Monday, March 10, 2008

Winning Ugly

I’ll admit Dear Son’s inability to process his food a few weeks back threw me for a loop. I know it shouldn’t, I mean, it’s not like he’s been eating or anything. It was just the realization of another milestone in his downward spiral was achieved, if you call it that. Kind of like walking downhill and then slipping on the ice and nearly falling. You get hurt trying to stop the fall and then you realize what could have happened.

It’s a little more fun on the other end, when they are doing things to get “to” a milestone. Like maybe standing for the first time, even in a stander, now that’s moving forward. But the whole tasting thing, and not being able to eat, was just a reminder that there were ugly days ahead.

I remember lying him down that night to hook up his feeding tube. The cat walked by and I thought of how odd it would be if the cat were hooked up to a feeding tube or had a g-tube. It would be weird and we just wouldn’t do it for a cat. But somehow, it seems like a pretty good idea for our kids. After all, it’s a stop gap method for them. I remember we did it because Dear Son was having difficulty taking his seizure meds. They were mixed with food and he had so many of them that it altered the taste of the food and he no longer wanted to eat the food. Once that happened, he’d have more seizures and eventually he needed to get the g-tube, which solved that issue. It wasn’t until the MRSA pneumonia that he went to g tube feeds.

This whole deterioration piece is not fun. The botox injections, that were to assist with the choking at night, peaked at around the three week mark. For the first three weeks, it was great. Dear Son slept well since he was no longer choking through the night. It never seemed to impact his drooling though. After the three week mark, things went downhill. There are some nights that he has a pretty tough time. He’ll yell out the entire night and be exhausted by morning. It’s not every night but it happens enough. I am back to elevating the bed every night again. True, there were benefits to the botox injections, such as he’s not choking as severely as he did before, and for that, I am thankful.

But I ask myself, after the whole tasting incident and the realization that he’ll never, ever eat again, what’s next. His paternal Grandmother says to me from time to time, “that there is nothing to look forward to.” She would go on and on saying how Dear Son has nothing to look forward to and then sometimes that we, his Dad and I, had nothing to look forward to. For the most part, I just listened and it never really bothered me because I was so excited just to have Dear Son around for another day. I know that might sound silly but I am so thankful that I get to spend all of these days with him and I know that’s a blessing. I am glad I got to see him mature into a man; I am happy that I saw him grow up. I absolutely love seeing him smile. It really makes my day. But his inability to do anything more than taste his food changed all that. I knew then that we were headed backward. There was no more going forward. Ever. And that’s when I realized that there wasn’t much more than ugly days ahead.

It’s getting a little harder for him to get through his day. I work hard in the morning to get him ready for school and to get him to smile. I try to do and say things to make him laugh. More often than not, I might be lucky to get a smile out of him. He seems exhausted. After school, is worse, in some respects. He gets off the bus and looks like he’s been beaten to a pulp in his wheelchair. There are no smiles, his head is down and he sometimes has slept on the bus. He does perk up once he’s inside, and he’s happy to sit in a rocker for thirty to forty five minutes, but most of the time, he sits in his rocker listening to his music with his head on the table. After that, I take him in to his bedroom and he falls asleep the minute he hits the mattress, like within a minute. He nap until dinner time and when he wakes up, I’ll start dinner, which is Pedia Sure in his bag. And that’s it. He sleeps until morning, yelling out for diaper changes, choking, seizures or simply for me to roll him over.

I don’t know what more I can do for him. I just wish it were different for him. I mean, what’s next? What happens when he’s hospitalized for pneumonia, or something like that. What will I do? When is it enough? When do you stop? How do you stop? I just know I don’t want to be there. I don’t want to have to make any decisions. I want it to be natural. I don’t want to be put in any positions where I have to make any decisions. It’s just too hard. Because if I save him, I have nothing. He’s too tired and it’s physically exhausting to get through his day. I can see that. But if I lose him, I have nothing. What will I do? And how will I ever reconcile the fact that I made that choice? I can not do that either. Ever.

In football, when they fight hard to win, they call it, “winning ugly.” But in this case, I’d just call it “ugly.” Just plain, ugly.


Anonymous said...

You are right. Winning ugly is just that -- ugly...I wish I could help take away the pain of the unknown to come.

Know that my thoughts and prayers are continually with you, your family, and most of all -- dear son.

J said...

the strength of your love and devotion to your dear son astounds me. I pray you never have to make the decision, but more than that I pray for a few more pretty moments, because sometimes all you need is a flicker of pretty to take the ugly away.

summer said...

When my daughter was younger we were faced with the possibility of degenerative conditions. It totally changed my ideas about living with life support measures. I just couldn't and still can't imagine with life without her.

I'm so very sorry you are in this position. It's not fair. But from reading your blog I know you and DS have lived through this gleaning the sweetest moments non the less.

My thoughts and prayers are with you too.

Christina said...

I have followed your blog for a while. You have done the right things for dear son for so long- you have made a beautiful life for him, enabled him to develop to his full potential and strengthened and taught others through your story. You will continue to do the right thing for him I know. The decisions you know you will be facing soon are terrible and hard but you are wise and you love your son and you will know what is right for him at the right time.

Erica said...

Thinking of you and your precious son.

Michelle said...

DM, you'll know. Right now, it doesnt seem possible to ever make that decision, when "alive" is no longer "living". I made it for my son when we took him off life support. I knew. Thats not to say that it is easy, or that you never second guess. Even today, 8 years later...I wonder. Did I do the right thing? But I know, in my heart, way down deep, I did everything I did because of love. If thats what you do, you cant go wrong. I think that in many ways, you are being clobbered with reality right now, so many scary and sad things that are making you think about every step. Maybe thats healthy? Maybe its good you have the time to think through the what-ifs now. Because the time will come when you either make the choice or you dont, and you WILL know what is right. Because whatever choice you make it will be done with love. Think of you often...sending prayers.

Anonymous said...

Your posts are always so humbling. You and DS have such a beautiful relationship and you have a wonderful way of seeing the positive side of life. I wish there was something to do or say to help DS or to take some of your pain away. You and DS are always in my prayers. As one of the other commenters said, may there be some pretty moments for you.

girlfriday said...

Your continual love for your son is awesome.
I wonder, having been with my dad in his final months/ days, would having support from a hospice team help. I also wonder why on top of the loss of a loved one, trauma has to be involved for the caregiver.

Baby Island said...

Dream Mom,

I have checked your blog everyday since your last post, hoping that things were ok for you and DS.

Your words today carry so much emotion, I know this is so hard for you. the fact that you are able to write these posts and share with your readers this pain and struggle is remarkable.

I am really glad you are still writing, because we are still here for you, reading. I wish there were some other way to offer you support, but can say that whatever choices and decisions are put in your path you will still have us here. for what little that is worth.

Keep writing and sharing. Your words are valued and it give those of us who are listening a chance to send a big hug and offer a virtual shoulder.


Deb said...

Dream Mom-
You and Dear Son are in my thoughts and prayers so very often.

I so hope that you never have to make a 'final' decision regarding Dear Son, but if it ever comes to that, I know in my heart you will make the right decision for both of you. I have been called upon to make that same decision for my own dear son. Trust me, you will know what is right.

I am continually amazed and humbled by your strength, love and devotion to your Dear Son. Thank you for sharing with us.

Please let me know if I can do anything for you.....


Anonymous said...

Oh Mom, I know this so well "when is enough enough?"

I think I shared this with you before, but in 1996 I had to make that decision for my son Christopher. He was born with several issues stemming from a chromosome duplication, but the main issue his trachea-it was formed of bone not cartilage and would never grow with him. Fast forward to 22 months and my sweet guy finally got the dreaded pneumonia. He started going downhill quickly and barely made it to the hospital. He was there for a month, and as the wonderful ICU doctor said to me "Christopher needs to go home to die in peace". Those were the most comforting words because I knew enough was enough for him. His lungs were beat up, his heart was enlarged from his labored breathing. He had had enough, he was exhausted. His little body couldn't handle any more, and I knew it in my heart of hearts.

I had Christopher another month at home and at the end, it was peaceful and he was in my arms, at home. I let him know that mommy would be OK, that is was OK for him to go to sleep, and he quietly slipped away. He was 22 months old and I was so grateful for his life - he was and still is my hero. He gave me more than I can put into words.

I know you'll know when he has had "enough" - you are as much a part of him as you are yourself. you'll know it in your heart.

You are a wonderful mother and I admire you so much.

Jamie from Portland Oregon

Poppy Q said...

Awww dream mom, don't be sad. You are making me and my mums eyes leaky. You shouldn't question yourself, every decision you have made for dear son has been the right one, because you made that decision with more love than anyone else could give him.

I have been watching and looking for posts from you, we were getting worried too. Don't bottle it up sweetie, you can share with us. Even the cat bloggers understand.

I know you must feel alone and scared about what is happening. But we are here to hold your hand across the blogosphere and we are sending you a thousand warm late summer hugs to you, your boy and Wiggles the cat.

Poppy Q and Mum

Anonymous said...

Just wanted you to know that I am praying for you - for wisdom, strength and comfort.

isles said...

Dream Mom, I don't think there is anything purer or more beautiful than the love you have for Dear Son. There is no doubt that he knows how loved he is and always has been - the very most important thing a person could ever want in life. At every turn you have made his life the very best it could be. Your instincts are good and you can trust them.

Kathryn said...

DM you and DS are in my thoughts. I am sorry you are going through this. I am sorry that DS has a degenerative condition. I am sure your love is the thing that he lives for! You are such an amazing person and Mom.

Anonymous said...

You are such an amazing mother. Dear son is so very lucky to have you, dear mother. I pray for you but I KNOW that you will make the right decisions. The decisions that you make will be well thought out, careful, and most of all made with the love and strength that is evident in all of your posts. God bless you and dear son.

jandbzmom said...

Dream Mom,
I too have watched and waited for posts always dreading the next one but knowing how beautiful they are. You have such a way with words and can tell us all so movingly of the trials that you and ds must go through each day. I read your posts and am amazed at what a strong person you are for ds. You have given your ds so much strength by example that he is just a strong as you. When the day comes and decisions have to be made, you will make them with strength and love knowing you have memories of "pretty" that will last so much longer than "ugly". Bless you and know that you, ds and dxh are in our prayers daily.

(((((hugs to you and cookie eyes)))) - I hope I'm remembering that correctly...

Anonymous said...

It is so very difficult to be anyone's caretaker. I remember reading how the caretaker needs to strike a balance between caring for self and the person for whom he is providing the car. I could only think what a luxury balance is. The reality is that many of us are barely making it.

Of all caretakers, I find that you are finding a balance of sorts. As you focus on singular tasks. Though they are losses in ability and enjoyment, they are gifts in that they can give pleasure. THough DS can no longer eat, he can taste. And that taste was so special to him, made so by the scarcity of this sensation for him these days. I know that the sleep saddens you, as you see him connecting less with our world, but ah, sleep can be a comfort and for many of us, more sleep is what we crave. Even as his journey is taking away earthly pleasures, it is increasing the enjoyment and making more precious the ones that remain. So many moms take so little pleasures in things so taken for granted, and are distressed when their children do not meet lofty goals. To enjoy a taste of food, to be able to slip into a slumber and enjoy small bits of a day, can be a gift. And you when you see the glass half full, you take pleasure in his enjoyment.
I hope DS sleeps his way to the other side, with little wake treats such as his tastings, music, and the presence of his DM. You have truly become a dream mom.

Many prayers, hope, and love

Dream Mom said...

Thank you all for such beautiful and eloquent comments: the "pretty", the story of Christopher, "cookie eyes", the luxury of balance and all of the others. They mean a lot. I only hope I can be as eloqent when another person experiences such losses.

The "cookie eyes" was a pleasant reminder, from an old dear friend. For those that may not know, Dear Son used to love a particular kind of cookie when he could eat, many years ago. He liked, "Nutter Butter Bites", a peanut butter sandwich cookie. No other cookie would ever substitute either-he'd rather eat nothing than a substitute. Although he loathed any kind of junk food however he did love those cookies. When he was finished eating, he would look over to the right at the armoire (it functions as a pantry in our apartment) in our dining room and smile communicating his wants through his eye gaze. When I opened the pantry, he would smile and laugh, hence the name "cookie eyes." For many years, this was his nickname at home and sometimes at school. Thanks for the "pretty."

Christina said...

Dream Mom-
I wanted to tell you that a year ago when the "Ashley treatment" made news- that you were the one who made me change my mind about how I viewed it- and I now fully and completely believe that it is the wrong thing. At first I was sympathetic towards the parents' position but your eloquent writings about it completely changed my opinion.
Thank you for that...I know your writings will continue to inspire and challenge people...

(I read this today and it brought that all to mind:

Anonymous said...

I guess what is so beautiful about your stories is that they give meaning to a life even when it is slipping away, and even when it is so far from what most of us want and expect from a child. There are always the pangs of regret when we look at our children as they grow and are grown, and they have not fulfilled what we thought was their promise or life's promises. Sometimes the gap is such that many regret that the life occurred. When we look upon those who are unable to do much of what we take for granted, we feel a pity, and hope that we or no one we know should undergo such a process. To read the realities of such caretaking and yet see the love and joy that comes with the pain, is to read a true work of complex art. There is too little out there that describes the life of caretaking an older child or adult with many health and ability issues, and I have seen none that integrate the many difficulties and rewards of doing so. I hope you make a book of these vignettes, as many can learn so much from them.

Cath Young

Canucker said...

Dream Mom, I came across your blog for the first time today. It is as though I were reading my own thoughts and feelings.

I took care of my severely handicapped son for 25 years. Like you mentioned, I dreaded the day I would have to make the life or death decisions. No parent should have to make those decisions, yet it is something we as caregivers have to face.

As fate would have it, my son Joe slipped away quickly when I wasn't with him. I was spared the decisions but was left with guilt that, after all those years of caring for him, that he died without me to hold him at the end. I think he chose it that way, because he knew I could never give him permission to leave. I loved him so much.

It has been over a year since Joe died and I wish I could tell you that life after is good. When you lose your purpose in life, it is hard to get up each day. Joe was definitely a blessing and an angel here on earth.

I plan on visiting your blog often - please give your son a big hug and kiss from me.

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