« April 2011 | Main | June 2011 »
I did my usual birthday hoopla today, but Toby's favorite part of his birthday party was just hanging out with K.
I could have saved myself a lot of trouble and just invited K over, but what fun would that be? (I'll get my play by play of the party details up soonish.)
Last May 23rd, Toby's first birthday, I really loved some pictures I took of him looking over the couch. Like this one:
About one year later (this pic was taken April 18th) I got another picture of him looking over the couch:
His party is tomorrow. His 2nd birthday is a little over a week away. All the baby is gone from his face, isn't it?
Sigh.
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.
Blue's doing his best to ruin my life right now and the best I got in me for retaliation is posting embarrassing, mid-haircut pictures of him on this blog:
He is SO winning.
You gotta love that when I told my mom to sit for this picture she kicked her leg up.
As a sixty um something... She's looking pretty fierce, no?
I took her for tea at Whitehall today.
We've done tea in London, we've done tea in the Breakers... but this was a pretty kickin' view for tea:
And there was a train in the room!
I know, I know. I'm a mom too. What did my boys do for me? They stayed home with their daddy, that's what they did for me!
But I did see 'em for a little bit in the morning before church.
(Is it just me or is Kaden getting too handsome?)
And when I got home I even went on a nice walk around the neighborhood with Toby and Kaden. Blue wanted to stay with Daddy. Fine by me. Blue and I aren't really on speaking terms if I can help it. As for how he's been behaving lately... We have an appointment with his psychologist tomorrow morning and, pretty much, I just want to ask him to refer us to a psychiatrist who will drug the boy into zombie land. I am so done.
Let's face it. Motherhood can be complicated.
Even my chic mamma and I have our complications, but today was good. When I got home and Kevin asked how Mom and I did, I said, "I only had to yell at her for being a back seat driver!" For us, that is just so good.
All in all, a lovely day...
The minute my mom (Oma) or Kevin's mom (Gran) picks up Toby he plops his head down on their shoulder and snuggles, not budging until they budge him. It's like he goes into a grandmother trance. No matter the time of day he seems to think: this is the shoulder on which I should try to sleep. He doesn't even see Kevin's mom but once a month on average but yesterday when he saw her, immediately it was this:
Neither of them mind this at all.
This time last year we were cleaning and painting and unpacking and cleaning and unpacking and painting and assembling and...
We closed on our house at the end of April last year. We didn't get our stuff from out of storage till the second week of May and didn't move in until sometime after that. But on May 23rd, Toby's 1st birthday, we had his party at the house, oh yes we did! This meant that last year, whenever I bought something for the house, it was also considered part of the party decorations. :-)
When I came home with this hibiscus plant for the front porch, Kevin was all like, why don't you just rip up our money and toss it in the air for the wind to carry away? (I have a history for killing potted plants.) But here it is, a year later WITH THREE BLOOMS.
HA!
Took pics of my ONE-year-old today. Here's the goofiest of the bunch:
18 days till I have a two-year-old. :-(
Maybe the most important toy in your house is your kid's lovey and this question is just a redundancy from last week.
Not for us.
For us, the most important toy is our indoor trampoline. It is most important because it greatly contributes to keeping me sane.
"Blue, go jump."
"Blue, too wild. I'm setting the timer. Jump for five."
"BLUE. TRAMPOLINE. NOW."
Common sentences in our house.
The trampoline came to us via target.com (available only online) as the boys' main Christmas present of 2008. This year, with Blue's new level of acting up, it's seen more action than ever before. Until Saturday. On Saturday tragedy struck:
The bungee chord snapped. (No one was hurt.)
The boys went straight to their tools and gave fixing it a go:
Meanwhile Daddy got online and found the replacement chord and a new green mat. (We noticed that some of the holes on the mat were on the verge of ripping through.) Replacements total: $30, less than half the cost of new trampoline which, had their not been replacements available, we still would have bought. We could have called it my Mother's Day present.
In the meantime, until the parts come and trampoline gets fixed, the new sentence is, "JUMPING JACKS. NOW."
Is there a most important toy in your house?
This pic taken today is one (and it's not touched up) where it's obvious why we call this boy Blue.
Hey look - Blue is eating dessert. This means that his privileges (eating sweets is a privilege) remained intact today. I think it was the only the second day this week and he was aided by the fact that we were out of the house between 9am and 6:40pm (church, then lunch out, then beach, then baptism/pool party), but I'll take it!
Even so...
I really thought that we'd gone the entire day without a single Blue incident until I walked into the kitchen after the boys were in bed and I saw a tea box that needed to go in the recycling bin stuffed with squares of butter.
?!?!?!?
Um yeah, so when I was already at church (just want it to be clear that this was under Kevin's watch) Blue took a knife that was on the counter and a stick of butter that was on the counter, cut up the butter and stuffed it in the tea box.
Now our butter is going to taste like mint.
Ok no, he shouldn't be playing with knives. This is very, very bad. But he didn't make a mess. And he didn't pee anywhere. And this was the only incident ALL DAY.
We're calling it a victory.
