'What are you doing for others?'

"We recognize our own mortality, and we are reminded that in the fleeting time we have on this Earth, what matters is not wealth, or status, or power, or fame -- but rather, how well we have loved -- and what small part we have played in making the lives of other people better." ~ President Obama, 1/12/11 speech at the Arizona memorial

I saw this quote on a fellow CF blogger's Facebook page last week, and I've reread it every day since. Regardless of your political stance, these truly are words to live by. Some days I am challenged. The kids are crabby, I'm crabby, everybody's crabby. The house is a mess, the dirty laundry pile is MUCH higher than the clean pile and the dog decides it's a great day to run away.....only to return home 3 hours later and take up puking all over the house for the NEXT 3 hours. Whatever. Everyone has those days. But I'll tell you what. Try reading that quote at least once a day, realizing it's context, and you'll strive to take those days in better stride. Trust me.

Today is a day set aside for service. Martin Luther King Jr once said "Life's most persistent and urgent question is: 'What are you doing for others?'".....so, today, set aside a little time. A little time to serve others. A little time to love deeper. A little time to hug tighter. Take time to really think about who you love and how you love. Sometimes it's the smallest acts of service and kindness that add up to the greatest difference. I can tell you from personal experience, sometimes kind and encouraging words are all it takes.

Sealed with a Kiss (and a swear word or two).....

I'm not sure if this is incredibly cute, or horribly sad.....I overheard a conversation between the kids this morning while they were playing house (which, by the way, somehow ALWAYS means it looks like a bomb went off in here.....literally EVERY SINGLE doll, dish, stroller, blanket, etc needs to come out of every closet and toy box....you know, so it seems more 'real'. Apparently, my kids feel more at home when they are stepping over toy landmines) So, they each had a doll they were carrying around doing this, that or the other thing.....when the conversation turned to 'treatments'. None of the babies were able to 'play' until they had each done their treatment. 'Treatment' was a breathing mask they each passed around to their babies made out of Tinker Toys. I know I should probably just be happy they were using their wonderful little imaginations, but it makes my heart hurt so bad to know that THIS is their normal. Breathing treatments. Normal. That just isn't right, damn it. Something as simple and fun as playing house has to turn into battling cystic fibrosis. That's not how I remember playing house as a kid. Not in the least bit. FUCF. FU.

Working on these felt flowers has been more therapeutic than I expected. I honestly find myself chanting in my head F.U.C.F. over and over as I'm making them. I just learned of a fellow CF mom here in town that is in the hospital with her son due to low PFT scores and other CF related issues. I JUST saw her. And he was doing ok. Now he is in the hospital. I hate it. I'm walking around with a big lump in my throat half of the time, covering it up with a dumb smile on my face. These people are fighting so hard JUST TO BREATHE. Imagine that. FIGHTING. TO. BREATHE. All while there are people out the CHOOSING to kill their lungs. Choosing to kill their lungs, while there are people like my daughter who never asked to have lung disease. Choosing to kill their lungs, so there is one less set of healthy lungs that could potentially save someone's life. Today is just one of those days where I'm angry. I'm sad and I'm angry. Cystic fibrosis never goes away. Not even for one second of one day. Not even when my sweet little babies are playing an innocent game like house.

So, when you open up your Roses for Rylan package......please know that you have not only helped raise money for CF, but you've helped save my sanity as well. Not only are they 'Sealed with a Kiss'.....but they're sealed with a swear word, too. FUCF.

Roses for Rylan!!!

So, what do you get when you mix several sheets of felt, a pink mini hot glue gun, and some wine?? ME.....on a Saturday night. And a fun, little fundraiser for cystic fibrosis and Team Rylan.....'Roses for Rylan'!!!

Okay.....so they're not quite 'roses'.....and I'm a terrible photographer.....but you get the point. :)


Color Option #1 (Brown)

Color Option #2 (White)

Color Option #3 (Black)

I'm making felt flower hair clips that can be attached to either a crocheted headband or hat. You just choose which color option you want, and whether you want it in a hat or a headband! And, just so us moms aren't left out, I also found some cute adult conductor hats that you can attach a flower to.

So, here are the details.....I will be taking orders from now through the end of this month, so I can get the items shipped in time for Valentine's Day (great gift idea!! Hint, hint!!). All prices include shipping within the US.....and ALL proceeds go to the Cystic Fibrosis Foundation and Team Rylan. Just send an email to me (TeresaJMack@gmail.com) and include the following information:

1.Which Color Option (Option #1, #2, or #3)

2. Which style. Your choices are;

• 1.5" Headband = $10.00


• Baby Hat (newborn - 9 months) = $12.50


• Children's Hat (up to approximately 5 yrs) = $15


• Adult Hat = $20 (**please note, this ONLY comes in gray with the gray felt flower and there is limited availability!**)

3. Your address

I will send you payment options as soon as you email me your order. Getting crafty for a cure!!!!! We're having so much fun with this!

Finally.....

There have been so many times over the past 2 weeks that I have pulled out this computer, sat down, and opened up my blog FULLY intent on posting SOMEthing, ANYthing.....only to have some little person start yelling from somewhere in the house needing who-knows-what. Ugh. What a whirlwind this holiday season has been! But, it has been, BY FAR, my favorite one yet. The kids had an AMAZING Christmas, filled to the brim with family and friends.....


Decorating cookies with buddies.....


SOOOOO excited!


But, definitely not much of a help. Between the two of them, I think the babies got the same cookie decorated (and then licked clean) 5 or 6 times.

We also got to celebrate New Year's Eve with some amazing friends and had an absolute ball (no pun intended). Let's just say our little family put some SERIOUS dents in the sofas on New Year's Day! It was a beautiful day sprinkled with naps, cuddles and "I love you's".....

So far, my prediction of 2011 kicking some serious butt has been dead on. We had clinic this morning and (I never thought I would hear myself say this) IT WENT AMAZING. Rylan did fantastic, even after getting up at 6am (2 hours earlier than normal) to squeeze in an hour-long treatment before heading downtown. Kohen, being the ever present 'brotherguard' that he is, made sure to never leave her side while she was getting weighed and measured and having her oxygen levels checked. He smiled so proudly when she opened her mouth (in his words, as wide as a lion!) when the doctor asked to look at her throat. Even at such a young age, he is so curious about it all. He followed my lead when the dietician came into the room by standing up and walking over to the computer to get a better look at her growth chart. He knows that specific part of the visit is always a source of stress, so I about lost it when he went so far as to offer her a piece of his apple bubblegum. Unchewed even. Talk about trying to butter her up! Bless his little heart....wise beyond his years!!!

On to the updates.....her BMI is now 39% (up from 1% this past summer), so we were BEYOND happy. It was such an encouraging visit. She *knock on wood* has been so healthy this winter. I thank my lucky stars every day. There is nothing worse than hearing those coughs through the baby monitor. Absolutely nothing. We are currently back on TOBI (still from our positive PA culture last summer), but this should be our last cycle! I am fully expecting to get our 3rd, and last, negative culture after this round. We are taking this new year by the horns and showing it who's boss!! Cheers to new beginnings!

Thankful Thursday.....

The people over at RSBR have been urging people to write 'Thankful Thursday' posts, which is a pretty cool tradition. So, I'm jumping on the optimism bandwagon and following suit. Plus, this is just that time of year when it's necessary to take a few moments out of your busy, hectic schedule to really think about everything we are blessed with. So many of us get so stressed out and crabby during the holidays (just ask any of the checkout clerks at your local Target, they've got GOBS of stories) that we tend to forget what this season is all about......so, here goes;

I am thankful for the release this blog has given me.
I am thankful that there are people who actually read it and are learning about CF.
I am thankful there are people who are organ donors. (Hint, hint. There's an icon over on the side of this blog.....it'll take you 2 minutes MAX!)
I am thankful that there are self-diagnosed 'non-profit junkies' in this world.
I am thankful that 2 of them run the entire Iowa chapter of the CF Foundation.
I am thankful that my daughter calls everyone honey.
I am thankful that my son knows what a 'random act of kindness' is.
I am beyond thankful for the men and women who have dedicated their lives to researching and developing drugs that will eventually lead to my daughter's cure.
I am thankful that I have a husband who 'gets me' (most of the time, anyway).
I am thankful to be an aunt AND a great aunt.
I am thankful to have a baby goddaughter.....she is absolutely breathtaking.

And, finally, I am thankful for all of my friends and family for everything you've done for us throughout this past year. I am thankful for every penny you donated or raised. I am thankful for every supportive word spoken. I am thankful for all of your prayers. I am thankful for every single one of the emails and Facebook messages I've received with words of encouragement. I'm thankful for the shared tears and the shared smiles. I am blessed beyond belief.....

As we gear up for the New Year and another year of fundraising, I want to share a video we made for Rylan. Please feel free to share it with anyone you'd like who may want to help our efforts. 2011, I have a good feeling about you.....

Make video montages at www.OneTrueMedia.com

My Not-So-Little, Little Boy.....

I am amazed that THIS is how my now 5 year old, 56.4 POUND 'little' boy, 1st came into this world. He came 8 weeks early and weighed a whopping 4.1 lbs....he was 18.5 inches long and looked like such a wrinkley old man :) But his Daddy and I thought he was the most beautiful, sweet, angellic little being we had ever laid eyes on. He was immediately whisked away to the NICU and stayed there for 46 days. I came home to shower every few days, but beyond those few hours at home, I never left his side. Daddy had to eventually go back to work, but his mind was never 'fully' there. He would bring his laptop to the hospital and work from there as much as he possibly could. The two of us slept on a little cot that was made for someone more like Chewy on Chelsea Lately.....but we were petrified to leave him.



I remember the day we finally brought him home and how quiet the house seemed. We were so used to the hub bub of the NICU and all the heart monitors and O2 machines beeping, when it was finally just the 3 of us (plus the 4 legged furry older brother) it just all seemed so surreal. Barry and I took turns watching him sleep in the bassinet just to be sure he was still breathing.....

Fast forward to today.....I had to take Kohen to the pediatrician the other day (it felt so strange to make the appointment for HIM, instead of his sister!) and when he jumped up on the scale and I saw the 56.4 lbs come across the screen I about lost it. HOW DID THAT HAPPEN???? When did he get to be so big??? He was literally just 46 lbs, I am SURE of it. Wasn't that just last month?? No, maybe it was at the beginning of summer??? I can't remember. But all I know is he is now a boy. He is 5. Granted he has been for awhile, but it just hit me like a ton of bricks. I looked at his hands and almost cried. He doesn't let me hold them anymore of course, so I hadn't noticed how big they really are.....

I wish I could remember the last day I bounced him to sleep in his nursery while he laid across my stomach looking up at me. I wish I would have realized it would be the last time. I wish I remembered the last time I heard him call 'MAMA, AARRRREEEEE YOUUUUU?' from his room in the morning waiting for me to come in and get him up. I wish I would have realized in that moment that I needed to really listen to his little voice and cherish it because it would be the last time he would say it in just that way.

You know what started this sappy post? Finally packing away the summer clothes that don't fit him anymore. And of course, since I was getting all sentimental, (and being the girl I am) I decided to get even more emotional and pull out his box of baby pictures.....

Potty Training Tool!!!

Updates GALORE!!! 1st and foremost, clinic called last week and we got yet ANOTHER culture back that was negative for pseudomonas!! Thank you, God, for this 'little' reprieve. I know how quickly those nasty bugs can sweep in, so I'm just thankful for each and every day that is (for the most part) cough-free.....

This last week has been a VERY eventful one in the Mack house! We are officially pacifier-free AND little Miss Rylan is wearing big girl undies! (Maybe instead of saying it's been an EVENTFUL week, I should say it's been a week full of mishaps, messes, and tantrums??!) I will spare you the adorable pictures of little naked buns running away from the camera and down the hallway, and leave you with this picture instead.....

These cute little monster slippers have been THE BEST tool in getting her potty trained!!! She is one of those sweet little beings that could care less if her pants get soaked, if the barstools get soaked, if the carpet underneath Daddy's office desk gets soaked, if her brother's lego airplane that was placed a little too close to her gets soaked, etc.....BUT, she REFUSES to have her new little monsters slippers get soaked. And what would be the 1st things to pool up if she doesn't make it to the bathroom in time? Yep, you get the point.....so, if any of you are knee deep in potty training (and carpet cleaner), I URGE YOU to add new slippers to your child's wish list!!! You won't regret it! And if for whatever reason they don't work for potty training your child, you'll still end up with some REALLY cute pictures that will haunt your child for the rest of their life!!!