Wednesday, August 10, 2016

Fighting Fear: At the Balloon Festival

We don't tend to do things on a whim over here. Like, ever. So when Jer and I both woke up a few Saturdays ago and announced to each other we should take the kids to the hot air balloon festival we felt empowered.

We packed the kids in the car and made the trek only to be informed that the balloons were not at the festival. They were to return in the evening. We were encouraged to stay for rides and helicopter rides. We thanked the kind parking attendant who told us this before he took our cash, turned around and left. I felt enormously disappointed and slightly panicked. What are we going to do now? 

Jer suggested we grab lunch and take the kids to a park we love just another town over. My anxiety crept up slowly as Mimi began repeating the word "balloon" in the backseat. We pulled into the park to find a massive crowd of people gathered for a large children's festival. It seemed there were no parking spots in that tiny parking lot. We parked in a handicapped spot (we have a card for AJ) and I was still worried about him walking so far. My brain was so scrambled I wasn't tuning into the fact that we have a wheelchair in the backseat. 

We've only used the wheelchair for days when AJ is sleeping at school and is too incoherent to walk out of school when I pick him up. We also used it for a long trek during family photos. These distances may not be long for you and I, but they are for AJ. I haven't quite gotten used to remembering much less using it more frequently. 

Our detour that afternoon led us here:

We enjoyed a fantastic lunch with fantastic weather and headed home. Later that evening we one-upped our boldness and headed back to the balloon festival. As we drove along the main road and saw the mass amounts of people I felt that all familiar panic set it. So.many.people. Let me clarify that I am fine in larger crowds. My children are not. We were directed to a make-shift parking lot (a field) about a block from the festival. I noticed some people were sitting up on the hill in chairs so we made the decision to stay by the car and just hang out. Surely we'd see the giant balloons floating back down in the sky from there.

We parked and I realized it was time for AJ's medicine. One thing that I've never gotten used to is traveling with his tray of medicines. I'm not really sure why. Something about the absence of a counter or flat surface makes me, you guessed it, panicky. After giving him his medicine I sat in the car for a few moments to compose myself. Until I noticed AJ seizing in the backseat. After a cluster of seizures, I became completely unglued. Who does this?

After his seizures slowed I spread out a blanket next to the car and we waited for the balloons.

The balloons that never came.

For two hours we waited and waited and realized somehow we had missed them. Perhaps they flew in early? Two hours my sweet Mimi asked for those balloons while my anxiety shot up higher and higher. But after a while I began to witness and experience some things that were beyond the beauty of colorful balloons in the sky.

We had time just as a family.

Sweet precious time without any distractions.

Towards the end of our time in the field we walked down to the corner and saw the balloons bouncing up in the air a bit, firing just enough to make the balloons glow in the sunset. I was beyond disappointed that my girl, who can't see that far and loves balloons, was not able to see the hot air balloons. She needed to be right there in the front rows to be able to see the details of the balloons. Being in large groups of people causes her panic because she can't see what's going on. That much movement is very scary for her. So we chose to stay in the field. She couldn't see the tops of the balloons bouncing in the air because of her low vision.

I want so badly to give both of my children access to so many things because of their pasts. I don't want to give them the world by our culture's definition. Culture says I should buy them this because I didn't have it or do this because I didn't do it and want better for my kids. Culture tells me to do it all because we have access to it all. I want better for my kids in a different way. I want to give my children the simple and beautiful. I want to give my kids the opportunity to go to a local community event for free. To see something simple and beautiful. I wanted to see my daughter's eyes light up in seeing gigundo balloons in the sky. The simplest things make her happy. I want to see my son giggle and smile. I don't want my children to suffer. Anymore. I don't say that out of fear that they may some day. I know they will. I say this because they both have already suffered enough. This little trip to the festival seemed beyond simple. This wasn't a trip to Fiji. So why didn't it end up being simple?

I don't know.

But I do know that we did it.

We stepped out of our fear.

And I'm proud.

Tuesday, July 26, 2016

Fighting Fear

A few months ago I was sitting in one of our monthly Team AJ meetings with AJ's school team. As I was explaining his two most recent diagnoses (no executive function and little to no impulse control), one of his teachers asked for clarification of what those things meant.

It basically means he has no concept of right or wrong and doesn't understand consequences. It also means he has little to no control over his impulses. While the impulse control may improve a teeny-tiny bit over time, it will not be dramatic. Medication can help calm the impulses. However his impulse control will most likely stay static or consistently stay at the no control status.

"So what strategies did the neurologist give you?"

None. We cannot change brain damage.

"So what do you do when you go to Target or other stores?" the teacher asked.

We don't go.

When AJ was younger it took me weeks to work up the courage to go to the grocery store with him. His sensory needs were beyond and everything about the grocery store was overstimulating. This was beyond tantrums and tiredness and the typical hardships of taking the kids to the store. I was so anxious there was no way I would be able to concentrate on my list and actual make the trip productive. Even if it was just for milk, I wasn't going to risk it. The day we made a successful grocery store trip I was over the moon and felt like I had won the freakin' Olympics.

I've found myself in a similar, yet different place with this idea once again. I have become an expert on talking myself out of something by the next day or the end of the day or whatever it is. Because of fear. Fear is the biggest F-word in my life. Fear of situations I cannot control with a child I literally cannot control.

The risk evaluation is an important piece for me. No risk, no reward, right? Except in our case the risk can turn into a larger risk. I straddle the place of staying safe on the bus and jumping off the cliff with the rest of the group. Daily. Certain things must be strategically planned out. Other things can fly-by-the-seat-of-your-pants approached. But there is never one or the other, it always a combination of the two.

Grocery store shopping, or pretty much anything for that matter, now poses new challenges. AJ no longer fits in the cart. His brain will not allow him to stay with me if we are walking. He will grab everything under the sun without stopping. He will walk over the broken glass of salsa jars he's swiped and keep plowing on down the aisle. He cannot sit in the large area of the cart because 1. we live in times where what we did as kids is now considered dangerous and 2. he would impulsively dig into every single thing I would put in the cart. Many stores now offer these carts for special needs children. Our stores are not allowing these yet. If I take him in his wheelchair where will I put all the groceries?

The logistics alone are enough to numb me. 

I can do everything right on my end, but I absolutely cannot control his brain.

Add the fear and I'm done for.

Lately I've been thinking that we've got to take some risks. Maybe it isn't going to the grocery store just yet, but perhaps its planning out a trip to the library. Or going for ice cream. Maybe its giving myself grace to process the aftermath of the trip. Maybe its giving myself grace that its not my fault if the trip is a disaster. Maybe its giving myself to breath, rest, and then try again.

Friday, July 8, 2016


Ten years ago a tiny little miracle was born in a small clinic in Escuintla, Guatemala. He should not have survived. Almost nine years ago he came home to America. His body was in crisis-hidden to the naked eye. He almost didn't survive. The gravity and accomplishment of AJ turning 10 has had us in awe for the last week. Sometimes, words just aren't needed.

This is 10.

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