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.