Flashback Friday AND Craniofacial Awareness

The moment you first meet your baby, face to face. Those first few snuggles, and kisses. Trying to soak in every detail of this sweet little person. He's perfect!! He's beautiful!!That's how I felt right after seeing Benjamin for the first time. Had there ever been such an amazing baby?! How blessed we were!
Then the screaming started. He was about 3 weeks old, and had just finished a hospital stay for viral meningitis. No matter what we tried, no matter how much he ate, no matter how many times I took him to the doctor, he kept on crying. My mommy intuition told me something was wrong. I would hold him, pray over him, and cry, knowing something was wrong but not knowing what.

When he was about five months old, we finally started putting some of the pieces together. Maybe all this crying was due to his oddly shaped head. A doctor at our pediatrician's office told us that perhaps Benjamin had craniosynostosis.
We learned that his oddly shaped head was caused by the premature fusing of one of his soft spots. Only six days after his official diagnosis, he had surgery.
A month after surgery, Benjamin went into a helmet to protect and reshape his head. He spent 6 months in this helmet, and our family spend a lot of time in the car going to and from Austin every two weeks to have the helmet adjusted. Looking at Benjamin today, you would never know that this lively three year old once had a rare birth defect, causing a rare head deformity. We are thankful for the care of the doctors and the orthotist who cared for him. We're even more thankful for grace that God showed us and Benjamin during this time.

Recently, I read an article about parenting children with special needs. It likened the journey of parents with special needs kids to a journey to Italy. You get on a plane, prepare to head to Italy, learn Italian, and buy books about the cities you'll be visiting. When you get off the plane, you realize that without warning you are in Holland. It's a nice place, but it's not what you were prepared for. You are suddenly learning a new language, and rapidly trying to adjust to your new culture. The article was written for parents who had children with long term special needs. And while I am SO thankful that I'm not a parent who is in Holland forever, I can completely relate to some of the author's points.

As a momma, I was so in love with Benjamin, even before he was born. The moment I saw him, I knew I would do anything for him. He was beautiful. Then I was told that no, my son was deformed. His deformity would only become more and more pronounced the older he got. His brain was being squashed, and we could face some very severe medical problems because of it. I had been in Italy. Then suddenly, I was on a plane, having just landed in Holland. Rapidly, I had to learn a new medical language, I had to prepare myself for my son's major skull surgery, and a PICU stay (which was hell). And one of the hardest things was that while I found myself in Holland, my other children were still in Italy.

Little research has been done on how or why children are born with craniosynostosis. We've recently learned that Benjamin might have had this birth defect because of some medication that I took during my pregnancy with him, but we're not sure. And we may never know. I do know that everything we went through, and everything that Benjamin went through was for a purpose. I hope that while we were on our journey, we glorified God, and showed His love and the hope we have in Him to others.

Parents who face having a child with a craniofacial issue face some hard stuff! Which is why I want to take some time talking about it this month. There was an emotional drain on us, it took a toll on our marriage, our family suffered, it was a financial burden that was are still trying to recover from. But how very thankful I am that all is well!! And that's what really matters.