Monday, August 15, 2011

Our Story

In January 2000, I was 3 months pregnant with our third baby.  I had just quit doing home daycare, started a new job and was days away from starting work on my Master's degree.  Over Christmas, we had noticed that Tylie, our 4 year old, had been eating more.  At times she ate non stop, but she was a tiny thing so we just thought she was going through a growth spurt.  Then a few weeks later I began getting calls from daycare that she was wetting her pants during nap time.  My mom instinct knew something was wrong but I figured it could be fixed by antibiotics.  So, holding her in my lap at our family doctor and listening to him say he had a suspicion it was Diabetes and that he would need to refer us to someone else, I felt like I was an observer in someone else's life.  My husband had not even come to the appointment we were that sure it was nothing.  I remember looking at the doc as he talked and not hearing him but thinking, "I must not cry in front of this baby."  Somehow,  I got out of the office, an appointment scheduled with a pediatrician, and no idea what to do until then.  I honestly can't remember telling her dad or his reaction, such was my daze.  We met with an diabetes educator, who showed us how to check her blood sugar.  Because it was late in the day and her numbers weren't totally out of control, the doctor thought it would be less traumatic if she were admitted to the hospital in the morning so we could prepare her and she could have a good night's sleep at home.  However, it happened to be her dad's birthday and after a basket of tortilla chips her blood sugar spiked.  We called the doc and at 10:30 at night found ourselves driving to the hospital.  My stomach still turns thinking about it and the horrible sensation of watching her go from excited about this new adventure to terror when they tried too many times to insert an IV.  All of this could not be happening to my baby!  She was perfect!  Meanwhile, dad was holding it together and taking care of our 2 year old until grandma could help us out.  And so began our adventure with T1 Diabetes.

The next morning we were introduced to a diabetes educator and a nutritionist.  We were very lucky to have them.   Their realistic and reassuring approach helped to calm us, at least long enough to learn how we could possibly manage this incredible responsibility.  That doesn't mean doubts didn't exist or in the dark of the night I still don't think "what if" but I truly believe without these two women and our amazing support system of friends and family I would have been admitted to the psych ward before day 1 was over!  Remember I was pregnant- the hormones were raging and this was just too much.  I thought I'd have to quit working, couldn't imagine sending her to school, wondered when I'd ever sleep, how I would let her out of my mind wouldn't stop.   We learned new words like "cloudy" and "clear", "long acting and short acting."  The words "high" and "low" suddenly had new meaning. And we learned a "keytone" had nothing at all to do with music.   Tylie, on the other hand, seemed to be taking things in stride.  She insisted on bandaids after each fingerpoke.  We called her the Bandaid Queen and the nurses indulged her by giving her a new color each time.  While my stomach turned and my hand shook the first time I gave her a shot, she didn't even flinch.  She met the doctor with giggles and a resilience that still takes my breath away.  Somehow, though, we learned enough to take her home. 

And life moved on.  Her little sister, Taya, watched her intently and idolized her every move.  Her nickname was Me Too.  However, getting diagnosed with T1, in my opinion, was carrying the idolization too far.  But, shortly after Tessa's first birthday, that was exactly what happened.  I was in class and when I got home my husband said he had a feeling about Taya and checked her blood sugar.  Sure enough- it was high.  We called our doc, who ran the tests and confirmed the diagnosis.  This time, I do distinctly remember her dad being angry.  I didn't want to think about it- anger, sadness, fear-  I just knew I had 3 babies to take care of and I was already barely holding on.  But, we had caught it so early that she did not have keytones and so she was not admitted to the hospital.  She marched out of her appointment so proud of her kit that matched her sister's.  That excitement did not last long and of the 3 of them, she is the one who is noticeably the most angry, the one who didn't want anyone to know, the one who cried every time she had to have a shot.  Thank goodness the pump has freed her from the 6+ daily shots she was getting. 

Miraculously, Tessa made it through age 4.5 without any more trouble than having her tonsils removed.  And we smiled after TJ turned 5- sure we had dodged another bullet.  But then, January 8, 2010- nearly 10 years to the day of Tylie's diagnosis we found ourselves back in the hospital.  By then, the girls were both on pumps so this whole notion of giving shots was just as foreign as it was the first time around.  And I was furious.  This could not happen again- not to my baby boy!  It was much harder to hide the tears this time around when we know our team so well and they know us.  Their grief at his diagnosis was as genuine as ours.  But, our little boy met the challenge and his sister's jumped in to help him out.  However, he was still not gaining weight and his other blood work was off.  Eventually, an endoscopy showed positive for Celiac Disease.  I have to tell you I think this was the worst.  We had taken to heart that "above all they are kids first."  We never told them they couldn't eat cake at birthday parties or that candy was off limits.  We just tried to show them balance and moderation, something every child should learn.  Now, here we were faced with telling our son he could not eat those cookies he loved and he'd have to bring his own pizza to the class pizza party.  I actually cried in the store the first time I went shopping because the checker had forgotten to ring up the chocolate pudding.  The one normal thing he could eat!  And that idiot checker wanted me to go back in line to pay for it!  Lucky for us we are blessed with an amazing little boy who has met this challenge with hardly a blink.  He was playing hockey the day after discharge and once his new diet was established he gained 6 pounds and grew half an inch in 1 month!  He is such a regular at the doc's office he knows the routines.   While on a trip we had to go to a walk in clinic for something unrelated to Diabetes or Celiac.  The nurse came in to get all his info down and as she moved to leave he said, "Excuse me, but you forgot to check my blood pressure."  The nurse looked at me like I was some sort of crazy person, while I just smiled and shrugged. 

And, that is the story of my 3 T1's.  I still don't get it- we did everything right.  I read all the books, I took my vitamins and avoided caffeine when pregnant.  I nursed and didn't introduce a new food until the doctor told us it was okay.  Ironically, the kid that escaped T1 is the one I nursed the least and was probably surrounded by the most stress before and after birth!  And that is another struggle- making sure we don't forget her in the midst of A1c's and target blood sugars.  But that's another entry.

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