Never lose hope, my dear heart, miracles dwell in the invisible. – Rumi
Ahhh Rumi - you always speak to my heart.
Diabetes is an invisible disease but Ocean is not invisible. Over the last two days I sent out the small essay to diabetes charities, newspapers and TV stations. And they have proven that Ocean is not invisible because they have responded. We didn't need their proof, but we are excited to share Ocean's story and bring hope to other type one families.
Nonverbal T1D Toddler Paints his way to Alert Dog
Our two year old, Ocean Scott, was diagnosed with Type 1 Diabetes a month before his third birthday. Due to a protracted period of detection, and severe DKA, not only did he end up with a temporary femoral line to save his life, but his speech suffered a severe regression - or in other words, he could no longer talk.
As a parent we fear that the challenges he will face from t1d and its complications may overshadow his journey in life.
However, Ocean has already learned to express himself; through his art. As he has had zero instruction, what he paints truly is his soul - literally making the unconscious, conscious - and by doing so, quietly illuminating the beauty that largely goes unrecognized in our own.
He has already shown us that no matter what our struggles in life, we all have our gifts and it is time we stop criticizing each other for our differences and celebrating the gifts we each have. Its time for us to live.
His art and my blog at oceansart.org are dedicated to helping others in their search for joy while living with chronic disease. You will even find videos of Ocean painting. Half of the proceeds from Oceans art will be given to diabetes research and the other half will be saved to purchase a Diabetic Alert Dog.
Our lives have been forever changed by diabetes and at times it is hard to see the light but Ocean’s art shines so bright that it reminds us to hope.
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~
Ocean my son,
"Be yourself" means "think like us." Who really wants someone to be themselves? How dangerous a thing – especially for any organization. Be Yourself ; pieces fall where they may and they do anyway - but actively attempting to do this may influence the end result, plus you will be happier along the way! We cannot know the end, only discover the way. Being said – the journey is the only thing we have some control over – enjoy it!
I Love You!
~Scott Sandvig 3.26.17~
A diamond is not ashamed that it was forged in fire-excruciating and challenging it's very existence as a lump of coal. The pressure, coupled with millennia of darkness transfigured it from an ugly, common, worthless substance into an awe inspiring brilliance. It's very essence, situated amongst the immortals, when once it could only feed their fires. When others gaze upon its presence, they see not only its commanding facade, but their own, refracted in its illuminating – connecting all three with vision, identity and a view of what they might be like could they withstand the pressure fire and the most painful of the transfiguring elements; time. We must see ourselves as a process – on going, transformed and eternal, rather than blame the past or shame ourselves for what we did or did not do, could or could not have done. At times, a diamonds only light is it self but even with just a glimmer, it transcends oblivion and heralds eternity, as it illumes the dark. Honor the past with remembrance, blame or suffer no more. Be not the diamonds you were meant to be but rather the one you are; Shine. Dad
~Scott Sandvig 3.27.17~
Well I made it through the day. One year ago at this time Ocean was still in pediatric ICU fighting for his life.
For about six months before his diagnosis there had been some changes to Ocean's habits. He stopped repeating or mimicking things that we said or did - I thought he was just being independent. He started staying up till 3 AM every night. For the life of me I could not get him to go to bed earlier - I thought it was because we had been staying at my parents house for a couple weeks while our roof was repaired. In reality what was happening was his pancreas was slowly starting to decline. He would eat a big meal in the evening and his blood sugar would spike up so high that he could not sleep. Of course I didn't know that. To an outsider it seems like type one diabetes happens overnight. But it doesn't. If we had known the signs to look for we could have caught it earlier and saved him from that first horrible day. Day 1. But we didn't. Guess who has guilt about that? Maybe I can work on letting my guilt go by spreading awareness about the signs of diabetes so other mamas can catch it earlier. Slowly his speech declined more and more and his interest in being active. He just wanted to sit in my lap and nurse and watch movies.
Then he got croup. They say croup was the trigger that finally sent him over the edge. With type one diabetes even though the pancreas does slowly start to decline, at the end there is usually a trigger that completes the autoimmune response. The response where the beta cells that create insulin are being killed by his body. When Ocean got croup I thought it was the worst thing. He had literally never been sick (avid breastfeeder here.) I was so worried and I thought I couldn't be more scared. I was wrong. We got the steroid for the croup, he got better for about two days and then the child I knew was gone. He cried and cried and cried. If he wasn't crying he was sleeping. If any of you know Ocean personally you know that he is innately happy. Easy to please, quick to laugh. I remember his breathing. Scott kept saying something isn't right with his breathing. It was so labored. I thought he must have a sinus infection because it seemed like he was breathing through his mouth. I made myself wait until Monday to see his regular doctor instead of going to ER. Man, I should've taken him in then. Scott wanted to, but I kept insisting that he has no fever so it can't be anything that bad. I knew something was wrong but I didn't want to believe it. I wish I had listened to Scott, and trusted his instincts
Oceans eyes kept rolling back in his head and then as I said he would cry in a way that I had never seen before and haven't since. It breaks my heart thinking that I just let him continue to be in so much pain. I wish (lots of I wishes) when I had taken him in for croup they would have noticed something else was going on too. But he was so upset that I think the doc was just trying to get him in and out for my sake.
I remember wrapping him up in our favorite sling and walking up and down our property thinking that it was the croup coming back and that he needed the fresh air. Ocean had never been sick before so I didn't really know how he would react when he was sick. I didn't want to take him to ER and have them be like it's just a stupid cold. I should've (lots of I should'ves) listened to my heart - I knew something was wrong. By Monday morning there was no doubt about it. Primer, our sweet pitbull was frantic. He would not leave Ocean's side. He had always enjoyed Ocean, but was pretty attached to scott and always slept by his legs. He was practically laying on Ocean, looking at me like 'Mom something is wrong.' Ocean would not stop crying, even for a moment. I called his doctor and said I'm bringing him in right now whether you have room for him or not. Make room for him. Mama Bear. When our sweet doc saw him, she said I can't see any physical reason why he is acting like this or why his breathing is so labored. And he had lost 7 pounds in a week and a half. I could tell she was freaked out but I don't think she wanted to scare me. She sent us to get some blood work done at the hospital (because you get same day results) and then said we will check back in with you this afternoon. Remember Ocean hasn't stopped crying this whole time. Nothing I do comforts him. I get to ER (scott met me there) they take his blood and instead of going home to wait for the results I checked him in to the emergency room. Thank God I did because as you will learn every moment counted that fateful Monday one year ago.
So we're at this little shit hole of an ER in a tiny hospital in Stayton. Ocean finally calmed down a little bit. An EMT instead of a nurse (what the f?) came in to ask about Ocean. Like I said, little hospital where obviously everyone had multiple jobs. He asked the regular questions. I couldn't tell him much except that something wasn't right, he had thrush and a massive yeast infection that had come up basically overnight. And his breathing was weird. We waited. We waited some more. And then the doctor came in. At about 1 PM we heard the words diabetes. I didn't believe him - he also delivered the news in such a offhand kind of way, not the best side manners for this fella. He literally told us he has diabetes and then just left the room. Nothing else. Scott and I just looked at each other. What was there to say? This actually be happening? The doc ran a second test on his blood, I guess to confirm the diabetes and then told us we would need to be moved up to hospital at 0HSU in Portland.
Then they started the torture of trying to get an IV line going. They spent three hours trying to force a fucking needle in his vein to give him fluids and obviously insulin. I remember they kept being like oh let's bring in this guy he's great at bloodwork. And when he couldn't get it, it was oh bring in "Mildred" she's fantastic at IV's. Nope. Even the doctor tried (probably thinking he was better than everybody else and could do it, at least that's the vibe you give off) and get a intravenous line going because he was beyond dehydrated, his veins were flat.
Ocean was hysterical and so was I. We knew when online got put in we were being sent to straight up to Portland so Scott told me to go home and get supplies and things we would need for the hospital stay. It didn't make a lot of sense for me to leave but I realize now that he was trying to spare me from watching them torture our son. I think he had been told that they were going to do an I/O and didn't want me to see it. So I drive as fast as I can back to our house. Frantic. Scared. In shock. I called my father to have him pick up our extra car at the hospital and then meet us in Portland. And then I called my mother who was in Indiana visiting family. It the only time I cried until about five days later. I said to her "they say he has diabetes, and we have to go to Dorenbeckers at OHSU. I'mscared." I was driving superfast down a windy road and starting to cry, so that's basically all I told her and said I will call you when we get up to Portland. But hearing my mom's voice and telling her about my son made it feel real. Being a nurse herself she knew it was serious and I didn't know it at the time but she immediately booked a flight back home even though she'd only been in Indiana for two days.
When I got back to the little hospital I heard a drill coming from his room. No really, I'm serious. A drill. And my child screaming. I look in the room and the doctor is drilling a hole into his Tibia (bone in lower leg) trying to reach the bone marrow to be able to administer fluids and insulin since he was so dehydrated that his veins were flat and could not be accessed.
Ocean was arching his back as Scott held him against his chest, nurses are on either side holding him down. Scott tells me to leave the room. Again trying to protect me. I don't know what to do. I lean against the wall right outside of the room and slide down to the floor feeling faint. I can hear my sons cries and I can't protect him. I hear him throw up from the pain. My sweet sensitive husband being deeply traumatized by watching his sweet little boy be tortured. It was about three hours total of trying to get a intravenous drip going and then a intraosseous infusion - or IO (the line in the shin.)
They finally seemed to be somewhat successful and then the rush began. I laid down on the stretcher and I finally got to hold my child again. He immediately calmed and basically passed out. His eyes were half open as he slept and to be honest he looked dead. I hate even typing those words. He was not only incredibly sick but had just been through three horrible hours. Scott said he passed out repeatedly from the pain. I looked into my husbands eyes and saw my fear reflected there. I also saw something I had never seen before in his eyes - a haunted look that I can't even explain. I still feel guilty that I was not the one holding my son as he went through those things at the hospital. And I still see that look in his eyes at times. My husband will have those memories forever. Those memories that he tried to protect me from.
Ocean and I got loaded into the ambulance and Scott drove our car up behind us. At first the EMT's seemed not too worried about Ocean and said they were not going to put the sirens on. We're just going to head on up to Portland. But as he began driving I could tell they started to get worried. It seems like every 10 minutes or so The EMT would try to make sure that he could wake Ocean up. He would be like 'hey buddy how you doing there?' And shake him a little bit, Ocean would react enough that we knew he was aware. And I realize now that he thought Ocean was going into a coma. And believe me he definitely looked like it. At some point they ended up turning on the sirens and getting us the hell up to the special children's hospital. Once we got there we were rushed to Pediatric Icu with specialized doctors who definitely knew how much danger Ocean actually was in. We should've been life flighted up there immediately. Instead of this teeny little hospital taking all that time working on him as he was literally dying. Edit: I have since learned from a paramedic friend that legally (especially with a child) they have to get a line in before the patient leaves the hospital. That makes me a little less mad.
The staff in PICU got Ocean settled in his own room and by that time he had woken out of his basically unconscious state and was visibily very uncomfortable. Scott was there by that time and noticed that the leg that had the I/O in it was gigantic. The I/O had failed and infiltrated. Meaning the fluids and medicine were no longer going into the bone marrow to help him they were just filling up underneath the skin. When the nurse realized he wasn't getting the medicine he needed things got crazy again. They pulled that I/O out (worst sound every-they literally just braces his leg and yanked it out) and tried more intravenous options. Later I counted at least 40 bruises where they had tried to put in a line – bruises on his hands and feet, bruises in his arm, even bruises on either side of his neck. It wasn't working. So they had to try the I/O again. They had to drill into his leg again. I laid my head next to his head as he screamed and arched his back. As he passed out again from pain. As they tried again and again to get some sort of line into him so that he could get the medicine he needed. He wasn't allowed any liquids just in case they needed to put him under (which they did) and as he screamed I saw blisters and scales and blood on his tongue and inside his mouth. All I could do was whispering to him that mama was there. "I'm right here."
They had brought in the head doctor, Dr Ipsen I believe, to help our nurse. I could see that they were scared. I heard the nurse call for social services and clergy. They knew he was in trouble. After endless pokes and the third failed I/O the doctor took us aside and said we have a couple options. I don't remember what the options were I just remember her saying I don't know what the best option is, but we have to do something. Scott decided which one we should do, which was to put a central femoral line in. Ocean would have to be put under anesthesia, which the doctors were worried about because of the brain swelling and damage that could have already been occurring. I think they were afraid if he went under he might not wake up. But we had no other choice.
It had to be a sterile environment and we had to leave. They made Scott sign some horrible piece of paper about what would happen if he died during the procedure. They brought in a breathing tube, they brought in and anesthesiologist and a million other things and made me leave my little boy there all alone. I just had to walk out - every instinct in me was screaming NO!
They said it should only take a half hour and sent us out to the waiting room. I remember walking out into the hall and feeling as if I would collapse from fear. I couldn't hold my body up. I tilted my head back and let out an anguished moan. My father had gotten there by that time and said that my mother was flying back from Indy the next morning. We sat in that waiting room. That horrible, cold, dark, soul draining waiting room. After about a half hour someone from social services showed up trying to give support. I just wanted her to leave us the hell alone. She asked if we wanted clergy, I said I already have one here, my dad (used to be a pastor.) Time slowed as we waited. And waited. After 45 minutes I wanted to go check, I thought something must be wrong. I knew it wasn't going well if it was taking longer than they said. The woman from social services said she would go check in on him, but then she didn't come back. After what seemed like forever and after imagining my son dying without me there next to him, the woman from social services and the head doctor came walking out of PICU. It was after midnight and had been at least an hour and a half. I remember feeling as if I wanted to stop time, I didn't want to hear what she was going to say, just in case it was bad.
This doctor, who had been so serious and no nonsense before came out to the hallway and as we walked towards her she punched her fist into the air and said "we did it!" She had a huge smile on her face and gave me a hug, saying 'man he made me work for it but we got it in there and it's going to be OK.' And it was. Over the next eight days there were many more dramatic moment, there were many more life changing events. But now that he could actually get the medicine he needed, he had a chance. A good chance of surviving.
They had moved him into a crib so he wouldn't roll out of bed and although it was against the rules I crawled in next to my son and held him, and nursed him. And slept in that crib the next four days. The nurses seem to know that no matter what they said I wasn't getting out. So they let me curl up with my baby. I whispered 'I'm sorry' over and over into his ears.
I will forever be greatful to our sweet little nurse. I think her name was Lauren or Laura. Each time I would start to panic she would look me in the eye and say we are going to be OK. I have a vivid image of her on the other side of his bed, across from me. Working diligently on Ocean. You would think that I would feel angry at her (like I do at the people at Santiam hospital) for the pain that she had to put him through but it was so obvious that she was as gentle as possible and if something didn't work, she stopped and tried something else. In fact, before they brought in Dr. Ipsen we had a interning doctor that was helping Laura/Lauren. He kept trying to push fluid through the I/O. Which is how you know it's working. Each time he would push the fluid through Ocean would arch his back and scream - which meant it wasn't working. He keep trying over and over. I could see that she was irritated with him and she finally told him to stop it. He said, we have to find something that works and she said, I know but that's obviously not working and you're just hurting him, so stop. We will do something else.
She was fierce. She was gentle. She was an angel. She and Dr. Ipsen saved his life that first day. That first horrible day. The longest day of my life. The day we heard the words diabetes.
Ocean my son! Though you cannot speak, you are feeling closer to me – often taking me by the hand to lead me to a new and wonders discovery you have made, or to share a TV show, or pay a visit to the fridge. Today I sang a song to you, song my mother used to sing – "the little blue man" – and you laughed and laughed wanting to be tickled more and more, as I sang through the "I love you, I love you" parts! I think you would have enjoyed her – perhaps you remember her somewhere from the field beyond, before you came to us? Your diabetes is beyond managing, and you have lost your appetite for most things except chocolate, chips and pizza. Still you bless us with your smiles, adventurous spirit and endless curiosity. These are just a few of your mannerisms that bring us joy and make it so easy to love you! Never let someone – even if it is your parents, earthly or otherwise – take your self from you! If ever you find yourself there, step back into the light that is you and plot new course. We are the light.
I love you my dear son, Dad. 1.17.17
Amazing how many songs I have always loved now seem to be speaking to me about our diabetes world.
Named one of his paintings after this song.
I feel like I died and went to heaven, the cupboards are bare but the streets are paved with gold.
I saw a young girl who didn't die, I saw a glimmer from in her eye. I saw the distance, I saw the past. I know I want to wake up in some dream that can last.
I feel like I died and went to heaven, and bring the cupboards are bare but the streets are paved with gold and all the lights were turned down low, And no one wondered or had to go. Out on the corner the Angels sang, there is a better life for me someday.
I feel like I died and went to heaven. The cupboards are bare but the streets are paved with gold in.
One year anniversary of Ocean's diagnosis.
Sun Salutations for anxiety relief. Scott playing piano in the other room. His anxiety relief.
Edit: this is my other de-stressor. Lots and lots of books. Books for days. Books for years. Books to get away. Books to relate to. Books that make your house a home.
Follow this link to see how the JDRF foundation has changed the lives of type ones in the last 50 years.