‘Tis the Season! — 5 Minutes for Special Needs


                               

Here it is again! It’s November!

Time to pack up all the summer clothes, the picnic blankets, and turn the clocks back.

I don’t know about you, but I often lament this time of year for one other BIG reason: hibernation.

My little dude has junky lungs. His immune system is just not up to snuff. Therefore, he catches everything that comes down the pike.

So, November to March we practice social distancing and self-imposed hibernation. My family has a large coronation ceremony on Halloween where they declare me Queen of the Lysol Can, and bestow on me the Scepter of Clorox Wipes. Hand sanitizer is placed in various and sundry places in the house.

While this may sound fine and dandy…there happens to be a few big issues between November and March. Namely: Thanksgiving, Christmas, and New Year’s.

We have spent the past couple years making friends and family mad because we just can’t take him around a bunch of sick, hacking, sneezing people. While I would love to see the family, and visit with friends—I would hate to see my son lay in a hospital bed because of it.

I need help. I’m not good at tempering my sarcasm (no, really?) and getting our friends to understand. They seem to think that it’s no big deal. I mean, you know, “everyone needs a pound or two of germs…stop over-reacting, Heather!”

Are you a social distancer? A Hibernator? Wanna come over for Christmas dinner?

Email Author    |    Website About Heather P

Heather is a mom of two, wife, and nurse educator doing what she can to save the day! She lives in Orlando where she is routinely spotted driving while singing ABBA--all on a mission to advocate and educate!

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1 Janet November 5, 2010 at 1:11 pm

Distancing was easier to explain when our son came with a ventilator. :)

We *are* cautiously venturing out some this winter, for the first time ever. This is, after all, the big test: can we make it through the winter without ending up in the PICU? After all, the trach is almost certainly coming out this spring, and it’d suck to take it out in the spring and discover next winter that it should have stayed.

Don’t get me wrong – we’re not talking daycare here. But we are going to continue outpatient therapies and gymboree, because we also need sanity, and a rambunctious toddler without a space to run and climb….would be bad for all of us this winter.

We’ve ticked off the family. We will continue to tick them off….that’s not going to change for us, trach or no, so we’re just learning to live with it.

2 HeatherP November 5, 2010 at 1:23 pm

We’ve ticked off pretty much the entire city…so, we’re just muddling through too.

I’ll send extra good vibes and hopes for all of us to have a PICU-less season!

3 Deana November 5, 2010 at 2:13 pm

Hibernators Unite!

Max’s birthday is Halloween, so that’s usually our last hoorah with seeing a bunch of people. We haven’t been with family for 3 years for the holidays. Every time we would try, previously, he would get sick.

It doesn’t get easier, they still ask, “Are you coming home for the holidays?”. And every time we have to remind them, no, Max can’t be around the cold and flu germs. (most of my family don’t get flu vaccines, and Max due to his allergies to the preservatives in vaccines can’t get any of them!) So, we hang out just the 3 of us. It’s made the holidays seem less than what they could be, or should be.

Sometimes I think we’re crazy for keeping to ourselves so much, but then I remember 6 weeks of illness 2 years ago…started from the “little cold” his cousin had. And I remember the month long double pneumonia that nearly got him a trach.

Yes, here’s to the queens of lysol and clorox wipes. We banish the germs from our kingdoms and keep the little princes and princesses safe.

4 HeatherP November 5, 2010 at 3:08 pm

YAY! You are hereby invited to my Christmas table. Which will probably end up being right here…the virtual kind!

My family still asks all the time too…Sigh.

5 Patrick November 5, 2010 at 6:01 pm

We’re like that with Maggi most always, but ESPECIALLY around her surgery times. We quarantine her 2 weeks before and 2 weeks after, so for a month at a time, we don’t let Maggi near ANYBODY that’s been near someone that’s been near someone that’s been near someone that’s sick. She’ll end up in the hospital knocking on death’s door… and we run into the same problems. People don’t understand, they get mad because they can’t see us… well, too bad! It’s not about YOU… it’s about my child who could potentially DIE. I’m not about to kill my child so you can see finally her in person. Look at the picture and pray for her. Be happy that you know about her at all… and that she’s still alive.

6 HeatherP November 5, 2010 at 8:05 pm

Preach it! I agree 100%!

7 KDL November 7, 2010 at 6:51 pm

We don’t have any need to hibernate…so far all of us have healthy enough immune systems to be out among ‘em. I guess I have a hard time understanding why anyone (especially family) would not be able to understand your boundaries on this. I mean really it’s very selfish, “What do you mean we can’t see you because your kid would get really sick and have to go to the hospital and almost die…” If they live nearby and if it doesn’t mean missing your own family time on a holiday perhaps you could take turns making an appearance at the family function without your child (bring recent photos, etc. to share maybe?) and take a big long detox shower as soon as you get home, but that would be about as far as I would bend on this one, if that. Set up a video chat, or send them a home video on DVD, might be some easy options. But if people get irate about it, nuts to them. They just don’t get it.

8 Kristy November 8, 2010 at 3:29 pm

I don’t know of any solution, but I agree with you 100%. People with normal, healthy children don’t understand what we go through. And they are some that actually believe we don’t work because we can’t work outside our home????

9 Janet November 11, 2010 at 11:45 am

WOW! Didn’t know that I had so much company in the winter months hibernating. My son is 15 and we’ve been doing this a long time.

We seen pulumonologist yesterday, asked if we got our flu shot. I said no, we do even better, we hibernate until spring. Got a laugh and they didn’t push it.

For my b’day in Sept, I always get the must have goodies for winter…sanitizer, kleenex, clorox wipes and we run an aromatherapy pot. The concoction I use is protect me blend. It helps us out.

Just found your blog. I like it! ;-)

10 HeatherP November 12, 2010 at 11:01 am

ooh. thanks! I’m googling an aromatherapy pot now!

11 Jo November 11, 2010 at 4:37 pm

Just wanted to send you positive vibes for a healthy germ free winter season. Last year we were in the place of waiting for a diagnosis. Closer on that although not definitive. I learnt a whole new lesson in keeping healthy when swine flu reared its head. We retreated and stayed at home alot. Some people didn’t get it. But this was an undiagnosed neuromuscular condition which we are figuring out as we go along and this was a flu no one knew about. We are fortunate as it is on the milder end of the spectrum of illness but I also work hard to keep him healthy. So I say do what is right for you and your family. That is what matters as you are the one who has to look after him if he gets sick.
I will join you at the virtual Christmas dinner- at least there would be no dishes!!!

12 Jo November 12, 2010 at 7:14 am

Another thought it is not just about keeping the kids healthy. What about Moms, Dads, brothers and sisters. It is such much harder to look after someone if you yourself are ill or others in the family are too. Here’s to everyone staying healthy and germ free….

13 HeatherP November 12, 2010 at 11:00 am

You’re totally right. I harp on my husband about washing hands/sanitizing at work. But I homeschool my oldest, so she’s on the straight and narrow! :)

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