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Thursday, August 29, 2013
This is... on August 29 2013
When you don't know what to do.
Today's post is called... sometimes I don't know what to do.
And sometimes is often these days. Did you ever find yourself alone with your time, and you have multitudes of responsibilities and just shut down. Just close. Or you kind of go numb, and feel empty of ideas. Even as you stare at a desk covered with papers, forms, and lists of things to do. You can't start. Even as you walk through every room of your house and make note of the cobwebs in the corners and the piles of laundry and rugs covered by cat hair. You can't seem to find the vaccuum. Or even try searching for it.
Even as you start up your car, and the engine light comes on, and the head light is out and you have barely any gas, you decided to turn off the car. And go back into the house.
I'm not sure what happens, when that happens. I'm a very intelligent and highly educated person. Years of college and a Masters degree. I've always had my head on straight.
But I'm 47 years old. The mother of three. I've overcome many physical obstacles, and have mental demons I am still keeping under control. I try to do the best that I can. But I feel like I am not really quite sure what my role is anymore. Although I know, of course, that I am a Mother... advocate, and all of that. I just feel like the complete responsibility for home and family and disabled child sucks out my brain cells and I just stop.
Today, I was walking Henry around the back yard. We have two chairs facing into the woods out there, because sometimes John lights a bon fire in the pit. I sat in the chair. Stared at the woods. And felt, absolutely nothing. I said a prayer, because it felt like a good peaceful time to do it. So I suppose I did feel the presence of the holy spirit.
But when I came into the house my head was pounding like 50 snare drums were banging in my head. I looked at the dishes, and opened the mail (bills of course), and managed to put a load of laundry in. The puppy follows me everywhere, watching, waiting to see what I'll do next.
I don't know what I'll do next. Is there something I was supposed to do? Probably.
Perhaps its just time to embrace the fact that sometimes, there are moments where nothingness takes over. Like when a car has all of these problems, and then suddenly it just dies on you. And you roll to a stop... and its dead silent in there. And you don't know what to do. Except call for help. But your cell phone is dead. Silence.
It's only for awhile. Because I will soon be triggered back into my reality by a phone call, or someone coming home from school, or a text message, or a dog barking. Like someone throwing a cold glass of water on my head.
Life is just like that. Are we wired to go dysfunctional when we just can't handle it anymore? Like when you computer gets too hot and shuts off? Maybe.
Julie do this. Julie do that. Julie call this guy. Julie put this on your list. Julie did you call the blank, blank blank? Julie what is the status of the "blank". Mrs. Hasselberger please call me back to discuss the information for Daniels hospital appointment, Mrs. Hasselberger..this is Linda from professional home care, Mrs. Hasselberger this is Amanda from ATG rehab, Julie Daniels finger lost circulation in his hand splint, Julie Daniel has no more wipes, Julie fill out these forms, Julie Daniel hasnt been to the dentist in a year....
And. I suddenly, don't know what to do. So I decide to simply blog about it. Made the choice what to do. Write about when I don't know what to do.
And isn't life just like that sometimes. Maybe it's God's way of saying... STOP... you are putting too much pressure on yourself.
So, I look into the little face of the puppy sent to us from an angel. I've got him in my arms and his soft hair is like cotton. He is the cutest darn puppy I've ever seen. And he is waiting for me. So I am going to spend time with him. Let's go Henry. Let's go play fetch in the front yard and work on your skills.
And time keeps moving on.
And sometimes is often these days. Did you ever find yourself alone with your time, and you have multitudes of responsibilities and just shut down. Just close. Or you kind of go numb, and feel empty of ideas. Even as you stare at a desk covered with papers, forms, and lists of things to do. You can't start. Even as you walk through every room of your house and make note of the cobwebs in the corners and the piles of laundry and rugs covered by cat hair. You can't seem to find the vaccuum. Or even try searching for it.
Even as you start up your car, and the engine light comes on, and the head light is out and you have barely any gas, you decided to turn off the car. And go back into the house.
I'm not sure what happens, when that happens. I'm a very intelligent and highly educated person. Years of college and a Masters degree. I've always had my head on straight.
But I'm 47 years old. The mother of three. I've overcome many physical obstacles, and have mental demons I am still keeping under control. I try to do the best that I can. But I feel like I am not really quite sure what my role is anymore. Although I know, of course, that I am a Mother... advocate, and all of that. I just feel like the complete responsibility for home and family and disabled child sucks out my brain cells and I just stop.
Today, I was walking Henry around the back yard. We have two chairs facing into the woods out there, because sometimes John lights a bon fire in the pit. I sat in the chair. Stared at the woods. And felt, absolutely nothing. I said a prayer, because it felt like a good peaceful time to do it. So I suppose I did feel the presence of the holy spirit.
But when I came into the house my head was pounding like 50 snare drums were banging in my head. I looked at the dishes, and opened the mail (bills of course), and managed to put a load of laundry in. The puppy follows me everywhere, watching, waiting to see what I'll do next.
I don't know what I'll do next. Is there something I was supposed to do? Probably.
Perhaps its just time to embrace the fact that sometimes, there are moments where nothingness takes over. Like when a car has all of these problems, and then suddenly it just dies on you. And you roll to a stop... and its dead silent in there. And you don't know what to do. Except call for help. But your cell phone is dead. Silence.
It's only for awhile. Because I will soon be triggered back into my reality by a phone call, or someone coming home from school, or a text message, or a dog barking. Like someone throwing a cold glass of water on my head.
Life is just like that. Are we wired to go dysfunctional when we just can't handle it anymore? Like when you computer gets too hot and shuts off? Maybe.
Julie do this. Julie do that. Julie call this guy. Julie put this on your list. Julie did you call the blank, blank blank? Julie what is the status of the "blank". Mrs. Hasselberger please call me back to discuss the information for Daniels hospital appointment, Mrs. Hasselberger..this is Linda from professional home care, Mrs. Hasselberger this is Amanda from ATG rehab, Julie Daniels finger lost circulation in his hand splint, Julie Daniel has no more wipes, Julie fill out these forms, Julie Daniel hasnt been to the dentist in a year....
And. I suddenly, don't know what to do. So I decide to simply blog about it. Made the choice what to do. Write about when I don't know what to do.
And isn't life just like that sometimes. Maybe it's God's way of saying... STOP... you are putting too much pressure on yourself.
So, I look into the little face of the puppy sent to us from an angel. I've got him in my arms and his soft hair is like cotton. He is the cutest darn puppy I've ever seen. And he is waiting for me. So I am going to spend time with him. Let's go Henry. Let's go play fetch in the front yard and work on your skills.
And time keeps moving on.
Tuesday, August 20, 2013
Sister leaves, Football struggles for Thomas and Henry howls and makes us laugh
There is a warmth today that is uncomfortable. I washed Daniel's van and it became quite clear that I chose a project I wasnt going to enjoy today.
Daniel is, after all of my bragging about his healthy state, suffering from gunky congestion today. It just goes to show you, that when you least expect it, expect it. And we are managing that as we always must do. Daniel finished up his STARR summer school program, and is basically hanging out until the rest of August melts away and school starts again on the 27th. He had physical therapy today, and his hamstrings are terribly tight. I need to do more.
Sarah is just about finishing her packing for her move to college on Thursday. I am pretty sad, as most Mom's are, but she is the sunshine and the fire in this house. Her vibrant personality shakes the walls and fills the halls. I just don't know how it will be without her. Thomas will be busy, but I know it will be strange for him to no longer have her to talk to. Daniel, of course, is unable to speak and communicate with us on an advanced level. She's heading to Wagner College to study Arts Administration and she'll be very close to New York City.
FOOTBALL 2013....
Football started up the first week of August. Thomas has been struggling with some emotional issues, and I worried that he wouldn't do well. He got into conditioning week and just felt like he had no passion for anything anymore. I reached out to the coach and to his trainer at the NYA to see what I could do to help him, what did they suggest? But sometimes questions are not responded to. People are busy. I'm the one worried about this Thomas. This Thomas who is brilliant. Who, we discovered has perfect pitch. Who, taught himself to play a Tenor Trombone with an f attachment in a few short weeks. Now we are paying off a Baritone Sax and a Trombone. This Thomas who played and did an improv solo in a jazz band consisting of adults and highschoolers.
But Football... he likes the game. He just feels like he doesn't understand how he can "EARN IT" if he never gets the chance to apply skills, and take instruction. I just look at him....yes he is a bigger guy, and yes he needs to be faster, and to move his feet. But about that, he is sharp as a tack, smart, and eager to please. Last night at practice he hung off to the back of the pack, he looked down...and I was worried about the things that are red flagged in therapy. Well, anyhow on the football thing, he is not fast... and even though everyone tells him he has potential, he seems to spend so much time just standing on the side or kneeling. I don't claim to know that much about the sport.... but I do wish the kids who are in need of "earning it" time, got more time to try. Maybe if John had been more patient and more involved, and got in there like the other Dad's Thomas would try harder. Instead he has me... THAT lady, with the wheelchair and the little black dog. Urging him on, in her mind, as he struggles through the running.
The other parents tell me encouraging things, but I have a boy who comes home feeling like "crap". I don't know what to do. Except stay positive.
Boy do I love the sound of that saxophone when he just picks it up and that amazing bass sound just comes soothingly out of the horn.
I am doing something to help both Thomas and I now that Sarah will be in school and I have one less child to concentrate on... We are going to see a nutritionist and get on a healthy eating and exercise plan. Both Thomas and I are overweight, and I know that it will be better for both of us.
So already the summer of 2013 is winding down. The Sandy Hook School kids are spending another year in Monroe. Thomas is going into the 7th grade and that means the Middle School. Moving along.
Daniel... Daniel just stays in his program at Reed School. He isn't progressing along grade to grade...because he doesn't have a grade. He just has "Daniel's speed". The same bus, the same room...and all around him... new 5th and 6th graders. I don't know how I really feel about that. Is it the best thing for him since he is now almost 16? But what other options would I have for him. I don't know. I need to know. 
And finally, there is little Henry. Henry, who at this moment is 11 weeks old and 5 pounds. Our little dog, who came to be with us in July... who is in full blown puppy stage. Henry is awesome. I'm trying to figure out what the training is going to look like for him. I suppose I had thought it was going to be somehow more organized, and yet I am confused as heck. I am reading the books, and following instruction but he will be going to a puppy behavior class in September. I know he'll make a great little service dog someday for Daniel, but we have a long long way to go. I have NO IDEA how to train him to respond to a seizure, or stay by Daniel's chair. It's all a new and exciting adventure.
It's almost time to prepare for football again. Thomas told us last night that he would push harder and try harder. I just wish someone out there was in his corner. All of those coaches are busy guys, getting the best kids into the best spots and preparing for games. It's all about winning. I understand that. And for the parents who have those high speed athletic boys out there, always starting, superstars in multiple sports... they have fun watching their boys play. But the parents like me, who have a boy with a heart of gold, who never gives up, but feels disheartened, who watches quietly while his buddies out run him and go out to make plays. He runs slow, but the doctor said the pain he feels is related to the diaphram... not the lungs, Asthma is better... We had one said therapy session where he burst into tears and said he is tired of being "the big slow kid". So back then I began to encourage him back to better nutrition.
Well... a Mother's love for her son is very different than a father's expectations. I have a son who will NEVER walk, talk, or play any sport, or walk in a parade, or go to college, or run a suicide or a sprint. The degree to which I have to manage this, trumps out alot of things that I know I should be pushing. Such as the athleticism of my son.
And sometimes, I think about how my own heart gets sad and lonely and I know my boy is like me. Surrounded by people who like you, but feeling lonely because you are so profoundly different.
I had always hoped that when Thomas went to the football field, someone would have talked with him, encouraged him, gave him an extra push, and extra shoulder. Because he's had a hard life. He's seen so much adversity and pain. And he is only 12. And he lives in it every day. But like Daniel, I am apparently also the only one looking out for Thomas's happiness. But I don't want to get involved with the sports, because I feel silly.
The music, on the other hand, I will do whatever it takes to keep that music flowing. He is gifted, and in love with music. Afterall, we all need a way to express our soul. Even a 12 year old boy.
Daniel's little dog is asking me to get him outside to potty. We will find a shady tree.
Monday, August 5, 2013
Crappy Birthday to me, But here comes Henry!!!
August 5, 2013
Funny how quickly summer escapes us. From June to now has been a whirlwind of events. Florida, Sarah's amazing performance as Fiona in Shrek, and graduation parties coming up this week.
But the best part of all has been Daniel's solid health. He has not had a problem in so long. I loved seeing how happy he was down in Florida. Here, it's not as much fun because we don't have a pool, but we do the best that we can.
And from a heart felt post about how a dog could improved Daniel's life, came a chain of wonderful events that landed a small puppy into my loving arms. He is a Coton De Tulear puppy, and he will be trained over the next however long, to be a service dog and Daniel's companion. But he is a social little guy, and is taking the world by storm.
I'm busy, and very tired but the pup is filling an emotional void that I have. Well, my birthday came and went too. I've always been a big birthday person, but this year it was a disaster. Worse than Mother's day. On my birthday Sarah had her Shrek performances, so that part was wonderful. But the next day was supposed to be our celebration day. John got angry over a football helmet, just as we were leaving to go out, and he left the car. He went into the house. And didn't speak for a day or two. My birthday never happened. I felt heartbroken, and hurt by the man who is supposed to be my partner and friend. I don't understand why I even expect happiness anymore around here. He never even showed that he cared or it bothered him. So even when I feel sad, I look at Daniel and Sarah and Thomas and my animals and they all love me so much... They are my source of strength. They and God.
So Daniel is finishing up his last week of summer program. I have so much to do for him, from a broken foot lift on his bed, to a muffler falling off of the Big Van. And switching his GI care to Yale, and finding out what the next steps are to increasing his weight bearing and movement. He needs more of my attention. Way more. He doesn't like it when I leave him with a nurse all weekend... and neither do I. Something has to give alittle.
But we are getting ready to help Sarah go to Wagner College and start her new life there. I know the boys will miss her and I know it will affect Daniel. How could it not? She is a vibrant, loud, lively, dynamic part of this house. I will miss her.
So that's the latest buzz. Tonight is the first night of Football practice for Thomas and the weather is spectacular!! And of course Henry will be there!!
In my heart of hearts I feel like the world is just throwing wrenches at me left and right but I am tough enough. I have a lonely heart lately though, and that is the heart that is all Julie. Not Julie as mother. Julie as caregiver. But Julie as woman. And its something I have to work on.
OK. What was I saying, Football?? Yes. Football. And so it begins again. Life is good.
Funny how quickly summer escapes us. From June to now has been a whirlwind of events. Florida, Sarah's amazing performance as Fiona in Shrek, and graduation parties coming up this week.
But the best part of all has been Daniel's solid health. He has not had a problem in so long. I loved seeing how happy he was down in Florida. Here, it's not as much fun because we don't have a pool, but we do the best that we can.
And from a heart felt post about how a dog could improved Daniel's life, came a chain of wonderful events that landed a small puppy into my loving arms. He is a Coton De Tulear puppy, and he will be trained over the next however long, to be a service dog and Daniel's companion. But he is a social little guy, and is taking the world by storm.
I'm busy, and very tired but the pup is filling an emotional void that I have. Well, my birthday came and went too. I've always been a big birthday person, but this year it was a disaster. Worse than Mother's day. On my birthday Sarah had her Shrek performances, so that part was wonderful. But the next day was supposed to be our celebration day. John got angry over a football helmet, just as we were leaving to go out, and he left the car. He went into the house. And didn't speak for a day or two. My birthday never happened. I felt heartbroken, and hurt by the man who is supposed to be my partner and friend. I don't understand why I even expect happiness anymore around here. He never even showed that he cared or it bothered him. So even when I feel sad, I look at Daniel and Sarah and Thomas and my animals and they all love me so much... They are my source of strength. They and God.
So Daniel is finishing up his last week of summer program. I have so much to do for him, from a broken foot lift on his bed, to a muffler falling off of the Big Van. And switching his GI care to Yale, and finding out what the next steps are to increasing his weight bearing and movement. He needs more of my attention. Way more. He doesn't like it when I leave him with a nurse all weekend... and neither do I. Something has to give alittle.
But we are getting ready to help Sarah go to Wagner College and start her new life there. I know the boys will miss her and I know it will affect Daniel. How could it not? She is a vibrant, loud, lively, dynamic part of this house. I will miss her.
So that's the latest buzz. Tonight is the first night of Football practice for Thomas and the weather is spectacular!! And of course Henry will be there!!
In my heart of hearts I feel like the world is just throwing wrenches at me left and right but I am tough enough. I have a lonely heart lately though, and that is the heart that is all Julie. Not Julie as mother. Julie as caregiver. But Julie as woman. And its something I have to work on.
OK. What was I saying, Football?? Yes. Football. And so it begins again. Life is good.
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