Wednesday, December 14, 2016

Have Yourself a Merry Little Christmas

I really love Christmas. I love Christmas magic.

I love everything about it. I love decorating the tree, I love giving presents (although I hate shopping in crowds), I love baking, and I love Christmas morning. I love watching It's A Wonderful Life in my pajamas and I love spending time with my family.

When I was a little girl, I would get so excited for Christmas Tree decorating that I would wind up with a terrible stomach ache. My sister would put me on the couch with white soda and saltines. I remember the smell of our Christmas tree and the look of the large colored bulbs and metal reflectors and the tinsel. If you watch the new tv show "This Is Us," their tree looks just like our tree in the 1960's and 1970's.

Carrie (Me) and Mom (Bunny) circa 1967

The "stain glass" windows were inserts made from gels that my sisters made.
Carrie (Me) decorating the tree circa 1972

I think this picture might be backwards; I don't remember the tree being in that corner.

Carrie (Me) in the pink Hard Rock Cafe sweatshirt and my sister Beth's family at my house, Christmas morning, 1987.

I love Christmas music. Growing up, I remember when my dad would buy the new Christmas music anthology album at the hardware store every year. I played them over and over.

One song that brings back childhood memories is "Have Yourself a Merry Little Christmas" by Judy Garland. Mom mom loved Judy Garland.

It's not that my Christmases have been picture perfect; they haven't. Some years, it's been a real struggle to match expectations to reality.

Christmas and Autism are a tricky combination. The change in routine, intensity of sights, smells, and sounds, and parties and gatherings are all tough stuff for someone on the spectrum. Creating holidays that were not overwhelming for Alex and helping him be a part of the celebrations took many, many years of effort. John and I always had to have a game plan. When it was my side of the family, he would take Alex home early when he got overwhelmed. When it was John's side, I went home early. Some years, a grandma would fill in with him so that we could stay longer with the other family. We'd find someone to come stay with the kids so that we could sing for midnight mass (which, at our church, was actually at midnight) because being in church at midnight was not something Alex could do, even as he grew older.

We had to teach Alex how to open Christmas presents. He loved Sesame Street, and I managed to find Sesame Street wrapping paper. He wasn't intrinsically curious about what was in the wrapped packages, so I had to make him curious. Even so, it could take a week for him to unwrap all of his gifts. We had to let him take it at his own pace. (That was torture for his older sister.)

Cancer has tried it's best to destroy Christmas. 

Dad was diagnosed with esophageal cancer in December of 1993.

He died December 23, 1994.

Alex spent last Christmas in the hospital undergoing a stem cell transplant.

This Christmas, his cancer is back and the future is terribly uncertain. I can't allow myself to think about how many more Christmases we may have.

The Christmas that dad died, Alex was four and Jessica was six. John and I were with my mom at dad's bedside when he passed. We made funeral arrangements that day, my brother stayed with mom for Christmas, and we still made Christmas for our kids. Dad's funeral was December 26.

Dad loved Christmas and as much as I missed him that year and every year since, I know he would want me to make the most of it with my own little family.

This Christmas will be the first without my mom, who passed away in July.

Last year, we were in the hospital for Christmas for Alex's stem cell transplant. That was rough. But in the end, we made our own Christmas.  I guess it was like the Who's waking up on Christmas morning after the Grinch stole everything, and they still lifted their voices in song.

Alex's hospital room door, Froedtert Hospital, Dec. 22, 2015 - Jan. 11, 2016.

Alex, Dec. 22, 2015

Alex and "Relativity" Christmas Caroling at the hospital, Dec. 2015

After Alex's stem cell transplant, he was in remission for eight months. That all came crashing down on October 17 when we learned that he had relapsed. (Setback)
Alex has had two cycles of a clinical trial in an effort to beat back the cancer. This is not a curative treatment. Our options at this point are not curative. We learned last week that Alex's cancer has responded to the treatment; a new PET scan shows that the tumour has shrunk. But things are never simple when cancer is involved. He is in the midst of a tremendous rash (covering more than 75% of his body) that is a reaction to the treatment. Next week we find out next steps.
In the midst of all of this, Christmas is fast approaching. We have all these fears and feelings to deal with. Holidays bring up wonderful, warm feelings, but they also have a way of accentuating less desirable feelings. The thing is, they are all authentic feelings. Christmas brings up so many memories.

The awful reality is that I don't know how many more Christmases we have with Alex. His cancer is one small spot right now, and his doctor says it is slow growing. We haven't been given a timeline, but I do know that it won't be as many Christmases as I want.

But I am determined to make this Christmas a memorable one. We put up the tree together. Sunday will be our cookie baking day. We have plans for Christmas Eve and Christmas Day. We will celebrate again with our "Relativity" family, just like we do every year, just like we did when Alex was in the hospital.

We will make more Christmas memories. We will envelope Alex in love. We will lean on those we trust most. I am sure that I will feel a wide array of feelings. I will have my moments of sorrow, worrying about what Alex's future will bring. I will have the bittersweet memories of my parents. But I will also feel the love that my parents gave me. I will feel the love I have for my own family.

I will feel Christmas magic.

Have Yourself A Merry Little Christmas
by Hugh Martin and Ralph Blane

Have yourself a merry little Christmas
Let your heart be light
Next year all our troubles will be out of sight
Have yourself a merry little Christmas
Make the yuletide gay                                      
Next year all our troubles will be miles away

Once again as in olden days
Happy golden days of yore
Faithful friends who are dear to us
Will be near to us once more

Someday soon we all will be together
If the fates allow
Until then we'll have to muddle through somehow
So have yourself a merry little Christmas now

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