:)There may be a time when you will remember the fun and not the pants.

Catherine-Thanks for the good ideas.

Kristin@Bouelvard Interior Design said...

Your post brought me to tears. I hope your MAW trip is so very special.

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