Merry Chronic Christmas! Finding The Spirit For Kids Living With Pain

That most wonderful time of the year is upon us. The frantic frenzy of holiday shoppers, and manic mamas digging deep, forgoing sleep with baking, and picture taking, and decorating and finding new and outrageous things to do with that Elf on A Shelf.  What I wouldn’t give to be part of that madness.

Yet as I watch this merriment unfolding all around me, I fight hard not give in to the melancholy. My child’s pain and suffering does not temper to any calendar. The limitations, unpredictability and home-bound isolation is still a daily challenge.  We are working hard to seize the spirit of the season, and as always, keep that positive face for our kids. But the fact is, the 12 Days of Christmas DO look a little bit different if you have a child who is not well. So I will share a snapshot of pre-holiday to do list, as my family’s seasonal situation is the reality of so many other TCAPP families this time of year.

The Christmas Tree:  Where to put it this year is a no-brainer. My 11 year old son has been sleeping and living on the recliner in our family room for weeks.  His CRPS makes even the simplest movements a challenge. The chair is the only place he can get sleep. No-brainer - THAT is where the tree will go!

Decking The Halls: When is the question.  One again, we are again on the verge of another hospitalization. We are also on the waiting list for a rehab program. Should we deck the halls before he leaves for the hospital? Or wait until his pain levels are down so that he can enjoy and take part in the decorating? Would the tree comfort his sisters while mom is away? Or serve as a sad reminder?

Holiday Cards: Smile kids. We may be a bit battered, but we are not broken. I have no idea what picture I am going to pull out for this, but I will resist the urge to send out something sarcastic. Lol!

Twinkling Lights: Although admittedly not his favorite activity, my husband does take pride once the outside Christmas lights are up. There IS something magical about coming home to tiny bright lights twinkling in the darkness and illuminating the snow. It makes the house look cozy and inviting.  This year my husband had to dig deeper because truth be told, with all the worry over the kids, who feels like decorating or doing anything merry?

Holiday Parties: It’s hard to go out and be social, when you know your child is struggling. The experts say it is important for mom and dad to keep normalcy, so we give it a try.  But like strangers in a foreign land, it is a bit hard to truly relate to many of the conversations and merriment as our life feels quite different right now.  But if I am being completely truthful, the spiked eggnog did help.

Religious Services: The sole purpose of the season and yet half of us is unable to attend. God is well aware of our situation. 

Family Get-Togethers:  We are blessed to have a family that is supportive, so for us these gatherings are a welcome respite.  But for many, these invitations can be real reason for pause if there are well meaning family members who don’t understand your child’s condition. Or worse yet, who do not treat you or your child in a kind and supportive way.  

Holiday Shopping: 1 word…. Online!  

Ok, so perhaps we are having a bit of an “adaptive” Christmas this year, but the fact that we are all together is what truly matters. An idea that I keep hammering into my kids, as I am acutely aware that many families struggle with loss this time of year.  We are still so very blessed. 

We may have to dig a little deeper for that seasonal spirit, but we are determined to seize the holiday magic in any way we can.  Cookie baking and card making certainly helps to set the mood. Elf, The Grinch and other TV specials and inviting friends over is a great way to get our cheer on.  Sending packages to the troops or others in need spreads goodwill and helps the kids to feel good. And what the heck, let’s build a gingerbread house smothered in candy…. or launch a few snowballs at each other in the house. Bend the rules, the laughter is worth it!

If it turns out we are inpatient for the holiday, I have a special bag packed with all kinds of holiday treats to help pass the time in a festive way. (I hope the nurses are cool with the new door basketball net!)

I have met so many amazing and resilient families this year, who push forward with hope and optimism in spite of medical obstacles. I would love to hear what you are doing to bring the spirit of the season to your kids.  Please share your ideas and tell us how your family is coping with the added demands of the holiday season.

Wishing Everyone A Happy And Healthy Holiday!!