Tuesday, October 7, 2014

If You Can't Fly...

I don’t have the faintest idea of what it’s like to be a mother, to look at this beautiful little person you created and know you have full responsibility for that tiny life that’s oh so precious. I do however, know what it’s like to be an aunt. So the thought of being a parent, absolutely terrifies me. Because I love my sisters all so much, naturally I love their little people so intensely that like I’ve said before, I’d give any one of those little monsters my heart John Q style. While I love none of them more than the other, Sal’s a little different, for more than a million reasons and I think any of my siblings would agree. But for me in particular, he’s the only nephew I have, and fortunately, I was able to take care of him quite a bit as a baby because his mother and father worked and I stayed many summer nights to help them out in the morning so that Jenny could get some much needed sleep after working night shifts in the ICU. Needless to say, Sal became my little buddy. We had a routine, he’d wake me up way too early, we’d have breakfast. Then we’d play in the living room and usually outside in the backyard. Then we would have lunch, and sometimes, he would be so tired he would fall asleep in the middle of it! So then we would make our way to the couch and watch some cartoons and there we would fall asleep, this tiny little Sal laying in my arms or on my chest. Gosh he was easy to adore. At that point Sal’s treatments and medicines were much less, and I remember not really knowing what would lie ahead for this beautiful little baby. Prayers for his health, courage, strength, for no suffering, for happiness, for a full life were frequent. They still are. Fast forward to just a couple of months ago and here I was asleep on a couch at my sisters again and Sal waking me up just as early. It was a Monday and Sal had school. But he was up and downstairs before anyone else because Sal has to do all of his treatments several times a day, including before school starts. He got his breathing treatments in and his vest time in all before Giana was downstairs. Then he had his breakfast and took some of the dozens of pills he takes every day all while catching up on the previous week in sports on ESPN. Such a little dude. I thought to myself, this sucks. It’s hard enough being a teenager and getting out of bed (well it was for me) but he has to do all this crap too. EVERYDAY. I struggled just making sure I took my contacts out every night before bed and flossing my teeth at his age. Ok who am I kidding, I struggle with taking even just a couple of vitamins daily as an adult! This kid has to spend at least an extra half hour every morning before school to do these treatments just to stay healthy and breathe. But this is where Sal is different from me. This isn’t just all he knows life to be, he embraces it. He knows it’s important. This is where Sal teaches me to embrace my life too and roll with the punches. This is where he has helped me believe in dancing in the rain instead of waiting for the storm to pass. I like to think, no, I know he is the reason I am the person I am today. I don’t think many people would ever say that a 13 year old boy is their hero or is their inspiration, but he’s mine. A couple of years ago I went to the National Volunteer Conference for the Cystic Fibrosis Foundation, and we met a father of a boy with CF who also decided they weren’t going to just sit by and watch their kid get sick and die, he was going to do something about it! Great guy, super blunt too. He asked who we were and then looked at me and said, well why the hell are you here? You don’t have a kid with CF, it’s just your nephew. He was being sarcastic but the only thing I could think was, I’d give my life for this kid to live, so duh, of course I’m here. I don’t see an option not to be here. I don’t understand why you wouldn’t fight right along with your family and with a kid like Sal. And so I’ve fought in different ways for Sal, by volunteering right alongside family and friends at our events, creating artwork to donate at events, by spreading awareness, recruiting friends to join in on events, by attending events in Columbus where I live, by wearing an orange bracelet everyday as a reminder and by drawing a tattoo, our logo, and placing it on my wrist so I see it every day and remind myself to dance rain or shine. To do good and live my life to it’s fullest. If not for me, then for every person with CF that couldn’t or didn’t get the chance to. I’ve added so many things to my bucket list because of Sal. One was a half marathon and in 2013 I checked it off my list by running the Rock CF Foundation’s event in Michigan. Next on my list was a cycling event. I hadn’t ridden a bike in over a year. Hell, I don’t even own a bike. But a friend of mine had tried to get me to do the Cystic Fibrosis Foundation’s race for years. Well it was finally in Cbus so I couldn’t avoid it anymore. I signed up to do the 40 miler. In my mind it’s good to have goals and something to achieve, and it’s a bonus if you can push yourself. BUT, I’m a baby, I don’t like doing things that are uncomfortable. So maybe it’s weird, maybe it’s not, but doing these races is my way of toughing it out for Sal and fighting for those people who can’t do these things. I make myself uncomfortable because I’m so damn pissed that Sal has this disease. I’m mad every time I see or read someone has died from CF. So I get angry and I push myself and like to think that I’m fighting right along with them. I know it’s not the same and it’s ridiculous to think it’s making a difference, but it makes me feel better I guess and if I can raise awareness and money along the way to get closer to a cure then I’m going to keep on keepin’ on. So here’s where I introduce you to Kevin. Kevin is a friend of a friend who does the CFF Apitalis Race for a Cure in Cincinnati every year but lives in Cbus so I was asked to join his team, To Take a Deep Breath. I am so happy that I did. Kevin has cystic fibrosis, and he’s 54 years old. He’s kind of an awesome guy, and his wife, well she’s just as awesome and just about the kindest person I’ve ever met. Kevin sent me an email asking if I’d like to train with him for the race in October. Of course I would, and I did. Here is part of what he sent me: “This is my 4th year participating in the CF charity ride. A month before the ride in 2012, I was released from the hospital with a PICC line, so, I was not able to ride. However, my brother rode the 47 mile route for me. Like Sal, I have CF and am a ripe old age of 54. I have been exercising and proving the doctors wrong for the past 30+ years. At 40, I participated in my first triathlon at Caesar Creek state park. I loved it so much, I did 9 of them the following year and am up to 20 something as of 2010. The last 3 years have taken it's toll on me, with 8 hospitalization in 3 years. After my last incarceration, I decided to go on disability and have not seen the inside of a hospital or a PICC line since fall of 2012. My lung functions have increased and overall health improved. Tell Sal that with exercise (especially swimming) and a don't quit attitude he will have a long healthy life” I rode with them about once a week for a little over a month. They taught me biking etiquette and I learned Kevin’s story over those several weeks. Kevin didn’t find out he had CF until he was 22. And by 35 he had developed a bad pneumonia that wasn’t getting treated properly and eventually had to have part of his lung removed. Prior to this his lung function remained usually in the 90% ranges. It dropped to somewhere in the 50% range after that. But, like Sal, Kevin is a fighter. As you can see in his email, he has that don’t quit attitude like Sal. Over the weeks of riding I started to see that he was a lot like Sal. And it gave me even more hope that Sal will live to be an old man. He is so active and athletic (little dude boasts a 550 batting average, had two hidden ball tricks and 8 home runs this past baseball season and just a couple of weeks ago had 3 touchdowns as running back for his football team!) that it’s going to help him out in the long run just like it has helped Kevin prove his doctors wrong. To quote from before when Jenny told Sal he now had to deal with having cystic fibrosis related diabetes, “When we told Sal there was no tears, no why me’s. Sal leaned back in his chair, scratched the top of head, looked up at Rick and I and said, “I got this, just tell me what I have to do”.” Those 11 words Sal said are so powerful and awesome. How could he not be everyone’s hero? Along one of our longer rides (34 mile training ride) Kevin and I were able to chat a bit more. This was the toughest ride I had had yet as it was in the 80s with high humidity and let’s just say I was really struggling. Let me say that I don’t find it fair for me to complain about it being tough when Kevin’s working with less than half my lung capacity. But Kevin doesn’t make you feel like a jerk for struggling. He and his wife are very supportive and helpful! This particular ride was very hilly and challenging. Kevin said to me “I hate these hills, but they are a reason why I’m here today”. This struck something in me and he’s definitely right. Challenging yourself and pushing yourself helps you stay mentally and physically strong, especially for a person with a chronic disease. It was pretty inspiring to hear him say that but like Sal, he doesn’t let CF run his life or get him down. He embraces it too. About a little more than halfway through our ride we stopped and Kevin and Becky prepared me for what was ahead. Becky explained that we would be going about a mile and into a park area that she loved because it reminded her of the Smoky Mountains. But then we would get to a hill and Kevin interjected to let me know that it was about an 8% grade hill. She told me there was absolutely no shame in getting off my bike and walking it to the top. At this point I feel like I’m going to pass out but I’m trying to be up for the test. And then Kevin said, “but your challenge is to make it all the way to the top”. Well shoot, now I can’t get off the bike, I have to go all the way to the top. So we ride in and it is very pretty in this park and it gets you excited for the hill. Becky zooms up the hill, clearly better prepared and in better shape than me! I threw my bike into first and peddled up the toughest hill I’ve ever had to climb. It was hard, my legs were in serious pain and I thought I might cry. But I looked behind and Kevin was right there with me so I endured through and made it all the way to the top, no giving up. Just like Kevin, just like Sal would have done too. So here’s the deal, race day was miserable, it was with a wind chill in the 30’s, the winds were 18-19 miles an hour and it rained intermittently and at one point we were pelted in the face by a brief hail storm. It kicked all our asses. And we were all better for it. We worked as a team and I was lucky to have two beautiful souls, my friends, Patti & Melinda who joined me in the race because they are crazy. And because they care about fighting CF too. We helped each other make it through and were motivated along the way by volunteers and friends who came out to cheer us on. It was a great day ended in celebration with friends afterwards. I’m so glad I kicked my own butt Saturday, because I got to meet a really great group of people, and another inspiring person with CF that gives me hope for Sal. So those quotes Kevin said, I mentioned they struck something in me. They really reminded me of Sal. So I did some checking a few weeks ago and I found this quote Sal had posted on his Instagram earlier this year. It was a quote from Martin Luther King Jr. and it said, “If you can’t fly, then run, if you can’t run, then walk, if you can’t walk, then crawl, but whatever you do, you have to keep moving forward”. Needless to say this was what I read before my race on Saturday and it’s what motivated me to keep going! I hope that Sal and Kevin inspire you as they do me, and that you challenge yourself to do something bigger than you! And please, keep fighting with Sal’s Pals to find a cure. <3 Live, Love, Breathe Maria Jiannuzzi

Friday, September 5, 2014

Uncool, know nothing and old!

Well Rick and I are officially uncool; know nothing and aged at 37 and 38 years old! Yep, that’s right Sal is a teenager! This month Sal turned thirteen. At five foot six and one-hundred twenty-two pounds you would never know Sal has cystic fibrosis. Every six weeks when Sal has his CF appointment his favorite part of his visit is the weigh in. I, on the other hand would rather do a dance over hot coals before I would step on a scale even in front of a clinician! I guess maybe that’s why I’m old, as Sal would put it. One thing I’m slowly learning is that Sal is growing up. I remember once when Sal was 4 years old. I had worked night shift and was beyond exhausted. There Sal sat at the table for breakfast with all of his pills organized out in front of him as he patiently waited for his breakfast. Giana, in her highchair could not wait so patiently. As I sat there trying to feed her cereal and make Sal’s eggs. Giana made a face she had never made before. Usually I could not shovel her breakfast in fast enough but not this time. With each bite she acted as if she had no idea how to eat from a spoon. I started to get a little frustrated with her until Sal so matter of factly pointed out, “Momma does Giana take pills like me now? …And Momma your burning my eggs.” Sure enough, with each bite I was trying to sprinkle Giana’s cereal with pancreatic enzymes. No worries, I am pretty sure she spit them all back out at me. At this point I realized I was not Super Mom and I needed a little help. So Grandma Ginny to the rescue! From then on, my wonderful mother- in- law was always there when I got off of work so I could sleep. I have always told my husband and my children that if anything would ever happen to me I don’t want them to be naked and starving in the corner! So they need to be able to pick up after themselves do the laundry and cook something if need be. For Sal it has always been a little different because he has added responsibility with his medications and aerosol treatments. With each meal I ask him, “Sal did you”…and before I can even finish the sentence he replies, “Yes Mom, I already took my pills”. Force of habit I guess on my part but I can see he wants to be so grown up. Just like he views Rick and I as old, I can’t help but remember him sitting at that kitchen table with his pills all laid out. Rick and I have tried so hard to make sure he is independent now we just need to trust that he will do the right thing. Tonight I picked Sal up from a junior high dance. As soon as he got in the car I asked him how it went. Then very slightly I asked, “So did you slow dance with any girls?” Quickly Sal responded, “Heck NO! Sister Cloreen was there with her flashlight and if anyone was dancing to close she told them to leave room for Jesus!” I cracked up laughing all the way home! I think on Monday I will call the school and thank her for the gentle reminder! After all...isn’t that what old people do!

Friday, March 14, 2014

I Got This...

Just when I think I have CF all figured out I am humbly reminded about the complexity and destructiveness of the disease. When the dietician called me from Sal’s doctor’s office I figured she was calling to discuss Sal’s weight gain/loss fluctuations. I was all prepared to recite his weights as well as all of the ways I was trying to get extra calories into Sal. With CF weight gain is essential to their health. Because Sal is unable to digest his food properly, even despite taking all of his enzyme pills when he eats, persons with CF are on a high calorie, high fat diet. Over the last year we have had some big swings in Sal’s weight. With all of the sports he plays we were attributing his weight fluctuations to his activity levels. Very quickly, I realized the dietician and I were not on the same page. Sal is tested yearly for diabetes. About 10% of kids with CF are diagnosed with cystic fibrosis related diabetes. By age thirty 90% of person with CF develop CF related diabetes. And then she said it…
based on Sal’s symptoms we think he may have cystic fibrosis related diabetes
. One of the few times in my life I was speechless. My lack of words quickly turned to uncontrollable tears. After I hung up the call I found myself two hours from home and on the bathroom floor of public restroom and I couldn’t stop crying. My head was flooded with all of the diabetic patients I had taken care of. Then I started to remember some of the frequent flyer teenagers I had taken care of, several whom had passed away. Then my heart quickly went to my friend Jean who had lost her son to Type I diabetes. How on earth was I going to tell my son that because he has one chronic disease he now has another? How can we fit anything else in? And how will Sal react? As my head raced with uncertainty, I decided I needed to pick myself up off bathroom floor and make my drive home. When I finally reached Rick on the phone I could hardly even recite the conversation I had with the dietician. I tried to explain diabetes in a 2 minute nutshell as well as what our new rituals might look like. Rick obviously heard the desperation in my voice and simply said,
Jenny we will figure this out, we need to get our game plan down and just do it!
I felt like I was one of the kids on his basketball team he was trying to pump up. For a brief second I choked back the tears and just smiled and I realized what he said, as simple as it may have been, he was right. We agreed to get a game plan together before we told Sal. For the next couple of days my kids thought I had pink eye. LOL I was still struggling to get it together. After a lot of praying and a lot of encouragement from family and friends I finally felt I could talk to Sal about our newest hurdle without any tears. When we told Sal there was no tears, no why me’s. Sal leaned back in his chair, scratched the top of head, looked up at Rick and I and said,
I got this, just tell me what I have to do
. Then preceded to ask us if he will be like Mall Cop as he continues to imitate the scene from the movie when Kevin James is hypoglycemic and eats a dirty sucker out of the garbage and then miraculously ninja kicks up to get the bad guys. I learned a lot through this experience. First of all, Sal is way stronger than I am and his perseverance and attitude are resilient. I also learned you do not know what the future holds. To try and speculate on what may or may not happen will drive you crazy. Live in the present and enjoy the moment! Preferable not two hours away on a public restroom floor…but you know what I mean! As for now Sal will have to take his blood sugar and add insulin to his daily regime. The fight continues and now you know just one of The Million Reasons to Give to fund vital CF research! Our Annual event is less than one month away please join us on April 12th! See tour website for ticket info. Jenny