Letters to Kreed

After a particularly emotional week I started writing letters to Kreed. Although he doesn't understand them, my hope is one day he will. I thought it would just be one letter and that was it. Then the next week exactly seven days later, I was struck to write another one, again very emotional to me. So now I think this will be a continual thing. So here are my letters to Kreed.

January 17th, 2013
Dear Kreed,
How many months have we stared at your sweet face begging you to tell us what's wrong? How many days have we wiped away your tears as the pain and frustration is too much? How many years have gone by since you've been locked up inside? I stare at you in wonderment now. Communicating. Telling us your thoughts word by word, phrase by phrase.

I can remember laying in front of you begging for you to tell me what's wrong. Begging you to let me help you. I'm sorry I didn't know what was wrong. We had to decode your behavior and have less clues to work with than on the Medical Mysteries! How we wished you could have some words, any words, some way to tell us.

Instead you told us through your anger, your fear and your sadness. You told us through the wounds on your hands, the bang of your head, the pounding of your feet and the tears you would cry. Your silence has been deafening. Your voice lost.

Here you are today, telling me you don't feel well. Your head hurts. Telling me your sad when you remember things in the past. Telling me your excited when you do something fun. Turning to a peer and asking her if she's seen the movies you like. Requesting anything and everything you want. Finally knowing some of your favorite songs. You've found your voice. Maybe not in the way we thought or used to want, but we hear you loud and clear now buddy.

No more silence. No more waiting to hear your thoughts. No more wondering if we will ever know what's inside of you. You never have to go unheard again. We can hear your voice. And it's sweet, and sensitive and funny. Priceless.

I'm sorry for all the times we've failed you, talked about you in front of you like you weren't there or ignored a communication attempt.  I'm sorry it took so long to give you a voice. I'm sorry it took so long to give you a choice in everything. And I'm sorry I didn't take your device everywhere sooner- you deserve to have a voice no matter where you are, not just when it's convenient for me.

I'm sorry for not understanding sooner. I'm sorry so many people hurt you in your life and didn't understand you. I'm sorry some people still don't understand you and probably never will. I'm sorry for anyone that has ever treated you like you were less and I'm sorry when I can't protect you from the people that make you feel that way. I will always fight for you and fight for your voice.

I love hearing your thoughts and your voice. I'm sorry when I get mad and frustrated when you have trouble understanding why you can't have everything. It's been a long road to get to here. I will continue to walk beside you and help you and lead you anywhere you want to go.

I'm sorry for when I will let you down in the future or lose my cool, but I promise I will make it up to you and try harder. I promise to hear your voice no matter what, no matter where we are and no matter what we are doing. I promise I won't let anyone silence you again. We hear you now and will never let that voice go silent again.

We love you for all that you are and for who you are going to be. We love you through the silence, through the tears and pain and through your successes and happiness.

I hope at the end of all of this, you will know how far my love goes. Here's to you dear sweet Kreed, who has finally found your voice and it is beautiful.

January 24th

Dear Kreed,

I watched you lay on the floor this week. Didn't want to get up, didn't want to do anything. My heart broke for you. I was so happy you could tell me you were just tired and nothing hurt, but damn those medical problems that take you from me. 

You can tell me now if you're hurt or if you're just tired and that is a miracle to us. Although many things are still a mystery, how you feel about everything is not. 

I don't always understand why you get stuck on certain things or why you think you have to eat out every second of the day, but I try to set limits and boundaries to help you understand this world better. It's full of chaos and uncertainty which at times is too much for your black and white thinking brain. I try to give you some order to the chaos, though I know it's so hard. I don't know why your brain wants five bags of veggie chips a day and you don't know why I only let you have three (maybe). It's hard all the way around. But we'll figure it out together. I'm sorry when I get frustrated, I'm sure it confuses you even more why I don't understand. But I love you buddy. 

I love to hear your voice. Even if it's called "Joey" on your device- to me it's just Kreed. I love how you are using your words now, even when you are so angry at me. You tell me in words and not hurt. I watch you think of new ways to ask or tell me things and I sit in wonderment. Three months ago everything was a crisis to you. Now everything is a discussion. And you my dear child, have changed our world by beginning to do that. 

I asked you to let me hear your voice and now you say things loud and proud. It's not always easy and sometimes things still hurt, sometimes I still have to protect you from yourself, but I hear you buddy. I hear you in everything and even if I am going to say no, you can ask me anything. I'm sorry when things are tough and I'm sorry when you don't get your way. But I love you through it all and when you hurt, I hurt. But right now- you are making me so incredibly proud. 

So it was hard this week; seeing you lay there with listless eyes. Seeing you find joy in nothing. Watching my heart break for you while we try to find out the new medical mystery. But thank you for giving a voice to how you feel and with that we will find answers for you. Just take my hand and we will get there together. 

Rest easy tonight and I'll see you in the morning, ready for a new days' discussion. And hope one day I can read these letters to you and you'll understand. 

February 3rd, 2014

Dear Kreed,
I'm sitting in a chair next to you and the room is completely silent, except for the whirl of oxygen you now need to sleep at night.

My heart has been broken while you've been in this hospital. To see you suffer. To know I can't make it better. To see you ignored and your thoughts and feelings not cared about. To see you still smile and flash your adorable dimples at the very mention of veggie chips. You have taught me to appreciate the little things in life despite the pain and suffering.

And you have found your voice. Somehow through all of this pain and sorrow you have shown the world how aware you are about everything. And I am so incredibly sorry for not realizing sooner. For all the conversations we've had in front of you. For all the things you must have heard. For all the teachers and therapists who talked as if you weren't there or paying attention. For all the people that have doubted you and called you names that are beneath you.

I promise to always fight for you. I promise to make the world hear your voice. I will always help you in every way you need. We will figure this out together. I will make your voice heard loud and proud and I will dismiss anyone who would treat you otherwise.

No one should be made to feel less as so many people have done to you. I can only imagine how crazy it must feel in your head. Screaming to be heard and silenced by many.

I hope you know how loved your are and how much I adore you in every thing you do. I even miss our arguments right now while you are suffering. Hearing your thoughts are like heaven to me, even if I disagree with you. And hearing you say autism is you has given me another new perspective into you. I have hated autism, I have hated what it's done to you, what it's taken from you. But now I see you know that autism and you are inseparable. Instead we need to hate what it has taken from you but not hate the word itself because to hate it would mean to hate you and I have nothing but intense love for you dear child. Thank you for teaching me the difference.

You are so much stronger than me. Stronger than anyone I know. You have suffered in silence for so long and yet you have inspired thousands now. I can't wait for the day you can understand facebook and social media and all the people you have touched and inspired. Just by being you. The boy with an infectious smile and killer dimples. You have touched me in ways I can't even put into words.

So I write you letters. And one day you and I will sit down and read these letters and you will know how I feel and have felt. My tears are flowing freely now, so I must end this. I have to get ready for a fight with your doctors to make sure you are heard and I don't want to look like a hot mess! I want to be strong for you like you have been so strong through this. I owe this to you. And I love you more than you know. Or maybe you do.

February 23rd, 2014

Dear Kreed,

Life's been tough recently. Right now I'm sitting next to you helping you eat before bed. I don't understand why you need so much food to sustain yourself over night and I'm sorry it's so difficult for you. I adore you so much and it pains me to see you in pain. I can actually say I miss your hyper days. It's so hard to see you lay on the ground day after day and I'm so helpless to help you.

I want you to know I'm trying. I'm logging all your symptoms and I'm gearing up to fight your doctors. No one should be treating you like this and I hope one day you can put your own voice to your experiences. And make the world feel ashamed that they would dismiss you and your pain.

I know sometimes I'm frustrated and I'm sorry for those times. It's hard to be the helpless one, just as I know it's more difficult to be the one in the pain. I try to not let you see my frustration and try to remember how hard this world is for you and how misunderstood you must feel. I promise to keep fighting for you. To keep helping you. And to never stop until I know your voice is heard and you are happy.

I worry so much. Every second of every day. Sometimes it incapacitates me. The thought of how you must feel living through this every single day. I can't even put into words my fear for your health. I feel like you must think I'm failing you for not relieving your pain and I just beg for you to understand that I'm fighting with everything I have.

I saw a post today on facebook with a bench facing a lake or ocean. It asked if you could spend one hour talking to anyone past, present or future, who would it be. I instantly thought of you. Oh how I would give anything to just have one hour of hearing every single one of your thoughts. I would hold on to that hour and never let it go. I would find a way to stop time. For that hour. That precious hour.

But I know sometime in the future we will have many hours. Our time is not short, but long. If we could only figure out what's wrong with you and why you are suffering now. Maybe those first five minutes of that hour would be spent with Dr. House to tell us what's wrong ;-)

One day I hope you read these letters and see what you mean to me. And know how hard we are fighting for your well being. I know sometimes it can seem like I'm an asshole and strict and don't let you do everything you want to do, but I promise it is for your well being and for a better life for you.

I will never stop fighting for you and your place in this world.

March 7th

Dear Kreed,

I'm sitting and thinking about you after you just tried to bite yourself because you wanted a bag of chips that we didn't have. And as soon as you tried to bite, you started to run because you knew I would try to prevent you from doing so.

And I think about how hard it must be for you. How hard it is for you to understand why we don't have a constant stock in chips you want. How you can't just hop in a car and get what you want- but you have to ask for every single thing you want.

And that got me thinking. You know in our house the "c" word is banned. You know that word, compliance. We never want you to comply. We want you to understand and state your opinion and then be okay if: 1. You have to do it anyway. 2. If you can't do it. 3. We come to a mutual agreement. It's not black and white. But then I was thinking even more. The very fact that you have to ask for everything! Even hopping in the shower- I've told you a million times it's okay anytime you want it and would he happy for you to get in and turn it on without permission. But you ask anyway. Just like you have to ask to open any bag of chips, make food in the oven or go to the store to get what you want. You're 16 years old and should be driving but that won't be a possibility for you ever. And so you are completely reliant on us for your needs.

And sadness washed over me. For the pain you must feel to have to ask for everything. And not because we force you too, but because you know you can't do a lot of the things yourself because of your tremors and medical issues. I know sometimes I get mad at you for trying to hurt yourself, but I understand the frustration. It suddenly dawned on me how even a bag of chips can cause you such pain- you don't have the ability to go get it yourself. You're completely reliant on us to get the message of what you want and hope we say yes. And how hard it must be to sometimes hear no and then know you have no other option but what we say. You can't yell at us. You can't always tell us in advance the chips you may want before you run out. You can't say you will go get it yourself. When I then think of how every moment depends on our moments as well- it's overwhelming. And I get it. I will try to be more understanding. I won't be perfect and have my own emotions. You know... when it's midnight and you want something from a store that's closed!!

But it's made me think about how we can help you better- teaching you that stores have hours and when you can buy the food. Teaching you to ask for more of your favorite chip. So many daily life skills other people take for granted. I will try to do better for you and to be better for you. Because I can't imagine how incredibly frustrating it must be for you.

And in your moment today, I understood. And in your words, "that's shitty."

I love you Kreed. I'm sorry everything is so hard for you and will continue to be. I can't fix everything for you, but I can try to make it easier for you and to help you understand. I'll always try my best and I'm sorry for when I'm less. But somehow you always pull out a smile for me, even when I know I'm harder on you than I should be. But I always love and adore you. And tonight I understand you a little bit better.

Love you buddy.