Thursday, December 29, 2016

The Ghost

The Ghost

Every day I live with a ghost. I get up, get in my truck and go to work. I drive and the tears fall. I drive with a ghost. I can count on one hand the number of times I drove a car without Kreed. He was always there. We always had an adventure or place to go. We jam out to music, have conversation and rock the car. Now I sit with ghost. 

I go to work and be with kids just like him and have to help them, even though I couldn't help him, I couldn't save him. He's the ghost there with me, in everything that I do. And all I want is for him to be back and having these epic adventures with me. Teaching him about the world and him teaching me to enjoy this life we have. Instead his ghost shadows everything I do. 
I sleep at night and am still plagued by his cries, his rages, his giggles. I still have all the alarms on my phone listed but no longer set. My nights have no purpose anymore. 
I come home from work to the emptiness of our house and have no idea what to do most days. My whole world was his needs, planning for him, hanging out with him, helping him and doing things with him. Now his ghost just sits with us in the room he barely lived in.  

No one, and I mean no one but someone who lost a child can possibly understand this. And then, it's even more with a special needs child who was your everything and loved life so much and found so much joy in his world that you couldn't help but feel it too. 

Now all we have is memories. Holidays become nothing because he was the reason we would go all out. I can barely be on social media. I see parents talking about how they can't wait for their kids to go back to school and all I want to do is shake them and tell them- don't you know! Life can change in an instant and you will have no more days with your loves. Hold them tighter, hang out with them longer, enjoy the moments! Don't wish for them to be out of your presence because they could one day be permanently out of your presence and you will wish you had held them longer. 

Find an adventure, teach them more, have more conversations, hold them longer, kiss them more, enjoy every moment your given because on any particular day at any particular time it could be gone. I would give up everything to have one more moment. A second. Anything. 

We put Kreed above everything and I will never regret that. As we taught him and went through wicked hard times, he learned and learned to love his life despite any disability. He proved you could do anything, if you just tried. We were never afraid or if we were, we did it anyway just to get over the fear. 

But now. Now, we are left with his ghost and nothing but memories. We can't reach out and touch him. We can't hold him. We can't see him. We can't hear him. And we are just left. With this massive empty void to fill that nothing does. It will remain there forever because you can't fill his shoes. He was so joyful and taught so many so much. Most of all, he loved his life. 

So every day I get up and spend my day with a ghost, knowing all I have is pictured and videos to hear or see him and I'll never get to hold him again. We will never make another memory with him. I go to sleep at night and spend the night with a ghost and phantom laughs and sounds. 

People see me smile and they think I'm fine. Well there's that grin, wow they just be doing so much better. Bull shit. The smile is to comfort others while we are silently grieving inside and struggling to make it through every day. You eventually become numb in this grieving process because the sadness becomes so overwhelming you can barely survive it. Especially at holidays. The sadness and grief is so big, if you let it out, you fear you'll never be able to stop crying or be able to seal up the emotions again. People aren't prepared for your emotions because they have no idea the emptiness you live with or how hard it is to function every day. If they did understand they wouldn't say stupid stuff or wouldn't turn their back because we all seemed fine. 
We will always seem fine and plaster that smile because how else would we possibly get out of bed every morning?

With his ghost. His memory. We continue on because we refuse for him to be forgotten or refuse for his life to not have meaning. We have to be the ones to make sure his light still burns. But inside we die a little every day. But we smile and function.




Tuesday, November 15, 2016

The Quiet

The Quiet
We are surrounded by the quiet. Where once was a young man's voice of happiness and joy and at times of pain...there is now only the quiet. 

I let the six month anniversary of his death pass without a word because I want others to feel how it feels- the quiet. 

What I wouldn't give to hear his sounds in the night. The sounds of the morning. The sounds of his living in each of our days. What I wouldn't give to sit back and watch his ingenious ways to flood a bathroom, make a giant mess eating popcorn and chips- oh the sound of his crunching of chips, how I miss thee!

Instead we have the quiet. 

Six months ago we lost him. A year ago his breathing difficulties began, as he silently marched toward his death without a soul knowing for months. While the depth of his issues was unknown, we were hearing him loud and clear as his pain screams began. We just didn't understand. We tried to protect him. To understand. To make doctors understand. And through it all, we made sure he was living the most epic life possible. 

I never knew why my drive to give him such a life was so high- I just had the constant gnawing, the constant feeling that I needed him to live an epic life. We wouldn't hide away from the world out of fear. Instead we would teach- teach him the feel of the wind upon his face during a hike, 
the splash of mountain water from a waterfall, 
the taste of every French fry his heart desired,  
the smell of his favorite sugar cookies whenever he wanted and make sure he experienced everything he ever wanted and more. We made sure the world wasn't scary a place for him by taking him into the world and helping him understand it and live within it. We made sure our boy had a voice so that he could navigate this world and tell the world his story. 
Even in his last days he was learning- to go down to the snack bar at the hospital, pick out his chips, scan it, swipe a debit card and go! He was so thrilled to be independent. 

And it's the quiet. The teaching is done. The joy and happiness has left us. Living an epic life came to a screeching halt.  

Six months has passed and we remain broken, heart broken, soul-torn. The waves of grief are unending and we do our best to just remain above the surface, constantly fighting the urge to let it take us under.

Six months has passed and we still are not used to the quiet. 

Six months has passed and we would give anything to hear the sound of his voice, the feel of his kisses/licks, his nighttime snuggles, his love of all things French fries and pizza and his incredibly brave and joyous take on life. 

Kreed taught us all to truly live, even in his last days. He will forever be the bravest person I will ever meet in this world. When the grief waves come crashing down and sends us spiraling down with the under is those times I remember our purpose now on this earth- ensuring Kreed's legacy lives on and his life continues to inspire others to find their voice. The only way I can deal with his death is making sure his life had meaning- that he continues to show others how to use their voice and live a no limits life.  
But what I will never get used to is the quiet. This six month anniversary came quietly. Snuck up on me and overwhelmed me. So I remained quiet. Unable to know what to think or feel. But here we are. Six months passed. Our sadness has only grown and the sadness deepened. 

And we continue to live with the quiet, longing for him. 

Thursday, November 10, 2016

Death is Not Beautiful

Death is not beautiful. It's not a happy event in a life. It's the end of a life. And for a mother who loses their child, their heart, and their's the most horrific pain that would or could ever happen. It's not about the fact that they aren't in pain anymore and are now wherever your religious beliefs thinks they are. Because all a mother wants is their child here with them, not suffering and enjoying life with their family.  But that reality is gone and replaced with a vast emptiness that is infinite and a pain that will never leave you and cause a pain unknown and inconceivable to anyone that has never experienced such a child loss. 

Death is not beautiful. Watching our son bravely fight his illness despite the immense pain it caused him, only to stop breathing and lose his organ function and in his last days and hours, struggle to breathe, hearing that horrible sucking noise coupled with a hoarseness and labored breathing sounds that lets you know the end is near. Watching them lose the ability to swallow and unable to take anything by mouth that once filled their heart with joy (French fries!)  and the life continues to seep out. Your once joyful child is facing the end of life and you are completely unable to save them, shelter them, protect them or keep them with you for even a second longer than their body will allow. 

Death is not beautiful. You hold your child whose life is leaving and it's ugly, horrible, heart breaking and begins the soul tearing. The heart breaking in two. You hold your child and hear the last time their heart is ever going to beat again. Nothing prepares you for this. Nothing comes close to this feeling and living this nightmare. Your child's heart stops beating and yours continues to beat a now shattered heart. 

Death is not beautiful. We aren't happy our child died and satisfied that they are now with "cool angels" (yes someone actually said this to a mother who just lost their son). We are devastated beyond belief. Shattered. Broken. We cease to be the people we were and begin a completely new life forever changed into someone new. Someone who now will live a life with our souls torn, our hearts shattered and a sadness that will never ever leave us and the feeling of our life being incomplete forever. We are angry. We are pissed. We are fucking broken beyond anything anyone can ever imagine. And no I don't care about YOUR feelings or if you think I should speak kinder or think of others or I have grieved long enough or I should be happy they aren't suffering and are with whatever belief YOU have. It's about US and OUR CHILD who is no longer with us, who suffered and died after a braver fight than you can ever imagine or conceive. Your thoughts on his death don't matter and they don't make me feel better. Nothing will. Nothing needs to be said because nothing will touch us or make a difference. Your thoughts that make light of his death diminish the life he did lead and the love he had for living. You want to know what to say to a grieving mother? Nothing. Instead do something. Provide a meal. Provide company. Be there if they want to talk, but don't impart your beliefs on it. Let her vent. Let her scream. Let her cry. Get involved. Do something. If you are going to say something, any comment related to a positive comment regarding death based on your religion is not helpful and actually more detrimental than saying nothing. Or that they aren't suffering anymore and how that must comfort us. No, it's not fucking comforting. He should be here, better and living the life he loved. 

Death is not beautiful. It's not a fairy tale. To you it's not real so you visualize something to comfort yourself but it doesn't comfort the mother who held her child until the last heart beat after watching them suffering for hours, days, months and/or years. Your visualization of what you think death is or was is not our reality. The reality that keeps us up at night, haunts our dreams and become our waking nightmare. Your visualization of what death is doesn't stop our tears from falling and the sadness that follows us day in and day out. Your visualization of what death is doesn't stop the emptiness we now live with that makes us think about ending our own life to stop the pain. Your visualization of what death not reality or even close to it and not comforting for even a second. 

Death is not beautiful. Death is not awesome. Death is not a positive thing in any way, shape or form. And telling a grieving mother who held their child through the end of their life, after fighting for their life and watching them suffer and bravely make it as long as they could, demeans them and their child and the life they lived. We should be sad beyond any sadness ever known, angry beyond any anger we've ever felt before and feel a heart break and soul tearing that nothing will ever heal or be fixed. Because that IS what the death of a child causes. 

So please, for grieving mothers everywhere, stop saying death is beautiful or something positive. It's not the loss of a parent, spouse, sibling, friend or any other kind of loss. The loss of a child is unlike anything anyone can ever imagine and the pain that comes from such a loss in unimaginable and known as the greatest pain any human being can feel. That is death. It's horrific, heart breaking, sad, angry, devastating, excruciating, crippling, torturous, agonizing and not something a parent comes back from. 

Death is not beautiful. My child's life is beautiful. His smile was infectious and his wonderment for the world, the most joyful thing I've ever seen in my life. He was brave through the end and handled his illness with more grace and joy than most people can ever imagine. Most of all he lived and loved his life and didn't want it to end and had a heart stronger than anything this world could throw at him. 

Death is not beautiful. My child's life is beautiful. That's what should be celebrated and remembered. 

Wednesday, September 14, 2016

When he can't tell me

Originally posted Sept 14th, 2015

What’s it like having a medically fragile child who can’t tell you his symptoms or what his body is feeling?

You hold your breath. You check him over every day for any sign of illness, injury and you hope you find nothing. When there is an injury or illness, you hold you breath. You treat it and hope it doesn’t spread. You keep the dark thoughts in the back of your mind from entering your conscious mind. You pray the doctors are right in their diagnosis and are doing the right thing.

You spend a lot of time researching. And hoping. Hoping something will add up. Hoping the symptoms will come together and make sense.

You spend a lot time teaching. Teaching the language of pain. Hoping he will understand and be able to start telling you. And knowing how hard it is to teach your child the different types of pain. And silently crying on the inside when he does tell you the pain he’s in. Knowing every day he’s having pounding headaches and he’s telling you it feels like sharp knifes.

Then you call doctors. You research. You try to put the pieces together. Treatment begins and you hold your breath. You hope it’s the right thing. But you prepare for it if it’s not. 

Sometimes you have to protect your child instead of being able to hug and kiss them. This may be one of the hardest things. When your job just becomes protecting and keeping him from hurting himself because the pain inside himself is too great, you often weep at night for the choices you must make. You just want to hug him and tell him it will be OK and you will make it better. Nothing breaks your heart more than watching him go through this. You feel helpless and try to stay calm and keep searching for answers. 

It’s one thing to be medically fragile, but it’s another thing to not be able to explain your symptoms. Everything is locked up inside his body, and you feel like you have to be a behavior detective to figure out what the symptoms are and the cause of those symptoms. It’s a vicious circle. Through it all, you hold your breath. You love harder than most people can imagine because you never know what the next moment will bring. Will there be a dimple smile and tears of happiness or will it be cries of pain?

So you are often holding your breath. And loving. Loving harder than you ever thought imaginable. And when you hug, you hug deeper, stronger and longer than you knew was possible. And you live, live a fuller life than you ever imagined and cherish each moment your child is well and happy and smiling. 

And you say I love you. Always. As much as possible. So he will always know your love is there and never wavering. 

“When they ask how far love goes, when my job is done, you’ll be the one who knows.” — Dar Williams.

Friday, August 12, 2016

Three Months to Finally Tell About Kreed's Brave Fight to Live

(Kreed proposing to his favorite girl)

A lot of people have asked over the last three months what Kreed had and what he died of. The answer is as complicated as his life was. Nothing with Kreed was every simple or easy. Neither was his death. 

When we brought Kreed into the Children's Hospital at Denver, Kreed was already dying, just no one knew it. By the time we brought him to the hospital, it was too late. He was starting his three month decent toward his death. It felt like a tidal wave had hit our life and Kreed was caught in the undertow. Never in those three months did I think we were losing him until the day he stopped breathing on May 8th, 2016, Mother's Day, about four days before his heart stopped beating. 

Kreed has been sick with odd things his entire life. Sometime later I will go in more depth. What's important for his diagnosis is the fact that he had megaloblastic anemia. Combined with developmental disabilities, peripheral neuropathy and an immune deficiency. Those four things led doctors to suspect that Kreed might have a biochemical imbalance, a metabolic condition. They ran one simple blood test. A test for about $90 we could have known something was very wrong with Kreed. That test came back high and it told doctors he had one of 14 colbalimum and folate disorders. They ran one more test and narrowed it down to 5.  Each equally as rare. One disorder there are 14 cases. Another there are 48 cases. The one they suspected there were only 5 cases. All that had to be tested was his homocysteine. An elevated homocysteine level tells doctors that your body has a breakdown in the way your body is processing B12 and folate and there is a breakdown somewhere along the way. It's a remethylation defect. Further tests revealed Kreed had very low folate in his cerebral spinal fluid which was the cause of a lot of his issues including nonverbal and developmental disabilities. A lot of damage occurred but it was biochemical damage not seen on an MRI. 

But flashback maybe four to five years ago, Carie and I were going through his labs and noticed he had this megaloblastic anemia in every single lab of his from doctors. We flat asked his geneticist at the time (in Phoenix) what those labs meant and why they were elevated and he just said Kreed has megaloblastic anemia- he just has large red blood cells, nothing to worry about. 

Nothing to worry about as we sit with our child buried below ground. Nothing to worry about as he lay dying in our arms. Nothing to worry about as he has suffered for years and years with pain and breathing difficulties unbeknownst to us. Nothing to worry about. I will never worry about something more. 

Flash forward and we spent 15 minutes with the metabolic doctors in Denver and brought them our files of labs and doctors notes and they saw the pattern and ran the test the next day and just like that they knew. 

With so few cases, it was hard to pin point which disorder he had and what it would mean. Kreed still presented somewhat atypical. 

When we brought Kreed to Denver it  was because he stopped walking and his legs were in massive pain. What we didn't know was his nerves that ran from his brain stem to his lungs were short circuiting. That caused him to hypoventilate both awake and asleep. He had become hypoxic throughout the day starting in December but that's just when we decided to start testing him more regularly. Likely it started well before that. We also didn't know that the chemoreceptors in his brain stem were irreparably damaged. What caused that damage, we don't know exactly. 

(Kreed held his legs up for hours and hours due to pain)
(First night at Children's, he was unable to walk and in pain)
(He continued to be in so much pain in the hospital- his oxygen was also dropping)

Chemoreceptors are what keeps your body in a state of homoestasis. It keeps your ph level in your body stable and monitors the oxygen and carbon dioxide in your body. A normal body will begin to hyperventilate when carbon dioxide rises in the blood. It's a protective factor that your body employs. Kreed did not have this protective factor. This is why he went into respiratory acidosis three times over the three months. It's now also believed that he went into respiratory acidosis way more than we ever knew. 

Rewind to 2014 and we admitted Kreed to a hospital at the end of January. He was laying on the ground barely conscious. We have videos that shows it perfectly. We spent one week there- seizures were negative. Heart was fine except fast heart rate. They didn't check anything else. The main pediatrician said we were overreacting and it was just autism. Just autism. Autism doesn't cause a child to lay on the ground passed out every single day barely able to get. Doesn't cause his heart rate to soar to 190 just standing up. Doesn't cause his legs to look bright red and his feet to curl and have difficulty walking. Autism doesn't cause tremors in his hands and loss of bathroom functioning. We were never more horrified with this doctor. Blood gas was never checked. Despite the fact over night his oxygen levels fell. Every night. He got blow by oxygen. They didn't give him a sleep study then. We waited for weeks once we got out. We had to call them and tell them that we still didn't have a sleep study. We showed up for another outpatient procedure (nerve test) and the anethesiasolgist wouldn't put Kreed under without seeing a cardiologist and sleep study. Within a month he got his sleep apnea diagnosis, POTS and neuropathy. Blood gasses were never checked or mentioned despite the fact that Kreed needed ventilation at night for no reason. Nothing on brain MRI. No indication of why he needed nighttime ventilation. And they never checked his oxygen again after the study. For a year. I called and told them he looked blue. I could tell his oxygen was falling at night. They said if I was that concerned to go to the ER. I begged for another study and to match his sleep hours. They agreed to the study but didn't change the hours. Despite Kreed going to bed at 3am on average, the did the study only to 5am. Kreed never slept that night. I still told them his oxygen was low can't they just give us a monitor at home and supplemental oxygen. They said there no need for any of it. 
(This is NOT autism...its hypercapnia, POTS, neuropathy and sleep apnea- all undiagnosed at the time). 

We moved to Colorado and Kreed was inpatient for surgery and they immediately noticed he needed oxygen with sleep. Phoenix didn't. And he was hypoxic for an entire year. 365 days of not getting enough oxygen at night. 
(Finally confirmation that even with Bipap Kreed's oxygen falls)

You know when Kreed's death spiral began? January 2014 when the doctor told us when we were afraid Kreed might die that we were over-reacting. Two years later we buried our child. So yes. Yes we were concerned for our child. 

Fast forward to February 2016. Kreed couldn't walk. His legs were in immense pain. He had difficulty keeping his Bipap on at night. Probably due to high co2 levels. He was worked up, decided his neuropathy was flared up. Seemed to be doing better after two weeks, we were thrilled. He had his homocysteine test and the metabolic docs began their work up so we also had a looming new diagnosis that would hopefully change his life. He started some early treatments. He was hypoxic on and off so we just used supplemental oxygen more.  
(He loved life even with extra oxygen) 

Six days later Kreed suffered a devastating seizure outside in our back yard. He had a full tonic-clonic seizure and I sat there as Kreed went lifeless in my arms and his heart stopped. I started rescue breaths and hit his chest. He gasped for air and came back to us. We thought his epilepsy had gotten worse. Three months later experts agree his co2 likely rose to 100% and triggered a seizure. Back to the hospital we went for another week to change seizure Meds, stop his new status migraine with painful DHE treatments and continue his metabolic work up. 
(DHE treatments with his favorite nurse)

He got better. We went home for several weeks. Things were difficult as his new seizure Meds caused severe issues. We switched and he got better. Then we noticed his oxygen was dropping a lot. At night. During the day.  A blizzard was coming. We took him to the urgent care connected to the hospital. His oxygen continued to be difficult. They didn't know what was wrong. They ambulanced him to Denver. We stayed three days, got antibiotics, he seemed better and oxygen improved. We took him home happy. Four days later, his oxygen continued to drop. He wasn't better. We drove to Denver and they admitted him again. This time for 36 days. This was Kreed's true spiral. 

His oxygen was always teetering on the edge. He had every test known to man. So much came back normal. But he couldn't breathe. A trach was talked about, but Kreed would never survive that. Then they thought pain was causing his breathing issues. He went on better pain regime. He seemed to get better. Then they tested his blood gas. Co2 was 70% in his body. We went to the ICU. He was ventilated with his Bipap for 24 hours and got better. Then for two weeks people missed the fact that he wasn't wearing his Bipap at night like he should have been until I caught it and added up his symptoms. I begged them for three days to check his blood gas. Things didn't make sense. He wasn't doing well but lungs were fine. On the third day they tested it. Then we grabbed Kreed and took him downstairs for some snacks on his scooter. Smiling. Excited for his food. His CA got a call that we had to immediately return to his room. I turned to them and said I bet you he has high co2. The doctors met us with frowns and started apologizing. His Co2 was 91. 91. 91 was his CO2. Back to the ICU he went. Ventilated for 24 hours and back to normal. They checked it twice a day for several days, he was right on target, wearing his Bipap. His oxygen levels improved. Still weren't great, but okay enough. He seemed awesome. For a whole week. We did everything we could at the hospital. We had as much fun as humanly possible. He was so joyful. So happy. It was like a bright light of sun shined down on Kreed. He seemed the healthiest he had ever been. I hadn't seen these smiles in years. I hadn't seen him swing and do his scooter in so so long. Never did I think that this was his energy burst before a sharp decline. But it was. 
(His carbon dioxide level is 91 here. He is maybe hours from a seizure and possible death- this is why he was so complicated- do his favorite activities and he didn't care)

So we took him home. He did one more night at the hospital. He had some difficulty wanting to wear his Bipap but he did for five hours. So we went home. Things weren't great when we first went home. He had several rages. I did not have him hooked up to monitors at first. When we did, he was dipping low. So we gave him his Bipap on and off all day. He seemed to be in pain so we gave him some pain Meds and his medical cannabis. He fell asleep at 10pm. Exhausted we went to sleep across from him. We had him hooked up to his monitors and a camera on his monitors so we could see. Carie and I woke at midnight because his monitors were going off. 

And for the rest of the night we were dumbfounded because at times Kreed wouldn't breathe at all, sometimes for 20 seconds or more. His oxygen would stay crashed even on five liters of oxygen, the most we had at home. It was the longest night of our life at the time as we were exhausted yet trying to make sense of what was happening. Finally he fell asleep in the wee hours of the morning and continued to sleep solid until late morning. What we didn't know was he had 68 apnea events an hour that night. His decent had started but we didn't know. Didn't think to pull his data from that night from his Bipap until later in the day. 

It was Mother's Day the next day so I wanted to take him shopping for Carie. I took his monitor and decided to watch him continuously. And continuously his monitor went off. Oxygen at 75, then 83, then back up to 95. I took him to Five Guys and he happily ate French fries while his monitor silently beeped at me the entire time. Back in the car I gave him supplemental oxygen while we drove around. Next up was a hair cut. He did amazing as we did this, then back in car with oxygen. Finally we decided to go into Walmart and get a card for Mother's Day. We walked in, Kreed seemed to start to panic a little so I tried to comfort him and we walked over to the cards. He scanned a bunch and I questioned him on his device as to which one he wanted. He picked one out. Then we started to discuss gifts and all the sudden Kreed broke into complete panic. You could see it in his eyes- complete panic.  I tell him we will go to the car. 
(Oxygen every time we got in the car from a store)

Once in the car, I get a reading on his oxygen - 65%. Ugh. I put on his oxygen and we keep it on. At times he needed up to 10-15 liters of oxygen and other times 2. It varied so much. We decided to drive home. Once at home we hook him up to the pulse ox machine and watch him. His oxygen continued to fall. We hooked up a second machine to make sure they matched. Our house rang out with the sound of nonstop alarms. Carie and I just kind of look at each other and Carie starts packing. She saw the look in my eyes. I don't want to go back. That's all I can think. I don't want to go back, we had been home a total of one whole day. Then I turn to Kreed and he looks so bad and suffering so much. He's upset and alarms go off nonstop. 

Kreed's brother and his wife also come home from work and sees the alarms going off on Kreed and his irritable mood. He also thinks we should go. He also asks if he can come because if Kreed loses it, he will be hard to keep oxygen on. I agree. 

We pack up and hit the car with Kreed. We decide to go to Childrens Colorado urgent care rather than the drive to Denver. We just felt to unsafe and during our drive down the mountain, Kreed goes in and out of consciousness. We arrive at the urgent care center and they assemble a team for him, as they know he can be difficult. They immediately check his blood gas, as that would decide if we go to denver or not and what's wrong. 
(Kreed continued to be in and out of consciousness on the drive to the Children's Urgent Care)

Ten minute later the nurse in and says, it's time to go to Denver. I ask him what his level is...his carbon dioxide rose to 96%. Kreed was suffocating. A helicopter transfer or icu ambulance was discussed. Meanwhile Kreed finally lost it and his brother and I had to restrain Kreed. Various medications and shots were given as Kreed began to sweat and fight us and throw up. It was a mess. 

The icu ambulance finally arrives and we are off to Denver. His Bipap is put on to ventilate him and hope to get his levels back to normal. 

By the time we arrive straight to his icu room and being ventilated for an hour, Kreed's levels began to go back to normal. He was in such severe respiratory acidosis. This current episode took its toll on his body. He fought and was exhausted. In the early hours of the morning his levels were back to normal and he could take his mask off. It felt like a whirlwind- from swinging and having a blast at him to the icu in less than 24 hours. What was happening to our baby? 
(Ventilated with his Bipap in the ICU)

Morning came and we all relaxed somewhat as Kreed seemed to be in better spirits and eating breakfast. Doctors told us we would definitely be staying in the icu for a while to figure out why this keeps happening. Another EEG was ordered as well to help see if seizures were causing oxygen issues. Kreed's stats still varied greatly. 

In the late morning I stepped out to talk to his icu nurse about everything. While we were filling out paperwork, we kept looking at Kreed through the glass- he looked grey and just ill. We kept saying how bad he seemed to look, but all his stats seemed normal enough. We even ordered a blood gas that came back normal. 

At about noon Kreed requested his Bipap and it seemed he wanted to take a nap. We put his Bipap on and thought it was great he wanted a nap after not sleeping all night and so much fighting.  We all relaxed for a bit. 

At 12:30pm the EEG tech came to put Kreed's leads on for his test. We would have to take his Bipap off to do so. I walked in and decided to take control of his blow by oxygen in case he had difficulty (his oxygen always drops when sleeping). 

We slip his Bipap off. Maybe within a three second period Kreed's oxygen plunges- 80, 75- we move the blow by closer. 70-65- the nurse yells to seal the blow by oxygen around his mouth. 60, 55...45. The nurse yells that he is not breathing, grabs the oxygen from me and hits the code blue. Kreed's room is instantly filled with all available staff on the floor and they have bagged Kreed and giving him full breaths. We stand in silence while the nurses and doctors continue to bag him, stop and wait for a breath and continue bagging when there are no breaths. Kreed was not conscious or breathing. The main icu Doctor turns to me and tells us that we need to leave the room because they have to intubate him. We turn in silence and go wait outside the unit, stunned and shocked and heart broken. Our son was not breathing. He wasn't there. Wasn't conscious. Our boy was "gone" for the moment. 

That morning, Mother's Day, will forever be the day we last saw Kreed breathing on his own, moving, fully conscious and aware.

For the next 36 hours Kreed continued to take no breaths on his own and did not regain consciousness.  Tests were run. Meetings were held. Doctors were talked too. 
(Still unconscious and ventilated 24 hours later)

At the 24 hour mark Kreed had double pneumonia, three virus's and sepsis. 

Finally he began to stir and become conscious after a day and a half, but he still did not breathe and he was in so much pain we had to sedate him with pain medication. Kreed was hurting and out of breath. Anytime he would come to, he would start to fight again, his eyes were unclear and there was nothing but pain and confusion. 

Later that night he reacted during suctioning and pulled his tube out. He had to immediately be bagged and a Bipap with a back up rate was put on him- essentially the Bipap was breathing for him. 
(Kreed's best guys- Ty and Bill comforting him through the pain- Bill flew in the middle of the night from Arizona to be by his side)

He slept mostly on the Bipap and only a few breaths a minute were his own. Not enough to sustain life. Kreed simply lost the ability to breathe on his own. We were able to get him to drink a few sips of water and a couple of chips on the third day, but by the fourth, his swallow reflex was gone and he could no longer swallow. One by one Kreed's reflexes were shutting down as his nerves shut down. 

By the fourth day, his kidneys no longer worked or his bowels. So no breathing, no swallowing, no kidneys and no bowels. Every system in his body was shutting down one by one. And he could not breathe. We couldn't even draw blood from him because his blood was too thick to come out. 
(One last hand hold with his favorite people)

Suppose for a second that Kreed could have overcome his illnesses and body shutting down by some miracle...he would have been left with a trach for breathing, a tube for feedings (no more food by mouth since he couldn't swallow), wheelchair bound and an ostomy bag and most likely a kidney transplant due to lack of oxygen to his kidneys causing too much damage. He would have never been Kreed as we knew him, but a boy who was gone, sedated most of the time from pain and unable to do anything he used to enjoy. But he would have never lived through future procedures. He couldn't even live through the infections raging through his body, and every system in his body shutting down. His genetic defect was terminal. There was no treatment in the world that was going to save him. Our Kreed was gone. He was gone really on Mother's Day when he stopped breathing and lost consciousness for 36 hours. 

Eventually at 12:30pm on May 12th, Kreed's body could no longer sustain life and he crashed again and we would not get him back. He could not breathe and his heart finally gave out at 3:29pm. Our brave boy fought his last battle and lived his life to the fullest. 

Three months later we are still working on answers. He has a genetic defect in the MTHFD 1 gene. Super rare. He is 1 in 7 billion. The only person in the world with that particular mutation. Five other people have a mutation in that gene but not his particular one (8 over all, three died). His gene and skin cells are continuing to be studied to find out exactly how those defects have affected his cells and ultimately what happened to his body. 

We do know he suffered nerve death all over his body and without nerves to send signals to various parts of the body, it shuts down. His nerves from brain to lungs were damaged which also affected his blood sugar and everything else. The strongest part of his body was his heart. It beat so strong and for so long even after it shouldn't have been beating any longer with all the damage his body had incurred. I'm not surprised because that's how Kreed lived his life- with his heart, his love, his joy. 

While for so many his death was a surprise, it was to us only up until Mother's Day May 8th. It was in that moment that we knew Kreed was not going to survive what was wrong with his body. But nothing will ever prepare you for the day a child's heart stops beating. 

It's taken three months to write this, process this and re-live those three months, and that last week. We had discussions about Kreed and him not making it to a full term of life at various times, but nothing prepares you for the reality. Watching your boy suffer for his entire life until the end. 

But through it all, the pain, the suffering, the frustrations and complicated life he lived, he truly loved life. He truly lived life. We tried to give him as epic of a life we could. Nothing was out of our reach and we lived with no limits- never knowing there was a limit on his life. Even in the last two weeks of his life- he lived without limits and was so happy and full of life and sharing his light, joy and happiness with so many people- whose lives have now been forever changed, just by knowing our boy for a few months. The outpouring of love for our boy in the days, weeks and months following his death have been incredible. We never knew the impact sharing our story would have and the impact of this one boy who loved to live his life and teach others there were no limits to the things they could do and accomplish. 

And now nothing compares to our utter sadness. Our soul death. Our emptiness. The joy being extinguished from our life and we are left to pick up the pieces from a shattered life and live a life we never wanted. We prepared to take care of him for the duration and were looking forward to giving him even more life experiences. All of that was ripped away from us without our consent and without knowing. We sit in an empty house devoid of his sounds and hopping and happiness. We drive in an empty car without his rocking to music. We live in an empty life missing our joy and happiness. We lived with a truly amazing boy and human being and now our life seems cold, removed, empty and joyless. He brought joy to everything and every second counted. Now time drags on with every second tick screaming in our heads as another second ticks by without him. A life without him. A life without joy. 

The best we can hope for is that he continues to change lives. And that somehow, someway, we will find a meaning to life- although that seems impossible now because he was our meaning and our everything and life seems so pointless without him and his celebration of life. 

So now you know. On the three month anniversary of his passing, these were the events that so many didn't know about because we never knew we would be telling the story of his end. We always thought we would solve his mystery and give him this amazing, epic life. Instead we are solving the mystery of his death and hoping somehow it helps others, even though as it stands now he is alone with his genetic mutation. Kreed was always unique, we just never knew how unique. 

To you all, our final wish has always been to live in Kreed's way. 

One life. No limits.  

Monday, August 1, 2016

Staying in Grief

So many people say they understand or want to be there for you, but the truth is, unless you have actually lost a child- you don't understand. Until you've lost a very special needs child that needed you every second of every day, you really don't understand. 

Other people or family members didn't live this life with Kreed. We did. Every second of every day. Other people get to grieve for Kreed and then it's over. Their lives aren't filled with emptiness and heartache. Our grief comes over and over again every day we wake up from sleep and feel the pain all over again. Our grief begins every morning and lasts all day until we fall into unconsciousness where then the grief haunts our dreams. 

So many people then walk out of lives because they don't understand. The soul death we now face, missing our joy and happiness that was Kreed. In the months following a death eventually the texts and calls slow, the check in's go away and life returns to normal for everyone else. But not us. The pain is just as great, if not greater almost three months later. 
We still wake up with a hole in our life. We drive in a car without Kreed, we live in a house without him and have to go about our life with out the single greatest joy of our life. We would gladly take back the sleepless nights, and spending every second with him. To feel him again, touch him, smell him. We live with that hole, no one else does. Not even close.
And we realize no one else realizes the impact his grief still has on us. And we find out who the real people in our lives are, even if we don't respond or can't speak, they keep trying to show us they are there. 

You don't always have to say the right thing or know what to do. Because the reality is no one does. No one could possibly know this pain and know what to do. Our grief is long and deep and keeps us from functioning most days. Most days we are lucky we get up and breathe much less do anything else. 
People, especially close friends and family who dismiss our grief or ignore us or "don't know what to say" so they say nothing and leave us to navigate the grief on our own are only making things harder. They do not understand because they are not living it, they do not know what it feels like to have a child die. To turn their back on us during this confusing, hard, gut wrenching time makes it feel like we not only have lost a child, but them as well. It isn't fair and it certainly doesn't make the pain any easier knowing they have chosen to walk out rather than be there for us or to offer their help or just to let you know that we haven't been forgotten. Our child is gone and there is nothing what so ever we can do to change that, but I guarantee we know who is there for us and who has walked out, hoping if they ignore our grief long enough maybe it'll finally stop and we will get on with our lives and be back to normal. 

So in the end we won't be able to change our child being gone, but we will be able to change who we allow back in our lives. Because those people will eventually try to walk back in once they think the coast is clear, and we should be getting on with our lives and being back to normal, and guess what? The Coast will NEVER be clear. We will have moved on from those people who didn't need us then and who we certainly don't need now because news flash...there is never getting back to normal after a child has died or moving on, there is only learning how to live a new kind of normal and moving on in spite of the pain and grief. We will NEVER be the same. Some people can handle this fact, and some people choose not to. To those people I say goodbye, as you go live your normal life and move on and live your life, and it is too bad you could never understand why that wasn't possible for us. We've been through too much to care anymore, and we've changed too much to notice.

But to the ones that continue to check in, talk to us, send funny pictures to try and put a smile on our face or annoy us with texts or messages- thank you. Even if we don't respond, even if it seems like we ignore everything and everyone, it's the little things that count. Some days we just don't have the energy to say anything or do anything more than breathe or exist. Just know that every day we experience that grief and some days more acutely than others- if we find a piece of him or a memory suddenly comes upon us unexpectedly. Our life is lost right now, unsure of anything we know to do- because we lived for him and every second was dedicated to him happily. He was our joy, our happiness and now we must find a different sort of life. That takes effort and willingness that some days are just too tough to muster. 

Our grief is every second of every day just as our life was for him. And people drop out of people who grieve lives- maybe because they don't understand the depth of pain or they don't know what to do with someone who only knows how to get up and breathe because the pain is so great. Their life goes on, ours do not. But some try no matter what and you figure out who will be there no matter what. Even if you can't understand another's pain or even come close to understanding the depth of it, it's possible to be continue to try and be present in their life. 
Life is short. You don't know what will take you or when that time will be. And when kids are taken from you, you are set adrift without a life raft and most of the time you're drowning in that grief. You never know what will be your could just be someone that sends funny messages or tells you that they are there even if you say nothing. Or the friend that says "shit I can't imagine what your feeling." At least we are seen. The depth of our pain may never been seen or felt, but our grief can, we can. 

We get up and exist every day and thank you to those who acknowledge the fact that we get up and exist and know that we are still here, even if all we can do is breathe. 

Tuesday, July 12, 2016

Two Months

"I don't believe time heals. I don't want it to. If I heal, doesn't that mean I've accepted the world without (him)?"
- Jandy Nelson

Two months. Two months without our sweet boy. Without his smile. Laugh. Sounds. Smell. Voice. 
Two months without being able to grocery shopping with him, driving in the car, jamming out to music, talking with his device, watching movies with, swinging or riding his scooter. 

It's summer time now. The summer I dreamed we would explore the entire state and have epic adventures. We always thought he would get better. That he would get through this and shine even better. We never dreamed that he would stop breathing. That he wouldn't recover from his lack of breath. That he would die in our arms. Nothing. Nothing in this world prepares you for this. 

The agony. Guilt. The way your mind replays every second of the end and you keep thinking what maybe we should have done or could have done. And always come to the same conclusion that our boy was gone. The sadness. Grief. Emptiness. The death of the only life we've known. The death of our own souls. The way our hearts stopped when his stopped. Except we still look like we're living, breathing. 

The way it hurts by breathing, knowing he was out of breath and it took him from us. It hurts to get out of bed. To do anything... because we can and he can't. The guilt. Cuts us straight through like a hot knife. Searing. Burning. Exquisite pain. 

When you lose a child, the act of living is the most painful existence. The grief comes in waves, at times tidal waves as we drown in the swirl of emotions: guilt, sadness, emptiness, agony. 

Every second of every day we live in excruciating pain. All you want is for the pain to end but it won't. Because every morning when we wake up, Kreed is still gone. He's still buried in the ground away from us and we don't get to call his name and see his dimpled face. We walk around ghosts of our former selves. In a life that doesn't feel like ours. In a life we didn't agree to. A life we didn't expect. And Kreed left his life unfinished. 

We have to pick up the pieces...but all the pieces won't be there. Our life will always be empty. A shell of what it once was. Kreed's passing took the joy. Two months. Two months without joy. Unconditional love. Without the main part of our existence. With a life full of complete and utter emptiness. 

Two months without our buddy. Two months. 

Sunday, July 10, 2016

Today I wish...

Today. Today I wish I wasn't a behavior analyst (BCBA). Today I wish I hadn't worked in the special needs field for fifteen years. I wish I wasn't an AAC specialist. I wish I wasn't a specialist in working with medically fragile kids. Or kids with autism. 

Two months ago I was going to stop my career and be with Kreed full time because he required two people at all times and Colorado will pay for one to be a caregiver. I was going to be able to have epic adventures with my boy and continue to give him an amazing life. On May 12th that ended and the day would come soon that I would have to return to my former life and not be one of Kreed's moms. But just people's behavior analyst. It seems so cold now. Removed. Different. 
All I can think of is what I could still be teaching Kreed. The epic life we could still be having. Filming his progress, finding new ways to help him be successful and finding new ways to feel joy. Now I have to help other people's children. I have to watch them grow and learn and achieve success. I cry the entire way to work and the entire way back. Because that should have been us. That should have been me and Kreed always. His life was unfinished and my job, my work, my parenting of Kreed is also unfinished. I never wanted to be anything other than Kreed's mom once I became one of his mom's. There was no more rewarding job on earth and nothing I would rather do. 
But it's not. And I have to go back to a career and a job without him. Feeling empty. Different. 

The only thing that saves me is coming home to Carie who shared my grief, on a much larger level, and we can be together in that emptiness and try to find our life again. But there will always be something missing. 

Today. Today I wish I wasn't a behavior analyst. Doesn't mean I'm not good at my job, because I am very good. Just means it's one of the most difficult parts of our life now that he's gone. 

Empty. Cold. Different. Our lives are all unfinished. 

Wednesday, June 29, 2016


Agony. Extreme and generally prolonged pain; intense physical or mental suffering. Agony. 

That's the feeling when you lose a child. Pure agony in every sense of the word. The mental is all costuming and anxiety and depression sets in regardless of your mental toughness. How can it not? When you lose a special needs child that is your entire world, every thought was devoted to them. When they are gone, suddenly the void because vast and you don't even know what to think. The agony is physical because it hurts every part of your body. It's in your bones. Muscles. Everything. It feels like you've been stabbed in the heart over and over and over again and it's as if you are bleeding all over your life. How is there still a life when your reason for being is just gone in the blink of an eye? Every night you go to bed with the insurmountable loss and wake up realizing you lost your child all over again. The loss never ends. 

Agony. It's more than mental and more than physical. It's soul crushing. A piece of your soul is literally ripped away from you once they take their last breath. It doesn't matter if one day if you feel like you are healing, you will never ever be the same. I feel this to great magnitude and I know Carie must feel it so much more vastly having given birth to Kreed and raised him virtually alone for the first twelve years. He was life. He was our life, our world, our heart. He was this soul of the family. Agony. 
I still post his pictures and videos, but I have yet to watch a video. I know what's on them simply from memory, but I cannot rewatch them and know this will never be again. We will never see another hop, dimple smile, vocal stim, or feel his touch or tend to his needs. We imagined so many more years with Kreed and envisioned a life with him filled with so much joy, despite his physical pain. We always thought he was going to get better and better days were ahead. But they weren't. It was the end instead. This is why I tell people to never waste a moment. Never stop and think there is always tomorrow to do this. Another week, month or year. Because the truth is we don't know. Kreed forced us to live in the moment and I'm so grateful he did because in the end we did so much more with him as a result. 

Yet...that only magnifies the agony of not having another moment and having to live every moment for the rest of our lives without him. 

We are filled with agony. Pain. Sadness. Guilt. Wanting. Heartache. Anger. The loss of a special needs child is a special kind of agony as you are left so empty feeling every day. This is our grief, this is our daily weight of the world and our daily sadness. The continuation of a story with a tragic ending and you wonder how anything in this world will ever be okay again. 


Thursday, June 23, 2016

Pieces of You

We clean pieces of you...from the house, from the car, your room, your therapy room. The fridge. The pantry. I vacuumed up your chips today from the backseat of the car. It just made me stop and think that I'm cleaning pieces of you. You had those chips. They touched your hands. Your lips. Your body. As I clean I know I'm losing more pieces of you. 

I don't want to forget. I don't want to lose more pieces of you. Though I know our life must go on, it's so hard to continually say goodbye. To lose more pieces of our life together. 

One day we will have to pack up your room and let it become something else. Again, pieces of you gone. Your smell. The indent of your body in your bed. Your clothes. TV. Videos. Pillows with strands of your hair. It's feels like losing these pieces of you will make me forget. I know it's not true, but it doesn't change the feelings of it. 

We had to lose you and now over a month later we continue to find you in everything and we must say goodbye again, over and over. I know one day there won't be as many pieces of you and the tears will continue to fall. We will never forget. The most important pieces of you are inside our heart and souls. 

Pieces of you. Pieces of us. Will always be together in some way. But for now, I mourn the pieces of you we must continue to let go of.

Thursday, June 9, 2016

One Month

One month. 

It's been one month since your heart beat last. 

It's been one month since we held you in our arms. 

One month since we heard your voice. 

One month since we heard your whoops of joy. 

One month since we've seen you be pulled around on your scooter. 

One month since we had hoped you would get better and come home with us. 

One month since we had to watch you gasp for your last breath. 

One month since one nightmare ended and another began. 

One month since we began a life we never wanted to live. 
One month ago we had to say goodbye to our whole world. Twenty four hours a day, seven days a week we cared for Kreed. We took care of his medical needs, food, sleep, activities- everything. One month ago we said goodbye to our adventure buddy, our partner in crime and the epic life we lived. No one should ever EVER have to go through this kind of pain. We go through our days, and so many of them don't feel like our days. Like we are having a day when he's just with Bill giving us some respite. Every time I remember this is forever, the tears fall. I still don't even know what to do. I had the next 50 years planned with him at least, to teach, experience life and give him one hell of a life. That life wasn't supposed to end at 18. I didn't know last summer would be his last summer. Or Christmas. Or birthday. Or meal (which was Five Guys). Or swing. Or jump on the trampoline. Or night time at home with us. 
In the coming weeks I will blog more about what happened so everyone can understand. We are still trying to understand in some ways. When Kreed entered the Children's Hospital Colorado he was already dying. We just didn't know it. There was nothing the hospital could have done or didn't do to help him. It was too late by the time Kreed and I first walked in their ER. Instead, Kreed was given one hell of a three months surrounded by staff who adored him and were willing to do whatever was needed to make him happy. Kreed loved people. He loved having fun. He loved being loved. And I thank Children's for providing that love to Kreed in his final three months. 
Nothing will ever replace the emptiness we feel inside. Kreed's loss was soul crushing. He was our soul child. I don't know how you recover from that. I don't think you do. I think you learn to live with the emptiness and the hole. And not a day will ever go by that I won't think of him or miss him. 
It's been one month since we told him we loved him and he heard us. 

One month feels like too long to be without him. I don't want to know what forever feels like.