update on my girl

I wanted to post a few pictures of a very fashionable girl! As soon as a camera is on her, she gets a goofy smile- similar to her mother, I suppose.

Lil is 5 now and is amazingly smart. Her favorite thing to do is to color. Her favorite food is cake.

She has to wear navy, khaki, white, or light blue to her school, but I try to keep her clothes good and comfey.

Cool striped pants

adorable ruffled pants

Lil got to go to Grandma Gretchen's for the weekend. She made sugar cookies shaped like princess stuff and cooked crepes.  

Lilyism- Last night I noticed she may need to use the bathroom, so I told her to listen to her body and to go into the bathroom. Her reply: 'you're not the boss of my butt'.

That is all.

When the boss is away....

Well folks, the boss has left the building.

Steve and I are borderline giddy with the anticipation of not being berated, glared at or corrected. The tension in the house has subsided due to the removal of the egg shells we've walked upon for so long.

No longer must we live in constant fear of saying the wrong thing- or of not hearing correctly. (In case you're wondering- not hearing correctly is a huge deal. If you accidentally don't hear something the soft-spoken boss says, you're really in for it.)

Threats of physical violence are behind us.

The boss has gone to visit the Grandmas.

The reality vacation

It's really been a long time since I posted anything- Seems like time just keeps flying by.

It's early December already, and the holidays are upon us. This is always such an overwhelming time for me because I'm not historically a great traveler. I get anxious.

We recently took a trip to Buffalo Gap to Holly and Jeff's ranch for Thanksgiving. It was Grandma and Grandpa Mayer's 67th anniversary, Grandpa Howard's 90th birthday and was such a great reason for us all to get together.
I didn't get a ton of pictures, but we sure did have a great time.

Rowan was really out of sorts this particular weekend and it took a toll on both Steve and me. I'm sure it got old for the family, too- I felt like I didn't get to spend as much time having converstations with people as I'd have liked. And I know Steve was feeling similarly.

We are quickly coming to the realization of the overwhelming nature of special needs. We get a ton of help, that is for sure. But as the months go by and as Rowan gets bigger it is harder and harder to comfort him when he is upset. We also so rarely know what is even bothering him- and he seems to get the most upset on weekends, which gets difficult. 

He likes his routine and doesn't enjoy being cooped up in the house. We're learning that about him. He's starting to express himself; likes and dislikes, which is wonderful. 

I guess what I'm trying to say is that when we are home and in our own little world- the world seems a bit easier... when we travel and are out of our comfort zones, without certain resources, and are overtired- things are exponentially difficult.

Sometimes vacations do not feel vacation'y.

All in all, though, life is good- Lily is a genius... exhibit A:

And the ride home with Grandma Gretchen and Grandpa Doug was pretty pleasant:)

No news is good news.

I haven't written in such a long time! Grandma Carole must be getting antsy:)

Our family is really doing well lately- we've been busy this summer trying to get as much outdoor time in as possible.  Here's an update on everyone:

Rowan has been really, really vocal- see his video! He went to the Children's Hospital again this past week and had his VNS turned up two times. Now every five minutes he sounds like a little robot.
I'm not sure if it is helping or not. We've seen much more seizure activity lately, so we will just keep an eye on him.

Lily has been great, too- she is feisty and bossy while being completely lovable and sweet. She keeps us guessing.

Last night she was sleeping in my bed and woke up at 4AM demanding a shower complaining that naps were 'stupid'. Lily 1 Erin 0.

Here she is making a box for Steve on Father's Day.

Steve is in Madrid right now. He flew all night last night and landed safe and sound. He is there for research and to present at a conference and will be gone for 19 days. He was recently awarded a fellowship at NDSU, which is a huge accomplishment.

And this is what I've been up to.

surgery and fears

Rowan has surgery on April 3rd for a Vagal Nerve Stimulator implant. We'll travel to Gillette Children's and he'll stay for four days. Not totally sure how I feel about it...

It's an interesting thing to have to make decisions for a child who cannot make them for himself- or give you an indication of whether it's the right thing; whether it will help. We have to depend upon the direction of his Neurologist and the feedback from other parents of children with Lissencephaly.

Right now Rowan seems to be regressing. He isn't as strong or as verbal as he normally is. This has been going on the past few months. We all suspect it's due to his growth which, of course, affects the success of his medications.  This is no big deal, really, but it reminds me that we're dealing with a brain condition for which there really isn't much help. Sometimes when he's doing so well, it's easy to live in the bubble of growth and change and progress. I find myself thinking he'll shock all of the scientists and researchers with his strength and abilities... then the regression and I'm taken back to what really is.

If I were honest, I'd say that I wonder sometimes if all of the therapies work. I know they work for a while, but does he benefit from them? Does he enjoy them? And then I wonder if some of the therapists are really there to help, or are they just looking for billable hours? You may think this is harsh, but when you're the mother of a child with severe disabilities, you think these things. Sometimes it seems he's overwhelmed with therapies. He gets tired, and when he's so focused on the physical, we lose his verbal skills. He seems quieter and more introverted the weeks he has three or more therapies.

Don't think that I would ever deny him anything helpful- in fact, there isn't much I wouldn't give this kid.... But there has to be a balance. I want give him the things he enjoys- the things that will make him feel better, happier, more comfortable. Fact is, he will not walk. I question whether he will even sit. That said, I do want him to be happy and to enjoy stretching and those things that will help his body to feel better. I'm sure I'm making no sense, but it's helped me to write down.  I don't want to push him for my benefit. I always want to do what is best for him.


Row is getting big. He wants to be held like a baby, and I love doing that for him- my back and neck are paying the price. I wonder how much longer I can hold him in ways that comfort him. I am sure we'll all adapt to his growth, him included.

It may seem like I'm down- and I think I am. I'm worried about him, about the upcoming surgery, about the unknown. I understand how to navigate what we've been through, but have no idea what will happen in the next year.

I belong to a Lissencephaly group, and I see parents lose their kids after desperate battles... unexpected ones. I'm scared for that. I wonder when the day will come we'll have to fight that battle...

So- yeah. I'm sorry if you were expecting a more positive post. I've just been scared lately.

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.

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.

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.

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...

I get it now.

This past week Steve went to North Carolina for a conference and was with the kids. My mom- and later, my dad- came up to help me.   My mother and her friend, Bonnie, also walked in the Fargo Marathon 10K.

It's always so nice to spend time with my mother. As I get older, I see her in different ways. Over time, she's become more of a human being to me- more of a whole person. She always has been a 'whole person'; don't get me wrong. Now, though, I think I get it.

Initial stages of parenting made me feel two-dimensional. I'm not saying it isn't the best thing that's ever happened to me, because it most surely is. But I think my focus shifted to raising my kids and to taking care of their needs so much that my other cool parts just faded away. I guess I found myself feeling flat, with no bumps or corners, or interesting anything.

Lately, though, I feel much more of a pull to take care of myself as an individual... who also happens to be a parent. It's only one part of me. I feel more alive. I'm wearing more color. This is a big deal...
I do my woodworking, photography, bake, do art projects with Lily and for myself, I walk the dog, have friends, and love my creative side.

Parenting will always be my most important, number-one, most enjoyable and exhausting job. But, like my mother, I'm a whole person, too... and I'll prove that by: showing you pictures of my kids:)

First time roasting marshmallows.

How does swearing even work?!

Speaking of Cussing, I've been wondering what you all think about the topic. Specifically as it relates to kids... your own kids.
Steve and I have our opinions- we really don't have a problem with it in most regards. He can probably speak to this a bit better than I can, though, being a smarty-pants PhD student who's studied linguistics quite extensively.

We feel that words are just words- the fact that some are 'naughty' is kind of weird to me. I get it, you know... I understand it... kind of.

But really, I don't. Why are some bad? Why is it offensive to use certain words?
I found an interesting article about swearing that helps a bit.

But still I wonder... I often have a pretty colorful vocabulary. It got much better once I had children as I'm sure happens to lots of people. I grew up in a home where my father didn't hold back from swearing- but even he's better now that he's got Grand-kids.

Let me tell you a story:

Our beautiful daughter, Lily, is amazingly smart, very sweet, and srong-willed. (In my opinion) She's not the irritating type of strong-willed. She's not the kid that won't do anything or that throws fits constantly bossing around the entire house.  She's very specific about her choices- and in instances when she does not want to apologize for something, she just won't do it.

She'll stay in time-out for a while refusing offers to be let out for apologizing. She'll scream and cry and say, 'I'm ready to get out now!' yet refuses to humble herself enough to apologize, perhaps because she doesn't mean it.

There have been two instances where she's gotten so frustrated she screams, 'DAMMIT, DAMMIT, DAMMIT!'. Always three times. Always toward the end of the time-out instance. And ALWAYS in context.

She isn't dropping the bomb for no reason- she's really mad!

And in a way, I respect her for that. Now I'm sure Grandmas will disagree with me or may shake their heads in disapproval.  So let it be known that I'm still torn on this one...
What I'm really wondering is how to work through this with her as she grows.
Steve and I believe that swear-words are only words, but understand that they offend some and that we should respect that. We want to teach her the same.

For example; I was putting Lily in her carseat the other day and she said, 'dammit'. I explained to her that some people don't like that word- and that Grandma Joyce (whom we were traveling to see) will not like Lily saying that. Later that afternoon she told me, 'Grandma Joyce doesn't like it when you say Goddammit'. So she remembered and didn't say it at Grandma Joyce's house.

How do you all feel about cussing?

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.

Cuss words and crazy-eyes

Dear Lily-
I don't want you to think we've forgotten about you! How could we possibly?
You, my dear, are something else lately... You're such a lovely mix of sweet, sassy, smart, angry, kind, independent, and cute.

A couple stories:
The other day I was kneeling down doing something and you looked at me, grabbed my cheeks in your hands and said, 'mommy, do you have brown eyes?' and I said, 'Yes.' You said, 'they're crazy eyes! You're so gorgeous.'
I wasn't sure whether to be flattered or not! It was funny.

Your daddy put you in time-out a few evenings back because you were hitting. You got so angry and screamed, 'I want out of time-out RIGHT NOW, daddy!'. He asked you if you were ready to apologize and you said, 'NO! Goddammit, Goddammit, Goddammit, GodDAMMit!'
We hid our laughter and waited for you to cool off a bit. But I sure did relate to you, Lily!


I've also wanted to tell you a few things that have been on my mind, Lily. I want you to listen carefully.

• I'll love you forever and ever- to the moon and back and past the stars.
• I hope to be such a constant in your life- someone you can trust to be steady and understanding and who tries to remember that you're a little person. You're your own.
• I never want you to feel burdened or put-off by our family's situation. It's something that will make us all better people... and I hope so hard you don't look back when you're older and feel you got less than you should have of anything.
• It's time to start using the big-girl-potty.
• Your temper is impressive! I hope this fiery side of you serves you in your life.
• I'll always be by your side. No matter what. No matter where.

 Love, Mommy.

Birthday wishes

Age 36 has come, and although I wasn't aware I had wishes, they seem to have come true. I got some time with my children, some much-needed time with Steve, and some time to clean and organize (weird, I know).
But wishes are funny things, aren't they? Sometimes I can't help but wish and other times I feel so silly doing so. Today Steve and I were driving listening to a story on NPR about a woman who'd been in an accident. She described all the therapies she'll need to endure - or get to endure- through the coming months and years and I said, 'I wish Rowan had that opportunity'. Isn't that funny, though. Wishing he had the opportunity to learn to walk, or to learn to do things. Maybe funny isn't the right word.
I guess what I'm trying to say is; life changes and your wishes adjust.  But this is true with everyone. No one has a perfect life without shifts and changes- happy times and sad times.  Everyone experiences pain. We're not immune from that- no one is.
I'm not scared. But adjustments take time- and orienting my brain and my heart to the changes that have occurred and preparing for the future sneaks up on me. Little by little we adjust. I suspect that's how everyone does it. 
Here is where my heart is, though... always.

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.

August and everything after

My friend, Jay, was kind enough to fix my broken computer.  Because of my good fortune in friend-selection, I can now upload pictures from my camera to this thing- so you can see what we've been doing since the Summer.
This will most certainly be a mish mosh- just so you know what to expect...

Our Rowan pre-diagnosis

Lily and Daddy carving a pumpkin for Halloween- they had such a great time

 One September Sunday afternoon, Steve and I decided to take Lily for a special trip to an apple orchard in Minnesota.  We really enjoyed our one on one time with her.  She's sure a good girl.

Lily peeking through a thing

Three out of four

Lil got to paint pumpkins

 Grandma Joyce must have taken this picture of Rowan while he slept-

One of Grandma Joyce and Lily's special things is making crepes together.  Lil stirs the eggs, the flour and helps- and Grandma Joyce probably loves it even more.

Halloween:

This year, Lily wanted to be Felix the Cat for Halloween.  Steve and I were likely more eager than she was to go trick-or-treating with her.  I was a tad sad because I thought I'd stay with Rowan while Steve took her out- but Kate and Gene were kind enough to spend time with Rowan while we went out with Lil-everyone was happy.

Me and my Felix

A happy kitty

And on to other things...

Goofy Lily feeding her brother

And Goofy Lily eating worms...

Life is good today- there was a benefit for Rowan yesterday, and I'll write more about that tomorrow. I want to give it the space it deserves... Good night!

Beautiful boy

It's just over a month now that we learned Rowan was sick. And honestly, I think it's harder to accept now. I have been more emotional- more scared-more heartbroken as time's gone by. Don't get me wrong, I adore my beautiful boy. And that's why my guts hurt.

A couple of weeks ago Rowan developed a small rash on his inner elbow. Steve's been taking him to the neurologist to check it regularly. They're worried it'll turn into Stevens Johnson's Syndrome, so no one wants to take it lightly. it. Last Friday Steve and Rowan were at the doctor again to have levels checked and the rash looked at. Steve called me and said, 'don't freak out'. So immediately, I started freaking out.

The doctor said Rowan would likely have to be admitted to the hospital, either here or at Mayo so he could be monitored for the rash while his meds were reduced or stopped. She is a pediatric neurologist, but she doesn't know everything...

She made some calls to other doctors and decided we wouldn't have to be admitted, which was wonderful!  We'll go there eventually for outpatient appointments, though.

They took Rowan off of Topamax and we're to watch the rash- it's now a week later, but the rash is still there, so we'll see tomorrow what comes of that.

Rowan had a swallow study done today to see if any liquid was going into his lungs.  We have been worried about that.  He's been vomiting from time to time and has a cough pretty regularly.  If he wasn't swallowing well, a feeding tube would be the fix.  It would break my heart to go that route since sucking is one of the things that makes him feel better.  So happy to say that his swallowing is great for now- a little weak, but nothing seems to be going into his lungs.

What a relief that was today.  I sure needed that.

My beautiful boy likes classical music- we listened to it in the car on the way to our appointments.  His eyes were open, focused, and he didn't make a peep.

He's been around a little bit more the past two days.  I wish I could convey what a gift that is. He tried standing a little last night and I was so proud of him.

He is so smart....

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.