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...

One year.

Today is the 19th of September. Tomorrow will mark one year since we found out our Rowan was sick.

I'm feeling pretty quiet and have found myself thinking more than normal about things. Reflecting more, I guess. I miss my boy kind of. I've got him here and he is wonderful, but I kind of miss the idea of him being a running, playing, talking little boy. I don't think about that much, because I love him like we have the same heart and I don't want to feel anything but joy for him and his life. But I went there a bit tonight.

I was wondering what that tuesday was like. How did it even go? It's hard to remember. The doctor told us- but then what? I cried. And then I think I shook my head a lot and said 'no- this isn't right' or something similar.

Then I remember it being night time and I was alone in Rowan's room. I sat in one chair. Then another. And nurses would come in through the night to see if I was ok. One told me I should sleep. But I was scared to sleep. I didn't want to give in to my devastation. I just wanted to figure it out. I was scared to fall asleep.

Today I'm not scared to sleep. That is a gift. He is a gift.

For one little soul to change so many others is really something. He must be here to change us... To help us.

Thank you, dear Rowan.

Erin's (attempt at) Hobbies- Canning

Earlier this Summer we decided to join Bluebird Farms and have been thrilled each Tuesday when we get our fresh vegetables. The day I signed us up for Bluebird Farms, I developed a healthy obsession with canning.
Canning is great for me for a couple of reasons; 1. If you know me at all, you know I've got a thing about running out of food. I live in a constant state of fear of running low which has resulted in weekly Sam's club visits, an extra freezer in our kitchen and a closet full of overage. I did not grow up without food, so I'm not too sure where this 'thing' came from, but I've got it. My name is Erin and I'm a borderline food hoarder. 2. I love working with the ingredients and making food for my family that is healthy and that hasn't been doused in pesticides. 3. I really enjoy giving away things I've canned.

Here are a couple of things I made a few weeks back:

This is an amazing Blackberry Port Jam I've made twice now. Recipe (as my memory allows) is below.

 I began by boiling my jars to sterilize them.

Steve loves Apple Butter- so Apple Butter he got. I had to push it through a sieve. My arms were super sore.

This is a picture of the Apple Butter cooking. Has a much richer color after all of the Fall ingredients were added.

I made a Fall Blend of Apple Butter and used Maple Syrup, Cinnamon, Vanilla, Brown Sugar, Cloves, All Spice, and Maple Flavoring along with even more sugar.

I didn't need to add any pectin to this since I cooked the apples with peels and pressed everything through a sieve.

Finished Blackberry Port Jam

Finished Apple Butter.

Blackberry Port Jam:

5-6 Cups Whole Blackberries
1 Cup of a good, fruity Port
1 tsp. ground cloves
1 tsp. cinnamon
6 Cups sugar
Pectin


Cook Blackberries in pot until they turn bright red and get nice and soft. (about a half hour to 45 minutes). Mash them with a potato masher to get the juices out and to break them up a bit. Add in your sugar, port, cloves (to taste... I like a bit more than Steve does) and cinnamon and cook for about another hour to combine all of the flavors and to make sure things have reduced down nicely. Add in your pectin packet and stir until dissolved.

Pour into pint jars leaving about 1/2 inch below the top. Seal and place in a hot water bath canner for about 10 minutes. Remove and cool on a dry towel listening for the pops. All of my jars popped pretty quickly.

Steve and I have really enjoyed this jam on toast as well as with pork chops. Steve reduces some of it down with some rosemary and other things and it's just great with a pork chop and some roasted veggies.

Apple Butter:

1 5lb. Bag of green apples
1 container of sugar-free applesauce
Good quality maple syrup (I used about a cup or two)
Cinnamon
Vanilla
Sugar- about one cup for each cup of Apples
Nutmeg
Brown Sugar

I wish I had a good description of how I made this.  Really, I just used an apple butter recipe from online- then added in whatever I thought would be tasty. I pretty much just dumped in ingredients and kept tasting it until it was sweet and tasted like Fall.
It was a hit.

I hot-water-bathed the apple butter for around 10 minutes, as well.

Dear Rowan

Sweet Rowan,

I've been lucky to spend some good, quality time with you the past couple of weeks. Last weekend your Daddy took Lily to see River and Canyon and you stayed home with me. You helped me pick up a mattress for your sister's new bed, helped me put the bed together, and snuggled with me a lot.

I've also gotten to sleep with you a few times. At night when your dad is out in the living room, I bring you into my bed so we can snuggle. You're the best snuggler there is, my dear.

I've been thinking a lot about losing you lately. I've tried to remind myself to cherish the times when we are next to each other in bed- or when you fall asleep and I rock you instead of putting you down so I can do other things.  The past couple of times we were lying in bed together, I held you so close to me. I wanted you to feel all the joy you were bringing to me. 
I've found myself wanting to stay at home. I guess I want to soak up all my moments with you... just in case.  I know I need to be in the moment- and I try and succeed most days. Other days I feel your skin and your life. I listen to your voice and watch you suck on your hands. I smell you and I try to make you smile. You're so deeply loved...

You've gotten so strong the past couple of weeks, Rowan! We are so proud of you. You've gotten more vocal- and you're holding your head up like a champ. Your smile and your goofyness melts our hearts.

Today I just wanted you to know that you are a gift. You are a wonderful blessing to our family and we love you so very deeply.

Love, Mommy.

Girls Trip!

A few weeks ago Lily and I went on a girls trip to Grandma Gretchen's and Grandpa Doug's house and lake cabin. Lily and I had a lovely time hanging out and seeing people we love at the lake.

Grandpa took Lily fishing...

I just love the look on my Dad's face!

Grandma Gretchen was there and Grandma and Grandpa GG came out, but for some reason I failed to snap adequate pictures of them.  Boo me.

1st Day of Pre-School

Big changes this week for the Mayer Hammer family! Lily started pre-school and was so darned excited.  Mainly, she was looking forward to her new cubby where she'd be able to put all of her things.  About a month ago she said, 'I'm SO excited for my new cubby!' Then she asked me, 'What's a cubby, Mommy?'

Anyway, she got her school clothes, packed her lunch and school supplies, and was off.

Monday wasn't a sad day for Steve or I at all. We're so happy for Lily's new journey. Can you believe how grown up she is?

 

Lily with Miss Crystal

All wiped out after her first long day of learning.

Erin's (attempt at) Hobbies- Photography

A few months back I decided to take myself on a silent retreat to a little cabin in the woods. I ended up bailing early due to boredom and king-sized ants, but while there managed to take a few shots.

I plan to have a do-over of the silent retreat now that I know what to expect, in case you were wondering:)

I also took this shot of my cool uncle, Ivor. Enough Said.

Weekend at Grandma's v.1

We've been lucky enough to spend the past few weekends with ALL the grandmas and grandpas... Here are some pictures of our time with grandma and grandpa Hammer, Emily, River, and Canyon.

Rowan LOVED the hot tub- Lily doesn't like to get splashed- they boys love to play- and everyone loves the kids. We had a great time. What a lovely weekend.

Pre-school, here we come!!

The past two weeks I've been pretty obsessed with this whole pre-school thing... When is the right time? How do you select the right school?

I'm sure some will think- 'sheesh, your kid is three-and-a-half years old, don't worry.'  And I'm not worried, but I have had thoughts rolling through my head that pertain to her future. (Steve was involved in this, too... but I'll just speak for myself).  I have been wondering what kind of life I'd like for my daughter- what kind of opportunities I'd like her to have- and how I can help provide her with all things necessary to make her a smart, kind, and thoughtful person.

I've been fortunate to spend quality time around a lot of people whom I consider to be educated, wise, well-rounded, respectful of other cultures and races, open to new and different experiences, and on and on. I've spent time with people I wish I could be more like, and whom I would love my daughter to be like.

Me? I'm often hesitant to try new things and feel I've led a fairly sheltered life.  Some of this is because of my personality and some because of where I grew up.  I went to a very small school from kindergarten through my senior year- graduated with 26 in my class- and went to a small University 17 miles from my hometown.  I just didn't have the drive to experience more. Now I do, though.

Bottom line is that I want Lily to do as much as she wants to do, to travel, to experience all she can- and I want to support her in that.

So, Steve and I have decided to enroll her in the Children's Montessori Center in Fargo.  We took Lily there today to tour it and to meet her new teacher. She took to it as we expected she would; she jumped right in and played outside with her new friends.  But what she was most excited about was the cubbies. That is huge for her- she talks about her cubby all the time.  So if anything, we've got that!!

Here is a video of her new school! (This must have auto-corrected to Lilly...by the way)

I'd love to hear your thoughts on the Montessori programs...

Erin's (attempt at) Hobbies- Wall Hangings

Most of you are aware that I'm a regular attendee of DIY Wood Studio here in Fargo.

I guess I've established myself as the scavenger of the group because my all time favorite thing to do is pick up scraps of wood and try to put them to good use.

Here is a project I completed with wood that was lying around the studio. The tools I used for this project were:

• Saw-Stop Table saw
• Miter Saw
• Jointer
• Clamps
• Glue
• Tung Oil
• Keyhole Bit

First I rustled up some wood pieces I thought were varied in color and texture and gathered them together.

The next step (which I don't have pictures of, unfortunately) is to cut the different pieces of wood to the lengths and widths desired. I used the miter saw and table saw to accomplish this step.

Then I took the wood pieces over to the jointer to make sure the edges were even to ensure a good, solid seal during my clamping and gluing phase.

Next, I glued and clamped the pieces together by twos and let them dry an adequate amount of time.

 After the smaller sections were dried, I glued and clamped those together to make larger sections secure.

 I finished this project by gluing some smaller pieces of wood on top of the clamped sections to add dimension and visual interest.  Once the pieces were completely dried, I coated the whole project with Tung Oil.

I used a keyhole bit to make the hole for hanging on the back of each and centered the hole by weight.

Here's the completed project:

I'd love to hear your feedback and comments on these pieces...