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The Ups and Downs of Christmas for Our Special Needs Family

Christmas has been my favorite 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 I’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 five ups and downs. Ready? Here goes:

1. 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 11th year. Eleven… and still in the same section. Let that soak in, please, because it is hard. Christmas (and birthdays), while lovely holidays, can 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.

2. Because with Christmas comes the New Year, it’s also 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, many of our kiddos absolutely adore the bright multi-colored lights?! So bring on the decorations… oh wait, we already did — in November!

3. It’s that time of year for sickness, which means we often avoid crowds and maybe even neighbors if we know their children are ill. Our healthy kids are sick half the time, so can you imagine what it does to our fragile angels? 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. A cold in our angel turns into bronchitis or worse yet, very quickly into pneumonia. Pneumonia means the hospital, and it can mean far worse for our child in an extremely short amount of time. So, please understand this: we are literally trying to save our child’s life.

4. Medical supplies might come in quite handy. Roasting a turkey for Christmas? You could ask any of us parents for a 60 ml 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 10 ml syringe filled with frosting works perfectly for the finer artistry skills required for the best gingerbread men around!

5. Christmas is for the siblings, too. 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 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.

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.

Follow this journey on Transitioning Angels.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness during the holidays. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.