Random Twenty-Five

Sometimes I think its fun to throw some facts out about your life that some people would never know unless you just said it. So here goes

25 Things You May Not Know About Me...(or you may but thats ok too!)

1) MMMBop by Hanson is on my IPod and the volume gets turned up when it comes on
2) My Dad was my Junior year Religion teacher and put on my report card "parent needs to contact teacher"
3) I went to an N'Sync concert...not so proudly. (Jeremy went with me...proudly!)
4) I've known and been friends with Tay for 28 years

#4 Me and my Tay (10 years ago!)

5) I could eat beef every single day...ok so pretty much every single MEAL
6) It creeps me out if my toenails aren't painted
7) I was a Sunday School teacher for 6 years
8) My hair has been every..ummm "Natural" hair color possible and then back again
9) Laila looks more like me than people think

 #9 Me as a little girl...just for proof

10) I don't consider myself a strong person
11) I would much rather get a card with a meaningful sentiment than a present anyday
12) I was a cheerleader in high school...but felt MUCH more at home on the softball diamond
13) I still sleep with blankets I slept with as a baby and not ashamed to say or do so
14) Jeremy calls me Sandra
15) I was diabetic at one point and now am under diabetic suspicion
16) One of my grandpas bffs as a kid was Mike Ilitch (you know the owner of the Detroit Red Wings, Tigers, and the founder of Little Caesars!)
17) I once told a news reporter that I wanted to be a bird when I grew up...and it was published in an article
18) I love dressing up in a good costume and having some fun!

#18. Dressed as Jossie and the Pussycats

19) My sister used to pierce my ears for me and at one point I had 9 holes all together
20) I worked at the Santa and Easter bunny set in high school...and once had to actually dress up as the bunny
21) I have had 5 surgeries and am not finished yet
22) I had to wear elastic pants or overalls when I was a kiddo because my belly hurt too much (thanks CF!)
23) I am a very VERY shy person when it comes to talking to people face to face
24) I drink a gallon of Vit D milk every day
25) Jeremy and I are high school sweethearts

#25 after the homecoming game 

One Step at a Time

She is getting WAY too big...WAY too fast! (Although seeing as this backpack is half her size makes me feel better!) My little girl went off to her first day of school today, and Momma was there to walk her.

My little girl grew up and went off without blinking an eye. She was ready and excited to get to school to see her friends (Jackson, Pieper, and Addie must know how much Laila loves them all, because Jeremy and I hear about them a ton) and learn new things. After a full morning of trying to establish a good routine with her for a school morning...gosh, i hope this gets easier...she was ready to go 20 minutes too early. But at least I had those 20 minutes to get ready!

She got to pick her outfit out. PURPLE GLITTER star shirt, jeans, silver GLITTER shoes, silver GLITTER nails; as well as her PURPLE backpack and PURPLE GLITTER folder! Do you see a theme is all this...haha girls got moms taste! And of course, you know I didn't influence that at all. "Hey Laila...look at this glitter!" YES!

I am pretty sure Laila couldn't walk fast enough. HURRY UP MOOOOM! Luckily, I am still feeling pretty good so I could walk as fast as she wanted me too. Truthfully I wanted to walk as slow as possible because I didn't want to let her go, but...sigh...whatever makes her happy, right?! So off we went.

We found her hook for her bag and she didn't even look back to make sure we were following before she bolted into the room. So Jeremy and I smirked at each other and followed her inside just to be ignored a little more. She found a PURPLE toy and was content with that. "Do we just leave?" I asked Jeremy. He gave me that look of not wanting to tell me what I didn't want to hear and responded with a shrug. Well crud, I had to do it. I had to give up my baby and give her into bigger girl world. So I bent down kissed her and hugged her through teary eyes and told her I would be back to pick her up.

ALMOST 3 HOURS LATER...

I go with a skip in my step to pick up my girl and hear all about her first day of school. It was cute because without her knowing I got to watch her grab her bag and stick in on her back and just look around innocently waiting to find her Mom and Dad. Loved that moment when she saw me and skipped over with a huge hug. Too bad she still hasn't told me anything about school other than she sang the "hello song", played outside with her gang, and sat in a YELLOW shape (Yes, thats a big deal because we had to prep her for the fact that she may not always get the purple one...today some boy sat in it!) But luckily Mrs. Kolbow told us that she was a very good listener!



So after 3 hours I got my baby back and shes has been held tight for the rest of the day...and glad I don't have to do that for another week! But very excited that I got to be there and see my girl go of too school. And not to mention I got to cross another thing off my list because today I go to #87 Walk Laila to her 1st day of school!

A Piece of the Collection

I fell absolutely in love with this painting. Ok, I fell in love with this entire ROOM of paintings! Yeap, it happened, I went to an art museum and had a tour. And I feel I will need to see many many more art museums because I kinda became a huge fan!

Thanks to April and Mike Marquardt (and Matt and Seth) Jeremy (and Laila) I was able to enjoy a day of art and culture and just revel in all the beauty...and even the things that weren't so beautiful in the eyes of this beholder...of the museum and it's collections. The Milwaukee Art Museum had such stellar and interesting pieces, I just kept saying, "I want that in my house!" But the one above took my breath away and I stayed there for quite awhile just staring. Then Jeremy found me..."So what do you see in it?" he asked. (I always knew I had a things for expression abstract art, but today solidified that a million times over.) Well, what I saw was a range of emotions in what the artist was doing, even if strokes of the brush told a story. I do have to admit to feeling quite cool when he asked and explaining how and what I saw it. Yeap, I'm just so cool and artsy (haha ok so by far not artsy or edgy!!)

Our tour guide was new and of course gave us a few giggles with some words that must have been her catch phrase, "This is a VERY significant piece in our collection!" If I got a penny for every time this girl said that, I would be able own my own collection bigger than Milwaukee's! But seriously she did know must of her stuff and made me see a few pieces that I probably wouldn't have taken a second look at, plus like I said it gave us a good giggle!!



This was one of Jeremy's favorite collections in the collection. It was made all of like push pin needles. It was AMAZING how this artist could do this...crazy. The other picture is just a small portion from another painting that I fell in love with. BEAUTIFUL! (and not surprising the the same room as my fav pic!) I also got to see a Pablo Picasso as well as one of my favorite artists, Georgia O'Keefe (hey did you know she is from Sun Prairie, WI?!) The story behind some of these paintings, or sculptures, or other pieces of art just blew me away. These people, as crazy as they may have been, were very deep and they saw the world like other people didn't. That's why I love art, its all in what they saw and how you see it from there. 



It was so nice because even though I was on my feet all day, there wasn't a moment I needed to sit or cough or catch my breath. That itself is almost as beautiful as the artwork we saw! I was also very excited because my little Laila got to make her own sculpture of a bug. She is so proud of it and its displayed as the very first piece of Laila's collection on our home (its very significant....oh I just couldn't resist that one!)



Thanks again to the nice neighbors I have who spending the day with me laughing, eating, making memories and crossing off #82 Go to an art museum and have a tour

Learning to write

Thanks to everyone who answered my FB status question lastnight. I have a pretty good handle on what to write about now. I guess I need to organize my blog a little better now haha!! (thanks for being so patient with me as I learn how to write a blog and what works and what doesn't!) So I now have at least five categories going on and I am pretty sure that I will not write them in any order or pattern, but pick and choose what I am feeling that day or moment. 

As I look at it this blog is not only meant for people who care and want to read about my life and life with CF, but it is for me to be able to write what I want and say what I wanna say without anybody stopping me...if you don't like it don't read it, RIGHT! I have had moments that I think I need to stop because it could get too personal, or people may read things wrong...but then I thought again because this is what makes me happy and makes what I go through a little easier. I say this is not a selfish way, but in a its the truth kinda way.

Anyway...i digress...so back to this category subject, I have: 

1) A health report...this way everyone knows the facts of my CF life. Numbers, tests, hospital stays, etc. Its the facts rather than anything else. 

2) My feelings...what happened during the day, my feeling towards CF (not numbers but feelings in my battle) How CF turns my world, Laila's world, Jeremy's world...my families world. Rant and rave. How I struggle. How I succeed. 

3) "100 Things" list...what I have in the works, what I have crossed off, what I am wanting to cross off and how I get them crossed off. This is by far the most exciting!

4) Memories...both good and bad. From childhood until the present. CF memories. Regular everybody has type memories. Things that make me smile! What shaped me into the person I am today.

5) People in my life...these are the people who have been with me thru everything and deserve more thanks and praise than I give them. They helped me with lots on my life and are people I love, cherish, make me laugh, and of course make me cry!

I know the pictures may not ALWAYS go very well with what I am writing (kinda like todays) but it is a picture that made me smile or that suits whats going in my head, or really just because I like the picture and wanted to share it!!

I am so excited to be sharing all this stuff with all you who read it, and want to read it, and (I hope) like to read it. You should all know that your reading and letting me write the things I write is helping cross off a number on my list!! Stay tuned because there is much more coming...

Making More Memories

Boy, oh boy. Tonight was Lailas practice nice for her preschool and I don't think this momma is ready to let her grow up quite yet. But I can tell you that she is much like me when I was young. Like that limerick says...There once was a little girl with a curl in middle of her forehead. When she was good, she was very good. But when she was bad, she was horrid. Haha, well, thats my curly haired little girl.

I had a fun day with Laila today. We shopped and had lunch and just talked some "girl talk"...you know about Mickey Mouse and what our favorite color is! She was stuck like glue and I think it was good for both of us, because Yes, I needed today probably more...ok ok ok i KNOW i needed today more...than Laila did. I got her as my baby one last time for an entire day before school starts. And, yes, I did tear up tonight and not ashamed to say so! 

Today was so nice because I carried her...a number of times...without running out of breathe. Hello, lungs meet oxygen again! And just in time to take this weekend and love her to pieces. Over protective mom...probably, but again not ashamed to say so.  My CF was pushed aside today, not in the "I didn't take care of myself" way, but more in the "I feel so good that I am not going to let it take over the day" way. Sorry if you are getting tired about reading about Laila...I warn you now that I will be talking much much more about her. 

My "100 Things" list is going in full swing and I have about 7 things in progress. Good enough for me to say I am going to make this all happen and while I am at it...Suck it CF because I rule this one. And the best part is, I have people who not only are just helping, but WANT to help. And to tell you the truth, I like being able to meet my goals and cross things off and make memories with so many people. Because really when you think about it, whats better...doing it or the memories and stories you keep forever?!

So let me thank all of you who have helped or said they will help! Without you I wouldn't have the memories I already have!!

Leaving Laila

This morning was the first morning in a long time that I woke up and didn't feel like I was going to cough up a lung. Ahhh, whats that feeling again?...its the feeling of getting air in my lungs! Turning the corner on my oral antibiotics. But this is just temporary and when I am finished with them it will only be a short period before I would need more orals...hence the needed tune up. But its been since December that I have needed to go into the hospital so I feel its a pretty good accomplishment.

I got some good advice from a wonderful person who knows just a little about what I am going through (I say little with much sarcasm....he is 14 years out of a double lung transplant and battles CF everyday too!) "...life sometimes needs to be put on hold to handle this illness to fight the battles, and to win the war." I am not sure anyone could say it better, thanks Ryan! He is 100% correct, but its is much easier said than done (and I know he would agree too!) Its hard to pick the moment you can skip in your life, or your child's life, in order to make sure you are here for more of those moments.

With that said, once I sign up for a transplant and one day, hopefully, get that call, the life of the 3 people in this house will be put on hold, not to mention many people on the other side of pond in Michigan. My mind races everyday on scenarios on how all this will go down. Both who to call and when to call, all the way to what happens if  I never make it out of the hospital! What if it is 2 am and Laila is sleeping...who will wake up and rush over to make sure somebody is here? And that Laila needs to be comfortable with that person. Do I have a bag packed so we can rush out the door? What is I am far away and can't make it back? What if I do make it back and the lungs are compatible? What if my family can't be there in time to say goodbye? How do I say goodbye to Laila in fear that I may never see her again? My emotions are getting the better of me right now because I don't know...yeap, the fear of the unknown.

The weird thing is, I am not scared for the actual surgery. Yeah so they cut my own and place a new organ in my body...sounds scary, but its not. I am not scared of the work I have to do right afterwards. I will do anything to get out of the hospital as fast as I can :)  I am scared of not knowing how to get to that point. Or the plan of action once it happens. I want Laila's life to not be turn as upside down as it may be. I want her to be happy and run and play and eat white rice (its her favorite) whenever she wants. I want her to know that her Mom is doing this for her! I want her to know that even if I don't see her for weeks that I didn't abandon her! 

I am excited that one day I can show her my scars and tell her that its proof that you never give up and fight for what you want. I fought a battle in order to have her and not going to give up being her mother without a fight! But scared about not being able to keep up that fight. My little girl cries when I go anywhere without her, because, as she says, she "needs me," but I always tell her that "Momma will ALWAYS come back." But what happens if I don't? The fear of the unknown.

Tune Up

So I decided I needed to see what all I had in progress on my "100 Things" list. Holy Cow, I am one busy girl. And to tell you the truth I like being busy with all these things and have them to look forward to. Time to buckle down on a few and get them done. The big one on my list write now is writing a childrens book for Laila...I have too many ideas and need to nail one down!

My mood has been a little melancholy the last few days. I think it all stems from the Augusts of past and now this year August means giving up my baby and realizing she is a "bigger girl" as she like to say. As the weather cools down and school supplies are in the store, heck I even saw caramel apples, it brings back many memories: Thanksgivings at Boppa and Ma's, saying goodbye to Jeremy for 3 months, starting school with friends I don't see as much, playing sports, Picc lines, attending Michigan football games with my dad. Just memories.

HEALTH:
Ok so I have had a few people ask me (and my fam) how my health has been. SIGH. Well, it is better. As I have been told to say "I'm hanging in there." I am not sure I will ever be able to say good again. The cold really knocked me backwards, but it is fall, and fall has never been a good season, health wise, for this CF patient.

I finally called the doctor a few days ago and we decided that it is time for a "tune up"....UGH!  There is never going to be a good time to go in, but you know that motto I talked about, "You gotta do what you gotta do when you gotta do it," plays a big role right now. But, of course, I need to be a mom first so luckily the hospital stay got pushed back a few weeks. My poor baby doesn't even know what a "normal" life is...this is her "normal" life. Totally not fair of me to do this to her, very selfish.

I hate knowing that I have not gained enough weight and knowing my PFT (pulmonary function test) went down. My PFT can't go down too much more or that won't, well, to put it frankly...be anymore me. I need them both to go up so that I can one day put my name on the transplant list (here is a topic for an entirely other post...) This whole subject just makes me want to scream and I feel like a person who isn't as strong as I should be (another topic for other post...)

Eat and Breathe: a full time job!