Wednesday, December 23, 2009

It's not you, it's me! Coping as a parent...

Heading into Christmas here shortly & excitement is in the air at our house. Ellie has the sniffles, otherwise, everyone is healthy & doing well! Before seeing Santa yesterday, everyone got their 2nd round of H1N1 vaccine, so we can wrap up that package & put a bow on it.
H1N1 vaccine - don't say that Momma never gotcha anything :)

Last week, Charlotte received her 2nd treatment (of 4) of 6 week intervals for Remicade. She was on every 4 weeks, then we stretched her intervals to every 5, now 6 weeks. Her eyes are holding strong.
I would be 1/2 way premature saying she's ecoli free. Her 1st test came back today NEGATIVE (yippee!) so we are thinking positive thoughts for the 2nd tests (need two back to back negative tests in 24hrs to be welcomed back into society - this has been going on since October 1st!).

Having e.coli 0157:H7 doesnt conflict with getting her remicade treatments for her uveitis (arthritis in the eyes). So we moved forward with treatment #2 at 6 week intervals last week.

Charlotte woke up red, hot, irritated & her eyes looked like this:
The eyeball was bloodshot. The entire eye area was red. They were not irritated, she didnt touch them, she was just tired & grouchy. That's different how? Not super unusual so I put her in the car & we headed to the hospital. Our treatment started at 830, so that meant we needed to get up & going. I didnt think much about the redness, but when we walked into the Children's Day Treatment Center, you would have thought I brought in a wild alligator.

"Um.... that looks like pink eye, (shuffle me down the hall w/ the red eye girl)...Lets have you go in here...." and they put us in a room w/ a glass door & told us to stay put. No weight/height measurements, no potty, just SIT & stay.

They called our Dr. who said, "well....???? it wont affect the treatment if she does have pink eye" & explained that pink eye (conjunctuvitis) can be viral or bacterial. If its viral, there's nothing you can do about it but it is highly contagious (which is why the nurses were freaking because this center is for chemo patients whose immune systems are already suppressed - just like Charlotte's). If its bacterial & she starts gunking up (technical term there!), then you can apply ointment. But at this moment, Charlotte was just red. No irritation or gunking. So we went forward. And the nurses wore gowns & gloves to protect themselves from a possible virus. Overkill maybe? You didn't hear me say that.

And after all was said & done.... I rushed Charlotte home, left her with Daddy to jet up to the school & participate in what was left of the Holiday Celebrations before Winter Break with Em & El. Came home to snack & got ready to head out that night with girlfriends for games & holiday merriment. And then the next morning...

I was wiped. Just plain wiped. No motivation for anything. I hit a wall & just wanted to lay in bed. Honestly it scared me a little bit. After 24 hours I was able to analyze that hospital treatment days affect me more than I allow myself to comprehend. And the added stress of Charlotte contracting ANOTHER virus, put me over the edge a little (at least for 24 hours).

We have called them pity parties in the past and admittedly, I have had one here & there early on when learning of Charlotte's battle with arthritis. But this wasn't a pity party & I have finally realized that its just plain STRESS of trying to float through this disease & on the way taking it in the chin with e.coli, febrile seizure, her shyness & trust issues of those in white coats. The list is a little longer. But the point is the same. Realizing that there is stress with having a child with a disease & learning to cope with that stress.

Charlotte was diagnosed at age two & is now 4 years old. Not one day is the same, nothing has ever repeated itself. We finally have the eyes under control (over a year of calm & counting) & the 4 affected joints haven't flared since the initial identification of the disease. And my realization is that while we are starting to conquer the eyes & the joints, after 2 years, I have not conquered learning to cope, how to deal, how to get ahead & how to deal with the now.

Learning to live life with a child who has a disease is a journey that I can talk about in the sense of my child & her struggles with the disease & its veins of affectedness. But as a parent, I am dealing right beside her, without letting her (or her sisters) see me sweat. And I guess this week, I broke a sweat & ran right into a 24 hour wall of "time-out." SMACK! Ouch...

And by the end of this post can I say that I had an aha moment & have it all figured out? Cha! NOT! Wouldn't that be a sweet bow to put on this little package?!

Learning to live life as Charlotte's mom is my journey that's ever evolving & full of learning! Heck just being a mom PERIOD is applicable to evolution & learning, but toss a child with a disease into the equation & it feels like there's more potholes in our road, for the child & for me as their parent.

I did conclude a positive baby step that I will apply: Next remicade treatment, next curveball at all..... drop everything. No double booking on hospital day, there's no going out that day, there's no going into the classroom, no going out to dinner. Nothing. I need to come home & decompress & definitely have an early bedtime. Maybe a glass of wine, maybe some meditation that night, a little of both, just some CALM, some QUIET and deep breathing with the conversation acknowledging, "Today was a stressful day. Its ok, I made it through. Charlotte's going to be ok. Tomorrow will be a less stressful day. Tomorrow is a new day."

And the red eyes? The next day they disappeared. Completely disappeared. I have no idea what that was about. Curveball averted. Tomorrow is a new day! And I will continue to stay open about learning to cope....

Have you read this before? This story was on the National Down Syndrome Congress website. Its not an apples to apples comparison, but as a mother of a child with Juvenile Rheumatoid Arthritis & Uveitis, I understand ...

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

© 1987, by Emily Perl Kingsley. All rights reserved. Reprinted with permission of the author.


Lisa Wheeler Milton said...

What a beautiful, thoughtful post.

I think you are an amazing mother to Charlotte, to all your girls, even when you face bigger challenges than most of us have ever had to encounter.

I also think you are very wise to make those stressful days less encumbered with commitments. It IS stressful. You deserve, and most likely, need to keep your reserves up afterward.

You are always in my thoughts, my friend. Always.

Brandi said...

Wow Erika, what a post. We are walking the same path in so many different ways. Reading your post made me feel like you were walking in my shoes; however, I wish I could handle it in the way that you do.

You have inspired me to think differently for the moment. Thank you for sharing your raw, honest feelings :)

Valley Girl said...

Erika...I am so pleased to have found you here in blog land. In this life experience we get to met people that help us see life outside of ourselves, our one, small view. Thanks for offering us your view. Your words need to be heard. Thanks.