One Mother's Story

Introduction of Self and Family

Want a great bio?! I know, who ever can write their own bio and still feel good about yourself after deserves a metal. I wrote my bio. I read the 3 sentences, then messaged one of my older brother's who is away to the islands for med school, and said simply. “I suck.” He said send me what you have. So I typed the 3 sentences, and he said, “Give me 2 minutes!” And then he sends me this bio that made me just cry. Then, he messages, you are way more than any bio, Paisley. That is where I am, as a parent of a child with Severe Hemophilia. I have become accustomed to this lifestyle. Arguable numb at times (which is a front by the way). It never goes away, it's always there. I don't ever wish he didn't have it. Because I feel defeated by it if I dare speak those words. I don't ever want him to feel defeated, much less by something that makes up apart of who he is. Don't get me wrong, he is also more than a bio, he is more than Hemophilia. He is my son. And he is not defined by his bleeding disorder. He is intelligent, he is an artist, he is a “master builder”, he is silly and serious, he wants to join the service someday. He is My Hero.

Justin's Diagnosis

Justin had a normal pregnancy. He was born at 40+ weeks. His due date was 06/06/06. He waited a week and came on the 13th. So now someday will be celebrating a Friday the 13th birthday! Anyway, he came and we were just beyond excited! Everything was going swimmingly, until I got up to use the restroom. I saw blood on my chest, and quickly realized it was coming from Justin. And that is where our hemophilia story begins. Justin's PKU heal stick was bleeding. The nurses there said I was opening it every time I fed him and told me to be careful how I was holding him. I felt horrible. I can't even hold a baby right?! So they sent us home, telling me not to worry about it but continue to change his band-aids. So there I am not trying to be a over sensitive, naive, first time mother. He continued to bleed. We continued to change the band-aids. The next morning I wake up and panic. He never woke in the night for me to feed him! He was awake but lethargic. I was so scared. Opened his swaddled blanket and there was a lot of blood. I did as the staff from the hospital said, I didn't go to the ER. I went to our assigned eds. I walked right in without a call or appointment. I opened the blanket & the doctor only spoke Spanish! What are the chances right? She started telling me with urgency to go. I could only make out building with many colors. Needs blood. I wrapped him back up and my sister was driving. I didn't put him back in his car seat, I held him. Tighter than I have held anyone.  I had no idea what building we were looking for. But we got on the 51 and drove. Then, there it WAS, THE BUILDING OF MANY COLORS. PCH (Phoenix Children's Hospital)! They rushed us back and did an iv in his head. And this is when I first let out a giggle through my tears. His party hat. I can so vividly remember that hat. They gave him this medicine, and he stopped bleeding. I said, “I want that. I need to know what that is.” The nurse smiled and looked up at me and said, “Oh honey, you're going to get a lot more of this.” Boy was she right!  .........

After all that, we started our adventure that is hemophilia. We are forever grateful for our extended family, our first line of defense, our Team of supporters at the hemophilia Clinic. Some of the scariest words I can remember from one of our first appointments was, “You are going to be his biggest advocate. You will be informing doctors/nurses of hemophilia. At times you may know even more than they do.” What the heck? So empowering, yet at the same time, terrifying. Terrified. What a responsibility to take on, a child with a chronic illness/ disorder. Who am I to handle any of this? I suck. And that's where our extended family comes into play. I have my immediate family. I have Chris' immediate family. We are lucky they are as supportive as they can be. But our clinic family is unbelievable. I realized, very soon after and continually throughout the past 10 years that they have my back. Then, we were embraced by the AHA! Another amazing extended family. And they have been there every step of the way.


I think that's what I appreciate so much about hemophilia & the community it has built. It is undeniably unpredictable. Yet, it remains to be under control, and that's where I feel lucky that he has severe. We are proactively treating him. What a wonderful thing. To also know that I can at anytime get a question answered, a fear calmed, and the support to serve my sons needs. Knowing this helps empower me as Justin's in home care-taker/advocate. That is not always the case in other areas of chronic illness.  Most of my “friends” are now other mother's with children with chronic illness, medically complex kiddos, or still to be determined cases. And believe me when I say that the support my family and son have received has been unparalleled. A lot of these mothers don't have support from their families, or even at times, spouses. So being able to go to the clinic and feel understood helps me to be able to learn, focus, and listen to and head the guidance of  what  the pros can teach me.

Justin's Port Placement

Fast forward a year! It's another transitional time! Port placement. You know they prepare you as much as they can before. Which is all truly awesome but when your first attempt at sticking the fake baby with a needle, you break the needle. It can play some pretty messed up mind tricks. ... Scary handing your child over to have a necessary procedure done. And once he comes out, there is no turning back. Crash course of everything you have studied for is all coming down on you. All the little steps, mixing, washing, and bracing yourself for the real deal. That's where the little nasty affair happens. PIC Line. I was forewarned. Not to fall in love. Oh but I did. I fell hard.  And needless to say, I then grew into the port after about 9 years.... It took My husband and I and our 2 older girls to give his medicine. Chris holding, the girls, blowing bubbles and trying to comfort him. I infused. Then, it all starts becoming life as you know it.  A few years pass, and we are pregnant with our second son. All the preparations of having a child, maybe a boy, with that chance of hemophilia. Then, that's when we learned he was no longer coming as planned. Robert, had Trisomy 13. We delivered him still. Pure heartbreak, and we embraced it for what it was. That is something that having a child with chronic illness kind of prepares you for. Nothing is ever, as planned. Never again really. We slowly started to gather the pieces and get back on the roller coaster of everyday life.

Justin's School Beginnings

Justin didn't do preschool so kinder was our first attempt at breaking out into the big world of normalizing him. It can be a little scary and overwhelming sending your little one to school. But then, you start thinking of how do I explain this in a not so overwhelming way to the teacher and school nurse. Before I could even get nervous about it, we were contacted by the social worker that has helped us each year up until this past year with introductions. What a relief! She had everything printed up and was there to really truly educate the staff. And show support to them for me. Lighten the load. After each year I was able to be more and more comfortable and use her as a model to what I would do the following year. This past year I went it solo. I felt comfortable doing so because not only had I sat in on a couple but because she was only a phone call or text away to help. Once again, having that support to fall back on is so important in all transitions of hemophilia. I was never made to feel as though I should know this by now, or when are you going to start taking this on like a big girl. It was always, are you sure, we don't mind, it's what we're here for!

While Justin was in kindergarten, we were happy to be able to welcome Cruze to the family. Cruze didn't have a smooth as entry to life. The entire pregnancy was nothing but stress.  They saw red flags all over. Heart, GI, kidney's, bladder, 2 vessel umbilical chord with a cyst. And really low fluid throughout. And just other things, it was easily every week I went in, there was something new. We were prepared to not be bringing another son home. But we didn't give up. After much discussion “Suggestion” of terminating him from the doctors, we didn't. The fluid that was surrounding his organs including his heart was of concern. But even more so is if Cruze were to be born with hemophilia. Once again, the support our family received from the clinic was amazing. They helped me advocate for Cruze's life and with his best in mind. Thanks to them I would be delivering at a hospital more fitted for our families needs. And it paid off greatly. Cruze was tested immediately and did not have hemophilia. But his slew of other medical issues that came to surface in time were relevant. I didn't have to be separated from him the way we would have been otherwise. Cruze is in stage 3 kidney failure, and progressing. His GI issues are still under surveillance. He actually goes in for his EKG tomorrow and shortly after an ECHO because his kidney disease has now caused high blood pressure which we have started treating. In his short life he has had multiple procedures, fixing his kidney reflux being one. One procedure where he actually stopped breathing under anesthesia, that's pretty scary. He has had all sorts of therapies and still continues therapies to help him today in his developmental preschool. He is vibrant and looks up to Justin in every way. As we are still figuring Cruze out, we are just trying to do whatever we can to help him become self sufficient. I feel truly blessed with all the things that were seen in his ultrasounds. It made it so much easier, rather than trying to convince doctors of what was happening, that we were being pointed in the next direction.

Our youngest daughter, Cali, who is now 2. She was watched closely during pregnancy, just because of history. But she came right on time. Without a hitch. I was able to be at home at 24 hours. She had some food protein allergies, similar to Cruze, but no where as severe. And seems to be developing right on track. She is the only one in the house not taking medicine. I think she feels left out at times.  That's the thing with chronic illness, and the awesomeness of the Hemophilia association and hopekids. She is included in those activities. I think we have always tried, along with the older girls who are now 20 & 17, to not let their brothers' medical stuff drown out their spark as well.

Port Removal

February of last year Justin's port has had it. He had a good run I feel. 8 years! It was time for the big jump. Probably one of the scariest things. That means I was once again in the hot seat to learn something so out of my natural range of being Mom. Time to start finding those veins. And once again our support system was there every step of the way. There were many times I felt like I can't do this. But with the much needed encouragement at the clinic and support through many mini meltdowns from failing to hit a vein the first, second, or third time, we were on the learning curve. They all had so much patience with me. At a point we actually had some help from the therapist there in clinic to help Justin when he was having trouble hitting. Not to mention, Justin was my biggest cheerleader.  I can't count the times Justin would positively encourage me, probably also secretly trying to convince himself at the same time that is was all going to be ok.

Justin’s Camp HONOR

I wasn't in the hot seat for long though. A few short months later Justin was going to be attending his first year at Camp HONOR! Camp Honor is by far one of the greatest upsides to having hemophilia. I know this, because when I asked Justin his favorite part about having Hemophilia this was one of his top 3. Not only is independence bread there, but the normalizing of his life, is at that camp. At camp he learned to administer his own medicine. At the same time, building bonds with his peers. Surrounded in an environment of kids of all ages that face similar obstacles.  What a life changing experience. As I was waiting at the end of the week with no expectations. Just hoping he had a good time and felt independent while away. Realize that was the very first time he had been away from me his whole life for more than a night. When the buses come to a stop the parents are anxiously waiting outside the doors to greet their children. I was one of them. He got off the bus and held up his stick! I knew right then that he had braved the first self poke that week. The pride on his face, filled my heart with gratitude. Something I could not give to him was absolutely provided to him. I then waited to get to the truck to cry tears of gratefulness and happiness, mixed with a little sad that this is his life. He has continued to give his own medicine, for the most part, regularly. He has hard days, when he cries, or he misses and feels the failure and I try and pick up those pieces by helping him. But he was encouraged to take the leap.  And it has been a successful transition so far.

Our family was introduced to the AHA right away. Our family is not anyone who would search out a support group. They reached out to us. I am so thankful they did. Our medical staff is like I said our first line of defense. But the Association is what brings out the positive. Providing the extra support and family opportunities to educate ourselves in the confusing world that is medical. Hemophilia is truly a family ordeal. One is affected, all of us are. The association gets that. The hemophilia community is so important. The relationship we build with  the association staff, our nurses, and drs, and in Justin's case his study nurses is huge. It encourages us to advocate on a bigger level, help bring awareness, it also validates what we know as parents already. Our children & their condition matter. The efforts to make his life easier on all levels does not go unnoticed. Every time we have gone in for a visit in clinic and association, is always educating and uplifting.

HopeKidsAZ

Something about having children with chronic illness and other complex things is attending family functions. Simply going to the movies, going to the grocery store, being a regular at the hospitals is exhausting. It's emotionally and physically draining. Even mentally preparing the night before, not sleeping before or after tests have been done. Waiting for results. It takes a toll. It is hard to not be overcome with emotions at appointments at times. You have to keep it together. That's where survival as a parent or caretaker comes in. Wanting to have a busy schedule of simply sports, karate, music or dance lessons be what is occupying your down time. Not medical hardships. So when a friend of mine that I had met, her child was chronically ill. She mentioned to us that maybe HopeKids would be something we might be interested in. (Hopekids is for children and families that have a chronic illness.) We thought, oh well it's worth a shot right. So after my friend nagging me over and over to send in our application, we were accepted into the HopeKids club. When we as a family can attend an event and not be worried if it is something our kids can attend and participate in, it's so much more relaxed. It's very similar to attending an AHA event. There isn't going to be something there my son won't able to do. It's a hemophilia friendly environment.

Boot Camp

Which leads to my next example of the greatness that is made available to Justin and others.  Justin and I were given an opportunity to attend a “Boot Camp”. This “camp” was held once a week for a couple of weeks. It was after hours in clinic. The boys that all went to camp together were able to revisit that in a more intimate way. While at the same time the parents were given support and information separately on different topics each week. One night I couldn't help but feel something so awesome. Justin had gotten in the truck and as usual we went over what we learned that night.

He said: "Mom, a boy was crying tonight.”

I  didn't know where he was going to go with this so I waited.

“He cried, Mom. He cried just like me. And when he started to cry another boy told him 'it's OK, because I cry at home too.”

Right at that moment it was just what Justin needed. His heart was softened for that boy. He completely understood him. As well as being completely understood himself. At the completion of the Boot Camp they received patches and a banner to showcase their accomplishments on. He proudly has this hung in his room and displays his stick from Camp in the guest bathroom for all guests to see.

These are the experiences that are necessary in order for him to grow. In order for him to be a little braver next time & even try a new vein. In order for him to be independent, he has to be given these opportunities to test his limits, but feel safe enough that he knows his team is there for him to catch him or cheer him on! I know Justin is young, and we haven't been through all the transitions that are yet to come, whatever they may be. I can with confidence know it will be OK. The biggest is behind us, and him independently administering his own medicine & his knowledge of hemophilia, in my eyes as his mother, is the most important. And anything that is waiting in his future in regards to hemophilia, it will be OK. In the past 10 years treatments have come so far. To imagine what he will be apart of in his lifetime is exciting.  With the support team that he has grown to know and that we all love is a very big part of that. Now that we are expecting our last child, who is a boy. It's comforting to know, if he is born with Hemophilia, that we have this community already as a foundation. And at the moment he is born, our hemophilia team is going to be right by our side.

Josh Traulsen, our new program director

Josh was born and raised in Phoenix, Arizona and has worked for non profits most of his life.  As a child Josh’s parents, Jennifer and Richard Traulsen were very active in the camping community and spent years working at Camp Honor each summer, bringing Josh along to learn the ropes. Beginning in 2003, Josh spent 3 weeks each summer working with Camp Swift, a program dedicated to bringing underprivileged youth to camp, as a counselor and eventually unit head. 

 Josh graduated Arizona State University with a degree in Non Profit Management and Leadership and a Certificate in Special Events Management and Urban Planning.  While at ASU, Josh volunteered as the Volunteer Coordinator for the My Nana’s Best Tasting Salsa Challenge. 

For the past year Josh was with the East Valley Jewish Community Center as their Director of Children Youth and Camping but is happy to be a part of the AHA Team as the new Program Director! In his free time, Josh likes to rock climb, hike, bike, play guitar, and cook.  He is a certified lifeguard and canoeing, archery, and climbing instructor and is hoping to bring some of his skills to new camp programs.  He is looking forward to meeting all the members of our community as he plans events for all of our social programs and prepares for Camp Honor.

Welcome Our New Administrative Assistant

Cindya J Tona Morrison

Cindya (CJ) was born and raised in Sonora, Mexico.  She finished her education  in Sonora,
and worked with children and teenagers as a teacher while living there. Cindya moved to Phoenix in 2009.  In 2010 she became part of a nonprofit organization as an intern. While working at this nonprofit she became even more interested in helping others.That is when she decided to focus her career search on nonprofit organizations.  During her search she foundEsperanca, a nonprofit organization where she formed part of their organization for about 2 years. Cindy was very motivated when she discovered the Arizona Hemophilia Association.  She was moved and positively impacted after learning about the services and support the AHA provides to hemophiliacs and their families in our communities. 

Cindya is married and has three children. In  her free time  she loves spending time with her family. Cindy also likes watching movies, reading, and taking road trips.  Cindy is very exited to be a part of AHA's incredibly hard working team and community.  Cindya is looking forward to meeting all the members and working together as a team!

Cindya es bilingüe y espera se sientan con libertad y confianza  de  llamar  o preguntar sobre cualquier duda, los  atenderá con gusto. Ella está feliz de formar parte de la asociación y espera pronto conocer a todos los miembros de la comunidad. Cindya está ahi para servirles y ayudar en todo lo que se necesite y también aprender cosas nuevas.

Welcome Brent, Our New Community Advocate

 

Meet Brent Davila, the newest member to join our team at the AHA. Brent Davila grew up as a camper going to Camp HONOR, and was later a counselor for several years. Brent feels lucky enough to be working to help provide other members of our community with the same wonderful opportunities that he has had. At the AHA, Brent will be focusing his energy on our outreach and advocacy programs. Brent’s goal is to facilitate opportunities that would allow members of the bleeding disorder community to advocate for themselves. Few can understand and explain the challenges that those with bleeding disorders and their families face better than the very people living with these challenges every day. This is why Brent believes the Speaker’s Bureau is such a valuable tool. It gives individuals from our community with a vested interest in the well-being of families with bleeding disorders, a chance to let their voice be heard, and a chance to have a say in the matters that are important to us all. Moving into the future, Brent believes it would benefit the community at large to have an actively involved group of individuals that are comfortable with advocating on their own behalf, and on behalf of people with bleeding disorders everywhere. Brent hopes to help make this a reality. Brent believes that our community has shown that we can accomplish incredible things when we all work together.

If you are interested in becoming a part of the Speakers Bureau, please contact Brent at the Arizona Hemophilia Association at 602-955-3947

George Coppock, Our New Team Mentor

George Dickson Coppock IV was born in Cave Creek, a small town just north of Phoenix, AZ. Most of his younger years were spent on his parents’ 7 acre farm on Cave Creek causing trouble with his 3 younger siblings. In 1986, his father opened a small family operated construction company, "Cave Creek Adobe" where George and his younger brothers would work during the amazing Arizona summers. George’s father believed in providing future generations with an affordable alternative for building an energy efficient home. George attended the local Cave Creek public schools until his 5th grade year, when his mother decided to home school the family. For the next 2 years, schooling was followed by working in the "Adobe Yard" as it was called. Upon completing his 8th grade entrance examination, George enrolled at Foothills Academy, a college prep school in the Cave Creek district. He attended Foothills Academy until his junior year when he switched to Cactus Shadows High School. Graduating in 2001, George looked forward to a career in the family business but wanted to further his education. He enrolled in PVCC a local Community College to pursue a career in engineering but soon found his passion in serving and helping others. 

In the summer of 2001, George attended Camp HONOR for the first time and it was truly a life changing experience for him. In the years to come, George would bounce around from job to job, from providing turn down service at the Four Seasons, to custom machine fabrication for off road trucks, until finding his home at the Hemophilia Association. George really looks forward to serving the Hemophilia community in the future for many years to come.

Welcome our New Development Coordinator

Nicole Wheeler

 

Nicole has worked in numerous non-profits including American Cancer Society, Lymphoma Research Foundation and the Wellness Community. Her non-profit experience focuses in donor cultivation and fundraising events such as Walks, Golf Tournaments, Galas, Fashion Shows, Car Shows, and more. A native to Arizona, Nicole has a passion for building relationships with people in our community and raising funds to support those in need. Nicole recently bought her first home! She spends a majority of her spare time remodeling it with her 9-year-old son, Dylan. Nicole and Dylan love do-it-yourself projects and a good challenge! Nicole also enjoys playing kickball in a competitive adult league, hiking and country swing dancing any chance she gets. When she’s not working or spending time on her house, she plans 10, 20 and 30 year high school reunions in the valley, which is typically quite entertaining!Nicole looks forward to utilizing her experience to help the organization grow its current events and hopefully add more that will increase our fundraising opportunities as well as continue to develop relationships within the community!

 

Joshua Schmidt - Meet Arizona's Newest Blood Brotherhood Member

 Hi, I am Joshua Schmidt. I am a Hemophiliac in Phoenix. I want to help you make your life better.

     Having Hemophilia can be many different things for many people. Some of us don’t have to worry about much because we have good coverage and bleeds are not much of an issue. While some of us are still struggling to get the needs we have met, and sometimes you just can’t do it on your own. Whatever your situation with Hemophilia is, there is a great way to to build the quality of your own life and that is Blood Brotherhood!

    When I moved to Arizona in 2010, I was in bad shape. My ankles were about to fuse themselves together before the doctor could. My wrists and forearms still need attention that I can’t give them until I get my legs are taken care of. Life was hard and the last thing I wanted was to deal with was more Hemophilia, or anything related to it. I did not want to think about doctor visits, shots, or stretching. I was also very alone. I had my wonderful family to help get me through it all, but they still don’t understand what I really go through. Nobody does but us. Sometimes we want to be left alone because we don’t want others to see us when we are down, yet we want somebody to help us through the pain we are experiencing.

    Last spring was an eye opening experience for me. I was going out of town and needed some shots. I called to place my order and was told I could not because some laws were changing. I went to instant panic mode. The reason I was in such horrible shape when I came to Arizona was because I had no access to shots before I moved here. For 6 years if I had a bleed, I just bled for days or weeks. I still had to work as many of you do, so there was no resting. Being instantly reminded of that time in my life after that phone call, I realized it was my own fault I could not get shots. I had done nothing to stay in touch with my Doctors and nothing to stay informed about Hemophilia related issues. Laws regarding health care get passed every month and I had never even shown the slightest interest, even though many of them directly affect Hemophilia and those with it. I just sat around while my fate was up to everybody but me. I thought “Self, do you really want to ask a Lawmaker or an Insurance CEO if you can have your shots?” That was the first and last time I had a thought like that.

    I set up a meeting with the fine folks at The Arizona Hemophilia Association. Luckily (for all of us) they were already 2 steps ahead of me. Most of the contents of that meeting I will save for another rant. The reason I am writing is because at that meeting Jessica and Cindy encouraged me to join Blood Brothers. I did and I am glad I did! As I said before, I am not excited about Hemophilia, there just does not seem to be a ton of good that can come from it. I was wrong!

    One of the most liberating days of my life was when I showed up to my first Annual Meeting. I looked around and saw guys limping around like I do! I saw people with ACE wraps on! It was not exciting to see all of these people who are hurt, it was comforting to know that I was no longer alone. The things that my family can’t relate to, these people could. I just have to say “Hip Bleed” and you can instantly recall the pain of your last hip bleed, what it stopped you from doing, and how long it kept you down. You and I could be the most different people, but we both know how it feels to have a bleed. We both know how it feels to have to want to do an activity so badly, but know we can’t or we’ll get hurt. That is hard to deal with but at the end of the day having somebody who knows what that is like means more than I can put words to.
 
    I just can’t emphasize enough the weight Blood Brothers as well as The Arizona Hemophilia Association has lifted from me. And it can you too. Getting to know these amazing and funny characters that call themselves The Blood Brothers has been an experience that I missed out on my whole life and never knew it. Hemophilia is obviously not normal, but when you are around the Blood Brothers, you are normal. Whether you are having a bleed at the time or have not had a bleed in years, we are still the same and we all need somebody who knows. Now I can’t wait for Blood Brothers Events! I have made so many great friends there. We get to do things that even the “Normal” people don’t get to do normally. More than that is the companionship that comes from interacting with another human who has to spend this life in a boat that looks very similar to the one you sail around in. The Hemo-Boat. 

    In closing, I would just like to ask you to come and meet me. Come and meet my friends who have Hemophilia. Come and do something that will mean more to you than you could ever imagine. Come and get to know this great bunch of guys at The Blood Brothers! We are there for you!

Joshua Schmidt

Amanda's Internship Experience

Throughout this semester, my last semester before earning a bachelor’s degree, I had the incredible opportunity to work as an intern for the Arizona Hemophilia Association. I first began working here in the summer as a Bayer Hemophilia Leadership Development Program intern. When school started and my time with Bayer ended, I got the chance to continue my work and receive college credit as well. This internship has been much different because I moved back to Tucson for school and worked primarily from home. If you have ever worked from home, you know how challenging it can be to stay focused! However, by keeping contact with everyone at the AHA office and traveling to Phoenix for various events, I was able to work on numerous projects to keep busy.

This little guy was at my desk every day to help me stay focused!

Some of my biggest accomplishments this semester have been successfully organizing a camp program, creating a blog, and putting on two events here in Tucson. At Camp HUG, I was in charge of the family challenge on the last day and it was very fun! I had been planning it out for a few weeks prior to camp and was nervous about getting it to run smoothly, but all of the camp staff helped me out. It turned out to be a lot of fun; we even made a “haunted cave” for the families to go through at the end.

Another project I worked on was the Arizona Hemophilia Association blog. If you have not seen it, you can check it out at hemophiliaz.blogspot.org. I learned about how to design a blog and maintain the content on it. It can be difficult to find stories to write about or pictures to make it interesting. I hope we can continue it update it with community stories in the future.

In addition to these projects, I also worked on outreach in Tucson by organizing two local events. One of them was a women’s craft party. Although it was exciting for me to plan, not a lot of people showed up in the end. Fortunately, we were still able to have fun and made some cool Halloween crafts. I learned that sometimes things don’t happen exactly how you plan them, but you can still make the best of any situation.
You can see our crafts here.

I am happy to say that the second Tucson event had more people. Funnily enough, it was also easier to plan! We got some families together at Agua Linda Farm’s Fall Festival and had a fun evening of corn mazes, petting zoos, and Charlie Brown on the farm. It was a great feeling to see families having fun at an event I had put together.

Overall, my experience working with the AHA has been phenomenal. I am happy to have gotten to know so many people in the office and our community. I know I will use the skills I have gained in future jobs and hope I can spread the spirit of this community to others as well.

My awesome supervisor and mentor, Jessica

High-Ropes, Elephants, and Golden Eggs

A Camp HUG reflection by community blogger, Diane Lee

What, might you ask, do high-ropes, elephants, and golden eggs have in common?  Well, if you were lucky enough to attend this year’s Camp HUG you would understand.  Camp HUG (Hemophilia Uniting Generations) is a family camp weekend offered to the bleeding disorder community through the Arizona Hemophilia Association and the Cascade Foundation.  It is a chance for families in this special community to come together and participate in family oriented activities designed to improve the quality of time families are able to spend with each other as well as with other families.  The camp is a great compliment to the many activities offered for the different groups within our community.

Our family had not attended Camp HUG in previous years even though my children had attended the kid’s camp for many years.  Each year we made the excuse that we had to work and was unable to get away or we had so many other activities going on and this was not feasible at the time.  I figured my kids had enjoyed camp in the summer and wouldn’t feel they missed out.  My husband and I felt “too old” to go to camp.  Boy! Were we wrong!

Having more flexibility with my time this year, I decided to get more involved with the activities sponsored by the Association.  We had always attended the Annual Meeting and I had previously attended Washington Days, but this year I committed to being more involved with BleedHers and my son joined the EPIC group for teens.  When attending the Women’s Retreat, many of the ladies convinced me that Camp HUG was an event not to be missed.  They were correct!  Thank you, ladies!

After checking in and making our family crest, Pat Torrey facilitated a great session with the teens and parents.  He demonstrated how we make logical decisions and emotional decisions.  He used an elephant to represent our emotional control and the rider to represent our logical drives.  He gave us pointers on how to control our path and how to embrace both our rider and elephant. He was a dynamic leader and inspiring teacher.

Pat’s lessons on how to control the rider and elephant were put to the test the very next day.  My elephant was ready to bolt for the woods at the thought of walking the high-ropes and taking the zip-line.  However, I took his advice and decided to make my path smaller.  I managed to muster the guts to shimmy up the thirty-six foot pole and planted myself on the platform poised to “zip” to my certain demise.  Before the climb I had watched my agile teen son scale the pole and fling himself across the swing bridge and slide silently down to the base of the zip-line.  He was confident, skilled, and fearless.  My daughter then bounded up the pole and slowly carefully walked her way across the thin rope and she also slid gracefully down the wire.  My youngest son, being his first time, fearlessly took his first few steps up the pole.  Once he was a good, maybe, five feet off the ground his elephant took over and was wanting to run for the hills.  He started shaking and asking to come down.  My first instinct as a Mom was to grab him off the pole and hug him.  I listened to my rider and knew he was safely harnessed to an experienced instructor and all would be fine.  We encouraged him to take a few more strides up.  He was able to make it about half way up the pole before coming down.  As a family we were there to offer encouragement and consolation and confirmation.  Having witnessed this small triumph with my son, I was more resolute to experience my own triumph.  When it was my turn, I managed to get a few feet off the ground before my elephant, too, wanted to run.  Hearing my family and friends assure me and encourage me to continue is the only thing that got me to the top of the pole.  From below, the pole looked tall, but from atop, it was freakishly high.  Hearing my son count down and offer the same words of encouragement he had just heard, gave me the strength to carry out my mission.  Down I slid, not as quietly as Anthony nor as gracefully as Amanda but to the bottom just the same.  My elephant and rider were in harmony, if only for a moment.  It was joyous!

After our day full of ropes, zips, crafts, and games, we thought we were done for the weekend.  However, there was Sunday, a day of competition and tournament play.  Keeping with the Indiana Jones theme, families competed in different games seeking clues and artifacts to fulfill Professor Jones’ challenges.  We hunted for hidden golden eggs and lassoed innocent chairs.  We slathered whipped cream on our heads and fired deadly marshmallows at each other.  We wrapped mummies and sought out our missing family crests.  It was great to see families working together to achieve goals and compete together.  Through this weekend, we could witness unity across generations.  Camp HUG was a success from high-ropes to elephants and to golden eggs.  HUG mission accomplished.

-Diane

Send your camp stories to amanda@hemophiliaz.org!

I'm Just As Normal As You

A reflection piece written by Jeff Johnson that we wanted to share:

I'd like to approach a subject here that's been present in our community for quite some time and unfortunately isn't always dealt with as openly and honestly as it could be. I'll warn everyone now that this is challenging, both of and for, parents. Not in a negative way but in a healthy, self examining way. Still, one should probably not proceed unless one is prepared for reflection, self examination and even, perhaps, the rejection of deeply held beliefs and feelings.

The subject I'd like to discuss is the attitude that having hemophilia makes one less than normal and warrants feelings of guilt or regret in a parent or should be viewed as "bad news" and cause for mourning or distress. Now, I'm pragmatic enough to admit that yes, hemophilia is a whole different level of lame and I'm not demeaning my own condition. Bleeds suck, especially when they prevent an activity or life choice from playing out as we would have preferred. And it is expensive, of course, and time consuming. Yes, it has numerous challenges. But at the same time it is important to maintain perspective. There are countless conditions worse than hemophilia and in the grand scheme of things being born a hemo is far better than being born with MS or cancer or sickle cell anemia or so on. While a challenge, hemophilia isn't any longer a death sentence or even condemnation to a life that is less than normal. Our factor today is amazing, as is our care. Compared to previous generations and the trials they experienced, today hemophilia is barely even a disorder, which is why I often joke that "hemophilia is the new asthma!" While it may seem, to a clotter, that we hemos are afflicted with this terrible curse and will never experience the life which others would have wished for us, the reality, despite even the fears of a mother, is that there is absolutely no reason to believe that a hemo's life, especially today, will be any less full or rich or adventurous or rewarding than the life of our fully clotting peers. This isn't romanticizing either. Hemophilia has in many ways become an affliction of the soul and mind just as much, if not more than, of the body, and it's important that we treat it in those regions as diligently and bravely as we do the body.

Which brings me to the part where I am going to challenge parents. When a parent (or grandparent, uncle, aunt, guardian, etc.) makes a statement that they feel guilty or regret that their child has hemophilia, what they are really saying is that they feel bad because their hemo is less than they could have been. Argue the point if you like, but tracing back from these statements, which I see often, that is the only logical end point. If one feels guilty for the condition of their child, then one sees reason to feel guilty, which means one sees in their child a condition in which that child is diminished or held back from being the something more they would be were that condition not present, which means that they see their child as being less than they could be. As a hemo, I must admit, that when I see someone expressing feelings of guilt because they had a hemo, or a refusal to have children because they're a carrier, or sharing the "bad news" that someone had a hemo, I feel demeaned and somewhat offended, as the greater idea those statements convey is that we hemos are less than we could be, less than our parents hoped for, less than our siblings or peers, less desirable. Less. This is simply not the case. As I discussed earlier, we hemos are equally capable today as any clotter. With modern treatment there is simply no challenge, activity or experience partaken by clotters which it would be impossible for a hemo to participate in. We are active, we are strong and yes, we even play football and hockey now. Yes, that really happens. But to get back to my main point, it is more attitude that restrains us today than hemophilia. We face far more challenges in overcoming the perception that hemophiliacs are fragile creatures at risk of greater harm than our clotting peers than we do of actually being held back by our condition itself, and this perception finds its home in the fears and guilt of parents and guardians.

I will break here and state that yes, being a parent is incredibly difficult and the fears that a parent faces are sometimes insurmountable. We all know this, whether we are parents ourselves or not. At no point do I intend to convey that parents don't have a tough, demanding job and in no way am I demeaning a parent's emotions, fears or feelings. They are all reasonable and understandable. What I am hoping for, however, is to challenge some parents to engage in genuine self examination and to really confront how their emotions, fears and feelings affect the hemos they are experiencing those feelings for. To delve into themselves and ask themselves questions which many parents eschew, such as "Are these feelings beneficial? Is the way I feel good for my child? Even though I feel this deeply, is it really best for my child or is it creating an attitude that is detrimental to my child?" These are difficult questions, yes, but they are good ones to challenge one's self with. Quite often in my experience in the hemophilia world I have been confronted with parents who don't take this step and instead express their fear/guilt/regret/what-have-you and then stop there and wrap themselves in the mantle of parenthood, stating that "As a parent I am allowed to feel however I want!" Well, yes, we all are. And that's the catch. As a parent one is absolutely entitled to feel however one does, but parents are not released from the consequences of their feelings and the affects which they have on others, just as a pebble cannot be expected to be dropped into a pond without causing ripples to emanate and flow away from it. One's feelings of guilt for having a hemo may feel entirely legitimate to them, but in their child they may cause feelings of inadequacy. While a parent is mourning that their child has hemophilia they may be subconsciously communicating to said child that they are not as special and capable as they could have been born. The ramifications of a parent's attitude, even if not explicitly stated or expressed, are profound. I've seen, too many times, proof of this at summer camp. I've attended hemophilia camps since the mid eighties as a kid myself, and have worked as staff since the nineties. Every year, without fail, I observe at least one hemo who comes into camp meek and apprehensive. They're unsure of their potential and afraid to fully engage. As the week progresses and we work with them to instill courage and empowerment, they come alive, and by the end of camp they are running, jumping, climbing rock walls and living with the gleeful abandon that they deserve. It's glorious. But then, on the last day, they retreat back into themselves, especially when their parents show up. Now that Mom is around again it's time to go back to being a hemo, a defective kid who isn't "normal." It breaks my heart every time because it doesn't have to be. Many parents don't even realize that they are doing this, which is sad as well. They think they've contained their guilt, their fears and their regret and that their child is completely unaware, but that's merely an illusion. Their child is very much aware of how Mom and Dad feel and so, out of his love for them, he plays along. "Mom feels guilty that I have hemophilia so I'll be good and not do anything 'dangerous.'" "I don't want to make them feel worse so I won't try out for soccer." And so on and so forth. They don't live up to their potential and their parents never see what their child is really capable of. Hemophilia hasn't held them back; the attitude and perception that it is less than normal and cause for guilt has. I see it all the time.

So again, I challenge parents to really look deeply into themselves and examine their emotions and feelings. Ask yourselves if how you feel is really, legitimately warranted and if it is the best way to feel for your child. Examine why you feel a certain way and whether or not it is based on fear or reality. Reject the comforting but unhelpful sanctuary of "I'm a parent and can feel however I like" and instead proceed with the attitude of "Even how I feel inside affects him so what is the best way to look at life? And him?" Of course these kinds of exercises are difficult, but so is learning to self infuse, which your little hemo will have to do regardless. Consider this "prophy for the soul." I promise you, it's for the best, for everyone. Hemos who grow up in homes where the attitude is "You just have hemophilia, not 'made out of tissue paper syndrome' so get outside and play" flourish.

In closing I'll pose the question, "What is normal anyway?" Not having hemophilia is normal? I call shenanigans. From my perspective, it's clotters who are abnormal. They freak out at the thought of getting stuck with a needle, a bruise gives them panic attacks, they think a limp is a sign that it's time to see a doctor, they usually can't wrap an ankle to save their lives. Poor clotters... So far from normal... See what I'm getting at? There is no normal, so there is no model of normalcy to hold a child up against. We all have conditions. We are all imperfect, and in this lies our perfection. So from a totally "normal" hemo who hopes to one day live free of the perception that I am less, please challenge yourselves to no longer see us as less. See us as more. See us as normal.

Or I'll stick you.

-Jeff

Bloody Tears Bring Fears

What would you do if your son woke you in the middle of the night crying tears of blood?  In my sleepy stupor, I heard him say, “Mama, my eyes burn.”  I was used to him waking me with a bloody nose, but I was not prepared for streams of blood running from his eyes down his cheeks and dripping onto my sheets. Within seconds my husband and I were up and fully awake.  In my panic, I didn’t know if I should call 911 or a priest.  It truly frightened me.  Our son, Anthony, had been having numerous nose bleeds and we were early into his diagnosis of Von Willebrand’s Disease.  We had not yet started factor infusions and were still green to the whole bleeding disorder community.  I was well versed in how to handle bloody noses, but what the heck do I do for bloody eyes?

Little Anthony and his big sister

I immediately called our doctor and was reassured there was no reason for great alarm.  He told me to treat it as a nose bleed. Pinch the nose, lean forward slightly, and close eyes tightly.  I guess it is not completely uncommon for blood to back-up into the tear ducts.  If you have ever cried hard, you know tears and snot start to run from your nose.  The reverse is true as well.  If you bleed profusely from the nose, the blood can run “upstream” to come out your tear ducts.  It makes for a very frightening scene, but not one for any more concern than a nose bleed. 

Brothers being goofy

Anthony has Type 2m Von Willebrand’s Disease and we now treat his bleeds with Factor VIII.  His nose bleeds are under control for the most part and we haven’t had an eye bleed for several years. However, we still keep our eye out (pardon the pun) for bleeding from his tear ducts.  Eye bleeds are not any more frightening than a nose bleed but anyone with a bleeding disorder must treat all bleeds with his/her prescribed protocol. 

Anthony, 2011

Now when he starts a new school year, I email his teachers to warn them that he is not possessed; he just needs to close his eyes tightly and have someone walk him to the nurse where he can get a dose of factor.  No exorcism, just factor.

-Diane

Our Staff: Jessica

Read about Jessica and how she became our wonderful program director. :)

Jessica

How is it, that the one thing we probably know the most about (ourselves), is often the one that is hardest to explain?  I guess I will start with the generic:  Hi! My name is Jessica.  My last name is Casper—for two more weeks—and then it will be Klass (pronounced like good ol’ Santa’s last name, not like “class”).  I am getting married in Cleveland, OH which come to find out, isn’t actually every bride’s dream destination location.  Who knew?  My soon-to-be husband is named Andy and we live in north Phoenix with our dog, Koko.  She is the ruler of all that goes on in our home.  If you met her, you would understand.  I mean, look at those teeth!  

On a day off, you can catch me taking photos, hiking, trying a new restaurant, or spending time with family and friends.  I have a large family.  In fact, my parents divorced and I have half siblings on each side.  Ironically, they all get along, and we all love spending time together when we can.  How cool is that?

I have one of those “back in the day” relationships with the Arizona Hemophilia Association.  I mean, remember when there was no “Arizona” in the name?  I do.  It was twenty-two years ago that my brother, Jeff, was diagnosed with hemophilia.  This was back in a time where no one even know what hemophilia was and it took a number of tests and accusations for that matter, to determine what was wrong.  I remember the first time my brother bled, not typical skinning of the knees bleeding but much more intense, much more traumatic.  Even as a five year old, I knew something was wrong.  My mom still says “I never wanted to be the mom that put her son in a playpen” and then it came to the point where she had no other choice because she was too worried about him getting hurt.  Every time Jeff would get a bleed, we would drive the I-17 to Phoenix Children’s Hospital in order for him to get infused.  I hated when that happened.  I would sit there in the play area surrounded by kids who were ill and it made me feel so bad.  When you are that young though, you can’t process and you can’t understand as much as you do when you are older.

It was true, I thought my family really just had it bad.  Why my family?  Why my brother? 

Just as a I remember my brother’s first big bleeding episode, I also remember the first time I realized my family didn’t really have it as bad as I thought.  My first year of camp closed with the pinecone ceremony (another tradition).  I was hearing all of these people talk about HIV and AIDS as they tossed their pinecone into their fire.  People were crying.  Then I cried.  I didn’t know why, but I felt like there was a reason to be.  Everyone around me was sad and they seemed to know something I didn’t. 

People who went to camp “back in the day” as I put it, will remember Jeremy Storms.  In fact, to this day, we commemorate Jeremy by gifting an award to one single camper each year that best displays the Camp HONOR spirit and values—something that Jeremy did well.  Not many people know this story, but after the pinecone ceremony, Jeremy had explained to me why everyone was so upset.  This was the first time I learned how lucky my brother was and how if he were born just a couple years earlier, his name could have been attached to one of those pine cones as they disappeared into the orange flames.  I would never have to worry about that.

It is without a doubt that the conversation between Jeremy and me, helped encourage me to want to be involved.  I started working for the Arizona Hemophilia Association when I was nineteen.  I stayed working there until I was twenty-five.  Through those years I was always part time while in college or even on breaks once I got into teaching.  I taught eighth grade for two years.  I loved teaching but I never felt fulfilled.  I always left feeling like I didn’t complete the job.  Perhaps that’s a good thing for a teacher to think, but it didn’t feel like a good thing. 

I am so happy to be back working with the Arizona Hemophilia Association as the Program Director.  I get to participate in all of the programs and see the impact that my coworkers’ hard work makes.  I am always excited to see your familiar faces and if I haven’t met you yet, I will certainly be excited to meet you in the future.

My best!

Jessica

A Retreat Treat

Diane's experience at the Women's Retreat two weeks ago:

This year was the first year I participated in the Women’s Retreat.  In previous years I felt I was “too busy” and chose not to participate.  However, this year I have decided to do more activities for me and my well-being.   Boy, am I glad I went.

Diane, Amanda (daughter), and Yolanda

I had not been horseback riding in a…well…lifetime and I was nervous about mounting and riding.  The staff at White Stallion reassured me and I was lucky enough to be matched with a “young feisty” steed, Rawhide.  He was quite the character but we were a match.  He liked to snack, couldn’t sit still, tripped on rocks, and listened when he wanted to.  We had a lot in common from the get-go.  Thank you, Rawhide, for helping to build my confidence.  If I can ride that large school bus-sized horse without killing myself, then I can do ‘bout anything.

"Rawhide"

The weekend was an emotional one for me.  I was excited to be spending time with my daughter and some fantastically strong women and I really enjoyed sharing our thoughts, troubles, and jubilations together.  I cried and laughed and relaxed all at the same time.  I would tell you more, but what happens on retreat, stays on retreat.  I returned home exhausted yet rejuvenated.  I am definitely looking forward to returning next year.

-Diane

Meet a Dad in Action 2

Another interview with a Dad in Action. Remember to contact Jessica about the next event! :)

Meet Tom

1. Programs you participate in the AHA:

The biggest would be annual meeting, then Camp HUG, and the Salsa Challenge and Walk

2. What are you most interested in gaining from Dads in Action?

It interested me to see if there is something to gain from this or even if there is something I can give back as a dad who has dealt with issues having a son with a bleeding disorder.

3. What would you tell a dad who hasn't attended an AHA event, but is considering it?

Well I hope that as a parent of a child with a bleeding disorder, they would look into all options and avenues to help cope with whatever problem they encounter and use all the tools that are available through the Association to hopefully find a solution or at least some type of answer. So with that I would strongly push them to attend at least the Annual Meeting because at least there they can find resources that can or maybe not give them the full answer but the right direction to go.

Tom and Dylan Scott

4. It's a day off work for you, what would you be doing for fun? 

Personally since I'm away so much spending time with everyone either watching a movie together just walking around the mall or someday if we can get Rylee to go camping we can add that to the list.

5. What is your favorite activity to do with the kids? 

Same as question 4, basically whatever they want and we can afford it I'm for it.

6. What do you do to support your child with a bleeding disorder? 

Tough question at least for me, I do try to be involved in everything I can, but a lot of times my work schedule just kills my efforts. It keeps we away from events such as doctor visits for functions related to the Association, so Christy will keep me updated on things and issues so I don't fall behind so at least I'm aware.

Just to add I think over the years we have seen the Association grow from its infant stages to where they are now and we hope to be around to see how great they become. Especially with the addition of different groups like BleedHERs for the moms and women with a bleeding disorder so they can break away for a short while, meet other women in the same issues and discuss with each other and find out they are not alone and they create a network and a bonding and new friendships.These things help in such a huge way some people can't imagine. That's why I'm glad to see the Brotherhood and Dads group starting up so that there is a foundation to where new dads who just found out about their child's bleeding disorder can know they aren't alone and these groups are some places you can meet and hang out, talk or just listen and hopefully find what one is looking for.