Happy Birthday to MJ (happy anniversary to us)

Happy birthday to our wonderful Michael! He is 10 today! Double digits! I can't believe it's been a decade! Funny thing... when I was pregnant with Michael a guy on my team at work asked about his name. I told him Michael Jene and he said "Oh! MJ!" which I thought--NEVER! But that was when I could only picture Michael as an infant. I totally call him MJ now 😋

Here are some of my favorite things about Michael:

He's very smart...always the top of his class.
He's handsome--brown hair and blue eyes, which is exactly what I hoped for with him!
He's funny








He's a great big brother. He especially loves to hold, kiss, and talk to Sophia (but he usually makes sure no one is watching, I think that's cute)

 Above is when Michael FIRST became a big brother :-)


He LOVES his friends and is very loyal.
And my very favorite thing is that my whole life I wanted to be a mother, and he made me one 😉

(also happy anniversary to us 😘. We got married on Michael's birthday bc it was the only day that made sense, but we knew we would celebrate our sealing anniversary every year instead. However today is worth mentioning because it does mark the time. 6 years!)

 

Our First Date, January 3rd 2011

 

Married May 7th, 2011

Sealed October 12th, 2012

 March 2017

And Lastly...Sophia Today :-)

*Crazy tidbit...see the picture of Sarah and Michael, and then the picture of Sophia and Michael (sophia in purple) above it? I didn't even mean to do that. THAT's how much Sophia and Sarah look alike!

Just Pretending

We like the show LOST. The main character, Jack, is a surgeon. Once he describes to Kate his first surgery. He was scared to do it and so for 10 seconds he lets the fear in. He let himself be afraid for 10 seconds....and then he lets go of the fear and goes to work.

Yesterday I gave Sophia a bath. Before I put all her "stuff" back on I tucked her feeding tube in (her outfit) and carried her outside. I showed her the tree Jason bought me for mothers day. I showed her my favorite flowers and enjoyed the diversity of our backyard. There was a slight breeze (good pretending weather) and for 5 minutes I just pretended. I pretended that she was healthy and that she wasn't going to die. I pretended that I really did get everything I ever wanted. I knew it wouldn't be healthy to stay in that place. But I allowed myself...for 5minutes....to just pretend. And then I had a good cry and went back to work 😇

Back to "Normal"

I sure am doing a lot of stuff that has me feeling like a nurse since Sophia was born. Working and troubleshooting different kinds of feeding tubes and systems, oxygen, heart monitors, etc.  Today I got to take Sophia's electrodes off. It was not easy but again, she was so tolerant. Three days was quite enough. Jason was sad every time he looked at her that way. I thought she looked like a cute little cabbage patch ;-)

So I dressed her up cute for when he got home from work. He was happy :-) And things are back to "normal" now.

I was worried all that glue was going to pull out her beautiful red hair...but I was careful, and I saved it!


We have to wait 2 weeks to find out what kind of seizures she's having so we can determine how to best help her.


There is a song by Sarah Bareilles titled "The Light". It's our song. We listened to it on our first date. Right before our first kiss (haha- there's an embarrassing little test to see if Jason reads my blog!). There are two lines from that song that keep coming back to my mind because they also pertain to how I feel about Sophia.

"Never mind what I knew, nothing seems to matter now. Who I was without you, I can do without."

Like with every child, once they're here, I can't imagine what it was like before.

She's growing up :-) She is getting fatter and longer, she's growing out of size one diapers (even though we just bought a whole case... naturally ;-). Her voice and her cry is maturing (not that she cries very much). And I think she even cooed today :-) I won't know for sure unless she does it again,
                                                                         but it  might have been something ;-)

Here's some more happiness:

 These little birdies brightened our spirits the other day :-)

And...do you remember running through the sprinklers (in your clothes) as a kid? I do. I did it a lot ;-)
Good times...

I Gave Her a Scent

A friend of mine came to visit after we brought Sophie home. She gave me a Burt's Bee's gift pack. Chapstick and lotions and creams and such. I placed a product at every sink and spoiled myself with that yummy scent, several times a day. It became a scent that I realized I would always associate with this time. So I took it a step further and assigned Sophia a scent :-) I bought her some Burt's Bee's baby wash and lotion and I put it on her every day. When she is gone I hope this will help me remember her. I love her so much.

 These two look SO much alike! Sophia is basically Sarah's little twin ;-)

Use my strength for today

Most days I feel pretty strong as I focus on the tasks at hand. I think of the rock climbing analogy. Someone at the beginning of all this, I can't remember who, used an analogy of rock climbing. If you look too far ahead or behind you'll be overwhelmed. You have to focus on just the few feet in front of you.
My Aunt called me and told me something similar. She counseled me not to use any of my strength worrying about the future or I won't have any strength left when I get there. She also said that love is the answer to this problem, the only answer. She was right on both counts :-)

Family Pictures/Home EEG

These family pictures taken at our house will be treasured forever. This first one I think I'm going to blow up on a canvas for sure. There's too many to put in one post so I'll probably post one or two a day for a while.

 

We got Sophia set up on a home EEG today. It took hours for the tech and I to hold her and glue electrodes to her head. She was a total champ. She hardly cried or squirmed. They will stay on for 3 days as well as a camera on Sophia. It's only a little weird that different techs from around the country can look into our home at any time haha. It's very sad looking, it makes Jason sad, but in my mind it's really good. This test will help us determine how to best care for Sophia. And that's what I want. I want to care for her the best I can. At the end I want to know I did right by her. That I did the best I could to help her have a good comfortable life. So I'm in a way excited about this test. And I'm grateful for the whole slew of professionals who are, have, and will help me do the best I can for my precious little girl.

p.s. that's not blood on her head or the electrode, it's just marker ;-)

Going back to the doctor that delivered

Today I had to go back to the doctor that delivered Sophia. He's a great doctor. But it was hard. The nurse left me in the room and I waited. I bawled and bawled terribly. I wondered if they could hear me in the hall. I couldn't help it. I was in the very room where I had my last ultrasound on the day we found out we were having a girl. I remember being so excited and looking up at that machine with so much hope and expectation. Hope that we were having a girl. Expectation that she was healthy. Words cannot express how hard it is to let go of the expectation of a healthy baby. I've never understood why some people say they just want a healthy baby when asked if they want a boy or girl. I mean we all want that of course, but I've always had an opinion on what I wanted to have. I do understand now.