Saturday, December 31, 2011

Salt in our blood

Where your at can you feel pain? Can you see the hurt that's left in this world? Do you see things I don't?

At this time I'm at a loss of words that usually have little to no comfort for my wondering mind. I'm stuck between a rock and a hard place. What do I do? I wish their was a guide book for grief but sadly there is nothing to mend this broken heart.

I see a lot of others who are close to other cfers and honestly I'm doubting my strength and determination to bond with these cysters and fibros. Nothing can prepare us for the loss of our brothers and sisters in war.

We all fight this disease we are a group of determined soldiers who are prepared to fight for the end in many ways we were born to fight it comes with the territory of cf...the salt in our blood is a true tell of the strength we have. Nonsense to most but to me I feel like that's what we were made for...for fighting and testing the boundaries and limitations.

When we are called to war we give it hell every time and when it's our time to look our fate in the eyes we do it with such honor and pride others should be amazed but anyone who know us and our hearts and our determination it's nothing new to them. It's just us doing our war dance. Preparing for exactly what we were made of...given them hell

So I think in times when words are cheap go by the action and do exactly what we were born to do...fight. It's all we know how to do and we do it well.

This is war

Cystic fibrosis rules my world that is no exaggeration or white lie.

It rules and controls every aspect of my world.

I try to show it who is the boss and I try to pull the famous "because I said so that's why" but it calls my bluff. It has grown stronger then me

Their once was a time when I was the boss and I ruled our world but like many things it got an attitude of its own and more importantly a mind of its own and when we were battling head to head for control it showed me its power and much to my surprise I caved and I let it win. I let it have the upper hand and ever since then we constantly go to war and at one point I was the leader for a short time. It waited and it saw my weakness and it attacked and with little support I gave in.

I train regularly preparing myself for our next big show down and I know one day I will win the battle and the war.

Cystic fibrosis you better watch your back cause I'm coming after you.

Thursday, December 29, 2011

Dear Megan

It breaks my heart to see the beautiful present Megan's mother sent me. I wish it was Megan who sent it. I wish there was no need for such a meaningful present.

I think it's common in our cf community to experience survivors guilt. I find it most difficult around major holidays.

I feel like I question my presence in this world when a beautiful soul like Megan was taken so soon and with so much life to live. So many things to accomplish.

I think I can say with confidence that there is no hurt like loosing someone you admire and who look up to and look to for strength.

Dear Megan,
Missed you more today then yesterday, how was your first Christmas in heaven? Did Jesus let you sit next to him at his big celebration? I bet you loved being so close to him and Christina. I couldn't imagine the hurt to not be at home for Christmas but in sure you got the best view of your god babies on Christmas morning! I think of you often...everyday. I wish as would of gotten the chance to meet and go out and dance all night.

I'm afraid Megan. I don't know how long I can keep watching others die from cf and watching others get weak. It's a true test of my strength. I wish this was all a bad dream but no matter how many times I wake up your never there. Megan I miss you but I find peace your in a place where you belong among other angels.
Xoxo Jessica

He is my Aaron

My thought process is wacky. I look at something and I automatically go to the dark side of things. My biggest fear is for others especially the ones I love the most and hold a special place in my heart.

I see things and I fear the possibility of regret for him. I'm afraid he will look back and have moments where he says what if...?
I shouldn't of been so quick to leave and not give that last goodbye or the hug she wanted so badly.

I fear the regrets he will have. I hope no matter what happens between now and that moment I hope he never forgets the bond we have and the times together are always held so close to my heart I keep them with
me at all times. They are my fondest memories.

I fear he will look back and see moments where he wasn't getting the attention he needed and blames me. I took and still take a lot of attention and focus away from him when he is such a great man. He's becoming a wonderful boyfriend and he's grown so much I have nothing but pride in him and the man he is. He might of felt in the shadows of me and my cf but he will always be my star. I told him I want him to live for the both of us traveling and doing things I can't...when he accomplishes things I feel so much pride that I cannot contain myself. He is always in my heart with everything he does. He is my brother my best friend...he's my Aaron.

Monday, December 12, 2011

Making memories

It seems like we're loosing so many strong fighters in our community. And right now this is a time to grieve our losses and pay respect to those who have gotten there wings; we all do it differently while some take time away from Facebook and emails while some just celebrate the times they shared and reflect on the friendship that once was.

If this tells me anything about life it seems like it all ends to's not long before where standing reminiscing about the things we should of could of done. One thing I enjoy doing is making memories and you never know when your making a good one.

I'm not sure if I shared the news with anyone but Matthew and I bought a home...with wheels on it! We decided we wanted to travel and this is the time in our lives to do it. We have had this vacation planned for months and it couldn't of came at a better time...I needed a vacation after loosing Hannah and Spencer. No I didn't know them personally but I feel the loss and it weighs heavy on my heart none the less.

So Matt and I are on the road just the two of us making those memories. We're going to pismo beach hearst castle and ending the trip in solvang. It's our vacation. It's our time and I know it will be memories that will last a life time.

Wish us luck and safe travels. Wish us time to bond and become closer then we already are but most Of all send us peaceful thoughts.

Peace love and hello kitty

Friday, December 9, 2011

Soupy sails Lol

This scene in friends keeps replaying in my head and every few min I let out a chuckle and think soupy sales!?

Pheobe -(as Mrs. Adelman): I KNOW WHO IT IS You remind me of-- evelyn dermer.
-'Course, that's before she got the lousy facelift.
Now she looks like soupy sales.
- pheebs, who's evelyn dermer?
I don't know.
-Who's soupy sales?

Pheobe's massage client dies while Pheobe is giving her a massage and Pheobe believes her spirit is now in her...she keeps having these "elderly" moments and it's just a knee slaper.

Soupy sales where do they get this stuff. Oh friends you crack me up but it's further proof I should really find a hobby or something better to do with my time.

Soupy sales....gets me every time!

Wednesday, December 7, 2011


When I was a young girl I dreamed just great dreams...many dreams like most children dream. They always were changing constintly. Always a bigger and better dream then before. I once dreamed to be the best woman's rock climber and everyone would ask me what pushed me to be so great and I always stood tall and said CF was something I was born with and even though it has caused some bumps in the road I'm stronger then cf.

After that I wanted to travel and study in Australia. Going places by myself and being an educated person despite my disease.

My greatest ambition came later...wanting what I knew was imposibible. A family. 2 babies and a home and this was my greatest goal on life. But reality sank in and I realized the risks and even tho I accepted the possibilities I was never okay with loosing a child or leaving my child due to my health.

My dreams now are small and less ambitions but they are my dreams my thoughts and even if I never complete the things I always wanted to I hold strong to the hope that others can do it despite Cf or any disability

My dreams are small and humble compared to what they once were. I once was able to concour anything but now I feel weak and choose my battles much more cafefully.

I accept the things I cannot do and am thankful for the things I can still do. " Different but not less" - Temple Grandin

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