OK....I'm back.. (I would have never been able to do that a year and a half ago)... "MS doesn't kill you", "It wont leave your child without a mom. You will be there to help them grow up". This is what friends and family told me. MS doesn't kill you.... you just wish it would sometimes. I had a friend die recently. Her memorial is tomorrow. A friend that had a terrible life dealt to her and her AND her husband died too young, too young to raise their kids, too young to deal with bills and with mortgage payments and retirement and.. and... She left me feeling almost jealous. How could she get out of all of this so easy? I know.....life and children are a blessing and I treasure every second I can...but I am tired. I am disoriented. I have half my vision. Half my nerves function normally. Half the time I feel like I am drunk or hung over. All the time, overwhelmed. That will never change.
THAT...is a terrible way to start a blog.
THAT... is light and happy compared to the mental places and thoughts I've been/had. Part of it, I'm sure was a drastic change in physical life and part was mental symptoms of MS. But, I remember, clearly. I wish I didn't remember SO clearly.. those days and weeks and months while I was diagnosed, in and out of hospitals, fastly losing ground. Not being able to walk, to lift my hands, to hold my kids, to see. I also do, luckily, remember things coming back. I remember how much work I did with my therapists to be able to walk normally and speak normally and write... oh my god how I missed being able to write ..and how tough that was to get back. I had a journal and just wrote phrases over and over again in my weak, sketchy hand writing. Even now, when I write a school note for my daughter, or a shopping list for my husband, I look at it a few times and think how terrible my penmanship is now. I guess , though, there was a time when it was worse. I suppose everything used to be worse.
I like staying in now. I like staying in for days on end. I like lazy days of doing nothing but house work and taking care of the kids (which means 99% of my day is busy cleaning, playing, prepping meals, doing laundry, letting dogs in and out, emailing, taking care of neighborhood children). I don't tolerate the cold very well. I get exhausted and overwhelmed running errands with all the kids. Maybe its just winter blues as I seemed to be able to take much more on in the summer months....or maybe something has changed...or is about to? There is unstoppable fear of that. The doctors were finally able to stop the rapid onset of symptoms, but for how long? When you throw an apple in the air, it comes down. That is just a fact.
Moving on...
Moving on...
My husband and I asked the kids prior to Christmas if they wanted gifts from us, or a getaway instead. They were unanimously in favor of a road trip. They LOVE hotels. They don't care where we go, they LOVE it. So, I booked a hotel with an indoor pool and some attractions nearby and off we went.
These little overnights are a great way for us to re-connect as a family. We leave the cell phones and tablets and tv, etc.. So, we ended up going to a Brunch with Santa at Sturbridge Village (I figured it doesn't get too much more genuine round the holidays than Sturbridge and since we like to instill the REAL meaning of Christmas, this would be the place). They had a brunch of ice cream, waffles, desserts, cocoa and more.
We had brunch with the jolly old man and then took on the pool and hot tub at the hotel, Sturbridge Host Hotel. They soaked up every second. We went to a fireside dinner at the Oxhead Tavern where again they got anything they wanted to eat.
After dinner we infested the pool area again and then resorted to our room where we followed through with our hotel tradition of a book reading. .. This time though, since it was so close to Christmas, we donned our new Christmas PJs. I read a book Al picked out a week or so earlier called The Book with No Pictures (I highly recommend it). It was in perfect theme for the no phones, tv, electronics...or pictures..
After the book we broke out the glow sticks (another hotel tradition) and feasted on cold leftovers. It was then that my son snuggled up beside me and said "This is THE BEST night EVER". I asked why, although I already knew he would go on and on about Santa and the hot tub and the hotel adventures. He replied " Because I got to snuggle with my mom while she read a story and then I got to eat a cold hot dog".
Now.... Its not like I don't spend time with them or read stories to them or tuck them in every night, but it is why I LOVE these little road trips. Every little thing takes on more meaning.
Seeing as I like to stay in, we hosted our Family Christmas Eve.
It was wonderful. It was amazing to see the little ones play like me and my cousins once did. I remember past Christmas Eves at my Grand Parents, the cousins would run and play for hours in the basement, only being summoned up to leave them and drive home. I am blessed to be able to witness that. I don't think we would have if someone else hosted Christmas. . . I read my kids their annual (MY annual) Christmas story(to follow). We threw reindeer food out on the lawn and I tucked them in. They fell asleep in under 15 minutes. Memories I will keep forever. Memories I am glad, despite my "deficits" to be here for. I guess that is it. Good outweighs bad this time.
I took a month off from just about everything in my life to slow down and feel less overwhelmed and create more of these memories. It is amazing how few of my friends and family and community that I thought were so close DIDN'T question me sucking back from reality, public, obligations, social scene, etc... Then again, I always correct people when they say "You are not alone". Really, no matter how supported you are, you ARE alone in your battles, your glory, your memories, your life. So, you should make the best of it, for YOU.
The Christmas Story, as posted in the New York Times years and years ago
You and I are aware of this, as are our older boys and girls; but to very young children the language is not quite as comprehensible. To them, Christmas is a time of excitement, glamour and Santa Claus. That is as it should be. Nevertheless, the reason for our celebration is a deeply religious one, and even little children should understand this.
With that thought in mind I once wrote the story of the first Christmas, told in very simple language for little girls and boys. Judging from the response to it, it filled a need. So, each December, we re-print it. Here is the story:
Once upon a time, far, far away, and long ago – long before even your Grandmother and Grandfather’s Grandmother was born – this story begins.
There was then a little town called Bethlehem, and many people were travelling toward it from all the country round. But all those men and women were not travelling as we do nowadays – on trains or in cars, and of course not by airplanes. They were all walking – miles and miles and miles; or riding on donkeys; or on the backs of camels.
Now among all those that were going from their homes towards the little town of Bethlehem were a man named Joseph and a young woman named Mary. Mary was riding a donkey and Joseph was walking beside her. Joseph was very anxious because it was night, and the stars had already come out in the dark blue sky, in that land so far away and so long ago – just the way the stars will come out over our house on Christmas Eve. And Joseph was worried.
He knew they must find a place to sleep and very soon, because Mary was going to have a little baby and its mother must have a warm and cozy place to rest. Still, though they looked everywhere, there seemed to be no room for them anywhere. Every house and every Inn was filled. But at last, when he was quite discouraged, Joseph found a stable, in which they could be warm and rest. And there, with the sweet smell of hay, with the soft warm breathing of donkeys and perhaps little lambs about them, Mary’s baby was born – Jesus, the little Christ Child. Then Mary, his mother, wrapped Him closely round and round with white linen, as they did to little newborn babies in those days in that land, and laid Him – not in a crib, but in a manger, right there, in the stable. And the animals, warm and quite, lay or stood nearby.
Outside the stable, over this Christ-Child’s funny little bed, high in the dark blue sky a star seemed to shine, with greater brightness than any other star in the heavens. And the shepherds, tending their sheep far off, thought the star beckoned them to the Baby Jesus. And three great kings, also far off, thought that the bright star in the blue sky beckoned them too, to come to where Baby Jesus lay. So they all followed the star; and at last it led them to the manger.
There they all knelt down and worshiped Him, and the three great kings laid precious gifts of gold and rare and fragrant perfume before the little Baby Jesus. And now, every year since Christ was born we remember His birthday, and we celebrate it, and call it Christmas!
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