One week

I have a to-do list on the desktop of my computer on a little virtual sticky note. It reads things like "Fill out renewal Step Up Application" "Fax tax returns to Mortgage Company" "Write parent essay for AG Bell". As I finish something, I don't erase it...I cross it off, so that I can feel like I accomplished something.

This month has been crazy. The divorce, house stuff...every day life. It wasn't until I got an evite invitation the other day that it hit me that there were some imperative things missing from my to-do list. I opened the evite from my friend, labeled "Jeremiah's 3rd Birthday!" and read in the description that all Jeremiah, a little boy whose mom, Angie was pregnant right along with me three years ago, wanted nothing but a party with his friends for his birthday. Just a little party for the "babies" while the big kids were in school. Jeremiah. Fisher. Becca. Caleb.

Not being able to write Eli's name next on that list is harder than I can tell you.

I love those kids. A couple of years ago I wouldn't have been able to tell you that without lying, with the exception of Fisher, who has always been a balm to my soul. Babies were trouble. Seeing their faces only reminded me of what I had lost. I wondered why their parents got to keep them, bring them home, celebrate their birthdays, and I didn't even get to see Eli take a single breath.

But now, these kids have become people to me, wormed their way into my heart. Jeremiah will sit in the most uncomfortable positions just to be near Vivi, who he calls "Seth's baby sister." He and Becca and Fisher fight over who gets to be the one to hold her pacifier for her. When Seth's magnets fall off his head, Becca says "Oh no!" and rushes over to replace them for him. When I pick up Fisher from his preschool, he comes running to me, excited, calling out "My Ellyn!"

They're people. They have ideas, and they think jokes are funny. They have reached the age where they actually play together and think of themselves as having friends. They're not babies anymore.

I want to be stressing out over a to-do list that has different entries, or, if not that, at least some extra ones. "Buy Balloons." "Get Ice." "Pick out party decorations." I want to be asking Eli what kind of party he wants, who his friends are, telling him knock knock jokes and listening to him crack up laughing. I want to pick him up from preschool right along with Fisher. I want to tell him to leave his baby sister alone and to be nice to his brothers. I want to still be married to his dad, still be a complete family, and I feel like if he hadn't died maybe we would never have headed down the path we did. In all truth we've been a broken family for three years, not one.

Instead we're planning a day at Busch Gardens, a breakfast out, cupcakes. Better than nothing, but still, it's cold comfort.

This month has gone by so fast, but I'm not ready for this week to go by, for Sunday to come, to start Eli's fourth year without him. While I feel like I am blessed beyond measure, this part is always so hard.

Cousins, Sisters, Friends

I don't know if I've ever told you guys I'm an only child, but...I'm an only child!

Most people in my life would say that they figured that out already because I am probably the classic only child. I was pretty spoiled and I have always liked getting plenty of attention. I had seven years on my own before my cousin Logan came around and my grandparents spoiled me rotten.

Our family, though, was always very tight knit growing up and I had cousins both older and younger than I was that I spent lots of time with. As we got older though, we stopped hanging out as much and it wasn't until a few years ago that Logan and I started making a concerted effort to stay close again. Since then, I've visited for a few weeks every summer and she comes to spend time with us on her spring breaks. (Usually her sister Jordan is involved too, but she took off to Brazil for six months) We eat a lot of ice cream, make terrible jokes, drive around a lot, line dance badly, act like dorks, and basically have a great time doing not much of anything. We talk about important things and silly things, boys and bible verses and whether cherry limeades are strawberry limeades from sonic are better. This year, we've made a new resolution to talk on the phone every week to stay caught up.

Tonight, Logan and I were playing a heated game of Deal or No Deal at the arcade, and afterwards we were spending our winnings at the coupon counter. I picked out a deck of cards, and as we walked down the street, Logan said "Should we split the deck of cards when I leave as a symbol showing we're not whole when we're apart?"

We both cracked up laughing and went on and on about how we'd both end up sitting at home trying to play solitaire with half a deck of cards and lamenting how we just never seem to win, and in the end we were sitting in my car bent over holding our sides laughing about that and who knows what else. But on the way home it hit me.

I'm so happy that we've put the work into staying close to each other. How blessed we all are to have each other as we grow up and get older.

Without you around, Logie, my deck of cards would be woefully short.  I love you!

Who's someone in your life whose presence helps you win solitaire? =)

Beaching it up

I'm still cold.

But it was totally worth

Freezing our feet off

to spend this time on the beach

running around

forgetting our troubles

and singing country songs




I love this.

Sugar needed

When Seth first began walking, he had that adorable drunken sailor gait that most babies have. He'd walk along and then, at the drop of a hat, he would fall as though an invisible hand had shoved him aside. We all thought it was typical new walker stuff.


On the way to therapy today, we ran into a friend of ours whose daughter also has Cochlear Implants.  He was asking how Seth is doing and, as I gave Seth a boost so he could push the elevator button, I laughed and said "Oh, he's doing great! If he could just graduate from physical therapy life would be good!" We both laughed and he said "I'm sure it'll be soon, he's doing so good."


I wish I could go back to that moment, because I totally agreed with him. 


See, the thing is, as the weeks have gone by since Seth has been an official walker, he's improved in lots of ways. He doesn't hold his hands up for balance anymore. He doesn't rush headlong into things or tumble over his feet. He walks carefully, stopping often to regain his balance. He's not reckless, he thinks. 


But he still falls. No matter how careful he is, that invisible hand still knocks him over regularly. To deal with it, he's adopted a wide stance, feet farther apart than his hips, like a sailor. Walking is not effortless for him like it should be by now. 


And, as I learned today, there is a reason for that. As soon as we got in, his therapist and I sat down to discuss his latest tests and evaluations.


Seth has something called ataxia. It's basically a disorganization of voluntary gross motor movements. There are a ton of different kinds, some of which are degenerative over time, but for us to find out the exact etiology, he would need an MRI, which is a big no no with implants. His case seems to be fairly mild, so right now we're just trying to focus on what to do to help him deal with it. Ataxia can affect walking, arm and hand movements, speech, and even the eyes. For Seth at this point, it seems to mainly affect his walking and balance. 


His therapist was great today...we laid out a whole new plan for his therapy and started using a weight belt on him right away, which made a big difference immediately. After we put it on him, he walked all the way around the center without falling once. For some reason the weight helps his balance considerably. 


Of course, the downside is that now there's going to be one more piece of equipment to put on him, to cart around. Something else he's going to have to deal with. Something else to make him look different than the other kids. It could be worse. It could always be worse, but today I'm feeling pretty sorry for myself and for Seth. I felt like we were exiting the tunnel, and now I feel like we're backsliding into the dark all over again. I thought we'd be out of therapy soon, and now we're looking at being in it indefinitely. 


And I feel like such a whiner when there are kids dying and hungry and I'm all upset because my kid has some balance issues. But sometimes it doesn't take much when you've made lemonade over and over again...I'm sick of it. I don't want to anymore. I want Seth to be normal, not have to compensate for so much. This isn't fair. He's such a trooper...I just wish I could do this for him. 


When I'm done holding a pity party for myself here, I'll go and I'll order him his own personal weight belt and probably decorate it in some silly way. We'll do all the work we need to do to help him overcome this, too. In a day or two I'll laugh and say that it's nothing we can't handle. I'll remember that I'd rather have a deaf baby with a balance disorder who hears with CIs and walks like a drunken sailor than nothing but pictures to look at, year after year, of a baby I'll never get to hug again. 


This is better. But in so many ways, Seth's issues have been harder to deal with than Eli's death, because they just keep coming and he just has to keep dealing with them. Eli (as far as we know) was never in any pain. He never had to deal with the amount of things Seth has had to deal with, all the issues he's had in his 20 short months of life. I'm so proud of Seth, for just taking everything in stride, being such a happy little boy, in spite of how much harder he has to work for things. To listen, to talk, to walk. 


So tomorrow, I'll look for the silver lining. I'll dig the lemonade pitcher out of the cupboard. Tonight, though, I'm just sad that I have to find some more sugar for these lemons. 

Spring Break!

Logan is here! Her flight didn't get in until late last night, and I've been sick the past few days, so posting got pushed aside yesterday.

For those of you who haven't "met" her, Logan is my cousin. I'm an only child, though, so she's much more like a sister to me. She's on her spring break from her college and she's here to hang out with us.

We've been up late chatting, discussing LOST and country music videos, and having N Sync dance parties with the kids. It's been a pretty amazing visit so far, and we're only 24 hours in!

It's especially cool to have her here with us this year, because this time last year when Logan was here, we got Seth's insurance denial quickly followed by the insurance approval for his surgery.  It was a pretty amazing week, and it feels like it was both yesterday and a long time ago. Tonight, seeing Seth jump around to the music and that this time last year we were just starting to actually believe we'd be able to pull off his surgery, still wondering whether it would even work even if he had the surgery ...it's just an amazing feeling to see how far we've come.

We're getting ready to settle in and watch LOST...anyone have any theories to throw our way?

Speechless

A post about Seth is below, but I had to post becuase...I am really surprised right now. I had to write to tell you that I'm pretty sure I have the best friends a girl could ask for. Real, amazing, awesome, sneaky friends. 

I'm overwhelmed and blown away and so, so grateful. I am so blessed beyond measure. 

To see what they've been up to, click here or here. 

I would kiss you guys if that wouldn't make our respective relationships even more inappropriate than they already are. Suffice it to say that I love you!

Keep an eye on this one

This kid is trouble.

Case in point: He surveys the area. 

Is anyone looking at me?

All Clear. Go for Cake.

Uh, Oh. I think she saw me.

Maybe if I look coyly off to the side she'll be distracted by my disarmingly good looks.

Oh yeah, I totally pulled that one off. I am incredibly pleased with myself right now.