My friend Amy shared a wonderful video on Facebook a couple of days ago. It gave me the chance to see my life through someone else's. The video speaks of everything Michael and I do every day to ensure Rocco has a normal life, long and free of complications. This video says it all.
This video helped me see my life through this mom and dad's story. I cried while watching it. I was halfway through it and I wondered why I was so captivated by their story. I just kept feeling so bad for the mom. Watching her struggle and seeing her worried face, I understood her pain. Then, when the cute, little boy said, "This is what my mom looks like when she's worried," It hit me. She was me. I asked myself, "Is that what I look like all day? Is that what they see when I worry?"
I remember one time when the boys were two, I was worried about something (I can't remember what now) but I sat down and slumped, exhausted and defeated. Rocco came over to me he put his tiny arm around my shoulders and said, "Rewax mommy. Just rewax."
Now, I often chant that to myself in my moments of overwhelming parenthood. It lightens me as I remember that feeling of that tiny little arm around me. Haha!
Also, as I watched it, I saw the mom moving through her day. I was mesmerized by watching her daily activites. I watched her as she carried on her day, all the while dedicating every step along the way to her son's care. I related to her instantly.
If someone asked you what do you do all day. It's really hard to answer, isn't it?
It's really hard for me to answer too, because most of my daily tasks seem very mundane. These activities, when I say them out loud, don’t seem as noteworthy as those of someone with conference calls, flights, deadlines and itineraries. My daily activities are basic. However, there is one activity that I accomplish every day that until I heard it in this video, I’ve never given myself credit for. It is my main activity. It is my most prominent activity. It IS what I do all day.
I keep my son alive.
I know it sounds very melodramatic, but it is true. It is the basis for every single activity I do.
If I go to Target to get groceries, I get snacks under 15 carbs because there is no recess after snack time. When there is no recess, Rocco doesn't get the exercise he needs to help him process high-carb foods. If I get something with more than 15 carbs for these times, Rocco's blood sugar always seems to go too high.
If his blood sugar is high for more than a couple of readings, I go to his school to change his port.
When I research after-school activities, I look for one for which I can be there to monitor his blood sugar throughout the activity.
When I plan family vacations, I find ones that are not too swim-intensive because I don't want Rocco to have his pump off for very long.
Every meal I plan, I consider his previous blood sugars when finalizing the menu.
So, if you were to ask me, "What do you do all day?" I would have to say, "Well, I went to Target, I cleaned my house and I kept my kid alive all day." Even as I type the words they seem too dramatic to "type out loud”. However, as dramatic as they are, they are still true.
As parents caring for kids with diabetes we go about our days with a combination of hope and anxiety. Defeat hits us at least once a day, but so does triumph. The roller coaster that our kids feel physically exactly mirrors what we feel emotionally.
It is no surprise that we say "test" your blood sugar. That reading on the blood sugar monitor gives us the same feeling as when you used to look at your test scores in college. That "hold your breath to see if you tried hard enough" feeling. We live with that same anxiety all day and night. Sometimes, we catch a break and the number is in range and we feel triumphant! Like we aced the final!I started this blog because I wanted to connect with other parents caring for kids with Type 1 diabetes. I have met many great parents along the way. I have also used this blog as my therapy, many times. It has saved me in some of my darkest moments. Since my job is to be Rocco's pancreas, I don't get a physical paycheck each week. However, when people write to me and tell me they hopped on my blog and felt related to or connected with me, it fills me up so much! I tell my family those comments are like my "paychecks", because when people leave comments or emails about how my words and/or experiences have helped them, I feel like I just got paid!
I want to thank these parents for sharing their story through JDRF. It has helped me in so many ways.
So if you have ever reached out to me, to thank me for sharing my feelings, I would like to thank you. Your comments and insights help power me to keep writing and sharing. After watching this video, I know understand even more how good it feels to know someone else is traveling your same path!
I hope you enjoy the video as much as I did. Thanks again to Amy for sharing it. Gotta love Facebook!
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Actually, surprisingly, he kind of likes it. I should have known. Rocco is always up for an adventure. You could take him to an open field to pick up random garbage that had blown there and he would make up some story where he and Zeke were on a secret mission to clean up "THEEE WHOOOLE WOOOORLDDD!!!!" I should have known that being an advocate would suit him. Just another adventure in his eyes!
Our latest adventure is the JDRF Promise Ball, scheduled for early May. We are very flattered to be one of the families in the video they will show during the event!
In the video, my father-in-law, Rocco, a nice young man and two of the sweetest sisters you will EVER meet will explain what it is like to live with Type 1 diabetes every day. I instantly bonded with the mom of the sisters while making the video. When you meet another D-mom (as we like to call ourselves), it is pretty much an instant connection between kindred spirits. Warriors who are fighting in the same battle. This mom was wonderful! It was a double bonus because she is also a blogger and she shares her experiences of raising not one but TWO kids with Type 1diabetes. You can read her blog at www.naturallysweetsisters.com!
The Promise Ball is a black-tie event sponsored by JDRF to raise money for the Artificial Pancreas Project. JDRF has made the development of an artificial pancreas a research priority because of its potential to revolutionize diabetes care.
It is an honor to be able to share our story in support of this important initiative. Of course, we will still be focused on an actual cure, but this is a great next step until the cure is found. When the artificial pancreas device is perfected, it will directly impact Rocco's future, hopefully as soon as when he goes to middle school!
Plus, I get to dress the boys up in tuxedos! I know... not AS important but still super fun!
The other day we went to the tuxedo store and the boys picked out their styles for the tuxedos and the ties. Zeke asked for a long tie, of course (more professional and less attention drawn). Zeke does not like too much attention. Rocco opted for a bright green bow tie. He loves green!
It is very exciting to be part of a process that will benefit Rocco and tens of thousands of others with Type 1 diabetes! Thanks to Susan Kossik of JDRF for the opportunity!
Here is more information about the event.
Just click the picture!
If you would like to make a donation to Rocco's page, here is the link! Thanks for always being so supportive. Rocco really appreciates it! Me too!
"Wow mom, that port change didn't even hurt!" said Rocco. "Great honey! Sometimes we get lucky," I happily replied.
I should have known, but I didn't.
Until three hours later when this showed up.
You see, when I change Rocco's port, there is a little straw-like part that goes into his skin.
His pump administers a continuous drip of insulin, and we supplement this with an extra dose any time he eats, or when his blood sugar is high.
The insulin travels through the tubing and then gets absorbed into his skin through this straw.
The port is the part that sticks to the outside of his skin so the straw can stay inside his skin.
We have to change this port every three days.
When I changed it this time the straw-like part didn't actually puncture the skin. It just bent over. So he didn't get any insulin for three hours. The result was a super-high blood sugar reading of 503. His normal number should be around 100. This doesn't happen very often. Actually I don't remember the last time it did. But it does happen. It's just one of the crappy parts of diabetes.
When I pulled the port off, it looked like this.
It should have looked like this.
This meant we had to do another port change. This time it did hurt (just a little), so we knew it worked. Phew! "Sorry, Rocco honey!"
Within two hours, the insulin hit him his blood sugar was 90. Thank God high blood sugars are only temporary.
When things like this happen it brings me back into the reality and severity of our situation. It reminds me that Rocco can't go without insulin for even three hours.
I always wonder, "How is he ever going to do this on his own?"
Kids are forgetful. Boys can be absent-minded. He will forget to change his port or to administer an extra dose to cover a meal. I know he will. Adults forget so how is he going to remember when he is thirteen years old nd he is at his friend's house playing video games? Forgetting once or twice is not a show stopper, but he won't be able to forget too often because this is a 24-hour-a-day, seven-day-a-week job. Everything he eats has to be measured and accounted for. He will have to do each port change on his own during finals week in his dorm room. Where will I be? How am I ever going to let him go to college?
This unknown and scary part of diabetes sometimes creeps up on me. I know it will work out. I spend every day making sure he knows how to handle each situation when it comes up when I am not around as he grows into adulthood. But the bad part is once this happens, without my help, he is never going to have an “off day.” A mindless day where he doesn't have to be thinking all the time of carbs vs. exercise vs. stress vs. insulin. How will he do all of this conscious diabetes thinking while living in the dorms, having a girlfriend, going on a job interview, driving his friends to the prom, holding his first baby, or doing yard work? All of these daily tasks will require his full attention on his diabetes first and everything else will have to come second. During all of these major life events, he will still have to consider what his blood sugar number is. How? Seriously, how will he do it? I trust him completely, so my mind knows he will care for himself responsibly. But, my heart never seems to catch up to my head.
My brain knows if anybody can do this, it's Rocco. He has been responsible about his condition since he was three-years-old. My friend remembers watching him and his brother one time. He walked right into her house and told her "I have three skittles in my pocket in case my blood sugar goes low while I’m here." She still can't believe that this little three-year-old didn't just reach into his pocket and eat the damn candy! He knew even then that he needed that sugar in case of emergency. I know he will be fine. He will barrel through it just like he does everything else. I just wish he didn't have to...
Yes, some days this does creep up on me...