Cards for Kaitie

October 20, 2011 at 6:58 pm (Uncategorized)

One of the most frustrating things in parenting is feeling helpless. Parenting a child with a chronic illness is an exercise in this sort of futility. So frequently there is very little to be done to ease your child’s suffering, beyond simply being there with them.

Our daughter, Kaitie, is fourteen, a freshman in high school. Remember those days. Friends are so important. The world is filled with ideals. You are so sure about everything—and yet so unsure about so much as well. Now add in that chronic illness, which has kept you out of school for most of the first few months, when new friendships are formed, when boys are asking girls to their first Homecoming Dance, when you bond over the share experience of learning a new school. Kaitie’s now missed all but two weeks of her freshman year so far. It’s that which is discouraging her, even more than the illness that is causing it.

I won’t go into all the details of Cystic Fibrosis or her latest battle with it (although I’m happy to share the story if you’d like to hear it). Right now, I’d just like to ask a favor, parent-to-parent, person-to-person. In addition to the prayers, warm thoughts and positive energy you all are sending her way, would you take just a few minutes to reach out to her in a more tangible way? Send her a card, a postcard, a note… just something small to help keep her spirits up while her body works so hard to get her back into fighting shape:

Kaitie Gallagher
PO Box 669
Snoqualmie, WA 98065

Thanks so much for your support and friendship—and for helping this mom feel a little less helpless!

~ Cathy Gallagher


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Notes from Another Dragon Mom

October 19, 2011 at 6:50 pm (Uncategorized)

Kaitie and Daniel on FB in the hospitalI don’t know if my thoughts are still too scattered to write anything coherent about this whole hospitalization / blood clot / never ending saga of Kaitie’s health. I always say that having a child with special needs comes with a lot of slow grief for the life you had imagined for your child which will now not come to pass. When you have a child with a terminal disease, it’s really the fear that gets you. Will she get back to what was normal before this episode? Are we looking at a new normal? (Scary what can become “normal.”) What if this is just the beginning of the decline?

You see, we know this disease will eat away her until it eventually takes her from us altogether. Not today, but one day. “One day” seems far enough away when she’s healthy, hanging with her friends, gossiping about who is going with whom to the Homecoming dance. But when that conversation is going on from a hospital bed, watching her laugh, my heart breaks. Just a little bit. Bit by bit.

I want for her to experience all the joys of being a teenager. I want it for her so much it steals my breath. School. Friends. Dances. Boyfriends. I even want the sorrows to be a part of her life. Heartache and bad decisions are all normal and something to learn from. When I find her weeping in her room, I want it to be because some boy broke her heart, not because she is just so tired, so sick.

But we don’t get what we want. We don’t get what’s fair or sane or right. We get what we get. And we deal. We make the best of what we have and look for moments of sunshine breaking through the darkness, and follow those rays back to the light.

I read an essay this morning from a mother of a little boy with Tay-Sacs in which she describes how parenting a child with a terminal illness makes you a Dragon Mom:

“The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell.”

Of course, CF isn’t the same as Tay-Sacs.  Thanks to modern medicine, more than half of those with CF live to see adulthood.  But the medial life expentancy of 37 is still way too short of a life. And it isn’t an easy journey. There are no guarantees. I don’t know what any of my kids would have been like if Kaitie weren’t diagnosed with CF nearly thirteen years ago.

The boys love their sister. The disease she fights is nearly as much a part of their lives as it is hers, especially now and especially for Raymond since he’s still at home. While we spent weeks at the hospital with his sister, he kept right on going. Suddenly, he had to get himself up, ready and to school, alone in the house. He worked up the audition piece for the school musical by himself and earned himself a roll, all while keeping things running at home and school. He even took care of Kaitie’s stupid chickens for her. He wouldn’t admit it but he was worried for his sister and missed her, too.

Then there’s the amazing girl that is Kaitie. Despite two weeks of IVs, respiratory therapy, meds, illness and a giant blood clot, she treated the whole experience like a really bizarre slumber party, which not only included me, her family and friends, but also the nurses, respiratory therapists, doctors, food service… anyone who walked in the door was susceptible to her. Whether it was good natured griping about being woken up yet again or matching wits with her brother (sarcasm and teasing run in our family) or private jokes just between she and I, she never lost it. She was never angry, never overwhelmed, never sad. She takes in whatever life throws at her, fighting what she can and not worrying about the things she can’t, even sparing a few minutes to comfort her mom, who is not so zen about things when it comes to her daughter’s illness.

Now, as I type this, she is still asleep up in her room. No longer in the hospital but still battling, struggling to make life as normal as possible under the circumstances. Sleeping more than a dozen hours a night, sometimes up to 20 hours a day, shows that her poor body is still working to heal her. Her arms, legs, stomach are all covered in a rainbow of black and blue, purple, green and yellow–bruises from the twice daily shots that will be a part of our lives for the next three to six months in an effort to allow her body to break up the blood clot that formed in her arm due to her PICC line.

I’ve been a parent for more than half of my life now, 22 years. It is the best thing about me. It’s frustrating and empowering, mind-boggling in every way, heartbreaking and joyous. And I wouldn’t trade it for anything in the world. Even now.

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Breathing in Shades of Red and Blue

April 29, 2011 at 7:05 pm (Uncategorized)

(Note: Be gentle. Poetry’s never really been my bailiwick — but comments are welcome.)

Looking back along a lifetime
Moments of memories held together by scars
Fear and hunger flavored with hope
Breathing in shades of red and blue

Dreams frozen in reality’s glance,
Shattered, shards festering, gouging
Reflecting sunshine, blinding hopeful delusion
Teasing, torturing glimpses of normal

Cursing, futile railing against the nevermore
Scraping promise’s tender underbelly
Smothering sweetness, precarious joy
Screaming feuds of time against fortitude

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Hard Lessons from the Hard Days with RA

January 4, 2011 at 1:12 am (Uncategorized)

A few days ago, in the course of conversation, my husband said that he doesn’t really know what my life is like living with Rheumatoid Arthritis, even though he’s lived right beside me through the whole thing. I try too hard to protect him from what I’m feeling, what I’m experiencing on those bad days. 

I never thought about it that way.  I guess I always figured, who wants to really know the gory details. 

Why would anyone want to hear about the truly horrible, agonizing days?  I thought, ‘I’m not sure I would if the rolls were reversed.’  But I’ve been thinking and, yes, I would.  I don’t want my daughter to hide symptoms from me in her illness so why am I hiding these things from my husband.  So, I decided to put down some of my thoughts and experiences in my life with RA… but I’m not sure what exactly he (or anyone else, for that matter) would actually want to know.

The pain is a given.  Pain that is so invasive and pervasive that you really don’t have many moments truly without pain.  The doctor’s pain scale goes from 1-10 but doesn’t take into account the difference between the constant, deep, throbbing ache in which you wake up and go to sleep, pushing it to the back of your mind because you can’t force yourself out of bed if you don’t–and the sharp, take-your-breath-away pain of using your hands for such wild and crazy things as folding laundry, carrying dishes or trying to open a water bottle.  It doesn’t take into account the frustration of not being able to do simple things – things that other people do easily… like type this note.

Hand in hand with pain goes the stiffness and loss of coordination.  The inability to hold onto things or even close my hand into a fist.  The embarrassment of constantly dropping things at work or knocking things over.  The clumsiness that costs both in replacement dishes and heartbreak when it’s something sentimental and irreplaceable.  The sad fact is that I have a hard time putting on make up or shaving my legs because fine motor skills are simply beyond my ability on some days.

Then there’s the life-stealing, all consuming exhaustion.  The kind that makes some days a thousand hours long because you literally can not pull yourself out of bed.  The days where you have to sit down on the floor of the shower because you just can’t stand up any longer; or sit clutching the edge of the tub in a cold sweat fighting the nausea from trying to push your body to do more than it wants to allow you to do, even if it is as simple as blowdrying your hair or getting dressed.

Medication is a nightmare… and a blessing… and a nightmare.  In the five years since this almost constant flare-up, I’ve tried dozens of medications.  Some work for a while and then the side effects (everything from damaging my liver to 24-hour-a-day vomiting to migraine headaches) make it impossible to continue so we move on to the next thing to try.  This year, I had several months when my team of doctors and specialists seemed to find the elusive and exiting combination of medications to work in not only stopping the joint damage but also almost completely eliminating the pain.  Then winter hit and it was as if that five years of trying and finally succeeding in getting some part of ME back… well, it was all just thrown out the window.  Apparently this is vey common.  Many people with autoimmune disorders need a different medication regimen during the winter months. 

Doesn’t make it any easier to live with though.

That brings us to the emotional toll.  The frustration. The anger.  The fear… I guess all of it really stems from the fear.  What’s to come in the future?  If it’s this bad now, how will I survive 10 years – 20, 30, 40 years — further into the progression of the disease?  I mean, there is no cure.  It’s a degenerative disease and will only continue to get worse.  The things this disease has stolen from me are already more than I am willing to give up.  I’ve given up so much of the person I am to this disease: dates with my husband, events with my kids, my massage career, my goals to write daily often get pushed out for weeks at a time, my independence, the ability to do even the small things to care for my family.

But even more than what it has cost me, what breaks my heart is the cost to those that I love.  My husband not only has to be the primary breadwinner because I no longer can work full time, he also has to do the shopping because I can’t walk on concrete floors that long; he does the laundry because it hurts my hands to fold towels or jeans… even t-shirts; he does the dishes because I can’t hold onto dishes without dropping and breaking them; he does the cooking… well, who am I kidding?  He’s always done the cooking.  It’s not fair that he is required to do so much more than his share – but he does them willingly in hopes that it will bring enough relief to me that I can put aside the RA, the pain, the whole world of misery enough to enjoy the time we can spend together.  And sometimes I can. 

Sometimes I can’t.

And there’s the toll on my kids.  I know they worry about me.  It is not supposed to be that way – I’m supposed to worry about them, not the other way around.  It kills me that my younger kids don’t even really remember a time when I wasn’t sick.  It kills me to see the brief look of disappointment when I can’t do something with them.  It kills me even more that the look is quickly replaced with one of resignation, acceptance even.  It’s just the way it is… but it’s not the way it should be, not the way I want it to be.  I grew up with an ill parent.  I know how hard it is to live with.

I’ve always wanted to be the type of writer, the type of person who can inspire people.  I think that’s why I try to shield those who love me from what I can during the bad days of this illness.  I want them to be proud of me.  Proud of how I handle it, inspired that despite the hard times, I always did my best to make their lives as happy and perfect as they deserve. Not the life that I can actually give them.

But what that actually does is push them away from the life I’m actually living.  When I try to protect them by hiding the horrors from them, I end up having to deal with things by myself.  I get so much satisfaction in being there for them, that it never occurred to me that I’m depriving them of the satisfaction of being there for ME.

I’m going to try harder.  I don’t promise I won’t keep pushing myself too far – or trying to protect my loved ones from the hard things.  But I will try harder.

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Why God Hates Me

October 14, 2010 at 8:45 pm (Uncategorized)

I’ve been told straight to my face that my child would be doomed to hell because he was conceived and born out of wedlock.  I’ve been told that my daughter’s Cystic Fibrosis was a punishment from God because of living a sinful life.  I’ve been told that a man who turned out to be a convicted child molester was safe and good because he was an active deacon in the church.  I’ve been told that by defiling my body with tattoos, I have offended the temple God gave me. 

So does God really hate me?

If you ask people about their god, whatever they may call him or her, they will always portray a superior entity of light and goodness and love. But many will then go on to explain away that idealistic view by telling you how only those who believe what they believe, who act as they act, who live the way they believe life should be lived, only those will be rewarded.

Radical Islamic followers commit unthinkable acts.  Extremist Christians condemn those who love in a way they deem sinful or attack those who choose to seek an abortion.  Terrorism, whether on a grand scale or individualized (bullying just isn’t a strong enough word to convey the damage it does), is just the more active form of judgment.  Silence in the face of even the smallest act of hatred is the same as if you actually agreed with it.

These are not the views of many, maybe even most, believers but unfortunately they often are the most vocal, the most active and the most extreme members of whatever their belief system may be.  And all that hate we condemn coming from people who feel differently than we do is met with more hate – the righteous hate of people who are convinced their views are the only ones that matter.

Many of those who really don’t agree with the extremist views may be afraid to speak out because they are afraid of the responding hatred.  But can you blame them for being angry?  When all you hear is that collective voice over and over: being told that you are wrong, bad, even evil, on a consistant basis, you might become a bit defensive, too.  Yes, the anger sometimes comes out just as judgmental and hateful as the act they are condemning.  Yes, they should be more understanding that YOU aren’t the source of that anger.  Yes, it would be nice if everyone would just accept one another, calmly discuss their differences and be shining examples of the love they say they are beacons of.

But this is the real world.

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October 13, 2010 at 8:41 pm (Uncategorized)

Writing is a compulsion for me.  I used to write before I even knew how to write actual words; I’d just scribble lines across the page in what I thought was cursive handwriting.  Filled tons of pages with whatever story was in my head at the time and even though no one but me could ever know what it said, I loved every minute of it. 

I wrote obsessively in school – a 1 page essay would inevitably turn into 10 or 12 pages.  In third grade I came in 2nd place in our classroom storytelling contest, not too bad considering how terminally shy I was at the time.  In high school, a writing exercise designed to develop our “voice” was submitted by everyone without names (only id numbers) on the subject, “The thing that most scares me is…”  I wrote 20 pages from the point of view of a man stalking a teenage girl.  The judge who read it was so concerned about this obviously obsessed boy, that he wanted to get help for the writer.  Luckily, my teacher recognized my handwriting and reassured him that I was not some crazy boy, not a stalker at all but simply a very “creative” writer… they were right about the obsession, though.  I never got past that obsessive writing. 

Writing became my vocation and my avocation.  In every job I’ve ever held, whether it was a writing job or something completely outside that field, I have added some sort of writing component to it – writing articles for professional journals, writing ad copy, writing lesson plans, even writing procedural manuals.  I’ve volunteered writing time to dozens of organizations and events.  I’ve even written things for people who didn’t even ask for my help (picture me frantically pushing written pages on unsuspecting people).

I can’t help myself.  It’s an addiction.  I feed that addiction in a multitude of ways: notes to friends, work emails, facebook posts.  But like any addiction, the glow has faded over time and for some time now, writing is simply the obsession of trying to feed that need and hoping to recapture the high.  I’m trying to find that joy again, the high of expressing myself in a way that makes my heart soar with excitement when I sit down at the keyboard, the creative rush that makes time disappear and the disconnect between my heart and mind dissolve.

And thus, this blog.  It is to be my free-writing place.  A place to empty my brain of whatever is clogging it, in hopes that I will then be able to write more freely and joyously in all aspects of my writing life.  I have no idea whether anyone will be interested in following this writing quest to recapture my joie de l’écriture but you are all welcome…

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