Tuesday, July 19, 2005

I trip on crack in the sidewalk

There is no warning really. There is no learning from experience or expectation of history. In other words, I should know better but I'm always surprised. Because I think I know better.

Today was the appointment with the ostomy nurse. This is not to be confused with his appointment with his pediatrician last week for immunizations, or with his surgeon last week for post-op wound review, or with his cardiologist tomorrow for his heart. We hadn't seen his ostomy nurse since he was in the NICU. She's the one who taught the class on changing his "appliance" and ordered our first set of supplies. She's professional, she's smart, she is enthusiastic, but not cotton candy-ish, just not going to feel sorry for us, which is good. She's everything I want and need her to be, and yet she sets off a panic in me.

I hadn't expected it. I've been changing his bag for 2 months now. It's a fact of life, something that must be done, and although not my favorite thing. It is part of having my son so I try to do my best. I'm not blind to it. It would be hard to be. When it was hot and he was sleeping next to me in just his diapers, it wasn't just him lying against me but also his bag. And in pictures of him with just a t-shirt, the bag hangs out the bottom, so I try to crop it out, or just dress him in onesies next time.

We hadn't seen the ostomy nurse simply because we didn't have an appointment with her. I had one with everyone else, but not her. Meanwhile Jack has been growing and as he grows so does his stoma. While cutting a hole in his bag to custom fit over his stoma, I've been getting closer and closer to the line marked "do not cut above this line." So I made an appointment to see her.

After checking him out, she went digging around in her cupboards pulling out every size and sort of pouching system that there is. "These have a great flange feature." "These are like those but smaller." "These have a special closure at the bottom." "These have a special pour spout." "These are more one pieces, and these are the two piece systems." And on and on. Meanwhile I stared at the flange one and blinked back tears. I tried to paste a smile on my face, but I don't think it mattered because she was too busy finding ever more variety of bags.

It was the flange that got me. (Flange. Flange. How many times can I say flange.) The 'system' is huge, like it would cover his whole stomach. She didn't have the small size but wanted me to try the flange system and if I like it she can order smaller. The flange is like a large circular gasket. You cut out the hole, then put the moleskin on with the attached flange. Then the bag pops onto the flange. The flange lets you pop the bag off and put a new one one without removing the moleskin. It's not really called moleskin, I don't know what it's called. It's just the velvet-bandage part that glues to the skin. It has to have a really good seal so that stuff doesn't get on his skin and make a mess.

To me, it seemed a strange contraption. Large, almost the size of my fist. Circular. Looked sort of like an automobile part but in a fleshy tan color. And I'm supposed to put this on my baby.

It's probably a fabulous invention. So helpful in changing of bags. So efficient. But it was a horrible reminder that my baby is not normal. He needs this stuff. Even after his final surgery he won't be back to normal or good as new. He'll be missing half his colon and have some nasty scars on his tiny belly.

Over the 4th, my brother and I were both staying at my Mom's house with our kids and babies. His daughter is 3 weeks younger than Jack. After changing her diaper but before dressing her, he put his hands on both sides of her belly, put his face down, and gently blew a raspberry on her tummy. She laughed and smiled so he did it again. At that moment I realized I had never blew a raspberry on Jack's tummy. And I had never kissed his belly button or the long scar from his biopsy. And I'm his mother. If anyone is going to kiss his belly, I should have, at least a million times already.

Am I treating him the same as if all was fine? No. I don't let him cry long. I let him snack and wake me up frequently. When we're going out, I empty his bag so that it won't get super puffy and become noticeable under his clothes. And when someone else goes to hold him, I wonder if they're thinking about it. If they can hear it crinkle when they pick him up. If they are afraid of it. It. The bag.

I hate that bag. I do. Here it is keeping my son out of the hospital and I hate it. If it were just his heart having problems, you wouldn't see anything. He has to take his medicines but otherwise he looks fine. With Hirschsprungs, now we've got tangible evidence that there's something wrong. His stoma and the bag that covers it. A clear bag, usually with a silly sticker Janie put on it, and on the inside you can see his liquid poo. Pretty disgusting isn't it? It isn't pretty. Neither is a dirty diaper, but with that you just clean the child up and he's good as new. Clean and miles away from the poop.

Hirschsprung's is not an easy diagnosis. I don't yet have a 30 second elevator-ride explanation. Instead I usually say that my son has GI issues, and is on heart meds. I don't want to say Hirschsprung's Disease because it's not a disease but a genetic birth defect. And I don't want to say Hirschsprung's because they wouldn't know what it is anyway. To say that he's missing ganglion cells in his colon is not a better option. The more I explain, the closer I get to having to say something about his colostomy and I just don't want to. Besides, all anyone really wants to hear is how he'll have his final pull-through surgery and be moving his bowels normally and will grow up normal, the end. A happy ending. All the loose ends tied up with a pretty bow.

Meanwhile, we're not at the happy ending part but at the part where I've got to keep track of my sampling of these many appliances so that I can find the one I "like". Maybe I'll like it so much I'll brag about it to all my friends. Or maybe I'll like it so much that I'll want to get one for myself. Or take pictures of it. Or show it off at parties.

Okay. My own pity party must end. I can't afford to dwell in this place. Time is short. My baby is beautiful, alive, and relatively healthy. He's home, he's sleeping, and what more could I really ask for anyways? A final sigh, a sip of diet pepsi, a look out the window at the sunshine and blue skies. It's time for me to get back to myself. I can't let a little whitman's sampler of colostomy bags derail me. I can keep it together. I will give him a great life. And someday, I will look back at all of this and wonder what the big deal was.


Blogger getupgrrl said...

It IS hard. It IS upsetting. You have every right to feel tired and discouraged, even as you're being such a fantastic mother to your son.

And if you ever look back on all that you've endured and think it was "no big deal," I will ask you for some of your meds. Because that would be some goooood stuff.

4:22 PM  
Blogger Jen P said...

Pazel, you show such great strength, but like Grrl said, it is HARD. He is your son, he is so special. And it hurts to see him needing these things.

You're an amazing woman and have an amazing family.

Thinking of you and wishing you the best.

8:26 PM  
Anonymous Lisa from Palm Desert said...

Your post brings up memories for me from 16 yrs. ago when my son was born with an opening in his abdomen and also missing the bottom piece of his sternum. It took five major surgeries for him to come home 3 1/2 mos. after his birth. He did not have a colostomy, though that was always a possible complication. It was your comment of nasty scars from future surgeries that I can relate to. After Justin came home, I was at the grocery store and someone commented how cute he was. My siser-in-law piped up and said "He's perfect." I was embarrased that my first thought was "no, he's not-he has no belly button, his nipples are offset from all the surgery and his chest and abdomen are a battlefield of scars!" Looking back, I feel ambivalent about my thought. We are a society very focused on perfection and appearance, even our precious babies are subject to this scrutiny. Sure, there are worse things, but I think you are so normal in your reactions to the bag. Or 'it' as you say. You are finding a way; thank you for sharing your story. For me (now), Justin's scars, offset nipples and sunken spot where his sternum should be are just 'normal.' Perfectly normal. :) Truly, they are his battle scars. And sixteen years later, I'm so proud of the survivor that he is. I am a lurker by nature, hope this post is appropriate even though it's my story.

10:15 PM  
Anonymous deborah said...

Ah, Pazel. You are such a wonderful, compassionate and sensitive Mommy. And Jack is one lucky little boy to have been paired with you.

I continue to be in awe of your strength.

4:53 AM  
Anonymous Michelle said...

You are amazing. And grrl is right..you have every right to be upset by it, it is something upsetting on your precious boy.

I think you are doing a wonderful job.

7:43 AM  
Blogger Cat said...

I not only agree that you have every right to be upset: I think that it is healthy (even if unpleasant) to be upset by all this.

I suspect that one of the best gifts we can give ourselves AND our kids is to face that bad stuff is bad--and that feeling bad about it makes sense. And that's true even when the good stuff is more important, or even when you know someday you'll be past it, or even when you see that it could be worse, or even when you also feel good things too-- or or any of those other "perspectives" that don't necessarily change the bad stuff.

Yes, it sucks that you and your family have to deal with this crap--literally and figuratively. It's not right; it's not fair, it's not all fine all the time. And I'm sure your son will in the long run be better served by a mother who didn't lie--to herself and to him-- about how hard it was.

Sadly we often push ourselves and each other to pretend and to erase the negatives, or to drown/hide them in the positives.

I admire you for not doing that. If and when you find a place and time (temporary or permanent) where you feel more okay about the bag, fabulous--we'll all be cheering. But what you and Jack are going through isn't fabulous all the time right now... and he's lucky to have a parent who doesn't bury everything but the pretty feelings.

I do hope you find some of this less upsetting eventually--but because I wish for you to be happier, as you deserve, not because there's anything wrong with disliking both the symbolic and practical stresses of the bag.

9:20 AM  
Anonymous Menita said...

Darling Pazel, this post made me cry. Not out of pity, but because the immense love you have for that beutiful boy of yours came through in every sentence. Lucky boy, in all respects but one.
I am sorry that things are so hard right now.

9:30 AM  
Blogger Jen said...

Oh, Pazel, it *IS* a big deal. And you're handling it as well as humanly possible, human being the key word. If you weren't upset by it that would be pretty worrisome, actually.

Every now and again you need to let yourself have the time to feel what you really do feel. And we're here to listen and empathise and wish we could do something to help.

Listening, empathising, and wishing...

9:36 AM  
Blogger Erin said...

Hi, Pazel. I just wanted to say what the others are saying.

You have every right to be upset. When there's something wrong with your child, there is nothing harder or bigger in the whole world.

9:37 AM  
Anonymous Anonymous said...

Hugs from a former ostomate... I had occasion to hold a tiny baby, the daughter of a friend of a friend, who had a cleft lip. Of course, this was the first thing I noticed when I looked at her. But as I held her, I stopped seeing it and all I saw was how perfect she was, anyway.

If anyone has a problem with the ostomy, well, it is their problem. And they suck.

bec :D

10:37 AM  
Anonymous Mandy said...

All my love, friend. To say this woudn't be easy on anyone is an understatement, as is saying you are doing a fabulous job.

11:25 AM  
Anonymous Julia said...

Pity parties are part of it. Many parties, all with different themes. The parties are healthy. Needed. Necessary.

It is hard having a child that is different. It makes you a different mother. Not better, not worse. Just different. And that is okay. Tummy rasberries or not.

I suspect if your cutie had only the heart problems you would have the same struggles. My kids look healthy (they are not) and since we've lost the obvious signs of things not being normal developementally (son didn't walk until 25 months and daughter used a frame medical walker) they are able to blend in better. But you know what? It doesn't feel any different. Most days I feel like an imposter in a world of healthy children, when mine are not. But that is part of trying to give them as normal childhoods as possible in between therapy, doctor visits, evaluations and meds. I'm fairly open about their medical and educational challenges I think part to help me deal with the underlying voice in my head "but they're sick! they'll need transplants! it sucks!"

So, you can and you will do whatever you need to do and while you are doing that there will be times when your reality collides with the longing in your heart, for no meds, no bags and noticable differences. But you'll get through them and you'll be the best mom for Jack while you are doing it.

8:28 PM  
Blogger Jody said...

It is hard when there is something wrong with your baby. Your posts are so honest and bring back such hard memories for me.

My son was born with severe left clubfoot. Only 12% of all clubfeet are as severe as his was. He spent the first 9 months of his life in either a cast, splint or shoes with a bar between them. Tub baths were rare, as he always had a cast on.

Starting at 1 month of age, he slept with a machine on his foot that constantly moved it back and forth to keep it limber.

When I look back at his pictures, his foot is always cropped out of them, or the brace covered in a sock.

I will never forget the day we had some friends come over about 3 days after his birth. One of my friends husbands came over to see the baby, and he actually took off Quinn's sock so he could see the deformity. I ended up locking myself in the bathroom with the baby, crying, for the rest of the night.

He is almost 5 now, and his foot is completely corrected, but it still hurts to remember those times.

Thank you for your honesty! As grrl said, it is hard and it is perfectly normal to be sad, tired or just plain angry that this has happened to your son.

2:11 PM  
Blogger obabe said...

I'm not sure how to say what I'm thinking, but I think of you often and am sending you a long distance hug. (from a total stranger, nonetheless). fwiw, I would tell people who asked what was wrong with Benjamin when it came up that he had surgery at 9 days old, that he had HD, it meannt he didnt have nerve cells in his colon to poop, and that was that. health care professionals (my ob, etc) know the questions to ask, and everyone else just says something about how great he looks now. Your time will come too. You and Jack (and your hubby and daughter too) are all heroes. Don't forget that.

9:27 AM  
Anonymous Andrea said...

Hi. I'm an infrequent lurker--I wanted to post in reply to this. I hope you don't mind.

My little girl isn't sick--but she's different, and people notice and comment on it. She has some undiagnosed dwarfism condition, so she's tiny. People generally don't understand what I mean when I say that until they meet her, at which point it's glaringly obvious. She's 19 months old and the size of an average 8 month old, already a good five inches shorter than her peers. People ask me how old she is, and when I tell them, there is either a pause of dead silence (when I can pracitcally hear them trying to figure out what to say) or something like "what's wrong with her?" or "why is she so small?"

I struggled for a long time with the word "wrong."

The doctors after the ultrasounds all used it, the geneticists used it--either "something's wrong" or "nothing's wrong," but still, the word "wrong" got bandied about a lot. And no mother wants to hear the word "wrong" in connection with her child. It's strange. I think if she were just really small and it wasn't he result of a genetic condition and there were no other symptoms, it would be so much easier to handle. As it is, it's a symptom of something "wrong," and it scares me and makes me defensive even when I try hard not to let it.

It's not the same, I know, but I empathize. I do know what it feels like to wonder what other people are thinking, or to know what they're thinking when they decide to tell you and it's nothing nice. I know what it's like to be blamed for something you could never have prevented because it is, of course, always the mother's fault. Adn I know what it's like to have this perfect little person who you love so much and their essential "rightness," but this word "wrong" just gets plastered all over them somehow, like a stain you can't wash off. I know what it's like to be scared to treat them the same as other kids. I co-slept with Frances for a long time (9 months) because she was growing so slowly and I'd heard it helped with weight gain and I was petrified to get her to sleep in her crib in case she started to grow even less.

It's different for everyone, I know, and we're on different journeys anyway, but I wanted to tell you that it's getting easier. Easier for me to see this as just another part of a wonderful person, like her eye colour or the way she points her index finger at things or how she scrunches up her face when she tries a new food. It's not an easy part; it's not easy for me and it won't be easy for her, but it's not "wrong" either.

I don't know if this is making any sense or helps at all or if you're strangling me mentally while you read this--but I hope you are able to reconcile this someday, in whatever way makes sense to you. And in the meantime, struggling with the word "wrong" and all its ugly connotations and the practical difficulties in your daily life is very hard. I don't think anyone manages to always keep it together.

8:32 AM  
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