Wednesday, November 18, 2009

Finding Our New Normal...

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I kinda feel like I am having a flashback in time, when Adam and I first came to the realization that our life was not normal -- when we found our new normal. Our new normal included a life of chaos, uncertianty but was also filled with lots of life and love. It was defined by hospital walls, yet held the anticipation of all life had to offer once we found freedom for a few weeks or days at a time.


Gavin is gone. Although I would do anything to have my little boy back, truth is he is not truely gone, as his very essence pours from our little family. Our very souls hold fast to the spirit of hope, love and joy God chose to teach through Gavin's life.

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This begins our new normal.


Many are wondeing just how Adam and I are doing. The truth is we are doing pretty good. I can't begin to explain te heartache Adam and I experienced while watching our baby boy suffer for three and a half long years. When I say suffer mean true suffering that no human being, yet alone a child, should have to endure. The last 52 hours of Gavi's life made Adam and I fully understand that Gavin's work here on Earth was finished. Gavin's little body was done -- his spirit was ready to experience God's total and perfect healing -- our family was ready to receive God's total and perfect healing.


We will never forget.


Please never forget our little fighter. Remember the impact he had on your life. Welcome us back into your lives -- we ate ready to redefine life as we know it. Feel free to ask questions about his last days. We want and long to talk about our little boy. His death, although so painful, was a beautiful experience we will never forget -- laying cuddeled up with our baby boy and watching God's total healing power flow through Gavin's broken tired body.

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If you are wondering how Madison is doing -- just look at these photos. Although she misses her little brother I think she too is finding healing -- freedom. She is finding peace and is more than ready to have her mommie and daddy back!

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65 comments:

kate. said...

Welcome back? You never left. I'm so glad you finally got internet - I'm sure I speak for many...these posts were missed. A lot. I will never forget the impact Gavin had on my life. And I will always be grateful for the impact YOU have on my life. You make me want to be a better Mom. I love you guys. Always have - from day one - and always will.
xo

Anonymous said...

Hi - I just shed some tears at my office desk...thanks! (Pop-Pop)

Hall Family in MD said...

((Hugs)) Praying for you and your family in this new and next season of your lives. Know that Gavin's death was not in vain and neither was his too short life. In his last days, he encouraged people to pray harder, love better amd hug longer. I was always be thankful for getting to "know" Gavin and your family through the blogesphere.

Misty Rice said...

As painful as it must have been to listen and watch him take his very last breath of life here on earth.... as a mom ( a parent), I think I would prefer the same thing for my own children. To be there to hold them, love them, cuddle them and assure them how much they are loved and going to be missed, rather than in a tragic death where I didn't get to say goodbye or cuddle her or comfort her till the pain stopped.

He is a beautiful boy. He will be missed.

As you try to learn your new normal, and have such beautiful trust and faith in GOD about all of this.....

I am happy to see you in a home and as a family.....

Keep GAVINS legacy a live.

God Bless.

Stephanie said...

Glad to see you're back on your blog. I really look forward to your posts. Your words and Gavin's life have greatly given me a new spark in my Christian walk. Thank you. You and your family continue to be in my thoughts and prayers.

Stephanie in CO

Alicia said...

Wow. Just wow. You're strength, your attitude, your peace... are infectious. Gavin has touched the world, no doubt, but you have too. You give parents of kids with special needs hope, and drive, and a hip check on our own attitudes! Thanks for your transparency, and the gift of your storytelling. I find my mind wondering to you during the times that I let that little creeper sorrow have its way with my heart. Your words have helped to bring me back. God IS good, even in the worst of times....He is good.

mkcmom said...

Such beautiful eyes. And a happiness that reaches deep into her heart. May you all find healing with the laughter that fills each new day!

Carolin said...

I don't know where you got that strength.. must be from Gavin!!! I'm sitting here and look at my little 9 month old girl and I have no idea how I would deal if something would happening to hear.. But I guess it's true, you grow in it. As we all do grow in to be parents and deal with all the little problems and joy, you also grow into dealing with more serious and more frighting things.. or even death.. could it really be that you somehow learn to deal with the fact that your children will die before you??

You are truly a hero.. I still hope that never ever in my life, in their life something will happen to my children.. but if something happens I just hope I can find the peace that you found.

I love the Pictures of Maddie, what a beautiful little girl and she has that wisdom in her eyes.. Gavin gave her too a big gift!!!

You're right Gavin is everywhere I can see him in the words that you wrote I can see him in Maddies eyes!! How wonderful!!

Phyllis said...

So glad you are back. You have such a gift for writing (in addition to your mommy skills, photography.....)I am glad you are all doing okay. I'm sure there will be good days and bad. I enjoy reading about both.

Mark Lopa said...

Karen, you are so strong. I think you're strength is going to help *us* get through this, and we haven't even met you or your family. You are amazing people.

I looked through a lot of the pictures Adam has on his Flickr account and put all the ones with Gavin smiling as part of my favorites. It shows Gavin was at many times happy and enjoying life...at the beach...on the carousel...with his toys. It is a blessing he was born to you, because you allowed him to live his life to the fullest while he was here.

God bless you.

Mark

Kerri Lopa said...

I don't know how you guys can be doing better than me. Everytime I think I am doing ok and then I read your blog or I see a post from you on twitter and I cry all over again. God bless you guys. You are amazing.

Heather Nicole said...

beautifuly said karen

britta said...

Karen, I understand when you say you want to talk about it. I think a lot of people who have never experienced heartache through tragedy don't get that it does help to talk about what happened. 7 months ago, my best friend went missing, and then a month later, he turned up in the Mississippi River. He was most likely abducted. I think people think I am crazy when I want to talk about what happened and what may have happened, but it's the fact of that he is gone, but it just somehow helps to get all your thoughts spilled out to others who either experienced this or not.

That passing of Gavin has helped me deal with the passing of my dear friend Dan. You have given me the strength to see more of the positive of life even after something like this. Not a day goes by that I don't think of Dan, and I actually think about Gavin a lot too! Grief sucks...you can't get rid of it and you gotta get through it somehow. I believe the saying "one day at a time" really comes into play with grief. One day I may be sobbing for hours, while the next few days I feel happy!

Love you guys so much and keep on writing!
I have blogged a lot after Dan died, and it just helps to get my thoughts and emotions out.

Peace be with you.

Sarah Thomas, Nora's mom said...

You are all amazing. I've missed reading Gavin's blog so I've been following you on twitter. Indeed Gavin is still here, he has forever touched our lives. I see him in Madison's eyes. Nora and I will continue to wear our mito shirts proudly and tell Gavin's story of hope and inspiration.
Thank you for updating us on how you all are doing. I've been thinking a lot about you three.

Anonymous said...

Glad to hear from you, and updating the blog..
I have cried and prayed for Gavin.. and I am so glad he is in heaven now. SO GLAD.

You are right, he suffered much more than any human should have to, especially a child.

Jesus has wiped the tears from his eyes, and now he is free from the weak body he was trapped in.

You guys were excellent parents to that little boy, good job! He is with His Father in heaven now and we will be joining him soon!

God bless you, and continue to give you peace that passes understanding.

Danielle said...

I will truly never forget the impact Gavin's life and story had on my life. It is good to know that you are finding a "new normal" and I will continue to pray for strength and healing for your family.

Anonymous said...

Once again things that you have written in your family's blog have just stopped me in my tracks to ponder and absorb the truths that you so easily share! I too have been drawn deeper in my beliefs through following Gavin's journey. I know that we serve an awesome God and that somehow he guides us - often through others - thank you for sharing your journey and your wisdom that you might not even realize is just that - wisdom! So glad to see Madison's smiles and your beautiful photography!

Dannette

Tiffany Lockette said...

What a beautiful post. May God bless each of you as you go from day to day. I hope you settle into your new normal and find peace. Gavin was such a beautiful little boy and he will be missed.

Snarky Mom said...

I don't know your family personally but my family will never forget your Gavin. I will strive everyday of my life to parent my children with the grace, faith and strength that you've shown in every blog post. Thank you.

gilda said...

Thank you for still wanting us very much a part of your lifes. I will never forget your beautiful little boy, he has made a huge impact in my life. Your words make me tear up everytime I read them your love for the Gavin and the Lord is so strong.I too had to find my normal when my father passed away, he had many health issues and kidney failure. I wanted to hold on to him and keep him here because at twelve years old I just did not understand. As I grew older and learned of the hard life of doctors and hospital stays and surguries my dad was just tired and ready to go home. I am now 35 yrs old and understand that my father is in a better place never to hurt or worry again about the pain and suffering of always being sick. Gavins story is truly one that will never leave my heart thank you for letting me share in your sorrow and your for sharing your happy moments too. Please remember your family is always in my thoughts and prayers.

Anonymous said...

Hi Karen and Adam. Your thoughts were marvelously expressed. I hope that you received my email today about Gavin's story continuing to reach out to others today and thank you for sharing the pictures of Maddie, they are beautiful as always. Be blessed and be safe in Him. ~Debbie Heisey

Mark Lopa said...
This comment has been removed by the author.
Mark Lopa said...

I just realized Gavin and Madi have the same deep blue eyes. No doubt that is part of Gavin living in his sister. Now whenever I look at her, I will see Gavin, too.

Anonymous said...

I'm glad that all of you are doing so well....Gavin is such a beautiful little boy- he will truly be missed here ...I'm so glad that Madison is getting thru all of this like a little trooper - she is just precious....You are all an amazingly strong family and so full of faith...that I can't help but be amazed - You have all impacted my life

Thank you for sharing everything with all of us!

Kathy in Texas

Beth said...
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Beth said...

Beautiful, just beautiful!!
I will never forget him, and will continue to follow you and your beautiful family. So glad to hear that you are all doing well.
With much love,
beth in colorado

Amber said...

I am so glad to see this post. You all have been on my mind so much in the past few days. Gavin's life has had an incredible impact on my life...but your life has had a huge impact as well. My 21 month old son has mito, and by seeing you go through these intensely difficult times, it has taught me so much. I really so appreciate you letting us have a small window into your family all this time. It has helped on levels that you do not realize are possible.

Katie said...

Madison is precious!

Lynne said...

Karen,

Thank you for sharing your son with us, he touched so many lives. Your post brought tears to my eyes - he was so loved and brought love to so many. I'm sure Ally welcomed him to heaven with open arms and her beautiful smile. They are both healed now. May you find comfort in your memories, the lessons Gavin taught all of us, and in God's love.

Lynne (Jill's friend in Pgh)

Reesha said...

I am very happy to see such excitement on her sweet face, despite such hard times.

Heather said...

Missing you all here in blogland and knew you would return when the time was right.Your post today exudes faith and hope,just as Gavin's life here does.And it still indeed ... does.As his physical presence is not among you or is his precious face there to greet us with a daily update,his beautiful spirit and his lessons he taught many,remain.He is a gift.One that will not be forgotten.Love from California.

Jimmy DeWan said...

your still in my thoughts and prayers. Thank you soooooooooooooooooooooooooooo much for letting get to know Gavin through updates.

Anonymous said...

My family will certainly NEVER forget Gavin...
I love being your friend and love that Madison and Ava are friends... and that Ava talks about both Madison and Gavin all the time. Having a child around who doesnt "get" death makes life sweet bc she talks about him like he is right here with us. I love that!

Chelle said...

ok, I was about to harrassing you for an update. Thank goodness for Twitter. What a wonderful message to find and what (as usual) amazing pictures of one tough little girl who so deserves to smile. I hope you are settling into your new home. And most importantly- I am so glad to hear you are OK.
love,
The Cates

Robyn said...

As I have just tucked my Gavin in for the night, I can't help but think of you, your family and your Gavin. I feel so blessed to have been referred to your blog by a friend. You continue to touch lives as Gavin did and I countinue to be strengthened just by reading your uplifting words. Your spirit moves me just as Gavin's smile did. May God continue to bless your family and may Maddie continue to smile on for her and Gavin!

Courtney said...

thanks for posting! i think of you so often...

Becky said...

thank you Karen for such open honesty through your blog-- Madison looks beautiful and we are praying for you guys!

Reagan Leigh said...

Gorgeous pics of Madison. I'm glad that you're finally getting back to a new normal, it's just so sad that you have to do it without precious little Gavin. I feel as though I have lost a member of my own family. And it makes me treasure every second I have with Reagan all the more. Sending our love and prayers...

Jodi R said...

You guys are amazing! I am still sheading tears. who would have thought that precious little boy of yours would have such an impact on our lives? I didn't realize it at the time, but he really changed out lives for the better, Thank you for sharing your experiences,emotions and pictures with us! I never saw such a beautiful, amazing celebration of anyones life as I did at Gavin's, Thanks for sharing.

Lacey said...

Thank you for being so open. I have had many doctors lately ask me if I have a DNR for my son. It brings the question on how do I know when enough is enough. Your blog so helped me. I could tell immediatly when you knew enough was enough for Gavin. Now I know that I will just get that feeling, knowing its his time. Thank you for your openess.

JayCee said...

Thanks for sharing. We appreciate the update. Continue to let us know how you are doing and what you are feeling. We will continue praying!

ISO (In search of) said...

Please keep posting. I have been wondering how you family has been doing. I know you will never forget Gavin. As I write my eyes are clouding. I know I never met him in person but his infectious smile and big round eyes were such a joy. Madison does look well. I'm so glad you are choosing to experience joy and not let allow sorrow to consume you. Virtual hugs and continued healing to you.

Cammie Heflin said...

I have thought about all of you so often, I was so glad to see an update today. Madison looks beautiful as always, I'm glad she is smiling and transitioning well. Hugs to you!

Just Breathe said...

Madison is so beautiful. I admire your strength. God Bless. ((HUGS))

Anonymous said...

I'm glad you all are doing well and appreciate Gavin's total healing. I felt the same way when my mother passed after alot of suffering. That is a great way to feel, deal and heal. We continue to pray for you all.
Debbie S. in CT

~♥Alli♥~ said...

(((((Karen and Adam)))))

I will NEVER forget your little boy. He has touched my heart and life, I am so grateful that I found your blog (about six months ago). He will be missed by many people from around the world, I'm sure. Thank you so much for sharing him with us!!!

Karen, you are such an amazing strong person. I love your attitude on this whole thing, I would just be in pieces right row. Gavin was VERY lucky to have you and Adam for his parents!!!!! (and Madison of course!)

Hugs and prayers, God bless. ♥ ♥ ♥

Katrina said...

You are a beautiful family! I pray that the Lord continues to give you peace and blessings. Thank you for sharing your Gavin with us! And thank you for showing so many how to continue to have faith in God and love Him even when things didn't make sense. In all your family's pain, weakness and suffering you still stood strong in your faith!

I love going back through your blogs and listening to Gavin talk! He had the sweetest little voice....it makes me smile everytime! The video of Maddie rubbing on Gavin's little head is so sweet! Such a beautiful sight to see Maddie with a big smile on her face every time she was with her little brother.

I could only imagine the changes your family is going through. Just know that there are lots of us still praying for you :)

I have a very good friend that lost her son (he was Gavin's age) very suddenly about 6 years ago. I so wish I could bottle up some of your peace, faith and strength to give to her!! She is still hurting so bad and just found out her new baby could have the same autoimmune disease that ended her son's life.

I don't personally know you but I love you! God Bless You!

Katrina

Christy said...

I am so glad to read that you are finding your new normal and that you are all doing okay. I only just came across your blog on Nov. 7, yet I think about Gavin - and your family - every day. As the mother of a medically fragile child (who wasn't supposed to survive) I think I can truly appreciate what it must be like to live life without Gavin. No tubes, no schedules, no appointments. Freedom for his soul, and freedom for yours. I think about my daughter's life - and death - everyday. It is a weird way to live life. And certainly not a way that most would understand.

I just want you to know that Gavin - and your family - are in my thoughts. I never met him. Yet I will never forget him. Thank you for sharing him with us.

Anonymous said...

You guys are amazing..I know I will certainly never forget Gavin and what he taught me about life...as well as the two of you and what you have taught me about life and faith. I wanted to tell you that at Gavin's celebration, Maddie was incredible! She is a star!
Please know that our family continues to pray for you. And thank you for this blog and including us in your journey.

Cathy said...

I only came to your blog in Gavin's last few days in his eartly body. My heart broke to hear the pain you talk about and I found myself pray that God would cradle him to Heaven. I am the mother of a little girl with full Trisomy 18 and who is 4 1/2. She is on borrowed time. I pray that when her sweet body can't go any longer I have the faith and strength that you have to let Gavin go home. To be whole again. Thank you for sharing his life. To Madison who is such a beautiful girl that she enjoy all her mommy and daddy's attention.

Kelsey said...

I have just tuned into your blag within the last few weeks,I started from the beginning and worked my way to the most present of posts, I found myself in tears throughout. The impact that little boy had on life will truly shine through the stars, you can see it in his sisters eyes, she is sparkling. Thank you for making me realize how to make the most of everything that comes across us in life.

Susan Hart said...

Thank you for continuing your blog as you start a new chapter. We continue to pray for you, Adam and Maddie as I'm sure you will have your ups and downs. Isn't God good though to give peace and strength when we need it? I have a CD for you that I had made when my brother was battling Leukemia. I will try to get it to you through church. Oh, and we will never, could never, forget Gavin!

Tina said...

I am glad you see you post. I, like many others I'm sure, have been checking back. I don't use Twitter, but I admit I have been following your link on there. You said to feel free to ask questions so I will. You mentioned that you had a photographer come to the hospital during Gavin's last days. I'm curious about this. NOT that I am asking if you are going to share the pictures. I'm sure they are sacred and precious and private. I'm just curious as to what type of pictures they were. And secondly, I know it is very early in this healing for you, but I think you should eventually print this blog as a book. It would be a beautiful tribute to Gavin. It is so beautifully written. Are you going to continue with this blog or eventually start another? I'm sorry for the questions, but honestly I've been doing a lot of thinking about you guys and these are a few things I was wondering.

Much love from Saskatchewan

Anonymous said...

Your interpretation of Gavin's life is exactly how I see it as well. He had a job here on earth and when it was done he was called home. I think he did his job exceptionally well. I feel that one of his roles was to teach about love and faith during suffering...how both grow stronger, deeper with meaning as things are more difficult...how both will hold you up when things are down. And how even though you can't see him, Gavin is still with you...in your heart.

God bless,
T Tran

IFEA said...

I am impressed with your attitude, I truly am! Knowing that Gavin is healed and perfectly healthy and being with GOD must be the hugest comfort for you. I pray that you all are protected and can heal too. You are a wonderful, strong family and Gavin is a true gift for all of us!
Iris

mommak said...

I don't know you personally but have read your blog for awhile now... I was first MOVED when I realized that Gavin was the same age as my "baby". Reading what Gavin was going through each week made me SO grateful that my boy was healthy and at home with us - but seeing your outlook on life through each post was SO encouraging to me to enjoy life (no matter what's going on - good or bad). You just enjoyed every moment and capture SO many great images of him (even with all his tubes and in the hospital)... you won't know what an encouragement that has been to me! Just to enjoy life and not worrying about everything being "perfect" or "normal" all the time.
My heart aches for you not having your little boy in your arms anymore but I rejoice with you that you know his Father will hold little Gavin more than you ever could and love him until you get there! :)
Thanks for being an example of God's faithfulness and love...
I look forward to hearing more from you. Praying for your family!

Tyler's Mommy said...

like others, i'm not familiar with your "old" normal but if it's okay with you, i'd love to stick around for your new normal....

gavin was such a special soul, and i for one would love to hear more about his last hours. i went through my mom's last hours just a few months ago, and after we made the decision to remove her vent (after lifting her sedation and getting her blessing to do so)....it was such a beautiful experience that unless you go through it, i don't think it makes any sense to say that watching someone cross over to the other side is really a beautiful thing. yes, it was painful and sad beyond belief....but i know she is up in heaven right now, probably watching gavin run on heaven's beach and laugh and play.

anyway, yes. thinking of you all and i'm along for your new normal.

Anonymous said...

What a relief to see Madison smiling away! I was so concerned, but I guess having her mommie and daddy all to herself might not be a bad thing for her. What an amazing family you continue to be even after losing little Gavin. Continue to enjoy peace! Have a wonderful Thanksgiving! I'll be thinking of all of you.
-Amy O'Connor
I hope you and Madi enjoyed your bracelets!

Anonymous said...

Karen: You are such an example of the Strength given by God when we need it. God has worked through you all to show His faithfulness. We will never forget Gavin. His will, his fight for life. Your love and support as you parented him. We wish You, Adam & Madi a blessed life as you pick up and move forward with your life and the awesome memories you've made with your handsome little boy.So glad you are doing well. We will continue to pray for you.
Love you guys! ~Marilyn & Randy

jennifer said...

Beautiful. Just beautiful to see your amazing family find peace in the sadness.

Mona Parker said...

Really nice post. Full of faith and real Bible hope. Praying that you all will continue in His grace and flourish in every aspect of your lives!

Just Another Ordinary Miracle said...

Gavin has his own place in my heart, and my family's heart,and especially Ivey's. The past three years watching you from afar, living this real life here, I found a friend in you. Comfort that someone else had the courage to get up everyday and face the unknown and find joy in it - no matter the cost. I hope to meet face-to-face someday soon. I have watched our two miracles change lives and make this world a better place. You are living my future. I truly hope you can feel the support from here. One day in the future I will need yours. Gavin was and is a miracle. Unmistakably. I have often thought that Ivey carries visible scars. But honestly, maybe that is better, maybe, just maybe the beauty in the physical is that our children have never had a day where they carried the burden of a scarred heart. They never have known a world not filled with love, even in the hardest hours, where often my own hands inflict pain on her, she knows it is out of love. I don't understand fully, and I guess I never will. Your family's courage has impacted so many lives. God grant you the courage to trimph in this new normal. Welcome back -to another new normal.+

Audrey said...

Our boys continue to pray for Gavin, for now and when he was alive. They've prayed for him for so long, it's strange to not pray anymore and since they're 7 and 5 and unsure of what exactly to pray for, they modify a little and just keep praying. I love it! Thank you, Adam, Karen and Madi for taking the peace and strength that so many of us have prayed for God to give you. I just studied Esther with Beth Moore this summer and we were reminded/taught that just because people pray some mighty stuff for you, doesn't mean you have to take it. Friends, you honor us in doing so, as well as being so very real about who you are and what you're feeling. Thanks for being you!
love,
Audrey

therextras said...

Thank you. Thank you.

I can see some of Gavin in Madison's eyes.

Barbara

The Hopkins Fam said...

I don't know how you do it. I really don't. You prove God over and over. Your resolve and hope are a shining example of the Lord - only someone who is totally dependent on the Lord could have the mindset you do day in and day out. I know at least 60 people have already replied to this post, but I absolutely HAVE to reiterate:

We will never forget.

I probably won't ever get to meet you face to face, and still not a day goes by that I don't think about that sweet baby boy. The Lord chose you, just like he chose Mary, to be Gavin's mom, and you succeeded to the fullest. As a young mom, I've learned so much from you and Gavin. Madi is a blessed little girl. Welcome to your new normal =)