July 12, 2008

I have no jazzy title to this post at all. Maybe something like, LIFE SUCKS, but, hey, I’ve gotten some remarkably kind and hopeful emails from many of you, so I don’t want to scare anyone.

Our daughter, Molly Kate, has been in the Barrow’s Neurological ICU since June 22, the day after our son’s wedding. Since then, she has gone through two surgeries, a major infection, a dangerously low white blood cell count (2!!!) and is facing a fairly big brain surgery on Tuesday, if “all goes well“, which is always a dicey thing to write at this point. On the optimistic side, she is eating well (no feeding tube!), awake most of the time, and her pain is diminishing. All the medical hoo haw is complicated and frankly I don’t want to get into that shit here. I came home for two days to wash clothes, get some sleep, water dead plants, and pretend I can walk around without paralyzing fear and anxiety. And to not hear endless beeping of monitors.

We are not strangers to this situation. Molly since birth, has had many surgeries for her condition, hydrocephalus. It’s a bitch. I have learned enough about our completely backassward and negative health care system to know that it’s in complete and utter crisis. I have learned that most doctors just want to cover their ass and will try to avoid family members and their questions at all cost. Hey, who can blame them? When their malpractice costs are above $200K per year, they have lost their passion. I have learned that you have to advocate constantly for your loved ones and be demanding and assertive 24/7 when they are helpless. But all that stuff doesn’t matter right now. I’ll deal with those issues later, probably in a future post that will make you groan and wonder what it has to do with food.

On the bright side! Barrow’s is one of the premier “brain” hospitals in the country - we are lucky it’s only two hours away, and takes our insurance. Her nurses are, for the most part, extremely, wonderfully good and compassionate. Her original surgeon, who has performed some 50 surgeries on her as a child, is back on the case, coming in from Utah to take care of “his girl”. I feel this is something of a miracle, because of his guidance and relationship with our family, he has led us away from a truly dangerous situation to a real solution. We have friends and family who pray and help - my dear sister flew in from San Francisco and helped me in a way that only she understands. Our other children are so helpful and make her laugh - even our son in Iraq calls every chance he can, which is no small thing. We have a powerful and loving circle around us. I am truly, deeply thankful.

And, I hear from some of you that have learned of this situation. Your emails and posts move me very much. Sometimes I think that a complete stranger, who has no connection with us at all, sending prayers and good wishes, is the strongest indication of human…goodness and compassion. It is surprise and wonderful revelation
Thank you.

So, I’ll end with that….otherwise this post will get stupidly emotional and really, I just wanted to let you all know what’s up and to thank you so much.

16 comments:

Torina said...

Hey, I normally read your blog for the food. I have been lurking for a few months. My daughter has some pronounced special needs so I can only relate too well to our completely dysfunctional medical system. It is hard enough to deal with the emotional trauma of a sick or disabled child, not to mention all the bureaucratic BS that goes along with it. So stressful. I hope your daughter's surgery goes well. And you are able to get through the muck and mire of another medical incident with most of your sanity. It is hard. And complicated. And scary no matter how many times you have to do it. I feel for you and your family. May peace be with you :)

Peter M said...

Thanks for taking some time to write but nevermind us...go be with your family and tend to more important matters.

I'm rooting for your daughter, I'm sure she's a fighter.

Catherine said...

Hey - I'm glad you checked in, too. I wish I had known before, but I have a super special retro-action plug-in for well wishes and good vibes; please know that a metric ton of each is being sent your way as we speak. I don't envy you, navigating this broken and awful health care system. Holy crap, what a disaster. I'm so glad you have loving people around you. Be as well as you can be, and I will be pulling for you!

JennDZ - The Leftover Queen said...

Wow Catherine, it is so hard to read what I am reading, let alone live it, as you and your family has done with absolute grace. I am doing what I can to blast out some good vibes to you and your family. If your daughter is anything like you, I am sure she is a fighter. I am thinking of her, you and your family.

I know how difficult it was when my mom had lymphoma - all the rigamarol you have to go through with the health care system here. I don't know how you have been doing it all your daughter's life. Amazing, Catherine - you are really something else.

Our best wishes to you and yours - and lots of hugs!

Emiline said...

Get better soon Molly Kate! You can do it girl.

Nikki Miller-Ka said...

Thanks for updating us. You take care of you and He'll do the rest. Your fellow foodies are rooting for you and yours. For sure.

Prudy said...

Catherine:
I'm so sorry for all the difficult things that you are going through. I hope the wedding was able to be a joyful ocassion. I hope your daughter can keep her spirits up. I will definitely keep your family in my prayers. Hang in there.

Lisa said...

Oh, Catherine, I am so sorry for all you've been through! I will continue to pray for Molly Kate, you and the rest of your family. May the support and love of your family get you through all this.

Colleen said...

my prayers and thought are with you and your daughter and whole family. don't forget that your Father in Heaven and Jesus Christ are always there. Have faith in Them. i do. i send you smiles and hugs and good thoughts. take care of yourself.

Colleen said...

my prayers and thought are with you and your daughter and whole family. don't forget that your Father in Heaven and Jesus Christ are always there. Have faith in Them. i do. i send you smiles and hugs and good thoughts. take care of yourself.

Leah said...

Catherine, I know you are in full blown 'mom mode' right now. The worrying is just exhausting and I'm glad you're taking a little break, even if it is to do laundry and water dead plants.

My mom always says that no matter how old her kids get, she's only as happy as her least happy child, so I know right now that you're feeling pretty down. I'll be thinking of you and your daughter and praying for the best possible outcome.

Dhanggit said...

Hi Catherine, thanks for thinking about us..its true that we miss you a lot but as peter say..dont mind about us..i'll be praying for your daughter..

big kisses my dear

ntsc said...

Having spent more time than I care to think about as a patient in a Neurological ICU 23 years ago, my thoughts are with you and yours.

Deborah said...

Catherine - my thoughts and prayers are with your daughter, you and your family. Take time to be with your family - it sounds like you all have a great support system together!

Molly-Kate Wilkinson said...

Okay, so I know for sure that it's an insanely crazy time to even think about writing a post on my mommy's blog, but I gotta do it FOR THE TEAM! So, here I am at 0400 bright awake, reading some e-mails (doing my best to try to catch up on a bed-ridden 26 days in the Neuroscience Intensive Care Unit), and still try to be a "normal" 20 (almost 21 year old female). I have read all of the posts that you all have left on my mommy's blog, and I'm seldomly held my tears that I refuse to let out, (you catch my drift). Come on guys - I know that you got it in you! As many of you wrote, prayers are what help to pull us through the shit that some of us just have to deal with. Yea, BELIEVE ME, I know that it's a pain in the ass, but someone's gotta do it. Plus, if my having to go this kind of nonsense ever so often, keeps my loved ones and friends away from the drugs, away from surgeries, away from countless days listening to beaping machines every fifteen minutes, the same damn questions being asked to you every two hours (okay...you get my point), I'll do it in a heartbeat! I'm not sure if my mommy neglected or has told in past posting, but I've lived with hydrocephalus since birth, so I don't know totally what it's like to be on the other side. Please realize, I'm not saying that I'm in the dumps 24/7 and have no life outside of the medical loop - believe me, you, I gotta it all going great! This last hospital stay (the second longest stay I've had to endure in my entire life) - HELL, it's been almost a whooping 21 years - yeah, Arizona residents get ready for Molly Kate to hit the town and all of Arizona beginning July 31st! Oh yeah, babycakes!! I've gotta be honest here and tell you all just a lil slice into Molly Kate's wisdom. God gave me a "run for my money" but nonetheless, I've learned a lot from it all and I'm gonna give Him a lil run for His money. He always said and I wholeheartedly believe that God never gives you more than you can handle. He's made me a stronger, more inquisitive, upbeat, somewhat more mature, compassionate, calm individual. Well, lemme me tell you that in this Wilkinson family, it's damn near impossible to find that in us all at once, because we all have our corks (myself included). In my young life (although, on the edge of turning 21 - I'm kind of feeling old when I think of my cousins who call me an adult), I've learned a lot myself. I'll tell you all NOW, none of this posting has anything to do with food (or not entirely), because I'm a poor college student who just wants something easy and fast. The biggest lesson that I've learned, thus, this far is that it takes faith, courage, strength, a sense of humor (no doubt about it), compassion, patience, and a shit load of perseverance, if you're ever gonna muster up to some "bumps" and be all that you can be, in the journey called life! Okay, so I guess I do have a lil posting about food. As of now and for about the last week-and-a-half, I've been eating like a mouse that has a half dollar size stomach; it bums me out every time I try to enjoy a relatively decent meal, but nonetheless, I still keep trying. So, I'm in the hospital in pain and my mom's talking to me, trying her best to distract me and gets me thinking about the best meal and any meal (for that matter) that I want to eat when I get home. Honestly, I told her a few places and foods that I want to eat, but the best is an "old school" meal that us Wilkinson kids at on a daily basis growing up in grade school. I told my mommy that I wanted fish sticks, tator tots, and Mac-n-Chesse when I got home. I haven't had the meal yet, but I'm sure that when the time comes, it's going to be PARADISE! So my last part about food (then it's back to a lil more of reality and trying to get a lil more sleep). This Sunday morning, we got a call from my brother, Sergeant MacGregor Wilkinson from Iraq. He and I talked about various things from my 21st birthday to deer hunting in October to he and I living it up at Buffalo Wild Wings with his buddies, he and I when he gets home, and honestly, the list kind of goes on. Oh, but before I signed off, I got orders from my Marine. He said..."I order you from Iraq to go to Alfonso's (a Mexican food restuarant in Prescott), get a Carne Asada Burrito and eat one every day till your lil yellow ass gains some weight back on your skinny body." WOW that was a lot to hear, but by golly gosh darn it, I did what I was told to do (my brother's too strong, and he could literally kick my ass into the next decade - but he never would). So, there I was just before about 1400, purse and keys in hand and off on another Molly Kate endeavor. I went to Alfonso's, got the burrito (it smells damn near amazing), I get home, I'm all excited, I sit down at the table upstairs, mom's getting her camera to take a picture for my brother, and then, I take the first bite. Oh, my gosh - it was AMAZING and TASTY. So, I'm feeling good, I took a drink of water, and then went in for a second bite. I'm thinking to myself "OH NO!" I chew the most tasty bite up and swallow - "few, it's behind me now!" I sat at the table for a few more minutes than went in for another munch. Now, it's "OH GOD, HELP ME!" I feel my stomach telling me "don't you even think of trying to put another piece of food to be processed down here", but I did it anyways. Come on - I feel a lil pressure from my parents and just my pure stubborness. I threw the burrito back into my hands and said "Mom, I'm going in for another bite!" But this time, it was more like "OH SHIT! WHAT'D I DO THIS TIME!" I rewrapped the burrito, put it in a plastic baggie, and off to the refrigerator it went. Then, to my lovely surprise (NOT) for the next hour or so, I felt nausea. FUN TIMES, I'm telling you guys - if you ever get just a tad hair bored, go try my fun times out! I know that this will all be a vague, sketchy memory within four or five months time, but right now, I gotta say, it kind of sucks! Nonetheless, perseverance and a new goal in life is coming together; DAMN, I'm living LARGER THAN LIFE, right now. I've given my parents one of the greatest presents, I'm feeling better than I have in nearly six years (yea that's right), and just loving LIFE! Thank you all for your unfailing love, prayers, support, kind words, fighting half the battle (in the kitchen), and your unfailing best wishes to myself and to my family, especially my mother. I don't know what it feels like to be in her shoes (as she watches her baby girl go through all of this), but I know that it's gotta take a toll on her sometimes. She was such a TROOPER and UNBELIEVABLY AWESOME during my stay - I love you, Mommy!

cook eat FRET said...

great news
what a kid
amazing...

 
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"The Dish" by Catherine Wilkinson is licensed under a Creative Commons Attribution 3.0 United States License.