Tuesday, January 8, 2013


While Christmas was great for the kids- their dad got to come home, they received all they wanted & more (people were VERY generous to us with Christmas because of John's illness. I had to buy and wrap almost nothing. I am immensely grateful for that.) and had good times with family- it was literally the LAST thing I wanted to do.

All I really wanted to do was lay in bed and cry and hate that we are dealing with the most unfair situation I can possibly think of.   How can I be losing my husband- my best friend, my partner...how can my babies be losing their daddy?  He loves them and they ADORE him.  My whole day was faking as much happiness as I could for my kids- which sadly wasnt much- and being absolutely miserable on the inside.

Christmas Day was even worse...we didnt have my parents there, so it was just us.  It was all I could do to drag myself out of bed, honestly. I think the first time a kid came to wake me up was around 630.  I told them not to go into the dining room (where we keep our Christmas tree, to keep it safe from our cat) yet.  Same kid came back about 1/2 an hour later.  I made her lay down with me.  That didnt last long, and before I knew it, I had to drag myself out of bed to capture the joy of my kids opening all their Santa gifts. 

Except I didnt feel any joy.  I was just sad.  I faked it for them, but it was hard.  Its very hard to get John into his wheelchair (he has no movement in his lower body, which just progresses as the days go by and eventually will move more and more upward until his body can no longer breathe on its own, at which point he will leave us and be gone forever) so I had to do this alone.  I have never had to watch my kids tear into their gifts from Santa alone- for 7 years I've had John by my side.  Even setting out the gifts the night before was heartbreaking...I had to do it alone and everything in my body screamed "I DONT WANT TO DO THIS!!!!!!!" 

I didnt even ask John if he was upset he couldnt watch the kids open gifts that morning.  I didnt want to know the answer.  No- I know what the answer would've been.  I didnt want to HEAR the answer.

The only consolation I had was that my mother had bought the kids Kindle Fire's as her gift to them.  We received a LOT of presents for the kids (as I said, people were SO generous to us for the holidays.  I will never be able to say "Thank you" enough to the people who did that for us) and so I gave over some of them to my mom and we decided the kindle's would be their "Santa gift".  We had bought them when we thought we'd still be going to MD Anderson and the kids would have to travel to TX for holidays, visits, etc.  They were to occupy the kids on road trips and such. Little did we know when we bought them that whole idea would get shot down, along with our hopes for prolonging John's life for a few years.

So we put the kindle's in our room under the little tree we had bought for John while he was in the hospital.  It was all of 3 feet tall but it helped him a lot when he was in the hospital so that he didnt feel so left out from the holidays.  Plus the kids decorated it and they all loved that.  When we came home we brought the tree and we set it up on our desk so that John could still look at a Christmas tree since he couldnt see our big one.

Then I called the kids in under the guise of having "found" extra special gifts from Santa under OUR little tree.  They were so excited.  I know John enjoyed watching them get all excited over gifts since he had to miss all of the others.  It helped me to feel a little bit better.  Just a little.

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