Hi. I’m Heather and I’m the mother of a Type 1 Diabetic. I say that as a pseud- confessional and it sounds like the beginning of an anonymous group meeting. If you too are a parent of a T1D kid, you understand the mass amounts of subtext behind that statement and you all say, "hi Heather". However, the majority of people I come across have never been touched by Type 1 Diabetes. In fact, most of them only know Diabetes in its other form because of some relative who acquired it as an adult. I’ll admit I myself was in that category until about two years ago.
My sons are all vibrant, active, social children and we are a family that is always on the go. My T1D son wears his insulin pump in a pack around his waist 24/7 so it’s not at all uncommon for total strangers to comment on it, ask about it, and express curiosity about his condition. And usually that’s when the questions come around and their lack of awareness begins to show. But even within my own network…friends and family who know we have Type 1 Diabetes in our lives….don’t often understand the ramifications of how it affects us or frankly…
WHAT’S WITH ALL THE WORRY?
As I sit and type this my kiddos are tucked away in bed after another busy Sunday. I will rise, up and early, in the morning with the two new puppies (i seriously thought I could handle TWO puppies....why, WHY), drink my coffee while watching the rain fall and prepare myself mentally for what the day will bring. Those quiet early morning minutes are my sanctuary in life. I have a peaceful moment to reflect, let my mind wander, and enjoy my coffee while it’s still hot. Perhaps I consider the day’s to-do-list, or perhaps I let my mind drift into planning some project. But that moment, those few precious stolen minutes, are often all I get. Once the first child’s eyes are open, the real work begins and the impact of T1D kicks in.
Children rise and its diaper changes for the twins, but then we check big guy. Did his bladder hold out thru the night or did he wet the bed. If he wet the bed it’s not only a load of laundry, it’s a pep talk for him to off-set his embarrassment and an indicator that his sugar was more unstable than we realized. So we strip the sheets, clean him and change the clothes, explain how accidents happen, check his blood sugar and either dose him some insulin or feed him some quick sugar as needed. Hubby and I often have a sideline discussion of what could be the culprit of instability. I then toss the laundry in the wash and the diapers in the trash. Hubby gets ready for work and I begin breakfast.
In our house we don’t do cereal…it’s a carb loaded bowl of quick nothing for my kids and we all need some hefty protein so it’s eggs, toast, milk, vitamins and a quick swig of cold coffee for me as I cook. I check the blood sugar again and ring the bell for BREAKFAST TIME as the herd gathers around the table. Typically all before 8am. And that is a fairly good intro into my routine day. Before 8am, I’ve checked blood sugar twice, dosed at least once, and dealt with the fall out of the night before and what T1D has done to my child. Oh and THANKS for the lovely addition of trying to Potty Train a child who can only really half control his bladder thanks to the unstable sugar levels. S W E L L ……
Have I mentioned I hate Type 1 Diabetes? Because really, sometimes it can suck it!
But here’s the real kicker, the real sucker punch, to what diabetes does to our day to day lives. It layers it in a veil of fear.
Now it’s worth mentioning that I come from a long and lustrous line of what my family calls, “worry warts” we fret and worry and stress and if there is nothing to worry about we pre-worry about things that MIGHT happen. It’s a skill people. I can worry when there is not really much to worry about and I can FIND things to stress over when I feel my plate is too empty. But to be truthful, my days of frivolity in this hobby are over as with children comes a heap of natural and legitimate worries to fill your mind.
Are they growing enough, are they growing to fast? Am I feeding them properly, is their diet as organic as it should be? Are they developmentally on track or is there soft signs of some condition? Are they sick, are they happy? Do they play well with others, are they capable of independent entertainment? Am I a good mother…am I adequate…am I enough? Take any mother, of any number of children, on any given day of the week, and ask her what she is worried about and you will get a nice list. And lets face it, GOOGLE doesn’t do us any favors! Good ol’ Dr. Google can find just about anything you need to back up any fear you have be it rational or irrational. But we live in a scary world and raising babies is scary work at times. Add to that diabetes and well, I’m often a powder keg of anxiety.
Lets start with the big one….THE BIG ONE….my son could die.
Take a minute…take that in. My sweet 3 year old red headed ball of curiosity could die. Diabetes makes his sugar levels so unstable, and he’s prone to middle of the night lows. He wears an insulin pump that gives him a drip of insulin every hour of the day and night and should something internally happen with his body, and his sugar drops too low, and then the pump drips in the insulin, and we don’t catch it and he doesn’t wake up….he could die. And before you roll your eyes thinking I'm being dramatic let me assure you. This is not sensationalized, or irrational or even artistically exaggerated.
At one point the JDRF (Juvenile Diabetic Research Fund) stated that 1 in 20 people with Type 1 Diabetes will die from low blood sugar crisis. This is a real, and relevant, and valid fear. Am I a good mother…am I adequate…am I enough? My husband and I spend a lot of time in team with our doctors to perfect the pump formulas for the middle of the night. My husband often leads the night shift on nights where his sugar is unstable and yes, at times, that means setting an alarm for every 2 hours and getting up and checking on him and adjusting his levels. That sainted man of mine then goes to work the next day and I take the day shift while caring for kids.
WE HAVE THIS LIFE and we do it gladly so our son can be healthy and have HIS life. But the fear…the fear is there. Am I a good mother…am I adequate…am I enough?
But okay, so 1 in 20 can die…but that means 95% WON’T die right, so my son is probably fine!!?? Right….well maybe not. How about some of these for you:
Cardiovascular Disease – my kid could have a heart attack
Nephropathy – my kid could end up in end stage kidney failure
Neuropathy – my kid could have permanent nerve damage
Hypoglycemia – low blood sugars…see above threat of imminent death
Retinopathy – my kid could go blind
These are not random fears of a panicky “worry wart” mother. GOOGLE IT (haha see what I did there)…these are real, relevant, valid, and VERY present realities that I live with. The more my son has hypoglycemic episodes, the more his body becomes unaware of them and thus it reduces his ability to warn us. It’s called Hypoglycemic Unawareness. So I feel compelled now to watch him like a hawk to stave off that inevitability as long as I can for him.
Every time he has an uncontrollable high sugar due to illness or growth spurt or hidden food, his risk for ketoacidosis increases and thus damage to his eyes, kidneys, heart, and more. I know at some point it will happen so I feel NOW more than ever that we need to really lock things down. To protect him…to buy him some time.
If I’m being soul-baringly honest with you, and I really don’t know how to be any other way, it’s exhausting at times how much I worry about my children. But gone are the days when I worried if I let them color enough, or too much, or fed them enough veggies, or put sunscreen on them thick enough. Am I a good mother…am I adequate…am I enough? Now, when I really get anxious...when I’ve had a rough day or a poor night’s sleep and my worry gets the better of me…I worry my child will die. That he’ll be sleeping in his bed, and have a crisis, and not be able to get to us or know what to do, and we’ll be sleeping in our bed clueless. I worry that my child will have an ear infection, and go lay down for his nap only to wake up 2 hours later in full blow ketoacidosis and end up in the ICU on IV meds to try and stave of organ failure until he can stabilize.
The fear is suffocating and keeps me hyper aware of him at all times. His color…his behavior…his mood, his appetite, his laughter, his play. No one knows my child like I do…no one. And surely no one could maintain such a level of care for him, like I do, so as to keep him healthy and stable. Right?! I mean, I can tell from the tone of his cries if he’s really upset or if he’s emotionally fragile because of a low blood sugar drop. I can take one look at the color of his cheeks and tell you if he’s low and unaware of it. I can tell by his defiance if it’s a real toddler tantrum or a blood sugar spike causing him to become aggressive, and at times mommy-deaf. And surely, if I am diligent enough he can live a long healthy life…right here with me…and we’ll never have to deal with any of those complications and we’ll all be happy for ever after.
Therein lies the rub….as they say.
You see…fear is utterly useless in the care and raising of children. FEAR is just an emotion, a hormone, whatever you want to call it. An INSTINCT if you will that something is amiss. But if left unchecked, fear becomes a suffocating void of paralytic proportion that disables you from taking action. You see….for me….my son is not a diabetic. He’s a ROCKSTAR and an awesome amazing kid. Smart, chatty, social, musical, physical, wonderous and perfect and just happens to be saddled with diabetes too. My job, as a mommy, is to train and teach and discipline and encourage him in every way…and that includes the management of his condition.
So do I want my kid to be a shut-in who never leaves home? No. Do I want him to live his life in fear of his condition so that he becomes too fearful to live his life to his full potential? NO! I want him to thrive in life and conquer his demons and raise a flag in this world. I want him to become the pillar in life that he is supposed to be and shine as a beacon of what Godly men should be. Faithful, bold, strong, and able to take the cards he is dealt and run the table of life with them. So how do I do that? Am I a good mother…am I adequate…am I enough?
How do I set aside my own innate nature to worry, and the heaping amounts of viable data that backs up my fear, and instill a sense of confidence and foundational faith in my son so that he lives to his full potential? Well for one….I watch him. Big Guy is so bold and courageous. He is curious and full of life. His imagination is boggling, and his sweet nature comes out at amazing times. Willful, powerful, and absolutely fearless. If I just take a moment to watch him, I could learn a thing or two.
He doesn’t know about all these things diabetes could do to his body. Not yet. He LOVES going to the doctor’s and seeing all his friends. He thinks his pump is just part of who he is. He doesn’t feel less, or weird, or scared and if MY THREE YEAR OLD can be that way, perhaps his old mama can dust off a bit of her courage too.
I also, lean heavily on my husband. Talk about quiet strength. It often annoys the crap out of me how calm that man can be at any given time. But I also love that about him. He’s utterly unruffled by the events in life that have at times left me reeling. When diabetes throws us a curve ball, he just takes a step back and evaluates and then trudges forward again…constant as ever. And when I fall apart he puts his arm around me and helps me trudge forward too. I could stand to take a page outta his book too when it comes to living a life that is LESS fearful.
But in truth, I pray….a l o t. I pray to God to make me the best mother I can be. I pray for protection over my kids, I pray for good behavior and sometimes I pray for naptime! I pray they eat their veggies, I pray they make good friends, I pray they see how much I love them, and not how much I’m exhausted and ready to run for the hills screaming some days. I pray.
And I hope that somewhere in all that prayer my true message to God gets thru and he hears me loudly proclaim: Thank you thank you thank you oh Lord for these children you have given me. I am floored, daily, by the blessings you have entrusted me with and I ask only that you fill the gap in what I am, and what I should be, and what I could be. Cause Lord, I CAN NOT DO THIS WITHOUT YOU! I can’t make these boys the men they should be on my own, nor can I make diabetes go away, so you Lord must come down daily and lay your hands on us all and help in a real and true way. Give us enough, give us grace, bless us more than we can see, and protect us more than we need to know. Calm the tempers, grow the patience, thrive the faith, and double the laughter. Lord help our family be always a strong unit of love…who can help each other….even when facing down the rigors of diabetes. BECAUSE WITH YOU, OH LORD, WE HAVE THE STRENGTH AND COURAGE EVERY DAY TO ROLL UP OUR SLEEVES AND SAY ‘BRING IT ON’!