Thinking Thanks

I'm sitting here wondering how to feel as completely grateful, thankful, and blessed as I know I am.

I have 3 beautiful children, a husband who loves me, a stable, safe home, food, family, and lots of love in my life, and most importantly a relationship with Jesus, the one who has my child in His arms.

I don't want losing Abby to define us. I want having and knowing her to define us.

I want to be grateful for her life. For every second we had her and what she still means to our family. I just wish I could take a deep breath without the pain of her absence filling me.

She loved Thanksgiving. The cooking, planning, and shopping are right up her alley. That excited squeal is missing. Those little fingers that worked so hard to pour, measure, and if she could manage to catch you with your back turned, knock over the bowl and anything in it. That was her favorite. She would laugh at the mess she made, and us.

Then there's this awful guilty part that recognizes how much easier it is. I can get a lot done, but I feel silly for having wanted that.

I'm going to do my best to have an attitude of gratefulness because I am. This is a year of transition, but I feel blessed for what we do have, and as much as I miss my daughter, I am thankful she isn't suffering. Last year she was so sick that she didn't enjoy it like she did before. That broke my heart too. At least she feels perfect where she is.

I love that line. Gratitude turns what we have into enough. What's incredible is that it also turns what's missing into enough too.





Happy Thanksgiving!

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Stores

I can't remember if I told this story before, but if I have, this is take two.

Hannah was 5 when Emily and Abby were born. Having them so far apart meant that Hannah would be in the first grade before the twins could theoretically even take first steps. They weren't exactly going to play with the same toys. At that time, I loved this Little Tykes seesaw. I wanted it for Hannah, but that didn't make much sense. When I found out I was having twins, this was the picture in my mind. Them, as toddlers playing on their little alligator seesaw. It seemed like so much fun, I simply could not wait!






Then they were born early, and everything started to change. I still held on to that picture. It wasn't the fun play thing it had been, but a desperate hope for their future. A daily prayer.

When they were about two, I finally realized and began to accept that my babies wouldn't sit up, and would never own or play on that little alligator toy. I tried to completely forget about it. If it didn't exist, it couldn't hurt.



As all good denial attempts usually do, that bubble popped. I walked into Toys R Us one day, and saw it. The dream. I sat on the floor beside the display and cried. I rocked that little guy back and forth and tried to imagine the girls on it. I couldn't. It was gone, and I cried a little more.

Yesterday, that all flooded back as I saw this in Target.




I almost turned around to show it to Abby, as I knew she would smile. She likes silly things. I remembered she was gone. My eyes immediately flooded with tears. Having had experience with break downs over goofy items in stores, I knew I had to move on quickly (I didn't even stop to take this picture, it's from the Internet). Surprisingly, I've grown a little over the years, and managed to walk through the rest of the Christmas section with only a few quiet tears.

I did buy this ornament because I thought of her when I saw it.




I had a tiny inkling that Christmas would be tough, but I didn't realize how much it would hurt. Their CP was nothing compared to her absence. I miss that kid. She loved to cook, and shop for Christmas, and wrap presents, and decorate the tree, and go to church, and tear those presents open with her little hands. How in the world will I live without that?



I love this picture of Abby at the tree. The wonder in her eyes makes me smile.



Abby concentrating on opening a present 2 years ago. It's amazing to me to see her so healthy, and to know that less than 2 months after this was taken she would be so sick in the hospital.

I really want to talk about other things, but she is still so important, and such a huge part of our lives. Even grieving her. I don't know how else to handle it, other than walking through it, and writing it out. It's my therapy. :)


 

Home

We came home today! It was a huge unexpected surprise!

Emily did well, but was very tired. Overall, we got a lot of good information, and mostly good news!

The staring episodes we thought were seizures didn't appear to be. She had some activity at night, and a few other things, but overall, her little brain looked healthy! That is SUCH good news. We haven't had better than expected news in a really, really long time. Thank you God!

We aren't going to mess with her meds right now. We'll see how many seizures she has now that we have a clearer picture of what they look like.

I'm thrilled to be out so soon. The kids are home from school tomorrow, so we have a day to relax and regroup.

We spent the evening picking the EKG glue out of her hair. I sent Jeff to the store for a fine tooth comb, and had to laugh when he came home with this from the pet isle.




At least it worked!


 

Doing fine!

Just a little note to say we're doing alright. It's completely different being here with a child who isn't sick. Emily feels fine, just bored. She's all hooked up, and itchy. I scratched my head as I wrote that.



She had a really hard time with the glue they used to hold the electrodes in place. She gagged and wretched the entire time they were putting them on. I felt so bad for her. When it was done, she was ready for breakfast :)

She did one of the things I thought might be seizure activity yesterday. I hit the button they gave me, and oh my!! The tv flipped off, a giant light came on, the door flew open and an alarm sounded! Scared the living kasnoodle of of Emily and me. Holy cow! We were just waiting for bars to fly down and lock us in. Seriously, that might scare seizures out of folks (maybe even me).

The good news is after we could breathe again, it actually wasn't a seizure! Praise God! Because some of her seizures are subtle, I'm not sure what is and isn't one. I didn't even think she was having them in the first place, so what do I know. Anyway, one less thing to worry about. She's also maintained her O2 sats, which I was concerned about. All in all, good news!

Check out that bed head!



I'm still hoping to go home Monday, so I hope they are able to capture what is seizures. It's hard being here, and Emily and I are talking about Abby a lot. Emily asked about her on the computer, which is a first. I think because she thinks of her being in the hospital. It's been nice to talk about her. Emily says she thinks of her everyday.



Me too :)