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
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.
“You cannot erase memories but you can let go of the heavy energy that is attached to them.” -yung pueblo
I needed this. I gave Ocean the wrong insulin the other night. Short acting instead of long acting. Very dangerous. He started going low and refused to eat and kept spitting out the sugar water. I put him in the bath because of course his hands have to be clean for the blood tests he was going to be having every 15 minutes for the next three hours because of my mistake.
Ocean kept spitting out the sugar and sobbing. He has been force feed thousands of teaspoons of sugar since diagnosis and he is sick of it.
But he was starting to shake from the low blood sugar. I began to panic and screamed at him that he was going to die if he didn’t drink the sugar. I screamed. At my little boy. And sobbed. And screamed again. He was scared and his blood sugar was dropping fast.
It wasn’t going to work. I was going to have to give him a glucogan emergency shot and go to er. In one breath I forced myself to calm down so I could save
my sons life. I can’t be hysterical while giving him a giant shot of hormones to make his blood sugar come back up.
I wrapped him up and held him close. Whispered I’m so sorry in his ear over and over. He couldn’t breath through the tears let alone eat. I climbed into bed with him, the glucogan and blood sugar kit and a ton of junk food.
I made a simple plan. Feed him carbs he will actually eat even if they aren’t fast acting carbs and if he passes out be ready to buck up and give him the big boy glucogan.
Each 15 minutes blood check brought us farther from the mistaken shot and closer to safety. And we made it. He didn’t need the glucogan or the hospital. He made it through ok but I feel broken. I can’t stop thinking about breaking down in front of him In the bathtub. About screaming at him in fear. Seeing his face contort into a bigger, deeper more heart wrenching cry. My soul feels crushed. I haven’t been able to breathe deep since that night. Is he thinking about it too?
Will I be able to let go of the heavy energy attached to this night?
You fall into a deep sleep lying lengthwise along the the top of my body. As if you feel as though you can still tuck your legs up and fit in the space above my belly button, The weight of my love for you feels as heavy in my heart as the weight of you against my chest. I dread the day you no longer snuggle with me any moment possible.
You turn cold and clammy. You hair wet with your sweat. My thoughts run through the usual steps. Did you fall asleep just now or go unconscious from low blood sugar? Was that twitch in your leg a sign you are about to have a seizer? But I just check your blood an hour ago. Maybe your just hot.
I sorrowfully and carefully roll you off my body onto the bed and gently push the damp hair from the sweet face that is my world. I reach for the kit. And check you for the 2,672nd time so far this year.
You know somethings not right when you post birthday pictures of your four-year-old three months late.
It was a low-key day with just the three of us. I filled his tower with balloons and he popped every single one and loved every minute of it. We let him run like a madman at Toys "R" Us and came home and played with our new trains.
His smile is everything.
About a month after Ocean was diagnosed one of my friends signed Ocean up for a group on Facebook with an active website here at whoirun4.com. Within days I got an email saying Ocean had been matched with a runner, I replied saying i wasn't sure if Ocean qualified since he obviously technically could walk and run. She said he did qualify. As it turns out this organization is about giving emotional support to those in need. So we "met" Arlene Allen online. She has been waiting months for a match, I don't think we waited more than a week or two. So she was excited and immediately started posting running pictures a couple times a week, each time saying to Ocean that she was thinking about him during her run and about all that he has to go through and that it gave her strength to keep going. Can we say "um wow" Arlene's awesome. Months went by. Lots of Facebook posts, a couple get to know you chats with Arlene and I and then one day we get a package. She gave him every medal she won since she met us, including her first marothon medal. We were floored. Scott was fighting back tears, I was in shock that with all the negativity we get a stranger could be that giving. That unconditional.
Thank you Arlene. You have touched us and given us more hope then I know how to express.
Arlene on a run for Ocean in Hawaii where she lives.
Happily wearing all the medals.
I haven't written in a while. Usually the way I write is pretty random. Basically something will keep running through my head until i write it down. But the last couple of months my head has been blank. No huge joy, means no huge sadness in my chest right? Right for a while. But eventually bit by bit the shield I distinctly remember putting up around my heart while in the meditation center of the hospital, eventually that starts to rust. Eventually that shield starts to deteriorate. Eventually that shield has a big crack down the center beginning to expose your fragile heart. And one day out of nowhere comes waves of sadness many many times throughout the day and you realize that the shield is gone. What will protect me now?
It's time. It's time to open my heart and let my husband and family help me through this life. I did it on my own, quite unhappily for 16 months and all that's left inside me is tears and anger.
The last couple days I have had a hard time getting out of the house – well to be honest the last 16 months I've had a hard time getting out of the house but the last couple days have been rough. I called my mom, I didn't know what I called her for. But I called her and ended up asking if she would run to the store for us. It's hard to ask for help. But she graciously said of course and came over with some things to tide us over. I put the groceries away while she played with Ocean and then my husband Scott urged me to do a little yoga while Ocean was distracted. I did. It was good. It had been a while since I did a full session. When mom left I was lying on my back on the mat, she leaned down to give me a hug and all I could do was say I'm so sad and start crying. She was comforting and wonderful as usual. She told Scott on the way out that we are doing a good job and going to make it through.
Later that night I sent this text to her:
Thank you mom. I know in my heart we will be ok but some days are just really sad and hard and that was today and yesterday. And probably tomorrow.
She wrote back the most beautiful thing:
You are one of the three loves of my life. You are like a piece of me. When you hurt I hurt. Your grief and sadness is understandable. We can be strong and still be very sad and angry. You and Scott and Ocean will make it down this path intact. May you be even more then intact but strong, wise beyond your years and compassionate to others whose path goes along a difficult way. You are loved beyond words.
Like I said it's time to bring in the family. I don't have to do this on my own. I don't want to.
I remember so vividly when Ocean was growing inside me. Still to this day every time he gets hiccups I can feel the movement in my belly when he had them in utero. He seem to get them almost every day. I remember the first time I felt it I thought he was rhythmically kicking. Scott and I couldn't really figure it out and it was of course my mother who felt my belly and said that he had the hiccups. It made him so real. It's almost like for some reason the hiccups gave him a personality. Every time he got themwe would laugh. He brought us laughter from the very beginning. His spirit is full of joy. There's no better word to describe him. He wants to laugh. He wants to play and tease and be tickled. I'm so thankful that diabetes has not taken that from him. And I'm so thankful that he continues to bring us joy. Lots of moments are hard. Lots of moments are happy. That's just real life. Diabetes or not. I want to choose to focus as much as I can on the joyful times. And to be patient during the hard times.