Just Keep Swimming...

The initial shock, anger and sadness has subsided for us. We have really tried to focus on day to day instead of the big picture--whatever that may be.

Occasionally I will get jolted to a bad place. Like when Daniel's case manager said that we might want to consider supplemental health insurance through social security, I was not happy about thinking that he would need that. Or when Alison was playing and she had a toy of Daniels and she said, "Okay now Daniel crawl over and get it."

But the good times outweigh the bad and Daniel and Alison are wonderful children. I cannot imagine putting any limits on either one of them-disability or no disability. I will not let a diagnosis or prognosis tell me or my child how far they can go. I don't believe in that. I believe that both of my children will go as far as their heart desires. I believe they will reach for the stars and find themselves way beyond that. I believe they will surpass us all and change other peoples lives for the better.

I believe it-so it must be true.

The Mind of a child

I was taking Alison to school today and of course the major part of any of her conversations with us these days is all about Halloween! Her costume choices change from day to day even hour to hour. Today she had in her mind (since the morning so it must be serious) that she would be a mermaid like Tasha and Uniqua (from The Backyardigans). She went on and on about how she would need to practice her dance to be a mermaid. I then asked her what she thought that Daniel should be for Halloween. Without a thought she said, "He should be a butterfly." "A butterfly," I replied. "Yes," she said, "So he can fly and fly."

Strength

When I had my eating disorder, going on 12 years ago now, I was told that I was a very strong person. I was strong for admitting I had a problem, for getting treatment and for sticking it out even during the most difficult of times. I wouldn't exactly call myself a success story though as even though I am no longer anorexic, there is still a disordered eating in me that makes me fat. However at least I don't starve myself to death.

During my recovery I was very positive. I remember surrounding myself with only positive things. I would cut out quotes from famous people that inspired me and taught me how to take things day by day. I used to read books about my disease or even just about struggles and relate only the positive to my life. I was very focused in my recovery and very determined.

Lately though it seems that whenever I try to get to that positive place again I cannot. I don't believe it is my depression holding me back, though I won't discount that either. I just cannot focus back. I have tried-no doubt. Not just in this situation but in others as well. I feel like I have lost that part of myself. As if I have become jaded enough in my "old" age to not know how to be the positive, strong person I once was.

The thing is, now is when I need it most of all. Not for myself but for Danny.

The funny thing about grief

The funny thing about grief is that that stages can cycle through rather quickly. The only grief that I've ever experienced in my life was with death of loved ones. I've never felt these sort of emotions in quite this sort of scenario.

So I went through some of the cycle - denial, anger, sadness -- and I know that I am likely to get caught up in these stages any time in the future. But today was a good day, for no other reason really than I have had a chance to get used to the situation.

With more and more friends finding out about Daniel's condition, I feel the need to blog the good stuff as well as the bad, the mundane as well as the dramatic. I don't want those of you reading to feel depressed if I'm not feeling depressed.

Something good for a change

Finally a bit of good news. Just a glimpse (no pun intended) of something good that we have heard in a while. Daniel and I and my mom went to Charlottesville today (where Daniel will go to see many of the doctors he needs to see) to visit an opthamologist. Oh this guy (the doctor) was very nice, very good and very thorough.

You see a few months ago we noticed Daniel's eye's sort of wandering. His sister has amblyopia (lazy eye) and so we were concerned about Daniel having that as well. Also, if you look at any of those websites you see that the kids with lissencephaly (seems like all of them) have some sort of vision problems.

Well now guess what, Daniel has nothing wrong with his eyes. Yes, his eyes wander out but not in like they would with lazy eye and it is also intermittent, not consistent. The nice doctor also looked at his cornea and structurally his eyes are in tack. He still may have some vision issues, we won't know that until he gets older but for now, nothing to worry about. We will just have to go back there and have to monitor his eyes--just like everything else. But I am okay with that. I am getting to know my way around that city very well.

Road trip anyone?

Warning: Some foul language may be found here

Hi there, Lara posting this time. Jason has done a great job in setting up this blog. He has actually unknowingly stolen some of my ideas but that's okay, I forgive him.

Jason and I are having a difficult time wrapping our heads around this. We have both had our moments. Not in front of the kids though I am sure that they can sense something is not right. My one major question (maybe one of Jason's too) is why him? Why us? I cannot understand or even begin to understand the reasoning of why Daniel or any child for that matter should be born this way. I am very upset--at who you ask? Maybe myself, maybe God, maybe anybody who steps in my way.

Why! Goddammit Why! Why our little boy! Why him! Why! WHY! WHY!

Did I do something wrong. Did I take too much pride in the fact that our daughter was healthy and very normal. Did I suspect that we would have another normal healthy child and just take it for granted? Did I believe that I wouldn't be able to handle something like this? Did I look at all those parents, when I worked in the hospital and feel sad but slightly relieved that our child was okay? Was it that? What did I do? Motherfucker, I want to know.

I want to punch something, get drunk, yell at the top of my lungs, cry like a little baby, scream and rant. I WANT OUT OF THIS NIGHTMARE NOW!!

Wake me up please, I don't want to live here anymore.

It feels surreal. It feels like no place I want to be and I am stuck here. Fuck! I want to take away all of this from Daniel and I want to just give him my life. I want him to have a normal happy life and I want to give that to him. Please let me do that. Please. I hate this. I HATE this!

Someone please take it away. Take it away. I will be good from now on. I will never think bad thoughts and I will always act good and do good, just take it away.

Motherfucker.

Welcome to Holland

Jenny Semel, Lara's second cousin who happens to also be a physiatrist, suggested that we read the brief essay below. I know that these words have already helped us in beginning to understand how to deal with being parents in this new and scary situation.

"I like it better than the medical links," says Jenny. Me too.

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

© 1987, by Emily Perl Kingsley.

A dose of reality

Somehow, the medical descriptions of lissencephaly didn't phase me. I was able to discount all of the gloomy accounts of seizures and childhood death because I knew that Daniel wasn't a textbook description. He is a happy, responsive boy who is making strides with his motor skills and physical abilities.

Yesterday morning, after taking out the dog and before anyone else was awake, I did some searching for more personal accounts of kids and parents dealing with lissencephaly. I found a Web site that a family had done for their boy who lived until about 25.

The site had lots of photos of the boy when he was a baby and as he progressed through childhood.

I was shocked. The baby photos looked a lot like Daniel.

And as I browsed the online album, I could see how the cute little facial characteristics developed into what I can only call facial deformities: eyes fixed in different directions, buck teeth with huge gaps in-between. I also scanned the parents' account of how the boy became so large that they had to invest in an electric lifting device to get him up and down stairs.

I would post the link here, but I don't want to upset anyone else in the same way that I upset myself. I felt like I was looking into a crystal ball, like a vision of Daniel's life 2 years from now, 5 and 10 years from now.

Since viewing these photos and reading these accounts, I feel lots of bad and sad feelings. I would be devastated if we lost Daniel during childhood, but I am also devastated at the notion of how is life will play out.

What will he need? Will he be suffering? Will we be suffering? It's overwhelming.

At first, my reaction to Daniel's diagnosis was calm, cool, rational. I vowed to concentrate on how Daniel is doing TODAY and not worry about the uncertain future. When I stumbled on this family's Web site, I also stumbled in my convictions.

Now, I must work to get back to that place that I was just a few days ago. I know that coping with Daniel's disability will only happen if I approach it day-by-day.

The diagnosis

After a year of wondering what ails our boy, this week we received a diagnosis. Rather than try to paraphrase the doctor, I'll just insert below the same message that Lara emailed a number of family, friends and care providers:

Dear Family and Close Friends,

This e-mail my upset some of you and that is not my intention. My intention is to keep you informed and give you the information as we know it. Also, this is intended for you to know but to understand.

Know this: Daniel will not be defined by any diagnosis in this family. Daniel will be defined by the amazing sweet little boy that he already is. Also before I go on even the doctor said that Daniel has a "mild" form of the spectrum. Also, Daniels therapists have said that he is "the bomb," meaning of course that they are impressed by his progress. He really is doing very well.

So the family of disease that Daniel has is called Lissencephaly. You can read about it here:
http://www.ninds.nih.gov/disorders/lissencephal/lissencephaly.htm
and here:
http://www.lissencephaly.org.uk/aboutliss/index.htm

The form that he has is called Pachygyria.

The reading may not be fun for any of you so please don't do it if you don't want to do so. As with all family of diseases, this one comes with many family members and each has its own degree of severity. We do not have any indication as to what specific category Daniel fits into. Also, according to the doctor, Daniel will define is own prognosis and so may not see some of the characteristics of this diagnosis that others will have. We just have to wait and see.

Jason said it best: none of us know what will happen tomorrow or next week or in a few years from now so it is best to focus on today and what is happening today. Today, Daniel has decided to sleep in because he was up at 2 in the morning just chilling with his mama. Today, Daniel will grab new toys and eat new food and smile his wonderful smile. Today Daniel will love his family and show it in the way he lights up when any of them are around.

I am not a very religious person and neither is Jason but I am not above asking for any prayers or thoughts of encouragement not just for Daniel but for all of us.

Love,
Lara

I felt the need to follow up Lara's lovely message with my own to the same folks:

Hi. Daniel's dad here. I don't mean to butt in, but I thought it would be worth mentioning something briefly regarding Danny's condition and recent diagnosis...

The take-away from all of this is that we are NOT putting on a brave face in a time of adversity. Instead, we really do believe that Daniel is doing fine and that we have no more reason to worry about his future than we do about Alison's or any more than any parents do about their kids.

If you follow the links that Lara provided, it's pretty scary. But really we're not scared. The bottom line is that Daniel is not at all suffering and he is making developmental progress -- grabbing, talking, sitting up, etc. These more observable conditions are what's really important.

All the best to you and yours. Have a great weekend.