November 3, 2011
The things most people say changes in their lives after they have a baby are that they never get any sleep and you have to have so many things with you wherever you go!! Feedings every two hours, changing diapers, walking the hall calming them to slumber are all exhausting and constant for new parents. All the “things” you can no longer leave the house without, diapers, wipes, sippy cups, bottles, etc, etc, etc!
These fade and eventually you start to get more sleep (although it never returns to the carefree kid less days of the past) and you are leaving the diaper bag and strollers behind. The freedom of hopping in the car and taking off becomes normal and life gets easier with no more or very few sleepless nights and nothing but what you need tags along for trips to the mall or going for family night dinner at your favorite restaurant.
Then your child is diagnosed with Type 1 Diabetes and all of the sudden it feels like you have an infant all over again. A 6 year old completely self sufficient in all ways that all normal 6 year olds are (and yours is actually more independent than most) becomes like an infant to you again.
Sleepless nights return with a furry – testing before her bedtime, testing her before you lay down to try to sleep then awake to an alarm at 2am for another test. Is her blood sugar check normal and good place or is it out of whack and you are up for an hour or so “fixing” the problem. Then if you are lucky you can go back to sleep. But like a lot of parents of Type 1 Diabetic kids I find myself in a weird place at 2am – I can’t go back to sleep. My mind starts racing on the what ifs in my life, I start making lists of things to do, questioning what I am doing wrong, how I can handle the situation better, how and what I can do to be a better and stronger parent for her. To get my mind off of all these racing issues I find myself watching reruns of Law and Order on TNT and never get back to sleep, the alarm sounds and the day starts.
Travelling anywhere is the same as when we had an infant – although even more important items pack your diaper bag now. We can’t accidently leave the insulin or the blood glucose monitor and pick on up at the local store like we did on several occasions with diapers. We must have the all the life saving items always on hand just in case. Now we carry a “go bag” full of all the items to help in an event of a low, full of needles, a meter, extra strips, extra batteries, insulin, alcohol wipes and emergency contact information. It is more than any diaper bag would have thought to be but we can’t leave home without it – no more mindless hopping the car to grab a burger for dinner, or running a quick errand and grabbing the keys and going for our family. Everything we do is thought out and planned – or our child’s life could be jeopardized.
When we went home from the hospital with Allie as an infant we were a little lost, dazed and confused but we got through it and had some fun. Watching your child take a first step, hearing their first words, seeing the first tooth – all the sleepless nights and bag carrying are worth all that and more. When we went home from the hospital with Allie after her diagnosis we were completely lost, dazed and confused and we are getting by – this will NEVER end for us or her. Seeing her prick her finger 10-15 times a day, watching a needle go into her body every time she eats, the constant stress about all the activities and things going on around us, it will NEVER end for us. We will probably never get a full nights rest, we will never leave without extra baggage – is it worth it? NO QUESTION – YES – because it is necessary for our daughter to survive her disease.
Do we want to do it forever NO – I pray every day – every hour sometimes – for peace and understanding why this happened to us – I know God has his reasons and some day I will see them. As long as my lovely, sweet Allie stays healthy, lovely and sweet forever I will do whatever it takes, sleepless nights and ever present bag carrier will never be a burden for me now as a parent of child with Type 1 Diabetes.
Until there is a cure,
Jennifer
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