Monday, July 11, 2011

Community, Life, and {Giveaway} Monday in Honor of Max

Just another weekend around here.  Dinner with friends, church, the pool, planning the celebration of Ellie's baptism, taking a walk and taking turns with our long runs.

(Working on head control.)

(From our walk.)































(FYI, if you and your spouse are training for the same marathon and have a baby, we recommend switching who gets the first long run each Saturday.  I got the second run this week... toasty!)

(Cooling off - the pool flattened the mohawk!)

(Look in Matt's glasses, can you see me?)































I love spending time with my family, and since June 16, I've been holding Ellie a little tighter.

(Photo by Matt, thanks babe!)
















During my pregnancy, I found support online from other women carrying children with Down syndrome.  Knowing we were not alone in our questions, fears, hopes, and dreams helped me immensely.  Ladies, I know many of you are readers - thank you for your love and encouragement.

(Sleepy little Ellie.)
















We now have lots of pen pals all over the country, with whom Ellie and I can share her latest victories and struggles.  As the mommies of little ones with Down syndrome, we've emailed, asked questions, shared photos, and compared NICU stays. I thought about trying to describe this community, and while I was pondering the description, I came across this blog.  I won't bother trying to assign words to what another mom already described so well.

(Just me, because most other DS mommies live too far away to hang out.)
















Although for the most part our sadness has been overshadowed by the day-to-day routine of loving these little chromosomally enhanced kids, we still cry together, too.

On June 1, Edie's son Max was born eight weeks early.  He passed away on June 16, and his short life he impacted the Down syndrome community deeply.  He fought hard and brought joy to his family.  We celebrated with his mommy when his health showed improvements, and we mourn with her now.

For babies with Down syndrome and complicating health issues, birth is a victory.

This week, we're honoring Max. Our giveaway this week comes from Sweet Little Chickadee, who will be donating 10 percent of July 2011 sales to the National Down Syndrome Society in memory of Max.



(Samples from Sweet Little Chickadee.)
























One random commenter will be given a $20 gift certificate. (And we'll pass all words of encouragement along to Max's family!)

For extra entries, "favorite" Sweet Little Chickadee on Etsy, follow Ellie on Facebook, and follow Sweet Little Chickadee on Facebook.  Leave a comment for each way you enter.  A winner will be selected by random.org on Sunday night, to be announced next Monday.

Make sure you check out Juli's blog from previews of her cute goods!

(Aren't these cute?)

















Check out the sidebar for a coupon code to the shop, too!

Sweet Max, your family and friends love you. We wish we could do more for your parents and siblings.

Oh, I almost forgot!  The winner from last week is:

Comment #8, Life With Kaishon: "Awwwwwwwwwwwwwwwwww. She is so cute. I should say that 4 times in honor of the number 4 sponsoring this post : ) I am too tired though."

Email me and we'll get your bracelet to you from The Awareness Shop!  (And everyone else, check out the coupon code still in the sidebar.  And check out Life with Kaishon, too, for beautiful photos and great writing.)

Enjoy your week, and please say a prayer for Edie and the rest of Max's family as they adjust to life without their little man.
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13 comments:

  1. I would be honored to win this giveaway in honor of Max. My thoughts and prayers go out to his family.

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  2. I had also written a post after Max passed, my blog is www.teamdavid.blogspot.com it is right before the vacation pics post. I think it is amazing that he touched so many of us.

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  3. Thank you for blogging about our precious son, Max. He was beautiful, treasured, cherished, and oh so loved. We miss you, baby boy.

    Neil and Edie (Max's parents)
    http://www.carepages.com/carepages/maxkolbe

    ReplyDelete
  4. So sad to hear about little Max.

    I love Meriah's blog. :-)

    And you don't live too far to hang out with other Ds mommies!! I was in your neck of the woods just yesterday!

    ReplyDelete
  5. Tiffany sacredheartfamily@gmail.comMonday, July 11, 2011 5:10:00 PM

    Sixteen days isn't many. It was surely too few for Edie, Neil and Max's siblings. But it was enough to touch many lives. We are better people because of Max's life and the example his family has set. Max gave us a chance to see the blessings that all children are and to grow as parents - especially when we mother children that are "special needs". Tiff (striving to honor Max's memory by growing in patience, love, and appreciation of her brood)

    ReplyDelete
  6. Little Max touched so many lives in such a short time. His prenatal issues were very similar to what I had with Cate - so his struggles really hit me hard. I cannot imagine my life without my Catie-bug.

    And yet when we got her dx I was devastated & scared & felt so alone. Until I found the DS pregnancy board. What a wonderful group of women...they helped me so immensely that it is hard to put into words.

    Shannon

    P.S. Ellie is a doll...love your pics!

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  7. My heartfelt condolences go to Max's family.

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  8. Max touched so many lives in such a short time. My thoughts and prayers go out to his family.

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  9. love the ellie post. blessings on little max's family. loving the sweet little chickadee shop - too cute!

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  10. Dear Neil and Edie,
    I am Ellie's grandma and have just finished reading of your dear Max's life on your carepage. My tears are flowing and my heart and prayers go out to you and your precious family.

    ReplyDelete
  11. I wanted to comment before but I always get so overcome with sadness over the passing of Max. It's heartbreaking.
    Thank you though, for writing of it.

    ReplyDelete
  12. the story of max always brings tears to my eyes! Beautiful post!

    So, I'm up and heading out for 7 before for the heat/sun comes! Hope you cool off from your long run!

    ReplyDelete

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