Monday, October 20, 2008

Bad Things Happen To Good People... and Other Things The Parenting Books Don't Tell You

Every time I head into the hospital with her, no matter how minor the test or procedure, it is very difficult. Everything comes flooding back and the very *realness* of her condition is front and center. It is so hard to sit there and not just put on a brave face for her... but pretend that it is all fun and exciting... while I am literally pushing back tears. I know that our situation is not the worst case scenario. Hell, most of the time we don't have the sickest, most disabled, kid in the waiting room. I understand that in many, many, ways we are extremely lucky. Kid is alive and well. She is developmentally fine, and growing and learning as she should. She didn't suffer any damage from her seizures and seems to have no side effects from her medication. We are very blessed. And yet we have a sick kid (for lack of a better term). Something is wrong with her and we don't know why, or what really, or how to fix it. No one does. We just wait and hope, and wait and hope, and educate ourselves the best we can.

While her condition is (hopefully) being managed with her medication... the very medication itself is a twice daily reminder that something could go wrong. When you come home with your perfect little baby you cannot be prepared for a day when everything changes. It's outside of your comprehension. Until it does your child's health and progress can be quite greedily seen as your right, a result of your efforts. Then one day all of your assumptions vanish. The very ground you stand on falls away and you are left in someone else's spot trying to make sense of how you could have flip flopped so quickly from one side to the other. From the happy, proud, mother of an *advanced* child to that of a disabled one. To be transported, literally overnight, from someone who would have pitied (in the kindest way possible... of course) a mother in my circumstance, to one who is pitied.

28 comments:

Renee said...

I hope it helps in some small way to know that you have a lot of people who are praying and thinking of all of you every day...I'm not trying to draw comparisons between our two situations but I can completely relate to what you are saying about going from being the one to pity others to being pitied....its a tough pill to swallow and its a mix of being angry and sad and you can't help but wonder 'why me?' at times.....ALL of your feelings are completely legitimate and understandable...and even though your situtation may not be the worst case scenario-its still your situation and as Kid's mom for you, at this moment it is the worst case scenario because as the old saying goes-sometimes its the not knowing that is even more difficult to live with. I can only imagine how tough it is to have to wait and hope and not have a complete diagnosis...I'm keeping my fingers and everything else crossed that the tests come back normal, Kid can go off the medication, and that she never has another seizure again.

By the way, did you ever get an answer to Kid's vomiting issue? Just curious....

We will continue to keep the Furious family in our prayers and sending lots of hugs and good wishes your way.....

Out of Hand said...

You know I know how you feel. Kind people ask how A. is doing and it makes me think of it. I hear sirens far off in the distance and my stomach drops. Someone else mentions a siezure and I want to vomit. And what does this mean for the rest of his life? I hate asking questions because I fear the answers. MY faith rests in God and honestly knowing that only HE can give me peace that passes understanding sometimes is all I have to go on. I am thinking of you and praying for you and glad to hear good news about the EEG. Please keep updating on the sich...

Haley said...

I'm at a loss for the words that in any way would live up to the large hug/ plate of cookies/ wash and fold your laundry so you and kid can watch cartoons together/ drink a bottle of wine with you smorgasbord of good stuff I'd like to send to you. But know that the smorgasbord is there.

cos164 said...

I think it is unnamimous that all your readers are sending positive thoughts your way.

Mrs Furious said...

Haley,
if I weren't giving a hippie school my last dime I'd fly you in!


Michelle,
Thank you.

Out of Hand,
I know you know. And YES the sirens. Once you've had them coming to your house you never hear them the same way again. I pretty much have a PTSD response to them now.

Renee,
"sometimes its the not knowing that is even more difficult to live with"
It's true. It really is the hardest part. You can come to terms with nearly everything if you have to... but when you don't know what that is you can't move forward.

And we don't have definitive answer on the vomiting either. Just to keep tabs on it and track what she was eating before... in case it is a food intolerance.

Julie said...

I wish I could send you a TJ chocolate croissant.

Whether your situation is the best or worst for the epilepsy, it all sucks that is going on for you all. You must always be waiting for the shoe to drop while others live blissfully unaware that anything can happen anytime. Sorry;( I am going to hug my children now.

SK and Family said...

(((hug)))

I will continue to keep you all in my prayers, that the medicine has done it's job and that the seizures are permanently over.

:)
Kat

cos164 said...

Regarding the vomitting... There is a possiblilty that it is this weird virus going around. Ever since the day we left for Charleston, G has been randomly having random diarhea attacks. Poor kid explodes in his pants, is fine for a week, then it comes back again and the cycle starts over. Took him to the Dr today and she said there are 3 prevalent stomach/intestinal bugs that are rampant this time of year that can cause that. Something to think about. Hopefully it is just something minor like that.

Missives From Suburbia said...

That was so perfectly worded and it flawlessly mirrored my own feelings for the past two years.

Answers. If I could wish for anything in the world, it would be answers for every parent in the world who lies awake at night or stares at their child in the waiting room and wonders.

Mrs Furious said...

Oh Deb... I hope you get some answers too.

Mrs Furious said...

Julie,
Oh God knows I'd eat it!

although I'm back on the plan... for real this time.


Kat,
Thank you.


Michelle,
hmm.... that's good to know and keep in mind.

CRUSTYBEEF said...

I am praying for you.. And can't imagine your emotions being a mother myself...
I'm waiting for the medicial term from my friend on her son..I just wanted to let you know I haven't forgotten. :)

E

Mrs Furious said...

Crustybeef,
Oh thanks. Take your time... I'll still be here ;)

penelope said...

(((((big hug)))))

Elizabeth said...

Hugs and I'm thinking of you guys.

Heather said...

Thinking of you and hoping the test is perfectly normal. Epilepsy runs in my family -- It's understandably difficult to deal with.

Lori said...

Wow,
Youv'e had a day! So proud of you for staying on plan through all this STRESS. You all are in my prayers. May you be given the answers you need to live in peace.
Hang in There!
www.mirrorx2.blogspot.com

katieo said...

OH I'm so sorry. I've done the pretending too; talking up the medical side of things and then running to find a place to cry. I'm not very good at it actually.

It is SO hard when waiting and hoping is all you can do. I hope for the absolute best for Kid. (too bad the Isrealites didn't have any epilepsy stories...)

(did the tooth get pulled?)

Kiki said...

Bad things do happen to good people, I can confirm that! What makes me stronger everyday is how I react to that bad thing. Some days I don't do so well...I cry in my car when I'm alone, drive to the beach, look at the unending ocean and wish for so many things and most of all that there was just an answer....because isn't that what we all deserve, a resonable explanantion for why things are the way they are?

Kid shouldn't have to suffer, not one more minute, you shouldn't have to worry that each symptom is a sign or that your in laws don't "get you". You are lovely, Kid is a wonder and I wish only the best things for your sweet family today!!!

I am reminded of Kid taking my hand and asking me to board that boat with her...while I'm asking for a miracle fo my own, I'll be adding Kid's name to that list!!!

Sending you lots of hugs today...

Supermom said...

Of course we are sending all these wonderful vibes and wonderful thoughts your ways. And kids way!

I know its hard to put on a brave face. All of my kids have been in the hospital for some reason or another and me being a mom tries to hold everyone together and I just end up in tears. I know there is no comparison with situations, I just want you to know it's okay to NOT have on your brave face.

I look forward to seeing everyone again! We are having a Game Night here October 25th, if you'd like to come. We are starting at 6pm-until. There isn't going to be a big crowd this time because goober me (and hannah) planned it on the Saturday before Halloween so people have Halloween Festival type plans.

Anyway...off to enjoy coffee and check on the clothes in the wash.

Michelle :)

Mary Poppins said...

i can just picture you with your brave face on at the hospital. the strength that you give kid is a huge blessing to her. and when you write so poignantly about it, it's a blessing to us as well. we're praying for the best outcome for kid and your family.

Gigs said...

If only we had the answers. I know. I have times where I just sit and cry over K. The not knowing is the hardest part. Is my child safe? Is my child happy? Is my child going to be able to live the life I dream for him? And all we can do is muddle through, doing our best. And wonder if it's enough... I feel for you, and all of us advocating for our children. It is definitely the hardest and most emotional job. Thoughts and prayers with you guys always...

Staci said...

Keeping you all in my thoughts & prayers. :)

Andrea said...

there are no words I cant even express how I feel I know your children are your world and you would do anything for them...thinking of you guys!

Mrs Furious said...

Again thank you, everyone, for your thoughtful, kind, generous comments. I really do appreciate all of your friendship.

Mon said...

omg, please tell you want to lose weight because it's just going to make you feel a little nicer, not in a, I'm fat and think about eating not eating all day, kinda way.
I was imagining an overweight person when I read your first posts!

I spent 20+ years with food issues and finally gave them up. Now I would like to lose my pregnancy weight but I no longer care enough to make it an issue. Life's too short and you and I are worth too much to make it so much about food/weight.

Mrs Furious said...

Mon,
Hmm I'm not sure why you are commenting this on this post. But I do not have an eating disorder. I gained 52 pounds during my last pregnancy and hoped to lose as much as I could. For the first time in my life I was "ready" to change how I felt about myself. I never lost more than a pound or two a week but by the end of my journey I had lost 69 pounds bringing me to my lowest adult weight... not an underweight weight just leaner than I had ever been. It turns out exercise works ;) I never felt better (I've looked better... cause let's face it I've had kids).... not just emotionally but physically. I was proud of myself for breaking through a life long barrier that kept me feeling "less than". I actually reached a weight at which I was satisfied. This is not a never ending quest to find some elusive thinness. I maintained at that weight easily while exercising about 4-5 hours a week. Then I had some stumbling blocks and stopped exercising for about 3 months. I'm now just trying to get back in the grove where I can be back at my personal best (not just weight wise but fitness) and so that food really can become a non-issue again. Even "dieting" I eat a minimum of 1800 calories... and when I'm maintaining I eat over 2200. So I'm not starving myself. I would like for my kids to grow up with a mother who models good health and balanced food enjoyment... who NEVER asks if she looks "fat" in something. That's my goal.

Mon said...

Hi chook,

I'm so sorry, I hit the wrong comments link. *smacking head forociously*

Anyway, I just wanted to reach out and say that you look great, please don't fret, life's too short, blah, blah. lol
You just look so slim I couldn't believe you were blogging about weight and taking photos of 'fat'.
All the best, (special thoughts for your daughter) and sorry again about my stupid hand that doesn't know where to click...

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