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.
Friday, November 28, 2008
Monday, November 17, 2008
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.
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.
Thursday, November 6, 2008
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!
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!
Thursday, October 16, 2008
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.
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.
Tuesday, October 14, 2008
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.
Sunday, September 21, 2008
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:
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:
Saturday, September 6, 2008
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.
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.
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