Happy day after Christmas to you!  We made a big effort on Christmas Eve and went to a church down the road where they have a child-friendly service.  As we walked through the sanctuary, Cody reached out and demolished an entire display!  Candles crashed to the floor and nearly set the carpet on fire.  Glasses and candleholders shattered on the ground.  The table cloth hung off the side.  The table tipped over.  Yikes!!!  We made our presence known!  But we managed to find a seat and Cody sat through 3/4 of the service before he got to be just too noisy.  Casey stayed through the whole thing and even got to hold a candle and light other's candles as we sang silent night. 

Ken Hutcherson was up front - he is the Pastor of Antioch church in Kirkland.  He's a former pro-football player and has been battling cancer for years.  He did an interview with James Dobson on Focus on the Family that was amazing this month.  If you have a sick child, or are facing an extreme suffering, it's worth a listen.  Ken talks about the 'Privilege of Suffering' which is a radical notion!  I found it inspiring.  Here's the interview link http://www.focusonthefamily.com/popups/media_player.aspx?ShowPath=Focus

Don and I were wiped out leaving the church - it is quite an endeavor to take both of them anywhere - but a service where you get dressed up and try to keep them both occupied is about as tough as it gets.  But we did it!  Then we came home and made a steak dinner, decorated stockings, and Casey got to open up 1 present:  Mr. Potato Head!  He slept with the potato-man and loved loved him! 

Next morning Casey eagerly ran into the kitchen to find what Santa left!  He got a Veggie Tale play-doh set, games, his own Bible, and lots more.  Cody got some clothes, and some toys.  It was filled with joy and sadness....the usual mix.  I wanted Casey to see that Cody was equally important so we made Cody a stocking and made sure he had an equal amount of gifts under the tree.  But sadly, when it came time for the stockings - which were mostly edibles - I packed Cody's full of applesauce and veggie chips - the only two food items he can eat since he is primarily tube fed.  He gets no treats, no sweets, no new flavors.  His tummy can't tolerate them.  But it was important to me that Casey see me spending equal time on a stocking for Cody - even if it was full of chips and applesauce.  And every time it was Cody's turn to open a present, the three of us (Don, Casey and me) stood up and walked to wherever Cody was in the house with his present - and opened it with him.  Cody, of course, never even looked our way.  He was oblivious to any gifts.  But I want to impart to Casey that Cody is equally special. 

It would be easy to just let Cody 'do his own thing' most of the time.  He's usually oblivious to us.  But I try to hard to help Casey learn that trying to enter brother's world is important.  And I want Casey to see us spending as much time with Cody as we do with him...on Christmas and every other day too.  I even try to foster that when people come over - because it's everyone's knee-jerk response to fawn over Casey and play games, read books, chase him around.  And it's easy for most to just kind of let Cody 'be'.  And I agree, it takes work to connect with Cody.  But I am here to tell you, it's possible.  He is not just a vacant, rasberry blowing little boy who is somehow less worthy of having time spent on him than Casey.  It is possible to have a deep, meaningful relationship with Cody if you're willing to spend as much time working on it - as you are willing to spend time with Casey.  The key to connecting with Cody is sitting ON the floor in the living room.  He rarely sees anyone who is above his head level.  But if you plop down in the center of our living room, he will approach you a dozen times - giggling - climbing on you - asking for a noise in his ear.  It breaks my heart when I see people kind of sit on a chair and watch him - and just comment on how sad it is.  I want to say, 'jump in!  it's not so sad if you would spend half the time with him that you do with Casey!'  Cody is a wonderful, bubbly, energetic little boy who WANTS to engage with people.  He just can't really do it on his own - he needs someone to take the time to work at it.  To find a rhythm of their own.  But yes, it is work.  And it's my goal that Casey is never one of those who just sit in a chair and watch Cody blow raspberries and think it's sad. 

I know it is a hard balancing act with siblings of special needs children.  You don't want them to feel like your whole life is swallowed up in the child with the disability.  At this point in our lives (and I'm guessing it changes as the healthy child grows and matures) it's probably more of a danger that Casey might think Cody is 'less important' or 'easy to ignore'.  Casey gets all the adoration, all the attention typically - and I fear there is the danger he will notice that Cody usually just gets a pat on the head and a sad comment.  So we do what we can - especially on holidays - to impart Cody's significance to Casey.  And we are so grateful for the friends who model that as well. 

We went to a wonderful gathering on Christmas day - where the folks really 'get it' and Cody is loved and adored as Casey is.  Cody had been up at 4am Christmas morning so he and I were both grumpy and tired.  So it was nice that there was  no pressure to be 'on' or to even take a shower!  We just showed up, ate great food, sang carols, and watched as members of our church family blessed us and our children.  Cody fell asleep about 1/2 way through the evening so we got to play games for the first time in a long while!  Usually we are out the door early because Cody goes stir crazy after about an hour anywhere other than our house.  Wow was it nice to RELAX and just 'be' for once.  Thank you Kim and family for your sweet hospitality!

We chose not to travel this year because - truthfully - we can barely manage and survive our life in our home.  It is just so incredibly stressful to take it on the road.  By far the worst consequence of traveling is sleep.  We get just a few hours of sleep a night at home when we have everything working 'for' us.  When we're in someone else's home, there's a change in environments - the fact that Cody has to have our windows blacked out because 1 ray of sunlight and he's up for the day.  Plus he and I sleep in a king bed together because he thrashes all night - and the bed is pushed up against a wall so he won't roll off the side.  Plus we have to travel beginning at 8pm because Cody goes ballistic after 1/2 hour in the car.  We have done it in the past - and it has taken a week to recoup the lost sleep, get back in our routine, and get Cody back to 'normal' once we're home.  It's funny because when we have traveled, we often hear, 'well that wasn't so bad!'  When Don and I are screaming inside:  'we haven't slept 1 hour in the entire 3 days we've been here!' or 'we are so stressed out we're about to fall apart chasing him all day and all night in a home that's not 'cody-proofed!'  One person on my side of the family has become famous for minimizing our apprehensions about travel and says we should just 'live a little' and 'go with the flow.'  She has no idea what it takes to go on the road.  She has no concept of mitochondrial disease and how much extra energy it takes for Cody to cope with new surroundings, less sleep, unfamiliar faces, no swing, no jacuzzi tub (both things he uses all day to stay regulated.)   Not to mention that with all of his trips to the E.R., we just don't feel safe very far away from our Children's hospital where he is known, and where orders are in place depending on the reason he's brought in. 

Other special needs families know - that at some point - you just have to start creating some boundaries so you don't go crazy.  Many in my own family don't understand - and I've had to become okay with that.  The ones who are offended haven't taken the time to really understand our life or Cody's disease.  Others in our family are incredibly gracious.  Sometimes we compromise and Don will just go to visit with Casey after the holidays.  You do what you have to do to keep the boat afloat.  And I can tell you that with our current all-nighters with Cody - I would have fallen apart if we were on the road.  Every single night he's up for hours.  It is crazy making.  I have trouble putting sentences together.  I stumble around.   

So all that to say, it was very non-stressful to be here for Christmas.  We needed it.  I hope our life and especially our sleep stabilizes at some point to allow for travel again.  We'll have to wait and see.  Truth is, we don't know how many Christmases we have with Cody.  It is our gift to him to let him stay where he's comfortable and try to give him the benefit of as much rest and sleep as possible without making him navigate a new bed, a new house, hours in the car screaming, etc.

Here are some pictures of the day.  love to all and thanks for checking in!