Life with Fragile X Syndrome

We had a very nice, low-key weekend. Monkey is still under the weather but fortunately he’s just struggling with a runny nose and annoying cough rather than that nasty croupy cough.

We took nice long walks around the local reservoir both Saturday and Sunday. We really enjoy having this great place to go! There are always tons of dogs, which excites Monkey to no end. Yesterday, he spent nearly the entire walk with his arm extended as he signed “Come Here” and said “’Mere.” Normally he does this only when he can see a dog but yesterday he was calling for the next dog before it was even in sight, lol. Duhdee and I enjoy the nice brisk walk we can get in while Monkey is riding in the stroller. We’re determined to lose the last lingering extra lbs. we’re both carrying.

Other than walking we spent quite a lot of time in the yard. Monkey ran around and amused himself by picking up mulch and throwing it into the bushes so he could tell me “Yuck!” which I then had to repeat so he could laugh at how FUNNY we are. I planted some Cascadia Snap Dragons in the window box we hang from the front porch. If all goes to plan we’ll take the extra seedlings and plant them in the hanging basket above as well. Here’s hoping for germination! I also finally took the strawberry plants from the refrigerator and planted them in the hanging bags. These will be hanging off the back deck where they’ll get LOTS of sun. I can’t wait for strawberries!

While I was planting, Duhdee was tearing out bushes. He managed to get 3 of the 4 shrubs that are in our future garden out but not without totally dismantling them. We had hoped to send the whole bushes up to New Hampshire where they could be replanted but they were not coming out of the ground in one piece. The biggest roots were all running under the fence into the neighbor’s yard so there was just nothing we could do to salvage them. It’s a shame but they were not in the best of shape anyway so I don’t feel too badly.

The seeds that we started a while back have started to break through too. They’re still in their mini-greenhouse in the basement. So far all 4 varieties of tomatoes, the cucumbers, the basil and the corn have all come through. Some are doing better than others (only 2 of 7 corn plants are up) but we’re making progress. The parsley and the peppers are the only holdouts. I guess parsley takes longer to get started but I’m a bit worried about those peppers! I’d also like a few more stalks of corn to show up.

Still no progress regarding the chicken. Duhdee seems determined to make me nag him on this one for a while. *sigh* He should know better by now. He’s seen my dad wear down my mom enough times to know how this will end!

I’ve set aside the Border Trilogy for The Omnivore’s Dilemma. It’s a very popular book in this city and I suspect I’m only going to have it for two weeks before someone else lays claim to it! I’m sure I’m on the end of the train here but have you folks read this book? Did it blow your minds? Did it make you angry?

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Here is the short version, when I’m not so sleepy I’ll tell the whole story.

Last night Monkey woke up with a barky cough and was struggling to breathe. We tried steam and it didn’t work at all so we called his pediatrician’s office. She advised us to try cold air. If that didn’t work we had to take him to the ER at Children’s Hospital. That’s where we ended up last night at 11:40. He has a severe case and needed oral steroids because his oxygen levels were a bit off. We got home around 3 AM, he was in bed by 3:30, he was up at 7. Duhdee is sleeping in, I’ll sleep later when he wakes up. Ugh.

Oh, and, the best news? Night 2, and sometimes 3, are typically worse. “Hopefully” the steroids help but there’s a chance we’ll be back there tonight. Today we need to go see his pediatrician too. Duhdee can do that, lol.

Lucky for you all I had another FX Memory lined up, I’ll post that in a while.

That’s not a metaphor.  We literally planted a seed, in a cup, and it grew!  For someone with what one might consider to be a brown, wilted, pathetic little thumb, that’s pretty darned exciting!   So what sort of seed did I pick, you may be wondering?  A lovely flower, since we always planted sunflower seeds in little cups when I was little? 

Nope, that wasn’t for us.  We planted…corn.  I know it seems odd, I guess because it is a bit, but we’re having our very first “real” garden this year (as opposed to the 5 gallon buckets we’ve been planting in for the last few years) and I wanted corn!

Since planting that first seed last week, we’ve added 9 more corn, 6 cucumber, 2 parsley, 2 basil, 2 pepper and 4 varieties of tomatoes (6 cherry, 6 plum and 2 each of two large sizes.)  We’ll be planting more corn in two week intervals over the next month to spread out the expected bounty.  Gosh, I hope it works! 

and want to do a good deed check out this website called Free Rice. 

It’s a multiple-choice, vocabulary quiz that adjusts the level of difficulty based on your answers.  Anything you get wrong comes up again so it’s educational as well.  Plus, for each answer you get right they donate 20 grains of rice to the UN World Food Program!  That may not sound like much but in about 10 minutes I’ve donated 3,640 grains of rice which is a half a cup of rice (when cooked it makes a full cup.)  Not bad for the time I normally waste while I drink my morning cup of tea. 

I am shooting for a full cup of dried rice.  Really, check it out.  My current score is hovering between 40 and 46, tell me how you do!

Edited to add:  Check out the “Options” tab it let’s you set all sorts of things, like starting out at Level 1 if you want your kids to try, or higher if you want to keep it to yourself.  You can set it to keep track of how many grains of rice you’ve ever donated or you can start from scratch each time!

Do not tell anyone but, last Friday, I played hooky!  I knew it was going to be a slow day at work and I desperately needed a break so we dropped Monkey off at school and we came home.  We had a nice relaxing morning and then decided we should take Monkey to the Museum of Science during the afternoon.  Duhdee was not very optimistic about the entire outing, he seemed convinced that it would end badly but I bullied him into going along.  I knew Monkey would at LEAST enjoy the ride on the T, if nothing else, so I thought we had a decent chance of a successful outing.

I was absolutely, thoroughly (and disgustingly proud of it) right.  The ride on the train was thrilling.  We even got to ride on two different types of trains just to get there.  Anyone who thinks it isn’t exciting to commute in this city should spend 5 minutes on the train with my child.  It’s pretty darned clear by watching him that this is the BEST THING EVER!  When we got off the train we got to walk along a busy street and see the traffic speeding by.  There were cars and trucks and duck boats too!  We walked across a bridge that rumbled beneath our feet which was exciting but only in hindsight.  During the walk across it was fairly tense but as soon as our feet touched solid ground on the other side he looked back with his face lit up.

As we approached the building we saw a giant DINOSAUR and we learned that dinosaurs apparently whisper their roars in Monkey’s world.   The doors to the museum spin and you can push them, unlike the doors at Children’s Hospital where if you push them they stop moving which is not fun at all!  Once inside there was the Archimedean Excogitation kinetic sculpture to study and there were escalators running up and down 3 stories.  We visited a space capsule and Monkey lay down on top of me in one of the seats and checked out the control panel.  We visited an undersea exhibit with computer generated fish and sharks, so many buttons to push!  We even spent some time playing with a tornado.

After we left the museum we went back into the city and had dinner before we left for home.  Initially, they were going to seat us in the middle of the very busy restaurant but I’ve learned my lesson from other trips and asked for a quieter seat.  Monkey was perfect at dinner.   I think it was one of the nicest dinners out we’ve ever had despite the slow service which normally causes all sorts of problems. 

After dinner we caught the T back home, it had been a long and busy day and the train was very crowded but Monkey sat on Duhdees lap and snuggled for nearly the whole trip.  At the very end he decided he wanted his Umma but I had nowhere to sit so we ended up standing together at Duhdee’s knees for the last few minutes.

It was so nice to have a nice outing with no tears from anyone!  I wouldn’t have blamed Monkey even a little bit for being grumpy on the way home, he was so very tired, but he was a superstar! 

This may seem a bit odd to people but I still haven’t been tested for Fragile X. It was one of the very first items brought up by the geneticist I met with in the weeks after Monkey was diagnosed but I was not able to think about it at that time. I was too focused on what this news meant for Monkey. I didn’t have the emotional energy to think about what it meant to me.

Since that time I’ve periodically given some thought to being tested but never reach a conclusion. I am vaguely worried about what having the test in my medical records could mean for me. Genetic test results are well protected in Massachusetts and in Maine, the two locations I will likely spend the rest of my life living in, but that is not the case in many, many other states. What if I decide to move to another state? What if that decision is made for me by my career or some other situation I can’t yet anticipate and I move to a state where it is legal to discriminate based on genetic information? What if I move, only to find out that I cannot obtain insurance for myself or my son because of the testing?

Other than that fear, there is a bit of “What does it matter?” involved as well. I am what I am. Is there a reason, beyond curiosity because my insurance won’t pay for that, to establish whether I’m full mutation or carrier?

What do you think?

Monkey is, without a doubt, a mama’s boy.  He will do and say things for me that he will say to no one else.  Sometimes I’ll ask him to share a new word or a new skill with Duhdee and he ignores us.  Sometimes he’ll even be doing something particularly cute and as soon as Duhdee walks into the room he will stop.  I know it won’t always be this way.  There are things he does with Duhdee that I can’t do with him.  There will be more and more of these activities as he gets older, I’m sure.  So for now I store away little nuggets like this to carry with me later:

From school, Monkey was on a walk with his class after recess.  As they approached the driveway at the front of the school where we do pick-ups and drop-offs he said, clear as day “Mama.  Home.” and he pointed in the direction that we drive away.  One thing that is particularly funny to me is that I never do afternoon pick-ups, those are Duhdee’s responsibility!