The day we left the hospital was October 29th 2009. Before we packed all our bags, including two grocery bags full of medical supplies, we had one last visitor. It was the dietitian. She brought us a print out with all the carb counts for the most common Halloween candy. Halloween was just two days away and we needed a plan. Always having a plan will become part of our "new normal". She suggested that Ben could have some candy but it needed to be worked into his very strict diet plan. This was going to be tricky because if he ate 15 carbs of candy we would have to use those carbs as a replacement for others. This was going to be our first real Type 1 test.
Leaving the hospital felt very similar to when we left the hospital with our first son. At the time I couldn't believe they were letting us take our baby home. Didn't they know how scared and unprepared I felt to take care of our brand new baby, who I truly loved with all my heart. I felt that same fear again, but magnified! Would Jeff and I be able to manage this disease. And would we be able to do it without neglecting the needs of our other two sons. Only time would tell.
From the hospital we went straight home. I took a long needed shower and then we settled in. We cleaned out one of our kitchen cabinets and deemed that our diabetes cabinet. Then I immediately started to plan what Ben's next meal would be. I searched through the pantry reading all the nutrition labels, quickly realizing I was going to need to rework our typical menus. Once it was decided what Ben's next snack would be, we waited. I remember just watching him play with his legos, afraid to take my eyes off him, looking for some sign of hypoglycemia.
Soon his brothers returned home from school. They were thrilled to see Ben again. They had spent four days worrying and not understanding what really had happened. We sat them down and gave them our own version of Diabetes 101 training. Luckily, they were both great students. I explained that this diagnosis was going to change things. And we, as a family, needed to do whatever we could to help Ben live a long healthy life. And that included changing what we stock in our pantry. Both these boys have the biggest hearts and were eager and willing to do their part. To this day, neither one of them have ever complained about these changes.
At some point we started talking about Halloween. I had always been the mom that let the boys eat as much candy as they wanted. We never really set too many restrictions on it. I always figured that if they ate too much candy they would end up with a belly ache. And in the end, that would be god's punishment. But things had changed, and now that Jeff and I had to be Ben's pancreas we needed to be more proactive. I explained that Ben could have some candy, but I thought the easiest thing to do would be to get rid of the candy the day after. I suggested that I would trade the candy for a trip to the Target toy section. I did not want them to feel diabetes had stolen Halloween away. If may have taken the candy away but it replaced it with something even better. We call this one of the benefits of being part of the very exclusive T1 club. (Membership has it's privileges!) Cole then added that we could give all the candy to his teacher at school because her nephew was serving in Iraq and she was putting together a care package for him. I thought that plan was brilliant! So that is what we did.
The night of Halloween, Jeff stayed home to pass out candy and I, armed with my glucagon kit, test kit and juice boxes, walked the neighborhood with the boys. This was truly a harrowing experience for me. (I just double checked the meaning of harrowing: extremely disturbing or distressing; grievous. And indeed, that is the proper adjective.) I was constantly worried about the amount of walking Ben was doing and when that level of exercise would cause a low. And it seemed that every two minutes I would lose sight of Ben, who was running from house to house and loving he was no longer stuck in a hospital bed. Our neighborhood has no streetlights, so in the pitch dark once you lost sight of him it was difficult to find him again. Not knowing exactly where he was, I would feel a sense of panic over take me. I was convinced he had passed out somewhere and was lying in some one's yard in the dark. Eventually, I would find him. But then two minutes later I would lose him again and then back comes the panic! We have gone through three Halloweens now, and honestly, I will be relieved when he finally out grows this holiday.
Towards the end of the night, after I have relocated my lost son for approximately the hundredth time, Ben stops and tells me he is sad. Lord knows he has a thousand reasons to be sad, but I look into his sweet young face and ask him, "Why?" He says, "I don't want to give all my candy away. I want to save some for when the doctor's find a cure for me." As if my heart weren't already shattered into pieces, my heart breaks a little more, but I promise him, "When that time comes I will buy you bags and bags of candy, so don't worry about that!" And at that very moment I make a promise to myself to do everything I can to help that day come during Ben's lifetime. And when that day comes I am going to turn our house into Willy Wonka's Chocolate Factory! I will hang some lickable wallpaper and build a chocolate river that will flow right through our kitchen. Ben and his brothers will be able to eat as much candy as they want (without a single finger prick, insulin calculation or needle). And hopefully god will spare them his punishment, and there will be no belly aches that day!
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