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Monday, November 12, 2012

Our Visitors

Sometimes just the simplest things connect mothers. You both have three sons, you both have new babies, you both stay home, your kids all go to the same school....and therefore you feel very bonded to this other mom.

When you connect with another mother whose child also has Harlequin, you don't just feel like you have a new friend...you feel like family.

DeDe sent me a Facebook message soon after Brenna was born. I was inundated with messages at that time and overwhelmed with all of the circumstances surrounding Brenna's skin condition that it took me a few weeks to connect with her. I learned, though, that although her son was 19 months old with Harlequin, we were the first ichthyosis family she had ever contacted.

That short Facebook message turned into lengthy emails, which turned to phone calls and frequent text messages. I've written before that our education and skin care routine is thanks largely to DeDe and her husband, who have very willingly shared encouragement and advice throughout this first year with Brenna.

Then, a few months ago, DeDe texted me and said "we want to come visit." Without hesitation, we said "PLEASE COME!!" The weeks flew, and finally.... it was time to meet the family that has given us so much hope during our tumultuous journey.

On Friday, DeDe, her mom Diane and her beautiful son Evan, who is now almost 2.5, flew into St. Louis from their home in Connecticut and drove to Springfield to meet us. We spent two incredible days together, and while I felt such a connection before now to her, I feel like we are now good friends for life, as well as our children.

I could hardly believe the connection that our families felt and the bond that we formed during their time here. Brenna and Evan were enamored with each other and played together like they see each other every day...

Checking each other out the first day...


It's a little blurry, but those expressions are precious!

We showed our trio of visitors what Springfield has to offer with a dinner out for horseshoes at Dublin Pub the first night they were here on Friday, and lunch downtown at Cafe Moxo and a trip to the Abraham Lincoln Presidential Museum on Saturday! 

And both nights, DeDe's mom Diane was gracious enough to stay with little Evan at the hotel to give us a chance to talk and share stories. DeDe was very interested in seeing photos of Brenna from her birth, as she had an emergency c-section with Evan, who was given a preliminary diagnosis of Harlequin even before he was born due to a sonogram that showed clenched hands and no nose in his profile (his nostrils were completely blocked by skin).

We also watched each other's bath and skin care routines, which was very enlightening to us, and compared Brenna's and Evan's skin, nails and hair.

I was even able to get my camera on Evan and DeDe for some beautiful portaits...


Their visit came at the perfect time, as I've been feeling a little burned out. She probably doesn't know it, but through her visit and connecting in person, DeDe has given me a new strength and zest for my role as a mother, for providing the best care possible for my children. Brenna's continuous skin care can feel burdensome at times, but DeDe has shown me a hope for the future through her excellent care for Evan and how well Evan is doing now.

It's a daily battle, but it will get easier over time. And I know that I'm not alone in my feelings and my frustrations and my daily challenges.

I have a new friend, who will always be able to relate and to share these daily burdens and celebrations with me as a mother.
I can't thank this wonderful family enough for taking the time to come visit us! We can't wait to see you again someday...in the meantime, we will be rooting for these beautiful kiddos as they grow and thrive and show the world what they can do :)

19 comments:

  1. What a wonderful journal entry! There is nothing like knowing someone who truly knows what you are going through! I'm so happy you've made this connection!
    Susan Matusiak
    Carefree, AZ

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  2. LOVE it! So glad for you all that you found each other...

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  3. Lovely story and pictures Courtney. I met DeDe in New York and I too have found a friend for life.

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  4. This is such a touching story. The blogosphere is a wonderful way to connect to people who can relate. They both look adorable in the photos.

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  5. Awesome. Beautiful. Inspiring. Thanks for sharing!!

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  6. so heartwarming :-)
    (Martina)

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  7. So happy to read about this incredible visit....for both families! It's interesting how God puts just the right person in our path at just the right time!!

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  8. Sounds like DeDe knew just what you needed. So glad that you can be each others encouragers, even across the country. Your babies are precious. I say a little prayer for Brenna with each update on your blog I receive, and for her family who takes such good care of their little bundle. God bless you!

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  9. The pictures are so loving. I'm happy that the two families were able to meet. Thank you for sharing your story.
    (Julie, IL)

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  10. What a GREAT weekend!! Does little Evan have a blog also?? but more importantly...your friendships:)
    Pete and Judy Olesen

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  11. This blog is now OVERFLOWING with cuteness! Evan is a little charmer - he has stolen my heart! So happy for you guys for finding each other.

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  12. jUST WANT TO SAY I THINK YOU AND YOUR NEW FRIEND ARE TRULY BLESSED AND I AM GLAD THAT YOU FOUND EACH OTHER. JUST KEEP GOD IN YOUR HEARTS AND HE WILL TAKE CARE OF ALL OF YOU. YOUR BABIES ARE BEAUTIFUL JUST LIKE THERE MOMMIES.

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  13. Really nice write up. I'm a friend of DeDe and Joe and they work extremely hard at keeping Evan healthy and happy. So happy you finally got to meet and hopefully Even and Brenna can be life long friends!

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  14. This story is just unbelievable it is so inspirational. God bless you all, so much. God sure does get us all connected (if we let him ;), doesn't he? Thank you so much for sharing, Courtney and DeDe. God bless you all. And how cool that little Evan has the same name as daddy Evan!

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  15. You are an inspiration to us all!

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  16. Your daughter Brenna is a beautiful gift from God. I know the Fasciano family so I've had the blessing to be connected with Evan here and there and he has stolen my heart. I love him like he was my family and will do anything for this little guy. Love his infectious smile and the way he grunts when he acts like a Pirate. So precious! May God continue to bring awareness of this condition to more people so that we can get funding to find a cure. Blessings to your Brenna and your family.

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  17. I just read Evans amazing story and found this link from that, I am actually so HAPPY for both of you and your beautiful beautiful children and all I can do is wish you the most amazing future. This has really touched me and I think it's great that you have found each other and your babies can be friends forever :) amazing to read thank you for sharing your stories xx

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  18. Brenna is so beautiful inside and out I am a new reader to your blog and i fell in love with her the moment I saw her! She is teaching me that outside beauty isn't as important as inside beauty and she is so adorable!

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