Friday, November 16, 2012

We are Not the Nordstroms Family

This past week, I've come across several facebook postings applauding this ad:


I thought a lot about that Nordstroms Family  as we sat in our hospital discharge meeting yesterday. As I mentioned last post, Our Family has made the difficult decision to discharge MC to a pediatric hospice home.

It's impossible to put into words how traumatic a decision this was-- and will continue to be for the rest of our lives-- other than to say that we are not the Nordstroms Family. 

While the Nordstroms Family has apparently been gifted with both Time and Celebration, Our Family has not. 

Our Family has been instructed that we must choose between the two, and that while under no circumstances can we have both, there is a possibility that should we choose one, we could end up with neither.

I've been told many times that there is no wrong answer, but, in fact, it would be far more fitting to say that there is no right answer.

I have been told that we could choose Time, and be given a greater possibility of being present for future holidays to come, however, should we choose Time, we will not be allowed to celebrate. We will not be allowed to be together as a family. We will not be allowed to exist in a comforting environment. We will not be allowed to Live, even though we are present. I have also been told that should we choose Time, this does not mean that we will be given it.

I have been told, that, in the alternative, we could choose to Celebrate. With this decision, we could be together as family, we could exist in a comforting environment and we could not only be present for each other, but we could in fact Live. If, however, we choose to Celebrate, we must agree to relinquish our Time. 

Last week we made the decision to Celebrate. Yesterday we necessarily confirmed that decision by putting it into writing. Tomorrow I will put up our Christmas tree. On Monday we will move MC to his new home. 

I love Our Family and I wouldn't trade it for the world, but it's days like Today that I am left wondering what life would have been like... if only we'd gotten to be the Nordstroms. 

60 comments:

  1. What a little treasure he is! My heart beats for you, Bernadette, you are my true idol.

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    1. Thank you for sharing your heart. The love of this community is astounding and so very much appreciated.

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  2. ...sending you all the love and strength I can muster with mere words!

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    1. Thank you, edward. Well never forget that it was people like you who encouraged us to "find" hayden so that he could be a part of our lives. We are so very lucky.

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  3. That is absolute agony. Prayers to you.

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  4. Oh what a beautifully tragic post. Enjoy celebrating.

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  5. Celebrate every precious second you have with MC and make everyday a holiday! Sending love your way -

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    1. Our motto. Every day is a celebration. Thank you for your unending support, Joann.

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  6. I am so sorry that you can't have both; you truly deserve both. I haven't been about to think of the right words to say to try to offer in support in a while. I had a dream the other night that I met you guys at the hospital and MC was finally as healthy as could be (he also had a long blonde mullet, but that's how dreams work). All I really know to say is that you're family is in our hearts and prayers. I think about how strong you two have been on this incredibly long journey and I think about it almost everyday. I wonder if I could be as strong as you have through all of these roadblocks, much-less be strong enough to even offer support to others going through their own issues, like you've done. You two are incredible parents to two very special children. I am happy that you're able to celebrate that. Wishing you guys all the best in this transition. C&B

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    1. Well you certainly thought of exactly the right thing to say. And thank you so very much for sharing that dream--the first time duane and I have laughed in a long while!

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  7. He looks so much like his sister in that picture!

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    1. All of a sudden! We can't get over it. Thanks for noticing too:)

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  8. There is never a right decision or wrong decision in what is only described as a decision no family should have to make. As life sometimes has it, it does happen but never wonder what decision someone else might make because no-one would ever know unless they were in it. Your absolute love for MC shines through your decision and all your posts. Sending you my thoughts and prayers.

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    1. Thank you kim for your encouraging words as well as your lovely previous post. Our family is so lucky to have such an incredibly unique support system all around the world.

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  9. You are a very brave woman. God bless your strength and courage and may you find inner peace someday. Your story has touched me beyond words and I will always remember you and your family. This is not some expression of pity for your situation, please don't take it that way. Because I know what you are going through, any of us could have gone through it. But the way you have handled this entire situation is beyond what anyone would expect. You are indeed a special woman.

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    1. If I could have one wish it would be to find that inner peace. We hope that this decision will provide our MC with his own and that in turn, we will find it ourselves.

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  10. Just wanted to send a virtual hug.

    To you all :)

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  11. Thank you for letting us celebrate Master Cheeks' life with you. May every moment be a celebration of love and of family.

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    1. And thank you for celebrating him. We let him know every day just how incredibly loved he is.

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  12. To be loved as much as you and Duane and Miss Scarlett have loved Hayden is very special. To be as strong and loving as you and Duane have been in every instance is hard beyond measure. Hayden and his absolute faith in your love will be with you all forever and will live in many many lives around the world. May his world of love surround you and support you always. You and Duane created two miracles of love and the world is richer for knowing them both.
    old ca granmother

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  13. My dear friend I choose to celebrate with you. I feel like these words could have been written by Jason and I. I am so looking forward our non Nordstrom families being together, if only for a moment. You are not alone.

    Sending you lots of love as we prepare to depart.

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  14. I thought of MC and your family the other day when my Aunt wished everyone a Happy Diwahli on FB. Diwahli as you may know is a holiday in India celebrating light, particularly inner light. Your blog, through posts and photos continuously shows the incredible love for your children and all of your work for their existence displays such light, love and determination. Like that children's song, "hide it under a bushel, no, I'm gonna let it shine!" Wishing you joyful celebrations with MC!

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    1. Thank you for thinking of us! These children shine so brightly in our lives and we are so happy to share this light with others. x

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  15. Dear Bernadette, my thoughts are with you. I've followed along this journey with you and you've inspired me with your courage. I don't think I've ever "met" anyone with a bigger heart and a better outlook. MC and the Princess are so lucky to have you as their mom.

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    1. Thank you, Leah. We feel so very lucky to have MC and Princess as our children-- still pinching ourselves every day:)

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  16. No right decision indeed! We (me!) take so much for granted in our lives, choices you don't get to make, time you don't have to waste, I so wish things were different and you could be blase'too (though your journey makes that impossible, I know). I've treasured your children from afar and send you much love with this tragically necessary transition. Are you able to take some of Hayden's lovely Indian things to his/your new digs?
    x Bridg

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    1. Bridg, we are taking a LOT! I asked Duane if our load is going to look obnoxious when we arrive-- but, hey, we've got 8 months worth of stuff sitting around and are SO ready to use it! Piling it all in the Momobile tonight and looking forward to making Hayden's room HIS.

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    2. I can't wait to the photos!!

      Bridg

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  17. It sounds like you are receiving good counsel. Having been through it, I can tell you that years from now you will look back and realize that it was Hayden who, more than anyone else, made you grow in ways you never dreamed of and changed who you are. Believe it or not, it will all make sense. I'm wishing you all a wonderful, precious holiday season.

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    1. Thank you for those comforting words. It is so easy to question ourselves as we take each little step. Doing my best to stay present and seek strength from my amazing SuperHero.

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  18. Bernadette - although we have never met, I have followed your blog for a while. . You are the most strong, brave and courageous woman I have known. Prayers and love from my family to yours over this thanksgiving season. We will also be busting out our Christmas decor early in honor of Mr. Hayden as my 5 year old says.

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    1. Dear Kristen, Duane and I were close to tears as we ready many of these comments, but when we got to yours, it put us over the edge. The image of your 5 year old acknowledging our Hayden was just too much. Thank you so very much for letting us be a part of your life and for being a part of ours.

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  19. What a beautiful family you are. Wishing you strength and peace.

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  20. 1 day with Hayden is greater than a lifetime at the mall.

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  21. Sending you love and light through your celebrations.

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  22. Then you'd have to worry about your secret cookie recipe all over the internet. (That old email forward was for Norstrom's right? Right? God I hope so. Let's just pretend it is even if it's not.)

    You bring so much to so many. Celebrate the days. You deserve a little celebration. (Ok - maybe a lot.).

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  23. As usual Bernadette you and Duane continue to make the tough decisions for your family having every regard for the outcomes of those decisions. You continue to inspire me and others. Thats very clear from reading your blog and the comments of followers. Strength, karma and much love to you all. You deserve as much time as possible and I know that celebration will still feature within that time. xxx mel

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  24. Dear Bernadette,
    You have made the right decision for your family, its good you had some choice or it may have felt even more suffocating. Enjoy your celebration of togetherness and unity and know you deserve to enjoy it.
    Love to you , the super-strong super-mum! Keep going :-)
    Anna x x x

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    1. Dear Anna, We are so lucky for this choice. It is the first licensed pediatric hospice home in the U.S. How fortunate are we that it's 20 min from our house? Very very grateful we are.

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  25. Again you are amazing. This is why MC is so brave he had you to teach him
    All my love
    Pen xxx
    Gold Coast Australia

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  26. Yet again you show strength that mOst only dream about. Bless you for sharing this journey with us and never ever doubt yourself.....

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  27. Your last sentence resonated with me. I remember seeing families with stair-step children who obviously thought nothing of the miracles in their life. And I remember crying when a relative had a healthy baby boy. I was happy for them, but sad for us and our son with the difficult and short life. It sure isn't fair. And I got tired of people telling me how strong I was. It wasn't like I had a choice. So I understand....completely.

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    1. Thank you for understanding. It is such an incredibly unique path that we travel, and it is comforting to know that others are present with us.

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  28. That is the most priceless mommy and baby photo I have ever seen. Celebrate!
    xoxo Preet

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  29. It is always about making sacred space. Hospice is good at that. Holding you and your loved ones in the light.

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  30. I have been praying for little Hayden for months now. I will pray for peace for your family. Life is not fair, children should not have to suffer, I hope hospice can offer a calming enviroment for him just like the 9th floor does. Every time I see a sock monkey I think of him.

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  31. My heart goes out to your whole family. I hope that your thankschristmasgiving celebration is a beautiful one that you will treasure, and that you find peace in being all together. You've touched many of us in blogland; thank you for sharing your journey so beautifully.

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  32. You know I'm always one to say one holiday at a time...but in this case screw it...celebrate the b'jesus out of this one. Sending hugs from 5,000 miles away.

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  33. Hey you, MC looks so good, you have got such a strong heart and MC needs that so he stays with you forever. Still in my thoughts and prayers

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    1. Thank you, Michael. He has been in my heart for a very long time-- even before I knew him, and he will most certainly live there forever.

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  34. I'm so sorry you had to make this choice. Wishing for you many moments of celebration, togetherness, and peace in your new place.

    MG

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  35. Our thoughts and prayers are with you guys always. Wishing you many moments to celebrate!!!

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  36. Thinking of your family today as you head to Hayden's new home. I know you will fill it with color and cheer and ife and love.

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  37. I am happy your family finally gets to be together and you are able to celebrate your little miracles. Mr. Hayden is such a beautiful and strong little man. The choices you have had to make are just not fair, but you have handled them with such grace. You are truly and inspiration. Sending lots of thoughts your way.

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  38. Eres la mama mas buena e incondicional del mundo,ánimo.

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  39. So sad to have to make this choice. But I absolutely applaud you for choosing to celebrate, choosing to live as a family for the time you have with Hayden. You are the best Mommy he could have.

    BTW, you are a great writer too.

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  40. Bernadette,

    You don't know me. I went to school with Duane and have not seen him in many years. Your story, your blog and your family has touched my heart in ways you can't imagine. You are among so many other things a truly talented writer. You have inspired me to start writing myself. A self help book for women struggling to have children. I lost 5 and finally (long story) got my miracle 6 years ago. Your children are amazing, strong, beautiful blessings and you and Duane well...I just have no words to describe you two! I am so happy to read that (while it is beyond difficult)you have decided to put MC's happiness first. His time here while it has been brief has had such a huge purpose for so many. He has a whole world pulling for him! Blessings, happy thoughts and hugs of enormous strength to you and Duane...your family is a HUGE inspiration!

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  41. The toughest decision but 100% the right one. It's the perfect occasion to be together and celebrate being a family. Happy Thanksgiving to you all, Bernadette. Wishing you a joy filled holiday season.

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