Letters to Ocean: Suffering


Ocean my son. How we have grieved for your suffering and loss of joy with the onset of your diabetes. I have tried to help in anyway that I can, through comforting you,  admonishing providers I thought to be careless, cruel or ill fit; smiling to soothe you and praying for you. However, my efforts have been a complete failure and it is agonizing to watch you kick, scream and cry - rightfully for what has been inflicted upon you. I have never seen someone poked with needles so many times, or screamed until they passed out and I wish I never had. Like all parents who are actually normal, I would trade places with you to spare you - though the suffering most likely would have killed me. I watched your bones be drilled for direct IVs to get you fluids, and I assure you were a friend, ever a close friend of deaths and sat upon her knee, tottering between the doors of worlds. The cruelty of many humans is only surpassed by their stupidity and ultimately, maybe briefly understood when they are in the position I am, and watched helplessly as an uncaring attendant vandalizes and rapes the joy from their loved ones – inflicted much pain, of course claiming it to be necessary and in the name of health.

You now rest safely with your mother. It is 2 AM, and we have been in the hospital cresting our third day. How can you, my son ever know joy again? How can I am unhear your screams?  The drilling upon your bones, eradicate the anguish, anger, powerlessness and despair. These have been transformed into shame. Soon, if we are lucky we will take you far from this place and put you back into your home, with your toys, your dog, your cat and the other staples of your life. How I feel I have failed you! To watch you suffer in the name of what? Now you must suffer forever, as we have to administer shots and blood test multiple times a day – to an infant who can barely speak? How can you not hate me, the author of your physical being, for cursing you with the vampirish disorder that will never leave you? Even now, and again I shake as I write with the echoes of your cries, hearing more from the other children in the hall – feeling they are you and that I have to standby and watch them scream to no end. Many have no parents to comfort them – May I always try to give comfort to you, my only son and joy! I am so sorry and love you more than life itself,


~Scott Sandvig 3.23.16~



There is a crack in everything. That's how the light gets in.

I choose to let the cracks let the light in. I choose to let the broken and bruised places in my heart let the light in. I choose to rejoice in the imperfect parts of me, of my son, of my family because by God we will et that light come blazing through.  Through accepting our darkness, we find the light.  Thanks for the reminder Leonard.


The birds they sang...at the break of day...Start again...I heard them say...Don't dwell on what...has passed away...or what is yet to be. Ah the wars they will...be fought again...The holy dove...She will be caught again...bought and sold...and bought again...the dove is never free.

Ring the bells that still can ring...Forget your perfect offering...There is a crack in everything...That's how the light gets in.

We asked for signs...the signs were sent: the birth betrayed...the marriage spent...Yeah the widowhood...of every government--signs for all to see.

I cant run no more...with that lawless crowd...while the killers in high places...say their prayers out loud. But they've summoned, they've summoned up...a thundercloud...and they're going to hear from me.

Ring the bells that still can ring...

You can add up the parts...but you won't have the sum...You can strike up the march, there is no drum...Every heart, every heart...to love will come...but like a refugee.

Ring the bells that still can ring...Forget your perfect offering...There is a crack, a crack in everything...That's how the light gets in.

Ring the bells that still can ring...forget your perfect offering...There is a crack, a crack in everything...That's how the light gets in...That's how the light gets in

That's how the light gets in.

Anthem Leonard Cohen



I need him.

I hate being away from my son. I feel like there is this rope attached between our hearts and the further away I get from him the tighter it pulls. When he is not curled up in my lap I feel like there is a crater in my chest. It aches. It weeps. I feel like part of me is missing. I felt this way the moment he was laid against my chest after he was born. Actually I don't remember that specific moment as three days of labor and a C-section had fried my brain. But I know he latched on immediately and I couldn't bear to be apart from him from that moment on. 

Now that we add diabetes to the mix that crater in my chest is filled with fear...anxiety...guilt. What if he needs me while I'm gone? What if his blood sugars go crazy? What if he just wants a kiss? What if he has a seizure? What if someone had to give him a glucagon shot? What if I miss him? What do I do when he's not there for me to take care of? What do I do with this crater sized hole in my chest? I need him as much as he needs me? Ahh. Yes. I'm starting to see. How do I protect him and control his environment if I'm not there? How do I protect him and control his environment even when I am there? What do I do with myself, with my heart, with my soul without him there for me to protect?

I keep thinking, "He needs me! He needs me!" But what have I just discovered? "I need him. I need him." 




Let me hide in my hobbit hole

This is hard. Like really hard. It's pretty hysterical that I thought things were hard before the big D word. I just want to hide in my hobbit hole of a house and not participate in real life. What is real life even mean? It's definitely real life here inside our hobbit hole. A life that I am barely holding together. This is hard. I'm tired. With no end in sight. My body is tired. My soul is tired. My heart is in tatters. Things got a little bit more out-of-control after oceans horrific oral surgery. We all had a big setback emotionally and with diabetes upkeep.  I feel like every time I turn around and think that I can't handle anything more, something else is piled on. So now I walk around waiting for the next big life hurdle that we are just supposed to deal with. How much can a person take? No like seriously, I wonder if there have been studies done about people in crises. How much is too much? Ocean was in the hospital in March but every day is a brand-new heart wrenching learning experience. My Grandfather died last month and tonight my sweet husband's father is in the hospital in pretty serious condition. Come on! Do we not deserve a break? What the hell is up with 2016?

Well, well, well. As I write this my kiddo just starting laughing historically about...well pretty much nothing. Just laughing because he can. Laughing to make himself laugh. I thank God for his joyful soul. It helps it not feel like too much every single second. 

Our hobbit door for our hobbit hole.  

Our hobbit door for our hobbit hole.  

Current stage of grief: F**cking Pissed

What are the stages of grief? Denial, anger, bargaining, depression and acceptance. Not particularly in that order. Well folks I have officially reached furious. I am so angry at diabetes. I am so angry at my son's stupid pancreas. But mostly right now I am beyond pissed at God and all the powers that be all over the flippin' universe. How could you do this to the child that you so perfectly put together? His soul is like nothing I have ever experienced. Joy spills out of his every pore. Are you going to steal that from him too? How could you do this to him? How could you do this to me? I don't even know who I am anymore. I don't even recognize myself. How could you do this to Scott and I? All we have ever wanted to do was create joy. In fact, when we eloped after 6 weeks of dating, Scott said, let's just keep having fun. Ha! Now what? How do we keep finding the fun? The joy? Ocean can still find it but I just don't know if I can.

Why would you make Ocean go through this? Why would you make us go through this? I don't care what lesson I'm gonna learn, I don't want to learn it. Oh, it's a lesson that my sons going to learn? Fuck that. All he sees now is his mother giving him shot after shot, finger poke after finger poke, controlling his every move and falling apart. How could he possibly love me after everything that I have to do to him? 

How did I finally moved to the anger stage you ask? Well, let's see...

Denial: I would assume this is the most common first stage, but let's be honest I really have no idea. My severe denial stage lasted until day 5 in the hospital. Although I kind of think we carry little pieces of our 'stages of grief' with us. For example, I still wake up sometimes for yet another day of diabetes and go, wait this isn't happening right? This isn't our lives? However, in the hospital I was sure that something else must be going on. For some reason I thought that if they could get him hydrated enough we would figure out that something reasonable and curable was going on. Something simple. Not an auto-immune disease that never ever, ever, ever goes away. (Ps so sick of people asking me if he will grow out of it or if he just has to take some pills or something. Seriously! I'm gonna throat punch you.) And of course the whole time I assumed I must have eaten or drank something that got in my breast milk and created this illness. I mean seriously the kid was in severe DKA and barely made it through that first night and I still thought it wasn't diabetes.

So, they get him stable enough with insulin (you know, for the diabetes he didn't have) and sugar and IV's and move us to a pediatric floor. We then, after being up and terrified for four days, get thrown immediately into diabetes education. Because the second you leave the hospital it's your job to keep him alive. Kelly, our diabetes educator probably thought I was pretty crazy pants that first day. I remember saying something like, don't you think it could be something else? Or, are you sure it's diabetes? And these are the words that moved me pass the denial stage: "there is absolutely no other disease that presents like this. Nothing. He would not have all of these exact symptoms if he did not have diabetes."

Cue sadness stage. But I did not have time for the sadness stage. I had a meltdown for one hour and my husband forced everyone out and said we needed a day to process, and then that was it. No time for sadness, no time for anger. Now I had to be Oceans' everything. No mistakes allowed. It was my job to keep him alive. 

So for the last five months I have been barely holding it together. No tears. Not a whole lot of emotion except for probably snappy diabetes related comments to my poor husband. Just diabetes, diabetes, diabetes. 0h and a significate amount of muttering to myself that usually consists of 'I can do this, its ok, we got this, I can do this, I can do this.'

Then, about two weeks ago Ocean had dental surgery. He had significant dental decay due to high blood sugars for so long and weak enamel. He was having daily pain from the cavities and there was fear of infection. Diabetics do not fight infection well so we were pretty much forced to get it taken care of.

To help us move further into our PTSD the surgery area is literally right next-door to the pediatric intensive care unit. In fact, the waiting room that we were in while Ocean was in dental surgery, is the same waiting room that we waited in for a little while when they were trying to save his life during the first 12 hours of his stay at Dornbeckers in March. I won't get into the details of the dental surgery but basically they yanked a bunch of teeth (that we were told they could save) they called us into the recovery room and he was so scared, blood was pouring out of his mouth and his cry was something I had never heard before. It was muffled and garbled with blood. He was scared. He was confused. Why the hell did they let him wake up without me already there by his side. He wasn't in pain yet because he still had the drugs from the surgery in his system. But he was scared. My sweet little one that all I have ever wanted to do was to protect, was scared. I laid next to him on the hospital bed and talked softly into his ear until he calmed down. The next four days were a nightmare. We had been given many different instructions, from many different doctors about how much over the counter pain medicine to give him. But it wasn't working. I didn't even recognize my son. He is the little boy who is easily soothed. Trips and falls, gets right back up. Just wants to be joyful and laugh. My little boy after surgery was inconsolable. There were tears from pain, tears from confusion, tears from anger. Kicking, screaming, frantically yelling. He could not, and would not eat so I had to force a sugar water mixture down his throat every three hours (and give insulin) to keep him from going into diabetic ketoacidosis. Just one more way, the mom who is supposed to comfort and love him has to torture him. He was hysterical. Holding his mouth and crying. Hungry and trying to eat but it hurt to eat so crying again. I thank God he could breast feed. He looked at me with such sadness and confusion and even sometimes anger. It was as if all the trauma over the last five months was just boiling out of him which caused all this sadness from the last five months to come flowing out of me. As he would cry I would wrap my arms around him and sob. Crying for my son and what he has and will have to go through. Crying that my mother instinct to wrap him in a cocoon of protection did not work. That cocoon was ripped and shredded apart by diabetes. Crying for the toll it is taking on all three of us. Crying for this life that we now live. Crying that I barely recognize myself anymore. Crying that I don't know how to keep doing this and I don't know how to take care of my sons diabetes while continuing to be a loving and patient mother. I don't know how to keep a hold of my identity, I don't know how to nurture my husband, the most amazing man that made me want to have this child. I cried because I don't think it's possible to balance it all. Sadness Stage.

And then the Anger State of Grief reared up and smacked me in the face. Hard. Here is how it happened: 

I have been trying to do little things here and there that I enjoy that don't have to do with diabetes. I have some girls that do a private yoga class twice a week that is a little piece of heaven for me. But I also have always liked crafting and projects and doing something that we have always called "making a house a home." Basically cozy house projects. So, as Ocean and I are night Owls, Scott was asleep in the bedroom and Ocean and I were out in the rest of the house. I began organizing and cleaning and wanted to make room for a little hot chocolate and tea station. Ocean was running around pretty much just terrorizing any area that I had just cleaned like little boys do. The moment of irruption came when I was trying to move this gigantic, and I mean truly gigantic and heavy roll of insulation. It had been in the living room since March and for some reason I thought that I could lift it up onto a ledge in the ceiling. Hard to explain without seeing our house, but pretty much I was standing on a table trying to use all my strength to lift this super heavy abomination above my head. It didn't work. I tried again. It didn't work. And again. And again. I was dripping sweat, I was sure that I could do it and for some reason I needed to be able to do it. (Yes, I know, trying to prove to myself that I can do everything I need to do to make this new life work) I tried again. And on that final time, as I was trying to lift it up, I started telling the roll of insulation that I hated it. I hate you! I hate you! I repeated it again and again as I tried to push the abomination above my head. Then my I hate yous continued until they became directed at God. As I continued to viciously tell a giant roll of insulation that I hated it. I was really telling God. I said I hate you probably a 100 times as I dragged that stupid, very heavy insulation outside until my I hate yous turned to yells and my yells turned to sobs and my I hate yous turned to sobs, and my sobs turned to I hate yous. You get it.

I have always believed in the combination of movement and meditation. Or movement and release. When you hold so many emotions inside, your body stores that trauma deep inside of you. In your body, in your soul, in your mind, in your lungs, in your screams. This is why people meditate with movement. Hoping to unlock what is deep inside. My issues were not so deep inside. They were festering and bubbling at the surface and there was something about using my muscles to the fullest extent (and to no avail mind you) that brought out that anger. And forced that release. And I let it all out. I went outside and I yelled and I cried and I sobbed and I screamed and I told God how pissed I was at him.

What does that accomplish? Well I still don't know how to balance all of these areas in my life. I am still so mad and I'm still so sad. But I have to let it out sometimes. And sometimes it does not need to be a peaceful way of letting your anger out. It doesn't have to be dignified.  It doesn't have to be a gentle session of yoga while you gently process your issues. Or a passive civilized therapy session. There is absolutely nothing gentle about this disease.  Diabetes is fucking brutal. So maybe sometimes the release needs to be epic. It can be you literally beating up an in adamant object, in my case The Bane of my Existence, the monstrous insulation, and you scream about it and pitch the most giant epic fit and honestly voice your anger at the powers that be and you know what? You feel better. How long will you feel better? Who fucking knows. But at least it's something.  And least it's something more.