Nana and Grandpa at the hotel house

Janey at the cheese and cracker reception time

This past Saturday, I realized how very long it had been since Janey had seen my parents.  I last saw them in October, when I went up there for a few days, but for Janey, it had been almost a year.  They used to drive down here from Maine for the day, a drive that is almost 4 hours each way, but as they get a bit older, and after my father's accident falling from a ladder, they can't make the trip as easily.  On the spot Saturday, I decided that despite all that was keeping us from getting away, we'd go spend a couple nights in Portland, half way in-between us, and have them come down for the day to see us at our hotel (Janey always calls them "hotel houses").

Breakfast, which Janey did not care for

In general, Janey likes trips.  That is, she likes them under her own terms.  It must be her music in the car, music that she wants us to change constantly.  Once we get to the hotel, except for car rides, she doesn't want to go much of anyplace.  Going away with her is not really a get-away or a vacation as just more a change of scenery.  It's great she doesn't mind being away from home.  But it's also harder to keep her happy in a hotel.  At home, if we have to say no, she often screams.  In a hotel, you really can't have someone screaming the way Janey does.  We can't stand our ground unless we want complaints and the front desk calling us to see if everything is okay, something that has happened a few times.  So, we keep her happy.  On this trip, it meant letting her take about 10 showers, having her play her iPad at full blast on YouTube Kids with the same videos 20 times an hour, and working on keeping her calm when she woke up at 2 am the 2nd night.  It was relaxing to come home.

Janey checking out a water feature in the lobby

However, it was worth it to see my parents.  We did manage a lunch out at a buffet, sort of a more downmarket Old Country clone.  Everyone found plenty to eat.  We got pizza from the hotel restaurant at night.  We exchanged Christmas presents, which we had not been able to do any sooner, and we sang some Christmas songs---Janey's favorite part of Christmas.

My parents commented on how clearly Janey sings, in contrast to her speaking, and that made me face something I haven't faced much.  Janey used to speak very clearly, when she did speak.  She doesn't any longer.  Often, no-one can understand what she is saying but Tony and me.  I hate thinking it, but it's become pretty obvious her speech is getting worse over the years.  But the singing---still lovely.  I sang the beginning of lines from carols, and she finished them, perfectly.  Hearing her sing parts of "O Holy Night" brings tears to my eyes every time.

Janey sees Nana, as Tony looks on!

During the car ride back, Tony and I talked about some small changes we are going to make with Janey.  For about 4 years now, we have been pretty much doing whatever it takes to make her happy.  Overall, it's been a huge help in making all of us happy.  But lately, she has become more frantic in her demands, and she doesn't seem happy even when she gets what she wants.  The big thing that has become almost impossible is the music in the car.  Janey will not listening to about 95% of the songs we put on, songs she has previously liked.  She just constantly says "Music please, music!" which means change the song.  This makes it very hard for Tony to drive when he's driving alone with her, because if you DON'T immediately change the song, she screams, sometimes kicks the seat, and makes it very hard to concentrate.  We decided on a new rule.  We'll change music only after listening to the rest of whatever song we are hearing.  We explained this to her, and then put the rule in place, and after not much push-back, she seemed to get it.  She didn't like it, but she got it.

Janey listening to Grandpa!

We decided to put a similar rule in place about putting on TV shows and videos, once we got home.  Again, she wasn't pleased, but she seemed to understand.  We am always balancing her need for control with Tony's and my need for sanity.  We are all in this for the long haul, and we as parents were starting to quite frankly be at the ends of our ropes.

Being away, even for a few nights, can give some new perspectives. They aren't always easy things to face.  We need to try to figure out Janey's speech regression.  We need to take back some control of routines that have started to make our lives very tough.  We need to find a way to see my parents more, while still being around for Tony's brother, who has been in and out of the hospital for a very long time now and who has severe health issues.  We need to take a hard look at our finances, which with Tony's retirement have become much more of an issue, making even 2 nights in a hotel a luxury we can't often do.  We need to have a life that better balances Janey's needs with our own.  None of these are easy tasks.  But they are necessary.

In The Driver's Seat (Guest post by Janey's daddy!)

For the first time ever, my husband Tony wrote a guest post!  It's written as a letter to Janey, to show appreciation of the changes that have allowed us to travel a bit more lately.

Thank you, Janey!

For the past four months, Janey, you have allowed me to be in the driver's seat of Daddy's car. Almost every day, I take you on at least one car ride, because you want me to play music for you in my car's disc player. This is something you have wanted me to do since you came home from the hospital, after you were very, very sick from your appendix bursting.

You like these car rides with our music that I play for you so much that you seem to also enjoy your bus rides to school in the morning and the afternoon bus rides when you come home from school.  A lot of times you run happily onto the bus in the morning, and Mama tells me that you run off the bus all happy in the afternoon and bolt right into the house.

Daddy's car rides with our music seem to make you so happy, even after you have been very angry or sad, that your brother William said to me, after he came along with us once, "wow, it's like giving Janey medicine." 

Most times our drives together are about an hour long, but sometimes, you and Daddy like the music so much that we drive for two or three or more hours. You hear some songs, like Santana's "Soul Sacrifice" from Woodstock in 1969, or The Ventures' "Wipe Out" from Tokyo in 1966, and you soon look like a humming bird as you drum your arms so fast out of happiness that they become a blur!  Sometimes Daddy and Mama think that our old car is breaking but it's really just you dancing and rocking so fast in the back seat!

And when we drove far away to take Freddy to his new school in New York, and to Maine to see Nana, Grandpa, and Aunt Sarah, you were so nice and happy in the car with our music playing, even when we were stuck for a long time in silly Massachusetts' traffic! And you were so good and happy in the hotel houses we stayed in.

And Janey, you put a big smile on Daddy's face whenever you come up to me now and say the first words of a song you want to hear on the next car ride, like, "You want to hear "generals gathered in their masses"?" That song is called "War Pigs" by Black Sabbath, which you like because your brother William has played it on his guitar and sang for many years in his room.

Mama has made you many music discs and put songs on your iPod since you were a little girl that we now play in the car, like "Angels We Have Heard on High" and Johnny Cash's funny song "In the Jailhouse now." And Janey, when you want to hear "Folsom Prison Blues" and you make your voice sound lower and say "hi, I'm Johnny Cash," you do that so well! We play songs "Beat It" and "Bad" from the disc Freddy gave to you for Christmas.  And you laugh a lot when daddy plays Weird Al's "Eat It" and "Fat." Daddy laughed so loudly when you said to me "you ain't fat, you ain't nothing!"

Janey, I hope we don't get too much snow this winter, because I still like to drive you around!

Again, thank you, Janey!