I recently read a very touching and inspiring book about a mother who have given birth to twins at 23 gestation. She begged to have the doctors leave them be, knowing full well that they would either die or live with very bad complications. She was entirely right but how she dealt with it was entirely different from what she ever expected. If you would like to read it as well the name is "This Lovely Life".
The mother of the twins also has an older child too. She tries to find a way to explain to the then 3 year old about the events that have taken place. She buys her a book called "Views from Our Shoes: Growing up with a brother or sister with special needs".
I thought that this book might be good for Alison. For a long time I have tried to find something that could help Alison understand why her brother is different. She gets it at a certain level but (just like her mom and dad) there is a lot that I know she has questions about.
This particular book shares stories from children 4-13 who have a brother or sister with special needs. There is a lot in the book that goes way over her head and would go over a lot of adults' heads as well. The idea is for her to be able to identify with others who are going through similar family dynamics, and to broaden her vocabulary to encourage her to talk about how she feels about her brother. Alison was so inspired by some of the stories in this book that she decided to write her own:
Alison Sokoloff, 6
My name is Alison Sokoloff. My baby brother is Danny. My brother has special needs. Sometimes my brother gets into trouble. One time my brother grind his teeth. At first I laughed but then I got mad. My brother is still little. I love my brother.
Alison likes to ride her bike, get the mail and play basketball and almost got in the net.
Wednesday, July 29, 2009
Friday, July 17, 2009
Lucky Stars
Daniel's last day of summer school was today and by all accounts he had a great time! He thoroughly enjoyed school and even loved riding on the bus. He came home some days with paint somewhere on his body, but every day with a smile on his face. It was a delight to see.
Today, for the last day of summer school, there was a Luau (even though it rained). Daniel and his classmates sat on the cafeteria floor in their swimsuits and swim trunks and listened to music. I got a chance to see some of Daniel's classmates and the family members as well.
Some of Daniel's classmates are clearly in need of more care then Daniel. Some require wheelchairs, tube feedings and oxygen. Through it all though, the parents/caregivers are smiling, happy and take it all in stride. I look at them and wonder if I could do that. Could I take care of a child with such special needs?
To me, Daniel is a far cry from these children as far as his needs are concerned. Daniel does not need oxygen or to be fed from a tube and he is not in a wheelchair. But I do understand how these parents do it. I can totally see myself looking at any one of those children if they were mine and saying "at least he/she is not..." I get that. I get that each and every thing is looked upon as lucky it isn't worse. Because, yes it could be far far worse. And even though those other children appear to be worse off than Daniel, they are all really lucky.
Daniel's teacher told me that there would be a new 4th grader attending school in the fall. He had a motor vehicle crash in March. I looked this up online and this little boy was flown from his vehicle onto the interstate. No seat belt. This boy--very lucky.
Today, for the last day of summer school, there was a Luau (even though it rained). Daniel and his classmates sat on the cafeteria floor in their swimsuits and swim trunks and listened to music. I got a chance to see some of Daniel's classmates and the family members as well.
Some of Daniel's classmates are clearly in need of more care then Daniel. Some require wheelchairs, tube feedings and oxygen. Through it all though, the parents/caregivers are smiling, happy and take it all in stride. I look at them and wonder if I could do that. Could I take care of a child with such special needs?
To me, Daniel is a far cry from these children as far as his needs are concerned. Daniel does not need oxygen or to be fed from a tube and he is not in a wheelchair. But I do understand how these parents do it. I can totally see myself looking at any one of those children if they were mine and saying "at least he/she is not..." I get that. I get that each and every thing is looked upon as lucky it isn't worse. Because, yes it could be far far worse. And even though those other children appear to be worse off than Daniel, they are all really lucky.
Daniel's teacher told me that there would be a new 4th grader attending school in the fall. He had a motor vehicle crash in March. I looked this up online and this little boy was flown from his vehicle onto the interstate. No seat belt. This boy--very lucky.
Friday, July 10, 2009
Done Differently
Jason won a trip to visit Pixar studios in Emmeryville, CA a while back.
While this was very exciting, we were at first very cautious in admitting to the prize. It meant two full nights away from our children.
We were mostly concerned about Daniel.
It is very easy to let Alison stay with her grandma and papa but Daniel had never done this before nor had grandma and papa watched both kids overnight and for more than one night. We had our concerns.
None of it had to do with my parents capability, it was our own hangups that made us hesitate.
So, Jason took a plunge and asked the travel agent who would be booking the trip if we could bring the kids along too. They said yes.
Then we thought, 'well how often do we get a free flight for all four of us to the West Coast, let's make it our vacation.'
The prospect of a real family vacation excited us. We were hesitant but asked about the idea of extending the trip to a full week. They said yes.
We thought they said yes and they were going to pay for the whole week. However, reading the fine print we found out we were wrong. So, knowing that we could never afford the hotel room in San Fran for the remainder of the week, we looked into visiting family that live in Oregon and Washington.
We made plans, albeit very unmanageable plans to drive up (taking nearly 2 days) and visit a cousin of mine, an uncle of Jason's and my brother and sister-in-law. Then we were going to fly back from Seattle in the early morning of our original flight home date and catch the flight from San Fran to Wash/DC and then drive the 2.5 hours home that night.
It started to feel less and less like a relaxing vacation and we both just couldn't fathom having to lug all our stuff, two kids and ourselves all the way across the country and not stay put.
We looked for ways to make it better. We had tremendous monetary help from both my parents and brother for the added flight and an added stay at a hotel midway on our drive up the coast. Also, there was the expense of a rental car and the added cost of dropping it off at a different airport. Or we could fly up to Seattle from San Fran, again costing an arm and a leg. But the main part that we couldn't get past was the thought of all the traveling and the traveling with children.
So, less than one week before our planned "vacation," we called it off and let down ourselves, our family and our friends.
Last night I asked Jason if we would have done it differently if Daniel was not disabled. He said the answer I was thinking-yes. We would have. We would have just done the trip as is, the two of us going away for two nights and left the kids with my parents. If Daniel could walk and talk as any other normal 2 and a half year old can, we would have felt more comfortable with leaving them for two nights. He would have understood what we were doing had we explained it to him.
It has also been bugging me, would we have done it differently--what we had planned--if Daniel wasn't disabled? Would we have felt more at ease with doing our trip as planned with the driving and the flying? Maybe, I cannot say for sure. I am pretty sure that traveling with two kids ages 6 and 2.5 would be difficult no matter what. I know that traveling with just one child on a plane is difficult and not even across the country so I don't believe that it would be any easier despite him not being disabled but what if?
My biggest fear is that I let Daniel down. I fear I did not give him enough credit nor did I give Alison or my parents enough credit. I did not have faith. Faith that we could leave Daniel and both kids with their grandparents for two nights, faith that had we gone through with it that our kids could have handled it with all the grace that comes with traveling that long. Faith that I myself could have dealt with it despite my own anxiety about flying. I let them all down and for that I own everyone a huge apology but to Daniel I owe more, I owe him my confidence.
While this was very exciting, we were at first very cautious in admitting to the prize. It meant two full nights away from our children.
We were mostly concerned about Daniel.
It is very easy to let Alison stay with her grandma and papa but Daniel had never done this before nor had grandma and papa watched both kids overnight and for more than one night. We had our concerns.
None of it had to do with my parents capability, it was our own hangups that made us hesitate.
So, Jason took a plunge and asked the travel agent who would be booking the trip if we could bring the kids along too. They said yes.
Then we thought, 'well how often do we get a free flight for all four of us to the West Coast, let's make it our vacation.'
The prospect of a real family vacation excited us. We were hesitant but asked about the idea of extending the trip to a full week. They said yes.
We thought they said yes and they were going to pay for the whole week. However, reading the fine print we found out we were wrong. So, knowing that we could never afford the hotel room in San Fran for the remainder of the week, we looked into visiting family that live in Oregon and Washington.
We made plans, albeit very unmanageable plans to drive up (taking nearly 2 days) and visit a cousin of mine, an uncle of Jason's and my brother and sister-in-law. Then we were going to fly back from Seattle in the early morning of our original flight home date and catch the flight from San Fran to Wash/DC and then drive the 2.5 hours home that night.
It started to feel less and less like a relaxing vacation and we both just couldn't fathom having to lug all our stuff, two kids and ourselves all the way across the country and not stay put.
We looked for ways to make it better. We had tremendous monetary help from both my parents and brother for the added flight and an added stay at a hotel midway on our drive up the coast. Also, there was the expense of a rental car and the added cost of dropping it off at a different airport. Or we could fly up to Seattle from San Fran, again costing an arm and a leg. But the main part that we couldn't get past was the thought of all the traveling and the traveling with children.
So, less than one week before our planned "vacation," we called it off and let down ourselves, our family and our friends.
Last night I asked Jason if we would have done it differently if Daniel was not disabled. He said the answer I was thinking-yes. We would have. We would have just done the trip as is, the two of us going away for two nights and left the kids with my parents. If Daniel could walk and talk as any other normal 2 and a half year old can, we would have felt more comfortable with leaving them for two nights. He would have understood what we were doing had we explained it to him.
It has also been bugging me, would we have done it differently--what we had planned--if Daniel wasn't disabled? Would we have felt more at ease with doing our trip as planned with the driving and the flying? Maybe, I cannot say for sure. I am pretty sure that traveling with two kids ages 6 and 2.5 would be difficult no matter what. I know that traveling with just one child on a plane is difficult and not even across the country so I don't believe that it would be any easier despite him not being disabled but what if?
My biggest fear is that I let Daniel down. I fear I did not give him enough credit nor did I give Alison or my parents enough credit. I did not have faith. Faith that we could leave Daniel and both kids with their grandparents for two nights, faith that had we gone through with it that our kids could have handled it with all the grace that comes with traveling that long. Faith that I myself could have dealt with it despite my own anxiety about flying. I let them all down and for that I own everyone a huge apology but to Daniel I owe more, I owe him my confidence.
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