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…

Secondhand smoke is deadly. Dangerous. Downright dirty. So what’s the news? Check out this JAMA abstract to see the facts of the effects of secondhand smoke on those with CF.  Another article here.

For those living with cystic fibrosis (or other lung diseases, for that matter), secondhand smoke is, essentially, the devil. Now, I’m not here to tell you to quit smoking (though you should), but I am asking you to consider the effects on those around you the next time you light up.

…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)

… and then be faced with the daunting reality that your beloved lives with a condition that will not get better; that will continue to ravage the basic functions we rely on… namely a condition that takes our breath away.

Check out this blog from Tricia’s husband… and their very current and very personal journey toward impending parenthood and lung transplantation.  One of these conditions is hard enough when you have CF; both, together… well… life can be made of miracles, right?

I serve as one of three volunteer parent coordinators for a program at our local children’s hospital called Project DOCC. The program was started by three moms out of New York who were caring for their chronically ill children. The curriculum is designed to teach pediatric residents about living with chronic illness or disabilities within our homes and communities. It’s a revolutionary approach that has been getting rave reviews not only at our hospital, but now almost 30 hospitals across the country, and even one in Australia. Using a combination of home visits, parent interviews and a Grand Rounds Panel Presentation, we offer a well rounded perspective on “Living in Chronicity”. Please note, however, that this is not CF specific, but the implications for chronic illness certainly apply.

Today I had the extreme pleasure of moderating our Grand Rounds Panel Presentation to the medical staff of our hospital. We had 150 people in attendance, which apparently sets some sort of record in the history of Grand Rounds. The audience was captivated, the panelists were phenomenal and it was truly a remarkable experience for all in attendance. We received a standing ovation at the end, which also marks another first for Grand Rounds. Very few people were able to leave with a dry eye.

How fortunate we are to be living in a time and place where the medical community is taking a larger, broader perspective on living with chronic illnesses or disabilities. If you have an opportunity to bring a program like this to your hospital, I highly recommend that you consider doing so. It’s been a very rewarding experience ~ from both sides of the fence.

As life would generally have it, we don’t get to pick and choose the most opportune times to require medical assistance, but chances are that if there is a major holiday involved, the probability that we need a doctor goes up exponentially.

Allison had been struggling all week with something I just couldn’t quite put my finger on. I knew her sinuses were bothering her, but that was nothing new. Twenty minutes before we were supposed to walk out the door to head to Thanksgiving Dinner, Allison lay there writhing in agony; her tummy was in awful pain. I knew this was serious, as she will rarely fess up to anything that hurts her. Earlier in the morning, we had noticed a lump just to the right of one (of the many) surgical scars across her abdomen. Afraid of a hernia that could be causing problems, we thought it best to have her checked out. Without calling any of the numerous doctors on our list, I sent my husband and older daughter off to dinner and I took Allison into the ER. Thankfully, the ER was slow…slow…slow. There were next to no patients and we got a room right away.

I know the protocol: the nurse comes in with another tech to do the vitals while they ask me general questions about why I am there and what medications she might be taking. I whip out the sheet that lists meds, strength, dose and schedule. They make a comment about how wonderful and convenient that is and ask to make a copy; I assure them it’s really nothing and they are welcome to have it. They tell me that a doctor will be in shortly. I sigh heavily and take a seat next to the gurney, where I try to occupy Allison with books, or in the case of Thanksgiving Day, the Turkey Craft  that the Child Life lady, Jodi, gave to us. The doctor comes in and shakes my hand and asks me what is going on.

This is the part that I always get stuck on. I never know how to answer their question ~ I don’t have the advantage of knowing whether or not they have actually taken time to read Allison’s intense history before walking in the room, or if I’m expected to offer up the Cliff’s Notes version of the entire saga. So I tread carefully, asking them what they know about Allison. With mixed results, they generally have the basics and I have to fill in the gaps. I have found that they further we get into our journey, the more respect they seem to have for us Seasoned Veterans of ER Visits.

They all marvel at how well Allison cooperates with having her vitals taken and how she doesn’t cry during the examinations; how much she giggles when they press on her tummy. There is no other way of life for Allison. She is so used to having her blood pressure taken, she could practically do it herself.

Thanksgiving Day was no different.

The Doctor ordered an x-ray of her abdomen, as I expected. The results were clear ~ she was majorly constipated. This information surprised me given the number of trips to the bathroom Allison made over the last week, but also instilled a deep sense of fear that we are headed down a road we already traveled exactly two years ago. The Doctor felt that the lump on her tummy was simply because of how full she was, although admitted it could be the start of a thinning area for a hernia to develop. Great.

We’ve spent the last four days giving our 4-year-old adult doses of Miralax, among other unpleasant treatments for such ailments. While marginally better, she still is not tolerating her tube feedings well at all and, as a result, has had very little nutrition over the last five days. I’ll call the doctor’s office again in the morning to check in and see if they’ll do another x-ray for me… I’m curiously scared to see what they might be able to uncover at this point. I’m seriously concerned that we may be dealing with a recurrence of her adhesion issues.

So for Thanksgiving, what should I be thankful for? I am eternally grateful that the medical expertise we need is only 17.8 miles away, 24 hours a day. I am thankful that Allison is home with us and not in the hospital. I’m thankful that Allison has a disease that so many people are working toward a cure for… that the science is so promising… that I’m a part of the action. I’m thankful that my husband and older daughter had family to see on Thanksgiving and that Allison and I got to share a holiday with the fine people who gave up their own family festivities to provide care to those who needed it.

We are a blessed family, indeed.