According to most everyone coming in contact with Jess, he is changing. Small but good changes! He seems more aware of his environment. Amanda held his arm while he painted a J on his paper in art this week. She is so good and patient with him at school and I know he is grateful to her for their companionship. We also have Daniel on Thursday who takes him to the horse arena and swimming every week. He always makes me smile with a joke or two. We have the best caregivers in the valley! They are just like family.
Jess was able to ride the horse around cones set up in the arena this week. The volunteers all agree it is so much easier to support him. His trunk is getting stronger and his eyes are more focused straight forward. He still has to ride with the neck brace and with 4 people at his side. We are so thankful to the volunteers that show up twice a week.
We made his grandma cry the other night as she watched me ask him to kick his leg up and he responded with a couple of huge kicks with each leg while sitting in his chair. At times he is so responsive and tries so hard to do what he is asked. At other times I know he is just so frustrated he just says to heck with it or maybe he is off with the angels running through some beautiful field.
I had Leslie, the speech therapist from Burley, come back last Friday to help me with evaluating Jess’ swallow. She said she could see lots of little changes in him since her last visit in March. We decided to try another way of having him say “yes” and “no” with his hand. He opens his left hand quickly when asked so we are asking him to open his hand for yes and close it for no. It seems to be more consistent than eye blinks. She also is having me feed him bigger bites of pureed food and more at one time. It would be so wonderful to get rid of the feeding tube. She told me to work on him sticking out his tongue and puckering his lips. Voice and swallow use so many muscles we don’t even think about.
We still think we are going to wake up one morning and Jess will be back with incredible stories of where he has been. We realize that would truly be a miracle. But, don't miracles happen every day?
Happy Halloween!
Friday, October 28, 2005
Friday, October 21, 2005
October 21st, 9:00 p.m
This was an interesting week for Jess and I. Amanda was treated to a Cheryl Crow concert in Boise on Tuesday and Wednesday by her fiancee' so Jess and I hung out alone but together. We attended school on Tuesday and to be honest it was very difficult for me. All those energetic kids in the halls with so many questioning looks at Jess and I as we rolled down the halls to his three different classes. He did open his hand on the keyboard in his computer class and held a paintbrush in his art class. Jess tries so hard to participate and wants so badly to talk. I can't imagine how frustrating his world must be. We are lucky the law state he can attend school until he turns 22. At least he is around kids and feels their energy and he does get some speech, occupational and physical therapy.
Wednesday we drove to Twin Falls to attend a meeting regarding what Jess qualifies for from Medicaid. When Jess turned 18 he became an adult so we had to hire a lawyer to establish guardianship so we could make decisions for him. Medicaid has a waiver program called the Developmental Disability Waiver which is suppose to help people with disablities receive financial help with therapies and care. But, just like we found out with the insurances we purchased, they have so many rules and all of that fine print to make sure you can't recover any of what you contributed to for all of those years. It was amazing to sit in this meeting! And, nobody is really sure what the rules are but they make it clear that they can't bend them. I won't go into details but again I remind you to make sure you understand the policies you buy and beware of the system set up in our government that we all pay into. Where does all of that money go I wonder? When one door closes you just have to find another one that is open. And, trust. I liked these rules so I thought I would share them with you:
TEN RULES FOR BEING HUMAN
You will receive a body. You may like it or hate it but it is yours for the entire time...this time around.
You will learn lessons. You are enrolled in a full time informal school called life. Each day in this school you will have the opportunity to learn lessons. You may like the lessons or think them irrelevant or stupid.
There are no mistakes only lessons. Growth is a process of trial and error experimentation. The 'failed' experiments are as much a part of the process as the experiment that ultimately 'works'.
A lesson is repeated until it is learnt. A lesson will be presented to you in various forms until you have learnt it. When you have learnt it you can then go on to the next lesson.
Learning lessons does not end. There is no part of life that does not contain its lessons. If you are alive there are lessons to be learnt.
'There' is no better than 'here'. When your 'there' has become 'here' you will simply obtain another there that will again look better than here.
Others are merely mirrors of you. You cannot love or hate something about another person unless it reflects to you something you love or hate about yourself.
What you make of your life is up to you. You have all the tools and resources you need. What you do with them is up to you. The choice is yours.
Your answers lie inside you. The answers to life's questions lie inside you. All you need is to look inside and trust.
Last but not least, you will forget all of this.
Wednesday we drove to Twin Falls to attend a meeting regarding what Jess qualifies for from Medicaid. When Jess turned 18 he became an adult so we had to hire a lawyer to establish guardianship so we could make decisions for him. Medicaid has a waiver program called the Developmental Disability Waiver which is suppose to help people with disablities receive financial help with therapies and care. But, just like we found out with the insurances we purchased, they have so many rules and all of that fine print to make sure you can't recover any of what you contributed to for all of those years. It was amazing to sit in this meeting! And, nobody is really sure what the rules are but they make it clear that they can't bend them. I won't go into details but again I remind you to make sure you understand the policies you buy and beware of the system set up in our government that we all pay into. Where does all of that money go I wonder? When one door closes you just have to find another one that is open. And, trust. I liked these rules so I thought I would share them with you:
TEN RULES FOR BEING HUMAN
You will receive a body. You may like it or hate it but it is yours for the entire time...this time around.
You will learn lessons. You are enrolled in a full time informal school called life. Each day in this school you will have the opportunity to learn lessons. You may like the lessons or think them irrelevant or stupid.
There are no mistakes only lessons. Growth is a process of trial and error experimentation. The 'failed' experiments are as much a part of the process as the experiment that ultimately 'works'.
A lesson is repeated until it is learnt. A lesson will be presented to you in various forms until you have learnt it. When you have learnt it you can then go on to the next lesson.
Learning lessons does not end. There is no part of life that does not contain its lessons. If you are alive there are lessons to be learnt.
'There' is no better than 'here'. When your 'there' has become 'here' you will simply obtain another there that will again look better than here.
Others are merely mirrors of you. You cannot love or hate something about another person unless it reflects to you something you love or hate about yourself.
What you make of your life is up to you. You have all the tools and resources you need. What you do with them is up to you. The choice is yours.
Your answers lie inside you. The answers to life's questions lie inside you. All you need is to look inside and trust.
Last but not least, you will forget all of this.
Wednesday, October 12, 2005
October 12th at 12:00 p.m.
How is Jess? Jess is healthy, handsome, frustrated (I am sure) but so tolerant, responsive (sometimes), moving his left hand and foot, still eating small amounts, enjoying school (I hope), horseback riding well...and, oh, so loved.
How is his family? Struggling... A good friend told me it was ok to not have all positive good days. And, it was ok to be honest about it. So many people say to me, "I can't imagine what your day is like." I can help you with that image. Have one of the people in your life that you love and cherish more than life itself lie down on the bed. Tell them they cannot move, talk, smile, laugh or cry for 24 hours. Also make sure they are 10 inches taller and 40 pounds heavier than you. You need to figure out how to take care of every aspect of this beautiful person's life. Whatever you do to sustain your own life you must do for this person you love so much. You are also responsible for making sure he has all the right therapies, rest, nutrition, medical checkups, right amount of standing, moving in different positions to prevent skin breakdown, stimulation and protect his financial security. You have to make all of his decisions and make the best choices for his welfare. And, remember he cannot tell you how he feels, if he hurts, if he's mad, if he's tired....all you can do is to read his body language. You have had no formal training in severe traumatic brain injuries and you have no one that can really give you any solid answers of the outcome. And, everyone around you would like you to give them the answers you don't have. You just get to watch and wait. Multiply that 24 hour day by approximately 485 days and you will know what my day is like.
Do I sound suicidal? I'm not. I guess I just needed to share with you my reality, my frustration and explain why I have had such a hard time writing lately. I know everything is temporary and this too shall pass. I always try to remain positive. I am still very grateful that I can be there for my son. Jess will get better. I refuse to think any different. His family just hurts so badly and feels so helpless...sometimes it is unbearable. We want to run on the beach again with Jess, climb another mountain, sing another song, dance another dance, laugh, cry, argue with him so we can hug and make up. Will we get to do those things again?...who knows. We continue to pray and listen for the answer. Cherish all of those things you do with those you love because you never know when it will all be taken away from you in a split second.
How is his family? Struggling... A good friend told me it was ok to not have all positive good days. And, it was ok to be honest about it. So many people say to me, "I can't imagine what your day is like." I can help you with that image. Have one of the people in your life that you love and cherish more than life itself lie down on the bed. Tell them they cannot move, talk, smile, laugh or cry for 24 hours. Also make sure they are 10 inches taller and 40 pounds heavier than you. You need to figure out how to take care of every aspect of this beautiful person's life. Whatever you do to sustain your own life you must do for this person you love so much. You are also responsible for making sure he has all the right therapies, rest, nutrition, medical checkups, right amount of standing, moving in different positions to prevent skin breakdown, stimulation and protect his financial security. You have to make all of his decisions and make the best choices for his welfare. And, remember he cannot tell you how he feels, if he hurts, if he's mad, if he's tired....all you can do is to read his body language. You have had no formal training in severe traumatic brain injuries and you have no one that can really give you any solid answers of the outcome. And, everyone around you would like you to give them the answers you don't have. You just get to watch and wait. Multiply that 24 hour day by approximately 485 days and you will know what my day is like.
Do I sound suicidal? I'm not. I guess I just needed to share with you my reality, my frustration and explain why I have had such a hard time writing lately. I know everything is temporary and this too shall pass. I always try to remain positive. I am still very grateful that I can be there for my son. Jess will get better. I refuse to think any different. His family just hurts so badly and feels so helpless...sometimes it is unbearable. We want to run on the beach again with Jess, climb another mountain, sing another song, dance another dance, laugh, cry, argue with him so we can hug and make up. Will we get to do those things again?...who knows. We continue to pray and listen for the answer. Cherish all of those things you do with those you love because you never know when it will all be taken away from you in a split second.
Monday, October 3, 2005
October 3rd at 9:30 p.m.
I don't have much news. It was homecoming week here last week and it was a tough one for me for some reason. Most of Jess' old friends have gone away to college and I guess it just doesn't seem right that Jess is not with them.
I do want to thank everyone that is still visiting this site. Your good thoughts and prayers will always be very appreciated. It is almost 1 year and 4 months since we started this site and I am amazed at how many people still are keeping in touch. We love you all and wish only the best for you too.
I do want to thank everyone that is still visiting this site. Your good thoughts and prayers will always be very appreciated. It is almost 1 year and 4 months since we started this site and I am amazed at how many people still are keeping in touch. We love you all and wish only the best for you too.
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