No, I'm not thinking about Blue. He's harder than I imagined.
This is about Toby.
Awhile back I got Toby ready for bed. Sometimes, if he's tired, there can be struggles during this process. It used to be that you had to pin him to get his diaper on, but lately bedtime routine usually runs smoothly. (As it did this night.) So, he was pajamaed up and I said, "Let's go get milk." And he signed milk while saying, "Mulk," and followed me to the kitchen and stood next to me while I got him milk.
I remember thinking, "I thought it would be harder than this."
One recent Saturday I was pushing Toby on a walk around our neighborhood and at one house a pair of yippy dogs with serious little dog syndrome came rushing at us barking up a storm. Toby was barefoot and his little toes were dangling about six inches from that stupid dog's barking mouth. Their owner kept calling them and calling them. She assured me that if she opened the front door they'd come running. Uh, no. That didn't work. Five minutes of non stop barking go by before their owner finally, physically retrieves them. Her comment, with dogs squirming in her arms, was, "I can't believe your baby's not crying."
Toby was not crying. My Fragile X boy who is supposed to be easily overstimulated was hanging out, unimpressed, seemingly wondering what was wrong with those weird little convulsing animals. In a situation that could have stressed any toddler, much less one with Fragile X, Toby was fine.
A few Sundays ago at church I was having a conversation with Blue and the woman standing next to me, ho knows Toby has Fragile X and also knows Blue is a handful, turns to me and nods toward Toby, "And you were expecting him to be the hard one." See, I'm not the only one noticing this surprising turn of events.
This same Sunday was our marathon day. The boys were more than an hour early to church because I was singing and Kevin was teaching. Thankfully Toby fell asleep during his class so he at least got in a thirty minute nap because straight from church we ate at a loud, crowded restaurant then from the restaurant we went to the beach and from the beach we went to a church baptism and pool party. That would be too much for any toddler. Just the pool party, where at any given time there were 15 to 20 kids in the pool and 50 teens and adults walking around on the patio or outside, should have stressed him out on a normal day, much less the busy one we'd already had...
I took this picture thinking the caption should be, "Can you guess which kid has Fragile X?"

Toby (far right, just a head over Kevin's shoulder) was not frantically clinging to Kevin. He was loving being in the pool and having fun. The surrounding volume proved inconsequential.
Early into Toby's diagnosis I read Fragile X Fragile Hope: Finding Joy in Parenting a Child with Special Needs. That word joy in the title made it a must read. When we first got Toby's diagnosis I felt gutted and the part that had been ripped out was me was joy. There's a scene in this book when it's a holiday (Valentine's, I think) and the parents and the older son (who doesn't have Fragile X) were at the table but their son with Fragile X was just running around screaming and it really bothered the author/mother that they couldn't share these moments together as a family, that their youngest son was always set apart. That scene lasted with me because I too wanted to have a family that could do things together as a family, especially nightly dinners. Toby is a great eater. He is fine during meals. I haven't pushed the utensil-using issue just yet, and he has a few habits that we don't love, but overall, my fear that family meal-time might not include the whole family was unfounded.
It's been a stressful year. Blue is seriously stressing me out on a whole new level. And in the midst of my stress, I can't help but find it ironic that most of my joy comes from Toby. The other night while I was cooking dinner, I looked over and Toby was just standing in the middle of the living room dancing to my Pandora station's current offering. It filled me with joy.
Last Saturday night I was driving back from Jupiter after a lunch date and movie with an old friend and I made the mistake of getting the "Blue report" during my drive home. I got to crying so hard I should have pulled over but luckily no one was killed during my "blind" stretch. Toby's diagnosed syndrome is proving much more manageable than Blue's yet-to-be diagnosed mental health issue. When I got home from that drive/cry, I walked straight to Toby's room. Kevin gave me a, don't-he-just-got-quiet look, but I walked right past him, got Toby out of his crib, and he and I sat and sang songs and cuddled together till I was fully cheered.
At speech this morning when his therapist came to get him, he did his usual shy, into-Mommy's-legs dive, but when she said, "Let's go!" He turned from me, grabbed her hand and marched toward the door, calling back a cheerful, "Bye-eye!" over his shoulder.
He has more words and with better pronunciation than Kaden had at this age. (Lots and lots more.)
I don't doubt that we're still marching an uphill battle to keep Toby at his best, but this is one area in my life where I don't feel winded, I'm just enjoying the climb.
