Saturday, January 16, 2016

CF Climb - Landen's story

This year as conversation regarding the CF Climb began to float around the house, Landen asked if he could climb this year. Knowing that kids are full of energy and that he will very likely beat this old mom up all those stairs, I told him if he really wanted to climb this year he could. I then wrote down a few questions on a piece of paper, to "interview" him regarding the climb:

Question #1: Why do you want to do the CF Climb this year?
  • Landen's Response: "To raise money".

Question #2: What would a cure for CF mean to you?
  • Landen's Response: "So my sister would not do her stuff". 

Side note: (For whatever reason and I have no idea how it came about but we have always referred to Olivia's vest and nebulizer treatments as "her stuff", this is what Landen is referring to, that with a cure, she'd no longer have to do her 1/2 hour treatments two to three times/day).

Question #3: What is it like to be a brother to a sister with CF?

. . . wait for it . . .

  • Landen's Response: "it is cool"

Isn't that an awesome response?! When I wrote that question down, I didn't know how he'd respond but I guess I wasn't expecting that. I was expecting it's hard sometimes, or I feel left out sometimes, or what have you. I guess I shouldn't be surprised really, for as proud as I am of Olivia, I'm equally as proud of Landen. I know it's not always "cool". I know there are times he feels left out. I know there are times he hurts. I know there are times he's sad and it's very hard to deal with. We talk about it, we muddle through but from his response I gather that the times "it's cool" far outweigh those times when it's not. What an amazing big brother Olivia has!

Thus Landen signed up and will be climbing in the 2016 CF climb this year. If you'd like to donate to the climb in support of Landen, please visit his CF Climb Page below:

Thursday, January 14, 2016

Proud Mom

With CF, I've always tried to take the approach of telling Olivia how it is, telling her the truth about her CF without sugar coating it too much and telling her that it's a part of who she is; it is a factor that makes her different, unique and special and that each and everyone of us is different even if we don't have CF. If she asks me a question about her CF, I always matter of factly tell her and describe to her what it is she wants to know, kind of with the whole, "it is what it is" attitude.

She's a smart girl, she knows she has CF, she knows that not every other 6-year-old child does treatments ("her stuff"), like she does two to three times daily. She knows not every child must visit the doctor as often as her, take meds like she does nor do they have a g-tube button. In fact she's told me that she is the only child that has a g-tube button in her class.

For as much as Jeff and I didn't want Olivia to have to get that g-tube well over a year ago, we kept our fears, uncertainties and feelings about it to ourselves. Prior to her surgery, we told her that it was going to help her - it would be a good thing. We continue to tell her that her button helps her grow and thrive and be the best of her that she can be. Deep down, I believe we knew her g-tube would end up being a blessing in terms of Olivia's health and weight, but we also knew that up until that point Olivia didn't look any different than a child without cf. This button, this g-tube would change all of that. It was a sign we'd see one that wouldn't go away, it would be visible reminder of her cf. Back then, that was a hard bite to chew. I now embrace it and I learned to accept long ago that physical signs or not, Olivia is different. We are all different and unique in our own way and that's okay.

Jeff refers to Olivia's g-tube as "that cute little button", we always talk of it as a tool that is helping her grow strong and remind her that with the g-tube when she doesn't feel like eating, that is okay because she has her button to feed her nightly. She felt and dealt with the fears and pressures to eat and eat and eat prior to getting her g-tube so she knows and experiences the benefits of it and realizes that the pressures to eat are no longer around.

Thank the Lord.

Jeff and I are by no means experts in navigating this life of parents raising a daughter with a chronic disease. We've stumbled, tripped and fell flat on our faces plenty of times as we navigate this path we are on, but we do the best we can and for all those days we want to cry, scream, curse everything that is cf, we don't (at least not until the kids are sound asleep). I have a very "it is what it is" attitude. I'm not a "glass half full" person. I know there are things in life you cannot change, despite wishing to, and I know that it does no good to dwell on this. I know that how Olivia views her cf, will be directly related to how I do. If I'm scared or uncertain or hateful, she will be too. If I try to be strong and take things in stride as they come, she will also mimic some of that behavior.

My one wish for Olivia over these past 6 years has always been that she will grow up to be proud of who she is, not ashamed or angry or feeling like she has to hide anything. I told her as she began school this year that if anyone wanted to see her button or asked what that thing was poking out from underneath her shirt, she could certainly tell them about it if she wished to, just not to let anyone tug on it or try to pull it out! We've gone over that her button helps her grow and be strong and she's reiterated to me in her own words what she thinks of it. I'll often catch her saying things followed by, "well that's because I have cystic fibrosis . . . " matter of factly with pride in her voice.

As a mom, or parent, you don't get a "grade" on how you are doing. You don't have an instructor or boss telling you what you are doing right or wrong so it's often left to wonder if you are doing your "job" okay all while knowing that you do the best you can each and every day and hope that is good enough.

Yesterday, Olivia's teacher sent me an email that definitely made me cry . . . happy tears. Yesterday as I read it, I felt like Jeff and I are doing a pretty good job of trekking this life path that we are on. For as much as Olivia loves her teacher Mrs. H, I sure think she is just as fantastic as Olivia does. I feel beyond blessed that we were lucky enough to get Mrs. H as Olivia's kindergarten teacher and I know that she will go down as one of Olivia's favorite people ever. In fact, as I was making supper the other night, Olivia called me "Mrs. H" and then she laughed and said, "Mom, I just called you Mrs. H." I of course teased her about it, all while knowing that Mrs. H ranks right up there with mom!

Yesterday, Olivia had show and share at school and was to bring something with a medial /a/ sound. On Tuesday after school, together we chose a cat, since she has plenty of those! I was unpacking her things and told her to pick out one of her cats that she wanted to share and we'd put it in her backpack for Wednesday. She came down with "Custard" a stuffed kitty that daddy had bought for her from the gift shop when we were in the hospital for her g-tube placement surgery. Yesterday afternoon, I received this email from Olivia's teacher:

" I just wanted to share this awesome experience that the class and Olivia had today during show and share. Olivia was called up for her show and share and I asked why it was special. She told us that is was from the hospital where she got her stiches from her button. She continued with telling the kids this story.... " I was in the hospital to get my button, my button helps me eat. It is something on my stomach (then she asked if she could show it). This is it and it has a tube that is hooked up at nighttime." The students were so engaged and I was SO proud of her for her sharing. I had happy tears the entire time. :) Olivia is such a special and inspirational girl that I truly admire her strength and positive attitude. Good job!!!!"

That email makes me happy and proud. Receiving and reading it was like a "grade" if you will, a boss telling an employee that they are doing their job well. To hear from someone else how amazing of a girl Olivia is, one who knows Olivia and witnesses firsthand how she behaves and acts when not around mom/family means so much. I'm thankful for that email. I'm thankful that Olivia is strong and tough and proud of who she is and owns up to all that makes her, her. I couldn't have wished for better. I'm so proud of Olivia. I've said it before and I'll say it again. Olivia is my hero, she's experienced more in 6 years than I have in all 35 of mine. She is truly an inspiration, a blessing and one of the strongest people I know. She is caring and loving and always conscious of others feelings while having just the right amount of sass and attitude she needs. Hats off to you Olivia, you are amazing and we love you so much and a big thanks to Mrs. H for helping Olivia to adjust to life away from mom all while learning to grow, prosper and live life.

Today is a: #proudmomday!

Tuesday, January 12, 2016

2016 CF Climb - What, When, Why


2016 CF Climb benefiting the Cystic Fibrosis Foundation

Join Team Olivia-Polaris for the 2016 CF Climb to raise money for the CFF on behalf of Olivia. We will be climbing as a team at 10:00 am. 


Saturday, February 13th, 2016
10:00 am
IDS Center, Minneapolis, MN


So that days of this:

can instead be spent like this:

Join our team or make a donation by visiting my CF Climb page: