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.

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.

Sweet Rowan's birthday

Happy 1st Birthday, Rowan!
My, what a year it's been


 Last night I was thinking about what Steve and I were doing a year ago this time... I was remembering that I had an ultrasound on the 29th of December and that you were breech.  We got a call from the Doctor that night around 6 PM and he said you'd be delivered via C-section the next morning at 5:30.
We were in shock! We weren't really expecting you to be there so soon- but we were so excited to meet you.
Lily went to stay with friends and Steve and I tried to prepare for your delivery and arrival home as much as possible.
That night, I went into labor with you around 3 AM- And my contractions were so fast. I remember I tried to make a pot of coffee (even though I was directed not to drink or eat), but I couldn't even manage that. I told Steve that we really needed to hurry.
We got to the hospital and I was in such pain. I barely remember them getting me ready for surgery. I felt like I'd deliver you before they were able to operate.
They took me into surgery and you were born by 4:30 AM.

And it's been a wild ride since then, too, Rowan.  What a great year it's been having you with us. You're such a sweet and kind little boy.... I can't even think of the right words to describe you- but 'gentle' comes to mind.

The bottom line is that we're blessed. We're lucky beyond description that you're with us, and I can't wait for the years to come with you in our lives.

We hope you have such a wonderful day today, dear. And we really, really hope the next year blesses you with comfort, and growth, and with a life beyond our imagination.

Love, Mommy.

i carry your heart

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)

i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)

love

Dear Rowan,

We celebrated Thanksgiving this last weekend with your cousins, Aunt and Uncle and Grandma and Grandpa. Everyone had a great time. And you had a really nice time, too. You didn't sleep very well, but none of us did, really. We all came down with a cold and I think it took its toll at night.
I was talking with Leah today and was saying that I'd gotten pretty sad in the midst of all the happy this past weekend. I was so proud of you and of all the kids- and was happy to see everyone together and having fun. But I couldn't help but think about you.  I was so sad you weren't able to run around the yard with the other kids. I wasn't trying to feel sorry for you- or us, I want you to know.  Sometimes it's being around other children that can remind me of the things you won't get to do.
And my dear, I sure do know that there will be loads of things you will do. And that you'll learn and grow and will experience as much of life as possible.  I know that. But I'm still sad.
Last night when I was feeding you you put your hand up by my face and I kissed your hand and tickled it with my mouth. Then you did it again, and again... Then you just held it up my my face.  And I know like I know that you are so smart.
So, Rowan. You're such a great kid- and you're taking this all in stride. You're patient with us and with Lily and you have the most beautiful smile.
I love you to the moon and back and past the stars; forever and ever.
Mommy.

Hopes

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 Rowan

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

10-4-11
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

9-29-11
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

9-23-2011
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.



8-07-2011
 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