It was near the end of last summer when I took my girls to see a live Signing Time show at a local school theater.  Having been long time fans of Rachel and the amazing work she does for the hearing impaired, I made sure we got there early and got a front row seat… I was there with a friend and her two little girls as well.  Although Rachel was a bit under the weather, the show was fantastic and the kids had a blast!  Well, except for the fact that Allison went into total hysterics the minute Hopkins looked her way.  The poor kid ~ the cute little animated frog on Signing Time suddenly turned into a freakishly larger-than-life stuffed animal that towered over her own Mommy, even.  Allison spent most of the show obsessed with Hopkins’ exact location and making sure that she was as far away from “him” as possible!

As expected, there were a large number of kids with special needs, including my own.  I had brought along her feeding tube and wanted to give her some water before we left.  In true Allison fashion, she thought it wasn’t going in fast enough, took the syringe full of water and held it as high as she could ~ “see… you have to hold it up and it goes faster!”  Ahem.  Yes, I see.  Thank you.

We hung out after the show for a long time, waiting in line to get our chance to talk with Rachel and take pictures, having her sign the items we purchased.  As we eventually made our way out of the building, to the left there was a van parked in one of the handicapped spots.  There were two moms and a few kids all trying to get settled in the van.  Something caught my eye and I was staring intently.

Now, any socially conscious person would have realized very quickly that they should stop staring, say “Hi” and move along… but me?  No, I keep staring until that little voice inside told me that I was making them all uncomfortable.  Mom #2 was starting to give me the “How dare you!?!” look and Mom #1 just looked hurt and baffled by the crazy woman who so rudely wouldn’t stop looking at them.  I’m sure she thought I was staring at the child, her son, who had been in the wheelchair.  I presume she thought I was rudely curious about the little boy who was being hooked up to a feeding bag… aha!

Knowing that I had inadvertently crossed the line, I decided that I couldn’t let it go, I had to go and explain my serious faux pas.

“I’m sorry… Is that bag for the Infinity feeding pump???  I’ve been wanting one of those!”

The tension immediately released, she pulls out the feeding pump and we regale each other with stories of home health care companies and the benefits of the Infinity over the regular Enteralite ambulatory feeding pump.  I still chuckle when I think about it.  I know that I am not the first person to feel this way, but seriously, if you are curious about something, just ask.  I hate it when people stare at us and are clearly afraid to make the first move.

In the latter part of 2005, I was juggling my then 3-year-old’s need for socialization in preschool and my 2-year-old’s severe dependency on IV nutrition (TPN – Total Parenteral Nutrition) .  In order to make it work for all of us, I had to schlep Allison, IV’s and all, into preschool twice a week to drop off and pick up Kira.  Several times, Allison would be asleep, so I would have to carry her, her large black bag of TPN and cover her with blankets.  [Although I parked next to the door and could have seen her the entire time I was in the building, the chance of her spitting up and aspirating while alone in her carseat were great, so I HAD to take her with me.]  The looks I got were priceless ~ everything from plain curiosity to pity to deep concern.  You could feel people watching us, but the second I would turn to meet their gaze, I would magically find them deeply engrossed in something else.  You know how it is ~ we’ve all done it before.  Even me.

I was eternally grateful when one of my favorite preschool moms actually touched the IV line filled with Allison’s TPN and asked “What’s this for?”  I think I nearly bowled her over with the sheer volume of information that came spilling from my mouth ~ it had been pent up for so long and I was dying to tell someone there what was going on!  You could feel every Mother’s ear in that hallway straining to catch the details of our conversation.

Maybe the next time I have the opportunity to be stared at, I’ll have enough compassion for the curiosity of others to make it just a tad easier to ask me what they’re dying to know…

…on my heart and in my mind Tricia, Nate and Gwyneth. You’ll remember a few posts back when I posted “To be in Love…” about Tricia’s journey toward a double lung transplant was suddenly halted when they discovered that they were pregnant with Gwyneth. I have seen many miracles in the last four years during our own medical journey with Allison; but never have I seen anyone flourish and shine in their steadfast Faith the way I’ve been witnessing Nate’s awesome ability to chronicle their very personal and private journey. When you get a moment and have some time to really get sucked into something heartwarming, be sure to check out their blog.

… or not? That was the question.

When you “live in chronicity” (or parent someone who does), you exist somewhere between those people who can make plans and keep them and those forced to mark every “commitment” down in pencil. For example, I recently took a trip out West to visit another CF care center (details to come soon). Up until the very moment I left for the airport I couldn’t be sure whether or not I would be able to go. Would Allison be able to hold out until her doctor’s appointment on Tuesday (and is it okay for me to not go, and send my husband instead?), or would all hell break loose before then? Obviously, my choice would be to stay with her when I know that she needs me, but given the bigger picture, and the task that lay before me on my trip, that was ultimately for her benefit as well. (Okay, I’ll admit a sanity break was in order for me, too.)

I went, I learned, and discovered that, in fact, life can somewhat be managed via Blackberry and conference calls. While I strolled down First Avenue, I got up-to-the-minute details of the doctor appointment and was able to contribute my two cents from thousands of miles away. However, it wasn’t the same as being there.

The news from that appointment: she has to get better in 14 days on oral antibiotics, or we’re putting her in… as in, admitting her to the hospital for no less than 14 days for IV antibiotics, lots of chest physio (to clear her lungs), rest and nutrition. Nothing like a little pressure hanging over your head. You may or many not be home for two weeks in the next several days. Left in limbo, you don’t know whether to buy groceries (watch those perishables), pack your bags, or beg to just be admitted now and get it over with. Get the the laundry caught up, make sure the bills are paid, call your friend and inform her that you may or may not be able to help her out after all (sorry about that ~ I know we set this up months ago, but what’s a mom to do?), and sit and wait. I can’t RSVP for the bachelorette party and bridal shower for a dear friend three hours away because I just don’t know what is going to happen.

Living in chronicity extends far beyond what happens in your immediate family; you learn who your friends are based on their reactions when you have to cancel plans at the last minute and when extended family lives in limbo with you because you just don’t know what could be coming down the pike. Not to say, however, that life is ALWAYS like this. We just hit a pretty rough patch every few years. And the reality is that no one is guaranteed anything. Ever.

So how does someone “Live in Chronicity?” With all of the humor, determination and stamina that one can possibly muster. Fueled, of course, by the lovely and innocent reason behind it all:

For those not in the “know” ~ “sixtyfive roses” is often what little kids call their disease when they find “cystic fibrosis” too cumbersome to pronounce. The term was coined by the Foundation and has been used for decades, citing this story about a CF mom and her young son.

I just completed reading Sixtyfive Roses: A Sister’s Memoir by Heather Summerhayes Cariou by nearly plowing through it inside a few days time. This powerful tale speaks to anyone who has been touched by chronic illness in general and not just CF. The way the author is able to completely draw the reader into the emotion and reality of the situation leaves you feeling very much a part of each interaction.

Heather’s little sister, Pammy, was four years when she was officially diagnosed with CF, and her family was told there wasn’t much time.  Heather and the rest of the Summerhayes family did the best they could to make things as normal as possible, for as long as possible.  This blatantly honest tale of how Heather weathered the storms of her sister’s illness is especially poignant in as much as you can feel her anger, her rage, and her love throughout the book.

Heather expertly describes how her family’s reactions and the reactions of those surrounding them affected their every day living and what coping with these issues did to their family.  Although their story takes place a few decades ago, the reality of the situation transcends time and is completely applicable to today.

Pam defied the odds and finally lost her battle in 1980, when she was 26 years old.  Through her own determination, the determination of her family and the constant love and support from the medical staff and friends, Pam’s life was very full and very inspiring.

I would highly recommend this book to anyone looking for an inspiring tale.

(visit the website)