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…

http://checkingpockets.blogspot.com/ 

Let’s hope so!

There’s been a lot of buzz about the promise of this exciting drug to enter the realm of cystic fibrosis treatments. As it enters its second Phase III trial, the excitement is palpable. Will this change the future of the cystic fibrosis in our youngest population, potentially staving off the effects of lung damage by helping to prevent it in the first place? While the future of denufosol remains unclear for the moment, the long term implications of potentially finding such a drug is giving hope to thousands.  Another reference here.

This news burst follows closely on the heels of another major advancement for those with cystic fibrosis who have what is known as nonsense mutation (approximately 10% of the CF population).  A drug known as PTC124 continues to show promise for these patients as well as some patients with a certain form of Muscular Dystrophy.

In hopes of continuing the momentum and helping to find a cure, I have once again activated my team, Ally’s Allies,  to join the Cystic Fibrosis Foundation‘s Great Strides fundraiser.  Join my team, form a team of your own, or simply donate.  Your support makes the difference for these and other drugs to be discovered and used to help save lives… thank you for your help!

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.

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:

The CFF wins again… sort of. It’s no small feat for the Cystic Fibrosis Foundation’s care center network to be recognized by The National Institutes of Health as a model for the delivery of care for those with a chronic disease. Even more surprising for some was the bold move to make public the data on each of their care centers. Read the highlights here.

I directly attribute the great achievements and recognition of the CFF’s efforts in providing quality care while using innovative means to search for a cure to the extraordinary vision of the President and CEO of the Cystic Fibrosis Foundation ~ Robert J. Beall, Ph.D. I’ve had the honor of meeting Dr. Beall on a few different occasions and I have to say I’m massively impressed with his dedication to finding a cure for my daughter. I realize he’s the frontman for a much larger team of players, but it means something more when you’ve actually seen his passion up close and personal. Which is why, when I get the form letter email from the Foundation about what Dr. Beall has been up to, I take note of what he has to say. I hope you’ll take this plea seriously, too. Today’s form letter read something like this:

Dear Friend,

Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation, testified today before the Small Business Committee of the U.S. House of Representatives. He urged the committee to support research of rare diseases, such as cystic fibrosis.

Click here to view Dr. Beall’s testimony.

Specifically, Dr. Beall asked Congress to reauthorize the Small Business Innovation Research (SBIR) program, which provides grants to small biotech companies. He also urged Congress to dedicate a portion of these grants to companies interested in building drug discovery and development programs for CF and other rare diseases. Congress must reauthorize the SBIR program before it expires in September.

You too can make a difference—and inspire others to take action—by building a powerful CF Advocacy Task Force. Here’s how:

1. Register to be an Advocate.
   You will be notified when your involvement can make a critical difference.
2. Ask 5 friends or family members to sign up.
   As Advocates, they will help ensure that our agenda makes an impact in Washington, D.C. There is power in numbers.

Thank you for supporting our important mission. Together, we are adding tomorrows every day to the lives of those with CF. Sincerely,

Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
(800) FIGHT CF
E-mail: publicpolicy@cff.org
Web: www.cff.org/GetInvolved/Advocate

P.S. Remember—register to be an Advocate and ask others to sign up!

However, as this article points out, consuming enough calories in a day can be, well, consuming.

*Side Note:  While the article points out that it gives the person with CF pretty much carte blanche to eat even the emptiest of calories, more recent research for the CF diet has emphasized the use of “good” fats versus “bad” fats and trying to consume larger quantities of “healthier” calories, including a diet rich in fruits and vegetables.    

I was overjoyed to find that she not only understood the concept I was proposing, she had already begun working with other groups with various diagnoses to implement presentations specifically geared toward certain medical conditions. Maggie Hoffman, my hero and esteemed visionary, has agreed to partner with me to develop programs appropriate for Cystic Fibrosis Care Centers across the country. What a phenomenal endeavor we have agreed to undertake.

There remains a tremendous amount of work to be done – all in due time.

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)

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?