It has been a long time since I have posted anything. This summer has been incredibly busy, but also very fun and full of time with friends and family. I have, however, come to a new revelation in my life. This is pathetically long overdue, but... here it goes..... get ready... WE ARE NOT NORMAL! That's right after living with diabetes for four and a half years I am ready to accept the fact that we are not a normal family.
Nothing we do is easy and none of our emotions throughout the course of one day would fall into the normal realm.
We can't call a last minute babysitter so we can have dinner out with friends, we can't do overnights away from our kids, and Skyler can't do overnights away from us (yet).
When Henry gets sick (and ends up in the emergency room twice - not diabetes related). I should be able to take that in stride and focus just on him, but we are not normal. We have to consider the fact that we don't want Skyler in the emergency room exposed to all sorts of things, but we don't want to leave her with others while we are an hour away in the hospital.
When we are spending the day at the lake (which we do everyday in the summer) Skyler shouldn't have to come out while all the kids are playing to "plug back in" for a little while.
On "date night" we should be able to go for a canoe ride where we will be out of cell phone range without having an anxiety attack half way through the trip, but we are not normal! (that date will not happen again in the near future).
We should be able to go to the wedding of a friend and leave our kids to be babysat on the beach by their grandparents (out of cell phone range), but we are not normal and my husband left the wedding after an hour because we were both worried.
I don't want to come across as I am complaining about Skyler. I love her more than life itself and will take care of her forever if I must or if she wants me to (doubt it!!), but I don't love diabetes and how much it impacts our lives everyday. What upsets me more than my own selfish complaints is that Skyler has no idea the frustrations that we feel, but someday she will feel them all too and will realize that this is for the rest of her life. I pray that she will take it all in stride and learn to live her life to the fullest regardless of the abnormal circumstances in her life.
Although this sounds very negative, I am actually considering my revelation a positive thing. It is helping me to be more honest with family and friends and actually express to them that this is hard and as much as they all want to help, sometimes they can't! We have focused so hard on not letting diabetes feel like a burden that I don't think we have been totally honest with everyone on how hard this really is. All of this, of course, with the idea that we are protecting Skyler from feeling like a burden. I am realizing that this actually comes at an expense to Skyler and that no one who loves her would ever consider her a burden. I guess we just so wanted to protect her and help her to feel "normal" that we stopped being honest. I still feel very strongly that diabetes will never stop her from doing anything that I would let her do without diabetes, but I just need to be more honest with everyone about the fact that this is hard work and we are not "normal".
I took Skyler to see the movie Beezus and Ramona and there is a scene where Beezus explains to Ramona that being different is what makes her so special. I whispered to Skyler that our family must be really special.
I am hoping all you D Moms might be able to help me. How did you educate your families and friends? I have read a lot of books about diabetes, but I am wondering if there are any good books geared towards helping family members understand diabetes better.