A few days ago, the boys and I had a lovely RTE producer into our house to film a segment on an upcoming Christmas special (It will air December 10th). Even though we delayed the filming by a week, it didn’t change the purpose of the delay: Brendan Bjorn was…and is…still bedridden with a pressure sore.

This Christmas is the first time he has not been able to see the Christmas tree the day we put it up. And I wonder, how long will it be before he gets to come into the sitting room to enjoy it?

Now, for those of you reading this that think it’s no big deal, let me tell you it is in fact a very big deal. Christmas trees are one of Brendan’s most favourite things in his limited world. He could, and does, stare for hours at the tree with all the bright lights and shining decorations, smiling and laughing at what I’ve always thought must be angels that only he can see. It is pure and absolute joy! But this year, he hasn’t yet seen the tree, and that hits deep into my heart.

Why? Because I know that each Christmas may well be his last. 

I have been willing with all that I am for his pressure sore to heal. I have been guarding it, dressing it, cleaning it oh so gently, protecting it…but still it remains, now over a month. I’ve even cancelled 2 days of overnight respite because it would mean him having to sit in his wheelchair for over an hour to the respite house just to get there. I cannot, I will not, risk it doing more harm, no matter how desperately I need a break…and I need a break!

And with this, part of our usual Christmas magic has ended.

This morning, another part of Christmas ended, and it found me sobbing as the passing of years has again stolen something precious to me. Declan, my clever, loving, precocious 9 year old son, now knows that Santa doesn’t exist. I knew this day was coming, but I had held out hope that we would make it through this Christmas still holding onto that magical belief. But, it wasn’t meant to be. “So, you’ve been Santa all these years…I knew it!” he said. We talked about the spirit of Christmas, the giving and loving and sharing that Santa is to represent, and that we should continue to carry in our hearts. “We will, Ma, we will.” he said to me with that gentle smile on his face, and he hugged me tight. My baby, my only child with whom I got to share the magic that is Santa, no longer believes in Santa. It is hitting me harder than I expected it would.

And with this, part of our usual Christmas magic has ended.

One aspect of this journey with a child who has a life-limiting condition is that it can often put reins on the parent from looking too far ahead. Christmas. We have this Christmas with Brendan Bjorn and that is all we can be assured of, so we make it the best, brightest, cheeriest one possible, just as we do every Christmas so far. And even though some of the magic has ended, I won’t let it steal the time I have with either of my boys – which is right now.

If I have to drag that Christmas tree into Brendan Bjorn’s bedroom, so be it. Christmas in his bedroom? Why not?!
It’s the least I can do for my child who can do so little.
It’s what Christmas magic is all about: the sharing of love.