Today Marks A Journey of Twenty Two Years—–What a Lesson!!!!

Kaitlyn Face CroppedIt is almost to the minute that my beeper went off 22 years ago.  On the screen were three numbers 9-1-1; something was very wrong at home.  Our ‘code’ had been implemented.  When created we, of course, thought it would never be needed, but there we were and the result would change our lives forever.

Kaitlyn at the age of two was diagnosed with diabetes.

So much has changed since that day—-even 9-1-1 would take on a whole new meaning nine years later in 2001.  What almost destroyed us morally, financially, and spiritually would be turned around into a strength I could never have imagined all based on one principle; diabetes would not do in our house; it would not win. Ever.

If you have diabetes as the new normal in your house recently, or even for a few years now; I would like to take today, Kaitlyn’s Diaversary (as so many call it) of today and share with you a few thoughts.   A few things that only 22 years of being a parent to a child with diabetes has taught me; or could teach me.

–Some people do not like when I say if you do not own diabetes, it surely will own you.  But I have found that to be true to this day.  And the way you own it is with knowledge.  We did everything we could to be updated and knowledgeable of not only management but where we decided to spend our time advocating.  We asked a million questions.  We demanded answers.  This has served us well.  the more you know, the more you will want to know more in this EVER CHANGING world.

–Diabetes will not stop anything.  We have lived by that belief.  Since the day Kaitlyn was diagnosed, diabetes would not be given the freedom to dictate her life.  When Kaitlyn said at the ripe ol’ age of nine “I have diabetes, diabetes IS NOT who I am”; the marching orders were loud and clear.  She would be allowed to try anything and everything as any other child who does not live with diabetes.  Sometimes that meant painfully holding back and allowing her to go forward.  THIS was not easy.  So many things could have happened but we knew as long as we ‘stood ready’ (even without her knowing sometimes), what she wanted to do in this life——-we let her.  Tough to hold back, not do, stand aside, watch from a distance; but we knew we had to and we did.

–We are never safe from life.  Because you have a child with diabetes you are ‘not done’.  Life can still throw crap at you and you have to at least acknowledge that point.  Set backs, another child diagnosed (which happened), long nights and even death was a factor on the table to face realistically.  But here is the difference; you can be paralyzed by that fear or you can live in RESPECT of that fear.  Respecting something means you will do everything you can to understand it; to know it; to learn about it; and at any cost make sure it is the pathway to travel.  Fear never ruled the way we did anything.  With all we learned, and all we know, we would do our best and after that we had no say in the matter.  It is up to God or whom/what-ever you believe.  But those were not just words….it IS HOW we lived.  Life can throw curveballs; be ready.  Life will always be just that, life.  We surely have been knocked down and each time (and perhaps bruised) we got up and continued.  Continuing is the key point.  Always continue.

–Believe in some thing, a group, and/or a cause—-and give them what you can.  I will not stop believing one iota that we will see a cure in Kaitlyn’s (and Rob’s) lifetime.  It gets my full attention.  I live by “don’t do nothing”.  My belief is also my career and no one knows more than I how fortunate I am that it has worked out this way.  I also know that many pathways need support and truly respect that others give energy to places/causes that they feel so passionate.  We all want attention to a cure/better management tools/ better education/to serve those in need/advocacy/awareness/supplies to everyone in need/and-so-much-more but the simple truth is that just one person cannot do all of that so it’s important that some pick-up something to give their full attention; but just as important is that we still support others.  I have learned that we all rise or fall together in this diabetes community.  All causes are important, just don’t do nothing.  Choose and run…..full speed (however that defines you).

–Mistakes.  I have said it a million times, no one has made more mistakes at this ‘diabetes thing’ more than I.  Whether it was the care for my two kids, or in dealing with diabetes in our community, I have made some real doozies.  But at the end of the day, we are all up at all hours dealing with this disease and until such time we are not; no single error is bigger than the fact that we must all continue at the very thing that got us started in the first place.  Diabetes is bigger than any one action any of us do—-the simple truth; it will be here tomorrow waiting so get back at it each and every time.

–Education.  This is the single best topic I can share with you.  At the end of the day, it all comes down to WHAT YOU know about diabetes.  In 22 years, we have never thought this aspect was completed.  You can speak to others, you can read, you can research, and with the ‘online’ aspect of today, everything is at your fingertips.  The single best gift you can give your child…….is knowledge.  You cannot give that until you know it.  Learn everything you can and open your mind to the fact that the way you are doing things, may be done better.  Maybe not; but know the difference and be ready to learn and also listen to your children.  Hear them.  They have something to tell you as well.  They are teachers as well and sometimes your best source of diabetes education. Challenge yourself, your medical team, and the organizations you advocate for at every given turn to do and be better.  All boats rise together.

I believe all those who have lived with this disease are heroes.  Kids doing what they are doing each day, and those who ‘lived it’ and share with us their experiences humble me to my knees.  Their blogs, sessions, and willingness to share with such honesty is mind-boggling.  Giving back to others is so important and we do what we do because so many did with us and continue to do so to this day.  I also know that MANY, MANY friends and family have joined us in this battle and they came forth with whatever talents and/or resources they have/had and we are beyond grateful.

Kaitlyn is actively pursuing her dream in the medical field.  Every single dream she has/had pursued from the age of 2 to today at the age of 24; she changed directions when she needed but the direction taken was never once——not once–dictated by diabetes.  She is my biggest teacher, (and now with her brother) my biggest desire to pursue a cure, my biggest inspiration, and more than anything else….she is a force to be reckoned with when she sets her mind to do something…….because “she has diabetes, diabetes is not who she is”.

Twenty two years baby, I’ll stay at it as long as you do.  KKNN

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

0 thoughts on “Today Marks A Journey of Twenty Two Years—–What a Lesson!!!!

  • Education- you are so right. I have met some patents who just don’t want to know more than the doctor has told them, no questions, and by implication, little input to their child’s care, or being their child’s advocate. That is our role. My son us 10 and diagnosed almost 2 years ago. I hope for a cure in his lifetime, but I make sure his lifetime will be the best it cam be despite diabetes. Thank you for this great blog. You have often put words to the thoughts in my head, and given me great validation.

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