A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Sunday, November 11, 2012

One year ago...

...I lost my son, my baby, my boy.


My husband wrote these beautiful words on his Facebook page last month:

It has been 11 months today that my youngest sons heart stopped beating in my hands never to beat again and never to be held by me in the living form that we all know but i am still proud of him as i am his brothers he is my inspiration every day for the fight that he put up every day to try to stay here with his mom,dad and brothers he taught me more in his short life then i had learned in all the days i have been around he taught me to love unconditional and to look for the best in people and help where you can even if it isn't much you can do at least you gave it a try and to not forget that there are people out there that have it worse then us so all ways look up to the skies,smile and laugh when you can and to show love to others like you would like them to show to you well have a good day world and don't forget to smile because i know my Daniel man would

I found this photo from The Compassionate Friends Facebook feed:

7 comments:

  1. Thinking of you and your family today and every day. God bless and keep you always. All my love, Christy -Amy's mom

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  2. Daniel is with us always and we will have his pictures and memories of his beautiful blue eyes and big smile.

    We love you.

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  3. I have been thinking about you both for a few days now and hoping this day won't be too hard on you! You are doing great things for other families affected by this disease and those of the future. With your help, it will be easier for families to get a correct dx without waiting for years, as you did. With your pushes for awareness and research, kids who are dx'd with NP will have longer and better lives and more time with their families. And, we pray, someday a cure! Love you guys and appreciate what you do for everyone else!
    ((((HUGS)))) for you and Faron!

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  4. Was thinking of you all weekend, Jill. Despite your pain, you continue to perservere. Sending hugs and good thoughts for continued healing for all of you.

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  5. I thought a long time about what to say to you about this day, but I realized I just don't know. I'm not very good with words when I can't make it better. So I just thought instead I'd tell you that you've educated at least one person about this disease that I'd never before heard of, and I'm very grateful to you for that.

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  6. Thank you all for your comforting words. I am glad to be able to spread awareness and educate others.

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  7. It's so hard a thought to bear for parents... I think we turn away from anything that makes us consider our own children's mortality. When they do turn, know their hearts are full for you and your loss. It's simply too scary to face for some. For me! Bless your family. Huge hugs to you. My heart and eyes are pouring over.

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