Christmas. It has been my favourite holiday since I was a little girl. And, it still is! But now that I am a mother of a child with a life-limiting illness, Christmas has taken on an entirely new meaning. It has a different role in my life. It is a joyous celebration, to be sure.

But it is also a reminder of how different my family’s life is.

There are a few things we’d like our friends and loved ones to know about us special needs families during Christmas. Well, there are more than a few, but I’ll try to narrow it down to the top 5 ups and downs. Ready? Here goes:

• Some of us, like myself, have been shopping in the same toy section for our precious angel their entire life. Namely, the infant and/or toddler toy section. For me, this makes the eleventh year. Eleven…and still in the same section. Let that soak in, please, because it IS hard. Christmas (and birthdays), while lovely holidays, tend to slap us parents upside the head with the stark reminder that our special child has drastic challenges and needs. It is hard, and it can hurt. We can hurt. Behind the smiles and laughter, we can hurt.

• Because with Christmas comes the New Year, it is a milestone for those of us with a child who has a life-limiting condition. Being blessed to share another Christmas, another New Year, is FANTASTIC! And so, what do we do???? We go BIG! The tree is up early, the decorations are all over the house, and some of us even have an extra tree in our special angel’s room because don’t you know, most of our kiddos absolutely adore the bright multi-coloured lights?! So bring on the decorations…oh wait, we already did…in November!

• It’s that time of year for sickness. Our healthy kids are sick half the time, so can you imagine what it does to our fragile angels? Right. As such, we often avoid crowds, maybe even avoid neighbours if we know their children are ill, because the last thing we can afford to do is have a cold come into our home. We need our friends and families to understand why we are this way, please! A cold in our angel turns into bronchitis or worse yet, very quickly into pneumonia. Pneumonia means the hospital…and it can mean far, far worse for our child in a very short amount of time. So, please understand this: We are literally trying to save our child’s life.

• Medical supplies. No, this isn’t going where you think. Actually, they can come in quite handy! Roasting a turkey for Christmas? Just ask any of us parents for a 60ml feeding syringe (we’ll give you a sterile one, we promise) and there is the perfect baster in case you’ve lost yours since last Christmas! Don’t have the pastry chef selection of frosting tubes for decorating the gingerbread men? We’ve got you covered! Again! A 10ml syringe filled with frosting works perfectly for the finer artistry skills required for the best gingerbread men around!

• Siblings…we cannot forget those amazing, compassionate, unintentionally self-sacrificing siblings of our children with a life-limiting illness. Christmas is for them, too. And maybe, it is for them ESPECIALLY. All year long those siblings have given up their time, lost our attention, and been understanding in a way that no child should have to be, but is so beautifully. So, to our dear friends and family, if you see us go overboard on Christmas morning with Santa having brought our “other” child loads more than the average kid on the block…relax. Let us. It will not, I repeat will not, ruin them. And understand this as well, please, as you go back to point number one above: It is our only chance to buy age appropriate toys. What a treat it is, albeit a very bittersweet one.

One last thing to note. Never far from our minds are the families who are celebrating Christmas without their special angel because during the past year (or even before) their angel transitioned and is now watching over them. We ache for them and we remember them. And as we celebrate another Christmas with our angel, thankfully, we hold close the knowledge that next year we could be celebrating Christmas without our angel, too. Then we hold ours a little closer, a little tighter, and we give thanks like you cannot even fathom. Life is so precious, so fleeting, and should be cherished every single day. The gift of Christmas.

To all my fellow special families from mine, I wish you a very Happy, love-filled Christmas and a New Year filled with joy!
~ Tracy