Monday, October 31, 2011

baker, baker... make me a crepe.

This weekend Grandma and Grandpa Hammer came for a visit... Lily loves Grandma's crepes and helped stir.

She's a good helper with a sweet little voice.  She's been such a good kid through all of the recent changes; so patient with us.

We love you, Lily.

Wednesday, October 26, 2011

A wonderful day

What a wonderful day for my brother, Matt and his wife, Jill... I can't even explain how happy I am for them.  My niece, Mia is lovely.

Mia Gisele Mayer   born 10-25-11

I want her to have this....
and maybe these...

Love to you, Mia.

Friday, October 21, 2011


Dear Rowan,

I saw the images of your MRI today. I've wanted to see them for weeks. I wonder why, though.
Maybe I just wanted to see if this whole thing was real. It is real, I know that... but I guess I needed proof.
Mostly, I wanted to see your little brain. I wondered what it looked like. I hoped that maybe it wasn't that badly damaged as other baby's brains with Lissencephaly are.  I thought maybe only a couple areas of your brain were affected, but that maybe some was normal and was ready to learn- to absorb the world.
Well, my dear, it all seems to be affected...

In a way, I wanted to jump into those pictures. I wanted to stare, and look, and to be near them, I guess.  I wanted to curl up in them and examine them for some hope.  I have no idea what I'd look for- I'm no expert- but I'm your mom and I want to take it all away. I know there's no fix. I know there's nothing I can do but hold you and enjoy you... I wanted to see those pictures, but now I have proof. And I sit here wondering what to hope for.

Hope is a funny thing, though.  I doubt I'll ever stop hoping for you. I hope I'll never stop hoping.

Today I wish the medicines you're taking will relieve you of enough seizures that you're able to interact with us and to make noises and to look at us.  I also hope all of the medicines don't sedate you so much that you aren't even present.  I want that one little golden window somewhere in between.  That's what I'm going to pray for as often as I can.  I pray we can have some time with you every single day where we know you're with us and where you can understand that you're a part of this family. I want you to feel so loved, Rowan. I want you to feel safe and taken care of and I don't want you to ever, ever feel like a burden to us. God, I hope you never feel that.

I miss you more than I could ever explain- and my heart hurts.

I think I want those pictures of your brain, though, because I want every single part of you and every single memory.

Today your daddy and I are sad.  But we love you so much, my dear.

Love, Mommy.

Letters to Lily

Wednesday, Oct 12, 2011
Dear Lily-
You've taken to screaming a lot lately.  I'm not too sure why... maybe you want to assert yourself? you want to be heard? or you just want to annoy me...
Regardless, you're a great kid.  You and daddy carved a pumpkin the other night because Halloween is fast approaching.  He takes it into your room and shuts off the lights so you guys can look at it glow.
You now have 5 ponies and like to carry them around with you. You're super creative and like to make up little stories about different characters; your mermaid, strawberry girls, cow, ponies, and others.  Everyone likes to hug each other and the like to say, 'help me, help me!'.
I sure do miss you when I'm at work- it's always the best part of my day; the picking you up part.  I speed over to Nikki's house and can't wait to see your smiling little face.
And I think I kind of miss you overall.  I feel like I haven't gotten to really spend time with you in weeks.  Maybe I just need to try to be more present when we are spending time together? 
A lot has changed and you are unaware.  I hope to keep it that way for a while.

Love, Mommy

Friday, September 30, 2011

Dear Lily-
This morning I dropped you off at Nikki's house for daycare.  You didn't really want to go- wanted to stay home and play with your purple ponies I think.  You've been so great this past week travelling back and forth to the hospital with either me or daddy to see Rowan- or to switch off, rather.  You were especially tired last night and I felt terrible for that.  You had a hard time sleeping and woke up a bunch- you do that when you're over tired. 
I just wanted you to know that I love you so much and know all of this with Rowan will affect you.  But your dad and I are convinced that going through this with us will help you to be a compassionate person...
We will make sure you get to do all the things you want and that your life is wonderful.  I'm not too sure why I'm writing this- probably mother's guilt, but I just wanted you to know that we love you so much. 
I've missed you the past couple of weeks.

Love, Mommy

Monday, August 8th 2011

Dear Lily-
IMG_5503I've been thinking a lot lately about how I felt when I was pregnant with both you and with your brother.  I was wondering to myself if your personalities matched 'on the outside'. I remembered how you seemed to move and kick pretty regularly, like all babies do, I suspect... but that you seemed to get mad or frustrated at being trapped, or without room, and you'd have little tantrums.  You'd kick and kick relentlessly- and then you'd wear yourself out and rest.  It seems to match your personality today, too.  You are really so very smart and have such a sweet and interesting disposition.  But when you're mad, you're mad! You have a fiery little temper, but if you're frustrated it's over as soon as it's started. 
I've found during these times that you mostly just want a hug.  You don't really like to get in trouble- it seems like you get embarrassed or like you feel bad... and I don't want you to feel bad, Lily.  It's ok to make mistakes.  (this is me worrying about you when you're older...) So, I just hug you and try to guide you in the ways I think are best.  I just try to love you through and through so you always know you can come to me.

I was also thinking of some of the funny things you say and wanted to remember them:
  • Watermelon = meller wadin
  • "Will you hold me, mommy?"= "Can I hold you, mommy?"
  • Dental floss = sloss
Love, Mommy

Monday, August 1  2011

Dear Lily-
I've recently started this blog as a way to save memories, pictures, stories, and my love for you.  I wish I had started it sooner... I hope these letters will chronicle your life and will help you to always remember that you are absolutely wonderful.  I love you so much.

I went back and found some pictures I think you'll love to see.  Some of the day you were born... I should tell you the story of the day you were born, now that I think of it!

You were due to be born on March 26, 2009.  Daddy and I were in Fargo, but there was some really terrible flooding going on, so all of the hospitals closed and evacuated their patients.  They said that we should go to a neighboring city either to have you or until the hospitals here in Fargo opened up again.  Your Aunt Emily and Uncle Rich live in Bismarck, and Aunt Emily is a nurse, so we decided to go stay there for a little while.  We loaded up all of our stuff, the dogs, and some baby clothes (just in case) and took off to Bismarck on your due date.  Before we left, though, we had to take the toilets up out of our house, close up the drains, and shut off the water in case it flooded.  It was a mess and kind of a mad dash to get out of town.  They were about to close all of the interstates, too!

We arrived in Bismarck, and I was huge! I was so ready to have you, but didn't know what to expect.  On Saturday, my mom and dad- your grandma and grandpa Mayer, came to Bismarck to see Steve and I.  It was almost Daddy's birthday, and we all went out to dinner.  I sure didn't feel very good, but I walked around the mall and tried to keep up with everyone.

That morning at about 3:00 AM I went into labor.  I woke your daddy up and we called the hospital in Bismarck to make sure they had all of my records from Fargo.  They did and told us to come right in.  My contractions came on very fast and I was starting to think you'd come soon!

We checked into the hospital and got all ready to have you.  I got into my gown and your daddy was by my side.  He held my hand and got me water to drink.  We were so nervous and excited.  There was a time during my labor with you that your heartbeat began to slow, so I had to change positions and we had to make sure you were getting enough oxygen.  Eventually the doctor came in and I started to try to push you out.  The doctor thought you were a big baby and you weren't coming as fast as he thought you should have.  He gave me an epesiotomy and had to help you get out with an instrument that suctioned you out.  You came soon enough, and the doctor laid you on my chest.  I wish I could describe that feeling, Lily... I had gone from only being able to feel you move and kick and wonder what you looked like to touching your warm, soft skin.  Your little voice squalked and you had the sweetest poutiest look on your face.  We cried and welcomed you and in an instant we were changed. 

Grandma and Grandpa Mayer happened to still be in town, so they came over eventually- and Aunt Emily was there the whole time taking pictures!  We had you at 2:16 in the afternoon and it was so wonderful.  You were tiny; only 5 pounds 14 ounces.  The doctor was pretty wrong about your size... I think I was so chubby, he thought you were big! 

The nurses made sure you were ok and the doctor made sure I was ok.  Then they moved us all to a family room so we could have some more space and could be together...A few hours after I had you I didn't feel very well.  I had to go into surgery, so Daddy stayed with you.  I was scared and Daddy was scared, but mommy's best friends, Leah, Lynnette, and Kirsten had driven all the way from Fargo to see you, so they stayed with Daddy.  Grandma Joyce was also there.

That night there was a terrible blizzard! Twenty inches of show! The girls got stuck in Bismarck and had to stay in a hotel room.  But they didn't care- they were so happy to meet you.

You, Daddy, and I stayed in our hospital room for a couple more days.  We held you and kissed you- I nursed you and changed your little diapers.  We think those were some of the best moments of our lives.  You were here, Lily, and our lives had changed.  Our hearts had changed... We were never the same again. 

There is nothing your daddy and I wouldn't do for you.  We love you more than anything in this whole world, Lily.  You are wonderful.

Love, Mommy.

your 'Castle' from Grandma Joyce

You look so much alike!

Grandma and Grandpa Mayer think you're just wonderful

The first time you held your brother, Rowan

Hanging out with Grandpa Doug

Playing with Daddy's 'toys'

Grandma Joyce thinks you're so sweet

Great Grandma GG loves you so much!

Playing with Grandma Gretchen

Daddy holding you while mommy was in surgery.

What a sweet little face!
Aunt Emily holding you

Mommy and Daddy are so happy to meet you

With cousin Canyon on your 2nd Birthday

Helping Grandma Joyce cook crepes

Letters to Rowan

 I decided this is a better format for letters...

Dear Rowan,
We get to take you home today- and I think reality is finally setting in for me.  I'm so scared to go to a place that was once... just home, I guess, now that we're all so different.  I am not scared I won't know how to take good care of you, or what to do when you are fussy...
I guess I'm not too sure exactly how I feel.  I'm just having a hard day today, Rowan, and I sure don't want it to affect you. 
I don't know how to go back to normal anymore...
but as always, I love you so much.

Love, Mommy

Dear Rowan,
I just wanted to tell you how nice it was to see you today.  I say that because, although I've been with you the past week, I don't feel like we've really connected- You've been so groggy and tired and sick.  Today, though, you woke up and smiled your big, toothy grin at me and I got so emotional.  I can't believe how much I've missed you.  You're such a good little soul, Rowan and you sure do light up my life.  I even got a giggle out of you today!
You were almost asleep when I had to leave- getting sleepy from more medicine.  But, my dear, your little smile is staying with me and, I think, has moved me more then I ever knew it could.
Today's a good day.
I love you so much.

Love, Mommy

Dear Rowan,

It's been three days since we found out you were sick. I've wanted to write to you, but haven't really known what I wanted to say. Now I think I know.

I love you so very much, my dear. I want you to know that your daddy and I have committed ourselves to you and to your sister-and that we will do anything we are able to do to make your life happy and comfortable. This past week you haven't really been yourself. You aren't smiling and you aren't talking like you used to. You have lots of seizures, which are taking all of your strength. You aren't looking me in the eyes and I miss that so much, Rowan. I miss you.

I'm so sorry you have to go through this. I'm sorry for the life you won't get to see and experience. I'm so sorry for what you had to go though this week at the hospital and I'm sorry for how you're feeling right now. It must be so hard for you.

Your sister is so young she doesn't know you're sick. She will, though, soon enough and I worry how that will affect her. But she loves you so very much and I know she wants you to be happy and to feel better.

Oh Rowan, I wish I could fix your little head- and that would fix my broken heart.

I love you so much.

Love, Mommy.

 Dear Rowan,
I have wanted to write to you to tell you just how much I love you and how special you are to your daddy and me.  I found some pictures and wanted to show them to you.  There are some of the day you were born and of all the people that love you more than they can express.
You are the sweetest baby I've ever met.  You are so laid back.  You love to smile, and when you do it melts my heart.
You have two bottom teeth and should get your top ones soon enough.  You know how to roll over, but don't very often at all.  Why? Because you're a chunk!
I took you to the doctor on Sunday and you weighed 19 lb. 14 oz. I'm so glad you're healthy... You light up a room, Rowan, and seem to make everyone around you relax.  There is no way for me to put into words just how much I love you, but know that I do, my dear. I will love you forever and ever.

Love, Mommy.

Right after you were born

Your daddy was sick with a kidney stone!

Your beautiful feet

Mommy loves you so much.

The first time Lily held you

Grandpa Doug and Great Grandpa Howard think you're wonderful

Grandma Gretchen loves you

Grandma Joyce loves you, too!

Great Grandma GG coudn't put you down

Auntie Tessa will always be there for you

My handsome boy

Rowan and Daddy...

Your first time in a swing

You were a good eater!

Hanging out with daddy- so sweet

Monday, October 17, 2011

By & by

It's a new day- or is it?

A strange thing days are now... In the way that each is different, each is different. But they've all felt strangely the same. Get up, hold and kiss Rowan, get ready for work, get Lily ready, drop her off, feel guilty, miss her before Nikki's door closes, and drive to work. Try to focus at work and earn the money I'm paid. Wonder all day how Rowan is doing. Call Janet daily-or she calls me. Call the doctor with questions, call the nutritionist with questions, try to focus on work and earn the money I'm paid. Hold back tears, hide worry, make jokes, give back to people...

Lily is changing so much. I hope I'm paying attention to that. I hope I see it all. I hope I'm being a good Mommy to her. Rowan is remaining fairly constant. Some days are better and some are worse, but most are similar to the day before. And that is ok.

I've tried to give more hugs to the kids- and even to Steve. We could all use them and our time together isn't guaranteed, so I want to make sure the three loveliest people I know know I love them without question.

I think we (Steve and I) are doing well. I'm sometimes surprised we haven't fallen to pieces... But every day I think, "tomorrow I can do better". And every day I'll try.

Thursday, October 13, 2011


I've been thinking a lot about people and resiliency and all that keeps us going.  I wonder how people manage to keep their heads above water during difficult times... it's amazing, isn't it?  We all have a little something in us that keeps us going when we feel like we want to cash it all in.  It's in there.  It's in me, I guess. 
I've really wanted to be alone lately- or more specifically, I haven't wanted to get close to anyone.  I have wanted to keep busy and handle tasks and just kind of tread water, I guess.
I want to be quiet.

The past couple of days have been a bit tough.  Rowan has regressed a little bit- more seizures, longer seizures- he's groggier and much more irritable.  He started a new medication last night- so three for seizures now, one vitamin, one for muscles and Ativan as needed for seizures.

I think we, well I... I can't speak for Steve... got my hopes up that we were making huge strides and that he'd be his normal self again and stay that way with the medications.  And I think we can still get there, but it's become so much more real to me that this is going to be a long road full of questions, doctor's visits, medication changes, questions and more questions.  Each night I wonder how we can do this every day.  I'm tired.

I know I sound pretty negative right now, and I'm sorry for that.  Today I feel overwhelmed and scared and so conflicted.  On one hand I have the loveliest little girl I could hope for- she's amazingly smart, patient with us, and spunky.  Her chipper little voice makes my days and minutes and I adore watching her learn and grow and become her own self.

On the other hand, I have this beautiful little boy who probably won't do all of the things Lily can do.  He struggles to stay awake, to have a half hour lately without seizures, and to find noises with his eyes.  Last night he was laying on the couch and was pretty fussy.  I was moving his arms and legs to try to cheer him up.  I put his warm little hands on my face and held them there... and I thought to myself, 'Erin- remember those warm hands. Remember what they feel like and remember that there's so much life in there.'  I never want to forget his hands.

Cards, letters, angels, and a book- Bright spots that I revisit often.

Sunday, October 9, 2011

Laughter fixes everything

Earlier tonight I was feeling a bit down...but then I saw this and my heart melted. Rowan is having a really good night and I wanted to share it with you.

We have been so loved. I want to thank you all.

Monday, October 3, 2011

Home nervous home...

The time to go home is fast approaching- and I'm scared.  Last week all I wanted to do was to bring our sweet little guy home so his sister could bug him and so we could all be together.  But now I'm not so sure...
Steve and I haven't slept in the same bed or been in the house at the same time in two weeks- we've been shuffling Lily back and forth.  We've kissed in passing at the hospital- and things have changed.  I'm nervous to interact at home now that everything is different.  Now that our guts have changed.

Rowan will need his urine checked for ketones five times a day and his blood sugars checked a few times daily.  He's on a special Ketogenic Diet and I have no clue how to manage it.  He drinks formula right now- but will want food again soon, I'm sure.  There are ratios and scales involved and I am so scared I'll screw that up.

And then there's the medications- three different ones a day.... Appointments with a dietitian, geneticist neurologist, family services, social workers, and on and on... I'd be lying if I said I wasn't scared to death.

I'm afraid Steve and I will be unkind to each other and I'm afraid Lily will suffer because of a shift in attention.  I'm afraid to be on our own without the help and guidance of hospital workers.  And I'm afraid Rowan will slip back into longer and more intense seizures and I won't know what to do.

But- This sweet little boy wants to come home.  And we'll need to suck it up and figure things out.

One day at a time.