The strongest person I know

Last week I had prayer on my mind and there was some wonderful discussion on BlogHer.  Over 1700 people read the post, which is testament to the site and to its reach throughout the world.

I have continued prayers for Lucas- whom I'm happy to report is on the mend, off of his ventilator, and may come back to Fargo from the U of M Hospital in a week or so.  What a difference a week makes. Lucas went from critical condition and a helicopter ride he might not have survived to sitting up, looking at books, and smiling. He's a fighter, that's for sure.  Prayers, energy, medicine... whatever you'd like to attribute his improvements to; he's improved.

This type of stuff changes you, you know?? This having a sick child, setting up camp in the hospital, wondering all the time if something will happen... I'm sure you're thinking I'm saying something so obvious; of course it changes people.  But I mean it REALLY  changes you.

I'm fortunate to know Lucas's mother and to have spent time with his family. We've been up in the hospital two or three times together and have a pretty good understanding of each others child's conditions. And there's something about that... the knowing what you know you'll go through. The knowing of the struggle that awaits. The knowing that the life you planned is going to be totally different and will include excruciating heartbreak.

'My guts are different' is the only way I can really describe how I feel since Rowan's diagnosis. My heart, my guts, my cells.  All have changed. There are some things I just don't care about anymore.  I have had a change of focus and now appreciate so much I feel I didn't even see before.  I'm overjoyed by some of the smallest things Rowan does and by what may seem to others to be little
accomplishments.  Lately, for example, he's been going up on his knees when lying on his tummy. He tries to use his arms a bit more, too.  This is huge, my friends.  I'm so sad to share that I kind of gave up for a couple of weeks after we brought Rowan home from his first two hospital stays. He was so lethargic and was nowhere to be found...My baby boy was just gone. I thought that he'd remain sedated and limp- and I conceded. I wasn't giving him any credit for how his sweet little brain could process when not wrecked with seizures. I didn't have a clue what he was capable of. I sold him short.

Now, thought- expectations have changed.  He's in therapy and seems to be doing well. He's, of course, no where near where other one-year-olds are.  He can't sit up, can't talk, cannot grasp anything for more than a second or two... but he can change your guts.

I wonder what the future holds for our little boy? I am excited to watch him touch others and learn in his own way at his own pace.

I know one thing; he has made me an entirely different human being... and for that, he's the strongest person I know.

Does prayer really work?

Yesterday I went up to the 4th floor PICU at Sanford to visit a sweet little boy who's fighting for his life.  All day yesterday I prayed and prayed. I thought about him and envisioned good energy traveling in his direction. I asked other people to pray for him and I woke up praying for him.

It struck me yesterday, though- the fact that so many were sending love and energy to this child and that I was praying so wholeheartedly for him.  I felt good about doing it and felt like it was helping.

Most people who know me and who know me understand I'm not a religious person.
I've often wondered about prayer, though, and my partner and I discuss matters of the soul, the spiritual, and of a higher power often. We discuss whether souls exist, where souls might go if, indeed, they exist and what happens after death.  We talk about prayer and how it might help- or who it might help.

I've thought for quite a while now that prayer and meditation are things we do for ourselves that lift our consciousness to another level. To me prayer is aligning my energy with the person or situation I'm focusing on.  If I'm praying or meditating on a certain situation occurring in my personal life, I feel prayer sorts out the conscious and unconscious enough to allow an answer to come from 'somewhere'. Is it God, I don't know- and I don't care, for that matter.

I think whether there is or isn't a God is none of my business. It just doesn't matter.  What does matter to me, is love and is sending that love out to people. It matters to me to look within, because that's where the answers are. We already know the answers to most things...  And I'm not saying this in a narcissistic way, mind you. I'm saying that God is within...whatever this God thing is.

We know the answers and we can affect people in ways we can't even comprehend. I truly believe- I know- that all of the prayers that have come for Rowan and that are still coming help. I know there are people who pray for us every single day. I know prayer works... because we're all connected.

What's my point, you ask? I'm wondering how you feel about prayer and the power behind it.

Oh, and please pray for sweet little Lucas.  He could really use it right now...

Ouch

I really don't like creating a blog post without a picture in it, but since I've been too lazy to upload new images from my camera lately, this will have to do... (and a warning, that this post probably won't be super flow-y)

I'm sorry, I guess, for people who come to this blog and think I write about Rowan too much, or who get tired of reading about how I'm feeling... but this is really how it is, I guess, so it's what you get.

So much has been good lately; my relationship with Steve has gotten better and stronger, Lily is great and is an expert at using the potty, and Rowan's been healthy and seizure-free.

I realized the other day, though, that this won't last forever with Rowan. His seizures will start again- it's just a matter of time. I was telling someone it feels like I'm just waiting for the dropping of the other shoe.  Then this weekend I thought I noticed some more Infantile Spasms...

We adjusted one of his medications again and he seemed really happy this morning again, which was nice to see. I know we'll be fighting seizures forever.



I've been thinking about our little boy so much lately.  Those who know us know that Rowan's not the best sleeper. At all. In fact, he really sucks at it... So we've tried something a little different with him to try to get him to sleep better and so he doesn't wake Lily up: We put his mattress in our walk-in-closet and built a little pillow fort around it so he can't slide off.  He gets his space and Lily gets hers. We did this so we could try to re-train him to sleep without waking up every two or three hours to eat or to play.  He seemed sturdy enough to try this and it worked well for a week or so.  The past few nights, though, he's been pretty fussy and just can't seem to sleep for too long at a time.  I go in when he's crying at night and the look on his face is so sad to me- but I'm not really sure why.  I guess I just wonder what he's thinking or how much he understands. I hope he's not scared, is my point.  Not of the closet- but just of the dark and of lying there...

I was thinking last night about the day we found out, again, and was just so sad. I guess I'm just sad today... but a good thing has happened, I think.  A woman emailed me who lives in the area. Her daughter has a diagnosis surprisingly similar to Rowan's. Reading her blog broke my heart all over again... for her and for us.

Don't get me wrong, I see the good- I have to. I count my blessings and I try to stay positive. It's such a strange dance- the one with reality and hope and sadness and a positive outlook. I guess one just tries to not stay in one place too long- it's good to look at all sides.

My grandma and I talked the other day. She's amazing. She makes me feel like I'm doing a good job and I think the fact that she's proud of me makes me want to do better.

So again, I'll do better.

Adaptation

Sometimes when I look back on just how drastically our lives have changed since we found out Rowan has Lissencephaly, I'm amazed we've managed. Of course we had to first let the diagnosis sink in, which took quite a while for me. At first I remember not really believing it, I guess. And more than that, just trying so darned hard to not break.
Rowan was diagnosed on a Tuesday and I came back to work on Thursday of that week. I felt terrible for missing days only three weeks after I'd started in my role at The Forum.
Anyway, slowly reality crept up on me and I found myself crying at times I felt appropriate... In the car, mostly. I'd cry at home before bed, when I held him and saw him so fragile...
Today it seems a bit easier to digest; this huge life change. I suppose because he's doing so well lately.
Rowan has gotten so much stronger. He's holding his head up so well and loves standing up; with a lot of support, of course. I think he feels really good when he gets to use his muscles rather than just lying there.
He rolls over really well and isn't having any seizures at the moment. So, for the past couple of weeks I've been in bliss at the fact that he's not at the doctor all the time and seems happy.
Then yesterday we met with a respite nurse from Easter Seals. She's wonderful and we're so excited to work with her.  But- we met with a respite nurse.
I just can't stop thinking about that fact. It's a good thing, don't misunderstand me- but again, it's just more to swallow and more to adapt to.
I assume this is how life will go.

Life is good- we're very fortunate. Sometimes, though, I just don't want to deal with the paperwork, appointments, diet, refills on prescriptions.

We need to think about our living situation soon, too. We're in a condo that has stairs going down to it. We'll have to try to sell that- at a loss, of course, because that's just how things are right now, and rent a rambler until Steve graduates from NDSU.

What's my point today?? I'm not even sure. I guess it's just a day to let things sink in and to remember that, in the middle of it all, we're very, very loved.

And both of my children were happy as ever this morning- which means we're doing a good job.


P.S. Guess who's going potty in the potty chair?? 

Grandparents

I met with a Realtor today whom I consider a good person and a friend. We mostly talked about life and family.  She's recently gotten a couple of grandchildren and has two more on the way. It was really so nice listening to her tell stories and explain how she'd turned her lower level into a kid play land complete with an actual shopping cart.  It really is amazing how grandparents love their grandchildren, isn't it?
It's as if parents turn into totally different people once grand babies are born- or at least that's how it occurred to me watching my parents.  And I really can't think of a better way to describe 'the change'. My parents are great people- always have been. I love them way more than they probably know and consider myself to be extremely fortunate for the set I wound up with.  But they truly have changed since I had children.
Our children's grandparents and great grandparents' generosity when it comes to time spent, cards sent, and gifts given is astounding.  They'll drop almost anything to help us or to be able to spend quality time with the kids. And mostly they just want to watch Lil or Rowan do stuff.
It seems to me grandparents are happiest sitting down and watching kids play, listening to them tell little stories to their ponies, or to watch milestones occur.
My mom always says that when she's with the kids, she doesn't worry about a thing. She can forget about stresses, bills, arguments- she is just there with them. Time stops and she can watch the joy in big blue eyes and hear a chirpy little voice tell stories.
I love watching the grandparents with my children. I love watching my kids being so loved. We're lucky in that regard; that we are surrounded with fantastic people... It sure does make me want to be a better person.

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?