Friday, October 23, 2009

Pinch Me...

There have been so many times over the past year that I feel like I'm living a nightmare and I just want someone to pinch me and I'll wake up.  I guess in a way -- looking at our life as just a dream and not really our reality, is just another way we cope.  Today was another day where now, at the end of the day, I look back over the last 12 hours and wonder if it was all just a bad dream or is this really all true.


Sadly it is all the cold hard truth.


This evening Gavin was admitted to duPont.  He has been in bad shape over the past few days and this morning we felt like he was to unstable to be at home.  After an emotional conversation with Gavin's doctor it was decided that Adam and I needed to site down with Dr. R and talk about things.


Tonight we finalized Gavin's DNR.  Tonight we all talked about Gavin's death.  Tonight for the first time I heard the words, "when Gavin dies."  


No mother should ever have to hear those words spoken about her child.  It's sucks and it just seems unfair.  


We are switching a lot of Gavin's care around.  He will be made comfortable at all cost even if it causes more harm and speeds up the process.  He will be given narcotics to help ease his discomfort along side a few other meds to help his agitated state. We will be keeping Gavin on heavy duty antibiotics and antifungals to keep him infection free as long as possible before the superbug grows and we are done.  


There are so many other things are we are needing to make decisions on.  Please pray that Adam and I have clarity of mind to do this.  We want to make Gavin happy and comfortable -- and sadly that most likely means a shortened life.


I'm not sure if I should be posting this or not.  On one hand Adam and  I live this life everyday and all this talk is just another chapter in our story.  For some of you this is hard to read and may even be shocking -- and for that I'm sorry.

94 comments:

Alison said...

I know the numb, surreal feeling of conversations like those. You know they happened but they just don't seem real. Prayers are with you. Prayers for peace and comfort for all.

Alison

grey like snuffie said...

I've walked this path with a friend...it does indeed suck and I will continue to pray...God is God and I am not.

Ellen said...

I am sooo sorry to hear this! I will be praying for Gavin and your family!

Heather said...

Sending you all the love,strength,courage and clarity for the road ahead.Praying for Gavin and that tiny but oh so mighty,body of his.Much love from your California friends.

Anonymous said...

I'm so sorry. I'm just so very sorry.
Praying for you.
Tracie

Jessica said...

Standing with you in the grief and pain. Even though we don't know each other and may never meet face to face...I am praying.

Oh God meet us here.
Draw their hearts close as they make such unbearable decisions. Give them your strength.

You may not feel it...but you are brave. So Brave.
God Bless.

Anonymous said...

My heart hurts for you. We had to sign a DNR for our 8 month old son (cancer). It is so wrong to have to make decisions like this for our children. I couldn't do it, made my husband sign. Next to my sons health, my biggest fear was how it would affect my other children - 4, 10 and 12 years old. It was rough for a while, but God has used it for good. They are amazing people - now 14,20,and 22 - full of compassion and insight. Our prayers are with you all.
Stacey
staceys@kcweb.net

Me and My Boys said...

Oh Karen. We will be praying for wisdom for you and Adam and the doctors. I know how hard it is to plan how things will end. It isn't fair at all, but you have fought so hard for Gavin and I know you won't stop fighting until the end! Jessica

kate. said...

Oh, Karen. And Adam. And Maddie. And precious Gavin. I am so sorry - devastated. I'm glad you posted this even though I'm sure it was just impossible to type. You need support...and prayers...and friendship. It's the least any of us can do for all you've done for us. You have showed so many of us how to be strong...how to live no matter what...how to be an amazing Mommy and Daddy...how to have a great attitude...how to create normalcy when there's nothing normal about your life...how to be inspiring. You have inspired.
All of this is so unfair. You're right - no parent should EVER have to face this. But know - please know - that you have given Gavin a wonderful little life. You gave him every opportunity that a little boy should get - and you gave him FUN. And what you gave Maddie is even better. You gave her incredible memories that she will have forever of her little brother. I am crushed with this news. Please contact me if I can do anything to help you in any way. I have help at home so whatever you need - errands or favors or ANYTHING - please contact me.
xoxoxo
kate.

Jamie Fenley said...

Your family is on my heart and I pray for Gavin (and the whole family) when I think of him. I am so sorry, and cannot imagine how you must feel. God is with you.

Courtney said...

yes i'm shocked.
i'm mad.
and hate it.
but am thankful to know how to pray for you and adam and maddie and gavin.
you all are precious.
you are the PERFECT mom for Gavin.
just perfect.
maddie is the perfect sister.
adam is the perfect father.
God makes no mistakes.
and i have to trust that.

praying for you, owen's family!

Anonymous said...

i love you guys so much and it hurts me to think about the converstations you had and the decisions you had to make.
YOU GUYS ARE GREAT PARENTS! Really!
I admire how much you love your children and lay down your lives for both of them everyday.
WITH DEEP LOVE AND FRIENDSHIP....
Dawn

jocalyn said...

I have been holding in tears and heartbreak all week with our situation...and after reading this post was finally able to have a much needed, good cry.

You are an amazing woman and mother. Your family is truly inspiring.

Thank you for sharing your journey.

I will continue to pray for your entire family.

Misty said...

Karen, my heart is breaking for you. i wish i had the words... my prayers are with you all.

misty

Anonymous said...

I am praying for comfort, peace, and courage for all of you.

mandie said...

i am praying hard for your family and sweet boy.
may God give you an *abundance* of peace.

Amber said...

Oh Karen...I am so sorry. You are right, no one should have to hear those words uttered. My heart breaks for your family right now. You all are definitely in our prayers.

Anonymous said...

Your family is in my thoughts and prayers. You are doing what is best for Gavin to make him comfortable and pain free. No parent should have to make these choices but we do. Know that you are doing what is best because you love your son so much.

Lisa Marie said...

I think you are both being so brave and have always had Gavin's best interests in mind, even now, when it is the most difficult. --Michael

We love you all so much and are praying for peace and comfort for Gavin and for all of you.
- Lisa

Anonymous said...

God makes no mistakes. Everyone has a purpose for their life, my whole heart tears love and hope if for that little boy. I pray that God brings peace to your family. You are a strong women of God, you taught us how to be strong when times are hard. You taught us that there is always a tomorrow that God has created for us. I'm praying with everything I have for you and your family.

Anonymous said...

Never apologize. We are HONORED that you would share your story and give us the opportunity to PRAY for you and your beautiful family.

Tiffany Lockette said...

My heart is breaking for you and the decisions that lie ahead. I am so very sorry that you and your family have to go through this. Gavin is so cute. He has the most beautiful blue eyes. I have been following his story for a while now. I am deeply saddened that his health has deteriorated as much as it has. I am so sorry. I will continue to pray for comfort and healing.

Stephanie said...

You don't know me, but I have read for a while. I think the Lord told me this would be coming for you. I will keep praying.

-Stephanie

Kate said...

I am so sorry. I have had surreal conversations like that, but signing a DNR is a jolt of reality that no parent should ever have to face.

I am following another blog about a little 3 year old boy with mito. Like Gavin, he is not doing very well (Noah Estes is his name). My heart is breaking for both your family & the Estes family and I will continue praying for you all.

Anonymous said...

God gave you a fragile boy and you are doing, and have always done, everything to make him comfortable, happy and have as normal life as possible. You are still doing everything right for him. I am praying for your family to remain strong and find peace and comfort.
Debbie S. CT

carrie-anne said...

my eyes are full. my heart is full and breaking. my mouth is overflowing with prayers for your entire family. may God be with you thru this sucky time.as we do everday, prayers are being said for Gavin, Madi, Adam and Karen-the Owens family. You are a truly amazingly wonderful example of love. Peace to you. <3

Anonymous said...

Prayers for Gavin and your family. Words cannot express how sorry I am that you have to go through this. Please know that you have the support of complete strangers.

Susan Danzi
A friend of Jeff and Erin who's been there every step of the way since meeting Avery in 2007.

Reesha said...

Sending lots of hugs your way and lots of clarity to make the decisions you need to make. So sorry you had to make such a hard one!

Tina said...

My heart is breaking for you right now. I can't imagine what you are going through and as a parent I hope and pray I never do. Like previous comments, I also wanted to say although we have never met you guys are always on my mind and I am praying for strength for you all for the days ahead.

Much love from Saskatchewan

Iya said...

My heart is breaking for you all... we stopped at the house tonight, to look at where Madi and I could paint a mural, and was filled with so much hope. While today sucks, and it probably doesn't help to hear... your Father's plans for you include hope and good future, and in the meantime, please know that many, many friends are mourning & praying with you.

Much love & hope,
Gregg & Iya

Paige said...

My heart is breaking for you and your family. You and your husband are such wonderful parents and your right no parent should ever have to hear those words. I pray that the Lord gives you strength through these days, comfort and happiness for Gavin!

Paige & Charli Beth

Anonymous said...

I feel so sorry and sad for you...I just don't know what to say...I'll keep praying for your beautiful family!You are all loved and special!

Anonymous said...

I feel so sorry and sad for you...I just don't know what to say...I'll keep praying for your beautiful family!You are all loved and special!

Renata Marculo

Aimee said...

I am so sorry your family is going through this! I can't imagine what it feels like to have to make those decisions. I am sure that you and your husband have Gavin's best interests in mind and hopefully that will bring you some comfort. I know there is really no comfort in your situation but know that there are so many people out there thinking of you and your family each day. I don't know you, but found out about you through Erin's dream. I will pray for peace....for Gavin, you, your husband and your beautiful daughter!

heather spratt said...

I have been and will continue to storm the gates of heaven on Gavin & your family's behalf!

Anonymous said...

oh, Karen and Adam, I am so sorry! I Hate those letters DNR! Life, death, of a loved one is oh sooo hard!! I am praying for all that concerns you. I pray that the Lord will grant you His peace and comfort at this difficult time.
~Debbie Heisey

The Q family said...

I don't think I have ever commented before, but I read every post and pray for Gavin and your family many times a day. I thought tonight it was important for me to reach out. I am so sorry that you are facing these decisions. You are right, no mother should have to face those words and decisions. This really sucks and I hate it. I want you to know that I am praying for you guys as you face this uncertain future. I am praying that you will cling to God in this instead of blaming Him. I am certain that He hates this too. I pray peace and comfort as you begin what could be Gavin's walk into perfection.

Anonymous said...

We have never met but I have been following Gavin's story. I normally have a lot to say about things, but I can't find the right words now. My heart is so heavy and I, like many others, cannot hold back the tears. I pray that you and Adam may have clarity when making such hard decisions. I pray for Maddy because she is a truly amazing and remarkable young lady. Thank you for posting your words today. I am honored that you shared the events of the day with us. I hope that it helps to know that so many of us carry Gavin and his family in our hearts.

Anonymous said...

"When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul."

May the Lord grant you the peace, strength and courage to do the things required of you and your family in this difficult time. I don't even know him, but I love your little Gavin and my heart breaks for him.

Lorra said...

I'm sorry to hear this. Praying for Gavin and your entire family.

KK said...

My heart is broken for you, I'll be praying.

Jody said...

I have read for a long while now, yet never have posted. But I want you to know that this random stranger, and her four little children, have been praying for you and your family. We hope that you know how much your family has touched ours. Your strength through this impossible journey has inspired and helped our own family through some very difficult times and situations. We love you, even though we don't "know" you, and we will continue to pray for your family. We will ask Him to bless you with the strength and knowledge you will need to face the difficult times ahead. And, of course, we will ask Him for more than that for you. Remember to cling to your faith and your family, and even tho the tempest is raging and you can't see the sun, you will weather the storm.

Anita J. said...

Oh, Karen I am so sorry. Praying for all of you. I pray the God of all comfort will be with you.

Heidi said...

How can I find the right words... My heart is aching so for your family tonight, this was tough to read. Karen there isnt a day that goes by that I dont think of your precious boy. NO parent should ever have to have that conversation...ever. Im so sorry.

Youre both such amazing parents to your children. Visiting your blog and reading all your words of encouragement over these months has really helped me gain my own strength in dealing with this cruel disease. Our kids shouldnt have to suffer so.

Know that I think of you often, and continue to pray for peace and comfort for your family, may God give you the strength in the coming days ahead. and Please give that sweet little girl a hug for me as well, she's such an awesome big sis to her brother.

Heidi and Jack 6, mito

Anonymous said...

may you have peace that passes all understanding.

Suzy said...

So sorry - to say that sucks is a bit of an understatement :(

Cindy Heintz said...

Karen and Adam....We know what you are facing and your wonderful people who will ALWAYS do right for your beautiful son.
Hope is a journey, not a destination. It's value lies in the exploration. Hope is the way we live our life and the journey of hope should last until the end.....
Your ALL in our heart, thoughts and PRAYERS Always.
Much Love to All
Larry & Cindy

unzen said...

I found your Blog about a year ago. I loved seeing his big blue eyes. I want to thank you for sharing. You have a very nice family and no mother-father should have to make this hard choices for their children. You have done every thing to make sure your son lives now you will help him be comfortable as he becomes your angel. Very hard-Very hard. I am sorry you have to do this. Please know we are praying for you all and hope you still have many good months ahead with your son. God please gives this family peace and comfort as they make hard choices for their son to meet you.

Anonymous said...

I don't know what to say. I have no advise or words of wisdom. I just pray that God will give you supernatural peace and comfort to make it through this. I know He is walking with you and even carrying you.

Jodi R said...

Karen, again, We are speechless:( We will pray for your strength and for Gavin's life! YTou are always in our thoughts, ((((HUGS)))))

Anonymous said...

One set of Footprints in the sand..."My child, when there was one set of footprints, it was then that I carried you" said the Lord. Karen, Adam, Maddy and Gavin, praying that the Lord carries you through this very difficult time.

Love, prayer and God's Amazing Grace to your family
Joy

Heather Nicole said...

Karen, I love you guys so much, you are doing what is best for Gavin.

Love, Heather

Anonymous said...

Adam and Karen and Madison: Our hearts are breaking for you. We have observed you being the most incredible parents to Gavin. His life may be short but you have made so many memories with him for you all to cherish. It just doesn't seem fair this is happening but I know your faith is strong and for whatever reason you have to go through this, God will carry you through. We will continue to hold you up and trust our Father to surround you with His Presence, embrace you with His Comfort and fill you with His Peace.

Bronx Cataldo's said...

Before my son was born the Doctors asked me well told me it would be better if I signed a DNR for him. I couldn't but had made a decision if he breathes help him if not let him go. I was so happy when he came out screaming I didn't have to make any decisions. Still in the back of our minds almost 5 years later we still get asked did you sign a DNR?
Keeping you all in our thought and prayers

Sandra DiCesare said...

Owens Family,

As a Mother my heart is breaking for you. I have only met all of you a couple times, I feel as though over the last few yrs I have really come to know and love you all.

Lots of prayers for for all of you and lots of prayers for peace and comfort for Gavin

Reagan Leigh said...

So sad. So hard. Please don't EVER feel like you have to apologize for being honest about what you go through. People that read this blog have grown to love Gavin as their own and they should know the truth so they can ramp up their prayers for Gavin and your entire family. So tough. So not fair.

Christopher Hopper said...

Born into war. Called to affect culture. Destined for glory.

Love from the Hopper tribe in upstate NY. Praying "be healed" until I have nothing left to pray for.

You are wonderful people.

ch:

Michelle said...

Praying for your sweet boy, and your family during this difficult time.

Kristina said...

I am so sorry for you. I found your blog from Kate and have followed a bit of your story.

I have been thinking of Gavin and praying for the family. I will continue to pray that everyone finds strength.

We visit DuPont hospital a couple times a week. If you need anything at all, please ask. My emails is: kswhite2@gmail.com

Anonymous said...

Praying for you ALL for strength, wisdom, peace, comfort, rest. Karen and Adam you are doing SUCH a wonderful job as parents! NEVER forget it! We love you, and are lifting Gavin and all of you to the Lord in prayer.

Steve said...

i am praying for you during this tough time from Woodstock GA. I pray that God will help you through all of this. I pray that God would heal Gavin if that is His purpose

Anonymous said...

I have been down this road, but was fortunate to have had my son for 27 years battling another disease. You learn to cope with what the Lord gives you knowing there is a broader picture at the end. If you ever get the chance to read "90 Minutes in Heaven", your journey will seem less painful. I am sorry to ever hear of a child who has to deal with the ravishes that a disease can do to a body. For those that were born with the illness, it is their only known way of life. We as parents only want what is best for our children and will do what we need to reach this goal. Relish the time you have, the joys of a smile, a hand holding your finger. As we know with any death, those left behind are the ones that deal with the pain of the loss. Be thankful you have these days to be with Gavin. You have been given a gift to say good bye--never having the knowledge that I never said the things I wanted to, said "I love you" or give that final hug.

Shannon H said...

May God give you a peace that passes all understanding. Praying for you and your family.

Beth said...

No apologies needed Karen, this is the nigfhtmare that you are living and feeling, and unfortunately, you are not alons in this process.
You are the most wonderful parents to your children, always considering their best interests and that ramifications of your decisions and how the kids will be impacted by them.
You are all held so tightly in Jesus's arms, I pray you feel his strength and compassion during this difficult time. You are facing a scary time and I pray that you feel His strength and peace throughout this process as well as healing and comfort for Gavin.
I have followed you for a long time and commented a couple of times, but always checking in and praying for you all.
love and hugs to you~
beth in colorado

Jennifer said...

I have no words. I only hope that you can feel the love and comfort we all hope to convey in our posts.
Praying for all of your family as times become even harder.

Shari said...

Oh Karen! I have no words other than I will pray for your family during this transition. I love you guys!

tripntwinmom said...

I walk this road with my son at many times and still do (he is 13)and my heart goes out to you as those words are IMPOSSIBLE and I agree that no mother should ever have to hear them in the same context as the words "my son." I pray that God gives both of you the wisdom that you need to make the decisions that are best for Gavin and your family as only you know that.

Thinking and praying for you.

((((HUGS))))

Jenn

Cindy said...

Do not ever apologize for expressing yourself on YOUR blog. My heart is breaking for you. Tears are running down my face. My prayers are with you for strength and healing. Words are never enough.

Kris said...

I don't have any words - and won't try. Please know that a small group of people 1000s of miles away are touched by your love and resilience, you precious little boy - and we are praying. and shedding tears. God be with you all!

Nicole, Drew, Jack, Megan, Sophie, and Lucy too said...

We are praying for you! I don't know what to say...I am so sorry!

Anonymous said...

Gavin is a beautiful little boy. Thank you for sharing your story with all of us. My love and prayers are for all of you.

RB

Jake said...

we love you and your family and are praying for you guys. our hearts go out to you

Erin, Jeff & Calvin said...

Always here, always hoping for comfort & peace for your whole family. With lots of love pouring from us to you,
Erin, Jeff, Calvin & 2 amazing angels, Avery & Nolan

Wendy said...

I am so sorry! My family will be praying for your family.

Kristie said...

Adam and Karen,

All I can say is I am sorry. I will pray for peace and GOD's love to surround each of you.

Lots of Love.

Holly said...

Karen & Adam,

I read this post last night before bed. I cried in my husbands arms telling him that it wasn't fair.

I've been reading Gavin's blog since I was pregnant with Caleigh. I feel a deep connection with your family even if we may never meet.

Praying for comfort, calm and peace with your decisions. You are both wonderful parents and Gavin is such a fighter because of your love.

Blessings to your family

Stephanie said...

What agonizing words to hear. We continue to shower your family with prayer. May God's presence rain down on you.

Kate said...

Know that we are all carrying a portion of your pain.
I am so, so sorry. This is so unfair. My heart is breaking for you all.
I am praying for all of you.

The Hopkins Fam said...

I so wish I could lie and say I know what you're going through and it'll all be ok, but I can't. All I can promise you is that I, along with so many others will be prying vigilantly for you and Gavin indefinitely!!!

Anonymous said...

My heart is aching for you! The pain you feel is unimaginable! I wish there was something that could change everything! I will continue to pray for Gavin and your family! I pray to God that Gavin's pain will fade! I pray that all of you can live in Peace! May the Lord watch over you every step of the way! I'm sorry!

Yarnall Family said...

We love you and will continue to pray for all of you. May God give you peace and comfort at this time.

Jocelyn said...

My mom goes to your church and I grew up going to MSF. I am a mother of a child I adopted with physical disabilities and though I don't know what it is to have a child who is chronically ill I do know the struggle you have faced having a child in the hospital. I know the decisions you are being forced to make and I want you to know that my every thought, my every heart beat is with you, Gavin, Adam, and your beautiful daughter.

My son prays for Gavin every night. But what touches my heart is that he prays for you more. He asks God to make your hearts happy not sad when Gavin goes to be with his maker... because my son knows that when a beautiful child like Gavin leaves this earth it is because God could not stand another moment without Gavin in his presence, so he bring him home.

Please know that we are standing with you, though we have never met.

With all our love,

Jocelyn & Isaac Tarquini

BrunetteKoala said...

You have nothing to apologise for Karen.

Praying for peace, for wisdom, for clarity.

I haven't commented for a while, but I have been continuing to receive Gavin's blog feed and following @adamandkaren on twitter.

Continuing to pray...I can only try to imagine what it is like, I can't pretend that I know because I don't, but I know so many of us are praying and wanting to walk beside all of you in this journey, no matter what happens.

with much love,

Laura Anne

PsychMamma said...

Thinking of you all and keeping you in my thoughts and prayers.

Wishing your entire family peace.

Aunt Becky said...

Sending prayers, love, light and peace. I'm so very sorry.

Zoeyjane said...

I was sent here by PsychMamma. I wish I could offer some words that would do anything to ease your grief and pain. I'm so sorry. Thinking of you and hoping you all get some peace, as small as that sounds.

Molly said...

I don't even know what to say. He is a beautiful boy and I am so sorry. You are in my thoughts and prayers.

Betsy said...

I'm so very sorry. I will continue praying for all of you.

jennifer said...

Thank you for sharing your story and lives with us. I feel as if we are old friends even though we barely spoke and never met.

Oh, how I can feel your pain just as I read. I wish there were words available to say to make you and your family feel just an ounce better. I am a mother of a child with multiple medical issues and I know how important it is to have support. I hope, maybe, you find some sort of comfort in your readers support.

You are constantly on my mind, in my heart and in my prayers. You, Gavin, Adam and Maddie. My God cover you all in his perfect peace, abundant strength and unfailing love.

bernthis said...

I am sending you a giant hug and a hand to hold. I am speechless. Just wanted you to know that if there is anything I can do....

Anonymous said...

I'm so sorry to hear this! I am praying for Gavin - he is such a beautiful little boy - and it is hard to imagine what you all are going through watching him fight this with his little body.....

Praying in Texas

Kathy

Wifeof1Momof4 said...

Praying with you as you walk this path. I KNOW just where you are right now.

I appreciate your transparency and sharing your journey and Gavin's life so openly on the blog.

Praying God's comfort for you and that you continue to enjoy each day God gives you. We really all should be doing more of that.

Sarah said...

Praying for peace, comfort and clarity during this most difficult time for you. I pray that you will get the time that your heart is still needing, that Gavin's doctors can find a way for him to not be in pain and that whatever needs to fall into place before he passes...will happen.

I have followed enough little ones with Mito...that for me this is not unexpected. My son has a different DX but know that your son and your family has been in our hearts for months and we will continue to pray most earnestly that what happens...happens in the most peaceful situation as possible.

gramma said...

Im so sorry to hear about Gavin. I had no idea of the journey you were walking. How do we let family get so lost. We send our prayers and best wishes to you all.