Saturday, January 17, 2015

Snapshots into Sophie's World

Last year I met a young woman through Facebook named Sophie. She lives in the UK and we live in the US. Although we are thousands of miles apart, Sophie has taught me far more than any therapist ever has about Kreed. Sophie uses a communication device as well and can type out her thoughts. She has given me insights into Kreed that has allowed me to teach him so much better and understand him so much better. Sophie's words can change the thinking of everyone who thinks that those who don't use their natural voice don't have something to say. She spent years unable to speak or be heard and so many ignored her. Even today, although she uses a device to communicate, people are quick to dismiss her. It's people like Sophie, and hopefully one day Kreed, that will finally make people realize that nonverbal doesn't mean anything other than they have a different way to communicate. 
I asked Sophie if she would write a bit about her experiences. So without further adieu, here are a few Snapshots into Sophie's World. 
Sensory overload 
Sensory overload is the worst feeling in the world!!! I get it when I see too many people walking past me or if I hear too many noises at one time. For example in a room of people talking my brain tunes into everyone else’s conversation and I struggle to filter the voices out and listen to the carer I am with it is so frustrating and I have to be re directed to listening to my carer by them saying my name or tapping me. When I get sensory overload it is like I have 100 buzzy bees in my head and my head hurts a lot and feels like it will go bang like a balloon it is the most uncomfortable thing ever!!! I have to try and bang my head on things to try and relieve the pressure in my head to try and stop the feeling. While I am experiencing sensory overload I find it very hard to talk or make any sentences as my speech just won’t come out as I want it too and I can’t make the words make sense. It really makes me feel frustrated and so upset and I get very cross about it and just want to block all noise out and close my eyes and have some peace and quiet. I don’t think anyone can ever truly understand how it feels to experience it but if you imagine you have 50 people trying to talk to you at one time and you need to answer every single one of them then maybe just maybe that is a little insight into what it feels like. 
Obsessions
I have a lot of obsessions one of them being time and numbers!! I like the numbers 0, 5 and 8 so when I used to wear a digital watch I wouldn't do anything unless it was on one of those numbers which caused many problems as u can imagine! So I now wear a watch which I can’t tell the time on which solves my need for wearing one on my wrist but also allows me not to be stuck for getting out of bed and having a drink all at certain times etc….There are many ongoing battles of obsessions which come into life daily such as wanting to always drink from a red or pink straw, drinking from the same cup, sitting in the same seat in restaurants and cafes’, standing in the same place at the gym the list is endless!! But my carer is really really good at working with me and we are overcoming a lot of hurdles to make not everyone’s life easier but most importantly mine! It’s a daily struggle and cracking a new obsession I find so so hard it makes me so twisted and frustrated inside and I throw my head back and close my eyes and usually self injure. I can imagine it’s frustrating for my carers and people to witness but it’s just the way I have to work the frustration out of my body before I then try and listen to my carer and understand why we need to do something and what the next step is. It sounds complicated I bet but believe me over all it is so much easier than just giving into all my obsessions some people learn the hard way! 
Communication app 
I first got a communication app in 2011 for my 21st birthday (Best present ever!!) The frustration was so high and daily meltdowns because I couldn't verbally tell my carers what was wrong or even join in a morning circle and say hello to my friends at my day service the list was endless! I could sign but not everyone could so my list was limited to who I could talk to…. I tried editing it as much as I could and tried using it but my current carer didn't share the enthusiasm then instead she thought it was a cool gadget and played around…. Not helpful when it was my token into being able to access this wild and wacky world! I on and off used it for the next 2 years until Christmas 2013 when I had enough of people guessing what I wanted and getting it wrong and I decided to throw myself into using my app cause I really wanted to be heard and it felt good to have a voice (I had waited long enough!) Since then I’ve never looked back my new carers threw themselves into the communication device as much as me if not more! My current carer always insists I use it and it does help so much I’m still learning to use it and try and not self injure its hard but I’m really trying! I have now just bought the Dynavox Compass app and I think that will be life changing for me because of the amount I will be able to say on it I have loved the free trial and have gained so much conversation on it and feel like I can have a real conversation using it and boy does that feel good! Don’t think I’ll ever go back to the days of no device now it’s too quiet and my carer always laughs when I say I’m quiet! 
I hope you have enjoyed hearing Sophie's thoughts and will really think about what it's like for your kiddos and what we can do to better support them! It's voices like Sophie's that will ultimately raise awareness and give others understanding. 

Sunday, January 4, 2015

What's Possible

People said Kreed would never write, communicate, type, learn academics or really do anything he is currently doing. When Kreed was younger he was lost in chaos and destruction because everyone just saw a child that was the master of destruction. They saw a child hit, spit, kick, drop to the ground, bolt in a split second, clear entire counter tops, find secret food to eat, find secret nail polish to spread everywhere, refuse to sit in a child seat in the car and throw all his shoes or anything he could find at your head while driving, step in and smear poop, and basically reduce a room to shreds in five seconds flat. In all is those actions, no one was seeing what was possible. Or why he acted that way. 
It took at least five people to hold him down to do a simple x ray or any other medical procedure. He would bolt out of the room and pull everything out in a split second. Yet, seizure studies were done, blood drawn and IVIG began. None of it was easy. But all of it was worth it. 

Which brings me to now when I think of all Kreed has accomplished and what is now possible. Because we never gave up. We refused to see just a chaotic "non compliant" child. He was a child without a voice and those around him refused to believe he could. We felt differently.
Three years later Kreed has a voice and he uses it loud and proud. And it has made everything possible. He now understands why we do things like x rays, MRI's or why we go to the doctor. He doesn't try to bolt or leave and for the most part can be talked through everything. (Except a blood draw- that still takes three of us ha, but we still hope!). He has done more seizure studies and even sleep studies! Check out the wires he not only let them put on, but he SLEPT like that. 


Then they said he has to wear a bipap machine at night. Something even adults struggle with. Not only that, but an incredibly high pressure. And look at him now! He wears it at least six hours a night! It's possible! This child who won't even let you wipe his face with a napkin, wears a bipap mask. Because he has a voice and was allowed an opinion on which mask, followed social stories and practice rounds. None of it is easy. Every night I wake up at 2am to put his bipap machine on and again at 5am to make sure he kept it on. I run on very little sleep some nights! But it's worth it! He wears it and it helps him. This is what is possible. Even when people said it was impossible. 
An MRI goes like a dream, he doesn't fight the mask they put over him and everything goes smooth! 
Kreed was also a kid that bolted non stop- from the house, in the store, in the parking lot. Through a combination of his service dog and his device, he is my favorite person to shop with. He's engaged and he will go anywhere! While he still gets super hoppy haha, I'm happy that's the least of my worries. If he wants to hop through a store, so be it. But now he communicates when we are out- so instead of running to get what's in his head- he TELLS me and we have a conversation about it! 
He even sits patiently while we wait for food, and will even go and get the food himself. He is also learning to pay and order himself! No one thought this was possible.
Two years ago the school system Kreed was in said he would never write, didn't know numbers 1-5 and wouldn't progress much further. We said thanks but no thanks. We found out why he had difficulty writing- extensive nerve damage in his hands- so then we adapted his writing equipment and now he is finally learning to write. And typing is going along with this! He also recently demonstrated some more basic math skills, including addition! That's what's possible because we kept believing. See these videos here: Kreed Writing , Kreed doing math and Kreed doing writing and typing!


We document so much of Kreed because unfortunately autism families are often told what their child can't do, won't do or will never do. Or that their child is "non-compliant" when really they just haven't figured out how to get your child to cooperate. Kreed just wanted a voice. Now he LOVES "working", shopping, driving- you name it- all of the destruction from the past is exactly there- in the past 

Because we dared to defy expectations and instead give him none, just wings to fly. While our life revolves around Kreed, I don't regret it for one second. He's made me a far better person than I would have ever been. He didn't ask to be brought into this world and to be faced with such difficulties. So the least I can do is make it easier. And happier. Happiness must come first. Kreed will forever live a life I will never experience- he lived most his life without ever having a choice and even though he has a voice now, it's still hard for him to effectively communicate. He needs help to talk, dress, shower, go to the bathroom, get food or go anywhere. He is reliant on us. I can't imagine the helplessness he just sometimes feel to be trapped in a body racked with pain and sensations he can't describe to me or have a remedy for. He can only show us with his behavior or now some words on his device. But through it all, Kreed continues to amaze us and show us what's possible and how the human spirit can endure and overcome. 

Kreed will be 18 in this coming year and while that signifies independence for most of the population, I see it as an opportunity for Kreed to show the world what is possible past early intervention and that learning never ends. He will learn to write, type and communicate far beyond what anyone ever thought. 
From chaos and destruction to love, happiness and learning. Kreed continues to show me every day what is possible. We will never stop believing in him. We strive for progress not perfection and we have our whole life to teach and to learn. 
Kreed is my forever wingman and my right hand man. His unconditional love is incredible and his power to forgive when things are tough. My job is to make his life happy and that includes teaching him skills that will give him more independence. Kreed is so happy and proud when he can do things himself. We have our whole life to get there and I think he's done an amazing job so far. Most of all, Kreed has taught me and the world to think beyond what's possible and truly have no limits. 


Friday, December 12, 2014

A Mighty Heart

What does it mean to be mighty? It could be an adjective meaning having or being characterized as having superior power or strength. This definition fits Kreed. I've never met anyone stronger. The trials he faces on a daily basis I could never imagine and yet he can still face it with a smile like this: 
Or being mighty can mean of great size. Why then they must be referring to Kreed's mighty heart that beats strong in his chest (well and a little fast thanks to dysautonomia). Or maybe you mean it as an adverb- to a great degree, extremely. Well that is surely Kreed because he is a mighty courageous boy. 

Kreed is mighty in every sense of the word. These days Kreed smiles like this:
It amazes me. He has daily and constant pain due to his nerve damage, headaches, seizures, the bazillion times I have to stick him in the finger to take his blood sugar, the blood pooling in his legs etc etc. He has frequent drops in his blood sugar and he can't tell me when it happens; he can only show me in his behavior. 

Then let's not forget he's lived his whole life since he was three and a half not being able to speak or move his body how he wants. Can you imagine? You have to just exist and do what other people say and want you to do. Without a voice. Without a choice. Except to have behaviors to refuse choices. Then be labeled "non-compliant" because you have no voice. What a cruel joke. They just didn't realize how mighty Kreed was. 

Today Kreed uses his mighty voice as seen here when he let's us know just how it is:
We are lucky Kreed has found his voice with his Dynavox and I can't imagine if he had to continue to go this long without a voice. At the same time I can't believe we are able to have some conversations now. It's been a long and mighty road to get to here. Kreed has astounded me with his ability to adapt. He adapted when he didn't have a voice and he continues to adapt now that he has one. As Kreed continues to face incredible medical odds, I am always proud at how mighty he is in every way. He also loves. Mightily. And forgives. We can have a bad moment but in the next moment, he can be all kisses and moving on from there. He has taught me to live in the present and it's changed our life incredibly. We don't stay in anger or sadness. We live moment to moment and work on teaching him to communicate and live a better life. 

Our life is about making Kreed's life  happy. It's such a rocky and heart breaking road in so many ways. It's my privilege in life to raise Kreed and show the world what is possible when it seems everything is impossible. To show what a mighty heart our children have and how much they have to teach us. Which I guarantee is far more than we have to teach them. I'll say it again- Kreed has made me a far better person than I ever would have been. Period.

And when Kreed let us know that his body felt better and more free in a different city, we rose up and did the mighty thing and moved for him. He went from this:
To this:
And now he continues to amaze us with his strength and courage as he faces so many difficult medical issues. He faces hypothyroidism, epilepsy, an immune deficiency (CVID), metabolic disorder (SCAD), adrenal insufficiency, peripheral neuropathy, sleep apnea, POTS/dysautonomia, hyperinsulinism and possible mitochondrial disease with the mightiest heart I have ever seen. While he suffers so much, he also loves so much and enjoys his life on a much deeper level than you or I will ever know.
So when you think of the mighty- it is our kids who have to face so much and often do it with smiles like these: 
Every part of their life is Mighty. From their heart to their strength to their courage to their kindness to their innocence to their smiles in the face of so much adversity. 

Wednesday, December 10, 2014

Thankful

Originally published on The Mighty: http://themighty.com/2014/11/when-people-say-my-son-owes-his-life-to-me/ 

People have asked me what I’m thankful for and to even write about it. I’ve seen a lot of bloggers write about therapists or family members or even friends of their kids. But me? I’m thankful for Kreed.

He changed my life the moment he came into it. Little things ceased to matter and my whole world became about making his life better. It became about helping him find meaning in his own life, but at the same time, giving my life so much more meaning. He’s taught me about true struggle and true perseverance with his ability to smile and continue on his days, even when he’s in immense pain. Or we might have a yelling match, but he’ll still instantly cuddle with me because he understands unconditional love on a level far higher than any of us will ever understand. He understands the true meaning of love and that words or actions in hard moments have zero bearing on the actual love between two people.


Kreed taught me about what’s truly important in life. He’s taught me that it’s people who make the difference — not things. Kreed may like something or somewhere, but in the end it’s the people who make it all special for him.


I thank him for making me a better person. How many people can say that? He makes me want to be better, to work harder so he can have a life that’s easier for him or a life he wants. Because he has to work so much harder every day than I will ever have to. So he’s taught me to appreciate what I can do so much more and what I don’t have to face.

photo (16)
Our life is all about Kreed, but in living a life about him, he’s made me a far better person than I could have ever hoped to be. I’m kinder, more patient and I’m stronger and more courageous because I have to fight for his life too. I’ve learned to persevere and overcome whatever the world puts in front of us. I’m stubborn, and I never give up because it’s not just my life I’m fighting for but his too. I have a greater level of sympathy and empathy that I would have never possessed otherwise. I’ve learned to live in the moment and not have anxiety about the past or future because it’s impossible to do so when you are with someone 24/7 that lives and breathes only in the present. I can’t change the past and I don’t have a clue of what will come next, but I can breathe in the present, and set ourselves up for a better future.

Is our life hard? Yes — much more so than an average person’s life with a typical child. I’m never without Kreed except for brief moments of time and that’s how it will be for the rest of our lives. But knowing this has helped me push Kreed harder to learn to communicate more and be in public and interact with others so he can always go anywhere with me. I can’t do so many things other families are able to, but that’s OK, because it’s the people that matter and not the stuff I do or don’t get to do.
 


Kreed has taught me I can be bitter about our life and live in anger and sadness or I can accept the life we have and make it the best possible life with what we’ve got. I can choose to find the joy and happiness in our moments and let go of the anger and sadness. Our life has been so much happier as a result.

So when people ask me what I’m thankful for… it’s Kreed. Always has been and always will be. I would not be the person I am today without him and I certainly wouldn’t be this better version of myself. Kreed made me a better person. Period. Many people say Kreed owes his life to me, but what so many other people don’t realize is that I owe my life to him.

Sunday, November 9, 2014

The Luxury of Anger

You don't get the luxury of anger as a parent. Anger feeds chaos and disorganization and hate. I don't get to be angry because Kreed does this or that or doesn't do this or that. When I'm angry, it solves nothing. Or his brother who has Asperger's and picking up the pieces every time a grand scheme doesn't work out. I don't get the luxury of sitting here and being angry.

Angry wastes my time. It's unproductive. It doesn't make me happier. It takes joy. It takes happiness. It sucks the life out of everything. When I rage in anger at any of them, inevitably it makes the situation worse. Kreed doesn't know better or even if he does, he can't always comprehend his consequences and his brother is still unable to see long term consequences.

I want to be angry at so much. Most people don't ever hear me talk about this. I'm patient, I'm kind, I teach. I am able to be that way because I don't spend a lot of time in anger or wondering what if. As Kreed has taught me to live in the now, it lessens the anger- all I see is what it's front of us right now and I have to deal with it.

Sure, some people can be angry that then I don't have these super huge dreams or think about way in the future what things might be like. But why? I can't predict the future. I can't change the past. I have my present now that can affect both. I can improve my situation from the past and I can plan for the future by what I do now. So I figure it's win win.

I could rage against life on how unfair it is to Kreed. I could rage about how I wish our life could be different or he would be driving or dating or thinking about college. But why? It's not our present. It's not our life. My life is giving Kreed the happiest life possible and to always, always teach him so that he will continue to interact with his environment and people in the way that he wants and to find meaning within his own life. That's our life together. I can't separate my life from his to any meaningful degree because we are connected on levels most people would never understand.

Can I go out and have fun while he enjoys his respite time- absolutely. I can leave Kreed for various lengths of time to have a life outside of him. But life is always circular and after those brief moments of time, everything comes back to how it is daily. 

A lot of people fight in the autism world. Some fight against the diagnosis. Some fight about the language of autism. Some fight about the spectrum of autism. Some fight about blessings and curses and vaccines and therapy. At the end of the day you will not see me engage in any of this. Why? It has no bearing on my life with Kreed. It doesn't matter anymore what started Kreed down this path, only the progression. I don't care what celebrity has this or that because they do not live in our life or help in any way. I don't fight about therapy because Kreed is 17 and we know what works and what doesn't and I don't care if other people do the same or not- our kids aren't the same. I do not have the luxury of anger in our life for our actual life so I certainly don't have the luxury of anger for things that have zero bearing on our life. I'm too busy immersed in the life every day 24/7 to give a care about what anyone else is doing or how they feel about some celebrity that may or may not be on the spectrum and on a much further end than my own kid. 

I don't have the luxury of imagining a life that's different or better. The life is how it is. Whether it's helping Kreed succeed in communication or his brother to succeed in being independent- they are the children that were brought into this world with the promise that they would be loved unconditionally and be supported to fulfill their dreams and life. It doesn't matter if autism entered the picture or Asperger's or Kreed's thousands of medical issues. It just is. I can't change it, but I can make things better. 

Some nights I might cry. Some nights I might yell. I am only human. Some nights I feel numbed out. Caring for Kreed is a 24 hour a day, 7 days a week job. For life. Some days things go easy. Other days he rages without cause and I just keep him safe. I always try to figure it out. The more I figure out and teach him he better it is for us in the long run. So I don't get angry for long or much because time is too short and precious for that. 

Then I would miss moments like these:
Other nights I write blogs like this because I have to find meaning in our life and existence when it seems there is not much of an existence but rage and poop or pee or nakedness or days and days of sameness. But it's not about those moments that make me angry. It's about these moments that make me happy and him happy.
And I know in the end our life is enmeshed and for whatever reason we are working very hard to show the world Kreed's kind of autism and what we do to help him be successful that might work for other kids or adults. To do what people did not think was possible and for people to understand that our kids have #nolimits. The more I can help Kreed handle his emotions, learn to communicate and enjoy his time out in public, the better our life is over all- this is just fact. So I get up each day anew and strive to make it better than the day before. If I was angry, I try to find more joy in the new day. 

Or I write. I write and I keep it real. I write and I get my feelings out. I write our truth. No one else's. Just ours. Maybe other people can find commonalities. Or maybe you just love Kreed's dimples so your read about our journey. But at the end of the day it's our truth. Nothing more, nothing less. I will never be pulled into these endless stories that appear in my news feed because it's not part out our truth. At this point in our life, our truth is all I can handle. 
And for the boys affected and struggling, I don't have the luxury of anger because at the end of the day it solves nothing for us. And we need solutions and learning and teaching and happiness and joy. That is our truth. 

Saturday, October 25, 2014

Living in the Now

Living in the present. Such a simple phrase. Yet most in this world cannot do this- whether it's worries about the past or anxiety over the future, regret, guilt, and shame over so much. Kreed experiences few of these type of emotions, and if he does, it's fleeting. Because he lives in the now. He lives moment to moment experiencing this world in very different ways than you and I, but equally as powerful and important.

Kreed has a capacity for love I've never seen or experienced before. He knows who loves him unconditionally and without limits and he knows who does not and acts accordingly. He experiences the world in a very sensory way and will often stand outside and just feel the wind. When was the last time you just stood outside to feel the wind whip around your body and the sun beam down on your face? Sometimes I feel like if more of us took those moments we would be a lot better off. Kreed adores hiking and I feel it is because he loves to experience nature, calmness and beauty. (I read this to him and asked him and he said "yes" this is correct).
Kreed also lives in a world filled with chaos. It's a struggle to get his thoughts out, he obsesses at times over things he cannot have right at that very moment and he struggles to move his own body (from his own words too). So many times I feel like he gets through such chaos by the way he experiences this world and has no shame or social inhibitions about how he tries to right his world and restore calmness- even if it's rocking in his seat, jumping up and down or letting the wind over take him. Again, I find myself thinking, what if we all found a way to center ourselves frequently?

One of the many, many lessons Kreed has taught me is to live in the now. I remember the past, but I do not let it consume me. I move on fairly quickly from things because the present is so much more important. I think about the future and I have an outline of plans and I know I will get there- because I will set up my present to get there. I have found myself experiencing a lot less anxiety in this world because I live in the present with Kreed. I live in the moment with him. There is almost no choice. I teach him moment by moment what he needs to know. I think about how things would be easier for him and I outline a way to get him there. I let him jump, I let him rock, I let him make sounds- I let him do what he needs to do, because who am I to stop him from centering himself?
Now that Kreed has a device I am able to understand so much more of this. Yet more wisdom HE has given me. To understand why he does what he does. The rocking, jumping, sounds and sensory experiences- they do serve a purpose. For him it makes him "feel better." Who can argue with that? The world we live in is so filled with chaos even when you are not faced with the challenges Kreed and many others are faced with and I find we go about things in a much more backwards way, while Kreed does it in a much more logical way. And by living in the now, he is able to manage his chaos so much better.

Of course there are times where chaos over takes Kreed or he can't understand why something can't happen NOW and those are the not fun times. Or when Kreed is unable to do so many self helps skills or when he floods a bathroom etc etc. Those moments are not the fun moments, but they are still moments to learn (even if he forgets the next day). The fact is, even if he gets in trouble for whatever it is he can't do...he holds no grudge toward me for saying no or yelling if he does something he's not supposed. It's right back to instant kisses and hugs and laughing and smiles. Because he lives in the now. He is an incredibly forgiving boy, lucky for me! He has taught me to do the same when you love someone. There  can be anger and sadness and things done or said, but at the end of the day, it's always about love.
I commented to someone recently that I consider Kreed's life is so much more important than my own. Why? Because I think he has far, far more to teach others than I do. From his capacity of love and kindness, to how to experience and live this life. Sure, our life can be HARD. No doubt about it. Kreed is home for life- he doesn't get to drive, go out with friends, live on his own or go to college or work independently. That makes life harder for us than most. Some people hate the lack of freedom they have to live their own life away from their adult child. It is a different life and can be incredibly stressful and hard. I get it, I do. But for some reason instead of focusing on all of that, most of the time I try to focus on what we can do for Kreed and for others like Kreed. How do I make his life easier? Better? Happier? Because it is all about happiness. I just feel like he didn't have a choice in this life either- he didn't choose to be this way. He didn't choose to not be able to talk. He didn't choose to have a thousand medical things wrong. The least I can do is make life more enjoyable for all of us. That's why I work so hard on his device. That's why I work so hard at his skills. No one ever said it would be easy, but it is absolutely worth it. Kreed is only 17 and has made a lot of progress in the last year. So I know by the time he is 25 we will be jamming! All this from a boy they said was unteachable, unREACHable and should be placed somewhere due to his horrible behavior. No thanks. Kreed was just trying to shout out from his head and be heard and the only way to do that prior to a device was to have behaviors. Kreed now learns every day and has reached deep into my own soul and touched it in a way that changed me forever. I don't regret that one single bit.

There is another page we follow called Conversations with Casey (click HERE). She often speaks about Choosing Joy. And she is exactly right. That is what Kreed does. That's what Casey does. They choose joy. They choose joy over thinking of the thousand things that are hard for them and instead focus on what they are good at. They seek out joy every single day of their life. And when the chaos over takes, they do what they can to right the world again.
That my friends...is living in the now. Living in the present. And focusing on what is more important. To me, Kreed has become a symbol for many- that there is hope, there is a light- but you have to be willing to change your thoughts, your life, what you focus on. Some say no they won't. They shouldn't have to change anything, but the child must change completely. Alone, neither way can work. I can't change the world for Kreed- the difficulties, the chaos, how his body works. But I can change my reactions to it, I can teach him, I can find ways to make it easier for him. I can change some of our life around so that it is easier and less chaotic. We teach him to manage this life better, but we also change our environment to make it conducive to do so. I choose joy too. I choose to find those moments that are awesome, that are happy, that just are. I choose to live in the now as we navigate this world together. I am not perfect and I make plenty of mistakes with Kreed and I do let anger over take me from time to time and Kreed experiences that side of me. Then we wake up the next day and he will cuddle and kiss me and move on that nothing ever happened. He forgives me, I forgive him and our life is richer as a result. None of this is about being perfect. Progress not perfection.
I never started Kreed's World with the intention of anything other than filming his progress with a device because it had never been done to this level before. Yet, for me and for Kreed, it has become so much more. A diary of our life and a testament to living in the now and choosing joy. Living in the now has helped us be able to forgive those hard moments and move on without regret, without wishing things would be different and honestly, to be able to not sink into deep depressions because of the state of our life. We just keep going with each new day bringing us new opportunities.

I challenge all of us to live in the now. To rock. To jump. To feel the wind. To find our center. And see the difference it  can make in all of our lives.

Kreed, I hope one day you can read all of this and realize the profound impact you have made on this world. I know you and I can't wait until we get to those moments. Until then, I love you and thank you for teaching me far more than I will ever teach you.