Thursday, March 5, 2009

Preparing ourselves for the worst...

The past few days Cody has slept more and more. We seem to have a much better handle on his pain which is probably why. He has been communicating less and less. I took a couple of pictures of him and I just don't have the stomach to post them. I don't want to remember him like this.

Dr. Abu-Gosh came out to our house to visit Cody today. We talked with her for a while and she evaluated him. His fingers and toes are now looking blue which means that his lungs are starting to be less productive. His breathing is becoming more and more labored. She believes that it could be only a matter of a couple days. We also met with the Dr. from Hospice. We decided to sign up today. It is time.

The fact that we are at home makes some things easier but it makes it a little hard on the other kids. When they are not at school they can't get away from it. School is definitely good for them right now. Cody has tasked me with building all of his lego sets. He use to help but now that doesn't happen very often. At least that gives a mindless task to take my mind of the negative stuff. Diane doesn't seem to have that advantage.

86 comments:

Carol G said...

I'm so sorry. I'm praying for strength for all of you.

Rose said...

I can't even imagine the unbearable pain that you must be going through. I am absolutely praying for you five, and everyone else dealing with this pain.

karen said...

My heart goes out to you all. You are in my prayers. I wish you all peace.
Karen

Anonymous said...

Thinking of you all...please know that we wish for strength and for Cody's pain to be lessened..

I am glad your doctor came out to your house to see Cody...she sounds so wonderful.

feet

Anonymous said...

I don't know you, but I think of you and your family everyday.

Life is just not fair. I wish there was something I or someone could do to help.

Cody has touched my life, and as a parent myself, I cry with you when I hear your pain and imagine the unbearable heartache you are enduring.

sending you and yours warm thoughts from CT

Susarah said...

PRAYING FOR YOUR FAMILY IN THIS MOST TRYING OF TIMES!!!!

Monica Cassier said...

Praying for cody and you all for courage and strength...my run today was full of thoughts of cody and prayers...

The Gotch 5 said...

I am praying for you and your family during this unbearable time in your life. I can only imagine how hard this is on your hearts. May God somehow bring a sense of peace in your hearts for what you are about to endure. Prayers from Illinois

thegrowingcunninghams said...

Through ACCA & Dan Clark, we learned of your family a while back and have faithfuly followed your story. While our hearts break for you, we think of you often and pray for you frequently. Pain such as this makes no sense and seems so unfair, but know that Cody has touched so many lives and inspired so many people.

Jacqueline said...

Praying everyday for you all.

jeriberinanabana said...

Praying every day.

mommaof4wife2r said...

praying...praying.

Anonymous said...

No words to convey my thoughts. I pray.

C.C. and Double T said...

My heart is breaking for you and your family right now. I pray that you will sense God's presence especially close to you during this time. I will be praying for you.

tracy said...

Just stopping by to let you know that I'm thinking of you guys and especially of Cody. I'm glad to hear that his pain is more controlled and that he seems to be resting comfortably. Although we've been down this road, I don't have any words of wisdom that can make you feel better. Please just know that we're thinking of you. www.caringbridge.org/visit/marissamonroe

Kelli said...

Oh God bless you. I can't imagine. Please know that many are praying. I'm posting prayer requests all over my networking sites.

Frippery said...

Sending prayers for strength and peace. Pam

Sparkette said...

Praying for your family.

Anonymous said...

All I can say is hang in there. We are all heartbroken and praying for strenth & peace for you all. You & Cody have touched hundreds of people around the world with your story. Give Cody a kiss for all of us.

Jim-ACCA/TRANE

Anonymous said...

Praying for your family to have comfort,peace and strength. There can be nothing worse than losing your child. My heart cries for all of you.

Anonymous said...

God be with all of the Johnson Family!!! May peace and comfort follow all of your days.

The Lord has his arms open for your precious child. I pray there be comfort in knowing he will still be loved and taken care.

Saylorsmom said...

You are living something no parent should have to go through. My heart breaks for you and your family. I pray for peace for you all.

Anonymous said...

No words... I still pray.

Becky said...

Our family is praying for you. May God comfort you and hold you close to Him.

Gettin Older said...

Prayers for grace and strength. I can't imagine what you are going through.

Nancy said...

Praying for you and your dear Cody.
Nancy

Jennifer said...

I am so sorry! Praying for you all!

Jennifer

MangoAK said...

For Cody and for his family- many, many continued prayers for courage, strength, comfort, and peace.

Anonymous said...

I will light a candle for Cody, if all the readers do the same there will be a flicker of light around the world 24/7 for strength and peace!

Love to you all at this most difficult time.

Shirley M-J

Dawn said...

Praying.......

Cathy Meister Melton said...

So sorry that you are going through this horrible time. I am praying for you and your family.

Anonymous said...

Praying for your family every hour of every day.

Sophie's mommy said...

I do not know your family, but I think of you all often, I shed tears for you all. I think of Cody and check your blog often through out the day. I wish, I could say or do something to help or ease your pain. Please, let me know if we can do anything to help. We will try our best. Love to your family from KY...

Deb said...

I don't have words to type for you- but I am praying.

Love and hugs,
Deb

mbo said...

Just heartbreaking. I hope it's some consolation to know that there are so many of us out here in blogland thinking and praying for you and your family.

Anonymous said...

I don't you guys, and just found your blog, but I just wanted to day I'm sorry that you guys have to go through this.

Marlo said...

I know you don't think you want pictures, but take them anyway. Someone else gave us that advice and I'm glad they did. Our pictures of Anna's last day are locked away in the safe deposit box. I don't look at them, but I'm glad I have them.

Rhonda said...

I am so sorry!!I will pray for you all.I will continue to pray for you all.

Vonda and John said...

I just can't imagine your pain. I am crying for your family and praying to. I pray for no pain.

Vonda

TiredMamaRunning said...

Love and prayers for all of you.

Anonymous said...

We are sending our love and support over the miles. Thinking and praying for you...we are here.
Kelsey, Shawn and the kids

Becky said...

My heart breaks for you. I can not
imagine how hard this is for all of you. You are constantly in my
thoughts and prayers. Strength and
love. God bless.

Glorybelle said...

All of you are constantly on my mind, in my heart and in my prayers.

Anonymous said...

Even though Cody isn't responding that much anymore, please know that his heart is hearing all you say and all the love you are giving him. Continue to wrap him in your love while here and if God chooses to bring Cody into His loving arms you will know that Cody's Heavenly Father will love him with the greatest of all love.

My heart and prayers are for all of you.

Ann Stegall
Wake Forest, NC

Anonymous said...

Deck Ape, thank for you this blog and for your honesty. I've been following it for some time and it is always a privilege. I hope that when Cody goes he goes painlessly and peacefully knowing what a great dad and family he has. You have my deepest admiration. Take care, Ed in California.

Anonymous said...

Goodnight Cody - sleep peacefully! I will talk with you in the morning!!

Hugs to Cody, Pat (ACCA-NCC)

Cameron said...

My heart hurts and the tears fall for all of you. I pray day in and day out for all of your family and precious Cody. I pray for peace and stength for all of you in the days ahead. God Bless all of you!

Mary

Beth said...

Praying for your family. There are no words.

Michelle Riggs said...

Thinking about you and praying often. I am so sorry.

Donna said...

praying for you all here in Jacksonville, FL.

Julie (Boes) Knisely said...

You are all in our thoughts and prayers. May God give you strength and gently hold Cody in the palm of his hand.

christy said...

Ive found your blog through Silly LIllies blog. I am so incredibly sorry and touched by the story of your familys love and the pain you are experiencing.
Cody sounds like an amazing kid as does your whole family. You are in my thoughts.
Peace be with you all
christy

The Leighton Family! said...

I pray for God to give you the peace to enjoy him. I think about you all day and tell everyone to pray. May God Bless Your Little Hearts!

Anonymous said...

I am in tears. I have been praying for you and for little Cody. May Jesus hold his hand these last few days. God bless you all.

Tressa

BIG MO said...

I wish I could tell CODY one more
time that I LOVE HIM. This just
isn't fair. GOD BLESS OUR BIG GUY.
LATER, MOM

Anonymous said...

Mickey, I hate to hear this. Still praying for Cody and the whole family. Thanks for keeping us informed. Prayers continue for you all.

Teresa (tcoplen)

Anonymous said...

As a parent of 4 my heart goes out to you and your wife. I cannot imagine what you must be going through and pray for your strength and peace during this time. My heart cannot express my hurt for you at this time... Prayers...

elizabethnyc said...

Praying for all of you, Mickey.
ElizabethNYC

Anonymous said...

Someone mentioned lighting a candle and reminded me of something...

http://www.gratefulness.org/candles/enter.cfm?l=eng

I hope you don't mind, I lit one and used MDJDC (=Mickey, Diane, Justin, Daniela, Cody) for the group name.

I hope others will light candles, as well.

The Bretl Girls - Germany said...

There are no words that can ease your pain. I can't even imagine what you and your family are going through. All I can offer are my prayers for Cody and your family. I am so sorry that you all have to go through this.

Jutta, Solingen, Germany
former Coconut Creek, FL resident

Anonymous said...

Gentle thoughts, love and prayers.

Max's Nana

Just an ordinary woman said...

I think of Cody.. and your family many times during the day...I check your blog at least 5 times a day to see how Cody is doing.. I send up prayers all through the day for all of you..

I pray for strength for both of you, and for peace for all of your children.

May The Lord hold you in his hands during the very difficult time

Kerren
South Africa

christianswithcancer said...

I hope you can feel me hugging you, Mickey!!! If I were in Manassas, I would be right there! Please know that I am loving you both from a distance, praying for you and sending my sincerest prayers your way!!!

Samantha said...

my heart is crushed for you and your family. Please know that your Cody is loved and will be prayed for constantly

209Mike said...

Praying for you guys all the time. God bless you all. Keep the faith.

Anonymous said...

Our hearts go out to you. We are praying for your precious family.
~The Bruce Family~

MangoAK said...

I also lit a candle for Cody.

"anonymous" posted this website-

http://www.gratefulness.org/candles/enter.cfm?l=eng "I hope you don't mind, I lit one and used MDJDC (=Mickey, Diane, Justin, Daniela, Cody) for the group name."

It is something small- but it is another way to take a moment to send love and prayers to Cody, Mickey, Diane, Justin, and Daniela.

Dottie O said...

Prayers continuing for Cody's comfort and some peace for all of you.

Dottie

Anonymous said...

We are praying for you all.

For Tuesday Fund said...

I can't imagine your pain right now. I am praying that you have strength and comfort over the next part of your journey. I am so sorry.

runnergeel said...

May God be with you all on this day
Karen

Anonymous said...

I always pause at the photo of Cody on the beach. He's marching to his own music. May you all find strength and peace.

Wolfman

Babs said...

I'm praying for strength now for every moment.

Lisa said...

My class has been praying for you and your family. This touches the hearts of many here, who have experienced similar sickness.

Anonymous said...

Mickey, I think of you all daily. I keep thinking this isn't fair to Cody and you all, nor all the other families having to fight this beast. I wish time could have been stopped for Cody and for many others. For him to have waited for when this beast has a cure. Unfortunately, that just isn't the case.

Prayers of strength and peace for you all.

Susan and Jonathan

Anonymous said...

No words...just tears!
Prayers of Peace and Strength.
God Bless,
Bruce

Anonymous said...

Mickey I wish I could find the words to somehow ease the pain that you all must be feeling. Enjoy every moment with Cody, continue to comfort Diane and the kids and don't hesitate to lean on those around you who care so much, we are her if you need us.

Dan

Anonymous said...

Mickey and family,
I honestly don't know what to say. Everytime I start to write something it just doesn't seem to be what I want to convey.
I'll simply say continue to be the loving parents and brother and sister to Cody. May God watch over and bless each of you.
DollarBill

Anonymous said...

"He tends His flock like a shepherd. He gathers the lambs in His arms and carries them close to His heart." Isaiah 40:11 May God bless you all with comfort, wisdom & strength.

Anonymous said...

My heart just breaks for you & the family. The Lord will give you the strength to survive. Cody will always be in our prayers.
LTS--Faison NC

Anonymous said...

Dear Mickey, my thoughts are with the five of you every day, wishing and praying as hard as I can for your strength, and Diane's, to support your family and each other.
Tamara

Anonymous said...

Dear Lord- I lift this family up to you right now, You know you what this family is going through and we know you are in the mist of preparing the greatest party for little Cody and that when it is your will you will take little Cody to be with you and he will no longer be sick but he will fun free on the beach's of Heaven. But we ask that you also wrap your hands around those you are left here on earth and who's hearts are hearting you ask that you comfort them and may you bring peace to his brother's and sisters we ask this is your name.
BLessings to you
Megan

Anonymous said...

My heart is hurt hearing about your sweet Cody. I'll be praying for comfort for your family.

Anonymous said...

Rest in peace Cody. I pray for strength for your family at this difficult time.

Carolyn said...

I just recently came across your blog and wanted to tell you how very sorry I am for your loss. I can't imagine the pain you and your family are going through. I am praying for your family to have peace and strength.

Kelly said...

My dad passed away a year ago this past February from cancer. It was incredibly difficult, but the one thing that me is going through the old pictures- even when we prepared for the funeral. Now I am shocked by the pictures of him sick, and only remember him as active and vibrant. I don't pretend that it gets easier - it hurts everyday, but sometimes I can go a little while through the day without thinking specifically of the pain. I hope that all of you find peace and happiness in the time that you knew him, and know that I am praying for you.