Bean-bag Babies

For some reason this phrase keeps popping into my head. 

I have a book on my shelf in queue to read that tells of a woman's lifelong mission to help 'bean-bag babies' to do things never expected of them. If you haven't yet figured out what bean-bag babies are; they're babies destined to spend their little lives propped up in a bean-bag chair, or in blankets, or on a lap. Bean-bag babies are not expected to do much. It's often thought that they can only sense comfort, pain, and the very basics of existence.  They will not walk. Will not talk. Will not feed themselves. Will need to be diapered for the duration of their lives.

I think I keep thinking about this because I have a bean-bag baby. 

Our Neurologist called on Friday of last week as I was leaving work and told me that my genetic testing came back positive, which means I'm a carrier for the mutation that caused Rowan's condition. That was a surprisingly difficult thing to write.

We all knew I was a carrier- and after three tests it was confirmed. Anyway, while I was on the phone with Dr., I was explaining to her the new milestones Rowan's achieved or is working toward. 

1. He can roll both ways
2. He has been babbling with consonants
3. He has been working SO hard at sitting and propping himself up
4. He gives kisses- and will do so when prompted
5. He holds his head so well
6. He reaches out for toys
7. He can hold things for many seconds
8. He can prop himself up on his forearms
9. He seems to understand cause and effect as it relates to hitting an object and it making noise

When I really take a look at this list- not from my home where I'm so damn proud of my kid- but from a sterile environment, these reflect the milestones of a 3-8 month old baby. Rowan will be 2 in 13 days.  He's developing at around 25%.

And you wanna know what? Our neurologist is amazed. She is shocked at these achievements and told me that this is more than she's ever seen any male with DCX-X linked Lissencephaly accomplish.

So sad- and so good at the same time.  So, our dear boy is a bean-bag baby, but we're damned determined he will not spend his life in one.