Wednesday, May 12, 2010

Day 3 - My Biggest Supporter(s)

I love my team!  Aside from a few roadblocks we encountered initially with getting things set up at school, support is one thing that has abounded since day one.

My family of course is critical in the day-to-day.  I couldn’t do this alone and even though I get frustrated sometimes when things go awry, I know deep down that everyone in the house has Jonathan's best interests at heart and will do their part to make sure he's safe and healthy.  It's difficult to describe in words, but some days it almost seems like my wife and I are each one arm of the same body as we hand off to one another that actions taken to keep things on track.  Our daughter is an absolute sweetheart when it comes to this (other areas not so much sometimes), she demonstrates a sincere concern and caring for her little brother and is patient and understanding when he needs our attention or we have to deny certain things.  Jonathan is my superstar.  This is his cross to bear and he does so with a dignity and strength that amazes me every day.  He accepts that he has to be tested and poked, and he is understanding that sometimes there are compromises, trade-offs, and delays.  He's not always happy when things don't go his way, but for the most part he deals with it rather well.

Outside of the house, and outside of my line of sight, there are a number of individuals that play an important role in his day.  In the mornings his teacher is primarily responsible for him, and while she can't test or give insulin she has taken a keen interest since day one and been very active in monitoring him and ensuring that necessary steps are taken if there is suspicion of an issue.  Just before lunch a nurse visits him; usually the same one each day will come to check his BG and give him his NovoRapid, then sees him off to Latchkey.  At Latchkey there are a number of people that, like his teacher, are aware of his needs and have become adept at working with us to make sure that he's in check and gets through the rest of his day safely.  They school team has also done a fantastic job of letting him be a 4 year old kid first and a diabetic second which is also very important to us.

Two other important team members to note are my mother and our sitter.  Despite the attention and consideration that must be paid to D, we make it a point to not to let it gain control over our lives.  To that end, we still have two people that are capable and trusted who can care for Jonathan in our stead.  From time to time we do need to get away, even if it's just a few hours or occasionally for a night.  We lucked out with our sitter as she is not only really good with the kids, but as a second year biology student she has an acceptance and understanding of the need to monitor him, test, and if necessary give snacks - she keeps us informed via texts and we can send instructions the same way without any major disruptions.  My mother really stepped up and this all started.  She was the first one to ask for training at the hospital, the only one besides my wife and I that saw it through.  Although it took some time to get comfortable with everything, she now has the kids visit for a night from time to time and has so far successfully navigated the minefield.

Then there were the first ones to come to our rescue.  There is a group of dedicated professionals that we were introduced to during the first days after diagnosis.  The team at the hospital is amazing.  We have access to nurses (some of whom are Certified Diabetes Educators), a dietician who is also a CDE, pediatricians, endocrinologists (via our paed), social workers and children's life services people.  The 8-4/Mon-Fri schedule of the clinic not withstanding, I have yet to encounter a management situation they have not been able to help me through and If need be, the ER is the after-hours go to, but thankfully we have not been there since the initial Dx.  I have found them to be one of the most caring and supportive groups of people that I have ever met.  In hours we went from being total strangers to part of their "family".

Finally, but certainly not least, everyone here.  In this online community I've found a huge amount of support and reassurances that we are not alone, and that is a very powerful thing.  Coming here and sharing our adventures helps keep me sane (as close to it as possible anyway) and gives me a lot of good food for though… dealing with highs and lows, to pump or not to pump, living with D, etc...

It's hard to say who the biggest supporter is.  It really is a team effort.  While some team members have more knowledge about biology and medicine, others have more day to day responsibility, and some have a role isolated to a portion of the overall picture.  I can't pick one that I could do without as any gap would create an undesired challenge.  I would have to say that my biggest supporter is the team.


  1. It makes everything better when we have supporters :)

  2. WOW Marc! It sounds like you are surrounded by an AWESOME support network. And love our "Inner Circle" otherwise known as the "D.O.C" It helps to know we are not alone...doesn't it?

  3. I'm glad you have a team! It makes me sad to think there are families out there who are not as lucky as we are. We are blessed for sure.

  4. Sounds like you have a great team! The D.O.C has been an amazing source of strength and comfort for me as well.