Our local Yogurt Shop is sponsoring the JDRF (Juvenile Diabetic Research Foundation) walk to CURE, and I was taking photos of Sean with Lily, the owner, who we've known for almost 7yrs now. (Please consider joining TEAM BELIEVE online or in person Apr 5, 2014 at The Diamond in Lake Elsinore, CA.)
This mom saw the poster and sponsor sneakers, approached me and we started chatting. She asked me, "Why the dog?" (She knows about them and her son has been diagnosed for 5yrs now).See, up until now, I've been educating and advocating for "T1" awareness. Most our donors did not know the risks of this life-threatening disease. Nor did they know SIMPLE FACTS. People do not realize that Sean's hourly insulin pump device literally keeps him alive.
Because DADs are on the trend in recent years, I've found more "veteran type 1's" question it. The non-diabetic world is just being TOLD about it.
I answered, "Two years ago, I could not answer that good question with my own thoughts. I heard people say what they are capable of... people said, "they smell low blood sugar" (which we know is not the case. They smell something rather unique within the RISE and FALL when blood sugar CHANGES...), "these are life-saving dogs", they night alert during sleep", etc. And I just responded, "Yea, all that. Gimme' that."
Our son was in the "honeymoon stage" hardcore when diagnosed Jan 31, 2012. His pancreas was still fighting to produce its own insulin which meant when it could, he would drop significantly. Doses weren't adjusted properly yet, and he was in the 40's almost EVERY day at school for 3 months, DESPITE my daily call to his Endo and nurse. We are like forever pals now. I am VERY supportive of finding the right Endo you can page, who will call you back, especially in those first months. (Regular range is 90-120/150) Under 70 and over 180 needs attention.
That early summer he seemed "fine." For 3 months we hardly had any drama. Then RUGBY started up again. And his blood sugar dropped and dropped, and school started in the fall, and he dropped and dropped. We discovered PE was a danger NO MATTER how many carbs he had beforehand, after, etc. We also trouble-shot and found he drops during math (coz he's like insane math-savvy and does it all in his head). We made adjustments. His ENDO wrote him out of PE and yet "not doing rugby" was not an option.
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| 2 weeks before Dx'd. With USA Eagles Cap Matt "Polar Bear" Hawkins |
Rugby has been Sean's sport since 2011, just months before he was diagnosed. He lost 23 pounds in 5 months, was in organ failure, and still played a 6 hour tournament in the cold pouring down rain. (2 weeks before ICU and in DKA- Diabetic Keto-Acedosis; which causes coma and death). Only ONCE in the months of misdiagnosis, did he call himself out of a half due to shortness of breath. His coach, (now with him 3yrs) welcomed him back to the team, and
Temecula Rugby Club is our second family. Once an ambulance came to a game; we had drama. Once it came for someone else, and as I hurried from my car, parents shouted, "It's NOT Sean!"
Rugby is my boy's passion. He can eat 200-400 carbs after a tournament with no insulin. His blood sugar SPIKES from the adrenaline and aggression, then BOOM. He's hit. HARD and drops. This happens no matter the Gatorade, "carbing up" etc. It happens 1.5-3hrs after a match; even up to 5-6 hours after a serious game day.
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| Sean now into his 3rd season! |
I explained this to the mom at Yogurt Island and she replied, "Yea, they are all so different." And they are. Do you think Sean goes home from a game with ANYONE but his second mom (best friends since his 3rd grade) or ME? Nope. He went to my parent's place after an away game near them, coz my dad and mom are the BEST grandparents ever...very involved in his health. They couldn't believe how much food he needed to even stay in the 70's. Our Endo can't believe it. (But he does, we document it and talk all the time).
So now you know why. I know why. It took a process of trouble-shooting his disease to know WHY and HOW the DAD would best benefit him. If Sean goes to low, it is also life-threatening. He carries a shot on his person 24/7 should he begin to seize or pass out from too low of blood sugar. So between food and sports/activity, his life is a constant, hourly balance.
Now I can tell our trainer, in my own word who is helping us with this DAD process, WHY Sean wants a diabetic alert dog! (And I called back the one trainer to tell her in MY OWN WORDS why we needed one, too)!
What about NIGHT ALERTING?
Ooo, you mean I can sleep? Nope. We can't leave the job to our dog. It's irresponsible.
I've come to learn not every dog is going to do it.
- It's a trained behavior.
- It's something to maintain, just like the rest of your DAD's alerting abilities...
- You will sleep LESS training for this and maintaining it.
And I've come to know Sean...
- If he feels his own decline he CANNOT SLEEP. Usually it's starts around 9pm, and sorts out before midnight, but there are quite a few "30-Rock" re-run evening dates with me until 2am.
- I KNOW he will mentally benefit from a CANINE companion also sniffing him out so he may rest better.
Our Endo wrote that last bullet point out ^^^ for us in a letter to our second service dog org. We also prepared Sean's 504 school-"protection plan" to include "Canine Companionship."
His disease, ADA protected, BY LAW, allows for him to have a service dog. The dog must perform tasks related to his disability. Period. Resource help on ADA here
But what about "DEAD IN BED?"
This horrible thing has happened. I do not personally (as in call them up) know those who have lost their children in their sleep, so I tread carefully and respectfully here. I will speak only on what I do know...
- I watched my son get lethargic for days and months on end and not wake up without serious assistance when we didn't know he was in organ failure from DKA. His A1C was 14.5 and his blood sugar so high, the meter didn't read it.
- I watched my best friend DIE a month later from DKA in her ICU bed. It was ugly. Too hard to detail. Young and beautiful, this disease had no respect.
- I know of a very savvy advocate in our T1 community that not only questioned the "dead in bed" statistic when we all began parroting it, but she went to the BEST of the BEST Endo's out of Boston and gathered some pretty fine research.
- Those found to have passed away in their sleep had an underlying cause other than T1 that contributed to their passing. Let that soak in for a second before hating on it. Does T1 cause complications? Absolutely. Would those complications happen if not for the Type 1? Probably not.
- I can't deny what she recently wrote in a FB convo, "no one gets a blood sugar reading after death." So, do we know if it was a low or high that caused it?
Doesn't matter. I read "DEAD IN BED" in 2012. I read 1:20 children die...and FLEW with it. Guilty as charged. I raised 15k in 5 months. Done. Almost a year later, getting the dog was nowhere in sight, and now I know why.
I had to GROW UP and reconsider WHY. Why do we need the dog? And in the meantime, I learned all these other viewpoints. I also felt HORRID for using "life-saving dog" as part of our campaign.
GOD HELP the first DAD team who's handler is lost to "dead in bed." Imagine the questions...."Who trained the dog? What org was THAT? Did the mom stop night-checking? My my, I would never..."
Pipe down. Yes you would. We all miss a night check some day or another. I'm still up on nights when my son is sick or growing, or something was "off" that day blood-sugar wise.
I recently posted around 1:30am in this T1 parent group (where I've been a member for years now) "my son's not gonna die in his sleep..." I had to rephrase that, and tap into my true feelings coz I was getting eaten alive and it was removed because of D-mamas that didn't read it carefully. It looked like a bossy-attack on parenting style. I get it. You go, mama bears! I was stalked (followed, actually, does that count?) afterward on FB and messaged by one other really upset mom. We sorted it out.
I was trying to share my mentally "free" self. I conceded to the fact I could no longer control this disease. It has a mind of its own, and I had succumbed to it's ever potent FEAR FACTOR for 2 years now. I gained weight from the lack of sleep and stress, plus I eventually needed anti-anxiety meds upon the year anniversary of it all...It was UGLY, folks! I almost LOST MY SON! Then I lost my BEST FRIEND to the same disease; shaking incessantly through her funeral! Hot mess, right here. And I bet you can relate. Or know someone who does.
God bless the internet and all our FB support and help but MAN it can be a CURSE, too. We are parroting info junkies, but sometimes the info isn't accurate. Or it's deceiving. Maybe we think we understand something so well, we campaign to help everyone! (guilty again)
Did you know:
- There is no gov't or (federal level law) that says a DAD must be certified
- There's no nationwide regulation (backed up legally) that specifies the way you train
- Nor is there anything that regulates the organization you pick having to meet certain standards.
- There's no "registration." Certification is OPTIONAL.
- CGC (Canine Good Citizen) and PAT (Public Access Test) are pocket protectors if you end up suing or being in court. Your training logs work just as legitimately since (AGAIN) there's no FED REGULATION on DAD's (let alone service dogs in general.).
- The ADA IS LAW. Know your state laws regarding service dogs- GOOGLE is your friend.
- Know these things BEFORE you get approached by a school district employee. Initiate it confidently, and take in what you know for proof.
- Legit service dogs don't even need vests or ID tags. Does it help? For some, and it causes a LOT of heated argument for others.
INSTEAD OF EDUCATING on the laws, we conform to expectations and critical businesses so we get them. We use them. Of COURSE it helps to have a vest. Especially with patches and directions "don't pet" on them (well, sometimes). It does NOT help to carry paperwork and certs unless you have a different kind of service dog which I touch on in this BLOG here... But (some) airlines prefer paperwork. They are not held to ADA standards. They made their own; the ACAA, and ATA, and cause a grip of stink due to what they "observe" as legitimate service dogs.
We get caught up in fundraising worries (that's no FUN)! But it's the first item of business when wanting a DAD. How are we gonna get that kind of money? I just wrote back a woman who asked us how we did it and said, "Raising funds was a full-time job. I ignored my family for 4 months. I believe it takes dedication and a few hundred of your own dollars to accomplish about 3-5K with very little, but WISE effort. Something more (like events and social media) get you in the 5-7K range. And acts of God plus a serious fundraising 'ethic', get you above that."
I wrote a blog on HOW TO raise 15k in 5 months. It has every single idea I got up my sleeve. You will see these ideas repeated in fundraising advice circles. I believe fundraising is PERSONAL. You better open up. Tell everyone you know what you are doing and WHY. Tell the lady at the yogurt shop who smiles every time you walk in. Tell your family. Make flyers and place them at your DOOR, in your HOME. Everyone who leaves gets one. Ask if you can share your story in groups- bible studies, churches, team meetings, work, at your Endo's office. Prepare to leave them with something (like a Vista print card, or small flyer) so they know HOW TO HELP YOU. Know your story in 30 sec. verbally. You are going to get sick of the sound of your own voice. But it'll happen. Send out letters, THEN emails. Include a self addresses stamped envelope and hit up everyone who sent you a Christmas card. You matter to them. They think of you. Send it also to your parent's list. They love you, too, because they love your family and probably heard about your diagnosis.
Be FAIR in educating others as to what this dog is going to do for your T1. Again, know WHY. People believe what you are passionate about and vulnerable enough to share with them. I've had ONE person not believe me this entire journey. She had the balls to tell me! I was impressed by her honesty. She didn't believe how screwed we had gotten by a certain DAD organization. That's fine. I wasn't building and army, nor bashing them by name. I was sharing our experience, and how that got us to where we are now.
Your journey is going to be long. It's going to be ugly. You can hide whatever you wish. (I choose to be respectful to our former org, and overall to the industry, because I believe in these DOGS and the happy families getting them without drama.)
I speak to clients like us who think they've "fallen through the cracks" with their org or trainer, and help them gain perspective. Sometimes we even solve the problem so they can continue with confidence after they talk it out with their place (like I did with our DAD orgs). I'm a nobody. I'm a mom on a mission to help my son. But I've been there and done that. And it doesn't come down to them. It comes down to you.
At my friend's funeral they said, "this disease has no respect. You can do 100% of the work T1 requires, but there's a 50% chance that matters or makes an impact." Accurate or not, I heard that just 3 weeks out of the hospital staring at a family who lost their wife and mother.
I decided that day, I would do 100% of that 50% for my son. That's all the "why" I needed to drive us to today. Gaining perspective and knowledge, while making mistakes along the way, helps us confidently trail blaze on...
See where we are today!
Share your story, add to the mix: Comment below!
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