After your child was diagnosed after, the shock and numbness wore off and you realized that the world has continued to rotate on its axis regardless of your turmoil, did you start to read anything and everything you could on “it”? “It” being this thing, this damn thing that lay dormant for sometimes years, only rearing its head up for moments at a time but long enough for you to know that something wasn’t exactly right with your child? We can see it with their clumsiness, avoidance of eye contact, temperament...the little things that just kept flashing in the back of your head, “Something’s not right here! Stop!”. But you wait. I mean you don’t want to look like you're overreacting, right? Especially if this is your first child. So you keep your concerns to yourself, slowly adding to the list as each day passes and you realize you can’t un-notice the red flags. You know something is going on, on a gut level you know, but the fear of what it might be paralyzes your throat so the words won’t come out. And if you don’t say the words then it won’t be true. Just don’t say you know something is wrong with your baby.
The diagnosis comes in many different forms. Though I am a behavioralist and work primarily with the Autism community, I do have children with another diagnosis I work with. This was my hearts calling long before I even what having a baby entailed (and when I eventually found out I swore I would never have one!) so my foundation of understanding and compassion was there. And the knowledge that sometimes someone has something going on inside of them that makes them act or learn differently, or have other special considerations that require a lot of adult supervision. I readily got into this field knowing some of what I would need to, but you're never fully prepared. I like to think that’s where the experience piece of the puzzle comes in. And I figured I would dedicate my life to children and help them learn and grow, all the while not really thinking I would have one of my own. I did.
After a difficult first pregnancy with twins and losing them I really didn’t think I could have another child. The toll it had taken on my body was harsh, and being diabetic only magnified it. But a year later, almost to the exact date of my miscarriages, I found out I was pregnant. I have no idea what a “normal” pregnancy was because so many women had vastly different experiences, but what I do know is that I loved being pregnant. It was the craziest feeling to feel her moving inside of me, knowing that she would wake up to do gymnastics in my womb, feel her hiccup, and just to feel her inside of me.
Everything was fine with the pregnancy besides an onset of insomnia, and the delivery was painful but nothing out of the ordinary. I remember being adamant about getting her tested for diabetes, amongst other things, to make sure she was healthy. Everything was fine, she was healthy, we packed our bags and went home. Life went on as it does and before her fourth birthday, I noticed that her temper was getting really bad. During this time I was in an abusive marriage and I thought that she saw how her dad talked to me so she was imitating it. Then she started falling a lot, like all the time. She could be standing still and would fall. Little flags were popping up and I chose to keep them to myself.
One night she had a fever so my husband at the time and I took her to the doctor. During the check up, when the doctor asked, “Have you noticed anything else that concerns you?” I finally let the words out. Yes, I have. The clumsiness, slurred speech, weight loss, lack of overall coordination in daily activities, her temper, the incessant need for liquids...and I already knew what it all meant. After a few tests, they confirmed that she had Juvenile Diabetes. I remember going numb because that was my coping mechanism, and only hearing a few things the doctor was saying. “Go home, pack a bag. We will get her a bed at Stanford hopefully tonight.”
By the time we got home and got the call that Stanford had a bed for her it was near 11 pm and my daughter kept trying to climb into bed to go to sleep. I remember wrapping her in my arms and just sitting on the floor in the hallway, whispering that we are going to have a new the adventure so we are going to pack an overnight back and I need to know which stuffed animals she thought would want to go with us.
This was the first night on our journey to having a completely insulin dependent child and learning how to navigate this new world that came with a whole new set of rules. I think for the first few weeks we were on autopilot, just putting one foot in front of the other and praying we didn’t over dose her, counting every single carb she ate, breaking into cold sweats when her blood sugars would get high and making panicked calls to Stanford. Oh, remember that insomnia I had while pregnant? Well, it never went away and I am convinced that was God preparing me for 2 hours, round the clock blood sugar checks we had to do so frequently in the earlier years. And then a jerk named guilt came to take up residence in me.
I knew it was my fault, it didn’t matter what any of the doctors said. I was exhausted and could barely see straight but I could see well enough to notice the changes in my daughter after she started getting insulin. She was more stable on her feet, wasn’t falling all the time, she could run and climb, she wasn’t hungry or thirsty all the time, she slept better, she was calmer, and above all, she was happier. It’s like you could see the relief on her face that her little body was a happier place to be now. And I was happy to see all this, but it still didn’t stifle my resentment for “It”. “It” stopped her from being able to participate in many daily activities that are normal for kids like play dates. “It” was the reason why, when we would go to any damn function, people would be hovering over her telling what she “can” and “can’t” eat. “It” was her peers in school tattling on her if she ate something at a class party, even though she had already checked with me and I am fighting the urge to tell them to mind their own business. “It” is what we discuss in a closet-sized room with my daughter, myself, my ex-husband, and a doctor, every three months to “discuss” her hemoglobin A1c and then talk about her weight, caloric and carb intake, and everything else under the sun like she’s not a human sitting right there listening.
I can go on and on about all the things I blame “It” for, every little milestone and victory it has stolen from us. I would come home from these doctors in a rage, hating how the doctors treated her more like a pin cushion than a human, hating that I would have to stay up for the next 2-3 days to take around the clock blood sugar checks when the would tweak her insulin dosages, resent how other kids could do little things like having a sleepover with a friend and how if she ever did I would be up all night in terror worrying about her blood sugars, resentful of every other human who didn’t have to walk the path my child was.
A little over a year ago something switched in me. I was having a particularly difficult time and in the process of changing my whole life and seeing what in my life was or wasn’t serving me and how I can let go of some of these things. During this time we had another doctors appointment with her endocrinologist and nutritionist. Again we sat in the cramped room and listened to their recommendations and suggestions. And then it clicked; I am her mom. I am who she looks to for help. I can stop all the negative talk in these appointments that end up with her walking out of the room with her head down at 8 years old like she had done something wrong. I am her advocate. And I am not one to mess with. Momma Bear status now in full effect!
From that day on I decided that my resentment and fear was not serving me. It was not helping me become a better mother or role model, it was making me bitter. And bitter isn’t a good color for me, neither is fear. I had been changing so much in my life and it was making a lot of people upset because I was breaking out of the “role” I had played for so long, so what’s pissing a few more people off? I started to really stand up for her with doctors, school administration, teachers, parents, and her father. And, since I wasn’t ready to let go of my distaste for “It” quite yet, I made a rule. After every doctor visit, I have 2 hours to feel every single emotion I need to, to cry and scream and whatever else I have to do to get it out of me. Then my time is up. Back to your normally scheduled program of being Super Momma and kicking ass. No more crying, no more defeat. And I stop throwing out to the Universe how much I hate “It” and just let it be like wallpaper in the background while we go on to more important things. I made a point to be vocal about this to my daughter as well, to show her that there is stuff in life that we may perceive as unfair. This is also a lesson for her that fairness doesn’t mean everyone gets handed the same bag of circumstances, it means we all get what we need individually. She will say her life is unfair because she is diabetic and her parents are divorced. I say her parents had to get together to make her because she obviously has some big stuff she’s got to do in this world, and maybe just maybe she will be the person who finds the cure for diabetes. Then we have a tickle fight and remind one another of how much we love to hear the other laugh. I tell her life is hard, but God gave us all different gifts to deal with the obstacles we will face. One of the gifts is our love and our families love and how that has helped us crawl back from dark caves we thought had sealed us shut inside, just waiting for us to suffocate on the dust in our lungs and die. But we didn’t and we won’t because we are rock stars! And this is why I decided that I wanted to help families in the Special Needs community as well.
I’ve been the teacher and the parent when it comes to dealing with school districts and I know how exasperated I’ve felt having to fight for things that should just be a given (like a school nurse). Being on both sides has shown me how I can be of service to families so they won’t have to go down the same road I did, maybe they will have a gentler time of it and be able to pay it forward to the next family.
As parents, we all have our story of what seemed like the worst day of ours and our child’s lives so far. But we made it through, relatively unscathed, and came out stronger on the other side to live to fight the next battle. And it’s important to have a network of people you can lean on when you need to, and we ALL need to at one time or another. Being a parent is difficult in the most ideal of circumstances! Keeping our compassion, wits, community, and humor around us is only going to strengthen us and show our children that under no circumstance would we settle for anything but the best for them. I hope you have a wonderful weekend and be kind to yourself and others! Shine On!
Ronette Parker, Mindful ABA Applied Behavior Analysis