Monday, October 27, 2008

First Day on FMLA

Today was my first day on FMLA and even though the fundraiser and the Young Boles volleyball and football games (thank you!) is going to cover my time off it felt just plain weird.

This weekend Aunt Sandy participated in the Silver Spurs event to raise money for cancer research. She came in 2nd place!

I keep thinking the next day is going to be easier, but that hasn't been the case. It's not a matter of feeling more loved or supported because I certainly feel that; it's that I can't get used to Jessa's current condition. It still pains me when we have to turn her. I still miss making decisions with her (and boy have I had to make a lot of decisions lately). Each word she tries to say and each flutter of her eyes is still precious. Today we could really tell that Jess was listening to what we were saying. She even said a few things to Aunt Pam.

Today I went to a funeral home to decide on some things that I didn't want to have to do today, but I'm really not going to want to do later. I asked my friend Kyle to go with me. Kyle lost his wife to cancer just before Jessa was diagnosed, and he has been a great friend ever since he called me up a few weeks after his wife passed so that he could help me through the same struggles he went through. I was very grateful to him and also to Amy Wade at Wade funeral home. Nobody wants to go to a funeral home but if they do they should have a person like Amy helping them and a person like Kyle to go with them.

One time when Jess and I took Katelyn to Burger King I was trying to encourage her to eat her food before she ran and played on the playground. I pretended her french fries were alive and as she ate them I pretended I was the fries by saying things like "Don't eat me. Not the teeth. My brother tastes better. Oh no. Etc." Katelyn laughed and laughed. She also got more excited. Finally, the excitement built up until she screamed at the top of her lungs at one of her french fries, "I'm going to eat your mother!" Tomorrow I will tell you what her dad in Portland shouldn't have said when I asked for Jessa's hand in marriage.

Two more days to Jadyn's 7th birthday.


Nita Cobb said...

I want so badly to be able to say something that would make you feel better, but I know that's not possible. My heart is breaking for you and your girls, and I continue to pray for ALL of you.

Karla Hagan said...

I was reading one of my favorite books last night and came upon a journal entry that spoke so beautifully of perhaps some of these days. Thank you, Jessica and Jake, for "helping me to see." Since getting to know you through the Care Bears class last year at Fielder Road with Brynn and Carson sharing this same class, I have watched your "outstretched hands and open eyes" from the first day I talked with you at my kitchen table. You had come over for a class play date. Anyways, I just wanted to share his words. The book is Road to Daybreak by Henri Nouwen. He writes: "Today I read [Sheila Cassidy's] short description of a hospice, and I was so touched by it that I would like to copy some of her words into this journal: 'Medically speaking, hospices exist to provide a service of pain and sympton control for those for whom active anti-cancer treatment is no longer appropriate - there is always something that can be done for the dying, even if it's only having the patience and the courage to sit wth them. Most lay people imagine that hospices are solemn, rather depressing places where voices are hushed and eyes downcast as patients and their families await the inevitable. Nothing could be further from the truth. Hospice care is about life and love and laughter, for it is founded upon two unshakable beliefs: that life is so precious that each minute should be lived to the full, and that death is quite simply a part of life, to be faced openly and greeted with the hand outstretched. One of the hallmarks of hospice life is celebration; cakes are baked and champagne uncorked at the first hint of a birthday or anniversary, and administrators, nurses, and volunteers clink glasses with patients and their families.' As I read this, I was struck that much, if not all, that Sheila Cassidy says can be said of L'Arche as well. . . . Both proclaim loudly the preciousness of life and encourage us to face reality with open eyes and outstretched hands. Both are places of celebration in which the certainty of the present is always much more important than the uncertainty of the future. Both are witnesses to the paradox that the most unlikely people are chosen by God to make us see."

Thank you again. Karla Hagan

Anonymous said...

Just a quick note about Mike and Amy Wade...Daniel and I went to high school with Mike and Amy...two of the nicest, most genuine people you will ever meet. Even back in high school, Mike said that all he wanted to be was a mortician...a little weird to hear from a 16 year old, but perfect for Mike because he truly cares for people. Even complete strangers soon feel like old friends soon after they meet him. Know that Mike and Amy will take very, very good care of you all.

Anonymous said...

Tomorrow will be a day of celebration for our family. Seven years ago, sweet Jadyn was born into our family. Jake, tell Jessa that we will celebrate her 2nd born daughter just as she would have asked us to....with laughter, excitement and unmeasurable love. Jesus blessed our family with precious, beautiful children who know the Lord because of their parents.

Aunt Sandy

Wendy M said...

I'm praying daily for you and your sweet family. I can't believe Jadyn will be 7! I had Jadyn in the baby room for Sunday School at LABC! I have emailed KLTY to wish her a Happy Birthday on the radio, hopefully it's not too late for them to get it! Be sure to have her listening at about 7:45 tomorrow!
Wendy Mizell

Anonymous said...

I responded to an earlier posting on this blog. I know of Jess through the YSC (Young Survivor's Coalition, a BC organization for young with with BC). I am a young BC survivor, a mom, the oldest of 3 girls and someone who lost her own mother to cancer (lymphoma) when I was 14. I know Hospice and everything it entails must be incredibly hard; however I believe it truly is the best thing for your family and for Jess.

When my mother passed away (over 20 years ago) Hospice wasn't as accepted or commonplace and I don't think was ever discussed by my parents. About a week before she died she was taken away in the middle of the night via ambulance as she had developed a high fever. I remember my sisters and I waking up with the noise and crying as we watched the ambulance take her away and that was the last time we saw her. She went into a coma and my dad and grandparents decided it would be too upsetting for us to see her like that so didn't bring us to visit her in the hospital. She ended up dying alone late one night after my dad left for the evening. We got a call early the next morning from a doctor saying "your wife passed away last night". (I was listening on the other extension). To this day, I regret not "saying goodbye" and feel sad that she had to die alone and not surrounded by the love of her family. So just wanted to let you know that I admire what you are doing for your family and for Jess and assure you it's the right thing in the long run, as hard as it must seem now.
Carolyn in NYC

Anonymous said...

I have had the prayer " Do not be anxious about anything, but by prayer and petition present your requests to God." I got this from one of Jessica's posts when she was finding herself having fears just recently. She said this was comforting to her.
So, I started praying for her this specific prayer. I will continue to pray this prayer.
Maybe read this to her. It might jog her memory of the calm she got from it.
I know at this time it is not good, but being a mommie she is probably scared to let go.
We love you so much and feel the great pain along with you. Call on us if you need ANYTHING!!!
Misty Kauffmann and the girls!

Anonymous said...

Precious Kaylor Family,

I have identified with Jessica's journey every step of the way, and feel very connected with her, as I share many of the same fears.

As you may know, I was diagnosed with a chronically degrading condition after Payton was born.

Please tell Jessica that I find strength in her story, and that I pray that the Lord will use in my journey as He has used her.

I can't help but hear the words in my head over and over from the hymn "Because He Lives"...

I hope that the lyrics will give you peace and assurance during this trying time as it does me.

Because He lives I can face tomorrow,
Because He lives all fear is gone;
Because I know He holds the future
And life is worth the living just because He lives.

And then one day I'll cross the river,
I'll fight life's final war with pain;
And then, as death gives way to victory,
I'll see the lights of glory - and I'll know He lives.

Because He lives I can face tomorrow,
Because He lives all fear is gone;
Because I know He holds the future
And life is worth the living just because He lives.

In Him,

Lisa Smith

Anonymous said...

song by Nichole Nordeman

I don't mind if you've got something nice to say about me
And I enjoy an accolade like the rest
You could take my picture and hang it in a gallery
Of all who's who and so-n-so's that used to be the best
At such'n'such ... it wouldn't matter much

I won't lie, it feels alright to see your name in lights
We all need an 'Atta boy' or 'Atta girl'
But in the end I'd like to hang my hat on more besides
The temporary trappings of this world

I want to leave a legacy
How will they remember me?
Did I choose to love? Did I point to You enough
To make a mark on things?
I want to leave an offering
A child of mercy and grace who
blessed your name unapologetically
And leave that kind of legacy

I don't have to look too far or too long awhile
To make a lengthly list of all that I enjoy
It's an accumulating trinket and a treasure pile
Where moth and rust, thieves and such will soon enough destroy

Not well traveled, not well read, not well-to-do or well bred
Just want to hear instead, "Well Done" good and faithful one...

Anonymous said...

Mr. Kaylor.
It's Amanda Dillon I just wanted to tell you we miss you!
i mean..I was dozing off in class today and on the back of about 8 chairs said i love Mr. Kaylor!
i just wanted to let you knoww..alot of people love and care for you!
Take your time being out..we love you and miss you.
Hope to see you soon...
Amanda Leigh Dillon

Faye McCoy said...

I am Joanna McCoy's mom. I just wanted to send a quick note to let you know that Jessica will always be a special person in Joanna's eyes! Love and strength to your immediate and extended families.

Faye McCoy

Anonymous said...

I am thankful that the Lord has brought Kyle into your path. He is an answer to prayer. I will continue to pray for you and Jess and the girls. I am so thankful for you all. I hope Jayden's birthday is full of smiles. Love you all and praying for you.

Anonymous said...

Taylor and Bailey are sitting on my bed doing their homework as I read aloud about Jessica's Journey. Jake, the girls still remember calling you Mr. Monster (they never viewed Jake as a monster he would just make funny "monster" sounds at them. Jessica the girls still remember you picking them up from school when I would get called in to sub.
The girls love hearing about y'alls love story:) They are sad about Jessica's condition, but are happy about the prayers and support that surround your family.
We are praying for all of you. Jake and Jessica y'all are touching so many lives, and drawing people closer to God every day! We love y'all! Peace In Christ, the gillum girls

Alex Gunn said...

I have never met a more courageous and caring person in my life. Jess you have had the most amazing impact on so many people. I will always remember you picking Garett and me up from Boles in your little red car and the fun we had at the writing clinic you and Jake put on at the church off of Cooper Street. You cared about us so much and I only hope you know how great an impact you’ve made in my life. You’re amazing!