Christmas with Sara

This is a time of year where families gather and celebrate life and hope. We know the "real" reason for the season - but the continued celebration has more to do with family and sharing. We have a few Christmas traditions that the kids and I really enjoy.

In addition to celebrating Christmas, we honor our Jewish ancestors by lighting the menorah and singing the hannukah prayers. We decorate the house with ornaments accumulated from 4 generations and tell any stories we remember about them. We bake swedish breads and german cookies. I cook an awesome brisket and potato latkas for Christmas Eve dinner, and a ham for Christmas day. Every year I buy the family some "family present". One year it was a digital camera, then next year was a butter dish, and last year it was a gravy boat.

We try and stay lighthearted about the holidays - placing no real importance on presents, but enjoying them anyhow. My kids look forward more to the stockings. I have been known to find the most obscure and silly things to put in a stocking. Popcorn on the cob, for example. Put the whole thing in the microwave and watch it fill up the appliance. Or dumping a barrel of monkeys into the stocking, to become tangled with the mountain of chocolate that is always present.

This year was a lot harder. We tried to keep to some of our familiar and comforting traditions, but it was not easy.

Sara did not want to have the menorah lighted or the hannukah prayers. There was no family present. The only decorations were on a small live tree that Michael wanted. But, the stockings were filled with the silly and sweet.

We almost didn't have any presents this year, but I sold off something on Christmas Eve. Then I went shopping for the lighthearted and whimsical. I found myself also trying to be practical for Sara. (what DO you get for someone who is quadraplegic?) Then I remembered, lighthearted and whimsical would work just fine for her, too.

A clapper for Grandma, chili pepper lights for Michael, and a chia cat for Sara. A jar of pickles for Grandma, a clapper for Michael, and a dragon kite for Sara (her chinese zodiac is the dragon). Crosswords for Grandma, Make magazine for Michael, and 1000 Places to See Before You Die for Sara. (she wants to travel...now I can read about these places to go).

While I went to the hospital to do Christmas Eve with Daniel and Sara, Michael and Grandma Sandy had christmas here together. They had a blast together and Michael got to have a one-on-one Christmas and tons of silliness. (the two of them are about a pair of 8 year olds if I've seen anyone...)

Christmas Eve with Daniel and Sara was a bit more somber, sad. Its hard to be happy, chirpy and such when all you want is for this person to be out of bed, tearing open presents, giggling like she does. The pain of just how unfair this is, and of what she is being robbed of, came palpably to the surface - I could taste it. But, still, trying to make it something special for the two of them, you swallow it and start singing christmas carols you can't remember the words to, and hang more decorations. She seemed to enjoy it well enough, given the circumstances.


She's still a kid, even at 19, and loves to be silly. Gets so happy at christmas. Is always up for silliness and whimsey. I hate that I can't fix all this...

Christmas was for the rest of the family. Grandma Sandy, Michael, and I went up to see her. And, we brought an extra special surprise for her - Dusty.

When I asked Sara what she wanted for Christmas a few days ago, she spelled out H O M E. Broke my heart. So I brought her the one thing from home she'd most want to see...her cat.

When we arrived she broke into the biggest smile when she saw her brother. I have never seen Sara so happy to see her brother. It was obvious that them being together today meant a lot to them both. Seeing that made my day. I have always cherished when my children visibly enjoyed being together. That is a special bond. But she was so happy to see him, and followed every movement of his.

After Michael opening her presents for her, and acting the absolute fool with them (and a little Vanna White...) she got a bit tired. She was fighting taking a nap, but it was obvious she was wiped out. So, I went to the car to get her cat.

I ran the de-shedding comb over him in the parking lot. Good thing the wind was blowing, because the pile of fur I was getting off of him was enough to cover another cat...

When I brought him into her room the smile started and she never really did take her eyes off of him. I helped her stroke him, and he just sat and purred. When her ventilator went to alarm later on, he was jumping off the bed bolting for the cat carrier. I ended up putting the carrier on the bed, and her arm inside it. Then the cat nestled down on top of her arm and went back to purring. He had his girl. She had her cat. Grandma Sande, Michael and I just sat off to the side and let her have the fur therapy and peacefulness only her cat could give her.

At the end of the day, she was happy and content. Although it was by no means an easy Christmas, I think the family came through it ok. I think we were able to keep as much of our spirit and traditions in it as possible, within the limitations of environment and current condition of Sara, and still manage to give Michael a fairly special time just for him.

I am exhausted, mentally, emotionally and physically. My Santa (Don) was so sweet about our lack of time together today. He is very understanding, but I don't like that he has to be right now. He just really helped keep me moving and trying to make this the best christmas season I could for my family.

In the end, we still did celebrate life and hope. And you can't get much better than that...