It’s like living in the Twighlight Zone sometimes.

It’s like living in the Twighlight Zone sometimes.

This morning I was preparing Caleb’s breakfast like always. He’s in a phase where he only wants grilled ham & cheese. Easy, I can do that! Then, two days ago, we ran out of ham and circumstances have conspired to leave us ham-less.

Yesterday, I cooked him a grilled cheese. He took a bite, peeled the bread apart and told me, “I want ham.” clear as day. YAY! But… “Sorry dude, we don’t have any ham. Eat your grilled cheese.” He ate 1/2 the sandwich and was all DONE breakfast. Fine.

This morning I didn’t want a repeat so I decided to pour him a bowl of cereal (Cinnamon Toast Crunch…total garbage but he LOVES it…) and get him a bowl of yogurt. This IS a Caleb approved substitute breakfast for moments we cannot deliver the grilled ham & cheese (or hot dogs or meat balls his alternate suggestions to us every single time this happens.)

Cereal and yogurt days make me happy because…EASY! I like easy before I start my caffeine consumption for the day! I had a spring in my step right up until I pulled the door of the refrigerator open and remembered that I had finished the milk the night before.

“&**(^(&*&^%*&@#!” was my response to this discovery.

I needed another acceptable substitute breakfast fast…Caleb’s shower was nearly complete. Ahhhhh! I grabbed blueberry waffles from the freezer and popped them in the toaster. Then looked for something that might tempt him to eat them. I sliced up a banana and then remembered HALLELUJAH! We have strawberries in the fridge for strawberry shortcake! They were even sliced and had an nice sugary juice in with them! AND OMG! That’s homemade (Wilson’s Farm) whipped cream!

The spring was back in my step, I might have even tossed in a wiggle or two. I buttered his waffles, cut them up, slathered them with strawberries & bananas and added a dollup of whipped cream. I even took a picture to share on Facebook because, hello, MOM OF THE DAMN YEAR PEOPLE!

See! Just LOOK AT THIS!photo

I got Caleb’s plate on the table with his drink…raising the spoilage a notch it was sweet tea instead of juice…just in time. He came strolling from the bedroom as he pulled his shirt down over his stomach. He looked at me, looked at his plate and told me…

“No like it. Grilled ham cheese?”

I walked back into the kitchen to bang my head on the counter, and maybe drown my sorrows with the last of the delicious strawberries when he fired his parting shot…

“I want water.”

Annnnnnd, welcome to my fragile X world…

(PS – I ignored him and he ate the damned waffles. *sigh*)

 

Perspective

Perspective

The always beautiful Chelsea.
The always beautiful Chelsea.

My dear, dear friend, Mrs. Rogers is a fan of perspective. Every International Conference that we attend, our third having just passed, provides me with boatloads of perspective. If there ever comes a day when I think that I know all there is to know about fragile X as a disorder, I won’t stop attending the conferences…if only for the perspective it provides.

I remember in the early panicked days after we received Caleb’s fragile X diagnosis¬† how desperately I searched for someone, anyone, who could tell me how to fix this…him…us. For many years, in fact, I read every article I could about the status of current research. I remember telling my husband in breathless tones, “They’ve reversed all of the symptoms in mice!” I remember the surges of hope that accompanied reading those articles, surges of hope that were all I had to keep me afloat in that sea of depression I had plunged into.

Somewhere along the line that hope turned to bitterness, though. “Who cares if they’re still curing mice?? What about my kid?” which then became despair, “He’s almost 8, it’s almost too late for him!”

When Caleb turned 8 without a cure and our lives didn’t implode, I took a deep breath and realized that we were going to be OK. It was a remarkable moment for me to realize that this is our life and I like it. I like the friends it has brought into my life, I like the strength it has put into my spine, I like the confidence it has given me in myself. This is my life, it’s his life…and we’re good.

The ever charming Glenn
The ever charming Glenn.

I’m not immune to the hope for “better.” I’m not content to just be where we are at. There are many ways our lives can improve and it’s my job as the “Money” to get us there but the feeling of desperation, the feeling that time is running out, is gone. It’s been replaced with the realization that we’ve only just begun…and we’re pretty freaking happy already.

As we were on our way home from Orange County, my husband asked me if I had attended enough sessions…if I felt that the trip had been worth the time & expense. I realized then that I hadn’t actually attended as many sessions as I had planned and I felt briefly let down…as if I had lost an important chance to learn the secret way to make our lives better. After further reflection however, I realized that what I needed was perspective and that was exactly what I got.

I sat in an audience watching several adults with fragile X talk about their lives, their happy lives…granted there are struggles but who among us doesn’t have those? I spent the hours I was not in sessions meeting and talking with my new friends Cem, Spencer, Tommy, Eric & some old friends Nick, Dillon, Chelsea, Kelley, Glenn, Alli, Josh…just to name a few…and it was those hours that I value above all else. Sure, I could have learned another method of managing Caleb’s anxiety, but instead I talked with the people who had learned to manage their OWN anxiety…living proof that what I want for Caleb is possible. Perspective.

My new hero, Tommy.
My new hero, Tommy.

Of the sessions I did attend, many things grabbed my attention and set my brain to working but none of them grabbed me the way one single quote did…it has wrapped itself around me like a warm blanket. One of the self advocates, Tommy, said…”never stop believing.” That was his advice to other self advocates and to the many parents desperate for his words of wisdom.

Never stop believing. I won’t. Thank you Tommy…and all the other self advocates who gave me fist bumps, high fives and even verbally smacked me down when I pushed too hard (oh, lord can those boys make you humble!)….thank you for showing me what is possible. It was worth every penny, every minute, every moment away from my own son…it was worth more than I can express.