Meeting History…sweet and sassy and dressed in plaid

Meeting History…sweet and sassy and dressed in plaid

I don’t even remember how or when I first connected with Stephanie after Brenna was born. But the more I saw online, the more I was fascinated. She was hunting and boating and had a serious boyfriend…things I couldn’t yet even imagine when Brenna was just born, but it gave me so much hope for the future.
When I realized that Stephanie lived in Arkansas and that we vacation near Arkansas, we made it a goal to meet her. Then after she had her beautiful baby – the first woman with Harlequin ever to be pregnant and give birth! – we knew we definitely had to make a trip to see her family.
So after months of talking about it, on the last day of our vacation last week (was supposed to be the first day but then Evan and I got strep throat – ugh!), we loaded up and swung through practically the entire state of Arkansas and arrived at their front door close to lunch time.
We were greeted by Stephanie and her mom, and I don’t know if it’s because of the fact that sharing the experience of such a rare disease brings you closer, but I feel like we could have talked for days with them. And the bond that Stephanie and her mom have is indescribable – it was really special to witness that in person. I kept thinking that they are me and Brenna fast forwarded about 18 years 🙂
And Stephanie’s baby Willie is absolutely PERFECT! I couldn’t believe how big he is! Brenna, in the midst of her baby-obsession stage, was a big fan. I think someone has a crush…

We were disappointed that Stephanie’s mom had to go back to work after her lunch hour off with us, but we were so excited to learn that Stephanie’s husband Curt had taken a half day to come meet us. Meeting Curt was the complete icing on our already well-decorated cake that day. There was a noticeable change in Stephanie when he walked through the door – she relaxed and her bright smile grew even wider. They only met just a couple of years ago, and he does not – nor do I think he ever did – even notice her skin. He is everything I could hope for in a husband for Brenna. To sit down at lunch with them over pizza and listen to them tell us all about Stephanie’s labor and recovery, Curt’s recent job change and hear Evan and Curt swap hunting stories – the love and admiration in their little family is palpable and I felt blessed to be a part of it.

They are completely doting parents, and have both taken to their new roles as mother and father so well. I love seeing such obsession from new parents 🙂

Curt and Stephanie were both dying to get their hands on Brenna, but you know Brenna – stranger danger alert! She would even try to push herself from my lap into Stephanie’s lap, but as soon as Stephanie would hold out her hands and say “do you want to come to me?”, Brenna would retract and shake her head 🙂

She’s actually smiling and reaching for a toy, not for me. (for once!)

Brenna kinda has a thing for beards, as you can tell…

We stayed for over two hours, and even gave Brenna a quick bath while Stephanie and Curt played with Willie and Connor outside. I tried not to ask too many “medical” questions because I didn’t want our whole visit to be grilling Stephanie on how she takes care of her skin, but we had a nice balance of “real life” discussions and skin care questions. We also got to hear a lot from Stephanie’s mom about how critical her life was in the early days and years, and how things like therapies and even weight gain took a backstage to simply trying to keep her infection-free and alive.

Stephanie was able to articulate things for us that will be a long time before Brenna can – such as how it feels to get too hot, how long she is outside before she overheats (and that she tends to be on the cold side just like Brenna is), how it is uncomfortable for her to extend her fingers, that she doesn’t like the rough feeling of jeans on her skin so she wears thermals under them, and that when her skin is sore, she needs to take a nap and basically sleep it off.

To Stephanie and Curt, they are just themselves – two people who have fallen in love and started a family. They said they just leave everything to God, but to see their faith in action as it pertains to living with a severe skin condition and entering an unknown world by having a baby is just overwhelming.

Though it added 5 hours to our already 6-hour trip home, I would make that trip again any day for the chance to hang out with Stephanie and her family. She displays the same sweet but sassy disposition I see in Brenna every day – a huge heart with a bright smile and faith in God who doesn’t let anything stop her. I am so glad to have people like Stephanie to look to for guidance and hope for the future and to be role models for Brenna as she grows up…

14 thoughts on “Meeting History…sweet and sassy and dressed in plaid

  • July 16, 2013 at 12:31 pm
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    What a great post! I knew meeting Steph would give you an incredible amount of hope for Brenna.
    Like Steph, I hate jeans against my skin, get cold and do sleep off the pain too.
    Over the weekend I met two people with Ichthyosis. I am not well at the moment but will share it on the blog soon.
    So happy for you all 🙂

    • July 17, 2013 at 1:48 pm
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      I enjoy your blog! Feel better soon!

    • July 17, 2013 at 6:48 am
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      I enjoy your blog! Feel better soon!

  • July 16, 2013 at 5:31 am
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    What a great post! I knew meeting Steph would give you an incredible amount of hope for Brenna.
    Like Steph, I hate jeans against my skin, get cold and do sleep off the pain too.
    Over the weekend I met two people with Ichthyosis. I am not well at the moment but will share it on the blog soon.
    So happy for you all 🙂

  • July 16, 2013 at 1:13 pm
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    What a great and positive story… you have me in tears.

  • July 16, 2013 at 6:13 am
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    What a great and positive story… you have me in tears.

  • July 16, 2013 at 3:09 pm
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    What a great uplifting experience! Stephanie is Beautiful, and radiates happiness. I think YOU are just an ANGEL to share Brenna’s story. Beauty shines from the inside out. She is blessed to have you as her mom, as I know you are blessed to be her Mom.

  • July 16, 2013 at 8:09 am
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    What a great uplifting experience! Stephanie is Beautiful, and radiates happiness. I think YOU are just an ANGEL to share Brenna’s story. Beauty shines from the inside out. She is blessed to have you as her mom, as I know you are blessed to be her Mom.

  • July 16, 2013 at 5:56 pm
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    This is the first post that made me cry (obviously I am not one to cry). So happy to get to peek in Brenna’s future and see how bright it really is. Happy for you guys!
    Amy

  • July 16, 2013 at 10:56 am
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    This is the first post that made me cry (obviously I am not one to cry). So happy to get to peek in Brenna’s future and see how bright it really is. Happy for you guys!
    Amy

  • July 16, 2013 at 7:00 pm
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    I loved reading this post. It meant so much to me the first time I met an adult who had skin just like Caleb’s. I saw they were healthy and happy and it really helped me turn a corner and gave me so much peace about what his future holds. It is great reading about Stephanie and her becoming a mom. What an amazing story that it! Brenna’s future is limitless and full of so much beauty. So exciting to read this!

  • July 16, 2013 at 12:00 pm
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    I loved reading this post. It meant so much to me the first time I met an adult who had skin just like Caleb’s. I saw they were healthy and happy and it really helped me turn a corner and gave me so much peace about what his future holds. It is great reading about Stephanie and her becoming a mom. What an amazing story that it! Brenna’s future is limitless and full of so much beauty. So exciting to read this!

  • July 16, 2013 at 7:06 pm
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    This has to be one of my favorite blog posts ever! So very cool…

    Holly R.

  • July 16, 2013 at 12:06 pm
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    This has to be one of my favorite blog posts ever! So very cool…

    Holly R.

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