I have been following a blog of a woman whose baby has been diagnosed with Trisomy 13 prenatally. This is a fatal condition where "conditions are not favorable for life" outside the womb. She is having to face the fact that her baby will most likely die after she gives birth to him. She, and her husband, are facing this with grace and faith. It is so amazing to see people going through these situations. They have so much faith. I am absolutely in awe of these how they are dealing with everything.
She has a video on her blog that shows a husband and wife going through the same thing. In the video, the baby is born and five days later the baby dies. It is a very real, very personal video. I feel priveledged in being able to view it. After the kids went to bed last night I asked Marty to watch it with me. Marty was a little hesitant, at first, but the vidoe ended up really bringing out some emotion in him. I told Marty that viewing the video really allowed me to put some things in my life in perspective. He, then, looked at me with tears in his eyes and told me how he feels so blessed to have Luke in his life. He said that he knows that God made Luke and Luke is perfect. He admitted that he lives a blessed life and he is so thankful for it.
It is so wonderful to have a moment like that with my husband. It does not happen often. I am just so thankful for the moment because it helped me see what is really going on inside my husband.
Tuesday, September 29, 2009
Sunday, September 27, 2009
Smiles and Acknowledgments
Luke is crawling now!!! He is actually getting on hands and knees and crawling. It is such a huge victory! I want Luke to take his development steps in order, even if he is late in taking them. I want him to crawl before someone tries to get him to walk. I just think that it is important for a baby to go through the steps God intended in development. Crawling helps the baby's brain develop.
I am just so proud of Luke. A lady at my church came up to me and said that the nursery workers at church are just so amazed with the progress he has made since being off the seizure meds. He has actually been making some social progress at the church. Today, he crawled up to a couple of the kids in his class and tried to play with them.
To me, knowing that Luke is moving forward is so comforting. So many of the worries and fears I had seem so petty now. I have started reading some other blogs of people who are going through so much more than I. Reading the blogs has given me a different perspective. I am so grateful for Luke. He is such an amazing little boy and there is no doubt in my mind that there is a reason he was born. I totally understand that life with a child with Cerebral Palsy and a "unknown" syndrome with autistic features is not always going to be easy, but I am just so thankful to have him.
I am just so proud of Luke. A lady at my church came up to me and said that the nursery workers at church are just so amazed with the progress he has made since being off the seizure meds. He has actually been making some social progress at the church. Today, he crawled up to a couple of the kids in his class and tried to play with them.
To me, knowing that Luke is moving forward is so comforting. So many of the worries and fears I had seem so petty now. I have started reading some other blogs of people who are going through so much more than I. Reading the blogs has given me a different perspective. I am so grateful for Luke. He is such an amazing little boy and there is no doubt in my mind that there is a reason he was born. I totally understand that life with a child with Cerebral Palsy and a "unknown" syndrome with autistic features is not always going to be easy, but I am just so thankful to have him.
Monday, September 7, 2009
A Different Perspective
I wrote this last year when I was teaching first grade at Bennett Russell Elementary School...
Having a son like Luke has caused me to think about so many things. How will he be perceived? What will his experience in school be like? What will be his diagnosis? What will my future be like with a son with disabilitiies?In thinking about my own experience, I begin to think about other children who struggle in school, whether they have a disability or not. There are a couple students in my class who struggle. I find myself wondering how that must be for them. They are so sweet and so young to already have struggled so much academically. Sometimes, teachers can view these kind of students as almost a heavy weight of sorts. These students tend to be a bit more high maintenance. On the surface, they seem to have no motivation for learning, and because of this they can have behavior issues. Sometimes these students are viewed as lazy and as goof-offs. I have begun to look deeper than the surface with these students.
Imagine for a moment that your husband or wife took you to a place where you were made to play an instrument like the violin or piano. You have no idea how to play, and you are being told that you HAVE to play. When you ask why, The people just tell you "because I said so". They put a piece of music in front of you, give you the instrument, and expect you to play right then and there. You've never really wanted to play the instrument and have trouble finding a reason to play. So, you struggle because you can't read music, the instrument is just plain confusing, and you really don't have a good reason to try. You are frustrated and the people are frustrated with you. How aweful that would feel! Then, you begin to feel bad about yourself, and to make matters worse, you are put with the group just like you who have no real motivation and are struggling and frustrated. You are made to play that instrument during your 90 minute instrument block. You have an instrumental intervention specialist, and you go to a 20 minute instrument intervention group every day. All the while, no one has helped you understand the reasoning for learning to play in the first place.
You see, all of the best instrumentalists and musicians could teach you, but until you begin to motivate yourself, you will never truly learn how to play.It is the same with these students. Until you prove to them that it is worth it TO THEM to learn, they will never reach their full potential. Oh, they may learn, but may only be learning to get by. Instead, let's show them that they can learn and that the only limits on them is the limits they put on themselves.
Having a son like Luke has caused me to think about so many things. How will he be perceived? What will his experience in school be like? What will be his diagnosis? What will my future be like with a son with disabilitiies?In thinking about my own experience, I begin to think about other children who struggle in school, whether they have a disability or not. There are a couple students in my class who struggle. I find myself wondering how that must be for them. They are so sweet and so young to already have struggled so much academically. Sometimes, teachers can view these kind of students as almost a heavy weight of sorts. These students tend to be a bit more high maintenance. On the surface, they seem to have no motivation for learning, and because of this they can have behavior issues. Sometimes these students are viewed as lazy and as goof-offs. I have begun to look deeper than the surface with these students.
Imagine for a moment that your husband or wife took you to a place where you were made to play an instrument like the violin or piano. You have no idea how to play, and you are being told that you HAVE to play. When you ask why, The people just tell you "because I said so". They put a piece of music in front of you, give you the instrument, and expect you to play right then and there. You've never really wanted to play the instrument and have trouble finding a reason to play. So, you struggle because you can't read music, the instrument is just plain confusing, and you really don't have a good reason to try. You are frustrated and the people are frustrated with you. How aweful that would feel! Then, you begin to feel bad about yourself, and to make matters worse, you are put with the group just like you who have no real motivation and are struggling and frustrated. You are made to play that instrument during your 90 minute instrument block. You have an instrumental intervention specialist, and you go to a 20 minute instrument intervention group every day. All the while, no one has helped you understand the reasoning for learning to play in the first place.
You see, all of the best instrumentalists and musicians could teach you, but until you begin to motivate yourself, you will never truly learn how to play.It is the same with these students. Until you prove to them that it is worth it TO THEM to learn, they will never reach their full potential. Oh, they may learn, but may only be learning to get by. Instead, let's show them that they can learn and that the only limits on them is the limits they put on themselves.
Wednesday, September 2, 2009
The First Diagnosis
Today's doctor appointment went well. We finally have a diagnosis-
"A not-yet-identified syndrome with autistic features & Cerebral Palsy"
The diagnosis is pretty vague, but it will give up the ability to sign up for the Med Waiver Program when he turns 3 and we will be able to try to get SSI. That's all I wanted. I want Luke to be able to receive a few specific therapies when he gets a bit older. This diagnosis will help him get these services.
I honestly feel exhausted. I have much more to write, but really little energy to write it with. So, I will save it for another time. Finally- a peace of sorts.
"A not-yet-identified syndrome with autistic features & Cerebral Palsy"
The diagnosis is pretty vague, but it will give up the ability to sign up for the Med Waiver Program when he turns 3 and we will be able to try to get SSI. That's all I wanted. I want Luke to be able to receive a few specific therapies when he gets a bit older. This diagnosis will help him get these services.
I honestly feel exhausted. I have much more to write, but really little energy to write it with. So, I will save it for another time. Finally- a peace of sorts.
Immunizations and Today's Doctors Appointment
Prior to last week, Luke has not had any immunizations. I have done some research supporting immunizations as well as some research not supporting giving immunizations to children. When Luke was born, I decided that I did not want to take chances with immunizations.
He turned two a couple weeks ago. I know that he will be going to a pre-k program in two years, so (with much reservation) I took him to get his first immunization. During the appointment I expressed that I was worried about it because I didn't want to ruin the good thing we had going. Luke spent the first 15 months or so of his life chronically sick. He seemed to always be congested and always seemed to have problems breathing. After beginning the gluten free and dairy free diet and giving him supplements, Luke's health drastically improved. He has not been sick since early spring this year (2009). I was worried that giving an immunization would cause his health to regress. Even with my reservations, I chose to allow him to receive the first Hep B shot.
It has been less than a week and he is sick. He is congested and has been running a fever for two days. So, is this just a coincidence? Would he have gotten sick anyway? or... was the immunization the cause of the sickness? I don't believe that the immunization caused the specific illness, but I do believe that it caused Luke's immune system to struggle, therefor, his body could not fight the germ that was introduced this past week. So, now, Luke is feeling yuck, I am feeling yuck, and so is Sydney.
I don't think I have posted my full explanation of beliefs about immunizations. I may have to do that soon.
I have an appointment with Luke's doctor today to talk about diagnosis. I am feeling a bit stressed about. It's a long story as to why I am stressed. I do not wish to share the story. I hope it goes well... I really wish my husband were going with me.
He turned two a couple weeks ago. I know that he will be going to a pre-k program in two years, so (with much reservation) I took him to get his first immunization. During the appointment I expressed that I was worried about it because I didn't want to ruin the good thing we had going. Luke spent the first 15 months or so of his life chronically sick. He seemed to always be congested and always seemed to have problems breathing. After beginning the gluten free and dairy free diet and giving him supplements, Luke's health drastically improved. He has not been sick since early spring this year (2009). I was worried that giving an immunization would cause his health to regress. Even with my reservations, I chose to allow him to receive the first Hep B shot.
It has been less than a week and he is sick. He is congested and has been running a fever for two days. So, is this just a coincidence? Would he have gotten sick anyway? or... was the immunization the cause of the sickness? I don't believe that the immunization caused the specific illness, but I do believe that it caused Luke's immune system to struggle, therefor, his body could not fight the germ that was introduced this past week. So, now, Luke is feeling yuck, I am feeling yuck, and so is Sydney.
I don't think I have posted my full explanation of beliefs about immunizations. I may have to do that soon.
I have an appointment with Luke's doctor today to talk about diagnosis. I am feeling a bit stressed about. It's a long story as to why I am stressed. I do not wish to share the story. I hope it goes well... I really wish my husband were going with me.
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