This past weekend we were grateful for the opportunity to visit a family that has a little girl with Apert Syndrome. She shares alot of similarities with us. Her mommy also found out prenatally that Sarah would have Apert's. She also delivered Sarah at Wake Forest, where Cameron was born. Unlike Cameron, Sarah only ended up spending about 2 weeks in the hospital, and is now home with her awesome Mommy and daddy.
The first time I spoke with Erica(Sarah's mommy)I was taken back to when I was pregnant with Cam. All the unknowns, and the anxiousness that I felt daily was felt in her voice. But she amazed me because she was very excited about Sarah's arrival. She had taken the smart route and instead of spending every waking moment during her pregnancy researching Apert, she decided that she would just wait until Sarah arrived and just deal with it then. I wish I could have been that dedicated when I was pregnant, it would have probably caused me a little less worry. When you look online you are subjected to the good and the bad, and even though Apert Syndrome isn't typically deemed a life sentence, there are some scary things out there, and when you are exposed to the bad, sometimes it's hard to wrap your mind around the fact that that probably won't be you. So for me it was a daily struggle wondering if Cam would be one of the worst case scenarios. But Erica, she just gave it to God and welcomed Sarah, with what her needs were, and has done that ever since. She is an amazing mommy to that little girl!
We spent several hours eating dinner and just hanging out with this great family. They have two older children who are absolutely wonderful. Sarah was there little unplanned blessing! We talked about what we've been through, and some things they have to look forward to and can expect when having a child with this complex syndrome. We also talked about our backgrounds and had an amazing dinner, something I can't wait to try for myself to fix. Seafood Eutofee....had never even heard of it before but Paul, Sarah's daddy, prepared that for us for dinner and it was AMAZING!
Holding baby Sarah was such a flashback for me to when Cameron was a tiny baby. She is still very little and I look at Cam and it's crazy to see how big he is compared to her, and knowing that not too long ago he was that small. I have a new outlook on babies. I loved holding baby Sarah, knowing that there was another real life baby out there that had what Cameron did. Even though we have met another person with Apert, it was different because the other girl was an adult, and sweet Sarah is baby, something I've been exposed to. So it was great being able to touch and feel that similarity. I loved her! She is beautiful and I'm so glad they live so close, so that we do have that connection to another family going through what we are going through. It's also great to provide advice and support. I definitely have a lot to learn, and Cam still has his hand and feet surgeries to go, but he is 8 months and so what he has already been through I'm able to share with them, and that makes me feel good. To know that Cameron is helping me to help others who are just now taking this journey!
Like I've said before, we are so grateful that this family is opening their lives to us. It's been precious for us to have another family that we can be close to that knows our hearts. They feel the sadness of watching their daughter go through multiple surgeries. They also revel in the joys of all the progress she makes along the way. I look forward to the times that Cameron and Sarah can play together and know that they share something special. We had a wonderful time at our visit and can't wait to do it again!
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