Friday, November 20, 2009

Remembering...







When Gavin was admitted to A.I. duPont Children’s Hospital for the last time about one month ago the memories from that day sit like a cold rock in the bottom of my stomach.  He had a high fever with spells of low O2 saturations and Adam and I felt he needed to come in to be admitted.  As always Gavin’s attending Doctor was right there to support us in our decision and had us come right in.


Dr. R met me down in the ER and the words he spoke will forever stay in my memory.  He walked in the room like a man with a purpose.  He’s not very good at hiding when there is something on his mind -- in fact his very presentation was something I had always dreaded over the past three years as it was usually followed by some kind of bad news of difficult decision needing to be made.  He sat on the bed next to Gavin sleeping in his wheelchair and looked me in the eye.


Does he have anymore good days?  







It was that simple.  In that very moment I came to the painful realization that I have not really seem my little Gavin in many months.  The Mito had begun to take his mind.  He would scream for hours on end, not wanting anything in particular.  He would either sleep for days or be unable to sleep for days leading to delirium.  We needed to inject intense psychiatric meds into his little 3 year old failing body just to keep him safe from himself -- the pulling of his lines, the thrashing of his body.


These are the things I remember -- these are the reasons I will forever be grateful to Gavin’s doctor, our friend,  who reminded us that our little boy was gone -- it was time to let him go.







These are the reasons I will forever worship a holy and sovereign God who wouldn’t dare let my little Gavin suffer another day more than he had.  


These are the reasons Adam and I find perfect peace in knowing that our little boy is no longer suffering.




Photo Credit: Ryan Estes Photography, NILMDTS



42 comments:

Anonymous said...

Thank you so much for sharing your heartaches and joy with us all.....I can't even begin to imagine what you all went thru but I know that you were able to have 3 beautiful years with Gavin and will always have those memories......I'm in awe of yours and Adams strength and faith in God!

blessings,

Kathy in Texas

amy said...

wow. our God is so good. i'm so glad for your perfect peace.

Tina said...

These pictures are so powerful. I envy your strength. Thank you for sharing them.

Gavin said...

My name is Gavin and I stumbled on your post doing a Google desktop search on our Mac to find my doctor (ironic).

I won't go into too much personal detail except to say that I rarely reply to blogs for people I don't know. We have a 6 month old baby boy (Wolfe) and for the first time (in my 41 year lifetime) can identify with the child to parent connection.

Reading through your blog, I just spent the last 30 minutes balling my eyes out. I would not wish what you have gone through upon my worst enemy.

I will hug Wolfe a little tighter and appreciate him even more as a tribute to Gavin.

You are remarkable parents and I wish you guys all the best.

Hoping for happier times ahead

- Gavin (Portland, OR)

Anonymous said...

I will forever look to u as amazing strength and devotion. im so proud to have u as my sister. I can only imagine the intense amount of emotion u feel each moment of every day. i love u and cant wait to b home again to watch u madi grow up and enjoy every moment being an aunt and ur sis. keep smiling! u light up this world...

sarah endy said...

Your strength and faith is such an awesome testimony! It was so good to see you the other day Karen! Can't wait to get our families together again. Thank you for sharing your thoughts and pics! Love, Sarah

Stephanie said...

Beautiful pictures! The love and tenderness that is captured is amazing! Thank you so much for sharing your sweet baby and family. It can't be easy to do!

Stephanie

Reagan Leigh said...

What an amazing post. What an amazing person...amazing family. Those pictures speak volumes. His entire life everything you did was for him and in the end I believe you did what was best for him as well (even though it must have been excruciating to do as a parent). You are amazing, inspirational people. And Gavin was amazing! I will never forget him.

grey like snuffie said...

Precious photos...God is God and we are not...thankful He knew what you needed.

Heather said...

I spent a long time with that first picture Karen, looking at your face.Seeing in your eyes that deep unconditional love for your baby boy.I saw,with clarity,the look of a mother, that would do anything to end the suffering of a child that she loves more than herself.I sat with that photo and I prayed for you and your aching heart,knowing that the ache won't go away but it will evolve and change and your strength once again will come from a tiny but mighty fighter as well as our mighty God.Sending you love from California.

MFA Mama said...

That first picture is...well, it's just breathtakingly beautiful and agonizingly painful all at once.

What a wonderful doctor you had in Dr. R.

Thinking of you.

Anonymous said...

Beautiful pictures!!! NILMDTS does such an amazing job. Glad to see you are back!

Anonymous said...

The photos are beautiful. Thank you for sharing. I'll keep you all in my prayers.

Troy Schmidt said...

So much and yet peace at the same time. THAT is how I know that we have a God who TRULY loves us.

Reading your words about Gavin's doctor, your friend... what a beautiful thing. To have a medical professional who is also a friend. One of the single biggest blessings in any "medical" family's life.

MommytoJonah&Jude said...

I don't know you personally, but your family is in my prayers daily. We have two young sons, and I cannot imagine the heartache of seeing either of them suffer. Earlier this year, my husband was involved in a near fatal car accident and he was ejected from the vehicle. He suffered 17 fractures including a C2 fracture that should have left him dead or paralyzed at best. He also suffered three head fractures. Today he is walking without the aid of a cane, in his right mind, and back to pastoring our congregation. For all of this, I am grateful. However, had he lost his mind or continued in the drugged psychosis he experience for the first two weeks or so, I don't know if I or if he could have endured that for months on end. God is gracious and He does all things well. I am rejoicing with you that your sweet Gavin is whole and healthy and being cared for in the loving arms of Jesus.

Praying His comfort surrounds you like a warm blanket and heals you to your core. Your family is beautiful.

Anonymous said...

I think of your family often, I couldn't even imagine going through what you went through with your little boy. I have a 5 year old little boy, and I just can't imagine. I love your pictures. Sweet Gavin is finally healed.

Phyllis said...

Thank you so much for sharing your innermost thougthts with us. I am crying now and what remarkable parents you are and what a fabulous doctor is sounds like Dr. R is/was. Always look forward to your updates.

Elle Evangeline said...

You're family is on my mind. . . today and always. Beautiful images . . . beautiful message.

Aunt Becky said...

I'm sending you love and light.

Misty said...

thank you karen....for sharing your feelings, words, and photos..

many prayers still, for your healing.. and tons of smiles toward heaven for Gavi!

Misty

kate. said...

You.Amaze.Me.
If you knew how many people you inspire in more ways than you know...it would blow your humble mind. I am one. You help ME be a better Mom. A better advocate. A better me. Do you know this? Do you know that people talk about "that Mom from Dupont" and they're talking about YOU? How you inspire? How you coped? How you touched people? You probably don't know - which is why you need me. *wink*
Tonight - I'm remembering. I'll never forget Gavin.

Jen said...

Your faith is an inspiration to all and a credit to Gavin's life. He will always live in my heart, and I never had the privlege of meeting him. What a special little boy you were graced with! And Madison seems to have the strength and dignity adults aspire to possess!
I pray every night that God continues to grant you and your family peace and comfort while He holds sweet Gavin in His arms.
May the peace of Christ always be wtih you.

Meagan said...

I am humbled by your strength, faith and willingness to share the most painful time of your lives. My daughter also has mito so I know all to well the difficulties our kids face day to day having to deal with this disease. I dread the day that I have to have the "final talk" with her docs. Many times they have had to (gently) remind me of the progressive nature of mito. I only hope that I too am brave enough and selfless enough to recognize when her little body says it has had enough.

My prayers are with you and your family. You are truly amazing.

Lorra said...

Thank you Karen for sharing your thoughts and precious pictures. You are a wonderful, loving mother. You and Adam gave Gavin the best life he could have here on earth and that is why God chose you to be Gavin's parents. Praying for sweet Madi as she misses her little brother. May you continue to heal and grow as a family. Love to the Owens family~

Anonymous said...

Dont ever dought the decision you had to make. You made the right one for your family and Gavin. As you said he left a long time ago. It was just his body you where taking care of. Try to put the last few months behind and remember your little Gavin as the happy little boy you once saw. If you look deep in those eyes you can see him. His body is gone but he will NEVER be forgotten. He has done more in his 3 years here then most will do in a life time. You and Adam go have some fun with the daughter you have. She will bring the kid out in the two of you. Dont worry Gavin will always be watching you.

Julie from Wisconsin miss you sweetie...

KK said...

Praying for you. How unselfish of you to let him go. God is good and Gavin is better than ever. I'm so glad you know that!

Cindy Heintz said...

Your celebration for Gavin was so Amazing...just like your family! Thank you for sharing your life with all of us. We will NEVER forget those Beautiful blue eyes and that Big Smile Gavin always had for Everyone.
Gavin is living the "DREAM"!!
Madi.....your blue eyes will shine on for your handsome little brother.
We are ALWAYS here for you if we can help with any thing. Much Love to All.
Your Always in our heart, thoughts and Prayers.
Love you ^Sweet Gavin^ and Our ^Sweet Ally^
To the Moon and Back :)

Anonymous said...

God bless all of you. Your story is heartbreaking and amazing.. I have never met you however I have seen you and Gavin in the hospital many many times... Gavin was a beautiful little boy, You are an amazing mom... Your love for your child makes me a better mom, I have witnessed true and unending love, amazing... Your faith is also an amazing gift that I hope you keep close to you and share with others as freely as you do today... Also I must say that you are the essence of cool, your photos are amazing and heartwarming, and Gavin's hats and leg warmers were the best... God Bless you always...

therextras said...

Your reasons have meaning for me, too. Thank you.

Barbara

Raegan said...

Your family is amazing and beautiful.

sandra said...

Amazing...Thinking of you all...

Thanks for sharing all you do with us.It is not easy and boy did you explain Dr R to a tee!!
Sandra
xoxo

Misty Rice said...

Man.....

I sit hear wanting to say something, but so lost of words.

I hear and feel your pain. Its very sharp and I have to remind myself to take a deep breath.

My heart aches for you as a mother.

I know the love of a child, but I do not know the pain of losing one. I can only imagine that and when my mind goes there IT REALLY HURTS and I almost can hyperventilate.

Now be in your shoes....

How does one parent wake up the next day?

Take that next step?

Move forward in life?

For me it could only be GOD himself and the look into my other childs eyes that could get my limp body to actually move.

I admire your strength. Your faith. Your love for Gavin.

We don't have answers and may never have them.....

but we MUST MUST MUST believe in our GODS greater purpose, or what would we have left.

I DO believe that we are no forsaken. GAVIN has not been forsaken nor forgotten, but that he is healed in whole and smiling.... as we are left here to hurt and suffer and mourn the little boy we all fell in love with.

I wish there was more I can do....

I will be praying for you tonight......and I often like to pray that GOD shine the moon a little brighter on you tonight, and may you feel warm and at peace knowing he loves you as much as he loves Gavin. He is taking care of Gavin, and a little bit of you is with God in heaven too with Gavin.

God Bless.........

Anonymous said...

My heart truly goes out to your entire family. You are an amazing mom and you have raised beautiful children. I admire your strength, courage and spirit. You inspire me to be a better parent. Although I have never met Gavin, I to will miss him dearly. My prayers and thoughts are with you and your family during this time of healing and finding your new normal. God is with Gavin and your family. One day, each of you will be united again in Heaven. Till then, Gavin is smiling in Heaven because he is proud of all wonderful things his mommy and daddy are doing with their lives. God Bless!

Erin in CA

carrie-anne said...

Beautiful and heartwrenching words. Everytimt you speak I am touched. I have had the most amazing time with my daughters because of Gavin. At his service the girls were so touch by the Spirit. Wanting to have a better relationship with our Lord praising him. Thanking us for helping and leading them. I saw my girl raising her hands to Him with her eyes shut. So what I bottomline want to say is this. Thank you. Thank you for sharing Gavin's life with the world. Thank you for sharing your experience. Thank you for showing your Faith. What an awesome example of faith and love. I am praising God and thanking him for a néw day to worship him-and to love my family. Be blessed today and everyday.

Jenkins said...

Thank you for sharing your journey with so many...for being so candid and open...so that we all could love your family and Gavin.
The impact is big and will have a ripple effect for a long time.

Thank you for sharing the pictures, giving glimpses in to your world and the beautiful family with all the joy, sorrow and faith.

Just Breathe said...

I am in awe of you, you are so brave. I know you sorrow is deep but your strength is amazing. Your Faith in God is so beautiful.

Anonymous said...

Thank you for being you!
Thank you for letting us in on things!
Thank you for obeying your Heavenly Father!
THANK YOU!

Toknowhim said...

Thank you for sharing your life and the life of your precious boy with us... Your family glows with the love of Jesus...

jennifer from pottstown said...

I learned of your beautiful family through some friends in the area and have been intrigued ever since. The awesome love and closeness that you all share is very inspiring. I am a mother of three small children who cannot even begin to imagine the heartache that a mother must endure with the passing of her child! Karen in particular has been an inspiration to me and through the sharing of her expreinces has taught me to hug more and love harder. Because of that I would like to say thank you Karen from the bottom of my heart! Your family is often on my mind and my thoughts and prayers are with you. Both Gavin and Madison are beautiful children and forever will your motherly love be etched into my heart.

Kris said...

thank you for sharing this. no words, really. just tears. and thankful the Lord is with you all. and that gavin is with Him.

ISO (In search of) said...

I thank God with you. I also thank God that you were granted a kind and sensitive doctor who knew how to ease you through such a heartbreaking decision. The next time you see Gavin he will be fully restored and his body pain free.

Janice said...

The Lord has great and mighty things in store for your Beautiful Gavin! You will miss him for a lifetime, but be assured you will see him again in eternity. What a wonderful promise he gave us!