Every Day Life What a Pleasure

[Jennifer and Jack]

I spend a great deal of time on the internet, on Facebook and on the page I am the moderator on. I usually start out doing a treatment with my stuff and hours later I am still there.

I am fascinated by people's Facebook statuses. Some people post simple about the every day stressors of life... How their kids are driving them crazy, how they can't wait for school to start again, how their job sucks, how their spouse pissed them off...... 

Somehow for me.. it almost never fails that when I see a post about a parent complaining about their child and how they can't stand it ( which I understand is normal) I always see a post about one of my friends who have lost their child, who is holding their child in their arms as they are on a morphine drip taking their last breathes from CF or another disease..... Life and Perspective.

Sometimes I see my friends who are still working in the ER making statements about how much they hate their job. They are overworked, I know, The ER is tough.. but to someone who had that ability to work there taken away.. I have to bite my tongue and accept each person is on their own journey.   I no longer want to run people over with my shopping cart who I see in the food store when I am shopping.

I have been wanting to write an update for a while but I don't quite seem to be able to put into words how I feel. I can't adequately express the utter and sheer joy and gratitude I have to be home, in my own house, to have my sweet Jack on my lap. To be able to clean my house, do laundry, cook food. To do laundry. I know you think I must be sick with fever to be grateful to do those things...I bubble with joy and savor every precious minute.

You don't know how much you appreciate the normal things until you can't do them anymore. You don't know how it feels to be able to take a shower for the first time after having a tube coming out of you for almost a year. I swim in my garden tub every night. I go all the way under the water.. Something I dreamed of being able to do for almost a year.

I walk Jack two to three times a day... I am off oxygen now, except at night.. What an amazing feeling to be able to walk down the road without choking and drowning in my own secretions...I know the infection will come back but for now, I am alive and breathing.

The MAC infection in my lungs is still there but beat down... I am off treatment for it. I am just on my regular CF treatments that still require a few hours a day of time but when you are used to non stop, no break, a few hours is NOTHING.. It is all perspective.

Much to my doctors surprise I am four weeks off IV antibiotics and the infection in my heart is still quiet... I pray it stays that way, The doctors think it is just deep seated and it is a matter of time before it appears, I say it is gone forever and I am going to do the things I need to do such as blood work, echos and stuff to make sure but I am living as it is gone. I finally bought some plants for the summer and well I just can't go back in the hospital now, I have to stay home to water the plants. I have groceries in the house and my sweet Jack who is doing so amazingly well.

I am blissfully happy and grateful. If you would have told me what my life was going to be like now when I was a little girl I would have never imagined that I could be as filled with happiness as I am.

Every time I walk Jack and pick up his poop I smile and once cried just because I longed so hard for the days when I could do the simple things in life.

Most of the things by the worlds standards have been taking from me, my health, my career, my ability to function as an independent adult that is financially stable. My ability to plan for the future. I am left with a huge understanding that not one of us is sure we are going to be here tomorrow.

It doesn't matter if you have a terminal illness, a life shortening illness, or you are as healthy as a horse. Look at those poor young adults that were killed last night watching a Batman movie. Tragic.

More tragic to me is people who save and wait their whole life to retire, not taking any time along the way to enjoy life, enjoy the moments but just worked and worked only to pass away very shortly after they retire... Life is about living now too.

I will for as long as I can,  always look at what I have and not what I don't, I will always try to enjoy each day. I will be kinder to myself. I am madly in love with Jack and I am so grateful for him. I am grateful for the people in my life that love me unconditionally.

I don't know how long I will be out of the hospital for, I don't know how I am going to pay my bills on a regular basis for the rest of my life,  but I do know each and every day I wake up  I giggle.

Since being out of the hospital, I have had to deal with a small fire on the outside of my house the day I got out of the hospital and three days later my entire roof and 90 percent of my siding was damaged in a bizarre hail storm here in SC. So in three days I had fire and hail and a few ants in my house. LOL no locusts Thank God.

I so wish I could convey to you what it feels like.. things don't matter... people matter, love matters, kindness makes the biggest difference in the world.. I swear, I can't count the number of random acts of kindness that gave me the fuel to keep going.

National Jewish Hospital is doing a story on me, actually one of the pictures submitted that they like was one of Jarka's Monty and I in a hospital bed.  I so hope they use it in the story. I will post the story once done, We are doing some editing to it still.

Every night I walk Jack we walk late at night 9 pm midnight and again around 2 am... Every time I walk I go by this mans house who leaves his shades up. It doesn't matter what time I go there, he is always on the computer playing solitaire......every time I walk by I pray for him.... I pray that he could know the joys of life in spite of some crappy circumstances I know he is under. 

To me, being grateful, filled with joy, peace in love is not based on what life has dealt you or your circumstance, It is choosing that in spite of those things, you will look and find to see the positive.

This was my Face Book status the other day

The Greatest pleasure in life is doing What People Say You Can Not Do

This is probably one of the most true statements about me. I am hoping to continue along those lines....while the doctors still feel the device in my heart is going to rear it's ugly head with infection.. I would like once again to prove that I can do all things through him who strengthens me.. Including beating sepsis, infected heart devices, CF, and every other medical issue that comes my way and STILL have an amazing life.

 

Thank you for being a part of my life and making it amazing, by myself I would be nothing, but because of the love of my friends and family, I am one of the most blessed persons ever. No matter what lot I have in life, I am blessed.

 

I AM SUPER EXCITED FOR THE CRUISE. I will be wearing Target bathing suits, target sun dresses and I am not even going to worry about trying to loose one ounce of my prednisone weight.... I am coming as I am, happy and grateful to be there..... I do have kick butt sunglasses though.

[Laurie, Fudge, and Vern]

Thanks for the update, Jen!! I pray you continue to have these great days and continue to feel better and stronger every day!! Keep thinking CRUISE!!!

[Maryann,Roo and Tigger]

Thank you for the update. I really try to live in the moment and you do.  I wish I were going on the cruise just so I could see your "kick butt" sunglasses.  Live, love, laugh -

As an aside, I have just joined facebook.  What is a page moderator?

[Janie, Jackson and Jilly]

Well said! May you continue to be well!!

[Karen, Jasper and Jackdoodle]

Very glad to hear that you are feeling so much better, Jennifer, and hoping things continue to go well for you!

[Bonne Bouche]

Beautiful post. It saddens me so much to see so much negativity and "my xx is worse than yours" all over the place. I wish people would be more grateful and appreciative... I'm so happy both you and JD are doing well

[Kaytlin and Cooper]

You are so right Jen! My Dad died from cancer when i was 19, he was 49. He and my Mom had all these retirement plans, that they never got to do together. My Mum decided to semi-retire and spends half of her time here in Canada with me, in Australia with my sister, or all over the world with her friend on hiking holidays. The other half of her time is in the UK working to pay for her trips! My parents have taught me to make the most of what we have, and to enjoy life!

Enjoy the cruise, im so jealous of all of you going!

[Phoebe's Mom]

What a beautiful post!

[Doris, Knox & Flash]

I AM SUPER EXCITED FOR THE CRUISE too!! I absolutely can't wait to be able to hug your neck! We are going to have such a great time!! Two months and counting...

[Joyce & Wilson]

  Well said Jennifer.. well said

[F, Calla & Luca]

I am very glad you are feeling well and living a more unfettered life. I do hope for a happy, healthy year for you!