Heavy energy



“You cannot erase memories but you can let go of the heavy energy that is attached to them.” -yung pueblo

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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.

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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.

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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.

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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.

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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.

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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.

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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?

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Will I be able to let go of the heavy energy attached to this night?

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Not yet.

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. 

4

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.

Delayed depression

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.

Joy

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. 

Lonely yet not alone

It's been a crazy 2 weeks. Crazy isn't even the right word. I keep telling myself to write a blog about it and I don't know how. I have such conflicting emotions. All I know is that I keep crying about dumb things. And we all know that when you cry about the dumb things you're crying about something else. I haven't let myself cry much since Ocean's diagnosis. I cried once in the hospital when our diabetes educator, and now friend, finally convinced me that he had diabetes. I think I said this before but I didn't believe them for like the first five days that we were in the hospital. And then when we got home there was no time for tears. It's been a year - I've been devastated, I've had panic attacks, I've been furious but I can count on one hand how many times I cried. I cried when I had the infamous attack on a roll of insulation (blog post "current stage of grief: fuckin pissed) but it was an angry cry. I cried as I held my son at home after his dental surgery as he cried and screamed in pain, in confusion, in hunger and I'm sure in anger. I cried hard that night. I remember holding him and just sobbing because I couldn't fix it. I couldn't fix any of it. I couldn't protect him from diabetes. I couldn't protect him from them yanking out six of his teeth when I thought they were going to try to save the teeth. I couldn't protect him from waking up alone in the after surgery room scared and confused. I remember laying down next to him on the bed and whispering in his ear "mommy's here." PS. Why the hell do they wait until your kid is awake to come get you? I thought I would be there when he woke up so he wouldn't be scared. I can't imagine how frightened he was. It makes me anxious just thinking back on it. The second he heard my voice he calmed down. Blood was running from his mouth, his cheeks were swollen to double their size. All that blood. All that PTSD soaring back from just six months before. We were in the same hospital, on the same floor, in the same waiting room.

I give Ocean 5 to 7 insulin shots a day. Most of the time he doesn't react much. He prefers them in his arms but his arms are getting beat up so I've had to start doing them in his thighs. He doesn't like it but once it's over he just moves on. Except for this morning. I went to give him a shot and he squirmed away for me. I held him down and gave it to him. Afterwards he looked at me different. He looked at me like I hurt him on purpose. He tried to bite me in response. Like you hurt me, So I'm going to hurt you. I cried. It always felt like he didn't connect me to the shot. But today his eyes held betrayal. All I could do was pull him close and cradle him in my arms. My arms that are supposed to protect him. My hands that are supposed to keep him from harm. Those same hands that hurt him every day.

That's a little like how I feel with all of this attention we are getting. I want to curl up with him and hide. Most of it is positive. Only some trolls and that's to be expected. But even with the positive response I feel like I want to hide even more. I'm sitting here trying to figure out why. And I guess it's because our story is so real to us every day. Our memories and PTSD from the hospital are still very real. I like to keep them in a little box in the back of my mind tightly closed. I tell myself I will deal with it at some point but I can feel it bursting at the seams, saying deal with me. Look at me. When I focus all my energy on the day to day requirements of keeping Ocean alive I can mostly ignore those memories. But I think that's what's happening. All of this talk. All of this attention. It's making my mind to say -deal with me. Look at me.

No. I don't want to. But the tears seem to be spilling from the box. Weakening it. Willing it to open.

Paradox to Progress

How wonderful that we have met with a paradox. Now we have some hope of making progress.            -Niels Bohr

What a week. Interviews. News. Internet. CNN. Excitement. Exposure. Trolls. And to top it all of Shake it off dance parties with all three of us.

Here is the link to the Channel 12 segment on Ocean.  If you have read much of our blog you will see that it is a bit more than chopped but that's the news.  Hopefully it will bring some more awareness to type one or at least lead people here for some further insight.  Channel 8 airs tomorrow.

 

and the CNN story

 

http://positivr.fr/ocean-bebe-trois-ans-diabetique-parle-pas-peinture/

Nowthis News and a French website Positivr

https://www.facebook.com/NowThisNews/videos/1419854278104692/?pnref=story

News folks at our house

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On Monday we had channel 12's Haley Rush come for a quick interview. It was kind of a whirlwind, she called at 3:30 and asked if she could come right then and so we scrambled around in a wash my hair because it was pretty gross and had a fun interview with her. Ocean wasn't really up to painting much that day but Haley obviously made this segment work because CNN picked it up and it's going crazy on mine. So thank you Haley!

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And then on Tuesday we got to meet to the fabulous Tracy Barry (I hate to admit that I didn't know who she was, I stay away from the news because it hurts my heart.) They took the time to play with Ocean and were here for almost 2 hours. Talking with me, taking pictures, watching Ocean paint, chatting with Scott and just enjoying their time with us. I could feel that they cared about our story. It wasn't just about filling a news slot. Hopefully the segment will show next week. Here are some fabulous pictures of Ocean having a blast.