Heather D. Nelson | 9/9/2013, 5:44 a.m.
I’ve done several articles to date about my life with a Type 1 Diabetic child. In truth, it’s been cathartic for me but I do hope it’s helping others in some way. I hope somewhere, some poor mother who is scouring the net looking for answers comes across my words and reads them and says, “YES!!!! I FEEL THIS WAY TOO….I’M NOT ALONE!!!!” If that’s been you, YAY! YAY that we found each other and YAY that I was able to use my love of writing and this AWFUL situation we are both in to somehow make a difference. But if I may shift gears a bit, I’d like to sidebar my usual awareness and education emphasis and discuss a gift my life has been given since our family began down this road.
Prior to diabetes, my life was fairly typical. I went to school, I grew up, I got married. Life happened, I grew up a little more, we had baby. Life happened, we moved across, I grew up some more, we had two more babies. With each shift in our phase in life came it’s own set of challenges and upsets. Growing pains, if you will. My husband and I had to learn more about ourselves, more about each other, and more about our place in this life and our impact in this world. We thought we were exactly where we needed to be and we were content, for the most part, with how things were going. SURE we had the usual trials as any other couple does; money stress, new baby woes, sleep deprivation, busy schedules, scrambling for date-nights, arguing over household chores, the usual. We were like any other couple. We had friends, but clung mostly to each other and our family’s and enjoyed the little bubble of life we called our own.
Life happened, diabetes came. Life happened, we moved across country. Life happened, we lived with family. Life happened, and happened, and happened, and happens still to this day….sometimes all over us. Gone are the moments to regroup and find normal before a new swing flies and we’re picking ourselves up off the floor.
The growing pains we have – even still – are ever evolving just as our lives are. It’s not terribly unlike the diabetic dance we do for our son. We check his blood sugar, adjust to the number, correct with insulin or sugar (or both…don’t ask…it happens) take a step back and a deep breath and then get back in the ring for another round. And just as we do that dance, we do the dance of life. Only now, instead of swinging wildly from one life change to another with no real focus, we are now pristinely focused. Focused on what really matters. Focused on what truly is important in life. We have been given a gift of clarity that was sorely missing before. My husband could likely argue that he already believed in the epiphany I have recently had, but I see a shift in him too. And it’s not ALL diabetes related either! It’s been a far reaching ramification of the veil being lifted in our once overly cluttered lives.
Before all this, I can recall my biggest worry in life being how involved I could be socially or in my church. Was that a bad focus, no. Was I a bad person for wanting to be involved in things, no. But I also had a lot of built-in pressure from it too. Obligation to help in areas I really didn’t want to help in. Guilt if I couldn’t do MORE for people. I would strive to have the cleanest house, the most well behaved dog, be the best at WHATEVER I could do. I prided myself in being a person that could be counted on. If I said I would do something – I WOULD DO IT! I loved to be help to people, to be involved, to be a part of something – anything. I loved being married, loved being a mommy, loved my life including all the sometimes drama that came with it.
NOW, my biggest worries are far bigger than me or my need to be socially involved. I worry for the very core of my family’s health and well-being. And it is NOT just my T1D son. He has two AMAZING little brothers. I often find my mind drifting to them and how AMAZING they are. I worry that in all the hustle and bustle of life with diabetes, that they are being pushed aside. I strive now NOT to fill my social calendar each and every Friday or Saturday, but rather to fill my time with my kids – all my kids – to be as fruitful as possible. My twins are now nearing the 2.5 year old mark. That was how old my Big Boy was when he was diagnosed. I stare at my twins now in AWE of how amazing they are. They have NEVER known a life outside of being a diabetic family. They are 2.5 and they can go get big brother’s glucometer for mommy if he’s in crisis. They too have begun asking for permission to eat their snacks…just like big brother does. They understand that big brother has his insulin bag with a sugar shack inside of it that is off limits. At 2.5 they have already grasped, on some level, that big brother’s condition is fairly important. They don’t really know why yet, but I have no doubt that they will. We have plans to teach them as they grow how to check brother’s blood sugars and such just as we have learned. We are a family and we are ALL responsible or the love and care of each other. But to watch my twins right now, you would be in complete awe with me to see them in action. One so sensitive and loving, always quick to smile and use his manners; the other always climbing, scheming, plotting, falling, breaking, messing, and otherwise causing mayhem wherever he goes. It’s amazing how much they are different and yet big brother is a beautiful melding blend in the middle of them all. In fact, we have nicknamed the trifecta Chaos, Mayhem, and Destruction. But they also LOVE each other so much. I don’t know if I would have appreciated it as much as I do now, had I not been given this gift of clarity in my life. I notice the hugs more, I notice the manners more. I appreciate more when they play well together and don’t bicker or fight. I love the expressions on their faces and when they laugh it can instantly change my day. TO BE CLEAR – I’m sure every parent feels this way about their children…or at least I hope they do. But for me, I see it more now.
I find myself detaching from the things in life that are unnecessary burdens, and clinging more to the things in the world that really, truly, to the core of my soul….matter. So what does that mean, well in some areas is means appreciating what has been around me all along. The people in my life who are here, when needed, to help hold my arms up when I get weary….and believe me, I. Get. Weary. Have three small children is exhausting on a GOOD day, but add in Type 1 Diabetes (or any special condition for that matter) and the word exhausting begin to lose all meaning as it pales in comparison to the description of the level of sleep you can function on. These days exhausting doesn’t mean lack of sleep, for us it’s the mental exhaustion. And now, just as quick as I can say, “man today really whipped me”, I can almost guarantee a phone call….an email….a spontaneous mommy group coming over….a hug at church….an offer of prayer. At every turn of our journey, though I didn’t see it before, we’ve had beautiful souls placed in our lives to get us thru that spot we were in. If it wasn’t the experienced diabetic moms who came along beside me when I was a newbie and overwhelmed…it was the family members who gave much personal sacrifice to help support us. And the latest one right now is the church family who has been bold and brave and willing to not only LEARN about my sons condition, but offer to be trained so that he may attend pre-school! GOD BLESS THEM for giving me a brief respite and an opportunity to know my son will survive outside of my watchful gaze. But there is more…there are now friends who know about our life and are not afraid to just BE FRIENDS. Do they know everything about my sons condition, no. Do they need to, no. But they know me. They befriended ME and are there when I get weary. It’s not much really, but it doesn’t NEED to be much. It’s a cup of coffee (okay, a BIG cup of coffee and a side of Tea and chocolate) delivered to the hospital a few weeks ago when we were stuck overnight with some crazy BGs. It was the friends scrambling their own schedules to watch my other two kids so hubby could work. It was the hugs…and sometimes tears…shed with me over my worry and anxiety. It’s the LAUGHTER of an impromptu playgroup that lets me have adult conversation. It’s the childcare provided by a loving church environment so I can begin to worship again…and serve. These things would be balm for the heart of any mothers, but having a child with a special medical condition elevates these simple things to such a higher calling. No longer is it “oh I need some MOMMY time to just recharge my batteries”. Now it’s, “my heart is breaking, again, and I need someone to just love on me for a second and let me grieve so I can jump back in the ring and do this all over again”. No longer do I fight for a date once a week with my hubby, now we try to just be in the moment for the 1 hour we get each night when we wrestle them all into bed, before we collapse ourselves and prepare for the nightly wake-up calls. That’s the clarity – that’s the focus. The good friend who will cry with you, and then HELP YOU FIND YOUR BOOTSTRAPS, now that is a good soul right there.
Has it been all roses and rainbows, no. Not even close. The painful part of pristine clarity, is the stripping away of things you once held dear that your life no longer has room for. That is not always a pretty process. Friendships I once had, fell away. Some family relationships even have changed from what I hoped they would be. Does it hurt, SURE. Do I like it, NO! But do I embrace it, yes…okay, reluctantly now but the answer is still yes. Lets be real, NO ONE likes to see your life change directions and you are forced down a path you didn’t want to go down and you turn to see if your friends are with you only to notice they went the opposite way. But if given a choice, would any of us embrace a life with a critically ill child? Don’t be embarrassed, be honest. It’s okay, I wouldn’t have either. I would NEVER have willingly said, “SURE GOD, SIGN ME UP to NEVER SLEEP AGAIN…oh yeah and give me a BIG HEAPING DOSE of worry that my child may not wake up every morning, that’d be swell!” So while it does hurt, sometimes deeply depending on the relationship involved, I do understand. I understand why my son’s condition would be scary. We are overwhelmed to and we are used to it. We don’t expect others to just jump in and be 100% okay with something that we ourselves are NOT OKAY WITH! However, we also don’t really have time for drama. We don’t have time to waste on relationships that are one-sided. I hold no room in my heart or my mind for obligation, guilt, or a false-sense of intention. We have little patience for toxic personalities and we certainly won’t be spending what precious happy family time we have in environments that don’t fill our lives with true joy and meaning. We want our life to be as balanced and healthy and happy as it can be, in every sense of the word. So we cling mightily to our faith and hold our marriage and our children close. We embrace the little joys when we can because frankly we can’t AFFORD to wait for BIG moments as they are few and far between. We turn our backs on relationships that bring us constant drama and pain, because we know that our life now will hold TRUE pain and drama in its purest form. We will do our best to uphold our family values and welcome those into our little circle who want to do the same. We will be sad, at times, to see some connections fall away. And at other times we will gladly show some distractions the door and applaud when they are free from our life.
You can’t find a clear spot in your life if you are too focused on the chaos. You can’t hear the music if your life is full of noise. Our lives are now filled without our choosing, to the brim at times, with chaos and noise thanks to diabetes. So many URGENT moments, doctor visits, money stresses, dietary woes, and the list goes on and on. There is not one single stinking piece of our life that is not now and forever embroiled with caring and raising a diabetic child. So don’t mind us if we begin to peel away what we can to carve out for ourselves a little clear spot. A place to rest, a moment to hear the music. We do not turn our backs on you, or your hobby, or something you hold dear, to be hateful. We are trying, desperately, to survive. We welcome you to embrace us in our new normal if you can…we give you grace to depart if you can’t and we hope you use that time to hug your own healthy children and say a prayer that they remain so. We will try, truly, to remain connected to the people and things in our lives that we once before held dear. But know this. We need a bit of grace too. We are not perfect. We have our selfish moments. We didn’t choose this for ourselves, and we certainly didn’t choose this for our son. We are navigating murky waters, without a map, and with no end in sight. We didn’t sign up to be parents of a special needs child….but we ARE parents of one nonetheless. And each day, we must wake up and hold our breath as we hope to find our son sleeping, and not in a coma. You just don’t have that thought in your head each day, and then shake it off and behave as if the world is normal again. We so, however, say a grateful prayer for another night survived…guzzle a bit more coffee….adjust constantly, do the dance, step back and then jump in the ring again. Hold MIGHTLY to the promises you are given by God for they are the ones you can count on, and as for the rest of the world you roll up your sleeves, square your shoulders, prepare to take the next punch and say, BRING IT ON!
ps - Don’t Forget – Jackson’s Rockstars are walking for a CURE FOR DIABETES this year for the JDRF Walk For The Cure happening in Dallas on September 23rd. If you want follow along you can, I’ll write about it, but I’d sure appreciate you helping us find a cure. Just click here to donate http://www2.jdrf.org/goto/JacksonsRockstars
Heather D. Nelson – Author-for-hire
God Had Other Plans – Keeping Faith thru Infertility and Pregnancy Loss
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