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 🙂
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.
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…