The Good, the Bad, and the Ugly
AKA: Dimple Grins, Night Sweats, and Temper Tantrums
Katie has discovered her hands! Looking through a babies eyes is so amazing. How is it that something so simple as looking at one’s hands, turning them over, back and forth, can be so entertaining? She hasn’t quite figured out what to do with them yet, but she gets them to her mouth every once in a while and giggles and coos because I get so excited saying “good job!”. I may be using positive reinforcement in excess because I am scared of her going down the same road as Andy. I know their specific genetic mutation is associated with developmental delays so I have a checklist of developmental milestones that I’m checking off as she hits them. I don’t want to push her too early and become the overprotective mom, but I don’t want to miss any opportunities to help her move forward either.
I am enjoying Katie too. I love seeing her grins and those beautiful dimples on her cheeks. She loves dancing to music, playing patty cake, and reaching out for her swinging toys in her bouncy seat. She recognizes me, daddy, and her big brother Andy. She loves it when Andy gives her kisses and hugs. Of course, he has to be the typical sibling and annoy her with pokes and jabs too, but that’s to be expected. She is slowly becoming a wonderful part of our little family and blessing us with her dimply grins more and more every day.
As any parent of a diabetic child knows, one of the greatest fears is the nighttime low blood sugar. It is one of the scariest feelings because you can’t be too sure they are having a low and if they are, how long it has been low. The longer they are low, the greater the chance of seizures or brain damage. Katie and Andy are even more unpredictable because I think they have inherited my overactive sweat glands. I have always lived with sweaty, clammy feet and hands. It’s something I’ve just come to accept as normal for me. The only problem with this “normal” bodily function is that with a diabetic, it can be decieving. My children can’t communicate to me when they are feeling “low”. Andy because he is developmentally delayed and Katie because she is only 3 months old. I have been able to decipher Andy’s low blood sugar signs during the day time because he will lay on the floor and cry a certain type of cry. It’s hard to describe, kind of a whiny cry, and much different from his temper tantrum, “I want something” cry. He is even starting to sometimes tell me he needs sugar by asking for juice. He has done this a few times just before having a drop in blood sugar when he is awake.
That being said, the lows at night are harder to detect. For my kids, with clammy hands and feet, it’s even harder. Mainly because one of the “signs” of a low blood sugar in diabetics is that they become sweaty and clammy when they go low. So imagine Dan’s panic that set in when he checked on Andy last night and he was sweating all over and felt clammy. He immediately checked his blood sugar and he was fine at 84. I have done the same thing with Katie too. She will often times feel clammy and be fussy so I will check her blood sugar and she will be fine. It’s one of those daily things we have to deal with as parents of diabetic babies. We have to constantly be their brain. We have to try to predict if they are low or high depending on the way their bodies are acting or the way they are behaving. That brings me to the Ugly of it all.
“I love my child, I love my child, I love my child.” I find myself repeating these words over and over sometimes when Andy is throwing yet another of his temper tantrums. We thought we were going to be the lucky parents who didn’t have to deal with this. Andy was a pretty easy baby except for a classic case of colic from about six weeks to 3 months old (although it may have been high blood sugars that we were unaware of at the time). He was always very happy. Smiling, laughing, playing, and very independent in nature. We made it all the way to 3 years old before we started seeing the temper tantrums. He never had the terrible twos. Instead, we have the “throw-down threes” and the “frustrating fours”. I called it the throw-down threes because he was constantly throwing himself on the floor and screaming. Now, he has resorted to the frustrating, angry scream.
Being delayed in his speech, I believe, has caused him to get very frustrated so often. While Andy is quite capable of speech and has a very wide vocabulary, he has trouble putting it together. Like a psychologist recently told me, his speech is on the level of a 2 year old, so his behavior is on that level too. It’s so hard to classify Andy’s disability. He is not Autistic, but he does have certain Autistic tendencies. Andy knows and can spell his first name, but doesn’t know how old he is. He can count all the way to 20, but can’t hold up his fingers to show you the meaning of a number. Lately, he has been coming home from preschool and having total meltdowns. I have a feeling there are many factors leading to these meltdowns. He has a new little sister who can cry to get attention, but when he cries, he is ignored. He has a new classroom with new teachers and new expectations. We are trying to potty train him still (yes, he is still in pull-ups at 4!). We are trying to teach him how to dress and undress himself. He is still learning how to eat properly with utensils at the table without dumping his food on the table. Basically, we are now expecting him to grow up and he is just not ready, so the only way he knows how to tell us that is by falling down on the floor, screaming “no, no, no” repeatedly over and over again.
I know that being a parent is not easy. I never had any illusions of every day being all play and wonderful smiles. But, one thing you never understand until you are a parent is that all of the good, the bad, and the ugly come in one little package. It is not neatly wrapped under your tree for Christmas. It’s messy. It’s hard. It’s frustrating. But it is also wonderful. To know that you are the one who keeps this child alive by giving them food and love, and, for some parents, life sustaining medicine, is a wonderful burden that we shoulder happily every minute of every day of their little lives. God only gives them to us for such a short time in respect to their (hopefully) long lives. These days while they are young, may be some of the most frustrating and scary days, but they will be worth it in the future. Our children may never fully understand all that we had to do to keep them alive during these years, but when Andy grows into a young man and Katie grows into a young woman, my hope is that they will lead healthy, full lives. That will be the best gift they can give