Yes, today has been a start of a great day for my family in San Fran, but that post will be put on hold because this deserves much more attention...
The devastating news came this morning that sweet Millie Flamm passed away.
I was shocked. I almost cried when I found out, but I believe it will come later as soon as I get home and it hits.
She was one of the strongest people I've known.
Vague memories take up some of my long lost, never-want-to-be-remembered childhood occurences of being in the hospital. That is, for weeks. For months. Again and again for years. Being away from family at times, coming up with crafts and watching endless Disney Movies, trying to smile amongst the pain of 7+ surgeries, of which I still have the scars that take my whole stomach. Not sure what was going to happen, but staying strong.
Millie, however, fought so much harder in these 3 1/2 years than I will ever in my lifetime. At this point, I am wondering how such a menacing, deviating condition can exist--cancer.
I'm still not sure why it has to exist. Many may wonder why God would ever give this to some of his precious children.
That exact answer, to be honest, I don't know. I'm still pondering about it. However, I do know that from my experiences, I have drawn closer to my Savior more than I ever would have. Our Savior, after all, offered himself to feel every sin, sorrow, and pain for each of us. If he could have done it just for you, he would have.
I also know that these children and patients have been some of the strongest to live.
Millie, for instance, has increased my strength and perseverance. Even in my early adult years, just the thought of "this is painful at the moment," would be silenced by thinking how courageous and strong Millie (and Tyler) were.
They weren't afraid to be themselves. I've seen pictures and videos of Millie in the hospital still being silly and looking for fun. She persevered with a smile on her face for as long as she could. Tyler also impacted my life and showed an even greater value of having good friends and family around while reaching out to others despite life's hardships.
Their experiences have influenced thousands (including Justin Bieber--you can read that post on here of how he came to visit Millie.) I'm only one of those thousands whom they have influenced.
Their families fought hard as well. They have given the best support for their daughter and son and each other, as well as having received help and strength from others.
Millie fought Leukemia twice until age 7, and Tyler until 17 (almost 18), but they now live freely without pain.
So, if you are reading this, let's take a moment and remember Millie's example and how she spread joy.
To all my "Cysters" or "Fibros" or anyone else who may need an extra push or encouragement, let's remember how hard she fought, and how she stayed strong amongst life's greatest challenges.
Both her and Tyler left a legacy.
Let's remember and live it.
Just seeing this made me picture Ty giving her the biggest hug for everything she went through as soon as they both met up in Paradise. I'm sure he's been her guardian for a while and now they can help and encourage others who are still fighting.
How have I already finished 2 years at Byu (and still not exactly knowing what I'm going into hahaha)
How did my "little" bro get this tall?
How is Brandon the last one as he is graduating next year?
And how did Brandon get so buff? ;)
This was 2 years ago:
Smile Joshie :)
Yes, I remember I had the worst cold that graduation day making me snuffling and sneezing all day.
Other than that it was a great day with family and friends while being glad we were done with high school and moving into the adult world (hahahahaha....)
Where has the time gone?
I know this may be another one of those annoying reminiscing posts, so moving on...
Other good things, on top of graduation:
Josh was ordained an Elder. Yes, you heard me. That's right. Having the priesthood in our home again feels so incredible. It makes a difference. There have been long periods of time in my life where I didn't have it close by, and Josh has worked so hard for this. I'm incredibly proud of him!
Last but not least, I know I have said this before but now it's official....I'M OFFICIALLY DONE WITH THE 25 MINUTES OF TOBI!! Bam. Like that. In August I will be starting the Tobi Podhaler as part of my 1 every 3 months worth of Tobi to keep Pseudomonas away. This Podhaler only takes 2 minutes instead of 20-25. That saves a little over 24 hours of time each month I'm on it! I mean, sitting there breathing in an absolutely disgusting med for 25 minutes is not how I like to use that time when I could be doing other things. I cannot express how glad I am for scientific advancements and discoveries. This is why research and trials are crucial. Next big stop: the new Kalydeco. I won't even go into how anxious and excited I am for that :)
Alright fellas, I gave in. I wasn't sure if I would post it because I bawled and cried some more when I opened it. Embarrassing? Ya.
However, the feeling was overwhelming that it was where I needed to be. The fact that I put all over my paperwork "I need to stay in Utah otherwise my health insurance will not cover me!" (that is roughly up to $15,000 for meds each month, $27,000 for each hospital clean out, and $25,000 for a bottle of Kalydeco whenever it comes out), that I later found out that piece was overlooked by the mission department, but that everything has been falling into place since is remarkable. It sure shows Heavenly Father assigns each missionary to where they need to be.
Here's the vid of me opening my call. I decided to add a little music to it since the song was perfect, but the editing took for.eh.vur. Little did I know editing music and adding it to a video would require several programs, 9634985679346 hours, and almost wanting to chuck the computer across the room by the time I finished it.
(P.s. all the "She's going to Boston"'s were because those on Skype didn't understand me when I read out where I was assigned to.)
So, if you wish....
How has it already been almost 3 months since this happened?
Only 36 more days.
A major change happened last night. I honestly don't think it hit until I stepped into the doors.
Entering the temple for the first time to receive your endowment is an incredible experience.
I can't say much, but that the spirit was strong and I felt the comforting assurance from the Holy Ghost the whole time.
Some moments felt like Deja Vu.
Some were things I already knew.
Everything else was new knowledge gained.
I can't express the feeling the night before last night, when I felt the welcoming assurance of my Heavenly Father into his very own home.
Now, I feel more secure in my life.
I am still vulnerable in many ways, but a new feeling of strength and growth that took its place and I believe it's staying for good if I keep the commandments and sacred covenants made.
Eternity does exist and we're only living in a pencil dot of time.
There are many of Heavenly Father's temples in the world, and there are no places like them.
For those of you who don't know much about Cystic Fibrosis, go here: https://www.cff.org/
Did you know that they (to the best of my knowledge) finished phase 2/3 for Kalydeco?
That's huge.
I don't know the exact changes that the new Kalydeco pill will play in the majority of CFers lives, but it's supposed to reduce mucus production, making it easier to breathe.
It's supposed to increase lung function and digestive ability, including absorbing nutrients better.
We may have less salty skin.
Possibly less medications to take.
Spouses with CF who may be struggling regarding fertility may actually be able to have children.
PFT scores will go up.
Less hospital tune-ups will be needed.
And much much more.
Because it sounds like it will feel like a cure, even if it is not.
I have a lot of hope towards progress, especially since it is picking up pace.
For instance, the new Tobi Podhaler will save at least 13 hours per treatment cycle.
Moving on, my mission preparation has brought up some new worries and changes that the church has never faced before. I won't go into detail because I've decided to leave it in the Lord's hands and it's his mission, not mine. However, during the stress, phone calls, miscommunication, etc, it all sums up to me thinking "I NEED A MIRACLE!"
But while sunburning enjoying the sunshine today, I thought, "No, this is a miracle. Each day is a miracle. The miracle is now."
I still hear stories of my fellow CFers fighting each day. I've seen graphic images of pre and post lung transplant life. I am constantly touched seeing and hearing others lending support and care.
Through compliance, we still take our pills at morning and night and throughout each day. We have strap on our vest and tolerate some tar-tasting meds that we breathe. Exercising doesn't always come easily as there may be the sensation of a corset being wrapped around our chest. There are hours given up to take care of ourselves, even if it means we are tired. Sometimes we quietly leave events early or cancel out because we are not feeling well, need to do an extra treatment, or just plain need to give our body a break (and, as a side note, I've accepted is is rarely happening during my mish)
With all this being said, CF is not always easy. There are ups and downs but we as not only CFers, but friends and family can lift each other up. If you may feel stressed, down, or wanting to throw your hands up in the air yelling "I NEED A MIRACLE!" when all seems to not be going as planned, you may step back for a moment and realize "the miracle is now." We still have loved ones around and if we don't see the light at the end of the tunnel, just be glad you're breathing.
In conclusion, one of my fellow Cysters shared this lovely image on Instagram. You can search more about the boy who came up with the phrase "Sixty-Five Roses."Making it easier to say doesn't make it easier to live with. However, there is so much hope in store. I don't know when Kalydeco or a cure will come in place, but it's only through the help given. If you know someone with CF or have it yourself, extend support and spread awareness and the hope that lies ahead. Let them know you love them. If you are a CFer, keep fighting. One of my favorite quotes is by A.A. Milne: "You are braver than you believe. Stronger than you seem, and smarter than you think."
If you feel you need extra hope or know someone that may, here is a video from a leader of my church, Jeffrey R. Holland. Even if you are not LDS, I invite you to listen to him as this talk is a sample of the hope and truth that comes from the gospel I am grateful for. It is applicable for anyone.
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