We survived Christmas.
At home. That is basically the
best I can say. This is the first time
we have had Christmas at home in 3 yrs, since the year the boys were diagnosed.
We have been leaving and going to the
Outer Banks- it was a good way to just change the setting, reduce stimulation
for all of us, and escape the bad memories.
We decided we might be ready to stay home this year, see our family, try
to create new memories.
Here is a flashback to two years ago:
Tonight John and I went to our marriage
counseling session. It's a very touchy time of year for many people, and
we are certainly no exception. As much as I am looking forward to
Christmas, my mind is still somewhat stuck on where we were as a family last
year- there is only one word that fits- reeling. There was not one aspect
of life that was stable. We were still working on accepting the boys'
diagnoses. We were changing diets, initiating many new therapies.
Experiencing major financial strain related to the boys' medical needs.
And of course going through marital strife. The thought of even
celebrating Christmas last year was overwhelming- I know I just wanted to crawl
under a rock and stay there.
Alas, last year John and I were not nearly as wise as we are now. We tried to make a nice holiday "for the kids". I have come to realize that that phrase means nothing if mom and dad can't survive the experience. The boys can not enjoy their holiday without us- they need us even more than most kids need their parents. But rewind- we hadn't realized this yet. And so we tried to keep up appearances, aka do everything the way we always had, including a long-winded dinner at a restaurant on Christmas Eve, church, and then hosting a big Christmas dinner at our house the next day. Bad, bad, bad. I preordered the boys' dinner at the restaurant to ensure it was gluten and dairy free, and the food was brought out basically right away when we got there- noone in the family ordered for an hour after that. Result- meltdowns from both kids, picture Jack falling out of his chair multiple times, hands over ears, crying/yelling about all of the noises, Nathan banging his head on the table. I carried him into the next room and put him down thinking maybe if he could walk around....he proceeded to lie down on the floor and bang his head some more. We tried, we really really did. The pressure was just too overwhelming- we left before dinner was served, we skipped church. We went home and we both cried. For our family, for the fact that we could no longer have a dinner out, for the feeling that no one in our families really understood what we were going through.
You would think that after this we would cry uncle for Christmas day. But no, we pushed on. We had a lovely Christmas morning, even had fun doing some of the cooking. I will not even attempt to describe the rest of the day, so I will just say that it was one of the worst days I can remember- and a definite low point for our family. I didn't feel like we could carry on at all after that point.
Yet here we are- stronger than ever. We definitely learn something from every experience in our lives. Well here is what I took from this- sometimes pretending is not ok, it's not the right thing to do. There is no way to "protect" our extended families from our "new normal". We can't do the same things anymore. And to say that we were doing it for the kids is crap. They certainly weren't enjoying the restaurant, they didn't give a hoot about a standing rib roast. They would be happy with grilled cheese and chips. Our marriage counselor described last year so concisely this evening. He said that last year, we were like the violin players on the Titanic, who continued to play as the ship sank to give the other passengers a sense of comfort/normalcy. It was torture for us, and did it help our families? Not at all. I am sure the violin playing did nothing for the passengers as they fell to their deaths either. Did those violin players die? Umm, pretty sure, yes. So it didn't really work out for them either. Sometimes, you just have to jump ship. Circumstances change- accepting this is often the hardest thing to do.
Accept it we have. We are shaking things up this year big time. We are having a Christmas that our family will enjoy- most importantly, one that will be good for the kids. We are focusing on the progress and growth in our family- and we are acknowledging that what was good for us a few years ago is no longer ok. We are being "us".
Alas, last year John and I were not nearly as wise as we are now. We tried to make a nice holiday "for the kids". I have come to realize that that phrase means nothing if mom and dad can't survive the experience. The boys can not enjoy their holiday without us- they need us even more than most kids need their parents. But rewind- we hadn't realized this yet. And so we tried to keep up appearances, aka do everything the way we always had, including a long-winded dinner at a restaurant on Christmas Eve, church, and then hosting a big Christmas dinner at our house the next day. Bad, bad, bad. I preordered the boys' dinner at the restaurant to ensure it was gluten and dairy free, and the food was brought out basically right away when we got there- noone in the family ordered for an hour after that. Result- meltdowns from both kids, picture Jack falling out of his chair multiple times, hands over ears, crying/yelling about all of the noises, Nathan banging his head on the table. I carried him into the next room and put him down thinking maybe if he could walk around....he proceeded to lie down on the floor and bang his head some more. We tried, we really really did. The pressure was just too overwhelming- we left before dinner was served, we skipped church. We went home and we both cried. For our family, for the fact that we could no longer have a dinner out, for the feeling that no one in our families really understood what we were going through.
You would think that after this we would cry uncle for Christmas day. But no, we pushed on. We had a lovely Christmas morning, even had fun doing some of the cooking. I will not even attempt to describe the rest of the day, so I will just say that it was one of the worst days I can remember- and a definite low point for our family. I didn't feel like we could carry on at all after that point.
Yet here we are- stronger than ever. We definitely learn something from every experience in our lives. Well here is what I took from this- sometimes pretending is not ok, it's not the right thing to do. There is no way to "protect" our extended families from our "new normal". We can't do the same things anymore. And to say that we were doing it for the kids is crap. They certainly weren't enjoying the restaurant, they didn't give a hoot about a standing rib roast. They would be happy with grilled cheese and chips. Our marriage counselor described last year so concisely this evening. He said that last year, we were like the violin players on the Titanic, who continued to play as the ship sank to give the other passengers a sense of comfort/normalcy. It was torture for us, and did it help our families? Not at all. I am sure the violin playing did nothing for the passengers as they fell to their deaths either. Did those violin players die? Umm, pretty sure, yes. So it didn't really work out for them either. Sometimes, you just have to jump ship. Circumstances change- accepting this is often the hardest thing to do.
Accept it we have. We are shaking things up this year big time. We are having a Christmas that our family will enjoy- most importantly, one that will be good for the kids. We are focusing on the progress and growth in our family- and we are acknowledging that what was good for us a few years ago is no longer ok. We are being "us".
Long story short, we weren’t ready to stay home. Or at least, my husband and I weren’t. It’s amazing how being in a setting where
trauma has occurred can affect you.
Nothing bad happened, but I had extreme anxiety and depression throughout
December. It was almost
immobilizing.
I guess the positive is that nothing happened. We made it through the day with no adverse
events. Other than the typical autism
meltdowns, which would have happened no matter where we were. I was in tears for quite a bit of the morning
and just very shaky, went upstairs to try to calm down, and John followed me up
the stairs and handed me a mimosa. I am
NOT a drinker. But there are certain
times in life--- well, let’s just say it helped. It made the day more tolerable. And I
love him for knowing what I needed at that moment.
We cooked a low key dinner, both sets of grandparents
visited briefly, we played with new toys, and generally just spent quality time
together. I am not ready to entertain
again- I am not sure I ever will be. And
I am not sure that we will try to stay home again next year. I had no idea that I/we would feel this
badly. BUT we made it. The boys had a good day- we had a delicious
meal, and I know that all the grandparents were very happy to see the kids on
Christmas day. We still kept boundaries
intact to protect our little bubble, but we didn’t have to shut everyone out to
do it. I guess we call that
progress.
