special needs

Day 60 – The Two Most Important Things We Can Do in Times of Trial

On August 28th, my wife lost her job. 24 hours later, I lost mine. This blog is a continuation of the day-by-day chronicling of our emotional journey back to employment. This is bound to be upsetting, hilarious and hopeful.

Tuesday – October 28, 2014

Our biggest trial. And yet, I look at this picture and I wonder how that's possible.

Our biggest trial. And yet, I look at this picture and I wonder how that’s possible.

I needed today in a big way. Without fail, it is those days I get out of the house to visit and serve others that I am most the most calm and optimistic about my own situation.

Case in point: I went three hours without fidgeting. I am a big time fidgeter. In the fidgeter olympics, I medal every time. I think it’s just because my mind is always working, usually in overdrive. Fidgeting, changing my position in my seat, biting my nails–all of it helps me to focus on the task at hand. Or at least it seems to.

Tonight, while out visiting with families to assess their needs with the Bishop, I just never felt the need to fidget. I sat and listened carefully to the conversation with nary a switch to my crossed legs or a tap of my finger. I was in no hurry to leave at any point and I enjoyed the visits immensely. It was glorious.

Just before our last visit was over, I got a call from Erin in a panic. Two of our friends had just been in a serious car accident. Their truck rolled three times but, miraculously, they were just fine with only a couple of scratches and a completely totaled truck to show for it. Understandably, they were, sure, grateful to be alive, but also freaking out. Their truck was gone.

It was more than fortuitous that the Bishop and I were together. We headed their way quickly to find them frazzled and angry and upset and lost, as any of us would be. They wanted a blessing, which we were pleased to give, but also just to talk. They couldn’t see how their lives could accommodate this disaster. It wasn’t just a truck. It was a vital part of how they conducted their day-to-day lives and a financial obligation they had to meet despite the fact that the actual truck no longer existed. They were facing complication upon complication upon complication.

One of the things I said that either helped or didn’t was that I felt a lot of the same things right after I lost my job. Even as I was being let go, I couldn’t help but have grand, terrible visions of losing our house and not being able to feed the kids and panhandling on the side of road and splitting a chicken nugget between the five of us with a now-useless credit card. I thought of every awful thing the future held for us, and more besides. And the more I thought about it all, the more anxiety I had. All was darkness. I couldn’t see a any way out of our previously unfathomable situation.

I told my friends I did two things to help myself make it through:

1. I stopped projecting past the present.

This is a trick we learned with Cami, our middle daughter with special needs. After six years of testing and worrying and struggling and no more answers about who Cami is and what is wrong with her little body and mind than when she was first born, Erin and I finally just decided to stop thinking about the future and to let go of the past. We couldn’t reverse all the hundreds of hours spent with doctors and the expensive tests and the heartache of coming to terms with having a daughter with special needs, and we couldn’t contemplate what her future would look like–whether it be in a home with other people like her or at our side as we cared for her for the rest of our lives, or even if she would ever be able to talk to us or have a relationship with a man or live into adulthood or any of that–so we decided to ignore all of that in favor of the present. The present, which is far more singular in nature, can be dealt with much more easily than the disappointments of the past or the endless, difficult-to-comprehend possibilities of the future. In the present we found so much joy that we hadn’t known was there all along. As it turned out, Cami was a deliriously happy kid, and we had been missing that. And the things we had to do to help her through her life? They didn’t seem so bad when we just took them one at a time and ignored the rest. We found Cami, the real one, by doing this, and we actually got to know her. Likewise, when I lost my job, the magnitude of the responsibilities that now lay ahead for me seemed too impossible to handle. But when I broke it down into “today, I will apply for unemployment, follow up on some job leads, and spend some extra time with my kids,” the task of finding a new way to support my family and surviving the time it took to do so didn’t seem so bad at all. It actually seemed quite nice.

The present is always a more pleasant place than we give it credit for. The problem is we weigh the present down so much with the future and the past. It’s not built to really bear those burdens. When you don’t let it, the present starts working for you, not against you.

2. I reminded myself of all the times I was down so low I  thought I might never get up again and yet I did anyway.

Experience doesn’t do us any good if we don’t learn from it. How many times in our lives have things seemed hopeless only to turn out quite differently from the negative outcomes we imagined and believe in wholeheartedly? Obviously, not every bad thing turns out well in the end, but enough do–I would argue the majority do–that we should give positive outcomes more of the benefit of the doubt. All those impossible ordeals I’ve been through? They’re just a memory now, something for me to reflect on and grow from. I never thought I would, for instance, find someone to marry. I was terrible at dating and insecure and had never even kissed a girl for a long, long time. I thought I was hopeless. I truly, genuinely did. I thought relationships with the fairer sex was one of those things that I just didn’t–and would never–get. And yet here I am, all of that past me. It’s just gone. It’s better than gone, it’s actually reversed. I didn’t just find a girl, I found the most beautiful girl in the world and trick her into marrying me and having kids. The proof is in my wedding ring: we make it out of bad situations all the time.

I encouraged my friends to believe on their past and look forward to that future where all these matters were settled and they were taken care of. That’s a difficult perspective to have especially in the middle of a trial, but it’s important to have it.

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Day 22 – This Whole Life is a Storm

A brief note: Apologies to those of you who subscribe to this blog for the shenanigans of the past few days. I’ve gotten a few enties mixed up and posted some early by mistake. If you got an email for a blog that is not longer there, don’t worry, it will be back. Again, very sorry. If you’re reading this and want to receive notices in your email every time there’s a new post, please click on the “Follow” button on the right. Thanks!

On August 28th, my wife lost her job. 24 hours later, I lost mine. This blog is a continuation of the day-by-day chronicling of our emotional journey back to employment. This is bound to be upsetting, hilarious and hopeful.

Friday – September 19, 2014

Elora and Cami

Elora and Cami

I had the privilege of accompanying Erin to EPU (a non-profit helping families through the first few, rough years of having children with special needs) today to hear our oldest, Elora, speak to a group of adults about her experiences as Cami’s sister. I was the only male there. EPU stands for Exceptional Parents Unlimited, but if the place was honest it would be called Exceptional Mothers Unlimited, or EMU. But then it would be named after a flightless bird native to Australia and I don’t think they want that. So they pretend guys come there, too.

This was actually the second time Elora went to EPU to speak about Cami. The first time was a year earlier, when she was 10-years-old. Elora is a pretty composed kid. She was introduced as “11 going on 30” and that’s about right. I’d have been scared to death at her age to speak in a room full of intimidating adults, but for her it’s nothing. My theory: her glasses are X-ray specs and her high level of comfort and security with herself comes from seeing everyone in their underwear, like, all the time.

It was sobering to hear the past 9 years of our lives from Elora’s perspective. I didn’t know this, but it took her a long time to process that Cami has a disability. We never hid the fact from her, but it’s hard to know what your kid understands and doesn’t understand. She said she didn’t fully get it until just a few years ago. I’m actually kind of grateful for that.

The love Elora has for Cami runs quite deep. We find that people form a bond with Cami pretty easily. She has a quality about her that invites you in. Her spirit is deeply felt, even if you don’t always understand her.

Cami’s body holds her back for, I assume, a wise purpose. My beliefs encompass that idea that Cami’s spirit is too pure to be tainted by the world, and that she is here less for her experiences on this Earth and more for the benefit of the rest of us. She is innocence, pure and unaffected by her circumstances, just as so many of her peers are. Cami and others like her aren’t just special people, they’re essential people. I truly believe the world would be quite a bit darker without them.

I thought a lot about the next life as I listened to Elora speak. I believe that it’s then that we’ll finally get to know Cami fully. She’ll talk with us, person-to-person, and tell us all about her unique perspective on things and her memories. This both excites me and freaks me out. I want to hear from Cami, but will she remember things like the time I looked away for a second and she rolled off our high bed and landed on her head?* Will she judge me harshly for those times at dinner when I am weak and yell at her, after thousands of meals, for not being able to eat properly and making a mess? Or will she focus instead on the times we went to the grocery store together or played on the living room floor or the kiss I give her each night before tucking her int?  From what I know of her (and I like to think I know her very well), no, she won’t judge me too harshly. Her spirit is loud and it is pure and I don’t think she possesses any sort of guile that could possibly manifest itself in the next life or any other.

*Cami had an MRI already scheduled for the very next day. I’ve never been so nervous. Thankfully, everything checked out.

So, when I look at Cami, I see a temporary situation. Our lack of communication is a blip compared to the eternity of continual fellowship in front of us.

How much more a blip, then, is this current trial of unemployment? There’s no unemployment in the next life. I’m sure we’ll have our worries and concerns, but that won’t be one of them. I know this is a far away idea, but sometimes when you’re in the midst of something it can seem like it will never end and it helps to remind yourself that that’s simply not true.

Unemployment does not compare to the struggle we had coming to terms with who Cami is and it isn’t cancer and it’s not living under a military dictatorship or having each day’s primary goal being the fetching of water, but it’s just as temporary. It’s good to remember that just about everything ends, all the trials and tribulations of this life–even your first and second worst nightmares. I talked about storms the other day, and how they pass. The truth is this whole life is a storm. And it will pass. And then we’ll see and understand.

Day 13 – The Second Worst Nightmare Come True

On August 28th, my wife lost her job. 24 hours later, I lost mine. This blog is a continuation of the day-by-day chronicling of our emotional journey back to employment. This is bound to be upsetting, hilarious and hopeful.

September 10, 2014

Erin was laid out sick today, so I had to step up for the sake of the kids. I’ve done the single dad thing before, for up to a week at a time when Erin has been out of town.This was fine because I like my kids. I like playing with my kids. They happen to be the very best kids.

The only difficult thing was that I was trying to get two big projects done at the same time I was managing the house: my online portfolio (which I finished) and a writing sample for a marketing freelance gig that I might just be right for. Violet didn’t care about any of that. She just wanted to play “hotel” in her bedroom.

The only hiccup was when I forgot about Elora’s orthodontist appointment. Thankfully, the office took pity on me (no, I didn’t pull the ‘lost job card’–I pulled the ‘sick wife’ card) and rescheduled for later in the day. My penance was dragging all three kids to the office and trying to wrestle Cami, our middle girl with special needs, into staying in her chair and not sitting on the dirty waiting room floor. For some reason, she loved that floor.

After resting all day, Erin felt just well enough to make a speaking engagement in nearby Reedley to share her journey as a mom to a child with special needs–she does this about once a week or so. Because she’s great at it.

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Cami, with the rest of us.

This reminds me of something Erin told me the other day. Before Cami was born, her worst nightmare was to have a child with special needs. She said this on numerous occasions. Once, while Erin was pregnant with Cami and a friend joked that it was statistically possible–probable, even–that someone in our family would have a child with special needs and that that child could very well be the one Erin was carrying, she completely lost it. Privately. Later.

Then Cami was born.

Nine years and a lot of pain and heartache and coming to terms later, and Erin admits this was always her second worst nightmare scenario–that I would lose my job. My job was the one that sustained us. That allowed us to buy a new minivan when the kids got too big for our car. That put us in our house. That put food on the table and the kids in clothes.

What we couldn’t (and, to be fair, wouldn’t) see when Cami was born was that our lives would be immeasurably blessed for having her. There have been so very many blessings, but the big one that immediately come to mind is that Cami, through just the very spirit she brings into our home, has allowed peace to reign. Our kids don’t fight, ever. Because of the struggle we’ve had with her, Erin and I have increased our likelihood of divorcing to 80%, but instead we’ve pulled together in a way we might not have otherwise. Years of difficulty and struggle have brought us to a truly beautiful place in both our marriage and within our family.

I think having lived through one worst nightmare is helping quite a bit with this second one. We’ve been through storms, this is just another. There are solid benefits to struggle, we all know this, but in the moment–and I’d say the past twelve days have been a very big moment–it can be hard to remember that. But what I see happening is our processing and recovery time shortening. I see us bouncing back faster and stronger. There are still days and minutes of panic and difficulty, but they don’t debilitate in the long term as they once might have.

Because storms, you see, pass.

She Gets All the Candy She Wants

Cami’s our best eater, but she refused her food at dinner tonight. Not verbally, of course, because she can’t talk. She just shoved it away. I shoved it back at her and she pushed it back at me so hard I thought it might fly out of my hands. We went back and forth for a while before I finally noticed she was pointing at something insistently. I gave up.

“Fine, Cami, what is it you want? Get up and show me.”

She did. She carefully climbed down from her chair at the table and walked over to the phone, where we had stacked all the presents we’re giving to the girls’ teachers tomorrow. She pulled down the shiny, orange one. A small purse. Earlier that day Erin put a bag of M&Ms inside. I pulled out the M&Ms and asked Cami, “Is this is it? Is this what you want? You want candy for dinner?”

Cami smiled her big, toothless grin and shrieked for joy. I told her it wasn’t gonna happen. That candy was for Elora’s teacher. She insistently stabbed at the bag of candy with her index finger and happy shrieked some more.

Not knowing what else to to, I offered Cami a deal. She couldn’t have the M&Ms, but we did have a miniature candy bar I could give her–but only after she ate her dinner.

Cami looked at me intently, making the kind of eye contact she offers up too rarely. She grabbed her fork, swung her legs under the table, and began eating. A couple bites later, she pronounced herself done by putting down the fork and looking up at me expectantly. The big grin came back.

“No,” I said. “You have to eat the WHOLE dinner.”

Again Cami picked up the fork and started eating. Now, she was chowing down.

I turned to look at Erin, whose jaw sat slacked. I asked her, “Did I just have a conversation with Cami?”

“I think you did,” she said.

Cami ate and ate until all of her chicken and her beans and her rice were completely gone. When she was finished she pushed her plate away and walked over to where she knew we kept the mini candy bars.

“Okay, Cami,” I said. “I’ll get it for you.” She turned around and went back to her seat to patiently wait for me to unwrap the bar. Erin and I, and Elora for that matter, didn’t even know how to process what had happened.

I grabbed Elora’s teacher’s gift, ripped the bag of M&Ms out of it, and poured it into a bowl.

“Tonight,” I said. “Cami gets all the candy she wants.”

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Spreading the Word

IMG_0735Elora was upset. A teacher at school had used the R-Word in the classroom as a way to correct the kids who were doing an activity incorrectly.

“No, not like that! You’re not supposed to do it all retarded. Don’t act like a bunch of retards.”

Elora’s little sister, Cami, has special needs. Elora is particularly sensitive to the R-Word because of that, but hearing it come from the mouth of a teacher shook her up pretty bad. She told Erin and me that she hears the word on the playground all time. It bothers her, but they’re kids and kids aren’t known for the senstivity. But a teacher? How does that happen?

Here’s thing about the R-Word: getting mad about it doesn’t do any good. Most people who use it don’t understand the damage the word causes, so gently informing is always the better response. We didn’t want to call up the school and demand action be taken against the teacher or yell at the Principal. That wouldn’t do anything to actually fix the problem. And there was a problem. A big, school-wide one.

We wrote an email to the Principal instead, expressing our distress, but also our interest in doing whatever we could to help raise awareness at the school. In an impressive display of leadership, Principal Yang didn’t just send back apologies, but asked to meet with Erin to talk about what Miramonte Elementary could do to help their students and teachers be a bit more sensitive towards those with disabilities.

A few months later, on March 18, 3013 (Cami’s birthday, coincidentally), Miramonte held a Spread the Word to End the Word assembly. It was incredible. Many students came up to read their pledges and some high schoolers led everyone in a chant to SPREAD THE WORD/END THE WORD.

I regret I didn’t record the whole thing, but here’s the featured speakers, Elora and Erin, talking about Cami and what’s so bad using about the R-Word–even when you’re not referring to a person directly.

I think they did an incredible job. Many of Elora’s classmates came up to her afterwards and pledged to stop using the R-Word now that they knew better. If you’d like to take the pledge, please check out the End the Word site right here.

Cami, Realer Than Real

There are saints among us–good people who do a good work because it’s good to do. Goodness can be and is the greatest reward, but it’s not often the motivator it should be. Not so with Sweet Nectar Society, an organization that, in its own words, “brings together a network of talented photographers throughout Central California for one important mission—to capture the hope, courage, and strength of children undergoing treatment for serious illnesses, disabilities and injuries, and provide their families with lasting memories.”

Basically, they take gorgeous, realer than real pictures of children with special needs and gift them to their families by way of slideshow, coffee table book and a digital copy of every photo. The photographers are of such skill that the package altogether would cost in the many hundreds of dollars. If they asked anyone besides donors to pay for it.

My middle daughter, Cami (who I wrote about in a pair of blogs last week), was recently blessed with a Sweet Nectar session. My wife Erin, who, at this point, has waged so many battles on Cami’s behalf that I’ve lost track, participated in the shoot as well. Now, not only do we have the sweetest, truest photographs of Cami, I’ve ever seen, but we have her unique relationship with her mother captured on film. It’s a pretty remarkable set of pictures.

You can see the photos for yourself at this blog. The brief paragraph the photographer wrote about Cami and her experience working reminded me of just how difficult some of the past seven years have been. I had completely forgotten that early on a geneticist told us Cami likely wouldn’t live past three. She was a bonehead.

I’m grateful to have the perspective of 2012. We still don’t know what in the world will happen with Cami or how long she’ll live, but we do a lot better with enjoying what we have with her now. Just what that is and what it feels like to be in Cami’s presence day in and day out can be difficult, I think, for others to see and appreciate. Thankfully, we now have these photos.