CF…yes it can have benefits

I have been thinking alot lately about our recent trip to AZ & CA. The memories are starting to fade, quickly getting replaced by the everyday life of being back home. I have laughed to myself, had a smile that even the sideways rain can’t diminish, but most of all am realizing how much our trip was a blessing for our quiet isolated souls.

When we realized that our trip to AZ was going to happen, my mom and Richard soon put the idea out on the table to make the long drive to Disneyland, yes for some of you that live in the real world a 6.5 hr drive is nothing, but for those of us here in ketchikan with only a 33 mile stretch of highway, 6.5 hrs sounds daunting!!!

At first I will admit I didn’t like the idea, for a few reasons, I was unsure of how much the kids would appreciate the trip, and also wasn’t sure if they were going to be big enough for the rides. When we researched the cost, I was put off. I couldn’t comprehend spending $500 to go to Disney for ONE day, then gas & hotel on top of that. Being a one income family, throwing that much money down after the money already being spent to get to AZ, I couldn’t stomach it. Richard soon came to me and told me where his heart was. He wanted so badly to go and take our little Princess there, the one who has a custom made Princess closet, packed wall to wall with Princess dresses. The little girl who insists on wearing her Princess heals to church, and stacks every piece of jewelry on top of the other and risks falling over from her “bling”. He told me that he wanted to go NOW, that he wants to give her everything he can and have no regrets. For some parents to have this mindset I would be worried about the attitude a child would have growing up with this parent, BUT for a little girl who has scars on her arms from the countless IVs she has had, and the child who spends hours upon hours of therapies, I can’t argue that she needs him. She needs her daddy who is the knight on the white horse that will do anything to save his princess.

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We loaded up our babies at 11 pm, deciding that if we had to drive with 3 kids who were starting to hate the car after a week in AZ, it would be best to do at night. We started the trip off with a prayer of protection and thanksgiving to God and got on the road with more anticipation then the sleeping kids. It was a beautiful drive, we saw the stars in the desert sky, took turns driving, and had great theological debates with my mom.

Our 1st day in CA we went to Legoland. I had never heard of the place, but everyone we talked to said it was great for younger kids. We had gone to IHOP one day in AZ and found coupons there for buy one get one free!!!! So it was decided that since we were driving to Disney we should just go the extra hour and stop there as well. We had brought along a letter from our CF docs, mainly due to the CF mom group im a part of. Some moms had shared their experience of using the letter to allow them to get a guest service pass. This pass allows the person with a medical diagnosis and their attending family to by-pass the rides’ wait time & lines! The rides were all accustomed to our kids’ age group. We were able to walk up to the exit of each line and almost always get on a ride right away. I will admit I felt guilty and slightly silly using this guest pass in the beginning, BUT as the afternoon sun came out and temp rose, my little CFer started to decline quickly. She fatigued so fast, got super cranky, and was off. So we just continually had her hat on her, sunscreen every hour, salt packets ready, along with gatorade and water bottles handy. It was so much fun to see her experience something new, to watch her have this new found freedom. Her daily life here in ketchikan is so limited, even aside from CF, there aren’t alot of new experiences to have here. We literally walked our legs off, soaked up tons of VitD and spent 6 hours there, with very few meltdowns! We talked with other families who had the pass, explained Ezzy diagnosis, and had one mom tear up and tell me Ezzy would be in her prayers.

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Our next day was one us adults could barely contain our excitement for! We decided that we would go and get a big breakfast at Dennys, which was such a good idea, we all needed to pack in the calories for another day of walking. We stuffed our faces and bellies!

We walked to the tram, hopped on and found ourselves at the main entrance in just a few minutes. We again brought our letter along, but this time were slightly hassled by the guest service rep. In all honesty, I can’t blame them. There was my husband trying to explain the disease and its effect in heat, with my vibrant, full of energy 3 yr old running circles around him. Once my husband found the right words to say we quickly found ourselves with a guest service pass.

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We had the chance to ride EVERY single ride that the kids were tall enough. Which if you have ever been to Disney you know that this is impossible to do in one day. We saw the confused faces of people as we would walk up through the exit, and then be met by shocked faces from all those who were just seconds away from getting on as we would be ushered on a ride immediately. I couldn’t believe the genuine attitude of the staff, they would smile, never seemed annoyed when we would show up, didn’t give us a doubting look as they saw our family, and would engage with Ezzy and Cayden and get them hyped for each ride. My kids LOVED the Casey Jones train ride, Ezzy insisted on sitting in the cage box! The Buzzlightyear ride is still talked about in our home. Richard insisted on taking them on the haunted house ride…my mom strongly refused :)…I was weary, but Richard wouldn’t back down. The Pirates of the Carriabean was the one I couldn’t wait for, but quickly became the one I had so much remorse for going on. You see there is a point you go through steam, I was about ready to grab Ezzy and swim to shore…not kidding, you see we aren’t suppose to have her around steam, because its were a very bad bacteria lives, one that is deadly to CFers, its the very reason we can’t take her to our indoor swimming pool. I was about ready to cry and leave after the ride, but Richard reminded me that we were here, trying to give her a life outside of CF, and that we had to trust God for the protection we asked of him each day.

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cayden had the chance to meet one of his favorite characters, I have watched TOY STORY more then most would ever want too! MY son being all boy decided that after this pic was taken he tried to knock Woody’s hat off his head..we quickly ushered him away before he was taken out by Woodys bodyguard :/

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We ate the dolewhips that my friend Kelley told us had to be consumed. We almost stayed the whole day without a break, but when sun began to set we realized we needed to go back and put on some extra layers. We quickly ran back to the tram, got changed at the hotel and went right back. My mom and I had been telling the kids of the amazing parade they do every night. Richard had never experienced it before in all his years of going to Disneyworld. I decided that our kids needed something sweet while we waited, trying to keep our eyes open after a super long day. I went to grab 2 churros to share. I shared with the lady that we had traveled from AK with our 3 little ones and were having a BLAST, I watched her throw 3 churros in the cinnamon and sugar, wrap them up and tell me “you can’t have just 2 with 3 kids” she gave me a warm smile and a wink, and I don’t know why, but I found myself choked up. I felt the tears rise up and all I could say was “bless you”.

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You see, I wasnt shocked by genuine kindness from a stranger, that wasn’t what caught me off guard. It was the fact that I watched God provide time after time for this trip. We had situations arise, seeing the difficulty and challenge staring us in the face, but then watched it all fade away as God stepped in and took over.

On days like today, where all I have done is wash, fold, and put away 9 loads of laundry, while staring out my window, dreading the 10k I have to run in sideways rain, I am being reminded that God took care of us. He allowed us to leave this island, go and experience things as a family, and have chances to wake up and not live CF every second of the day, like we do here.

One of the best parts of our CA trip was meeting a friend I have had for the last 2 years. We were introduced from a mutual friend, because we both have daughter with CF. She has been a blessing, sometimes a therapist, and I doubt she knows it. We will have lengthy emails back and forth, update each other with the girls were sick, but most of all she provided me an outlet, one that I could go to and say what was on my heart and know that I was understood. I had wanted to meet her, but was unsure how to orchestrate it. She kindly initiated the meeting and we sat and had coffee for few hours. I had the pleasure of meeting the mighty warrior she is raising and she got to see my lively Ezzy (at different times, since the girls can’t be around each other due to cross contamination of bacteria) We sat and talked and I never once felt like it was our first meeting. I could have sat with her for hours. In our conversation she had heard about Ezzy not being in a pool and quickly offered up hers! We gladly accepted and soon found ourselves swimming in a pool under the warm CA sun. Ezzy was scared at first, as she should be having not been in one, but soon mustered up some courage, and wanted to hang on the side of the pool by herself.

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We had so many experiences, situations, and conversations that would have never happened if CF wasnt part of our life. We probably would have held off Disney until the kids were older, and Im so thankful we didn’t. We would have spent ALL day at Disney and still not have ridden every single ride, if it wasn’t for CF. I never would have met a courageous mom who has made her life to be an advocate for her child, the one who is has no shame in saying “I have cystic fibrosis”. So today as I am recalling the recent events in our lives, I am finding myself in some ways thankful for CF. It doesn’t make sense, but today I can truthfully and wholly say, thank you God for trusting our family with CF.

2 thoughts on “CF…yes it can have benefits”

  1. Wow Sarah you are so eloquent. You amaze me as a person and as a mom. You are awesome and awe inspiring!

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