Tuesday, 30 December 2014

We Made It Through Christmas

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". 

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. 

Thursday, 18 December 2014


Hi my name is Jenny, and it's been over a month since my last blog (cue:  "hi Jenny")  I have no idea how to get you all caught up especially because the reason I am so very far behind is that we have been so super busy.  So, I am going to use some pictures and videos to do the job for me.  Here are the highlights:
Thanksgiving- all the cousins on my side of the family together at my parent's house, Baby Cole (my amazing godson) had his first Thanksgiving

Aunt Sarah got to meet baby Cole and none of us ever saw him again lol

Jack and cousin Graeme had a blast playing!

Then this happened:  our 10 yr anniversary hip hip hooray

along with these beautiful flowers from my awesome hubby

This, however, did not happen, because Nathan got his first fever in nearly a year the day before we were supposed to leave:

But it WILL happen, oh it will!  Our sanity depends on it!

Then this did happen, Nate's 5th birthday
baby Nate

we love Mickey this year!

We all looked at the same time!

And by far, most importantly, this happened!!!!

Today this happened- Nate's school holiday party

He did the motions with the rest of the class during a book his teacher read.  His mommy cried like a baby while the aide surreptitiously forked over the tissues.  Then he stole Chick Fil A nuggets with gluten in them from the food tray after mommy spent approximately $25 buying gluten free cupcakes for the class (since parents are no longer allowed to bake).  The end!