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. 

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. 

Agony

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. 

Agony. 

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.

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. 

A Life Unfinished

Never Alone- Lady Antebellum
Kreed went on every adventure with me for the last six years. There wasn't any place I ever thought about not taking him. Sure, he had meltdowns, rages, attitude and didn't always understand safe behavior... But I just took that as opportunities to teach him. We were never going to keep Kreed cooped up inside because we were afraid. Kreed taught us not to be afraid. He wanted to experience nature in all its forms and received pure contentment, peace and joy from those moments. Just because it was hard didn't mean we didn't do it.

We took a road trip to Aspen the last time he almost didn't make it and that was hard. We ended up not being able to pitch a tent because it was so crowded and Kreed didn't quite understand. So we drove around until we found a secluded spot and got comfy in the car. It wasn't exactly easy that night but we made it through all the stronger. 

The next day, we set out on an adventure through Aspen and Independence pass, and the Twin Lakes. Wherever I wanted to stop he was game and he loved the water and wind so much. Even though even then he was still so sick, he had joyful moments and was quite the adventurer. We were never without tough times due to communication and behavior, but you see- it simply doesn't matter. Because the moments we captured were always worth more than what it took to get there. We were always unafraid to try new things with Kreed- if it didn't work out it didn't, and taught me better what to do. We were supposed to take another trip to Aspen this summer when he got better and experience nature there again. I wish I had known that would have been our only trip, I would have stayed longer and enjoyed more. 

Kreed was never alone because we were always with him, even to the very end. I used to sing this song to him never knowing how true it was. 

We lost him too fast. Too soon. I wasn't ready. I wasn't ready for our adventure to end. And now all I'm left with our these memories. And it makes me thankful that I captured all these memories and that we stood unafraid to take him on all these adventures. With love, patience and strength Kreed showed us anything was possible. We dedicated our life to him because that's what he deserved. To live a full adventure filled life of love and happiness. His life was so hard from not being able to communicate, his body always breaking down on him, and every day daily tasks being so difficult, why wouldn't I want to make it the best it possibly could be. 

And now I sit here with tears rolling down, wondering how Kreed left this life unfinished. And wondering how I will ever get over that and the emptiness my heart and soul now feels. 

But I can say today and every day after that he was never, ever alone and we were so happy to be by his side. 

The rest of our photos from Aspen road trip 2015:

Starting out

Beautiful 

Found a French fry place!

The next morning

Some everything free breakfast 

A beautiful walk

A stop on Independence Pass with a waterfall. His favorite area. 

Then we stopped by a river

And beautiful Twin Lakes, he was excited before we even got down to the lakes. 

He loved this trip so much. 

Don't wait until it's too late to have grand adventures with your kids. Autism isn't a reason to not make this life epic. We don't know how much time we have with our kids and I only wish I had known my time was short. Teach. Love. Have adventures and show them how much beauty is truly in this world. We at least know we tried to have Kreed experience as much of this joyous life as possible. His life will always remain unfinished as we had so many more adventures to take. It's been two weeks today and the pain still hurts as much or more as it did two weeks ago. 

You were never alone Kreed, and I hope you thought you lived an amazing life and we gave everything we had to you. We love always and forever.