#mytribe

10 Sep

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Lee & I made it home safe & sound this morning. Lots of prayers answered for that! We had such an amazing time but it was very stressful to see hurricane preparations going on at home (thanks Facebook & Weather Channel), having our flight cancelled, and being hundreds of miles away.

First, I am so thankful to Sophie Dykes for giving her spot on the trip to me since she could not go while Annabelle is in the hospital receiving chemo. Sophie worked SO hard to raise $2500+ for Down Syndrome Diagnosis Network – DSDN so that her trip would be paid for. The fact that I benefited from her hard work is not lost on me. I thought about her every minute. It was an experience I will never forget and cannot adequately thank her for. It was truly an honor to go in her place & all I could think was “I don’t deserve this!” Thank you, friend. I love you to the moon and back. Keep your head up. “You’ve got this & we’ve got you.” God has Annabelle, your family, & the doctors & nurses right in the palm of His hands. Help me repay her by stopping right now & praying for Annabelle, Sophie, Blake, Levi & their entire family. Annabelle is having a really hard time. πŸ™πŸ»πŸ’—πŸ’›πŸ’™

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We took Sophie with us πŸ˜‚

 

Most of you do not know about DSDN, how I know these women, & their significance in my life. I would like to offer a little background info.

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When your child is born with an unexpected diagnosis, you will search high & low for information and stories of families like yours, hoping to learn that your life will be ok, trying to figure out how to deal with the grief & uncertainty. Finding support is so important.

In Jan 2013, after Rosalie was born, I found a group of women on BabyCenter who also had new babies with Down syndrome. A decision was made to form a private group on Facebook because it was just more convenient for everyone. These women were my lifeline during Rosalie’s 2 week NICU stay, then hospital stays in that first year in Valdosta , Jacksonville, & Savannah for possible Hirschsprung’s disease, c diff, colonoscopy, IVIg, severe chronic neutropenia, hypogammaglobulanemia, and then our trek to Michigan to see the top Dr for SCN.

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I am so honored to be a part of this group – the original group of Rockin Moms. Β From our group, we now serve over 4,000 new moms. It’s humbling and so beautifully empowering. Love these girls – the original Rockin’ Moms. ❀️ (Stole your quote, Lauren…thank you)

That first year was probably the hardest year of my life. My “Rockin Mom” group was there for every triumph & every celebration. These women have written a book & started a nonprofit organization, Down Syndrome Diagnosis Network, which works to educate medical professionals about the RIGHT WAY to deliver a prenatal or birth diagnosis of Trisomy 21, Down syndrome, as well as offer support to mamas of rockin’ kids 3 yrs & under, mamas who are dealing with loss & extended hospital stays.

I was so fortunate to not have a bad experience like soooooo many other women in the world. Our doctors told us, “Congratulations! You have a perfect baby girl. Take her home & love her just like you did with her big sister.” Other women are just automatically scheduled for & encouraged to have an abortion because some doctors are completely uneducated and think that individuals with Down syndrome will be nothing but a burden on families & society. If you know Rosalie, you know that could not be further from the truth.

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So these women have been my tribe for almost 5 years now, and I finally got to meet their beautiful faces & hug their necks in person this weekend. These are the women who GET IT. They know what our life is like and are going through the same things my family goes through. No judgement, just support thru the good & bad.

Thank you to all who worked so hard to put on such an amazing weekend!! I am so very thankful for the opportunity to meet so many Rockin Moms!!

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I cannot end without thanking Rachel Coleman for the laughs and the tears and the inspiration to carry on. I totally “fan girled” this weekend.

“We may not find easy, but baby we found the the good.”

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It was so good to see Kristie, Gabe & Alex this weekend! She finally got to “meet” Sophie! πŸ˜‚

 

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