Bits and Whatnots, Chronic Illness

Reasoning

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When my children were initially diagnosed with a chronic and potentially life threatening medical condition, I wanted there to be a reason.

I wanted to know it meant something.

I wanted purpose behind the pain.

I read. Researched. Read more.

I thought it was something I had done. Something, perhaps, unintentionally done while pregnant.

Something that happened during their births.

Something I had done wrong after I brought them home.

And I was almost okay with that.

Almost.

I mean, at least it would have meant there was a reason. Some explanation.

Something concrete I could get my hands on, perhaps even fix.

Turned out, it wasn’t any of those things and I tried to accept that I may never really know the deeper meaning behind the diagnoses we were living with.

But however I tried, I couldn’t quite swallow that. I continued to hold on to this uncomfortable feeling that I needed a reason. Would a reason really change anything? Would knowing WHY change our daily reality?

No.

Even so. I wanted it. I knew it wouldn’t change anything, but I STILL wanted a reason.

Through the initiation of becoming a “chronic mom”, I began to shift my focus just a little, and perhaps in the wrong direction.

I still wanted a REASON, but I wanted the reason to change something.

I wanted the reason to be beneficial to someone. Maybe something good can come of this.

I wanted the reason to make my kids into something exciting. Maybe they will change the world because of this.

I wanted to know that because of their suffering and pain, something about the future of primary immunodeficiency would be altered, something that would make this journey worth it.

Worth it?

I was selfish.

This is our life. This is what we’ve been given, and spending precious time trying to force my family into some box of reason is just a waste of life minutes.

I have great kids. We have a normal family. School, work, dinner, laundry, dishes, dogs, homework.

Okay, so sometimes they don’t do their homework.

And sometimes I don’t so much cook dinner as I do pour cereal into bowls and pretend it’s dinner.

And the clean laundry piles up in the baskets that sit in the living room.

But I mean, still, a fairly normal life.

We aren’t special. Just because my family lives with chronic disease doesn’t mean my kids need to grow up to save the world. They don’t need to start a foundation. They don’t need a Nobel Prize.

Trying to push some magical reason into the reality of chronic disease just reinforces the idea that their differences make them…..well, different.

They didn’t choose this disease. Why should having it push them into being somebody they really aren’t, just so I can have my reason?

It shouldn’t.

And that is how I have been approaching things the last several years. My kids are normal kids who happen to have lots of acronyms scribbled in their medical charts. I have a normal – albeit messy – house, and our hutch happens to be decorated with medicine boxes. Monthly, the kids miss school for an infusion. Six days a week, my son gets an injection. We wash our hands a lot. We meet with a lot of physicians.

They watch cartoons I find downright stupid. They fight sometimes. They cry sometimes. They argue with friends, and fall in and out of teenage love, and try to create their own unique looks. They rise, they fall, they win, they fail, they do things I find pretty fantastic, and do things that piss me off.

And life goes on. Days go by. They are growing up, just like everyone else’s children. I was at peace with things. (That peace was hard-won, by the way. Lots of tears and questions and prayers and dismal thoughts. I fought for that peace and clutched it to my soul.)

Until The Phone Call.

One of our physicians was involved with a study. An exciting study! A study examining diseases that affect the immune system, particularly autoimmune and immunodeficiency diseases.

They were especially interested in our family, because all of my children have the same two biological parents, and we have four affected and two unaffected in our family.

This evidently makes us a novelty, or as my daughter would say, “freaks.”

Everyone we have met with regarding this study has been over the moon about this. The rarity of it! A family of such LARGE SIZE! And FOUR AFFECTED!

These physicians and researchers, they talk really, really FAST and their eyes light up and they can barely stop themselves from squealing.

They told me this study could potentially lead to a cure in my grandchildren or great-grandchildren’s lifetime.

In a year, I will get a printout of the information about the genes in our family and where they went wrong and maybe even find out what caused the immunodeficiency. Maybe.

I signed the forms and gave the blood – we all did – and I want to think I did it for all the right reasons.

I believe I was willing because it could benefit my children, and their children. Even me, since I am on the “affected” list.

But after it all was said and done, I started back to an old way of thinking.

I began thinking, “Maybe this is it! Maybe the reason we are stuck with this disease is so we can be right here, at this moment, involved in a study that could change the future of treatment for CVID.”

I thought I had beat that Reasoning Monster.

It appears that all along, it was just waiting for the right moment to pop back up in my thoughts.

There is a part of me that still just wants my reason. Something to make this all worth it.

Do you know what’s really worth it?

The last seventeen years I’ve been a parent, raising good kids in a world that is sometimes not so good.

Spilled juice. Broken toys. Baby teeth hidden under a pillow. Brightly wrapped presents under a Christmas tree. Watching my children learn to read. Summer baseball games. Parent-Teacher conferences. Guitar and clarinet lessons. Halloween costumes. Choir concerts. Elementary school talent shows. Senior pictures.

I’m still glad we participated in the study. I believe a lot of good will come from it, and who knows? Maybe my grandkids won’t have to deal with monthly infusions because of the blood we gave this month. Maybe my children won’t have to watch their own kids fight illness after illness after illness because of this study.

Maybe. Maybe not.

Regardless, my brain divides and wars within itself.

I’ve had strange dreams about “Screening Protocol for Genetic Diseases of Lymphocyte Homeostasis and Programmed Cell Death.”

And I wake up, drenched in sweat and breathing hard.

I am simply left….

Reasoning.

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Bits and Whatnots, Poetry

A Snowpocalypse Poem

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Plucky yellow Smart Car
Struggling down my street
Intent on your destination.

Your fortitude astounds me
The entirety of your vehicle
Balancing in the solitary rut
Of a long gone snow plow.

Your determination as solid
As the mountain of ice and snow
Blocking my own driveway.

And yet, Oh! How you soldier forth
Focused on the effort
Nay! The NEED
To reach civilization.

Plucky yellow Smart Car
Sir, I salute you
As you fishtail by
Blackened smoke jetting from your exhaust pipe
As though you were hyperventilating
Perhaps you are.

Though we both know
The only human contact you will likely find
Will be the tow truck that comes
After you have frozen for three hours in a ditch
Just up the road.

Still, you tried
And so, Good Sir
I wish you
Godspeed
And raise my fist to the air for you
In silent solidarity.

Bits and Whatnots

Weight……what?

When I was 17 years old, I thought that I was fat. At just over 5’8” and 120 pounds, I was far from it, but still, that’s what girls did then. We talked about how fat we were as we ate Snickers and pizza flavored Combos at school for lunch, devised plans for being thinner, giggled about boys and made plans for the weekend. It’s just the way it was.

None of the girls I hung out with in high school were actually overweight. Some were tall, some were short, some had a petite frame and others were built with bigger frames, and some were just absolutely average.

But it seemed like the thing to do, bemoan our bodies. It’s what we heard our mothers talking about as they made plans for Weight Watchers meetings while sipping on a pink can of Tab cola, and ordered bizarre weight loss belt machines from catalogs.

It was a topic that cropped up in just about every conversation, because we understood it was really The Most Important Thing. We wanted to be thin so boys would like us and ask us out, we wanted to be thin so other girls would envy us, and we wanted to be thin so we would look totally rad with our tiny waists and gigantic hair and poofy sleeves in our high school dance pictures.

As a result, some of us would go days without food, some of us would use our babysitting money to buy boxes of little red and yellow Dexatrim pills, and some of us stuck our fingers down our throats after eating too much. That was okay, though, because it was the route some of us had to take in order to achieve The Most Important Thing. If that meant we occasionally felt shaky from lack of food, or passed out during cheer practice, so be it, and by the way, oh my gosh!, like isn’t Josh so cute in second hour? I think he likes me!

And it wasn’t every day we did these things, so it wasn’t like it was really bad, and in between the times we thought we were super obese we ate whatever we wanted so it all balanced out…..right?

Time went on, and I left my childhood home to marry my husband, and after a couple of years, we had our first child. I was thrilled to be pregnant, but was constantly cautioned by friends and family and even my physician to not let my weight gain get out of control. Upon learning our happy news, friends would hug me and say, “Congratulations!” followed by a whispered, “How much have you gained?”

It was a constant worry, even though hyperemesis meant I could barely keep down any food for the first several months. I was excited to become a mother but terrified of becoming fat, and every follow up at my OB/GYN’s office made me feel shaky and nervous to even get on the scale. “Yikes!” the nurse would say, and laugh. “You’re up by five pounds this month!” and I would feel somehow ashamed.

I weighed 150 pounds when my first child was born, and even though I had an emergency C-section AND a cholecystectomy at the same time, after a week in the hospital and with staples still in my belly, I went home and started trying to squeeze in time for sit-ups so I wouldn’t be one of those mothers who just let herself go.

Because really, beyond the health of my daughter, wasn’t getting back to my original weight The Most Important Thing?

I carried and gave birth to four children in six years, and my body changed. I could lose all the weight I wanted but the fact was that my hips were not quite the same and probably never would be, weight was carried in different ways and in different places and the truth of the matter was that I would never again have a 17-year-old body. I tried hard to accept those changes because life with three little ones and a baby was hectic, and I often felt run down and the house needed to be spotless and the children had so many needs, and I had to do every single thing just right so I wouldn’t somehow screw them up.

I poured over information in magazines about parenting because of course the people who wrote the magazines knew exactly what to do, how to make sure my children were not nutritionally deficient and that they were properly mentally stimulated and how to keep my husband happy and how to “have it all” and how to lose those last pounds of baby weight.

I felt even more pressure when my oldest child started school, because then on top of everything else, I had to make sure I was regularly volunteering in her classroom and was available for every field trip and made the best cookies for every program and took an appropriate amount of pictures of every single thing she did so she could grow up and have good memories and of course make sure she was not only keeping up with the other kids in class but also staying at the top of her class so she would be accepted into a good college later on and (take a breath!) still manage to devote the right amount of time to my 4-year-old because they are only little once and this time needs to be cherished and I mustn’t miss a moment and my toddler needed to be potty trained but not with too much pressure because that could cause problems later in life and we have to be so careful what we do when they are so little and also stopping every two hours to breastfeed the baby because everybody knows that what’s best and check his growth daily because he seems so much smaller than the other kids did at this age and why isn’t he crawling yet and sleep? Who has time for sleep? Not me, I can tell you that much.

As it turned out, there were also some medical issues with my children that hadn’t yet been diagnosed, and these issues for my sons included difficulty breathing due to asthma (doctors don’t like to diagnose it until after the age of two!), and an underdeveloped trachea and larynx and for my youngest boy an underdeveloped left lung. At first, because of his size, they thought it was cystic fibrosis but it turned out that it wasn’t, and once that had been ruled out nobody really had any good ideas about what to do so they sort of threw their hands in the air and sent us off to specialist after specialist until finally we found someone who could diagnose the multiple underlying reasons why my sons were turning blue and randomly unable to breathe.

Of course, once this mess all started, my worries about my weight took a backseat, although through days and nights spent in emergency rooms and pediatric hospital beds I would eat from a vending machine because I didn’t want to walk too far from my child’s sick room and even as I ate the Snickers bars I felt shame and guilt and worry in my gut that I would pile all the “baby weight” back on, but promised myself that if I did, I would lose it all again once things settled down.

Things didn’t settle down, and we had some rough years as the children were being diagnosed and going through more testing and getting sicker and more doctors deciding more things might be wrong and the more testing was done the more issues were found until we finally had some good, solid answers.

And there came a time the weight kept falling off my body without my even trying, and I put it down to stress or whatever and didn’t really care about the why of it all, so long as I looked good and my jeans size kept going down.

Now that my children are older and life is a bit more settled, I can look back at these times and wonder what in the world I was doing. I put such a ridiculous amount of pressure on myself to do every single thing exactly right, I’m surprised I didn’t have a nervous breakdown.

Perfectionism comes at a steep price.

I can look back at pictures of myself as a mom of four young kids and a steady weight of 140 pounds, and think DAYUM, I looked good!

I can also see a lot in those pictures that most people wouldn’t.

I see the rings under my eyes from sleepless nights, worrying over whether or not the slight sniffle I heard from the boys’ bedroom two hours before means somebody is getting sick, and should I get the nebulizer ready just in case, and is there enough gas in the vehicle to get to the ER if we need to go?

I see my ghostly white skin even in summer pictures, because I didn’t know I was anemic, and I thought every mom felt this tired and like my mother always taught, you have to push, push, PUSH yourself.

I see a woman whose hands shook almost constantly throughout the day, and who, when faced with any extended amount of time sitting down would fidget and bounce her legs with anxiety.

I see a young woman trying so incredibly hard to be everything for everyone, she wasn’t taking care of herself at all.

I see a young mother who was at her physician’s office at least every other month, receiving steroid shots for the hives she constantly was breaking out in, as a result of stress.

I see a woman who was probably so thin because she didn’t take time to eat breakfast, or lunch, or sometimes even dinner, and who often experienced such a violent crashing together of migraines and anxiety she would spend the night vomiting and crying.

I see pictures of ME, but a different me. I see myself not having a voice, because at that time in my life, every minute of every day was spent swallowed up in the goings on around me.

Over the last eight years or so, so much has changed in my life. There have been some heavy blows. I’ve been hurt. I’ve been strong. And I’ve begun to remember the person inside, the person who was sometimes lost in living for everyone else. As those things have changed, so has my body. I have gained weight. I have lost it. I have gained it back.

I have realized that I cannot teach my children to chase their dreams, if I don’t make an effort to chase my own.

And I have realized the things I once thought so important…..just aren’t.

Nobody dies if my house is messy.

Nothing really changes if my kids don’t make an A on every single project or report card.

It’s good for them to learn to lose as gracefully as they have learned to win.

I can’t be every single thing for every single person.

I matter.

I cannot change their medical conditions, so I cannot allow the stress of chronic illness overrun my life.

When life is slower, I enjoy more.

My weight is not The Most Important Thing.

My weight is a part of my life, yes. My weight matters, yes.

There are a lot of things in my life that matter. I cannot focus solely on my weight.

I feel like once I realized this, I felt as though I could give myself permission to let go of some of the other things that once seemed so important.

The unhappiest people I know seem to take one thing and focus their entire life around that.

But life is so much more than just one thing.

There is grief. There is sorrow. There is pain. There is weeping. There is hardship.

There is laughter. There is love. There is music. There is beauty. There is faith.

There is not just one Most Important Thing.

I decided quite some time ago that I needed to remove some of the plates I was trying to juggle and really focus on what was Most Important.

My marriage. I cherish my marriage, and a solid one does not come easily. It’s work. It deserves my attention.

My children. I cherish their individuality, and the time I have with them. I need to focus on being present, because the time they will be living
at home is becoming shorter by the day. They deserve my attention: not the attention that is left over after pleasing everyone else. Not what’s left after a difficult day. They deserve my full and focused attention.

Healing. In the last four years, I’ve lost my father and my sister. It’s okay to grieve. Grieving takes time. Healing takes time.

Relationships. Focusing on the ones that matter, and releasing the ones that hurt me. I don’t have to always be the person who kept hanging on. I can be the one that lets go.

Deciding to not constantly worry about my weight sometimes still makes me feel guilty. It’s just something that has been such a constant in my life, it seems odd to let it go.

Do I realize I need to lose weight? Yes. I am aware. Do I make effort toward this goal? Yes, I do.

I sit here and consider my life and my joys and my talents and my deficits and my hurts and those things that really make me, ME….the uncontrollably curly hair, the freckles, the fact that nobody will ever believe my dyed hair is any natural color because I can never just stick with one choice, that I love to read and find magic in writing words, that I love costuming and designing creative projects that challenge me, that I love Renaissance Festivals and loud, bouncy music, that I surprised myself by becoming so attached to my two dogs that I didn’t really want in the first place, that I fail at math, the joy vibrant colors bring to me, how much I enjoy the different seasons in Michigan, a deep and abiding fascination with all things Johnny Depp, the love for my family that is sometimes so overpowering it catches my breath.

Do you know, none of those things have ever changed when my weight fluctuated? Despite the number on the tag of my jeans, my core, my soul, has remained the same.

My weight is only one part of my life, and there are so, so many others.

I think about life as if it’s a box I found in my grandmother’s attic. Pull off the top….feel excited to see what’s inside.

An old journal. A handful of marbles. Ribbons. Old coins. Love letters. Discarded buttons. An odd earring or three.

Each item has worth. Each item has a story. Each item has a reason it is there.

But at different times, I might be more interested in the love letters, or the old coins. I might completely bypass the marbles, and twenty years later realize they had a fantastic story behind them.

Each item is not The Most Important Thing.

The Most Important Thing is the whole.

My weight is NOT the whole. It’s one of many valuable parts of my life.

And now I feel like I laugh more. I feel more content. I take time to really listen to the stories my children tell me about their day. I hold my husband’s hand more often. The opinions of others matter less and less to me as years go by.

There are things that are important to ME, and it’s okay if I spend time doing those things.

And if there is one thing I know for certain, it’s that my daughters will never have a memory of me jiggling in an olive green weight loss belt machine, so help me God.

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