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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

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.

Self care

Since diabetes came into our lives I liked all care of myself go. I didn't sleep. I didn't eat. I didn't laugh. I've barely even brushed my teeth.  about seven months after his diagnosis I finally fell apart. My body said no more. My body said please take care of me. The thing that is helped me the most (besides brushing my teeth a little bit more so my husband will still like kissing Ha!) is daily yoga. I've had yoga in my life since I was 14. I've had periods of my life that I didn't do it regularly but once I start teaching in about maybe 2010 I started doing yoga for times a week. I only did yoga when I was teaching or when my anxiety got so bad that I had to do it. It was still good for me, and it was still healthy for my body. But I had not made it my own. Now that I have taken my practice to the place where it is a time of peace for me, a time to grow, time to reflect, even a time to play (as you will see in some pictures) it has made an amazing change in my life. I am sleeping better, I have an appetite again, my anxiety is more under control. It almost feels like I've made a new friens. I can't wait to get to my mat and have my time with her. 

As parents we put our child before absolutely everything. But when we put our child completely before every need that we have there comes a time when your body and mind will collapse. We have to honor ourselves. I want to be me. I want Ocean to grow up with the person that I have worked hard to be, and I will lose that if I continue to cast myself. So I have chosen to honor me. Most of the time my yoga session is on my own, some me time. But I have also wanted to expose Ocean more to yoga so that it can be a part of his life. We have been having fun with some creative poses.