Monday, April 29, 2013

Respectfully Yours,...


Dear loving, kind and thoughtful readers, 

I have been completely overwhelmed by the outpouring of love, support, kindness and sharing of personal stories in my email, on my facebook page, here on the blog and in private messages.  I have been telling friends that in a way it's kind of funny.  I've been trying to tell the world since Gavin was an infant how special he is - I mean really special.  Not special needs.  So part of me feels like yelling "I've been trying to tell you, world!!"  I'm glad you all get it now.  There's just something about Gavin.

I know what it takes to write to someone you've never met.  It takes a certain kind of bravery.  I want you to know that I recognize that and it means so much to me that you would take time out of your lives to compose anything at all to me.  Your messages have been so kind and comforting. Thank you.

I also know the desperation of being a special needs Mom - or the friend of a special needs Mom - or a therapist or teacher of special needs children.  You want things that can be hard to get - answers, advice, equipment, etc.  I have been in  your shoes and I often had very little shame when it came to asking for things, for help, for guidance when it came to getting things for Gavin.  I have been you.

With that said, I just have one very small - and very humble - request.  I am not looking to embarrass or shame anyone.  And I would ask that no one make any comments to that effect after reading this - because I understand where people are coming from.  I just ask that you please not write to me asking if you can have Gavin's walker... or his wheelchair... or his clothes... or his anything.  It's just not the right time for this.  (The only thing we'd happily entertain is selling our Hyperbaric Oxygen Chamber which we've had on the market for a year.  We could really use the profit from that sale now!)

People may tell you (at least I hope they would!) that I go out of my way to help other parents all the time to share what I've learned over the years with Gavin.  I loved (and will love again) reaching out to parents who are holding a new baby - or just getting a diagnosis - and feel completely overwhelmed and afraid.  I loved to offer them hope - and the promise that they will get through this.  I always wanted to plant a seed in their minds and hearts that they would come out on the other end changed for the better - even if it seemed impossible to believe in that moment.

But... right now, it's too painful.  My identity was very wrapped up in all things Gavin.  That job for me is over - like getting fired without notice.  It sucks.  I'm feeling lost.  And as much as I want to help all of you that are writing to me asking questions about diagnoses and puree recipes and therapies and more... I can't.  I mean I could - but I just don't want to right now.

Sometimes you have to tell people what you need.  That's all I'm doing here.  I'm not upset (by any means) at anyone who has already reached out to me.  Not one bit.  But as Ed and I always say to each other - you can't hold anyone accountable for things they don't know.  You wouldn't have known I was feeling this way - so that's why I'm telling you.  I just know my limits and I wouldn't want to silently harbor a resentment if it kept going on.  That wouldn't help anyone.

Again, please don't make any judgmental comments about people reaching out to me or asking me things "too soon."  I know how hard it is to want answers or things for your children.  And if everyone just gives me some time... maybe a month or two... I'll be back.  

Respectfully yours,

Gavin's Mommy.



44 comments:

  1. Self advocating is good. you are awesome and one day you will be ready to part with things. This isn't that day, and it's great that you can recognize that and so clearly and without insult or offense express your self. once again grace under pressure.

    Wishing you peace and comfort.

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  2. I continue to be in awe of your courage, elegance, and class. My prayers and thoughts are with you and your family.

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  3. Everyone grieves differently, and everyone needs time to process in their own way. What you are experiencing is unfathomable to me. I don't think there is anyone that will begrudge you the time and space you need to start to heal. I think one of the hardest things for people to learn to do is tell other people what they need--emotionally or physically. I think we are all afraid we will offend someone by telling others what we need. But we need it, and we have a right to tell our need. You stated your needs graciously (as always), Kate. You take all the time you need. God knows you deserve it.

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  4. Speak your truth! You are the only one who knows what you're going through. Just know that you are in my heart.

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  5. You radiate Grace. Hugs to you and your family.

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  6. Kate, we continue to pray for you each day. I still can't move my dog's bowls out of the kitchen since she passed in February and she was only a dog so I can only imagine how hard it would be to part with anything Gavin's. You have always been the first to offer help to others and I'm glad you took a moment to let others know what you need.

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  7. Cheers to you, Kate. I am so glad you're taking care of yourself.

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  8. Kate, you are such a beautiful writer!!!

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  9. Once again I am amazed at your grace.

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  10. I totally understand how you're feeling Kate. It's too soon. After my parents passed away, I couldn't bring myself to get rid of things so soon after. My sister had no problem at all. I can't explain how I felt. I just wasn't ready. You'll know when the time is right.......but be assured, that you're in our thoughts and prayers and you and your little angel have touched our hearts in ways you couldn't ever imagine. You and Gavin have been such a blessing to people and have enriched our lives just hearing about his precious life. He was always an angel and now he has his wings to prove it. No more suffering, no more pain. He has his healing Kate. My best to you and your family today and always. Opal

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  11. Kate, I think I speak for many when I say we are grateful to hear what you need from us to best help you. Please, keep letting us know.

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  12. I've been reading your post ever since Gavin was in the hospital and I can never keep a dry eye. Thank you for sharing your thoughts about your precous little boy with us.It means a lot.

    Please take care of yourself now. You have gone through so much pain in a short period of time. Gavin would want that for you. :)

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  13. I know it's already been written, but, beautifully said =)

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  14. Your grace is amazing, Kate, and I pray that God will fill you as full of strength and comfort as He has with grace. Praying for the person (or people) that asked too - that they might have their needs met as well.

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  15. Love and hugs to you today, Beautiful Kate!

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  16. Take time!!! Don't do anything too soon. I am praying for the people that are already asking you for things, obviously they have not been through what you have, I have and I know it all takes time. Take care of yourself, Ed and Brian. I've been following Gavin since the early days of Caringbridge, he has touched so many lives.

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  17. I read your pages as often as possible, I am a special needs county bus driver everyday I share my life with children who need my help, (if only to get to and from school) but sometimes more. They tell me all about their little lifes, school, kids and home. I am touched by your words and your ability to share all that you have with perfect strangers. My heart goes out to you for the love you have for your children.I am deeply sorry for your loss. I feel I am blessed everyday by kids with special needs and yes they are truely special. I look beyond their special needs to those little personalities, the sweet smiles and on and on. Thank you for sharing your family with everyone, your life has been touched beyond measure in a way only you and your family understand, but still I wish you peace and happiness. I pray you see signs of little Gavin everyday in something you see, hear or touch. I pray GOD gives you peace and many more blessings for you and your family.

    Mary Ellen Camp
    Bus Manager
    Gwinnett County Schools/Special Needs.

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  18. Grieve at your own pace Kate. I pray for you, Ed and Brian every day.

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  19. Hugs and prayers for your family.

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  20. Praying, praying for you during this time. I wish I could do more. Take all the time you need, one day you will be ready again to take on the world. But you have spent the last 5 1/2 years making life easier for and caring for others. Now it's time to take special care of yourself. I wish there was something I could do for you. If I ever knew anyone needing a spa day(a spa YEAR!), it's you. I would send you a gift certificate if I could! xo

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  21. You are amazing. What a tactful and compassionate post.

    Could you please update us on Miles? Or does he have a caringbridge site ( or something comparable).

    Thanks.

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  22. I just came across your blog via "An Inch of Gray". I too just lost my very "special" girl suddenly 5 months ago at the age of 6.5 yrs, she was my everything(and her identical twin sister's). I feel like I lost who I am, and what I thought I was instantly. This grief is just so different for us and I totally get it. Do what you need to do and never feel guilty. I found an article on the grieving the death of a special needs child that really sums it up. Losing a child is the worst, but losing a special child is just different in a way only we could understand. Here is the link if you are interested reading http://www.examiner.com/article/death-of-a-special-needs-child

    Take care of yourself!

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  23. Dang, just when I thought you couldn't get any wiser, here you are. You are one smart cookie, Kate Leong. Proud of you for taking care of yourself right here.

    xoxo, Jen Semple

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  24. Thanks so much for letting us know what you need as you figure it out!

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  25. "you can't hold anyone accountable for things they don't know." Well said. Need to hear that more often!
    Continued prayers of comfort and peace for your family. Found your blog via Glennon- as a (hopeful) future special ed teacher, and cousin of a beautiful girl with CP and mental delays, your writing touches my heart! Thank you for gracefully and eloquently giving Gavin a voice through your words!

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  26. You are amazing! So proud of you for taking care of yourself first! I hope it is ok to be proud of someone I do not know! Do what YOU need to do for you Ed and Brian.. no judgement or guilt!

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  27. I can't help but judge someone asking you for Gavin's "things", I know you said we shouldn't but I just can't help myself.... you CAN hold people accountable when it comes to common sense.

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  28. You're amazing. Still praying and thinking of you guys ALWAYS.

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  29. Kate, I stumbled upon your blog a few weeks ago. You are in my thoughts so many times throughout the day. I have added you to my prayer journal and will pray for you every night. God bless you.

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  30. You and your family have been in our daily prayers. May God continue to hold you all in his hand at this time.
    You amaze me.

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  31. That was a very beautiful, well-written letter. :-)

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  32. Just keep telling people what you need...no matter how big or small! God bless!

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  33. May God in His wisdom, continue to bless you with the eloquence, grace and inner-beauty that you have. You write so openly and honestly, you speak with compassion, love, understanding and tolerance. I cannot fathom how you do it, despite your current loss. I pray for your comfort, in some small measure. May you, Ed and Brian feel the love coming to you from so, so many around the world.

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  34. I am so sorry you lost your beautiful Gavin. I know how difficult it is to lose someone AND to lose your daily routine and your identity that is so wrapped up in taking care of and loving them. You are always in my thoughts and prayers! I am so glad you share so much with us. You put into words what I am feeling, but can't express.

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  35. Despite all the followers on your blog and all the messages you get - I still want to re-emphasise - the value you add to complete strangers lives is HUGE! Thank you! Just by sharing you touch lives!

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  36. Kate there is a blog by a woman named Ashley Sullenger, whose baby girl, Preslee, died in an accidental drowning. I remember a blog post in which she wrote about giving things away too quickly, and his she wished she had some of these links to her precious child back. Do not add guilt to your grief. Keep what you need, as long as you need. You've had to let go of too much already.

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    1. I totally follow Ashley's blog too. Here is the link:
      http://www.sullengers.com/2013/03/parting-with-possessions.html

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  37. Great post. Thoughtful and respectful. Amazing to see you taking such gentle care of yourself. Good job Mommy. Love to you and your family. God bless you.

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  38. Sending prayers and Angel hugs to you and yours, on earth and in heaven. There are truly no words, other than to say thank you for sharing your precious superhero with us, he is truly a superhero to so very many. Gavin and Darcy Claire, your precious Angels- the warm overflowing loving feeling in your heart and your soul that shall be always and forever. Bless you. You are truly a beautiful soul.

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