Grateful pretty much sums up how I’m feeling. Grateful for the abundance of support we’ve had from friends, family and even strangers. Grateful for the news we got at Miles’s recent appointment at Duke.
Jamie and I became more and more emotional and anxious as the appointment approached. Each time a friend or family member told us they’d be thinking of us and Miles my heart would swell a bit. Knowing that others were supporting us and rooting for our little Miles made me feel very lucky.
We decided to attend church the other weekend because we’re having Miles baptised there soon and since we’ve been to church all of one time since Christmas we thought it would be a good idea to get reacquainted with the place. Normally (when I say normally I mean the handful of times we’ve gone to church) I sit quietly in the back with Jamie after dropping Elly off in the nursery, listening, singing and trying to relate what the pastor is saying to bettering myself somehow. Each Sunday the pastor invites people to share good news and to share prayer requests. Jamie surprised me by standing up and telling everyone a bit about what we were going through with Miles, who was resting his head on my shoulder sound asleep, and that we were heading to Duke to find out more about his condition the next day. I whispered to Jamie that we needed to get out of there right after the service because I knew I wouldn’t be able to hold it together if people were coming up to us offering their support. Well, we didn’t have a chance to escape the kindness, it was like a warm knit blanket coming towards us and there was no way we weren’t going to get wrapped up in it. These people don’t even know us, yet they were taking the time to talk to us, hug us, love on Miles, and pray for our family. Wow.
Here’s Miles wrapped up in the prayer shawl that was hand knit by a member of the church and given to us on Sunday. We used it as his blanket on his appointment day.
At Duke we were given the news that Miles has benign external hydrocephalus which typically resolves on its own by the time a child is 2 or 3. We saw his brain scan and the doctor showed us where Miles has excess fluid. He has treated thousands with the same condition and said he was 99.9 percent sure that Miles will be perfectly fine without needing any treatment. By the way, I think that doctor is the smartest person I’ve ever talked to, I mean, he operates on tiny brains AND answered all the questions on my list before I could even ask them. We will be taking Miles to our pediatrician each month to get that noggin measured and to continue watching his development to make sure he’s on track, but all is expected to be fine!! We are over the moon! We received good news, but I can’t help but think about all those other kids and parents we saw who were also at Duke waiting to see the pediatric neurologist. I’m sure many miraculous things happen at that children’s hospital but it’s still a sad place to be.
At dinner that night I said I wished we had been able to get the appointment at Duke sooner so we weren’t spending the past month wondering what we were dealing with but then I thought about all that we’ve learned during that time. I learned to try hard to live in the moment and not waste my days worrying about what might be. I learned that Google is not my friend. I learned to be so thankful and appreciative each day that my kids are healthy and happy. I have a lot to be grateful for.