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

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.

Nighttime

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.



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.

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.

Medicine and Prayers

If you know me at all, you know I'm not religious.  That hasn't changed.  But I'm praying now more than I ever have before. Our wonderful little boy, Rowan, was diagnosed on 9-20-2011 with Lissencephaly and our whole world changed in a moment.  I held my sweet baby, who was so groggy from continuous seizures, and I cried feeling my heart collapse in on itself... The doctor started reading off of his MRI results and after the first words... 'There is significant decrease in sulcation in the frontal...' I knew we'd never be the same and I knew Rowan was very sick.  I'll remember that moment for the rest of my life.  Dr. Yoe, a nurse, Steve, Rowan and I- in room 489-at Sanford Hospital in Fargo.  That's the moment...

I cried and held him, loved him and felt so sad he wouldn't get all of the life I had planned for him.

And let me tell you, I sure had a plan for our little guy. I just have a different plan now, I guess.  A modified one.  My new plan is to try to keep Rowan alive and comfortable and to try to get some of him back.  He's in pICU right now and sometimes wakes up in as happy a mood as a medicated little baby can be in.  I see glimpses of my 'old Rowan'.  He coos and smiles and tries to grab his feet.  He's just so sleepy, though. 

I miss him so much. I wish I had taken more videos of him doing his Rowan things. I wish I had more pictures from before.

I wish I could fix his little head and I wish I could take him home and go back to normal.  That's what I'm wishing right now.  I guess I don't want a new plan- I want the old one back.

Here's our sweet boy resting after receiving three different anti-seizure medications and before a second EEG.

The lake

As I mentioned in my previous post, I was leaving with the kids to visit my parents in South Dakota last week while Steve fished with his dad in the Florida (Flordida, per Lily) Keys.  The first day we arrived, we all visited for a bit and then packed up and headed out to the lake.  I was excited for Lily to be able to run around a bit and get dirty- and for Rowan to have some Grandma/Grandpa time. 

Grandpa and Lily played with blocks on the deck.  Lily wanted him to build a house around her arm, obviously... They had a nice time.  He stacked em' up and she knocked em' down.   It was fun to watch.

Grandma and Lily snuggled in the mornings. I love this picture... Sleepy mom and sleepy Lily.  Two girls who make me who I am and who I love so so much.

Lily wasn't the only one who got snuggles.  Grandpa and Rowan sure had a lot of fun together.  Rowan learned to touch his feet for Grandpa and loved to talk to him and smile.  I think my dad was happy to have a captive audience-especially one who thinks he's great. 

One morning I took Lily to the top of the hill with my camera.  The sun had been up for an hour or two and the air was warm already.  I wanted to take some pictures of some plants and of the landscape. 

I'm sure you won't be surprised that I ended up taking loads of pictures of her.

Here is my favorite.....