When HE gives up fighting

I am pretty sure I have stated on here how it is difficult to communicate with Daniel about how he is feeling. He likes to say that his ear hurts or that his teeth hurt, but he is saying it more for the reaction he gets from us (another dramatic person in the family). When he is truly sick, we actually have no idea what is bothering him.

On Friday I got a call from school saying that Daniel fell and hit his chin. There was no question to them that he would need stitches or at the very least need to be seen by the doctor. I went to get him and the funny thing is that his teacher said he did not cry at all. When I got to his school he was eating his lunch and talking and talking and had just a bit of blood dropping from his chin. He was happy! I knew though, that he wouldn't be happy at the doctors office.

I took him immediately to the pediatricians office and once the doctor saw him she said it would have to be either stitches or glue. Since Daniel does not enjoy having band aids or anything on him, they went with glue so that if he pulled at it, he wouldn't be pulling out the stitches. Before they worked on him though, they needed to clean and numb the area. Of course that meant he needed to lay down and be still. Now whenever we have taken him to the hospital (for dehydration) or even the doctors office or the dentist, he is very reluctant to stay still. It doesn't matter how much you tell him that everything will be okay and that it won't be long, he doesn't understand and fights to get off the table. For a little boy, he is very strong and it usually takes a good 3 to 4 adults to hold him still. I am reluctantly one of those adults. It is not easy and Daniel does not help when he kicks and screams, but that part I am okay with. For it is actually when he stops putting up the fight and surrenders like a hunted animal caught in its prey that I feel the most sorrow. After a while he gives up and part of me (even though I know that it would hurt me physically) wants to scream at the top of my lungs: "Don't give up Daniel! Don't you ever give up the fight!"

Life Sentence

Our daughter Alison is the best big sister that Daniel could ever ask for.

She is also a dreamer. Especially when it comes to Daniel. For many years she has dreamed about what Daniel will be like when he gets older. She has pondered who will marry him and wondered about his children. We have taken this in stride and plainly told her that Daniel may never get married or may never have children. This has never caused her to stop dreaming or wondering out loud.

When Jason gave Daniel a bath last night, he commented out loud the question of what are we going to do when Daniel gets too big for the bathtub. He keeps growing--they both do. Alison chimed in that Daniel could just take a shower with her. Daniel still cannot stand on his own and when he gets wet then he is double in difficulty to lift. We told Alison that taking a shower may not happen and she got quiet.

Do you know what it means for Alison to be quiet? We knew she was intently thinking about this. I pulled her over and wanted to gently remind her of what the specialist said just a few months ago...that there is a great possibility that Daniel may never walk. She went to her room. A few minutes later Jason called her back in and we explained (Jason did this well) that we will take care of Daniel until we (Jason and I) can no longer take care of him, and that it may mean putting him in a group home someday. At that Alison flat out told us that Daniel was NEVER going in a group home and that he would live with her no matter what! We told her that was a sweet thing to say, but not to forget that she may be married with her own children one day and that Daniel may be too much for her to handle. We explained that Daniel would not be far from her and that we would all visit him and love him no matter what.

Then she cried, and I saw it...I saw the realization in her eyes of the life sentence that Daniel's disability is. I cried too knowing that she knew what we all knew. She finally understood that Daniel is who he is and will not be the little brother she dreamed of having. I think on some level she always understood that, but she is a dreamer and she continued the dream for as long as she possibly could. Yet last night she woke up and to me, that is the saddest thing I have ever seen.

Running up that hill

I lost it last night.

I didn't get angry or throw things. I didn't scream at anyone, but I silently cried in my husbands arms. It was as we were laying in bed listening to Daniel cry and scream. He has had difficulty sleeping lately and we started melatonin. Jason said something that set me off and I went down that road.

The road where I weep for what could have been. I look to who Daniel would be, had he been born normal. I wonder if Jason and I had never gotten married then Daniel wouldn't have been born.

I love Daniel. I love him so very much and would never want to live without him, but sometimes you see your future with your child with special needs and you see no movement in the future. You see no difference and that crushes your soul.

You overcome and you see what a great kid you do have, but it happens. I can't deny that I have these feelings. I can't believe that others do not from time to time have the same feelings. I think it is only natural. It is difficult to see into a future that is not filled with traditional milestones for both of my kids. You don't plan on being a parent of a special needs child. It is not a choice you make and you don't even get to prepare for it. I wouldn't ask for a different Daniel, though at times it just seems I am running up that hill...

"And if I only could,
Make a deal with God,
And get him to swap our places,
Be running up that road,
Be running up that hill,
With no problems."--Placebo

Reality check-up

Several years ago, Lara sought out and reached out to the authority on brain malformations like Daniel's. In exchange for our token contribution to his research funding, Dr. William Dobyns reviewed Daniel's brain imaging back then and provided us with a diagnosis: cerebellar vermis hypoplasia. At the time, Dobyns was practicing and researching in Chicago. Today, Dobyns is in Seattle, and so are we. And this week, Dobyns and his team met Daniel face-to-face.

The hard facts:

• Daniel will almost certainly never walk independently. At nearly 7 years old, Daniel's trunk will not develop any further. No amount of physical therapy will alter this outlook, but we will continue to work with a physical therapist to get Daniel more comfortable with his walker.
• Daniel will almost certainly not be able to live independently when he is an adult. For example, it is likely that he will never be able to have a job. Through continued physical and occupational therapy, we strive for whatever level of self-sufficiency seems realistic.
• There will come a time when Lara and I are not able to take care of Daniel. A group home will likely be in his future. We are not currently financially prepared for such events but are hopeful that we still have sufficient time to begin appropriate planning.

What's good:

• Daniel social and language skills are still developing, and we are hopeful that continued speech therapy and special education will only bolster this progress.
• Genetic research is growing by leaps and bounds every year. Dobyns now has Daniel's DNA sample, which could be made available for any possible clinical trial that may emerge.
• Lara and I also both provided DNA samples (spit) to determine any genetic causes. This analysis won't help Daniel, but it could be useful for Alison to know down the road.

Ten Fingers, Ten Toes and it's off to the Neurologist we go...

One of the many reasons we made the difficult decision to move all the way across the country was that we knew that a certain neurologist worked at Seattle Children's Hospital. This neurologist is the only neurologist in the country (world maybe?) who is studying the role of genetics in brain abnormalities like the one that Daniel has. In fact, this neurologist is the one that (after having a bad experience with the neurologist at UVA) first diagnosed Daniel with Cerebral Vermis Hypoplasia (CVH). All he did was look at Daniel's MRI.

At the time he was working in Chicago and we just figured we would never meet him in person. We were wrong--never say never. In less than two weeks we will finally go see him!

I am not sure why I am so nervous, hopeful, excited about seeing this particular neurologist. In general, a neurologist is not the one who helps Daniel every day of his life. In fact, not since his first year have we dealt with a neurologist of any kind, knowing that Daniel will only improve with the physical therapy, occupational therapy, speech therapy and special education teachers. A neurologist knows what is happening in the brain, but cannot perform the tasks of helping the brain to grow. And yet knowing all of this I still have hope and faith in the neurologist and hope that he will give us more than we've ever gotten from a neurologist before.

Because he is the man. He is the one who is leading the research on what Daniel has. He is the one who may someday (in the near future?) have the answers that we all long to have. The reasons why and the ways to make it better.

Am I putting too much faith in this one guy? Sure. Do I have every right to want this person to be a miracle worker? You bet!

The other night in the bed, Daniel and I were hanging out. He is very much into counting to ten these days and very proud of himself when he does, "Great job!" He won't actually count things though, he just counts. I was trying to get him to count his toes and it reminded me of when he was born. Just like when his sister was born, I counted to make sure he had all ten fingers and all ten toes. Thinking that as long as he did, then everything was okay. Yeah, life is not that simple.

There's no way out of here

We moved! Across the country! It was a bit hairy but we all got here in one piece and we are slowly settling in. The first several days were difficult because Daniel did not want to sleep in his new room. We think it was because he has slept in hotel rooms with all of us for ten days, anyone would be confused by that. We managed to try to make the trip interesting, though we were also trying to get out here in a good amount of time too.

The most difficult part of the entire move for me has been Daniel's reaction. Because of his developmental delays he does not and has not been able to fully understand the whole idea of moving. He would keep asking to "go home" when we were stopping every night in a new hotel, and we tried but couldn't explain to him that we were moving to a new home. It almost felt as though we were taking him from his home and never returning him. I felt so bad. What was even worse was coming here and not having him sleep. He would cry bloody murder in his room as though we were torturing him. We didn't know what to do, and being exhausted ourselves we did not respond well to him getting out of his bed and also to each other. I felt alone and kept thinking about how our lives would never change and how Daniel would never learn. I keep thinking of a particular song that reminds me of our situation by David Gilmour:

There's no way out of here
When you come in
You're in for good
There was no promise made
The part you played
The chance you took
There are no boundaries set
The time and yet
You waste it still
So it slips through your hands
Like grains of sand
You watch it go
There's no time to be lost
You'll pay the cost
So get it right
There's no way out of here
When you come in
You're in for good
There never was there an answer
There an answer
Not without listening
Without seeing
There are no answers here
When you look out
You don't see in
There was no promise made
The part you played
The chance you took
There's no way out of here
When you come in
You're in for good
There never was there an answer
There an answer
Not without listening
Without seeing
There's no way out of here
When you come in
You're in for good
There was no promise made
The part you played
The chance you took
There's no way out of here
When you come in
You're in for good
There's no way out of here
When you come in
You're in for good
There are no answers here
When you look out
You don't see in
There's no way out of here
When you come in
You're in for good

Travel Woes

We are gearing up for our BIG trip! The biggest one ever! We are going across country! Since we are moving to Washington state and we live in Virginia, we will be traveling across the country. This will be an adventure for sure. Especially with two kids in tow. While we intend to try to visit some interesting sites along the way (Mount Rushmore and Yellowstone), it will still be a lot of driving.  Daniel has not been such a good passenger lately. When we are out for too long or out late at night he gets very upset and almost has a fit in a way. He is so overtired or just wants to be home. It is really very sad, he cries and cries and asks for Pickles-the-cat.

We will also be staying in a lot of hotels along the way which he is not fond of since we all sleep in the same room and either Jason or I need to sleep with him. He cannot fall asleep as well and also has difficulty sleeping well. Thus so do we. It also affects Alison because when he cannot fall asleep then she cannot. It makes for a bad night and something I, for one, am not looking forward to. I mean, I know we will have fun along the way but then I just worry, worry about the nights, the sleepless nights. Then worry about the days after that. It is difficult sometimes. We really want to take Daniel everywhere but then it is very difficult to also take them everywhere and not be sad about what could have been, what vacations would be like.