Tuesday, May 28, 2013

Dance Recital in a Different Way

The other night I fell asleep reading a book to Lilli. I guess we both fell asleep at the same time. We were all curled up together, with the light on. I woke up to the slightest teeny movement. Lilli was having a seizure. And this is why we do things differently around here...even going to sleep. We do a lot of things differently. I used to cry about it. Now I can laugh about it. Well, only sometimes. That's a lie, I still cry about it too. I guess I'm just getting more used to it as the years go by.

I really don't know if I sleep deeply anymore. It is something that happens to a mom when there is a newborn around. At first, you wake up at every sigh and sniff that comes over the monitor. Over time, most moms begin to turn the volume down. And eventually, the monitor collects dust, and ends up in a yard sale. That's what happened with Chloe, and then Josh.

But not Lilli.

I don't know that we will ever not monitor Lilli. It seems like whenever we start to loosen up a little because she has not has a seizure in awhile, she has a seizure. And we are back to being uptight again. This cycle has been running for, well, nine years now. We have learned to live with this, but we both could use a really good, deep night's sleep. If our bodies even know how to do that anymore. I am not complaining. Just explaining why we may seem uptight or exhausted sometimes. I try not to talk about it. Everyone is tired for their own reasons. Lots of people don't sleep. Right? That's what I tell myself.

Tonight was Chloe's dance recital. Chloe is six, and needs to do what other six year olds do. There is so much that is "different" about our home life. For example, we keep having to explain to Josh that Lilli's ABA therapist does not actually live here. (When she pulls up, he runs to the window and yells, "Morgan's home!") So we want to try and make some things "typical" for the kids as they grow up. Even though the logistics are not always easy, Chloe has taken dance class for the last two years. And the recital is obviously the special event at the end of each year.

At the playground before one of Chloe's dance classes. 

Months ago, I started to plan for this one night. I have to plan like this. I knew we would not take Lilli or Josh to this recital, although it crossed my mind. But no, this night was about Chloe, not about keeping Josh quiet or Lilli happy in a dark auditorium. However...we have babysitting issues.

We cannot have just any regular person babysit Lilli. There are so many reasons why. We feed her, bathe her, she is still potty training, (that is my positive way of saying she needs to be changed, and we don't want just anyone changing our nine year old) she cannot talk, so the person watching her needs to really know her and understand what she needs and wants.

But the biggest reason is of course, her seizures.

When we leave Lilli with someone, we have to explain to them what to do if she has a seizure. That involves giving her emergency medication, which is administrated rectally so that it can go into the bloodstream immediately. Yes. Read that sentence again. Its purpose is to stop the seizure. Sometimes it is not needed, if the seizure is short. Sometimes it is needed for Lilli, because the seizure does not stop. Many times in the past, it has not even helped at all. The whole reason why we moved here and changed our lives has to do with this medicine sometimes not working. One day soon I will tell you that story.

Imagine how awkward that is to pull out a sheet of directions with pictures explaining how to do this. But we have to. We can't take chances. This is the biggest reason why we can't just have any babysitter for Lilli. It has to be someone that can take all of this in and be OK with it. It is a lot to ask of anyone.

Not your average instructions for a babysitter.
(I have to add an aside here, and say that the oddest things can connect special needs moms. I made a new friend once because I noticed she was holding one of these medicine packs. I saw it and instantly knew that this stranger lived the same rarely talked about life circumstance that I did. I walked over to her and introduced myself because of that medicine. She was holding it for her son. We became fast friends.)

We used to qualify for nursing care. That made it easier to leave Lilli and have peace of mind. But we don't qualify anymore. Lilli has a lot of needs, but not enough for a nurse. So we asked a trusted person we know - one of the only non-family members we would leave her with - over two months ago if she would watch Lilli and Josh for this one special event: Chloe's dance recital.

Jasen and I talked a lot about just how long we would be gone. Leaving Lilli for any length of time is often stressful for us. Most people are happy to get a break from their children, for a date or special event. We are happy for a rare break, but then... we worry.

The morning of the recital, I drove by myself almost an hour away to a church volunteer event. It was amazing, for two reasons. One reason was simply because... it was an amazing event. But the other reason was because I got to be just me and not worry about anyone else for about five hours, because the children were with my husband. It was a blessed escape.

When I got home, things were in their normal full swing. Lilli was working with a therapist, Chloe was playing store, Josh was...being his three-year-old-boy self and bugging his sister.  I was just starting to fold some laundry when I heard the therapist shout, "Seizure!!"  I yelled, "Seizure!" to Jasen, who tore around the corner and grabbed the emergency seizure medication we always keep on a table in the same spot. He bolted by me and flew down the staircase.

Lilli had been downstairs reading with the therapist. Jasen ran down the steps, grabbed Lilli, and ran back up the steps carrying her.

Afterwards, as the three of us looked at Lilli and tried to figure out what set that seizure off, I looked at Jasen and said something about getting ready for the recital.

"Well, I don't think that's going to happen for me now." Jasen said, his eyes still on Lilli. "How can we leave her now? The last time she had a seizure like that, she had another really bad one a few hours later."

I remembered. I didn't say anything, and I thought about it. Both of us wanted to go. Who was going to make the sacrifice and miss seeing sweet Chloe dance her big moment on stage?

Then, I had an idea. I explained the crazy plan to my husband. He listened, and slowly agreed that we could probably make that work. I went back to getting Chloe ready for the recital, wondering how it would go.

At 4:00, I left with little Chloe, hair in a bun and pink tights and all. Jasen left twenty minutes later in the van with Josh, Lilli, and the babysitter. They pulled through McDonalds and got Josh a rare treat - a happy meal to keep him busy in his car seat. Ten minutes before the show started, they pulled in and I met Jasen in the parking lot. He was carrying Chloe's surprise rose.

I had saved two seats down front. We slipped in right before the lights went down, and Jasen texted the sitter out in the van in the parking lot to make sure the last five minutes had gone OK. The plan was for her to text or call us if Lilli had a seizure, and Jasen could dash out to her in the parking lot and be by her side in seconds. It was a little unconventional, having our kids be babysat in the van in the parking lot for a few minutes, but it was the only way we both felt safe to attend the recital. We would only stay until Chloe danced.

Chloe was the third group to dance, and Jasen watched her with his phone in his lap just in case, while I videoed Chloe with my phone. As soon as she was finished and the ballerinas did their little tiptoe-run off the stage, Jasen and I slipped out a side door.

We met Chloe in the room where all the other dancers were, and Jasen gave her the rose. I took a picture of her with her daddy, and then Jasen said good bye. He left to go back to the van where our other two children were with the sitter, happily watching a Sesame Street movie.

I would not say a picture is worth a thousand words for this one. You can't tell what is going on behind the scenes.

We'd made it through. No seizures. Total time together in the auditorium was I think twenty minutes.

Chloe and I snuck back in and watched another hour of dancing. She snuggled on my lap, still in her tights and ballet shoes. I don't even think she knew about any of that behind-the-scenes-craziness. And that's a good thing. She doesn't need to know all of that. She only needed to know that both mommy and daddy came to see her dance recital.

I don't like to use the words "always" or "never." We don't know what God can do, and sometimes the seemingly impossible can be made possible. But there are just some things I think it is safe to say "always" about. I am pretty sure that we will always need other people in our lives to help us with Lilli. It will probably change over time, how people help her and how they help us. Maybe one day, we will be able to take Lilli certain places that we have not been able to take her. Until then, we depend on others to help. And I am so thankful for all of the helpers God has put in our lives. I depend on all of them so much. If someone can't come to help me, it usually changes our plans for the day. If someone can't help with Lilli, it often affects whether we do certain activities as a family. I am thankful for the help, and sometimes worry about what will happen when certain people move on and cannot help us anymore. But then I remember, God knows what we need, and He will put someone else in Lilli's life to help her.

And we will just keep doing things... in a different way.


  1. You are such an awesome person :)

  2. This one made me cry again . . .You and Jasen are truly amazing parents. That is all. : )
    Lisa Bishop