This week was hard. I’m not a big fan of Easter anymore because it was Easter 4 years ago that we were at Dornbeckers sitting with the new knowledge that Ocean had type one diabetes. Sitting with the trauma of what had just happened in the PICU - sitting with the almost visceral knowledge that we almost lost O. I took pictures that day of him opening Easter gifts from Grammy and was more than a little disturbed by how thin he was and seeing the 50 different bruses covering his body from when they were trying to get a pick line in made me realize I had already tried to block out the trauma. . The fear still sits in my heart - I don’t think it’s ever gone away - it hasn’t in four years. It will consume you if you let it - and it has consumed me at different times over this diabetic journey. But I’m learning to let go. Or maybe I am just at the point where I want to learn to let go. . Fear is such a powerful beast. You all now know what it’s like to live with fear everyday. With this crisis - this global pandemic - this, yes, trauma. Maybe you understand a bit more what’s it’s like to live day in and day out with a monster over your head. Although, I wish you all didn’t have to live in fear right now - like we have for the last 4 years - I am sure it will change you for the better as it has changed me. . Let it change you friends.
War zone
Scott and I have been talking a lot lately about how our life is like a war zone. How living with type one diabetes is like being in battle - there’s no predicting what will happen. Every decision you make is life or death. Every second counts. No two days are ever the same and someone is always bleeding. We have definitely been in the trenches lately. If you watch my stories you know our house got hit with the flu. And if you know type one diabetes, you know that the flu and insulin don’t mix. Why? Because you dose the insulin based on how many carbs eaten and when you throw up that foo, you end up with insulin on board and no carbs. And that equals a dead kid. It was two weeks of hell and we are wiped - we had to give an emergency shot of glucagon and then go to ER for fluids and to get stabilized. Came back home, barely holding it together to realize that Oceans sugar storage was completely depleted due to the glucagon and persistent low blood sugars. What does that mean? It means that he was requiring almost no insulin coverage for carbs (but still needed some) And it means that any insulin he did get (even a single drop) made his blood glucose plummet at a dangerous pace. So dangerous that we ended up having to call an ambulance because his blood was crashing so fast. And with no sugar storage the emergency glucagon kit would not work. I know that’s all a bunch of diabetes information that probably doesn’t make sense but let’s just say it was scary. Like your dripping sweat from your pits to your belly scary. Like you can’t stop your hands from shaking scary. Like there’s a gaping hole in your chest filled with hot lava scary. There’s definitely some ptsd in the house. And I guess I just needed a little time away from the pressure of IG. I hope you guys missed me a little bit and I can’t thank you enough for all the support I received through my stories while Ocean was sick. Man, that was one hell of a Christmas. 🤮🤢
Traditions
We accidentally started a tradition the weekend I had Ocean. I actually don’t know if it was a weekend - I just know it lasted three days and ended in a c-section and some very lasting trauma for both Scott and I and actually, I now believe, Ocean.
Scott brought along a collection of Carl Banks’ (his fav) Donald Duck stories. He had bought it for Ocean once we got pregnant - always having had a love for comics he want to be sure to have something in our library that was a little less violent than Predator and Tales of the Zombie. 🧟♂️ We were super hopeful and excited when settling in at the hospital, even though my blood pressure was high enough to require an induction. Sitting there as they stared a Pitocin drip, we began talking about our little bug and what we wanted him to know about our pregnancy journey. I said, “let’s each write her (cuz I thought I was having a girl 🤣) a letter.” So, having no paper, we got out the beautiful new hardbound book and told him all about the first nine months of his life. Within a few hours I was out of my mind with labor - Pitocin contractions are no joke, yo. As the days passed Scott started to get scared and ya know what he did? He kept writing in that book. Probably mostly as a distraction but so began our tradition. Hundreds of books in our personal collection have letters to Ocean including things like our hopes and dreams for him, stories from our day to day life, memories from the years before him, thoughts about life and yes, even the pursuit of happiness. Scott writes almost daily. And with his permission I’ve decided I must share some of his wisdom with you. Although this turned out so long that you’ll have to wait till tomorrow.
Dreams and Love
I dreamt of having a family someday as a child. Not necessarily a big one but I dreamed of falling in love, building a life together, being a mom. Once I married my love the dream of being a mom became even more powerful. I started imagining what our life would be like. The kind of mother I would be - how we would spend our days. The three of us carrying on with laughter and joy - our love being enough to carry us through. I had a million ideas on how to be the best mom - and a million plans to have the most fun. I would simultaneously nurture my own passions, while being an extraordinary mother and a phenomenal wife. 😱 I seriously thought this was possible - even more so once I married Scott and life was a fairy tail. Fast forward to the week from hell that started with Ocean having his scariest low ever and ended with me turning into a monster on him today when he was being a normal little (but loud) boy while daddy was trying to nap. There’s a pit in my heart where my dreams used to be. Haha that’s kind of dramatic but still it’s kinda true. I guess I’m glad I didn’t know how hard things would be - it may have scared me away. And even though this life isn’t anything like what I imagined for myself the love I always wanted is there and you know what? Its enough.
On MDI’s and Being Seen
Ocean’s type one diabetes is not curable and requires MDI’s (multiple daily injections) and round the clock blood checks to keep him alive. One of the most common questions I am asked is if the shots bother him. Of course they do. It’s a needle. It sucks. There’s no way around it. Ocean spent the first 3 years of his diabetes rarely expressing any anger about his shots and finger pokes. Usually not giving more than a wince unless I hit a blood vessel. Although he was only ever willing to let me put a shot in his arm. He hated it in his thigh and would scream if I tried to put it in his upper glute or stomach. After three years of micro trauma in his triceps the insulin would no longer absorb so we were forced to work with him to feel comfortable with those other areas of his body. We starting using a mirror so he could see the area being poked - he looks at the skin afterwards and makes sure it’s ok. Usually it is. Sometimes it’s not. Which means it hurt a bit more than usual and he just needs to express it. I spent the first 2 years after Oceans diagnosis with my heart closed, my emotions on lockdown - just trying to survive. Trying not to express anything because if I started I didn’t think I could stop. And the things I wanted to express were so powerful and so painful that I just put everything in a box. It was too much for me to hold - to look at. But now I am trying. I want to make sure Ocean is being seen. Instead of pretending I didn’t just give him a shot, I now look him in the eye, ask him if it hurt and give him the chance to express himself if he needs to. Hopefully if I unbox my stuff he will see that it’s ok to live authentically and express both the good and the bad stuff. And it will make this whole diabetes thing a bit easier to handle. This was a long ramble all to celebrate that Ocean let me put a shot in his stomach today. Small victories folks.
Life and Macramé
Here it is - the custom I’ve been working on for months. A 123inch Table Runner! Holy crap it was sloooow going and I had to take many breaks and do mindless making (knotting things I’ve made a million times) to have the patience to continue. It really made me grow and taught me many things about the art of macrame but also about what I want my business to look like and where I want to spend my time. Most of all it forced me to again learn about patience. I have never unknotted a piece so much - I’ve always loved how macrame mimics life. The winding road we travel - two steps forward, one step back - and the patience it takes to unknot your progress - to look at yourself or your piece and say, that needs more work. I’ve been so angry lately. It’s consuming me. I need work. I think it’s part of the reason why I had such a hard time with this table runner. I find that when I’m struggling through my life - my custom piece struggles right along with me. I hoped that when mercury went back to normal my anger would leave. But its still an ever present weight in my chest. I’m so angry at what diabetes has taken from us that it’s blocking my happiness. The process of grief is strange. I keep thinking I’m good and then it hits me again. There is no end to Ocean’s diabetes so there is no end to this life for us and I am still grieving that. Sometimes I can hold my anger in one hand and my happiness in the other. Sometimes i can be joyful at the same time that I am sad. But sometimes the anger bubbles over and pushes away all the joy. And all I’m left with is fucking fury.
So I just wait it out. Or more honestly run it out 🏃♀️ - my knees are killing me. The happiness will come back - it always does. And I find that if I let myself be angry for a time - however long that is - eventually it makes some room for happiness again. What was I talking about? Oh ya, a big ass table runner. Finally done and in her new home. It was hard. But was worth it. Just like life.
Karma is a fantastic bitch
A few weeks ago I noticed we were down to our last extra bottles of insulin. Our insurance covers Oceans’s basic insulin needs but does not allow for spoilage or breakage. Since I am human - shit happens and we up needing a few extra bottles a year. This time around I decided to look into the diabetic buying/swapping sites on Facebook. Bad idea. Long story short I got scammed and ended up without any insulin and out about 100 bucks. Here’s where it gets interesting. I was quite furious and to be honest once again devastated by the human race. How could someone prey on a child’s weaknesses like that? My blood was boiling while my heart was breaking. That weekend I had my stall up at the Saturday market here in my hometown. About an hour before the end of the day an older gentleman came up to me with a gentle smile on his face and handed me a small flowered coin purse. He said, ‘this was in your booth for you.’ I looked inside and there was a hundred buckspeaking up at me. As I gasped and blubbered he said, ‘you’ve just got to accept the good things that come your way,’ and then proceeded to tell me about the hundred dollar man. If you are a local @insalem have you heard of this saintly gentleman? He goes around town hiding these hundred dollar bills of joy - in a young mommas diaper bags, the bottom of a food bank box, a hard working diabetic momma who wanted to give up on the works - yeah in her macrame booth too. I’m pretty sure the sweet man that handed me the coin purse was the hundred dollar man. Have another other folks @insalem met this fella? Scott and I talked a long time that evening about how God, the gods, the universe, and even our fellow humans seem to keep taking care of us. They give back and help us heal a bit when we’ve been kicked in the gut. They help you keep going on this crazy fucking ride that we can’t jump off of.
Karma is a fantastic bitch.
1:05am thoughts on perfectionism
I’ve been trying to figure out why I am instantly defensive when Scott asks me about Ocean‘s blood. I have to force myself to push down the rise of anxiety that makes me want to snap “I got it.” It’s been three years and I’ve noticed some patterns and definitely don’t know much but I think it might have something to do with the some deeply ingrained perfectionism - although I truly hate to admit that. In fact, I always prided myself for being ok with not being perfect. Ha! What a joke? When I am in control of Ocean’s blood, I can choose what I put into the phone and what is recorded down permanently in our records. Once I tell Scott where oceans blood sugar is at and how many times I’ve checked him and what he’s eaten and how many carbs I think he’s had and how many carbs he probably had and if he has a bit of a cold or has had how much exercise.......all the details that go into his diabetes - I can no longer create that perfect range and flat line. I want to present the best possible picture of a scenario – I want to pick and choose what the situation so looks like I can feel like a perfect parent. Hummm....gonna need to work on that.
last year taught me how to swim.
.
how to float when the water becomes do deep. how to dive when the water becomes do shallow. how to breathe when the rest of the world wants to suffocate you in misery. I learnt that happiness comes in waves. I learnt that healing comes in waves. I learnt that I am both art and a work in progress, and I deserve time to come into my own. I learnt that pain is temporary and happiness is a choice. you can choose to be happy or you can choose to let your tears make a puddle on the floor so deep you can drown and lose yourself in. last year taught me how to swim. -iambrylliant
A gentler new year
Without the confusing details - I gave the wrong insulin again. My heart thumped as if a train missed me by that much. As I stood in the kitchen taking deep breath‘s trying to calm down I debated waking up my husband. I didn’t want to have to tell him that I messed up. I felt so guilty. A deep burning pit running from my heart to my stomach. Like a crazy person I spoke allowed saying what would you tell Scott if he was the one that made this mistake? Would you be mad at him? Would you blame him? Of course the answer is no. Of course I am human. I made a mistake and this won’t be the last time.
However, my reaction when I make a mistake has changed everything.
Here’s to being gentler on ourselves in the new year.