Summer Schedule

I had lots of ideas at the beginning of summer - activities, crafts, outings - but guess what? Laziness has taken over! We've done a lot of fun things but I've also wasted many hours farming on Farm Town (ahem) and other online silliness, while the children bicker and sit staring into the air, a leg thrown over the edge of the couch. Yesterday was the worst of all, and I decided it as time to get back to a little more structure in our days.

So - I made up a Summer Schedule. It follows the natural rhythm of our days, but gives me a time reference so that our day are a little more structured (most especially important for a time-waster like myself and a routine-needer like Graham) and so that I actually fit in all the fun ideas we have planned for our lazy summer days!

Keep in mind that each time block has PLENTY of time for the activities listed, plus some. There's plenty of downtime throughout the day for someone to stare if they want to, build with Legos, create things out of cardboard, draw with pens, swing outside, hose themselves down with water - whatever.

Wake - 8am (meaning, from when we wake up until 8am - my older boys have actually been waking around 8:30 . . . ) Mom shower, TV is on (PBS for the kids). This morning I had plenty of time since I got up at 6:30 so I went online for a bit.

8-10 Breakfast, Caris & Canaan bath, walk/outside time/exercise (today we did Wii Fit - the idea is to get some movement in early in the day, especially for mama), morning chores (this takes about 15 minutes - basically just getting pets taken care of, laundry going and dishwasher ready for the day)

10-12 Craft or activity (today the big boys are watching an old movie of David & Goliath that I unearthed when I tidied the laundry room), mini-school (a few things to keep us moving through our lessons - maybe 10-15 minutes per child)

12-1 Lunch, read-aloud - I just finished reading them Traitor in the Tower and now we'll go back to The Horse and His Boy

1-3 Mom's relax time, usually computer, and kids quiet time

3-4 Mom quiet work (paperwork, listing on eBay, whatever), kids computer/tv/reading/outside. Canaan's usually still sleeping at this time so the point is for us to be doing something interesting but quiet.

4-6 Afternoon chores - this takes a good chunk of this time, but I work with one child at a time so the rest are free to play. I'll also get dinner going during this time if we're not at baseball

6-8:30 Dinner, boys shower, Bible study, kids to bed

Strange reaction

Mom & Megan on our trip to the coast last September

I bugged my Mom over and over about getting BRCA testing. This is a test that would show whether she was a carrier of a genetic defect that makes one susceptible to breast and ovarian cancer. She wasn't resistant to having the testing, it's just that she has continual, ongoing medical appointments and procedures and the BRCA testing kept getting lost in the shuffle.

We talked about it quite a bit, usually with the assumption that the testing would come back positive and what that would mean for Megan and I. Obviously we would then be tested as well, and if our tests came back positive, it would mean action. We could choose to be closely monitored for breast cancer. We might choose to have prophylactic mastectomies. Surely we'd have hysterectomies, since ovarian cancer is sneaky and appears often at a young age. I told my Mom I would probably wean Canaan, get pregnant, have one more baby and out would come my womb.

Well, Mom finally had the test done. It's just a blood test, but it has to be sent to the one lab in the US that does the test itself. The lab called and told her that her portion of the test would cost $1,300. She readily agreed - a testament to the love she has for my sister and I. A $1,300 test and she didn't even blink.

Megan & me

Yesterday Mom called on my cell phone while I was on a mad dash to Wal-Mart on an unsuccessful mission to buy black baseball pants for Malachi. She wanted to let me know that the test results were in, and they were negative. She said J (our beloved assistant at the cancer center - oh, she's really more of a family friend than a medical assistant) just had to let her know, and that this is such good news for us girls, and that Dr. M, my Mom's oncologist, said, "Woo hoo hoo HOOOO!!" when he saw the results.

Wouldn't you think I'd have the same reaction? I would - but I didn't. I told my Mom I was happy about the results and that maybe it would take some time to absorb, and that at the very moment Graham's vocal ticcing was more than I could bear - and all of this was true.

After Wal-Mart we hit Big 5, called Target, and ultimately ended up driving across town to get the pants. By this time it was around 5:30 and Malachi had been expected on the field for warm-up at 5:00 for his 6:00 game. 5:00 traffic wasn't helping matters.

As we headed across town, I was just kind of vaguely thinking about the testing, the results, Dr. M and J's reactions - and before I knew it, my eyes had misted over. Then tears were streaming down. What was this? I was crying and didn't even know why. Then it hit me. In a weird way, a positive BRCA test for my Mom would have been some kind of a reason for everything she has been through. A positive test for my sister and I would have formed a solidarity about the whole stupid thing.

Mom

But instead, it's just random, and it's just my Mom. Alone. Yes, we love her and support her and go to all of these myriad appointments and procedures with her, but the battle is hers and hers alone.

I'm not sure how to process this news that is unequivocally good. I am glad my sister and I won't have to wear these results around our necks, always wondering when it might strike. But we still have to figure out how then DO we proceed medically - how much monitoring IS appropriate. I am glad that I don't feel compelled to rush out and have a hysterectomy when my husband and I long for more children.

Most of all, with the heart of a mother beating within me and the understanding that brings, I am glad my Mom doesn't have to live the rest of her life wishing she hadn't passed on such a volatile gene. I watch Graham tic and hate that I gave him that. It's ridiculous to feel that way - no one has perfect genes - but I know my Mom and the love she has for us and I know she'd feel just the same.

So I will ask the Lord for clarity today and in the good news I will rejoice.

TS Days

It has been a difficult - no, tiring - few days. Having Tourette Syndrome is one thing. Having a child with Tourette Syndrome is another. The last few days have been what I will call TS Days. TS doesn't worry about other children in the home. It doesn't mind that it's annoying everyone nonstop, all day long. It is a cruel master. Thankfully, it ebbs and flows. I know reprieve will come soon. But right now we're in its grip and at the end of the day, I am tired.

Sleepy Day

On January 5 Graham had an appointment with a neurologist. I went into this appointment knowing that Graham has Tourette Syndrome, but wanting to avoid leading the doctor in that direction, just in case I was wrong and something else was going on. I wasn't wrong. The doctor kept us waiting for over 2 hours, but he was so lovely that within a minute of meeting him my anger melted away. He was great with Graham and listened carefully, asked lots of questions and spent his time examining him. Then, as if announcing that he prefers butter over margarine, he declared that my son has Tourette Syndrome. Just like that. We discussed some testing, medication, scheduling a follow-up appointment and he was on his way. He had a doctor shadowing him that day. I gathered my children and belongings and as I opened the door, I heard our doctor telling his shadow that Graham is textbook Tourette's - classical.

I didn't have a good day that day. Like I said, I knew going in that we were dealing with TS. It didn't come as a surprise to hear him officially diagnosed - it just came as a big, fat punch in the gut. My son is textbook, classical Tourette's. There's no doubt in the doctor's mind. Since I started suspecting this in Graham, and doing research, and discussing it openly, I have heard countless friends say that they never noticed that I have TS. You can't even imagine how this shocks me. Since I was around 7 years old, I remember feeling like an oddball, trying desperately to hide my tics and often failing. I had a frog sound that annoyed my family. I had a lip-curling tic that the clarinet section noticed in band. I had so many tics that I tried to disguise, which I now learn is a great coping mechanism for TS sufferers.

So when I heard that doctor pronounce my son's official diagnosis, years of discomfort built up in me. Parents want better for their kids. We don't want our kids to suffer. We don't want them to feel weird. We want them to be comfortable in their own skin, to be well-liked, to excel.

I've done fine with TS, I really have. According to others. Many of my tics are what we call "internal", meaning that they require me to tense my muscles over and over. It isn't comfortable. I still have tics that make me feel that I appear odd to others, whether or not they actually notice. The mental energy that goes into TS for me is indescribable to someone who doesn't deal with this.

Ohhhhh, I hate this for Graham. He, however, doesn't seem terribly upset . . . on the surface. When I talk to him about TS he seems pretty open about it. He asks questions, talks pretty openly. I'm worried, though. I've noticed a few things that are cause for concern that I want to talk to the doctor about when we reconvene to discuss the results of his testing.

Speaking of testing, he had an EEG today. That means that last night Alif kept him up until 11, he got to sleep from 11-3, I got up with him from 3-5 and Alif took over from 5-7. His test was at 8. I couldn't imagine that he would be able to sleep in that office, sitting in a recliner, with an electrode-filled cap strapped on, plus electrodes on his arms and earlobes, with a technician and me both staring at him. Well, he did. I couldn't believe it. He did just great! I think this test was just to rule out seizures.

So - his next appointment is next month. We'll see where we go from there.