Monday, January 28, 2008
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."
Wednesday, January 23, 2008
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?
Wednesday, January 9, 2008
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.
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.
Saturday, December 29, 2007
New Year Resolutions
Now that it is closer to the new year, I feel compelled to make some new year resolutions. However, this year will be drastically different from past new year's resolutions. Though I would love to have the weight loss and the personal finance security, I feel that those resolutions are not only unpredictable and in some ways unattainable but also somewhat shallow.
This year, my resolutions are a bit deeper:
1. I resolve to try to become a more patient mother. A mother that can stay calm whenever her 4 year old has become unglued. I want to be a mother that sets the right example for my children, to be a stable presence in the face of chaos. Though it won't be easy I am sure, I want to be the kind of mom that does not raise her voice to match her child's, but lowers her voice so her child can match her.
2. I resolve to try to become a more attentive mother. A mother who stays in the moment with her children. I want to be the mom who can forget all else (past, present and future) and just be with her kids.
3. I resolve to try not to be so hard on myself in regards to parenting. I will try to remember that I am doing the very best that I can, all that I can and giving all that I have. I will also try to remember how wonderful my children are and how they have gotten to that point, not from sheer luck (though some may believe that) but from parenting.
Well, what do you think?
Maybe I should have just stuck with the weight loss and all and while I will work on that as well (that is a constant resolution made everyday), I truly believe that these are the ones I need to focus on right now. Who knows how they will turn out. Who can predict anything anymore. I figure that if I have them written down for everyone to see though, that that will give me more incentive to really focus on them.
Of course there will always be next years end of the year montage as well, which will prove one way or the other if all of those resolutions actually made it into play. But then there is just the general one that I can definitely do that will cover all basis: Be thankful everyday for what I have.
I think that will be pretty easy:
This year, my resolutions are a bit deeper:
1. I resolve to try to become a more patient mother. A mother that can stay calm whenever her 4 year old has become unglued. I want to be a mother that sets the right example for my children, to be a stable presence in the face of chaos. Though it won't be easy I am sure, I want to be the kind of mom that does not raise her voice to match her child's, but lowers her voice so her child can match her.
2. I resolve to try to become a more attentive mother. A mother who stays in the moment with her children. I want to be the mom who can forget all else (past, present and future) and just be with her kids.
3. I resolve to try not to be so hard on myself in regards to parenting. I will try to remember that I am doing the very best that I can, all that I can and giving all that I have. I will also try to remember how wonderful my children are and how they have gotten to that point, not from sheer luck (though some may believe that) but from parenting.
Well, what do you think?
Maybe I should have just stuck with the weight loss and all and while I will work on that as well (that is a constant resolution made everyday), I truly believe that these are the ones I need to focus on right now. Who knows how they will turn out. Who can predict anything anymore. I figure that if I have them written down for everyone to see though, that that will give me more incentive to really focus on them.
Of course there will always be next years end of the year montage as well, which will prove one way or the other if all of those resolutions actually made it into play. But then there is just the general one that I can definitely do that will cover all basis: Be thankful everyday for what I have.
I think that will be pretty easy:
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| New Album 12/29/07 3:10 AM |
Wednesday, December 19, 2007
Hear Me Now
Daniel and I and my father traveled to Charlottesville yesterday to go to see the Audiologist.
This was a referral from the neurologist whom I have given up on. It was an appointment that we rescheduled several times due to timing and also because I didn't actually think there was anything wrong with Daniels hearing.
The appointment was for 8:30 in the morning so we all had to get up and out of the house early. Daniel is such a good passenger. He is so very sweet and just so very pleasant. He has no problems going to new places and meeting new people (even doctors who poke and prod at him). He did wonderfully and passed his hearing test with flying colors.
He has no problem hearing.
What we don't know and will not know until Daniel gets older is if Daniel has the ability to process what he hears. However, again I do not think that Daniel has a problem with this as well. He is communicating with us in more and more ways everyday and he is understanding more of what we say to him everyday.
Daniel is a smart little boy.
Very smart.
No one has told me any differently and even if they did, I wouldn't hear them.
This was a referral from the neurologist whom I have given up on. It was an appointment that we rescheduled several times due to timing and also because I didn't actually think there was anything wrong with Daniels hearing.
The appointment was for 8:30 in the morning so we all had to get up and out of the house early. Daniel is such a good passenger. He is so very sweet and just so very pleasant. He has no problems going to new places and meeting new people (even doctors who poke and prod at him). He did wonderfully and passed his hearing test with flying colors.
He has no problem hearing.
What we don't know and will not know until Daniel gets older is if Daniel has the ability to process what he hears. However, again I do not think that Daniel has a problem with this as well. He is communicating with us in more and more ways everyday and he is understanding more of what we say to him everyday.
Daniel is a smart little boy.
Very smart.
No one has told me any differently and even if they did, I wouldn't hear them.
Sunday, December 9, 2007
End of the year Montage
I have always liked watching those end of the year clip shows that piece together all of the happenings of the past year (good and bad) and set them to music. For some reason the music somehow makes even the bad stuff seem OK.
We are heading into the New Year at an amazing pace and I can't help to think of the past year and all that has happened in our lives--good and bad.
Now I don't have any music, but please don't let that hold back your applause at the end:
January 2007: Still in house in Chapel Hill and resigned to stay at my crummy job as well as in Chapel Hill for the foreseeable future, Jason and Lara refinance the terms of their home loan to pay off some serious dept. Lara becomes concerned when 5 month old Daniel is not rolling over or grabbing for toys.
February 2007: After learning our good friends in Chapel Hill were moving to Virginia for a job opportunity, Jason applies for Business Librarian job at James Madison University, but really just goes to see what it's about. We both know we aren't going to move to a place called Harrisonburg, VA right? Lara takes Daniel to the Pediatrician for 6 month checkup and voices her concerns and pediatrician agrees. Daniel is set up for Early intervention, a referral to a PM&R doctor.
March 2007: Daniel is seen by PM&R Doctor and referred to get MRI. Daniel starts physical therapy. Lara's Aunt Marilyn passes away March 1, 2007. Lara has the flu at the time. Lara's other Aunt is continuing chemo for her Lung Cancer. Towards the end of the month Jason gets offered the job at JMU. Lara looks at this as an opportunity to escape the hell that is her job and to change completely. Jason and Lara disagree on the best plan.
April 2007: Our little girl turns 4 on the 1st. No April Fools about that. Jason and Lara continue to ponder their options. Jason feels very confused and Lara does not. Lara badgers Jason to no end, that moving IS the right decision for the family. Jason accepts the job and the house goes up for sale. House sells in less than 1 week. Jason and Lara are steered into a contract by their less than helpful real estate agents, that they will later regret.
May 2007: Daniel has MRI of brain that shows smooth brain but no diagnosis given. Referred to neurologist and given no new news. Daniel has blood work done to look for genetic causes of delay. Jason and Lara start packing and realize that the contract closing date is set for Mid June and they were not planning to leave NC until end of June, the pleading starts. Jason and Lara go to Harrisonburg, VA for first time with the kids and find a place to live in one day.
June 2007: More pleading to be able to stay in house until the end of the month. Options are for family of 4 plus dog to move out and stay in Lara's parents two bedroom apartment or Jason's moms house with one extra bedroom and a part of the office, but it is a longer commute to school and work. Lara's parents are packing too to also move to VA to help with childcare and everything else. Jason get angrier and angrier when he realizes that our options are running out and that we have to move out on the 15th of June. Also very upset that even though the sale of the house yielded more than originally paid, that due to our refinancing when we thought that we would be in the house for a long time, we would owe money at the table. Owe a LOT of money. Dept keeps growing as we also pay for movers, first months rent and security deposit.
July 2007: Lara works last day of hell job on July 1, 2007 (Sunday) and then after work the whole family takes off to Harrisonburg, VA. Alison believes that the hotel we stay in that night is our new home and is quite impressed with it. Jason starts his new job on the 16th of July which gives the family time to check out where everything is along with getting unpacked.
August 2007: We get Daniel set up in early intervention in VA. We get both physical therapy and occupational therapy. Daniel has his one year well check. Referral made and expedited for neurologist at UVA. Found a school for Alison that looks really great though not Spanish speaking.
September 2007: Alison starts school, Lara actually teaching at JMU an intro to Nutrition class and loves it. Jason gets in swing of things at his new job. Lara's dad still talking about Ohio. Daniel goes for app with neurologist who was less then helpful. Later in the month neurologist gives diagnosis of Lissencephaly and Lara and Jason start this blog to help cope with the myriad of feelings.
October 2007: Jason and Lara search for answers for Daniel. Daniel continues to make progress with therapy and impresses the therapists and his family everyday! Both kids are amazing and are superheroes for Halloween.
November 2007: Lara is getting discouraged with neurologist's lack of attention to Daniel. Seriously considering dumping said neurologist for someone local and nicer. Thanksgiving comes way too fast and family heads to NC to spend with Jason's family. Lara falls down flight of stairs and injures her spleen and spends a week in the hospital in NC in the ICU!
December 2007: Holidays come up way too fast. Trying to explain to a 4 year old that we do not celebrate that holiday that everyone else in her school is talking about. Lara's Aunt Lois has to restart chemo for her lung cancer that we thought was gone. Family laying low for holidays to ring in the new year without a bang.
We are heading into the New Year at an amazing pace and I can't help to think of the past year and all that has happened in our lives--good and bad.
Now I don't have any music, but please don't let that hold back your applause at the end:
January 2007: Still in house in Chapel Hill and resigned to stay at my crummy job as well as in Chapel Hill for the foreseeable future, Jason and Lara refinance the terms of their home loan to pay off some serious dept. Lara becomes concerned when 5 month old Daniel is not rolling over or grabbing for toys.
February 2007: After learning our good friends in Chapel Hill were moving to Virginia for a job opportunity, Jason applies for Business Librarian job at James Madison University, but really just goes to see what it's about. We both know we aren't going to move to a place called Harrisonburg, VA right? Lara takes Daniel to the Pediatrician for 6 month checkup and voices her concerns and pediatrician agrees. Daniel is set up for Early intervention, a referral to a PM&R doctor.
March 2007: Daniel is seen by PM&R Doctor and referred to get MRI. Daniel starts physical therapy. Lara's Aunt Marilyn passes away March 1, 2007. Lara has the flu at the time. Lara's other Aunt is continuing chemo for her Lung Cancer. Towards the end of the month Jason gets offered the job at JMU. Lara looks at this as an opportunity to escape the hell that is her job and to change completely. Jason and Lara disagree on the best plan.
April 2007: Our little girl turns 4 on the 1st. No April Fools about that. Jason and Lara continue to ponder their options. Jason feels very confused and Lara does not. Lara badgers Jason to no end, that moving IS the right decision for the family. Jason accepts the job and the house goes up for sale. House sells in less than 1 week. Jason and Lara are steered into a contract by their less than helpful real estate agents, that they will later regret.
May 2007: Daniel has MRI of brain that shows smooth brain but no diagnosis given. Referred to neurologist and given no new news. Daniel has blood work done to look for genetic causes of delay. Jason and Lara start packing and realize that the contract closing date is set for Mid June and they were not planning to leave NC until end of June, the pleading starts. Jason and Lara go to Harrisonburg, VA for first time with the kids and find a place to live in one day.
June 2007: More pleading to be able to stay in house until the end of the month. Options are for family of 4 plus dog to move out and stay in Lara's parents two bedroom apartment or Jason's moms house with one extra bedroom and a part of the office, but it is a longer commute to school and work. Lara's parents are packing too to also move to VA to help with childcare and everything else. Jason get angrier and angrier when he realizes that our options are running out and that we have to move out on the 15th of June. Also very upset that even though the sale of the house yielded more than originally paid, that due to our refinancing when we thought that we would be in the house for a long time, we would owe money at the table. Owe a LOT of money. Dept keeps growing as we also pay for movers, first months rent and security deposit.
July 2007: Lara works last day of hell job on July 1, 2007 (Sunday) and then after work the whole family takes off to Harrisonburg, VA. Alison believes that the hotel we stay in that night is our new home and is quite impressed with it. Jason starts his new job on the 16th of July which gives the family time to check out where everything is along with getting unpacked.
August 2007: We get Daniel set up in early intervention in VA. We get both physical therapy and occupational therapy. Daniel has his one year well check. Referral made and expedited for neurologist at UVA. Found a school for Alison that looks really great though not Spanish speaking.
September 2007: Alison starts school, Lara actually teaching at JMU an intro to Nutrition class and loves it. Jason gets in swing of things at his new job. Lara's dad still talking about Ohio. Daniel goes for app with neurologist who was less then helpful. Later in the month neurologist gives diagnosis of Lissencephaly and Lara and Jason start this blog to help cope with the myriad of feelings.
October 2007: Jason and Lara search for answers for Daniel. Daniel continues to make progress with therapy and impresses the therapists and his family everyday! Both kids are amazing and are superheroes for Halloween.
November 2007: Lara is getting discouraged with neurologist's lack of attention to Daniel. Seriously considering dumping said neurologist for someone local and nicer. Thanksgiving comes way too fast and family heads to NC to spend with Jason's family. Lara falls down flight of stairs and injures her spleen and spends a week in the hospital in NC in the ICU!
December 2007: Holidays come up way too fast. Trying to explain to a 4 year old that we do not celebrate that holiday that everyone else in her school is talking about. Lara's Aunt Lois has to restart chemo for her lung cancer that we thought was gone. Family laying low for holidays to ring in the new year without a bang.
Saturday, December 1, 2007
Falling Up
I know it's been a while since our last post. It was not due to the fact that we were still digesting the turkey from Thanksgiving, but rather we were all on the mend (in one form or another).
From colds to spleen injuries, we have all been just barely getting by each day. I won't bore you with the details though.
Something I've been wanting to write about since before the Thanksgiving break is about the struggle I have been having and fear that I will continue to have for a long time in regards to Daniel's care. For one thing, his neurologist.
We do live in a smaller town and live not so close to a major hospital so when we moved here we knew we would have to deal with having all of Daniel's major medical care being taken care of at the big hospital that is an hour from here. No big deal really. As I said in previous posts I am getting very good at the driving to and from. The only problem lies in the people that are encountered to take care of Daniel. I am less than impressed. The more I deal with the lot of them, I am certain that even though they are a major institution, they offer less than any other institution of the same size or smaller. I am discouraged. I was actually told that to get Daniels MRI sent off to someone that I may need to do it myself! That to me is just unacceptable. How is it possible that such an institution/department/physician cannot do what is expected of them?
I have no problems getting angry with these doctors. I have no problems fighting for the right care for my child, but who knew that I would not only have to fight to get the work done but to do their work myself? Who knew I would have to climb up this ladder and fight as well as paint the picture too?! I cannot understand why this is. Why, in the future, we might (as a family) have to make a decision of where to live based on the availability and status of health care systems. Why should anyone? We have so much to consider already with schools, crime, jobs, money that we shouldn't have to deal with this other issue. I don't understand. Someone please explain it to me. Someone please tell me why I can't just take Daniel to a nearby doctor who will do his/her job and won't cause me to get this angry!
Whatever though, I will do what needs to be done. I will fight however hard and in whatever direction I must. Daniel deserves it. Both my kids deserve it. All kids deserve it.
From colds to spleen injuries, we have all been just barely getting by each day. I won't bore you with the details though.
Something I've been wanting to write about since before the Thanksgiving break is about the struggle I have been having and fear that I will continue to have for a long time in regards to Daniel's care. For one thing, his neurologist.
We do live in a smaller town and live not so close to a major hospital so when we moved here we knew we would have to deal with having all of Daniel's major medical care being taken care of at the big hospital that is an hour from here. No big deal really. As I said in previous posts I am getting very good at the driving to and from. The only problem lies in the people that are encountered to take care of Daniel. I am less than impressed. The more I deal with the lot of them, I am certain that even though they are a major institution, they offer less than any other institution of the same size or smaller. I am discouraged. I was actually told that to get Daniels MRI sent off to someone that I may need to do it myself! That to me is just unacceptable. How is it possible that such an institution/department/physician cannot do what is expected of them?
I have no problems getting angry with these doctors. I have no problems fighting for the right care for my child, but who knew that I would not only have to fight to get the work done but to do their work myself? Who knew I would have to climb up this ladder and fight as well as paint the picture too?! I cannot understand why this is. Why, in the future, we might (as a family) have to make a decision of where to live based on the availability and status of health care systems. Why should anyone? We have so much to consider already with schools, crime, jobs, money that we shouldn't have to deal with this other issue. I don't understand. Someone please explain it to me. Someone please tell me why I can't just take Daniel to a nearby doctor who will do his/her job and won't cause me to get this angry!
Whatever though, I will do what needs to be done. I will fight however hard and in whatever direction I must. Daniel deserves it. Both my kids deserve it. All kids deserve it.
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