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So this is Christmas. Like I had said on Facebook, I am missing many of my childhood traditions at Christmas but watching Laila get hers, and therefore making them mine as well is turning out to be a blast. Now I know why my parents made certain things stayed a tradition.
Church was great and Laila said her part and sang her song with all the love in her heart (but sitting still in the pew was a different story!) She knows exactly what Christmas is about and still believes in Santa...see you can have both if you make sure the focus remains on the right one. And thanks to her father she knows her stuff. But yes, Santa did stop at the Husby household with just what the little girl wanted a "polk-a-dot pony" and "swan Barbie movie." I think he could have just stopped there!
One of my most favorite traditions in Christmas Day. Church then run home change and off to Ge and PaPops house we go to celebrate with family and all our friends who feel just like family. I loved every single person I spent Christmas with (but many I missed too!) and I just felt joy. This Christmas was going to be one to remember and it sure was. Great food, great mood, giving, being merry, booze, family, friends and of course my curly haired baby and all 20 ponies she got (and yes she got 20!)
Then the next day got to celebrate with my mom and dad and sis with a small relaxing gift opening from Santa and the gang. Followed a few days later with Christmas at the Husby's. It is always so awesome when you get to spend most of the day with your family and not have another care in the world. Thanks to both families for making this Christmas so wonderful!
I was so spoiled this year between Christmas and my birthday..just watch for all the things getting crossed off my list in less than a week CRAZY! But what was more fun was watching everyone open their gifts and enjoying the essence of the season. I could live in this week (like Groundhogs Day) every single week. But not sure my health could really keep up.
I am working hard and trying to still stay healthy which is a large chore when you keep busy. Today I didn't get out of my pajamas or even wash my face...yeap thats lazy and I would still do it over. My lungs are slowly starting to work harder and the cough is getting more frequent. But for now (besides doing my meds..) I am forgetting that I am a sickie and going on enjoying everything. Before reality hits the next few months with everything going on.
I hope that you all had a Merry Christmas and that you got to have as many memories as I did. Much love...until next blog when I start crossing this off that list!!
That time is so here and I am such an excited girl. This is Laila and I making a gingerbread house at her school. I think half of it is already eaten, she loves it. It was awesome to be able to go watch her program and make this while feeling pretty good.
My list of things to do before we leave for home is getting smaller and smaller. Today was an entire day of wrapping presents with my awesome helper. Just to let a few of you know she wrapped and decorated a few by herself so excuse the short paper or the 10 bows or the tape that even the Hulk wouldn't be able to get through. But she had fun and so did I...so deal with it! She even told me I was a great little helper. Thanks Laila, I do what I can.
As much as I don't want her to grow up I have to say it has been fun this year with her understanding more and wanting to help and all that. (And I have more patience because I have been feeling pretty ok.) And it melts my heart because she is way more into giving then receiving. She had to make sure everything was perfect and it brought a few tears up...phew I am doing something right with her. Gosh, I just LOVE her. She won't even tell Jeremy and I what each other wrapped, she is so good at keeping her secrets. Ha not much like her Mommy on that one.
I hope that all of my family and friends have a wonderful Christmas this year. Full of being merry and good cheer and most importantly remembering what the season is about, CHRIST! I am still trying to keep the band-aid on my health so that I can do the same. I just have to remember to take my time and breathe and not over do it this upcoming week. I am ready for the questions about lung transplant and for all my family who are interested I am bring home quite a bit of paper work on how the evaluation in going to go down this April. For those who won't see me I do plan on blogging about this when the time gets closer and its not a season I am trying to forget I am sick.
MERRY CHRISTMAS!
Yes, people that is one GOOD ha straightener you see!! I think I could sell one to every girl I know. You want a straightener,PLEASE buy this one because it works that well. And it works on every hair type. So far, it works WONDERS on mine, it works on my sisters and also my moms. Its one of the best.
The Instyler. It is a for sure and I will never wonder which one to buy again because this is the best and if it makes this fro straightener and smoother and SLEEKER and tame you know its a good one.
I am not allowed to tell everyone that this one got crossed off with help by a certain Aunt. So I won't. But I will tell her here that I love her so much and that she makes me smile more often than she knows. She is always there when I need to hear a nice few words encouragement. So thanks to that wonderful Aunt!!
So crossing out another thin on the list #46 Get a GOOD hair straightener. CHECK
10 year old Cassie got her dream come true lastnight and 29 year old Cassie's heart beat just as fast as if she was 10 again. Kris Draper left me a voicemail. WHAT!? Oh my goodness #33 from the Grind Line (insert nervous girlie giggles...)
He happened to be at the same Michigan hockey game that my Dad was at and all of you who know my father know that he would do pretty much anything he can do to put a smile on my face and keep me in a fighting spirit. And well, he did it again. He Mr. Draper and asked him for a favor, "Would you call my daughter..." and went on to tell him my story.
When I was a young girl and there was nothing better than the Red Wings and especially Kris Draper of the Red Wings my Dad pulled out some stops and got me an awesome treat before a huge surgery. I got a signed puck, signed magazine and a few other items while sitting in awesome seats by the Wings tunnel at a game. THANKS KRIS I shouted as he skated unto the ice, me decked in my Kris Draper jersey that was more like a dress. (If only I knew how to bet and accessorize back then!) It was a night that I got to forget I was sick and be a girl who couldn't stop smiling.
Now I wore his jersey for every game. And well I became a good luck charm in a certain member of my families eyes. The wings were hot that year (and ummm brought the Stanley Cup back to Hockeytown!) So I even woke up one morning with the jersey on my bed. Creepy...a bit, but it worked!
So almost 20 years later, on my phone is a message from that same guy. Maybe because I am still sensitive about the topic that shall not be mentioned...or maybe because I didn't expect it...or maybe because I know that my Dad did it out of all the love he has (and really probably a combination of all these and more) I got teary eyed and those tears fell hard. Kris Draper told me to keep fighting and that he was thinking of me and that well he was just such an awesome guy that he would walk away from my Dad so the message was just that much more personal. Now if that wasn't cool enough he asked my Dad for my phone number and permission to call me and talk to me again. Whether or not he will or not will be determined. But hey, he has my number and that in itself is cool. KRIS DRAPER HAS MY NUMBER AND KNOWS MY NAME AND STORY!!!!
So here is a big thanks to my Dad and Kris for making almost 30 year old Cassie feel like she was 10 all over again and make me have a little bit of pep in my step today. You guys did more help than you probably really know. GO WINGS!
HAHA Laila was so sad...
So after today and sitting here trying to think of how to start this blog I have decided that its my last day to think about this until after Christmas. Mostly for myself but also for Laila, Jeremy, the rest of my family and my friends too. I realize that is affects my mood and there fore affects how I act or treat people and so since Christmas is my favorite time of year. The one time I still feel like a kid because I get that feeling in my tummy still when I talk about Santa...you know the one where a bit of you thinks he could real. And then I think that I didn't come on this earth in human form knowing I was going to die a horrible death in order to save other people. So this is it until after Christmas and the New Year.
The new year...2013 a big year here in the Husby house (and the Zell house in MI.) Today after much mulling and tears and fighting with myself I called the transplant team and scheduled my evaluation to see if I qualify for a new set of lungs. Scared? Understatement. Emotional? Terribly. Excited? Haha not sure yet.
The crazy thing is I had just got Laila out of the bathtub and was stirring cheese into Jeremy's lunch when I burst into tears. What would happen if I wasn't here. What would they do? Now I know that Jeremy is capable of taking care of him and Laila and I have faith in that 100% but I also think about how they need a mom and wife too. Things like this happened all day. I looked at the half lit Christmas tree and cried because what if its the last one or what if next year I am sitting in a hospital praying new lungs come. My thoughts were so messed up all day that my heart just hurt...no other way to explain it.
I feel so silly about all this and I am sure some of you think I am. WHY WOULD'NT YOU GET ON THE LIST ASAP? THIS IS A GOOD THING YOU ARE GETTING THE EVAL! But as much as its easy to do it for everyone else its also very easy to not do it. Yeap, I know that sentence didn't make sense but thats how it all is in my head too. SCRAMBLED.
So April 2-5th I will be in Madison going through the biggest test of my life and I want an A. What a way to spend Easter right...getting prepared for the madness. But I think its a good birthday gift for my Dad (HAPPY BIRTHDAY DAD!!) I am starting pulm rehab soon (also starting setting that up today and PHEW its in Hartford!!) and looking forwarded to getting my package of all the information on how and when and why I have to go through the 4 days of tests and talking. The 2 words "Lung Transplant" has never bothered me as much as they started to today. I didn't even like looking at it as I was typing it. But Yes everyone I will be getting one and I will not stop fighting and yes I will do what it takes.
So there I did it and I posted it and now I am gonna drop it and have a wonderful not sick kind of 2 weeks.
Doesn't that oxygen look good on me HAHA!! I have been home for about 1.5 weeks and it feels pretty darn good. I was lucky enough to have family here the first week I was home to help do, well, EVERYTHING. They cooked, cleaned, cleaned, did things around the house, and cleaned. Thanks to my in-laws, Aunt Diane, and my beautiful mother. I am very nervous now that everyone is gone that I will fall downhill fast. Learning new things about myself...like how I am sicker than I think...and trying to be good a listen to my body.
So like I had said before I was getting a handicap sticker so that on cold days (and hot ones, or days I don't feel well) I can walk as little as possible before doing things I need to do...like Christmas shop or grocery shop. They cold really does get me, and come to find out it is normal for CF patients to have one. I am really nervous about using it and getting the odd looks from people who think I am just using the sticker to get a good spot. I mean I don't have a cast or wheelchair or a limp, and to a person in public I look pretty healthy. I told my parents I would just tell people that my lung capacity is 27% and I would trade them spots in the parking lot vs. health anyday! Well, I used it today for the very first time and got looks from 2 people in a car...and I did nothing but feel sad. I wimped out and said nothing but just walked away with my daughter. Something I guess I just need to deal with.
I don't admit this very often to people especially this many people, but I feel this time I got sick and hospital stay really took a huge toll on me. I lost a part of my health that I won't be able to get back. I am getting sicker. But I hope that I can stay this way for awhile and work up to being able to pass my big test in a few months. Somethings I still need to set up and trying to pysch myself up for it. I just keep trying to tell myself that this isn't defeat, CF hasn't beat you. You can still beat CF. Breathe Cassie.
Have to switch gears before I get to my emotional wreck stage again....
Laila had her ballet show this past Sunday and did such a fab job. She kept telling us she was so excited and she danced her little heart out. I know I may be biased but she was the cutest and best ballerina out there. She knew it all and hit her cues and marks! Yay Lai!! Yeah yeah I know I am just being a mother...BUT ITS TRUE!!
We are getting ready for Christmas (slowly) here at the Husby household. We tried settng up our Christmas tree tonight but half the lights are burnt out so it looks pretty funny right now. Another prject for another day. We aren't sending all the Christmas cards this year so look for a copy on the blog and my facebook....it makes me laugh. The presents are being shopped for (again slowly so I don't get burnt out) and Laila is learning her part for the Christmas program. Very excited, because this is one of my favorite times of year.
I know I have been awful about my 100 lists so watch the next few days for a few blogs about it! Very excited!
I became friends with my nurse from lastnight. She stayed in my room for about 1.5 hours and we just talked like normal people. And then she switched so she could be my nurse again tonight. It is pretty nice to have somebody here to just be honest with and tell her I have no patience for the new nurse today. I mean I am pretty good with my nurses but when they need help from somebody...go get help instead of messing with my crap. Just get it done so I can get it done.
We have a new plan of action for the last congestion that is not going away and keeping me in this little D6/5 cell. They are thinking my ABPA is back and going to test it on Monday with a simple scratch test. And if it is guess what that means....PREDNISONE! I am sure a few people just cringed like I did. Fat, moody Cassie making a visit for Christmas. (Hold on to your Sharpies Ang!!) Umm lets just make sure I don't eat three burritos and then a box of Lucky Charms on top of it this time. But it would mean that they figured out what this hack is and it can slowly get cured enough that I can feel better.
Here is a link about ABPA from the CFF: http://www.cff.org/LivingWithCF/StayingHealthy/Germs/ABPA/
I have been day dreaming about my first home cooked meal after this stay. I am dieing to have a hot meal made out of my kitchen with my food and I can eat as much as I want and have about 3 tall glasses of milk to accompany it. Huh I wonder if my appetite is starting to come back. Yay what a good sign.
I am going to take this moment here to thank a few people for all their support. First: thanks to all of you who have sent countless texts, messages and facebook posts with all your well wishes and prayers. I am serious when I say those help make me want to fight even harder. I also want to thank Trish and Dave for sending me those wonderful CPops in the mail. That chocolate is so rich that if most "normal" people even looked at them they would gain 2 lbs. Plus umm HELLO they have silver and gold glitter on them so I feel a little awesome when I eat them. Next I would like to thank all those who have watched Laila while Jeremy needs to get some work done (April, Knoecks...) Thanks to Aunt Gwynn for coming up from Chicago for 2 days and making Laila's day!! Thanks to my in-laws who are leaving tomorrow to give Laila and Jeremy some more normalcy for awhile and my Mom and Diane for coming later this week. I am not sure either Jeremy and I could have done all this craziness without you. And of course I want to thank Jeremy and Laila Girl for coming every single day and stay hours at a time with me. And for bring my food that isn't from the hospital. I know this is just as stressful on you two as it is on me. Mommy will be home soon!
Ok, Cassie...remember to breathe...
