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. 

Possible Diagnosis and Updates

Kreed has been in the hospital, for the most part since February. He first presented with an inability to walk. Followed by a seizure. Followed by more raging and screaming, no sleeping and a slew of other issues. Kreed's breathing began to be affected and doctor's couldn't figure out why. We finally got a resident to think outside the box and he slowly but surely put together the specialists and got them to talk to each other. Ultimately it was decided Kreed's issues were caused from pain, which we agreed with. He was in immense, unrelenting pain. Kreed has been screaming for months in pain. It's been heart breaking to witness and be a part of. His body is constantly hurting, with activity making it worse and he's going hypoxic as a result.

Neurology came to do a larger work up and determined he most likely has Small Fiber Neuropathy along with his larger neuropathy. The small fiber neuropathy is far more painful and affects so much of the autonomic system. What they don't know is WHY he has small fiber neuropathy. It can be congenital or acquired. If it's acquired and they can find why, he will go back on IVIG. If it's congenital then it means it will continue to progress and he will continue to lose function and we are left with only controlling his symptoms and pain.

At this point in time, pain management is the focus of treatment while they work on finding the cause and can do more targeted treatment. Kreed's pain management is compounded by the vast allergies he has and adverse reactions to many. We have trialed activist for two days and both days he raged in pain. Last night in particular, we let him go around on a scooter and take a walk downstairs. Within 30 minutes of our adventure, he was in horrific pain for the next hour and a half until he got a rescue medication. He finally fell asleep in the early hours of the morning exhausted from pain and activity.

I can write all of the above and not shed a tear. But the reality is our life will never be the same. Kreed's life will never be the same. He could end up in a wheelchair for the majority of the time due to his extreme pain when walking, if they can't control it. They could find the cause and then we will have multiple IV treatments a month and hope it stops the progression. Most agree however, that Kreed's days of carefree hopping are over. We have to be vigilant over his activity levels and always be prepared for pain breakthroughs. Kreed is now a patient of chronic pain. Most normal adults have difficulty with ongoing pain and this has happened to our 18 year old active boy who doesn't understand that activity causes him massive pain. I'm trying to figure out how I can possibly explain this to him. Once he isn't in as much pain, I'm hoping we can resume home schooling and our first subject will be about the body.

Most of all, I told the doctors, we have to save his hands. He cannot lose feelings in his hands because that is how he talks. I will move heaven and earth at that point to make sure he doesn't lose his ability to use his hands to talk. Our life has become a nightmare of hospitals, doctors and pain. Our sweet boy suffers so much and it's not fair. I envisioned an active life with Kreed with many hours of hiking in Colorado and so many other activities.

I will post more later. For now, Kreed has small fiber neruopathy and they are trying to find the cause and decide on a treatment. In the meantime, at this time, Kreed cannot be active without causing himself unrelenting pain. It is unknown how long we will be in the hospital, but I would imagine another week at the minimum.