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.

Dear Lily

Dear Lily-

You're in the bathtub and I'm sitting on the toilet typing.  We had a lovely weekend with Grandma and Grandpa Hammer and you were such a great kid. You're so grown-up. It surprises me sometimes just how much you know and how much you can do. I love your personality and your spunky little spirit. I relate to you and feel such a connection to you when you get mad, frustrated, sad, embarrassed.... How you act and react during those times seems exactly how I'd like to. You can verbalize your frustrations in ways I can't (because screaming and hitting isn't acceptable when you're an adult) and I just love you for your authenticity. I doubt this makes sense- I'm trying to say-quite un-elequently that- I love you just how you are and that I think we have very similar personalities. Your daddy sees it, too, and seems to know what he's in for.

You've taken to being scared of pretty much everything lately. It started with a plastic ghost around Halloween and has spread to owls, snowmen, our bedroom lamps and our guitar.  We had to take down all of the owl decals on your walls and throw them away. You'll no longer drink out of a cup that has an owl on it. We usually sleep together on Friday nights, but you won't even go into our room any longer because you swear there are scary dogs on our lamps. The guitar, though... we haven't figured that one out yet.

I want you to know how much I love you. I have been thinking a lot lately about whether we add pressure to you because of your brother's condition.  I wonder if we push you more. You're a bright kid and we want to give you all opportunities to be an empathetic, smart, cultured kid... I just want to make sure we're not trying to compensate for Rowan's Lissencephaly and inability to do certain things by encouraging you to take on more?? I'm sure I'm over-thinking this, but I want to make sure we always remember that you're you independent of him and that we don't think of you as the one with abilities, the one who will go to school, the one who will be in sports. You're an amazing kid and, again, I love you just as you are.

Love, Mommy

Music to my ears

That is all.

Dear Rowan

Dear Rowan,
I've been thinking back to this post and to how I felt a year ago.  It was like you were with us one day, and the next you weren't. Seizures had taken over your little brain and what was there working basically failed. Your strength was tapped, appetite done, and eye contact gone.  For me, that was the most difficult aspect of you being sick. I missed connecting with you so much. It wrecked me that I couldn't engage with you one of the most intimate ways. I truly thought I'd lost that forever.

There have been countless times in the past couple of weeks that I've been moved to tears, Rowan. I lay on the floor next to you and we talk back and forth- and you look at me. You look right into my eyes and you engage and participate and act silly and wrestle. You look into my eyes and smile the sweetest, kindest smile- almost like you're telling me everything is alright.

Connecting with you is something I hope to never take for granted. I don't know how long we'll have you in our lives, and I don't know what the next year will bring for any of us- but as long as we have each other, we'll be ok.

I am certain you know you're loved. And I certainly know I am by you. Thank you for that, my dear.

A peaceful weekend

We had such a nice weekend with the kids- both were, for the most part, delightful to be around.

We've declared Saturday to be 'Sweets Day' and Sunday to be 'Fun Day' at home. The sweets-baking isn't helping my waistline, but it is sure a fun thing to do with Lily.  I think we've all tried to focus more on having a good time together than on trying to cram as much cleaning and tasking as possible into one weekend.  Everyone is happier... and a little bit of dirt matters so little in the grand scheme of things.

Quote of the weekend from Lily: "When I pee will I see teeny marshmallows and chocolate pee?" said after drinking a cup of hot cocoa.  Don't worry, all- I cleared up her confusion:)

Rowan had a strong weekend. He was very vocal and practiced looking at lots of different things.  As I mentioned before, I'm super focused on helping his vision to improve. I've been reading the book, Little Bear Sees and have recently ordered items from Amazon; strings of yellow and pink lights, red mylar wrapping paper, a two-sided mirror.  I want to make sure everything he does is stimulating his vision and that we're focusing on bettering one of the abilities he DOES have. He may not walk. He may never say a word.  But he can see...

On that note, we're moving forward on having a Vagal Nerve Stimulator implanted in Rowan.  I received a form to sign and to fax back to get the actual device ordered.
These forms always take my breath away. No matter how many I receive. Ones like this remind me that, although Rowan is strong and had a good, fun weekend... He's still got a bad brain. He's still fragile and we do have a long road ahead.  I think both Steve and I are so good lately at loving our children deeply and in the moment- and at celebrating inchstones with Rowan, and I can only speak for myself, but sometimes I get so used to Rowan just being 'Rowan', I forget how serious things are. I am sure that sounds silly-because trust me, I remember he is sick.  The day-to-day and the fact that I HAVE to be accustomed to his condition, though, makes me forget things like this: 

a new bed for Lily

Better late than never on this one, I guess?

A couple months ago, I made this bed for sweet little Lily. This wasn't exactly prompted by the kindness of my heart and a desire to sweat in the heat of August at my favorite wood studio... rather it was an idea that popped into my head after about 6 strait months of her getting up in the middle of the night and coming to wake me up.  And even then, I was inches from buying a loft bed online.  Steve saved the day, though, and told me to simmer down, not click buy, and go to sleep. Then next day I had the idea to make her a bed.

All told, the frame of this bed cost us $80.  I worked for about 24 total hours on it. 

Lily loves it and no longer wakes us up, so I'd consider this one a success!!

 I found the plans at AnaWhite.com and Jim helped me build it for my girl.

Things and other stuff

I've been completely blown away by my kids the past couple of weeks.  Growth is all around; literally and figuratively.

Rowan is getting huge! He's seriously long, folks. If he could stand, Lily'd be in for it. Something's changing with this kid. His focus is ten times what it was a few months back, he is verbalizing really well and is doing a ton of mimicking. He is interacting with us consistently and is doing little things to show us he's almost reached the twos.  I don't know why I'm shocked by his recent growth and development, but I am. It makes me wonder what the future holds. Makes me want to do more and more for him.

And Lily! She is really something. She's learning things every day at her new school and her verbal skills are amazing. She seems to have grown up in the past few weeks. I kind of don't like it, and I don't think Steve does, either. I miss my little girl!  We can't stop her, though. For some reason her growing up scares me slightly... in the nicest way. I want her to slow down. I want her to stay where I can protect her.

Sheesh... I hope she wants to be my best friend and snuggle me until she is 20. or 30.

Here she is napping with Grandma this past weekend. Both were exhausted...