Wednesday, July 15, 2009

Over normalized?

Today I've been thoughtful, which is somewhat easy to do when there's no other adults around. Things bounce around in my brain... It started last night.

We took dinner to the field but when it was time to come home at quarter to 8 Marie wanted nothing to do with her car seat. I strapped her in, she fought. She wiggled, grunted, and scowled. She never vocalizes when she's mad, it's all in her eyes and they were angry. We were 20 minuets from home and even the Cinderella DVD did little to appease my tiny dictator. Of course, as almost always happens when she pitches a fit it moved into movement disorder territory and she had an episode. Clonus set in and her arms were rigid, her legs straight in front of her and her breathing got heavy and slightly labored. Her cheeks were bright red and she broke a sweat. I can't do anything. I can't say, "Marie, stop it". There is no "Marie, calm down". All I could do was drive.

She continued to have episodes lasting 1-5 mineuts sprinkled with scowling, heavy breathing and sweating. I got us home and put her on my bed with Josie for company and she didn't stop. She didn't stop in the bath, or afterwards getting lotion and pj's on. She didn't stop until I was on the couch with her, had brushed her very angry little teeth, given her meds, and hooked her up to the feeding pump. The girls called Daddy, still in the combine, to say goodnight. She stopped the moment she heard his voice on the phone. She had been in and out of movement episodes for over an hour.

Josie talked to him some, we had a good hug, and she put herself off to bed (thank you God for my big girl) and Marie fell asleep quickly. This always exhausts her. I was tired too. Hefting a stiff, angry, 25 lb girl with a nearly 9 month pregnant belly is not easy to do. My legs are tired, my arms are aching, my back is sore, but there's nothing to be done about it. She can't walk, she can't crawl, she needs me and so in my arms she is. There are only a few who know how to hold her her properly, so that she won't hurt herself when she throws her weight so passing her off is not much of an option.

And this is my life, and I call it normal. I have to stop doing that.

I have normalized Marie's care, our day to day, I look at the blessing of her. I focus on that to an extent that all the extra hours of care beyond what a normal 2 year old would receive just are normal to me. And they are, normal. If this is what it takes to have my Marie I gladly do it. It's just not life as planned, life as others do it.

Yesterday at gymnastics I was chatting with other moms about school starting soon and how it beginning at 8 dictates your life. I realized with clarity that I am different. School at 8 means waking at a certain time, breakfast, lunches made, out the door and to the school. Because we live in town there is no bus to catch, I must take Josie to the elementary. I mentioned that it will be interesting because I'll have to arrange Marie's meds and tube feeding around that new schedule. The other moms didn't say much after that. I forget I'm not like them.

I will never be the harried, overworked, soccer mom again, with an SUV full of healthy overactive kids. I have special cares, special worries. I have positining equipment in a carseat, I talked with hopsice about getting a machine to monitor Marie's blood/oxygen when she has an episode because I'm afraid she's not getting enough air. I carry an emergency dose of valium in my diaper bag along with tylenol and diapers. Josie says she want's to do soccer in the fall so I suppose I will be the soccer mom, but I will have to monitor temperature if Marie can manage it, balance practice with bolus feeding water, I will have a lot to figure out.

Our therapist mentioned that Luke and I are coping really well. Our marriage is put first and we work really hard to maintain it. He is my rock and the only other person who gets it. There's no blame between us, there's nothing to blame for. There's a huge higher incidence of divorce in parent's of terminally ill children. Wha...??!! Is that really my life??? It is.

I don't see myself as any different than I was, but things are different. Grocery store takes planning, I have drawers and cabinets in my new kitchen just for Marie's meds/bags/syringes/tubing/formula/masks and a special cabinet for spare feeding pumps and nebulizer machines. I plan our days around meds and feedings, I sit outside at swim lessons while all the other moms wait on the bleachers inside because Marie cannot tolerate the heat of the indoor pool. At this size, just getting off the floor with her in my arms requires planning. It's so hard, and for the most part I somehow ignore it.

Have I over-normalized this? I can't bear to play the poor me, my kid is sick, life is hard card. Because life is hard for everybody. Is mine harder than most? It feels like it sometimes, but doesn't every ones life feel that way sometimes?

I feel sometimes like I put on the brave face and let on that it's all okay because to me it feels like we are doing okay. Other people believe it. Then I feel hurt and wonder, how can everyone act so normal, Marie is sick!! But it's because it's hard for them to cope with, and I have to work not to resent them for it. Sometimes I am sick of taking the high road. Sometimes I am sick of all of it. Then overnights it's better and I'm ready to deal again.

How did my life get so complicated? Thank goodness for God's strength because sometimes I know it isn't me. It's Him acting through me, holding me up. I am not that strong.

Today the occupational therapist came and gave Marie a wonderful massage. After a year and a half Marie will finally allow herself to really relax with the OT and she loves the sessions. The OT also thinks she knows why Marie's voice is trembling when she talks, why she sounds like a little billy goat gruff. It's because her diaphram is not strong enough to give a steady push of air through her vocal cords. Instead it's weak and because of that we hear the tremor in her voice. She's not completely sure, but our speech therapist is coming on Friday and she should know.

How is that? Even though she seems so strong, and last night she was so wicked with that terrible fit in the car seat she is getting weaker. I feel my heart crack a little bit... but we'll work with it. What else can we do? And if I'm cranky at the grocery store perhaps this is why... because she's getting weaker and life goes on, and Jo has swim and gymnastics that make for busy mornings, and I have a baby to get ready for, and Marie is getting weaker, but there's still living that must happen even though I really want to just stop and cry. So I have to figure out how to place it, and deal with it, and not let myself fall apart because there are little people who need me. And life is hard. But it's beautiful.

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DESJ and Company said...

you spoke to my heart.

What you wrote is what I've felt every day of my life the past 11 1/2 years.


Mindy Pfohl said...

You know, you said all that Im' feeling right now. we've had mile stones, but we don't know normal. Likely, we are still facing mito. I've been the mom that every one got quiet as you talked about here. You put into words every thing I feel. you said it best though, Life is hard but life is beautiful. Hugs!

The VW's said...

Very well written! It all makes perfect sense to me. It's our's's's happy...and yet it's so not normal for most of the world.

It's what we have to do, so we do it with a smile on our face most days, because otherwise it would be unbearable. Some days I feel like this situation is such a gift and that others just aren't as blessed as I am. Then there are days when I ask, "Why?"

Hugs to you sweet friend! I'll be praying!

Michaelene said...

My friend, thank you for being so transparent and sharing this, your feelings, your life, Marie's story.
May you feel lighter today as our prayers carry your intentions, briskly, on the wings of angels to Him.
Big hugs, M...

Nena and Reese said...

Shan, I love this. I put a link on Reese's CB page to your post. I hope that's okay.

You have a beautiful way of putting things.

Much love and peace to you, Nena

Missy Ion said...

Hi- You don't know me - I got your site through Reese's. My son past away a little over a year ago from Mito. You are so right with your words. They are so true! Even now with Will gone...our normal is not "normal". And no - everyone doesn't have tough/bad days like those who care for these special children. There is nothing you could have compared this to for me before I experienced it myself - then and now - there are no words I can ever find to explain it to friends or family. Only those who experience it truly know. Thank you for sharring!

ANewKindOfPerfect said...

Oh Mama .... this post is SO what all of us moms live. Granted our situations are all different and unique, but all so similar.

This IS our normal. Our new normal. Our new perfect. Our new amazing.


clarissa said...

Hi Shan, wow! what you wrote is truth. sending prayers, love, and hugs to you all! love the pics of Marie, sweet angel!!!!!

RC said...

There is no normal, there just isn't. You and Luke and your family are doing it, getting through this life the best you can. And that, is beautiful.

Lori said...

I think the only normal we have is change. Our children change each day/week/month/whenever. We live knowing that change is coming, in some form or another, just around the corner. You think you are prepared for it, but you can't really be prepared until you get there (wherever it may lead). And, feelings are cyclical. With every change comes new feelings and trying to cope with the new normal. I hope this makes sense:)