Friday, December 16, 2016

Raising Awareness with the Xtreme Hike

What is Cystic Fibrosis?
Cystic Fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps the bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients. 

Everyday, is a fight with cystic fibrosis. A fight to live. A fight to breath. I am not even the one with CF and it just… crushes you sometimes. The fight. It’s just never-ending. There is no “breaks” You don’t get to just take a day off. You have no choice, but to just fight. And keep fighting. Until we win. And we will eventually win. 

I remember the day they told us Molly had cystic fibrosis, so clearly. It was just a typical morning for us. Molly was just one week old. My husband, Chase, stole her from our room so I could get some sleep and he was making breakfast for us and our two older children. At some point he came in and roused me awake. I just remember his face. He just had this look.  He had the phone still in his hands and was holding it to his chest like there was someone still on it. And then he told me. Shalyse, the doctor called and said Molly has cystic fibrosis. I was still groggy but I bolted straight up and said what?! He repeated it but he didn’t need to because I heard every word. I just laid into my pillow and started sobbing. I just laid there and ugly cried. I just cried and cried. I could hear him talking to our pediatrician, who was apparently still on the phone, and then he came over and just held me. He cried with me and kept saying I'm so sorry, shalyse. Im so sorry. That was the moment cystic fibrosis changed our family’s lives forever. I remember having to call our parents and siblings to tell them and I didn’t want to. Because every time I told them it just reminded me of that moment. That crushing despair and feeling of hopelessness. 
The day we met with the doctors, something flipped for me. I don’t know if it was something someone said or what it was. But i just started feeling like, girl you need to get your crap together and man up. you can do this. It was the feeling of hope again. Hope and determination. I wasn’t going to let cystic fibrosis win. I was ready for battle. 

That first year…. Man it was rough. I still had so much grief and sadness. But gradually I gained more and more hope. The more time went on, I quit treating Molly like she was a time bomb and like she was going to leave this world as quickly as she came into it. I learned a lot about myself that first year. My strengths and weaknesses. I learned a lot from Molly. She was literally a bright shining light in our life, a true sunshine baby. She was smiling always. Just soooo happy. Her infectious laugh was all the medicine we needed to heal. 

Life with cystic fibrosis…… it’s complicated. All the medicine, Breathing treatments, insurance battles, doctors appointments…. soooo many doctors appointments. Just the day to day stuff. It’s a lot. It’s an everyday fight to live a long and healthy life. The type and severity of CF symptoms can differ widely from person to person. Treatments are tailored to each individual’s unique circumstances. For Molly, she currently does three inhaled medications along with her vest machine. These treatments help to break up the mucus and keep her lungs clear. She has 10 other daily medications and supplements she takes on top of her two breathing treatments. And 2 of those medications were just recently added into the routine. She does this everyday just to stay healthy. So that she can live longer than the median predicted survival age of her 30’s. My age. This. This is a dramatic improvement from the 1950’s, when a child with CF rarely lived long enough to attend elementary school. Because of tremendous advancements in research and care, many people with CF are living long enough to realize their dreams of attending college, pursuing careers, getting married and having kids. While there has been significant progress in treating this disease, there is still no cure and too many lives are cut far too short. When a group of parents started the Cystic Fibrosis Foundation in 1955, they set their sights high - to advance understanding of this little-known disease, to create new treatments and specialized care for their children, and to find a cure. The CF Foundation has carried these goals forward and is working tirelessly to find lifesaving new therapies, and one day, a lifelong cure for all people living with this devastating disease. Nearly every CF drug today was made possible because of Foundation support. This year we decided to help raise awareness by participating in an extreme hike hosted by the CF Foundation. We will raise funds in the coming months and then in May of 2017, we will hike the Grand Canyon rim to rim in one day. By doing this hike we hope to meet our goals of adding tomorrows to the lives of those living with cystic fibrosis. Adding tomorrows for Molly. To give her the best chance at living a long and healthy life. Help us by sharing our story. Help us raise awareness by donating what you can be it funds, time or love. Help us continue to get closer to CF standing for cure found. 

Saturday, April 5, 2014

Disneyland 2014

Need I say any more?!

I guess I will so you know how it went. Let's just say this trip has been my favorite one so far. I say so far because we WILL go back. Again, and again.... and again. I was thinking about it the other day how many times we have been since we were married. Because that's when the obsession really started.
2007- the year we were married. We went for our honeymoon.
2008- we went for our one year anniversary.
2009- we skipped this year because we had a baby.
2010- I was barely pregnant with Claire, we were only going to go to the beach for our third year anniversary(without Kael).... but we couldn't resist, so we snuck over for a day. And on the plus side we met some friends who just happened to be vacationing there at the same time.
2011- we went twice this year. Once for our four year anniversary (see a trend) and then we decided to go a second time right before Kael turned 3 because it would be the last time he would be free.

We've been too broke and busy to go in any year following. But I have been dying to go and just dreaming of the day we would get to go again. Disneyland is definitely not a cheap trip. We have been extremely blessed that we have been able to go as many times as we have. Some.... ok lots of people think we are weird because we love Disneyland sooooo much. I don't know what it is about it but every time we have gone it's been a very different experience, and every time it's been.... well, magical.

People also think I'm crazy for taking a baby. I've done this twice now. It's actually a good time to take them. It's really not as bad as people would think. You don't have to worry about buying them anything-food, toys, ect. They don't want to run away. It's great and low key.

Here's just a few of my tips that I've learned:
#1. If you are going and have a baby. Take them before they are mobile. No crawling, or new walkers. If they are 'immobile' then they are happy to just hang out in a baby carrier most of the time. You can take them on any ride that doesn't have a height requirement. And they sleep better while being held too. It was super easy and not a hassle at all to have the babies there and with them in the carrier you still have your hands and arms free. They don't require much. They are still at a stage that they don't require a ton of entertainment, and the only food you need is  your boobs, (or bottle stuff.) You can keep it super low key. Just a few blankets, binkie, diapers, and a spare outfit. (you know, for that explosion that always seems to happen at the most inconvenient time.)

#2. Get a stroller pass!!!! This was so awesome. We have used them every time we've taken the kids and they make life at Disneyland so much easier. Seriously a life saver. This year Kael was tall enough to go on ALL the rides except I think 3, but Claire and Molly weren't, obviously. What's a stroller pass?  It's for this specific problem. When not all of the family is tall enough to go on the rides. How it works.... We had our family of five and then three other adult family members who joined us. So we would split up and most of us would go on the ride and when they would go thru the line they would ask a cast member for a stroller pass. Then they would go on the ride and bring back the 'stroller pass'. They are good for three people. Then any three people would take the pass to the cast member and you would either get right on thru a different entrance or you would go thru the fast pass line. Something they have been doing is asking you to show the kid(s) who can't go on the ride before they will give you the first pass, then you go thru the line and get the second and the official pass. It saved us so much time from having to wait in line twice.

#3. If you don't mind if your group doesn't ride ALL together get in the single rider lane. This was awesome too. The new ride in cars land has this line. And if you get in the regular line plan on waiting close to 2hrs. We used the single rider line and waited a combined total of about 20 minutes from start to finish for our group!! How did we accomplish this? The first people who went were the three adults and they got a stroller pass. Then they went thru the single rider line and waited ten minutes. They got lucky and ended riding all together. Then we switched, Chase, Kael and I took the stroller pass and they took us to the handicap entrance where we got right on. We finished the ride and met back with our group. Not all rides have the single rider line, but use it if you can. We wouldn't have gone thru the single rider line with Kael because he's too young to ride ALL by himself with a bunch of strangers. But if you have older kids who don't mind riding alone, this line is awesome and well worth the time you save.

#4. Spend at least 3 days at the Disneyland Parks. This is the perfect amount. This last time we would have totally spent longer, because we were having so much fun. If you spend three days there it gives you enough time to hit all the rides and shows without running around like a crazy person. You could do it in two days but you really have to plan well and not skip around and you still might not hit everything. That extra day really makes a difference. We were able to hit our favorite rides multiple times and we weren't rushing to the next thing. We were able to just take our time and enjoy the fun memories. And that will lead me to my next tip.

#5. Save your character meetings for the third day. You will, most likely be standing in line for a while to meet characters. And they only allow so many people in the lines for the characters that wander around. My suggestion is first thing, on the third day, is go straight to the royal hall. Where you meet the princesses. There is a mix of a few different ones. This would be the best way to meet several princesses at once. Then thru out the day take the time to watch for characters in their 'special' spots and get in line quick. It worked out so great to do this the third day because the kids were able to meet enough characters to make them happy. They weren't interested in meeting every character so you don't spend all day doing this but it makes it less hectic.

#6. Pack little things to do while standing in line. I had little bubbles and snack necklaces for the day. And then glow sticks for the evening. The bubbles would keep them entertained, and the kids around them, while standing in those long boring lines. The snack necklaces were great so they weren't constantly asking for food and I wouldn't have to dig in the stroller or diaper bag for something. We bought glow stick wands and swords at the dollar store before we left. They sell light up stuff at night, but they are super pricey, so the glow sticks would keep my kids happy and they wouldn't ask for disney light up stuff. Good for me and my wallet.

#7. Go during off season during the middle of the week for the least crowds. For us we have learned that the best time to go is that first week in March because that's when our anniversary is. But anytime during off season will work. One down side is, that a couple of the major attractions are closed because this is when they do maintenance on them. So you just have to decide if you are ok missing the ones they have closed.

#8. My final tip would be. Just RELAX. Disney has gone out of their way to make this experience a good one. They are very friendly, almost always. We are all human so we aren't perfect. But if you lose something, big or small, go to lost and found and they will help you out the best they can. There was a lady who's son lost his shoe. So they tried to see if someone turned it in at lost and found. They gave them a voucher to buy a new pair of shoes so that her son wouldn't be barefoot. If something happens don't freak out. Talk to a cast member and they will help you work out whatever to the best of their ability. Disneyland is full of magic, be polite and relax, and you are sure to have the best time.

Those are my few tips. Now on to the pictures.

 The kids were so excited to meet all the princesses despite the look on their faces. Kael was being super shy but he was loving it. Claire could hardly stand still she was so excited.

 Snow White is Claire's FAVORITE princess. She was being kinda snotty right be for we met her so she was crying. Snow White to the rescue to dry her tears.

 This has a cute little story.
We were sitting outside of the entrance of space mountain ride after eating lunch. We had just taken a potty break with the kids and as I was walking back. Chip (or I think it was Dale) came over to Molly to 'play'. I was by far my favorite memory because he just sat at played with her for a good ten minutes or so. She loved it! I thought she would be afraid but she loved him and kept grabbing at his nose. 

 Then Minnie Mouse came over a few minutes after and did the same thing. This was such a sweet thing because the characters are always getting bombarded by people to get them to take pictures with them and these two people came out of their way over to us, to give our sweet Molly some loves.

Claire got to meet her two most favorite disney characters and couldn't be happier. She was set the rest of the trip.
This was the first time I went on Tom Sawyer Island and it was so cool. This was a moment when it was just Chase, Kael and I and Kael was loving all the caves he could crawl in and explore. 

Disneyland is our favorite vacation. We have always had a great time there, but this one was special because all the kids were experiencing something for the first time. Kael got to ride the big rides, Claire's dreams came true when she got to meet her favorite characters and Molly was on her very first disney trip. Even though they are young and won't remember much, I feel so lucky that we were able to make the trip happen. 

Till next time Disneyland..... hopefully it won't be too long until we meet again.