Moving Rapidly Towards a New Year

As this year comes to a close, and the new year fast approaches I am amazed by just how quickly time flies and life goes by.

Daniel is sure going strong into the new year. He is making such great strides. Sipping though a straw is getting better and better, eating and chewing is continuing to improve. He is continuing to get strong in his upper and lower body and he just wants to try to do whatever it is that his sister is doing.

The kids are best of friends which is so sweet to see. They love each other like no other brother and sister I have ever seen. It makes Jason and I so very proud of our kids and this wonderful family that we have.

This new year, I am sure, will bring its challenges and its ups and downs as all years past have done. The momentum that we see in Daniel now will no doubt continue, though be tempered with setbacks as well. My only hope is that as a family we will continue to love each other enough to help each other through whatever may stand in our way of moving forward.

Ramblings

Lately I have started and stopped several posts in my mind. I have titled them and finished some of them, but really have not been able to actually sit down and put them in the computer.

Finally as I sit here I have an assortment of posts running around and hence the title of this one.

Daniel has recently started the special ed program with the city school. This is a good thing and is the main reason why we moved to the city in the first place. His therapist(s) will be coming weekly, sometimes twice a week and hopefully Daniel's progress thus far will not slow due to the transition.

He is on the verge of so many things. Everyday he demonstrates something new. Small but new and wonderful. He can sip from a straw, he can hold a spoon and help feed himself. He puckers his lips and gives kisses. He points to things and he is learning so many new signs and demonstrates his knowledge everyday.

Daniel is also becoming a typical 2 year old in a not so typical 2 year old body. He is wanting what he wants when he wants it but is getting very frustrated at not being able to communicate his wants. His limits are becoming clear to him and to us.

At this point outsiders could still say it is just his age, his inability to talk and not necessarily his disability, but it is apparent that his disability is ever so present.

Jason said the other night that he is not sad about Daniels disability at all and that he loves Daniel for what he is. That he wouldn't want him any other way and I am in complete agreement except, if it could be another way, I would want it that way.

I find I am still angry, bitter. Not sure at who though. Is it god or something/someone else? I just don't think it is fair. What does the future hold for my sweet boy? Why must he go through this already tough life with an even tougher obstacle? Did I do something to make this happen? Why him? Why can't I be the one to have such an obstacle and he be normal?

I think a lot about the brain now. The brain doesn't get mentioned much in our posts nor does it get mentioned much in our house but it is an ever present force in what happened and can still happen with Daniel. How is it that the brain at such a young age in the developmental stage of the embryo can have such a huge impact on the rest of a persons life? What goes on? How is it's effect changed or can it be changed? There is so little we know about the brain. It is such a huge part of our being that remains so mysterious. One day I hope that there will be more answers than questions. One day I hope I will be less angry at this disease and more able to kick its ass.

Thanksgiving Do Over

Last year for Thanksgiving we were in North Carolina visiting with Jason's sister and family. Last year I fell down the stairs and had to spend Thanksgiving in the ICU in a hospital in North Carolina. Away from my family.

This year we had every intention of going back to NC and having a do-over of sorts. Unfortunately I got sick (nothing as major as a lacerated spleen). I just did not feel at all up to traveling. So, we had our own Thanksgiving dinner at home.

My parents came over and Jason and I cooked the whole meal together. While this may not be that out of the ordinary for most people, it was out of the ordinary for us as a family.

Since I have known Jason, we have gotten together with his family for Thanksgiving. When we were first dating and engaged we would have Thanksgiving dinner in NJ with his mom, sister, her husband and my parents (a strange combination I agree). When Alison was born we traveled to NC to have Thanksgiving at his sisters house with my parents and his mom in tow.

When we moved to NC and his mom moved as well, it was an easier commute to his sisters just two hours away.

Over the years we had variations on the same theme. Some years my parents couldn't travel to NC from NJ and last year they just decided to stick it out in VA, only to come a week later to drive me home from the hospital.

We used to say (before Alison was born) that it would all be different when we had kids and it was.

Yesterday I was reminiscing about my Thanksgivings when I was a child which were one of my happiest, one of my fondest memories. I felt comfort, I felt loved and I felt safe. I reminisced about this and Jason said, "you want to go back to that." I said that really I wanted my children to have all the same feelings.

What I get from Thanksgiving (besides a belly ache) is this yearning to have special memories for my children. I have always been about traditions, and it means more to me than anything for my children to have traditions too. Something they can cling to when things are not right.

I feel that I don't provide this enough for my children. They have no real religious believes and no sense of belonging. I have failed them in this way. Though I do feel that with Thanksgiving at least, I can provide a little bit of that for them. Just may need to not get sick or be in the hospital.

How Big is Danny...So Big!

I came home from work the other day and my mom was sitting on the floor with Daniel and was holding him up. Daniel was wearing his fancy new sneakers and was holding himself up pretty well (he can stand unassisted if he leans against something). My mom was also trying to get Daniel to "walk" and he did a few steps (assisted) quite well. The thing that struck me most about this particular afternoon was Daniel's height.

Daniel is tall.

Alison is tall (off the charts) and Daniel is following in that same path. However, with Alison, you could always see the difference between her and other children her age. With Daniel not standing up all the time or walking, it is easy to forget that he is so tall.

I was shocked almost and saddened too. I wanted to so much for Daniel to remain standing and even walk to me so that he could finally be a "normal" little boy.

I know one day Daniel will walk, I am sure of it but that knowledge doesn't take away the sadness that sometimes exists now.

Happiness Is

It should be no surprise to our friends and family that we are a liberal family. We are not overly above and beyond in any respect but yes, we certainly were very saddened when our current President won yet again in 2004.

We had our heart set on this election. We craved a change that would resonate beyond our existence and with the grace of god we got it!

It is not at all that I believe that having this new president will specifically change anything in particular in our humble little home, town or even state. I still know that we will continue to struggle to work to make ends meet, to get out of debt, to try to balance work and home life. But what our new President-elect brings to my mind is HOPE.

Hope that some day, maybe not in my lifetime but in my childrens lifetime, that there will be an America that I have never known. An America that I have read about, dreamed about and even envisioned.

This America will treat all citizens equal no matter what, period. This America will really be the land of opportunity for everyone, not just the selected few with the most money. This America will be free from injustice, free from hardships and everyone will have access to the most basic of needs.

This new America, I know, will not come about overnight. Nor will it come in our new presidents first term or even in eight years. But, in my heart of hearts I feel it. I feel that our new president will lead us. He will help us all to see the greater picture. He is our guide to this new America.

He is not alone, he has enlisted all of us to help in our own way. To change what is not right. I am there. I am with him all the way. I will do whatever it takes for my County to make this place the very best that it can be for my wonderful, smart, beautiful daughter and for my sweet, smart, handsome son. They, more than anyone else deserve this victory, they deserve the new America.

Say it with me: President Barack Obama. Oh yes and if all works out for the best, someday we could say: President Alison Sokoloff or President Daniel Sokoloff. Both get my vote!

A Bunch of Stuff

My head is spinning. Mostly from a constant headache that I seem to have had.

It has been a while here since I've expressed my thoughts about what is going on with Daniel. I know it's wrong, but the thought still comes to mind of "Why him?" or "Why us?" I actually e-mailed Jason a while ago and asked him if he ever thought that way now, after a year of knowing what our little boy has. He was eloquent in his response saying that no, he did not ask himself that question and that for whatever reason God has given us this sweet boy and we are to take care of him.

Oh and how sweet is he. I would never ask for anyone different from who Daniel is. He brightens our every day. But that doesn't mean I can't feel in the least bit slighted on his behalf does it?

Daniel is doing so well, in ways that are hard to explain. It's really not the big things, but a lot of the little things that end up being huge.

Daniel is in the process of being evaluated by the Special Ed team in our school system to see if he is eligible. It is a whole process that began in August and will not conclude until probably the end of the year (if he is deemed eligible). I fight with myself between wanting him to be eligible and receive all of the services that are available to him and wanting him not to be found eligible for being too normal. Does that make sense? He needs those services but to the risk of being labeled as having "multiple developmental delays." The truth is very hard for me sometimes.

You look at Daniel, you spend any amount of time with Daniel and you see an entirely different boy then what the evaluations will say. Daniel can do so much, physically and knows so much cognitively. He really is a bright little boy. He is doing so many things now that are subtly "age-appropriate." I wish I could capture all that he is in some sort of way to share with all of you. He would bring sunshine to any room any place, anyone. He is our great big beautiful baby boy and we love him more than words or evaluations can ever say.

Sarah Palin makes me sick

Let me just say it right up front: It makes me sick that Sarah Palin is using her Down syndrome-stricken baby in order to gain favor among voters. It's a disgusting display, and I sincerely hope that people see through it.

In the chilling scenario where McCain wins the election, I don't believe for a second that Palin would have one ounce of influence in issues related to families of special-needs children. She'll be my "friend in the White House?" Please.

One Year Ago

It was a year ago, not to the day, that we found out the name of what haunts our boy. A year ago that our family was forever changed.

I still feel the raw pit in my stomach that aches for what could have been.

The diagnosis came after months of not knowing and months of guessing. It was given to us without full knowledge of what it was and how it could and would and can impact a person's life.

We struggled with it individually and as a family. We cried and we got angry at no one but the disease. In fact we spent too much time focusing on the disease. Giving it even a minute more than is worth. For all it was was just a name.

We reached out and our family and friends--you, gave us the love and support we needed to focus on what really mattered. We started this blog to mostly keep our family and friends updated but also to let go when we couldn't make sense of it all.

We have been through a lot in just a year, as it seems to be that way every year or even every measurement of time. You take the good with the bad, the ups and downs of life and you move along trying desperately to shield yourself from the blows. But honestly it is all really worth it:

Mourning the loss

My aunt died this week.

While she never got to meet Daniel or really Alison for that matter (except when Alison was a month old), she was a big influence in my life.

She died of lung cancer and around the same time that she was first diagnosed, we started to realize something wasn't right with Daniel.

My aunt worked with adults and children with cerebral palsy and she was very helpful in identifying some of the things that Daniel may have trouble with. While she was going through chemo we were in the process of having our lives changed by Daniel's diagnosis. There was a time that she was done with chemo and it seemed as though the cancer was gone. Unfortunately though it only took a year and a half from her diagnosis until she passed away.

She was a fighter though. She only went on her terms. She was in hospice for quite a while and when all her doctors said "only a few more days," she proved them all wrong. She had a strong will--runs in the family--something I have, something Alison has and yes, something Daniel has as well. She was my closest aunt you might say. She was the one I saw most and got to know the best. I know that there is still a lot she could have taught me and a lot I could have learned.

I wanted so much for her to know my kids to meet Daniel and to help us in this fight with Daniels diagnosis. She was a fighter of causes and would not take no for an answer. I will miss her for her strength. I wanted so bad to visit her too many times before she was diagnosed and during her treatment. I wanted to take the kids and go up there to NY and for her to finally see the real adult me.

She too wanted to visit us and for a brief time thought she might get strong enough to make the drive down. I did get to visit her finally in May while she was still very sick she did still have some energy and a taste only for sushi. My brother and I went to visit the same weekend and it was nice but too short and too long in the making.

My only regret is not taking the time to go while she was still healthy. Or not insisting that she visit before she fell ill. I often think that there will be time, next summer vacation, winter break, spring break but then life gets in the way. You realize when it is too late that the time was there all along you just thought you were too busy.

Goodbye Lois, please watch over our precious boy.

Chance encounter

While Lara and Alison were waiting in line at the register, I was pushing Danny in his stroller through a toy shop yesterday. As we were exiting, a large man bent down to Danny, smiled, reached out his hand and said "Hey buddy, gimme five!" It was immediately clear that the man was mentally retarded, exemplifying the demeanor of a child in the body of an adult. (He himself was grasping a toy in a box.) The man, likely in his 20s, was accompanied by his mother, who I would have guessed to be in her 60s.

I fully expected Daniel to abruptly jump in his stroller seat, frown, and then cry at the whole affair. Danny does not like people to sneak up on him. Even pretty young women, whom he typically ogles, are not well received if they surprise him with a greeting and a smile.

But Daniel did not frown or cry. He was slightly startled, but then he looked the man over, and slapped him five! He's been doing this at home with us, but I never would have expected that he would do it with a complete stranger, much less a stranger who snuck up on him -- and particularly not someone who looked slightly scary as this fellow did. But there he had done it. Daniel slapped this guy five without worry.

I have been thinking about this quite a lot since it happened. Did Danny feel that there was something OK about this guy? Was there something about his childlike personality that Daniel found unimposing? Did Daniel sense some connection? Perhaps this is far-fetched. Maybe Danny is just growing out of a phase that happened to coincide with this incident. But still, I can't help wondering how Daniel processed this exchange.

A moment later, the man's mother turned to me and asked, "Is he challenged?" I was silent for a moment. This was the first time anyone had recognized Daniel in this way. I stammered, "Yes, yes he is."

Lara jumped in and said, "He has a brain disorder called lissencephaly, which no one has ever heard of. The result is that he has some developmental delays."

In a sweet, knowing manner, the man's mother said. "There's something about his face. I thought he might be." Then she complimented him: "But he's got a lot of teeth!"

The woman's son then opened his mouth and said. "Look at my teeth!" showing his yellow buck teeth.

This chance encounter makes me wonder not just how Danny is doing right now but also what the future holds. Will Lara and I be taking care of Daniel when he is an adult? Will he become independent? So little is known about Danny's condition, it is pretty near impossible to predict anything. In my heart, I know that "not knowing" is perfectly acceptable. But when presented with a picture of a possible future, it is difficult to not let my mind wander.

Birthday Boy

Two years ago today, Jason and I went to the hospital to have our second child. With no knowledge of whether or not that child would be a boy or a girl, but with the expectation that since we already had a little girl that we would most likely be having another little girl. Not until the nurse mentioned that it could be a boy did we think that we might actually have a boy. At 7:35pm our precious little bald-headed baby boy was born. Sweet little Daniel Paul. We were stunned but also blessed. We had a complete family--mom, dad, daughter and son. Thank you Daniel for completing this wonderful family...we love you!

soplar un beso

When Alison was just 6 months old, we were living in NC and I got a full time job. We weren't as fortunate as we are now to have my parents nearby to take care of her so we needed to put her in child care. Jason found a place close by that was more like a house than a child care center. It was further from any child care center I had ever seen by also being a Spanish Immersion preschool. Alison thrived. She was bilingual by the age of 2.

It is unfortunate that she doesn't have that everyday now and has lost some of her Spanish but hopefully she has a good enough foundation. It took a while for me to get used to, having barely passed Spanish in high school and hating every moment of it (I didn't know then what I know now). I had a hard time keeping up with my daughter who was eventually speaking sentences in Spanish. Before too long her teachers would teach her something in Spanish that we hadn't yet taught her in English. They would teach her (at the ripe old age of 1 1/2 or 2) to blow a kiss (soplar un beso). It was amazing she knew what to do with those words and of course when we got her home we said "un beso," quite often to get her to blow a kiss.

Daniel of course knows no Spanish words, though sometimes we try to speak it for Alison's sake but I think Daniel just deems us crazy, but one thing he does now know is the English version to blow a kiss. When asked he will blow you a kiss with a big "Mwah," at the end and it is again one of the best damn kisses I have ever received.

Found It

I have been thinking about this song for a long time now. It isn't played much but I find it to be something of a song for Daniel:

Close your eyes,
Have no fear,
The monsters gone,
He's on the run and your daddy's here,

Beautiful,
Beautiful, beautiful,
Beautiful Boy,

Before you go to sleep,
Say a little prayer,
Every day in every way,
It's getting better and better,

Beautiful,
Beautiful, beautiful,
Beautiful Boy,

Out on the ocean sailing away,
I can hardly wait,
To see you to come of age,
But I guess we'll both,
Just have to be patient,
Yes it's a long way to go,
But in the meantime,

Before you cross the street,
Take my hand,
Life is just what happens to you,
While your busy making other plans,

Beautiful,
Beautiful, beautiful,
Beautiful Boy,


---Thanks to John Lennon

Words

From time to time, I will read something that I could not have written better myself. From time to time someone else hits the nail on the head.

Pirate Booty

No it is not a porn video. But yes, that would make a good title for one. It is a food that is something like a cheeto. It can almost melt in your mouth and it is the one food that Daniel can eat and we don't need to worry about him choking on. It is also the one food that we have been trying to get him to use his pincer grip to pick it up and put it in his mouth. Well, today that is just what he did. Ladies and gentleman I give to you our little boy who has discovered how to feed himself!

The Present

It has been a while since we have talked about Daniel's progress and what he is doing these days. I believe that Daniel makes progress everyday and it is possible to see if you just keep your eyes open for it.

He is very proficient at getting to a sitting position from laying down. He continues to get up on hands and knees and rock back and forth in a starting position for crawling. Daniel has become VERY good at standing and will even stand almost unassisted at times. He continues to babble like crazy and I swear he has a whole lot to say and is trying to tell us but we just don't understand. He continues to say Mama and Dada and Papa but when Grandma and Papa were away for a week a few weeks ago he started to say "Granma." He always seems to say the names for the people who aren't there. He has also become very much the jokester making up his own way to amuse us while playing patycake. He has a wonderful sense of humor, a wonderful smile and a wonderful laugh. He is at the stage where he wants the people in his life to not leave him, even for a second and he expresses that very well. He is very attached to his mama too which makes it difficult for mama to leave for work every day.

These few things sum up Daniel but in no way is it everything. I love that Daniel continues to progress. Though I may feel sorry for myself and my fears and worries, Daniel pushes on and I am so proud of him for doing that.

The Future

I used to think that I wanted to know everything about the future. I wanted to know exactly what was going to happen and how and when. No surprises.

Faced with an uncertain future, I now question why I want to know such things. How will it make my life different or will it make it any different?

I thought that it would be nice to know what is going to happen. To be able to prepare for it, but what if it isn't even something that I can prepare for? What if I were to learn about the future but have no way of knowing what to do with that information?

I have a need to control things and the fact that I have no control over the future is very difficult for me.

Daniel's prognosis is a mystery. Will he walk, will he go to school, will he progress at all beyond today? Will he have seizures? Will he require a wheelchair and 24 hr care?

Jason is always quick to point out though that we could even ask those questions about Alison. A happy and healthy child but what do we know?

I worry unnecessarily sometimes. Or, shall I say, I worry when I cannot do anything for what I am worrying about and so I waste time (precious time) worrying about the future and not paying attention to the present.

I have learned a lot since Daniel's diagnosis. I have learned about what is important in life. I have learned to treasure the small things. But the one thing that is taking me a while to learn is how not to worry and look into the future. I have wanted a crystal ball for so many things in the past. I wanted to know. I was always scared to know but thought all along that I would be better off.

I have to learn, am learning that the crystal ball would not give me any pleasure no matter what it told me about the future, it would only make me lose what I have now.

Two Very Different Worlds

This past week I took Alison to get her registered for Kindergarten. I am not sure why this was such a hard thing for me. It could be just the realization that she is growing up, that she is not the little toddler she was not too long ago. I am having a hard time with it all.

This week I also called about initiating Daniel into the school system too, but in a very different way. He remains in early intervention until he is 3 years old however, we have the option of exploring what the school system has to offer in the way of special education for him. It is a whole other world.

In the first world there is normal lingo of registration, kindergarten readiness, reading, school bus, first day of school and in the other world there is this language that I am not used to using. Things like evaluations, therapist--words that don't belong in an almost 2 year olds life.

It is still raw, it still hits me sometimes the way it did 9 months ago, that feeling of having your whole world taken and put upside down. I am still trying to catch my breath, still trying to make sense of it all. On the outside it may seem that I am okay but it is very much there close by the surface and I don't know when or if it will ever go away.

Family vacation

We just got back from Disney World and had a terrific time. I was just looking over the photos from the visit, reliving some of the highlights, and certainly this trip was mostly about Alison. At five years old, the Disney magic is real to her. Ask her, and she'll tell you that she met and spoke with actual Princesses.

But the photos also reminded me of the quick thoughts and momentary observations that raced through my head throughout the trip -- thoughts and observations about Daniel.

Early in the trip -- I think it might have even been on our first day -- Lara remarked that it was difficult for her to see all the other kids who were Danny's age. It was hard for me too. Under normal conditions, Danny should be a toddler by now. Kids his age should be mobile, whether crawling, walking or scooting. Kids his age are eating solid foods. Kids his age are talking. At Disney World, kids his age were running and playing in the pool.

Certainly, we are aware of Daniel's deficiencies when we're at home, living our everyday lives. Having just been surrounded by loads of other families for nearly a week, though, Daniel's delays seem more pronounced. Not to oversimplify his condition or discount his progress, but in general Daniel exemplifies the abilities of an infant in the body of a toddler -- a tall and heavy toddler.

Even a toddler Danny's size still fits into a baby stroller, so Danny's limitations probably aren't immediately apparent to most. For this reason, we obtained at Disney World a sticker to adhere to Daniel's stroller, a sticker that identified to theme park employees that our stroller was to be treated the same as a wheelchair. This situation allowed Daniel to remain in his stroller in areas where strollers were usually prohibited. We didn't have to park the stroller or fold it up as other families did, for example, before queuing up for many rides or entering certain attractions.

While this was a convenience for us, it was also a sore reminder of Daniel's condition. I looked around and saw older kids and adults in wheelchairs and so-called ECVs, those little motorized carts, and thought that this might be what Danny needs in a few years.

Make no mistake, I had a wonderful time on this vacation. Even though there were some tantrums and crankiness, and not all of them exclusive to the kids, I almost wish that we could have stayed longer. I always find it hard to go back to work on Mondays because I miss my children terribly. Today, I'm going back to work after more than a week of being with them. It's enough to make me want to put my career on hold to be a stay-at-home dad. (Which, by the way, is something that I have often said that I would do if we could financially swing it.)

If I did stay home with the kids, I would make Daniel's therapy my job. As good as his therapists are, I don't feel that they provide nearly enough attention. One hour every week or two just isn't cutting it. I don't blame the therapists necessarily. They are in high demand in a part of the state where there just aren't very many such therapists to go around.

This post is a bit all over the place, I know. But I suppose the haphazardness of my writing is an indication of my mixed emotions in the wee hours before I have to go back to work. I'm not sure if this vacation has helped me to put things in perspective or has hampered my take on my boy and his lissencephaly.

My Boy

It is so much fun to watch your children develop a personality.

I have loved watching Alison's personality develop over the years. Even when she was born, I could see what kind of person she was going to become. The child did not want to sit still from day one. She wanted things her way or else. Guess what she is like today?

Daniel is different from his sister though and it makes for an interesting mix. Daniel is a bit more mild mannered and laid back. He takes it all in and then decides if he is not happy with something. You can tell by watching him that he knows more than he is letting on. It is almost as if he is taking notes on what life is like.

By contrast his sister tackles life and asks questions later. Not that either one of these personality traits is better, just different.

In Daniels case though there is a lot more mystery behind his personality. Sometimes it is difficult to tell whether it is him or his disability that is coming through. Sometimes I wonder how much his disability shapes him and his personality. Would he be a different child altogether if he were normal? Would he be bold and daring and loud and unafraid or would he still be the sweet sweet boy that he is only with more mobility?

I know that inherently we have a built in personality, but then there is that nature vs. nurture argument that worries me. Will Daniel grow to be angry, quiet, withdrawn due to his condition? Will his sister? What affects Daniel certainly does not affect him alone.

The ripple effect began long before he was born and really there is no telling how it will end. I am enjoying watching to see what happens, stepping cautiously and wanting very much for time to stand still.

He Moves

Last night Daniel got on all fours, for the first time by himself, and rocked back and fourth for a few seconds. Then while he was on his stomach a short while later he was trying to reach his daddy and sister and couldn't quite get to them so he scooted forward a tiny bit.

I know it seems very small but to us, it is truly wonderful. We cannot wait to see what he will do next and where he will go...

What I Will Do

I will never stop trying to get the best care in the world for my children.

I will never stop believing that my children can go as far as they want to go in life.

I will always want better even if they have the best.

I will always want to take away their pain and have it be my own.

I will always work to make the world better for my children to grow up in.

I will never let my children fear life.

I will always encourage my children to reach beyond their wildest dreams.

I will always love my children more than words could ever say.

I will be strong, be brave but never be afraid to cry when I need to.

Wait and See

We took Daniel to the eye doctor again today for a follow-up.

It was a shorter visit this time which was nice.

Daniel was very excited as usual to go in the car and take a trip. He just likes to get out of the house and I really don't think that he cares where he goes. Daniel is such a great little traveler.

The doctor was following up for a bit of a strabismus problem that we had noticed way back when. We actually noticed it less recently, but still there. Alison has a form of strabismus as well with her amblyopia. Daniels form is where his eye deviates out. It is called extropia. Apparently this only happens when Daniel is looking at something far away. It does not happen when he is looking at something close up, which is good.

The bad news is that as Daniel gets older, he will be wanting to look at things farther away (like the T.V.) and so it is possible that the deviation will get worse.

We will need to keep an eye on the situation (no pun intended), but eventually Daniel may very well need surgery to correct the eye muscle.

I asked the doctor whether this was due to his lissencephaly and he said that he could not make a direct correlation with it but that he does see this in a lot of developmentally delayed children.

I on the other hand have no problem what so ever in blaming lissencephaly.

Stupid, PIA lissencephaly.

Nine Month Old Water Baby

Daniel has been going to pool therapy for the past few weeks. In the bathtub Daniel is very happy and kicks and laughs and splashes everywhere and so we thought it best to get him into the pool and have it work for him. He is very hesitant at first but when he gets into his comfort zone it is like he transforms into a little fish. He is calm and relaxed at times and very "free" to move both his arms and his legs. Simply adorable. He even laughs his great belly laugh while splashing his mommy in the face. In the pool Daniel is able to do something he can't do as easily out of the pool, he is able to be independent. For a brief moment in time he is his own person and in his body and fully capable of moving it his way. I love the pool.

Daniel has been evaluated by the early intervention people again (this is standard every 6 months I think). It's just a bunch of paper work really but all the therapists come together and assess the progress that he is making (and he is making a LOT of progress) and they scale it to see what age range he is into for cognitive, social, motor etc. Well our Danny boy is in the 9 month range BUT with many areas he is expanding towards the 12 to 15 month range! He is really doing great. Every day he does something he didn't do the day before. It is great to see and hear. Some examples are: he waves and says "bye-bye," He stays on his hands and knees and rocks back and forth for quite a while, he rolls purposefully to get to something he wants. All really wonderful to see. Honestly, I don't know what he is going to do next but really I cannot wait to find out.

Amendment

In my last blog post, I mentioned where I hated that F'n family. I know that a few people (my husband included) thought that I was referring to the Rummel-Hudson family and that is not true. I was intending to refer to the family of diseases that plagues both Daniel and Schuylar.

I hope that makes sense to everybody now.

A Review, Of Sorts

I am not very good at reviewing things.

Normally, I don't have a very good objective outlook for things. I will either love something or hate it. I am not even very good when it comes to rating something on a scale of 1 to 5 or 10, I will usually pick the middle just to play it safe.

I don't know why it is really. Maybe I was just raised to not be that critical (though I do an excellent job of being critical of myself).

I wanted to discuss the book that I just finished reading. Maybe you have seen it. Maybe you have heard about it, and if you read this blog with any regularity then you know who the author is and some of what it is about. The book is Schuyler's Monster: A Father's Journey with His Wordless Daughter. The book stems from the blog that Mr. Rummel-Hudson started long before his daughter was born (long before there were blogs) and then continued to update all through his daughters struggle and diagnosis. Schuyler (Pronounced Skyler) has polymicrogyra which is not what Daniel has exactly but it is in the same family.

For the record I hate that fucking family. Every last one of the motherfuckers. They live all over the world and affect little children everywhere and I really would like to just kill off the whole clan.

But I digress.

I read the book and I liked it. Of course only in the way you can like something that is about exactly what you are going through and about sheer depression and disappointment. It was very well written and for the most part in the end it is a feel good book. Obviously it is not the end. Schuyler is still very much alive and thriving and so that is a positive like no other. I read it and as I was reading I immediately identified with the parents and their struggle. I also felt very strong that Jason should not read the book and I told him just that.

He was not very pleased with this. He wanted to know why and I told him--I didn't think that he had a good grasp of Daniel's disease. Of course (and this has NEVER happened before) I was wrong. I couldn't have been more wrong about that. Jason knows exactly what is wrong with Daniel and what may happen and what his life might be like, but Jason and I deal differently with things (always have) and while I openly fret/worry/disable at the thought of something bad, Jason doesn't go there. He genuinely takes every day one day at a time and doesn't go far into the future. I for one cannot imagine doing that but he does and thank god for that. I also thought that Jason might not be able to handle the book because Schuyler's dad talks a lot about god and his lack of belief in god after her diagnosis was found out. Though now that I read it I think Jason might actually get a good outlook from the book.

Who else would I recommend the book to? No one. Not that it is not a good book and well written but I think to go ahead and recommend it would not be in good taste. I will say this, it is far better than anything I could've written and if you are interested in reading more about the struggle of this family, this courageous little girl and what it all means then you should check it out.

I think each child in their own right has a story that needs telling. Some have others tell it for them and some go right on telling it for themselves. I know Daniel in his young life so far has his own story to tell but I fully expect that some day he will tell it.

Daniel is a lover and a dreamer and I suspect that when he gets older that he will turn to the written word to express himself and his own struggle with this disease. And let me tell you, when that happens I will rate it a 10 out of 10 and recommend it to everyone!

Baby spin doctor

Daniel talks a lot of baby talk: mama, dada, lala (we think, Alison). Just the other day, however, out of his mouth very clearly came: "Obama."

There you have it. Daniel has made his endorsement. And in case you were wondering, Ralph Nader entering the race doesn't seem to affect Daniel's position.

18 Months

Hard to believe that Daniel is 18 months old. Even harder to believe is that his sister will be 5 in just a little over a month! Where in the world does the time go? I cannot remember back to when they were so little and that time just keeps slipping away.

Tonight I looked at Daniel and saw a reflection of a little boy staring back at me. He is becoming quite the little "devil." He wants to grab anything and everything these days. He gets a little grin on his face that says, "I know that this is probably not a good idea but I want to do it anyway." I have actually had to say no to him--when he grabs my face it really hurts so I gently say no. He doesn't realize or doesn't care. He is growing so fast. They both are.

We went to Roanoke last week to see a new neurologist. While I realize that no neurologist is going to tell us what will happen in the future, at least this one was nice and spent time explaining just exactly what is wrong with Daniel, and put it in terms that we can understand: Computer terms!

He told us to think of Daniel's brain like a computer. A part of the computer is out of commission but you can still rewire the computer to get it to perform some of the tasks that the other part was doing. This rewiring though may slow the task down a bit and it will take longer to learn. Sometimes the task will not work either. Only time will tell--with Daniel, not the computer.

Coming from a family where the brother is a computer genius I could relate and actually felt confident that things were going to be better. Though honestly, I really would like to call tech support and just ask them to fix the damn thing already!

On the move

We've been reporting for a while now that Daniel enjoys rolling around on the floor, since he hasn't quite figured out crawling. He rolls from back-to-front to back-to-front to get where he wants to go.

Where Daniel has been wanting to go lately is his sister's lap ... or stomach, shoulders, whatever part he can grab. Daniel is clearly through with observing Alison's play; he's ready to join in the fun. It's pretty remarkable to see Daniel be sitting beside Alison on the floor and then, moments later, lunge for her with his arms outstretched. He seems to want to wrestle her.

Alison laughs when Daniel does this, but I can tell that she's slightly put off. Ever since Daniel has been paying attention to Alison, it's always been about her "putting on a show" for him. All of a sudden, her brother is bugging her! Can sibling rivalry be far behind?

(One last, related comment: Though Daniel doesn't crawl, he seems to be on the verge of figuring it out. He tries very hard to scoot forward when he's on his stomach. And If we set him up on his hands and knees, he can hold his balance pretty well for more than a few seconds.)

Hurray for Daniel

It's the little things in life that keep you going sometimes. So without further ado: Daniel clapped his hands together for the first time this weekend! We were all so very proud of him. I don't think he realized what a big deal it was but he was definitely happy that we were so happy. Sweet little boy. Now we just need to teach him to clap when his sister finishes with her "performances."

When

When will I accept that Daniel has to be the one with the horrible disease? When will I realize that this is what we all have to face everyday of our lives? When will others accept any child with a disability? When will we be able to not fight for more services, they will just be there? When will Daniel crawl? When will he walk? When will he realize that he is different and by that realization be saddened? When will others really realize his difference? When will I stop protecting him/shielding him for the world? When can I breath? When will it not hurt to read a story about another child with disabilities? When will my heart stop aching? When will I stop wanting more for my children? When will this nightmare end?

Missing Them

The new year has been relatively quiet and dare I say somewhat good? I have gotten a new job with the new year and it is incredibly exactly what I needed for a job.
However, it is full time.

Well, it is whatever amount of time I want it to be but we need the money so it needs to be full-time. This is fine with me because I like the work I am doing and it keeps me busy, but it is also difficult to leave my children for a full day when I haven't done that in so long.

I got spoiled when I was just teaching one class three days a week. I was so spoiled even that I think I took my time with them for granted--no, I know I did. Though out of this time away does come some good. I am now spending more quality time with them whereas before it was more quantity. I now realize how precious every moment is and want every moment to be special and free from any angst. I guess that is a good thing.

Most of all with the start of this new job (don't get me wrong, overall it is a good thing) is that I am afraid of missing Daniel's milestones. It is very hard to only "hear" about what happened during his day. He is doing so many new things everyday that I don't want to miss.

Lately, Daniel cannot be put at a table with anything within his reach or he will grab it. He just wants to grab anything. He is seriously trying to communicate with us and we "think" he has learned to say "all done." When you ask him his name he will (for the most part) say "Day-na," or "NaDa." He constantly babbles and loves, just LOVES to play mimic games with you-as long as he is in charge. He continues to roll over constantly and can manage to make his way around by just doing that. On his belly he so looks as though he wants to come toward you but just doesn't have it just yet. He has tried several new foods that he likes with new textures but I think his favorite of all of those is the Lentil soup I made-delicious. He is such a wonderful spirit. Both my kids are. It is very difficult to be around them and not be happy. I am enjoying that a lot more these days.

I know it will be sad if it happens that Daniel starts to crawl without me there to see but it would that sad too if Alison happened to learn something new without me there-and that has happened.

I've never been a stay-at-home mom type and I really admire those that are. Sometimes though I wish I could have it all. Sometimes I wish they didn't grow up so fast. Sometimes I just miss them.