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.