Wednesday, March 19, 2014

Open letter to USA Rugby 7's - & Matt Hawkins

Jan 2012, just 2 weeks before diagnosed. With USA Eagles Cap Matt "Polar Bear" Hawkins (rt) and Nick Edwards (middle) and Garrett Bender (left)
March 2014
Dear Team,
In August 2011, our thriving oldest son, Sean, was beginning his first season of American football. He trained 2hrs a night and lost some significant weight. He was thirsty every night before bed, and we attributed it to his 7-9pm practice. Early November, he complained of some vision problems, headaches and nausea. Thinking there may be a concussion from a practice hit, doctors ran a CAT scan and Sean ended up with an emergency appendectomy. Later that month, football ended, and we were introduced to our local rugby club that had just started up. My parents and our best friends in Wales and England are HUGE fans, so we joined and have never looked back! Sean continued losing weight, (23 lbs total), and by January of 2012 we were at the Olympic Training Center for that freezing downpour tournament that couldn't have been more fun! Sean hadn't suffered his asthma problems in years, but at that tournament, he pulled himself out of a second half saying he was having trouble breathing; which we assumed was an asthma flare up. He caught his breath and wanted back in and took a cleat to the neck that delayed him getting to his next game on time. Which was a blessing, because we ran into you! Our Temecula Lions Rugby Club made it to the semi-finals! We lost, but we gained the passion for the sport for seasons to come.
The U10 Temecula Lions first visit to OTC
(Sean is far back left with "peace" brother Bryan far right)

Two weeks later, Sean looked really bad after his next game. He fell asleep right after, and was hard to wake up. He could not longer keep food down, even in small amounts. I took him to an Urgent Care doctor and said, "I know this sounds crazy, but here are all the weird symptoms these past months, and....I think he's dying."
Sean was in bad shape. He was in organ failure (Diabetic Keto-Acidosis) and rushed to ICU for 2 days and spent the rest of the week in the hospital. There is a test that can tell the body over the past 90 days what its blood sugar average was. For a non-diabetic, it's under 5.6. For Sean, he was 14.5 and it was a real "Twighlight Zone" kind of week. What is type 1 diabetes? How did he get it? Will it go away...?

1.5yrs after diagnosed, they met again-
Sean on pump now and MUCH healthier!
These were constant questions on our minds. We discovered Type 1 is an auto-immune disease that neither diet nor exercise caused or can cure him from suffering. He tested positive for it genetically, and auto-immune-wise; yet some environmental trigger (like a virus) caused it. It's forever. He will be on artificial insulin, to be pumped into his body by a needle or machine on an hourly basis, or he will die. It's life-support. The problem is, the very thing that helps Sean can harm him. The part of the pancreas that produces insulin naturally for non-diabetics, releases blood sugar in the body naturally, in the proper amount. For Sean, it's all calculations based on what he is eating; and if he is going to play rugby...And, well, going back to rugby was a whole new nightmare.

By summer 7's, 2012, Sean's return to rugby got complicated. His blood sugar dropped consistently. School started in the fall, and he dropped and nearly collapsed on campus. We discovered PE was a danger NO MATTER how many carbs he had beforehand, after, etc. We also trouble-shot and found Sean drops during math (coz he's like insane math-savvy and does it all in his head). We made adjustments. His Endocrinologist wrote him out of PE and yet "not doing rugby" was not an option for Sean.

Sean's youngest U10 brother (redhead in middle row)
 and sister, who played U8!

The normal range for Sean is 90-150. If he is under 70 he may get weak, seize, pass out or die (at zero). If Sean is not at least 130+, he cannot play. Once he begins playing, his adrenaline from the aggression sends his blood sugar soaring into the high 200's to 300's. When diagnosed, Sean was over 600, we aren't sure how high, since the machine couldn't read it.
Sean's brother and best friend, Bryan, also
 plays hooker and shares concern for Sean's
health management on and off the field.
Pictured with Eagles Manager
and former prop Tom Wagner

Temecula Rugby Club is our second family and was patient and accomodating during Sean's return to "normal," Once an ambulance came to a game; we had drama. Once at a practice, it came for someone else, and as I hurried from my car, parents shouted, "It's NOT Sean!" That was our first season back. We had to learn a LOT about being an athlete with Type 1 diabetes. Now he's doing GREAT. He's got a system for food, what to eat carb/protein-wise and how to quickly "carb up" with liquids like gatorade in order play, as he is a starting hooker. Sean's only challenges have been breaking bones easily. He's had over 11 boxer's fractures or finger's while playing, since being diagnosed. His Ortho now just puts him in a brace for a few weeks, as his pain tolerance is such that he won't tell me until AFTER a game is over that be broke something in the first half! 
That's Sean; a fighter. A kid who won't let this disease dictate his dreams and goals. It is uncontrollable enough at times, it does not help to get viral infections, suffer any kind of injury, since blood sugar is connected to more than just food. It goes crazy with excitement, stress, anticipation, etc. It's something I am very proud to say that my (now) teen son manages beautifully.

Sean has had two very frightening low in the past 2 years. It happened just days after we were back, full circle at the Olympic Training Center again this past weekend. He did not realize he got to 27 and we were told he may seize or pass out in the 20's or below. Sean carries an emergency glucagon (sugar) shot on his person, 24/7 just for this type of moment. He did not suffer in any major way as this occurred. In fact, he said he felt his adrenaline kick in (which he knows from playing). So he checked. Afterward, he complained of a headache and exhaustion.
This past April, 2015, Sean collapsed in my arms and seized, then lay completely lifeless. This recovery took a lot longer but he is back to rugby this winter, even training with the pathway to High School All Americans; Eagle Impact Rugby Academy.

The constant inspiration our whole family experiences with this sport is undeniable. Rugby has brought us all together more, and makes us support one another in more ways than we are used to. It's a nice break from the stress and management from daily/hourly diabetes awareness. When Sean plays, he is FREE. He is not connected to anything. No tubes, no concern on anything but the game and doing his best. It's a joy to watch him thrive again and we thank you for always being so gracious and remembering who he is when we run into one another. It's done wonders for his spirit. He hopes to make a mark on this world, and show others that he is able to follow his dream despite Type 1 Juvenile diabetes.

Thank you Eagles, for being a soaring inspiration to Sean, and for checking on him and talking to him when we run into one another at rugby events.

Booth-Rugger Clan
Sean now into his 3rd season! He gets to take his pump off to play every game, and I think he loves that, honestly. And yes, he is beast.

UPDATE! This summer at Serevi camp in Encinitas, CA Sean finally introduced his service dog to Matt

Proud parents at Cal State games 2014

2016 at Eagle Impact Rugby Academy training, Jan 31, on the 4th anniversary of his diagnosis, Sean is trained by Garrett Bender of the Eagles from very first picture above. And AGAIN, it was pouring rain! No pic available but here is Sean (U16) in his American Scrum cap.
Kim Wassan Photo

Wednesday, March 12, 2014

DADs for Dummies takes a look in the mirror

I have been writing for some time, without even owning a DAD. WHAT?! Oh yes. I speak of what I do not know...until now.

From 2012 until now I hoped my writing efforts would allow the "noob" (newcomer in gamer terms) grasp the ideas surrounding what this whole things looks like, from a "getting committed" standpoint.

I also wanted to find organizations outside ones we had experienced personally, because we had been with a well- known CA organization for nearly a year. Committed, fully funded. We then worked with a service dog organization that allowed our Type 1 teenager, Sean, to handle over a dozen of their dogs, learning valuable skills that would translate into his own experience someday.

What is unique about our situation is that we have an adolescent who was diagnosed at 11; he went from a "kid" to a "mini-adult" within that first year of diagnosis. Because we lost our family's best friend a month later to Type 1 complications, we gave a lot of the responsibility back to Sean. He did his own shots before leaving the hospital, and has carried his bag of supplies, since. We know first hand what DKA, (diabetic keto-acidosis from high blood sugar levels), coma and death look like, so we wanted him to take as much appropriate responsibility for his own life.  

This mentality translated into our son's DAD experience, too. Since Sean was told not to bond or get attached to any dogs with one org, (although we were around their dogs at various events), he did just that. The idea of a certain dog may have been nice, but since he had none, I'd guess there might have been a perceived "lack of interest" from Sean. The same perspective might have also carried over, regarding my level of desired participation. (These are just my humble opinions looking back). 

We wanted this to be HIS dog, HIS desire, and HIS responsibility. We have reasonable expectations on our kids. We had them close together, and I am disabled myself, so there is a lot of personal responsibility in our home. We are the parents, 24/7, and are preparing our kids to fly from the nest someday. I had already done the math... Sean had 5 years until he would leave home. That's nothing. His disease management + DAD had to be off to a good start...

The dog handling classes Sean took with our last organization were priceless. He/we were all given "Service Dog 101" knowledge. These are the words/commands to use- and why... It was eye-opening and we learned more in 5-6mo/2 nights a month than imagined. Now we really knew what this was going to look like.

The key piece missing now was bond. Sean had not enjoyed the immense shedding from labradors. The level of hair to manage was new to us, since we have a Yorkie at home, and had a labradoodle at one time, as well. Sean and our labradoodle had an amazing bond. We (really me) thought a hypoallergenic DAD would be a great solution to this, and my "mommy-(thinks she)- knows-best, mentality got in the way of Sean's Journey. (Even tho when 11 he SAID had wanted a "fluffy" as he called it- he he).

It all came to a stop when we realized our son really had no interested in a curly-haired poodle named Brulee. He was going on 14 within the year, already thinking ahead to High School, and picturing the rugby field with his team mates. Though this cutie pie dog was a definite chick-magnet and soon to be his, we decided it best to go back to the drawing board. There was too much at stake. Thousands of dollars (as much as a new vehicle), friends and family waiting on us...We had another "sit down" and realized our son needed the dog he was going to fall in love with. He needed to name it. He needed to choose it. He is his own man now, and this was his journey, after-all.

Finally this month we are "Ready to Fly!" Our DAD has been home with us 2 weeks for bonding, and goes on to live with a professional DAD trainer soon. Just in these few weeks the bond between Sean and "Flint" is undeniable. We have all come alongside our son, assisting him when needed with Flint; but he is all over it this round. It may have been a long and dramatic road to travel to get us to "just a puppy" but it is what needed to happen for Sean, as this is all about him, and what was going to work best for our family.

The Facebook "DAD world" is a wonderful place to network and find good advice. It is also a terrible place sometimes, and may be severely catty if/when you got a bulls-eye on your back. Now that we are finally "in the thick of it" I've promised to put the focus back on Sean and his dog. Coz I'm mom, afterall. I will miss what I perceived as being helpful to this community online, and apologize for my lack of a proper goodbye in some of my own groups. 

I do love to share and write, so I have launched for those in our lives who have truly partnered in spirit with us. I will keep writing here, at times, so please "follow" this blog, or check in as often as you want! It's not about me, it's about you, it's about Sean... it's about our Type 1 community and these dogs. 

Anna Booth
(mom, wife, writer and homeschooler of the most amazing 4 gingers I know)
Interested in a Diabetic Alert Dog? please check out this link on "How to Get a Dog"