I have dreams and I know that Jason does as well as everyone else in my family. I have dreams of Daniel running.
It's almost funny because even in my dreams I remind myself that Daniel can't even walk let alone run, but in my dreams he runs! He runs fast too. I always find myself explaining to whoever is there with me in the dream that he doesn't even walk! I tell them that he just runs but doesn't put it all together and realize that he can do both. It always seems to me to be so real and true and even second nature for him to run in my dream.
When I wake up I am often confused and have to remind myself of the reality of the situation. Often I can shrug it off and just move on, but there are some times when I just become very sad.
I just want one of my dreams to come true someday, just one.
Thursday, December 17, 2009
Thursday, November 26, 2009
Thanksgiving Day
I am thankful for so many things this year.
First, I am thankful for this Thanksgiving especially, because for the first time in a few years I am spending Thanksgiving with my family and we are all healthy!
Next, I am so thankful for my children who are both healthy and happy and simply wonderful!
I am also very thankful for my wonderful husband who, while being the very best husband a woman could ever ask for, he is the most wonderful and caring father my children or any child could ever have.
I am so thankful for my parents, they are just the best parents with their love, support, generosity and my children benefit from them every day.
I am thankful for my brother who, even though he lives far away, is still my very best friend and major supporter.
Finally, I am thankful for all the people in our lives: In-laws, extended family, close friends. Without all of you we would not be here.
In my heart of hearts I truly believe that it is the people you surround yourself with who get you through the day.
Happy Thanksgiving everyone!
First, I am thankful for this Thanksgiving especially, because for the first time in a few years I am spending Thanksgiving with my family and we are all healthy!
Next, I am so thankful for my children who are both healthy and happy and simply wonderful!
I am also very thankful for my wonderful husband who, while being the very best husband a woman could ever ask for, he is the most wonderful and caring father my children or any child could ever have.
I am so thankful for my parents, they are just the best parents with their love, support, generosity and my children benefit from them every day.
I am thankful for my brother who, even though he lives far away, is still my very best friend and major supporter.
Finally, I am thankful for all the people in our lives: In-laws, extended family, close friends. Without all of you we would not be here.
In my heart of hearts I truly believe that it is the people you surround yourself with who get you through the day.
Happy Thanksgiving everyone!
Friday, November 6, 2009
Wheelchair Bound
Daniel is thoroughly enjoying school. He loves going on the bus and from the daily reports we get, it appears he is almost always smiling and having a great time at school. Really nothing more that a parent could ask for.
As for Daniel's mobility, well that is moving along (no pun intended). He still scoots around the house (very fast I may add) and he can stand with assistance. Yesterday in his daily report, we found a note asking us to set up a time to meet with the wheelchair vendor. This has struck a chord with me. It is not that we all don't believe that someday Daniel will walk, because we do. It is more that he is not walking now and the bigger he gets (and he is a big boy) the harder it is to move him and truthfully no stroller is big enough for him.
I realize all of this and if it were anyone else's child I would encourage those parents to make themselves and their child more comfortable. But it is not anyone else, it is us and it is Daniel. Jason--ever the positive one in this relationship reminded me that it is not a life sentence and that one day Daniel will walk. My biggest fear is that Daniel will think we are giving up on him. We are so not! The last thing we would ever do is give up on our boy. Our boy who will one day very soon be walking around and tearing the place up.
As for Daniel's mobility, well that is moving along (no pun intended). He still scoots around the house (very fast I may add) and he can stand with assistance. Yesterday in his daily report, we found a note asking us to set up a time to meet with the wheelchair vendor. This has struck a chord with me. It is not that we all don't believe that someday Daniel will walk, because we do. It is more that he is not walking now and the bigger he gets (and he is a big boy) the harder it is to move him and truthfully no stroller is big enough for him.
I realize all of this and if it were anyone else's child I would encourage those parents to make themselves and their child more comfortable. But it is not anyone else, it is us and it is Daniel. Jason--ever the positive one in this relationship reminded me that it is not a life sentence and that one day Daniel will walk. My biggest fear is that Daniel will think we are giving up on him. We are so not! The last thing we would ever do is give up on our boy. Our boy who will one day very soon be walking around and tearing the place up.
Tuesday, October 6, 2009
School days
Each day, Daniel's teacher sends home a note to let us know about his day. Today's note made me grin widely:
Daniel had a good day today. He has a sensory group with our therapists and worked on colors and fall leaves. He also visited the library. His favorite time today was by far enjoying lunch with his friends. He laughed and laughed as they shared looks. He also said POPCORN very clearly during lunch.
Sunday, September 27, 2009
Shining Daniel
It has been busy to say the least. The kids have been in school and there are several activities at night as well.
Daniel is doing very well in school. We get a daily report that always mentions his smile or good nature and how much he enjoyed the day. He truly LOVES school.
His language has been growing every day. He is trying to talk more and more and is learning new words as well. Sometimes he babbles in what seems like a true sentence. He is also learning to chew better and has picked up a new habit of hitting (this is not really something we are proud of).
He is most definitely a 3 year old with his short attention span and his ability to throw a fit if he does not like something. This new behavior comes unexpectedly but just like any other child Daniel needs to be disciplined. This is difficult as we have not needed to do this before for him so he is not used to our stern and firm voices telling him that hitting is not OK.
This weekend we took Daniel to a carnival on campus geared toward children with disabilities. The program sponsoring the event is a program that provides community based adaptive PE to children and adults. It was interesting but very clear that it was not for Daniel. He cannot stand or walk and so all the activities that were offered were not appropriate for him.
Daniel has a long way to go. The director of the program asked us what our goals for Daniel were as his parents. I stated matter-of-fact, "isn't it obvious?" I want him to walk. More so, I want it all. I want him to do everything. Too much to ask?
Daniel is doing very well in school. We get a daily report that always mentions his smile or good nature and how much he enjoyed the day. He truly LOVES school.
His language has been growing every day. He is trying to talk more and more and is learning new words as well. Sometimes he babbles in what seems like a true sentence. He is also learning to chew better and has picked up a new habit of hitting (this is not really something we are proud of).
He is most definitely a 3 year old with his short attention span and his ability to throw a fit if he does not like something. This new behavior comes unexpectedly but just like any other child Daniel needs to be disciplined. This is difficult as we have not needed to do this before for him so he is not used to our stern and firm voices telling him that hitting is not OK.
This weekend we took Daniel to a carnival on campus geared toward children with disabilities. The program sponsoring the event is a program that provides community based adaptive PE to children and adults. It was interesting but very clear that it was not for Daniel. He cannot stand or walk and so all the activities that were offered were not appropriate for him.
Daniel has a long way to go. The director of the program asked us what our goals for Daniel were as his parents. I stated matter-of-fact, "isn't it obvious?" I want him to walk. More so, I want it all. I want him to do everything. Too much to ask?
Wednesday, August 19, 2009
Putting words together
My boy will turn 3 in a few days but still is nowhere near a normal toddler in terms of his vocabulary or language development. Not a problem, though. Daniel manages to get his message across with a few choice infantile utterances. "Bah-bah" for good-bye, for instance... "Car-car" for going in the car...
This past Saturday morning, I was loading up the van with a few bags and suitcases for a brief trip. As I was going in and out of the house, Danny watched me like he was following a tennis match. Back and forth, back and forth from the house to the driveway.
Suddenly, with all the effort he could muster, Daniel exclaimed, "Go... bah-bah!"
My heart melted.
Monday, August 3, 2009
Healthcare reform?
Give me a minute as I need to climb upon my personal soapbox. Oh good, there now here I go.
I had the pleasure of listening to one of President Barack Obama's town hall meetings on my satellite radio the other day. I love listening to this guy speak. He clearly makes sense and has nothing but the best intentions for this health care reform. But you know what they say about good intentions right?
Health care in this country has an affect on me in two ways. One as a health care provider and two as a consumer. For our purposes here, I am the consumer as is my entire family. Almost all of us in our small family have some underlying condition. It is quite obvious that Daniel has an underlying condition and that scares the SHIT out of me.
The president wants for every American to be able to obtain health care no matter if you have a job or a preexisting condition. This I believe is a great idea, in fact an idea that is way past its time. However, my concern seems to be a reality and that is that this "reform" bill that will someday go through the motions and become law will not look like what the president or any right minded individual had in mind. Why? Well, because there are several thousand lobbyists right now sitting down and getting their own interests and ideas into the bill. Then come fall, or whenever the congressional staff goes back to work, the bill that may or may not be passed will look so watered down that maybe if we are lucky, some families will have some benefit from it.
I am not under a spell of belief that Mr. Obama's reform will do a damn bit of difference for me or for my family. Nor at this point do I need to worry about that. For all our financial misfortunes over the years, we as a family have been fortunate enough to have good health care. Not the so called "Cadillac" plans but good--maybe more of a "Dodge" plan. And god willing we will be able to keep this up. However, should Jason lose his job or even one of us (god forbid) have a lengthy stay in the hospital then we are done--bankrupt and severely in debt. I suspect that is the truth for many Americans out there.
Or maybe Jason gets another job someday with different insurance and they look at Daniel with his underlying condition and deny him. What do we do then? Like I said, we have been lucky. We have had a majority of our health care bills taken care of and we have been able to not go into debt but I cannot see into the future and with all of Daniels specialists, who knows. Like many Americans I live in this fear everyday. I know that no country has perfect health care, including our country. We may think we do but we don't. How can we when there are literally millions of families and children without any health coverage? How can we when hardworking families can go into debt just by getting sick? In a perfect health care system, this wouldn't happen: http://www.thisamericanlife.org/Radio_Episode.aspx?episode=386
I had the pleasure of listening to one of President Barack Obama's town hall meetings on my satellite radio the other day. I love listening to this guy speak. He clearly makes sense and has nothing but the best intentions for this health care reform. But you know what they say about good intentions right?
Health care in this country has an affect on me in two ways. One as a health care provider and two as a consumer. For our purposes here, I am the consumer as is my entire family. Almost all of us in our small family have some underlying condition. It is quite obvious that Daniel has an underlying condition and that scares the SHIT out of me.
The president wants for every American to be able to obtain health care no matter if you have a job or a preexisting condition. This I believe is a great idea, in fact an idea that is way past its time. However, my concern seems to be a reality and that is that this "reform" bill that will someday go through the motions and become law will not look like what the president or any right minded individual had in mind. Why? Well, because there are several thousand lobbyists right now sitting down and getting their own interests and ideas into the bill. Then come fall, or whenever the congressional staff goes back to work, the bill that may or may not be passed will look so watered down that maybe if we are lucky, some families will have some benefit from it.
I am not under a spell of belief that Mr. Obama's reform will do a damn bit of difference for me or for my family. Nor at this point do I need to worry about that. For all our financial misfortunes over the years, we as a family have been fortunate enough to have good health care. Not the so called "Cadillac" plans but good--maybe more of a "Dodge" plan. And god willing we will be able to keep this up. However, should Jason lose his job or even one of us (god forbid) have a lengthy stay in the hospital then we are done--bankrupt and severely in debt. I suspect that is the truth for many Americans out there.
Or maybe Jason gets another job someday with different insurance and they look at Daniel with his underlying condition and deny him. What do we do then? Like I said, we have been lucky. We have had a majority of our health care bills taken care of and we have been able to not go into debt but I cannot see into the future and with all of Daniels specialists, who knows. Like many Americans I live in this fear everyday. I know that no country has perfect health care, including our country. We may think we do but we don't. How can we when there are literally millions of families and children without any health coverage? How can we when hardworking families can go into debt just by getting sick? In a perfect health care system, this wouldn't happen: http://www.thisamericanlife.org/Radio_Episode.aspx?episode=386
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