Since I last posted to this blog over a year ago our son Nicholas has been admitted to the Neurobehavioral Unit of the Kennedy-Krieger Institute in Baltimore, Maryland which is part of Johns Hopkins. Kennedy has the only behavior modification program of its kind in the country, maybe the world. He has been there since July 1, 2009. It has been a bumpy and hopeful journey. We miss him so very much. It is unclear when he will be able to come home as he has a ways to go but what we want most for him is for this experience to be the one that changes his life forever. Below is a letter I wrote to him to let him know how very much we love him.
I have wanted to write you a letter for a long time. Even before all our lives changed so dramatically and the hospital stays came and the trip to Kennedy-Krieger and us losing you.
We miss you. More than anything else, there is a hole in the pit of my heart that will not heal as it shouldn’t because we wait for you. Everyday has a gap where you should be and everyday life seems to be shaded gray somehow. We are always waiting, like expecting a letter that is delinquent in arriving; we sit by the box and wait.
I hope you are happy. I hope you know that the decision to take you to Kennedy was heart wrenching. For years we struggled with the anger and the aggression and with the advent of your hitting yourself on the head. As was the case with every intervention, we held on for longer that we probably should have, but the alternative seemed so much worse. It was impossible to consider sending you anywhere other than home, just like it seemed impossible to admit that you were autistic so many years ago. It seems silly to even say that now but it is true. Every step of the way we wanted to believe the best not the worst until the worst slapped us in the face.
I know that Kennedy is not the ideal situation for you. No windows and no outside. Things we hoped for you are put on hold, like any time outdoors or swimming. On the darkest days for me I think of you sitting in that tower with your mat and the boarded over windows. It feels cold and sad to me and makes me cry for you.
I know it has not been easy for you there. You struggled so much at first when things were torn off the wall and your window to the city was covered over and we first heard “room clear-out” and we prayed so hard that you would come through. Then the agonizing choice regarding your medication, it is so hard to see you seem sluggish and drugged. This is not the Nick we know and love so much, but you are a fighter.
We are so proud of you. On your own and so far from home you are giving this treatment your all. Things seem to be on the right track for the time being, and even though we remain concerned about all the drugs and the aggression we also remain confident. You have a far better chance to change and grow there, where people seem ready to help, instead of home where aggression and restraint has bred fear and uncertainty. We wanted to be able to bring change to your life and we failed. I can’t help but feel that on some level somewhere in the past there was something we didn’t do or ask for or demand which brought us to where we are. I am so sorry.
We love you so much. Every part of you haunts the house. Each night I look at your bed and expect to hear the snores. When I ride in the truck alone I miss you and your book in the seat next to me. I found your blanket wedged in a chair the other day and wanted so badly to see your face sniffing that blanket and holding it tight. I miss big jugs of juice and cutting up fruit and bike rides in the academy. While I do not miss the apprehension of the event, I even miss picking you up from school. You are my friend and I miss everything about you.
This summer was so strange, starting with that agonizing ambulance ride to the University of Michigan hospital. I am sure you wondered what you did. You left for school on June 11 and have not been home since.
That, more than anything breaks my heart for you.
And then the plane ride. I was so proud of you. I hope I told you enough that you handled that like a trooper. I love to think about you looking so intently out the windows. I am sure that even though you had flown before so many years ago that you were fascinated by the whole experience. Every step of the way on that trip you handled it so well. I almost wanted to turn the whole rig around and take you home. I still feel that way most every day.
But I know, and I think you know, that you can’t do that right now. I think you know that you need help and I think you know that we need help. I wish so much that we could talk and you could explain so many things. I want so much to know what we can do to help you. What did we do or not do that causes so much anger and rage? I want to know if you are in pain, and if that causes you to attack us and yourself. Are you afraid and what we can do to make you not feel afraid? What bothers you and makes you the happiest? How can we help you overcome what must be endless frustration and the intense isolation that comes from the lack of language? It seems like the ultimate cruelty to me really, that you can’t express the most important emotions to anyone, that they are bottled up inside when they most certainly hold the key to a better, fuller life. There is so much I want to tell you and I suppose this letter would be a start. There is nothing I want more in this world than to have you home but we can’t. We can’t wait and wonder. We can’t hold you down and fight you off anymore. No one is safe, not you, or me, or Mom, or Goob, or anyone. I can’t tell you how that makes me feel to say that. That I can’t be the Dad that you need, I am so sorry.
You would be so proud of Andrew. He works so hard. College is quite a load for him, one I don’t think he anticipated. He has been such a help here at home and he misses you as well. Every time we go to Baltimore to see you he wants to visit too. I am sure he would want me to tell you that he loves you so much and he is anxious for the time when you will come home to us. I have never been a “little” brother and, really you aren’t very little for a little brother. I have always tried to imagine what your relationship with Goob would have been like if all things were perfect. I think you would have been competitive. I think he would have been more bookish and you more physical and together you would have complimented one another. I know you would have been proud of all his accomplishments and he yours and I think you would have been good friends. Maybe I feel this way because this is what I always wished for in my relationship with my brother. I think you and Goob would have been close. I know you still can be.
It is always heartwarming to see you two together. It makes me smile to see him handle you and hug on you. And even though it sometimes makes me a bit nervous, I do like to think of my boys rough housing with each other as buddies do.
Then there is Ellie. Nick, I know in a better time and better place you would be so proud to be her big brother. You would bust with pride. She continues to grow and change. She is doing so well in school and at home. Everyday Mom talks with her about you and Ellie loves to talk about “Yick.” As a big brother myself, I have always tried to imagine what your relationship with Ellie would have been like if all things were perfect. I have always liked to think that you would have been very tough on her in a good way, encouraging her to realize her potential and respect herself and I think you two would have been so close. I know you still can be that way.
I am certain that Mom misses you more than anyone. I see in her eyes the depth of her loss with you so far away. Sometimes this seems so odd to say that with all that has happened to us all. Some people think we should all feel a sense of relief that you are off in Baltimore and yet nothing could be further from the truth, especially for Mom. Even though we know that you have a better chance for a normal life where you are there is no relief here. It is not a holiday. Every day is like the first day and neither of us have ever had a worse day than the first day. Not a day goes by that she doesn’t tell me at some random moment how much she misses you. We talk about you and dream for you and hope for you and cry for you.
The rest of the family asks about you often, but of course never often enough for us. I know you have received mail from Grandma H. with gifts that only Grandma would give. Every time I see or talk to Grandpa H. he asks about you and is eager to hear news of your progress. Of course Grandma and Grandpa D. send us off with a care package for you every time we visit. They loan us their car and help so much with Ellie and, most importantly, send Grandma’s coffee cake for you and Nigel. I know that both sets of grandparent miss you desperately.
We love to visit and we begin planning our next visit as soon as the first is over. The warmth of seeing you doesn’t last long enough and no sooner do we leave the city than we are ready to go back. I’ll be honest with you; it is not easy to see you there. I am certain that the people there are invested in your care but it is not the ideal setting. I know that you must miss Thaddeus and I know that he absolutely misses you. He lost his job because he couldn’t be on time. I worried that you might feel like he abandoned you which is sad to think of. He cares for you very much and would be there with you if he could. We can’t wait for the windows to open back up and for the sunlight to stream back into the tower and to sit at home and be able to think of you watching the people of the city go about their daily lives. I like to think that you watch them and speculate about their lives, where they live, what they do, do they have families, are they happy. We can’t wait for you to go outside, maybe to the aquarium to see the fish. When I think about the aquarium in Baltimore I think about the library here at home when it used to have the big fish tank. You loved that fish tank and when I took you there I all but had to drag you out you were so attached to those fish. I think you would love the Baltimore aquarium. We can’t wait for you to come home. It has been so odd to have you away and I know it will take some getting used to have the new and improved Nick home to the extent that things will have to change here but I know were ready to get started.
We think about you all day every day. I look at the bath tub and I think about all the baths and the water cascading down the steps. When the newspaper flops on our front porch I think about your days on the route. When I go into the back yard the swing brings back your epic climbs to the top. At the lake it was impossible to not think of all the laps with the tube behind and your lone trips to the rock and the fires. Nothing is the same without you here.
We look forward to the future. Mom and I talk all the time about what we hope life will be like. We have a lot of hopes and we see so much. We hope that there will be calm here at home and peace for you personally, that you will have learned ways to manage those times when you feel overwhelmed or those times that none of us can explain. We see trips to the store again and solo bike rides around the block again and dinners out with all of us together again. We look forward to not hearing from school and participation in all those things they have left you out of for all these years. We see a recovery room dark and empty and IEP meetings that we look forward to. We look forward to the beginning of your life and the end to your turmoil and pain. We see opportunity for you and freedom from whatever it is that has a hold on you.
Please know that we all love you so much, that we hold you close in our hearts, that we think of you everyday and thank God for this gift and opportunity for you to live.
All my love,