The blog that inspired me to jump on the blogging bandwagon (later than most) is written by Lesley. Here is her latest post.
I have similar feelings, fears and longings rolling about in my mind. I want a simple, happy, peaceful life. For Daniel. For myself and the people closest to us who love us and keep us going. Like Lesley, I don't dream about vacations or having a hot body with a wardrobe fit to kill. It's not that I'm "above" those things, whatever that means. It's just that I have this teenage boy in my life who shifts my perspective and helps me clarify what I really, really want as our experience.
Lesley says this, "I sense that this was all written on her pretty little soul the very first day she came into this world. And my challenge will be to handle it. To deal with it, to make sense of it and to support her in every possible way. Am I am fearful? Yes. It makes me anxious, yes. But mostly it makes me sad. And more determined than ever to make every day a good day for Sarah, as best as it can be. I live in the moment, because her future isn't looking too hot."
She writes that Sarah is losing some of her skills, and without a diagnosis, Lesley isn't sure what the future holds in terms of prognosis.
Because of Daniel I have so many people in my life who deal with uncertainty, with more unknowns than most parents. True, none of us knows what twists and turns our lives will take. Not many people plan on cancer or life altering accidents. But this ride is different. If you aren't on it, I can't really fully explain the experience. It's something you have to live.
I do know that having a community of friends who "get it" makes all the difference. I thank you all. I'm ready to do it again in this New Year, this circa 2012. Here's to it!
Monday, January 2, 2012
Sunday, January 1, 2012
The River of Stones
Saturday, December 31, 2011
Friday, December 30, 2011
Is it 2012 yet?
I just finished a long walk with Daniel around the neighborhood. I tried to breathe a little more deeply and let some of the chaos of the past couple of weeks go. It's been good, not so good, and at times a bit ugly.
First of all, thank God my parents have been here since Thanksgiving. I don't know how we'd have survived without them. We'd definitely be less well fed and the house would not be as organized. I love those two with my whole heart and every cell of my being! Not that I'm dramatic or anything!
Both of my kids had birthdays in the past week. Those were good days. Celebratory. Fun. I now have both a 16 and 13 year old living under my roof, and I'm about to hit 50. Let the good times roll!
On Christmas day we went over to pick up Rich's mom who lives alone since her husband of 64 years died this past August. She didn't answer the door, and the newspaper from the day before was still outside. Not good.
I yelled through the mail slot and heard her weakly say, "I'm coming," just as we got the stubborn key to turn in the lock. She was on the floor in her pajamas, and had been there for awhile.
Long story short, she was hurt, but not badly. We ended up calling rescue and having her admitted to the hospital where we found out she has a few issues that need immediate attention. Her rotator cuff is torn, and she's a little more confused than usual.
After a few days as an inpatient, she was transferred to a skilled nursing facility for physical rehab and nursing care. The main point that I must relate about all of this is that she is one tough, kind, positive lady. She's thankful, polite to all, and she does not complain. I could learn a lot from her. When I think of how well she's handled all of this, it really tears me up. I love that woman.
So, you can perhaps imagine that life has kicked it up a few notches lately. Daniel is great, he got over a cold in two days time and only a few nebulizer treatments. Melody took a little longer to get over hers, and I stayed healthy through it all. My mom and dad are strong like bulls, even though they have a lot of pain to deal with at almost 77 years of age.
We have a few more nights together, then we'll all be back to our old routines. For now, I'm focusing on ringing in 2012 with as much chutzpah as I can muster.
Here's to all of you out there struggling, yet having fun and making this crazy life work one way or another! If I don't post again until then, Happy New Year!
First of all, thank God my parents have been here since Thanksgiving. I don't know how we'd have survived without them. We'd definitely be less well fed and the house would not be as organized. I love those two with my whole heart and every cell of my being! Not that I'm dramatic or anything!
Both of my kids had birthdays in the past week. Those were good days. Celebratory. Fun. I now have both a 16 and 13 year old living under my roof, and I'm about to hit 50. Let the good times roll!
On Christmas day we went over to pick up Rich's mom who lives alone since her husband of 64 years died this past August. She didn't answer the door, and the newspaper from the day before was still outside. Not good.
I yelled through the mail slot and heard her weakly say, "I'm coming," just as we got the stubborn key to turn in the lock. She was on the floor in her pajamas, and had been there for awhile.
Long story short, she was hurt, but not badly. We ended up calling rescue and having her admitted to the hospital where we found out she has a few issues that need immediate attention. Her rotator cuff is torn, and she's a little more confused than usual.
After a few days as an inpatient, she was transferred to a skilled nursing facility for physical rehab and nursing care. The main point that I must relate about all of this is that she is one tough, kind, positive lady. She's thankful, polite to all, and she does not complain. I could learn a lot from her. When I think of how well she's handled all of this, it really tears me up. I love that woman.
So, you can perhaps imagine that life has kicked it up a few notches lately. Daniel is great, he got over a cold in two days time and only a few nebulizer treatments. Melody took a little longer to get over hers, and I stayed healthy through it all. My mom and dad are strong like bulls, even though they have a lot of pain to deal with at almost 77 years of age.
We have a few more nights together, then we'll all be back to our old routines. For now, I'm focusing on ringing in 2012 with as much chutzpah as I can muster.
Here's to all of you out there struggling, yet having fun and making this crazy life work one way or another! If I don't post again until then, Happy New Year!
Tuesday, December 27, 2011
Sixteen!
My daughter turned 16 today. If I could choose to help her learn just one thing, the above would be a pretty good choice. Truth be told, she teaches me more than I'll ever teach her. She has been one of Daniel's constant companions and best friends. Love, love, love that girl. We took a day trip with my mom to Cassadaga, Florida.
My mom and my daughter.
I am quite possibly at my nerdiest in this picture. It's one of few taken with my daughter today, so I'll bury my ego and include it here!
Friday, December 23, 2011
Thirteen!
Daniel unwrapped the new iPad today, and his big sister helped with selecting the first few apps to get him started. Cool coloring app, and one specifically for autism that involves cause and effect. These were taken at the end of a long, very fun day spent in St. Augustine. He was tired, but attentive.
He (and I) are very lucky to have her to help us with the technical stuff. Here's to big sisters, Mission: iPossible and Daniel's thirteenth birthday!
He (and I) are very lucky to have her to help us with the technical stuff. Here's to big sisters, Mission: iPossible and Daniel's thirteenth birthday!
Sunday, December 18, 2011
What keeps you going?
What is it that keeps you going as you care for your child full-time? Part of my inner pep talk comes from a book I read when Daniel was a baby, Changed by a Child, by Barbara Gill. When I'm really tiring out and starting to wonder how I can keep up, I think of her words.
She writes, "The physical acts we perform for our children easily become tiresome chores. Our son is seven and we still have to dress him; at fourteen we are helping with the shampoo, the bath, putting the special lotion on the very dry skin. He is well beyond age one and we are still feeding him and will be for years to come..."
"There are days when we think we cannot do another feeding or give one more bath. And then there are those moments when we give ourselves completely in response to our child's need...We know the intimacy of placing food in another person's mouth...We are not just putting on a shirt; we are consciously touching another person with love. When we surrender ourselves to these acts of physical caring, we experience love; we are healed and made strong."
When I hear him calling me on a Saturday morning and I'd really rather lie in bed awhile longer, that passage often comes to mind. Surrender. When I give up my ideas of how things "should" be, or might have been, or how much better or easier someone else has it, I can get into the zone. He needs me. He needs me every single day in very basic, life sustaining ways. I don't want to glorify his disability. Yet I also want to shine light on how beautiful our relationship is. It's a balance I'm aiming for.
I could easily let my thoughts overwhelm me if I dwell too long on just how dependent Daniel is on me. I am responsible for all of his physical routines such as eating and bathing as well as moving and lifting him. I support him financially. My job pays the bills, and the little I get from other sources wouldn't even cover a months worth of diapers and food.
It's not good to be without a back-up, but that's where I am right now. I have a little bit of state help in the form of a personal caregiver who enables me to get out the door in the morning for work before his school bus comes. If he's sick, I'm the one who has to stay home and miss work. The buck stops here every single time. That's ok, and yet it's not. I know I have to build a network and have supports in place. That's a topic for another post, though, and one I've touched on before.
Today I'm just grateful that I read that book when he was so small. It really affected the way I frame the experience Daniel and I are living. Is it stretching things to say that it's a privilege to be so enmeshed in caring for him? I don't think so.
So, back to my original question. It's one I really want answers to. What is it that keeps you going?
She writes, "The physical acts we perform for our children easily become tiresome chores. Our son is seven and we still have to dress him; at fourteen we are helping with the shampoo, the bath, putting the special lotion on the very dry skin. He is well beyond age one and we are still feeding him and will be for years to come..."
"There are days when we think we cannot do another feeding or give one more bath. And then there are those moments when we give ourselves completely in response to our child's need...We know the intimacy of placing food in another person's mouth...We are not just putting on a shirt; we are consciously touching another person with love. When we surrender ourselves to these acts of physical caring, we experience love; we are healed and made strong."
When I hear him calling me on a Saturday morning and I'd really rather lie in bed awhile longer, that passage often comes to mind. Surrender. When I give up my ideas of how things "should" be, or might have been, or how much better or easier someone else has it, I can get into the zone. He needs me. He needs me every single day in very basic, life sustaining ways. I don't want to glorify his disability. Yet I also want to shine light on how beautiful our relationship is. It's a balance I'm aiming for.
I could easily let my thoughts overwhelm me if I dwell too long on just how dependent Daniel is on me. I am responsible for all of his physical routines such as eating and bathing as well as moving and lifting him. I support him financially. My job pays the bills, and the little I get from other sources wouldn't even cover a months worth of diapers and food.
It's not good to be without a back-up, but that's where I am right now. I have a little bit of state help in the form of a personal caregiver who enables me to get out the door in the morning for work before his school bus comes. If he's sick, I'm the one who has to stay home and miss work. The buck stops here every single time. That's ok, and yet it's not. I know I have to build a network and have supports in place. That's a topic for another post, though, and one I've touched on before.
Today I'm just grateful that I read that book when he was so small. It really affected the way I frame the experience Daniel and I are living. Is it stretching things to say that it's a privilege to be so enmeshed in caring for him? I don't think so.
So, back to my original question. It's one I really want answers to. What is it that keeps you going?
Friday, December 16, 2011
Thank you, Mission: iPossible!
When I started this blog my first entry was about communication. We were beginning to try a new picture system in school last spring, and I posted some photos of Daniel attempting to use it.
The picture book turned out to be too complicated and cumbersome. Even I, with somewhat normal dexterity, had trouble finding the page and picture I was looking for. We bagged it.
Then we started private speech and language therapy. Daniel's therapist suggested an iPad. Hmmmm. The cost of one is pretty steep. I told Dan's dad to save any Christmas or birthday money he receives for him (Daniel will be thirteen on the 23rd) and that I would do the same. I figured we might be able to pool enough to buy him one for his birthday/Christmas present.
Then I stumbled upon a blog that was giving away iPads. It's over here: Mission: iPossible
I entered. There was a two week wait, after which a random generator picked two winners.
And...you guessed it! Daniel won! I'm very excited about the potential that the communication apps have for him. It's also really good to end the year on a positive note like this.
Thanks, Ken, Heather and Mission: iPossible! Stay tuned for stories and pictures of Mr. D and his new state of the art communication tool!
The picture book turned out to be too complicated and cumbersome. Even I, with somewhat normal dexterity, had trouble finding the page and picture I was looking for. We bagged it.
Then we started private speech and language therapy. Daniel's therapist suggested an iPad. Hmmmm. The cost of one is pretty steep. I told Dan's dad to save any Christmas or birthday money he receives for him (Daniel will be thirteen on the 23rd) and that I would do the same. I figured we might be able to pool enough to buy him one for his birthday/Christmas present.
Then I stumbled upon a blog that was giving away iPads. It's over here: Mission: iPossible
I entered. There was a two week wait, after which a random generator picked two winners.
And...you guessed it! Daniel won! I'm very excited about the potential that the communication apps have for him. It's also really good to end the year on a positive note like this.
Thanks, Ken, Heather and Mission: iPossible! Stay tuned for stories and pictures of Mr. D and his new state of the art communication tool!
Tuesday, December 13, 2011
Road Trip
We loaded up the van and went to Gainseville yesterday. Destination: The University of Florida and one of the country’s experts on Angelman Syndrome.
The trip started in the pouring rain. As I lifted Daniel into his grandpa’s van, I caught a whiff of something. Then it was back into the wheelchair, and back inside for what would prove to be a fortunate bathroom break.
Thirty minutes into the trip, I realized I left his bag with his Pediasure, diapers, wipes, cups and bandanas sitting in the garage. Oops. Do we turn around? Do we wing it? We chose to keep going.
Daniel is a fussy eater. He prefers Pediasure from a straw, but eats lunch at school everyday. I’m always amazed that they check “ate 100% of meal”. But apparently he does. So, when we pulled into KFC I had strong words for my boy.
“You MUST eat now, because I didn’t bring any Pediasure, and your stomach will hurt if you don’t eat something. It’s just like a regular school day. You HAVE to eat. No water until you eat, either.” That last part didn’t thrill him at all, and he reached and reached for the water cup. Drinking is one of his favorite activities.
Mean mama prevailed (I guess I'm not quite as ineffective as I think). He ate his lunch, drank a little water, and we were off again.
Parking was fun. We went to the wrong garage and the wrong building. When we realized it, we had to move fast (in the rain) through three parking areas and into the right clinic. This involved my 76 year old father helping me lift the wheelchair with Daniel in it up four stairs (not four flights, mind you, just four stairs. Still.) We made it to the check-in desk five minutes ahead of time.
Dr. Williams came in wearing a mask since he’s battling a cold. I thanked him for not sharing his germs with us, and he proceeded to go through the list of tests that Daniel’s had done in his almost 13 years on earth (this was after we saw the nurse, followed by the nurse practitioner).
The doc left the room to confer with his NP, then came back with his pronouncements. “This is not Angelman Syndrome. He doesn’t have the Angelman gestalt. His main characteristics seem to be severe growth retardation and autistic behaviors. It's definitely genetic. Have you had the microarray analysis done? No? I’ll write a script for one and it may show some chromosomal deletions or duplications.” He talked some more genetics talk, and then we headed to the lab.
We found some milk for him to sip while we waited. The technician looked for a vein and tightened the tourniquet on his arm. Daniel suddenly grinned big. Is he enjoying this whole debacle more than me? Then he passed gas. Loudly. Forcefully. I guess that’s what he thought of the whole business.
The trip started in the pouring rain. As I lifted Daniel into his grandpa’s van, I caught a whiff of something. Then it was back into the wheelchair, and back inside for what would prove to be a fortunate bathroom break.
Thirty minutes into the trip, I realized I left his bag with his Pediasure, diapers, wipes, cups and bandanas sitting in the garage. Oops. Do we turn around? Do we wing it? We chose to keep going.
Daniel is a fussy eater. He prefers Pediasure from a straw, but eats lunch at school everyday. I’m always amazed that they check “ate 100% of meal”. But apparently he does. So, when we pulled into KFC I had strong words for my boy.
“You MUST eat now, because I didn’t bring any Pediasure, and your stomach will hurt if you don’t eat something. It’s just like a regular school day. You HAVE to eat. No water until you eat, either.” That last part didn’t thrill him at all, and he reached and reached for the water cup. Drinking is one of his favorite activities.
Mean mama prevailed (I guess I'm not quite as ineffective as I think). He ate his lunch, drank a little water, and we were off again.
Parking was fun. We went to the wrong garage and the wrong building. When we realized it, we had to move fast (in the rain) through three parking areas and into the right clinic. This involved my 76 year old father helping me lift the wheelchair with Daniel in it up four stairs (not four flights, mind you, just four stairs. Still.) We made it to the check-in desk five minutes ahead of time.
Dr. Williams came in wearing a mask since he’s battling a cold. I thanked him for not sharing his germs with us, and he proceeded to go through the list of tests that Daniel’s had done in his almost 13 years on earth (this was after we saw the nurse, followed by the nurse practitioner).
The doc left the room to confer with his NP, then came back with his pronouncements. “This is not Angelman Syndrome. He doesn’t have the Angelman gestalt. His main characteristics seem to be severe growth retardation and autistic behaviors. It's definitely genetic. Have you had the microarray analysis done? No? I’ll write a script for one and it may show some chromosomal deletions or duplications.” He talked some more genetics talk, and then we headed to the lab.
We found some milk for him to sip while we waited. The technician looked for a vein and tightened the tourniquet on his arm. Daniel suddenly grinned big. Is he enjoying this whole debacle more than me? Then he passed gas. Loudly. Forcefully. I guess that’s what he thought of the whole business.
Tuesday, December 6, 2011
Communal Living
I've been researching the idea of disability communes, aka intentional communities, since a couple of posts ago. I sort of like the idea at noahsarkflorida.org (links aren't working right now, sorry), but it's designed for families whose kids have mild to moderate developmental disabilities. I would love to see something for those of us whose kids are in the severe range.
I'm wondering who else out there would be interested in a living arrangement that includes entire families who have a severely disabled minor or adult child. I'm envisioning something like a large area of land, maybe several acres, with separate cottages and possibly a common area for meals.
Does this ring anyone's bell, or do I need to get my head outa the clouds?
I'm wondering who else out there would be interested in a living arrangement that includes entire families who have a severely disabled minor or adult child. I'm envisioning something like a large area of land, maybe several acres, with separate cottages and possibly a common area for meals.
Does this ring anyone's bell, or do I need to get my head outa the clouds?
Tuesday, November 29, 2011
Bombshell
Yesterday my mom took some pictures of Daniel sitting with me in the front yard. It's been awhile since the two of us have had a good one taken, so she snapped a stream of them. Not. One. Smile.
As you can see, it was pretty much a bust.
Later that evening, I took him to speech therapy. He has always had a penchant for pretty blondes. Even when he was a very small boy, he would blush and grin whenever he'd get close to certain people of the female persuasion. His SLP is a young, very attractive woman with long, blonde hair.
So, when she came into the room and talked sweetly to him, his face lit up. Suddenly, he couldn't stop smiling (forgive the mess his hair is, we had just come in from the rain).
In many ways, he's just a typical guy!
As you can see, it was pretty much a bust.
Later that evening, I took him to speech therapy. He has always had a penchant for pretty blondes. Even when he was a very small boy, he would blush and grin whenever he'd get close to certain people of the female persuasion. His SLP is a young, very attractive woman with long, blonde hair.
So, when she came into the room and talked sweetly to him, his face lit up. Suddenly, he couldn't stop smiling (forgive the mess his hair is, we had just come in from the rain).
In many ways, he's just a typical guy!
Sunday, November 27, 2011
Life on Life's Terms
Thanksgiving week was eventful. My parents pulled into town last Sunday, and we laughed and sang the night away (dad's hooked on internet Karaoke, which I am becoming quite attached to myself).
The next day after work I came home to find that Rich's temperature climbed to almost 104. We rushed to the ER and five hours later came home with a diagnosis of early pneumonia and a prescription for heavy hitting antibiotics which we ended up paying a hefty price for since he's in the "donut hole" with his medicare coverage right now. Finally, six days later he's regaining strength.
Thanksgiving dinner was good. Not great, because my man wasn't able to partake of any food at all. His throat (original cancer site) is very sore and I'm worried. Just last week he was eating roast beef and mashed potatoes! Now we're back to square one nutrition wise. I'm hoping it's just a set-back related to the pneumonia and coughing.
Daniel and Melody are happy. Whenever grandma and grandpa are here life is as it should be. We all enjoy each other so much, and it makes the dark stuff seem a little lighter. My mom helped her pick out a gorgeous red dress for her upcoming piano recital, while I stayed home and rested. The weather is mild, and Daniel is spending lots of time going on walks and soaking up the sunshine.
I usually put the Christmas tree up the day after Thanksgiving, but I'm waiting this year. I'm too tired and just not up to speed with my usual holiday happiness level. I'll get there, I know (pray) I will. Just not yet.
The next day after work I came home to find that Rich's temperature climbed to almost 104. We rushed to the ER and five hours later came home with a diagnosis of early pneumonia and a prescription for heavy hitting antibiotics which we ended up paying a hefty price for since he's in the "donut hole" with his medicare coverage right now. Finally, six days later he's regaining strength.
Thanksgiving dinner was good. Not great, because my man wasn't able to partake of any food at all. His throat (original cancer site) is very sore and I'm worried. Just last week he was eating roast beef and mashed potatoes! Now we're back to square one nutrition wise. I'm hoping it's just a set-back related to the pneumonia and coughing.
Daniel and Melody are happy. Whenever grandma and grandpa are here life is as it should be. We all enjoy each other so much, and it makes the dark stuff seem a little lighter. My mom helped her pick out a gorgeous red dress for her upcoming piano recital, while I stayed home and rested. The weather is mild, and Daniel is spending lots of time going on walks and soaking up the sunshine.
I usually put the Christmas tree up the day after Thanksgiving, but I'm waiting this year. I'm too tired and just not up to speed with my usual holiday happiness level. I'll get there, I know (pray) I will. Just not yet.
Saturday, October 29, 2011
Make me a commune
I love that show on TLC, Sister Wives. It's about a modern day traditional Mormon family where there's one husband and four wives. I guess they're not actually Mormons anymore, since their church doesn't recognize polygamy, but they're part of a church that considers itself Mormon....or something. I don't know or care about all of the theological disagreements. But I digress.
I love it because of the community. I feel so overwhelmed by my to-do lists sometimes that I think a few extra "sister wives" would rock. Although, a few brother husbands might be nice for the heavy lifting. The women on the show are pretty good at that sort of thing too, though, so either way I'd be good.
My daughter hates the show and thinks it's strange that I like the whole idea. Yesterday she told me that she's figured out why I am attracted to the concept. It's my fascination with the nun/community lifestyle. I've often talked about how I could easily see myself as a Sister (and I wasn't raised Catholic. I'm a free spirit when it comes to religion, so the authority thing would definitely be a problem for me. It's all about the connections with other women).
Some of my best friends who also have kids with disabilities have talked in the past about a commune type of living arrangement where we all help each other out. I could so go for that. I feel isolated so much of the time. I really long for some additional companionship and help. It doesn't bode well for me that I'm also an introvert who sucks at maintaining friendships that require me to venture out of the house. I'm in a catch-22.
Seriously, though, I am feeling extra introspective lately about the future. Myself and my kids have "big ones" coming up in the way of birthdays. I'll be 50 in a few months, Daniel 13 and Melody 16 in December. I am starting to find it hard to sustain the energy for everything that needs to be accomplished in a day. Full-time work, nursing Rich back to health, therapies for Daniel, piano for Melody, shopping, laundry, cleaning....
I don't have an answer right now. Just vague images and longing for a large house split into apartments like the original home the TLC family had (they had to leave Utah when their show put them in the limelight and the authorities started making threats. Now they're in Vegas living in separate houses).
Since there's a fat chance of that ever materializing, if you have other suggestions, I'm all ears. And I'm serious. Mostly.
I love it because of the community. I feel so overwhelmed by my to-do lists sometimes that I think a few extra "sister wives" would rock. Although, a few brother husbands might be nice for the heavy lifting. The women on the show are pretty good at that sort of thing too, though, so either way I'd be good.
My daughter hates the show and thinks it's strange that I like the whole idea. Yesterday she told me that she's figured out why I am attracted to the concept. It's my fascination with the nun/community lifestyle. I've often talked about how I could easily see myself as a Sister (and I wasn't raised Catholic. I'm a free spirit when it comes to religion, so the authority thing would definitely be a problem for me. It's all about the connections with other women).
Some of my best friends who also have kids with disabilities have talked in the past about a commune type of living arrangement where we all help each other out. I could so go for that. I feel isolated so much of the time. I really long for some additional companionship and help. It doesn't bode well for me that I'm also an introvert who sucks at maintaining friendships that require me to venture out of the house. I'm in a catch-22.
Seriously, though, I am feeling extra introspective lately about the future. Myself and my kids have "big ones" coming up in the way of birthdays. I'll be 50 in a few months, Daniel 13 and Melody 16 in December. I am starting to find it hard to sustain the energy for everything that needs to be accomplished in a day. Full-time work, nursing Rich back to health, therapies for Daniel, piano for Melody, shopping, laundry, cleaning....
I don't have an answer right now. Just vague images and longing for a large house split into apartments like the original home the TLC family had (they had to leave Utah when their show put them in the limelight and the authorities started making threats. Now they're in Vegas living in separate houses).
Since there's a fat chance of that ever materializing, if you have other suggestions, I'm all ears. And I'm serious. Mostly.
Sunday, October 23, 2011
My Solace
I firmly believe that nature brings solace in all troubles. ~ Anne Frank
I agree. Today was a beautiful, sunny, invigorating fall day. I spent it with Melody and Daniel at the zoo.
After months of chemo, radiation, CT scans and surgeries, Rich got good news last week. He still has to have a PET scan in December, but for now it looks like the treatment is doing it's job. The cancer in his throat is gone, and the lymph nodes in his neck that were affected are shrinking (and will continue to do so according to the oncologist). I am thankful.
So today I took some of that "take care of yourself" advice that I've ignored since July, and spent it with two of my favorite people on earth. My kids. Rich still isn't strong enough for a big outing like this, and truthfully, he'd rather watch football. So, as we have for so many years thus far, the three of us ventured out and had a really beautiful day together.
Time for me to hit the pillow now. I should sleep well tonight!
I agree. Today was a beautiful, sunny, invigorating fall day. I spent it with Melody and Daniel at the zoo.
After months of chemo, radiation, CT scans and surgeries, Rich got good news last week. He still has to have a PET scan in December, but for now it looks like the treatment is doing it's job. The cancer in his throat is gone, and the lymph nodes in his neck that were affected are shrinking (and will continue to do so according to the oncologist). I am thankful.
So today I took some of that "take care of yourself" advice that I've ignored since July, and spent it with two of my favorite people on earth. My kids. Rich still isn't strong enough for a big outing like this, and truthfully, he'd rather watch football. So, as we have for so many years thus far, the three of us ventured out and had a really beautiful day together.
Time for me to hit the pillow now. I should sleep well tonight!
Wednesday, October 5, 2011
Friends
Over ten years ago I read a book that opened my eyes to something I hadn't thought about when considering Daniel's needs. I'll get to that in a moment, but first let me tell you a little about the book and it's author.
'Does She Know She's There', was written by the mother of a girl with a severe disability related to cerebral palsy. There are plenty of personal memoirs out there regarding kids with special needs (and I have a bookshelf full), but this one stands out.
Nicola Schaefer was ahead of her time. She gave birth to her daughter Catherine in 1961, about six months before I was born. In those days parents were strongly encouraged to institutionalize their kids with disabilities, and she got that speech along with the advice to go home and have another child right away. I loved her response to that doctor, a deadpanned, "What are my chances of having another dud?"
She kept Catherine at home and raised her alongside the two boys that came later. There were no services available to help her in day to day care back then. Nicola was inventive and optimistic and effected change by connecting with other parents and becoming a disability activist in 1970's Canada.
I wrote her a letter when I finished the book, and got a phone call in return. She's a funny, smart Brit and she inspires me to this day. Currently, her fifty year old daughter lives in a home that she's shared with friends for twenty-five years. There's always a full-time caregiver living with her, often a friend or relative. So much for institutions, this lady showed us all how it's done!
The sentiment in the book that continues to grab my attention the most is the need to create a network of friends for our kids. That's an issue I hadn't thought much (ok anything) about at the time. It resonated with me, even though Daniel was very young. If I don't work at the introductions, his typically developing peers aren't going to know him.
Recently I read another book by another mother, Sharon Dzialo, and it made me think of Nicola and Catherine. Sharon's son was injured in a near drowning accident the year that Daniel was born. Her book, 'Ceramic to Clay', details a lot about the efforts she and her husband Phil make in providing therapies to benefit Adam. She also wrote about her desire for Adam to have a friend (she expresses it beautifully through his voice in the chapter Adam's Ode).
I've been lax in the years since reading 'Does She Know She's There'. I took Daniel to an inclusive Sunday school class with kids his age, and I worked with other moms at his elementary school to be sure his class was included in activities in a similar way. Over time, though, I've gotten lazy.
Sharon's words brought to mind Nicola's and I feel the need to start acting on them. How do I go about it? When Daniel was about 4 years old I asked a neighbor if her son would like to come over to play with Daniel a couple of times a week. (I was trying to follow my mentor's advice.) I was rebuffed and I guess my skin is a little on the thin side, because I never really got over it. It kinda chapped my ass, as they say, but it's time to move on.
At thirteen, the boys in Daniel's peer group can't drive yet. I'm thinking of starting by seeking out guys a good ten years older than him so that he can attend things like football and baseball games. Sort of an older brother scenario. So yes, I'm considering the Big Brothers program. I'm a little hesitant to call them, because I don't know if they've ever served someone with a disability as severe as Daniel's before.
I just don't know a lot of twenty-somethings. Naturally I want to find someone with maturity and an open heart. All I know is that now is the time to begin. I think I'll ask a few of my friends to keep me on my toes by asking how it's going every so often. Accountability always helps when it comes to keeping me moving.
Here's to friends!
'Does She Know She's There', was written by the mother of a girl with a severe disability related to cerebral palsy. There are plenty of personal memoirs out there regarding kids with special needs (and I have a bookshelf full), but this one stands out.
Nicola Schaefer was ahead of her time. She gave birth to her daughter Catherine in 1961, about six months before I was born. In those days parents were strongly encouraged to institutionalize their kids with disabilities, and she got that speech along with the advice to go home and have another child right away. I loved her response to that doctor, a deadpanned, "What are my chances of having another dud?"
She kept Catherine at home and raised her alongside the two boys that came later. There were no services available to help her in day to day care back then. Nicola was inventive and optimistic and effected change by connecting with other parents and becoming a disability activist in 1970's Canada.
I wrote her a letter when I finished the book, and got a phone call in return. She's a funny, smart Brit and she inspires me to this day. Currently, her fifty year old daughter lives in a home that she's shared with friends for twenty-five years. There's always a full-time caregiver living with her, often a friend or relative. So much for institutions, this lady showed us all how it's done!
The sentiment in the book that continues to grab my attention the most is the need to create a network of friends for our kids. That's an issue I hadn't thought much (ok anything) about at the time. It resonated with me, even though Daniel was very young. If I don't work at the introductions, his typically developing peers aren't going to know him.
Recently I read another book by another mother, Sharon Dzialo, and it made me think of Nicola and Catherine. Sharon's son was injured in a near drowning accident the year that Daniel was born. Her book, 'Ceramic to Clay', details a lot about the efforts she and her husband Phil make in providing therapies to benefit Adam. She also wrote about her desire for Adam to have a friend (she expresses it beautifully through his voice in the chapter Adam's Ode).
I've been lax in the years since reading 'Does She Know She's There'. I took Daniel to an inclusive Sunday school class with kids his age, and I worked with other moms at his elementary school to be sure his class was included in activities in a similar way. Over time, though, I've gotten lazy.
Sharon's words brought to mind Nicola's and I feel the need to start acting on them. How do I go about it? When Daniel was about 4 years old I asked a neighbor if her son would like to come over to play with Daniel a couple of times a week. (I was trying to follow my mentor's advice.) I was rebuffed and I guess my skin is a little on the thin side, because I never really got over it. It kinda chapped my ass, as they say, but it's time to move on.
At thirteen, the boys in Daniel's peer group can't drive yet. I'm thinking of starting by seeking out guys a good ten years older than him so that he can attend things like football and baseball games. Sort of an older brother scenario. So yes, I'm considering the Big Brothers program. I'm a little hesitant to call them, because I don't know if they've ever served someone with a disability as severe as Daniel's before.
I just don't know a lot of twenty-somethings. Naturally I want to find someone with maturity and an open heart. All I know is that now is the time to begin. I think I'll ask a few of my friends to keep me on my toes by asking how it's going every so often. Accountability always helps when it comes to keeping me moving.
Here's to friends!
Friday, September 30, 2011
She said, she said; Time for he said
Daniel has PT, OT, and vision therapy at school. He was denied speech therapy years ago on the basis that his speech level is on par with his cognitive level. I fought it and took it downtown to the big shots, but he still only ended up with communication "services" rather than those offered by an SLP.
We had yet another evaluation by the speech therapist at his school last year that indicated he has the cognition of a rock. Her report said: "Unable to complete formal assessment. No communicative intent was observed. Point of origin may be to establish a reliable yes/no response, however,lack of awareness, intent, and motivation will make this very difficult."
Even though I knew that her report was dead wrong, and that her motivation was the consensus in Florida that any student classified as profoundly mentally handicapped is not eligible for speech/language services, it affected my motivation. I had been using YES NO cards with him, and instead of feeling inspired to prove her wrong, I lost enthusiasm. That was wrong on my part.
This week Daniel started speech and oral motor therapy in a private clinic. After only an hour with Daniel, this therapist had very concrete suggestions for decreasing the hands in the mouth habit he's acquired, and LOTS of great things to say about him.
She feels strongly that he's been underestimated. He responded to her requests appropriately, making the correct choices and identifying colors. He used head nodding for yes and no. She has high expectations for him, and says we're going to raise the bar to try and find out what's really inside of my boy.
I can't tell you how happy this makes me. Well, I can, but I don't know if you will get how excited I am by this validation. Depends on who you are. Parents of kids who are denied approriate services most likely fall into the "gets it" group.
The good news doesn't stop there, either. I got a letter from his new teacher telling me how well he's doing with the communication program she has going. In her words, "Daniel is a smart boy. Be as persistent as he is. Don't give up on him, he can do it. He may not always get the 'right' answer, but it's more important that he is actually going through the communication steps..."
Our private therapist says that Daniel has the mobility and the intelligence to do a lot more than he's doing. His new teacher agrees; now the work begins. I'm just thrilled to have people on our side for once regarding the speech/communication piece.
I think we may have turned a corner.
We had yet another evaluation by the speech therapist at his school last year that indicated he has the cognition of a rock. Her report said: "Unable to complete formal assessment. No communicative intent was observed. Point of origin may be to establish a reliable yes/no response, however,lack of awareness, intent, and motivation will make this very difficult."
Even though I knew that her report was dead wrong, and that her motivation was the consensus in Florida that any student classified as profoundly mentally handicapped is not eligible for speech/language services, it affected my motivation. I had been using YES NO cards with him, and instead of feeling inspired to prove her wrong, I lost enthusiasm. That was wrong on my part.
This week Daniel started speech and oral motor therapy in a private clinic. After only an hour with Daniel, this therapist had very concrete suggestions for decreasing the hands in the mouth habit he's acquired, and LOTS of great things to say about him.
She feels strongly that he's been underestimated. He responded to her requests appropriately, making the correct choices and identifying colors. He used head nodding for yes and no. She has high expectations for him, and says we're going to raise the bar to try and find out what's really inside of my boy.
I can't tell you how happy this makes me. Well, I can, but I don't know if you will get how excited I am by this validation. Depends on who you are. Parents of kids who are denied approriate services most likely fall into the "gets it" group.
The good news doesn't stop there, either. I got a letter from his new teacher telling me how well he's doing with the communication program she has going. In her words, "Daniel is a smart boy. Be as persistent as he is. Don't give up on him, he can do it. He may not always get the 'right' answer, but it's more important that he is actually going through the communication steps..."
Our private therapist says that Daniel has the mobility and the intelligence to do a lot more than he's doing. His new teacher agrees; now the work begins. I'm just thrilled to have people on our side for once regarding the speech/communication piece.
I think we may have turned a corner.
Thursday, September 22, 2011
Don't define my reality for me! Don't even try...
I am fighting feelings of frustration (I'm pissed) stemming from an interaction I had with someone who assumes that my life with Daniel is one of struggle and unhappiness.
My blog title is Daniel's Gift. Maybe gift should be plural, because he has more than one. He is one of the happiest people I know, or at least his smiles and belly laughs would indicate so. The guy wakes up smiling, for god's sake. He's funny. He has a sense of humor and cracks us up at times. He's just an all around cool dude. This doesn't mean that his disability is a gift per se, it means that we all have gifts to offer, disabled or not.
So, to clear my mind, I'm going to quote someone I have immense admiration for.
"It is worthwhile making a distinction between talents and gifts. More important than our talents are our gifts. We have only a few talents, but we have many gifts. Our gifts are the many ways in which we express our humanity. They are part of who we are: Friendship, kindness, patience, joy, peace, forgiveness, gentleness, love, hope, trust, and many others. These are the true gifts we have to offer to each other.
Somehow I have known this for a long time, especially through my personal experience of the enormous healing power of these gifts. But since my coming to live in a community with mentally handicapped people, I have rediscovered this simple truth. Few, if any, of those people have talents they can boast of. Few are able to make contributions to our society that allow them to earn money, compete on the open market, or win awards. But how splendid are their gifts! Bill, who suffered intensely as a result of shattered family relationships, has a gift for friendship that I have seldom experienced. Even when I grow impatient or distracted by other people, he remains always faithful and continues to support me in all I do. Linda, who has a speech handicap, has a unique gift for welcoming people. Many who have stayed in our community remember Linda as the one who made them feel at home. Adam, who is unable to speak, walk, or eat without help and who needs constant support, has the great gift of bringing peace to those who care for him and live with him. The longer I live in L'Arche, the more I recognize the true gifts that in us, seemingly non-handicapped people, often remain buried beneath our talents. The so-visible brokenness of our handicapped people has, in some mysterious way, allowed them to offer their gifts freely and without inhibition.
More surely than ever before, I know now that we are called to give our very lives to one another and that, in so doing, we become a true community of love."
~Henri Nouwen, Life of the Beloved: Spiritual Living in a Secular World
So there (I say, sticking my tongue out)!
My blog title is Daniel's Gift. Maybe gift should be plural, because he has more than one. He is one of the happiest people I know, or at least his smiles and belly laughs would indicate so. The guy wakes up smiling, for god's sake. He's funny. He has a sense of humor and cracks us up at times. He's just an all around cool dude. This doesn't mean that his disability is a gift per se, it means that we all have gifts to offer, disabled or not.
So, to clear my mind, I'm going to quote someone I have immense admiration for.
"It is worthwhile making a distinction between talents and gifts. More important than our talents are our gifts. We have only a few talents, but we have many gifts. Our gifts are the many ways in which we express our humanity. They are part of who we are: Friendship, kindness, patience, joy, peace, forgiveness, gentleness, love, hope, trust, and many others. These are the true gifts we have to offer to each other.
Somehow I have known this for a long time, especially through my personal experience of the enormous healing power of these gifts. But since my coming to live in a community with mentally handicapped people, I have rediscovered this simple truth. Few, if any, of those people have talents they can boast of. Few are able to make contributions to our society that allow them to earn money, compete on the open market, or win awards. But how splendid are their gifts! Bill, who suffered intensely as a result of shattered family relationships, has a gift for friendship that I have seldom experienced. Even when I grow impatient or distracted by other people, he remains always faithful and continues to support me in all I do. Linda, who has a speech handicap, has a unique gift for welcoming people. Many who have stayed in our community remember Linda as the one who made them feel at home. Adam, who is unable to speak, walk, or eat without help and who needs constant support, has the great gift of bringing peace to those who care for him and live with him. The longer I live in L'Arche, the more I recognize the true gifts that in us, seemingly non-handicapped people, often remain buried beneath our talents. The so-visible brokenness of our handicapped people has, in some mysterious way, allowed them to offer their gifts freely and without inhibition.
More surely than ever before, I know now that we are called to give our very lives to one another and that, in so doing, we become a true community of love."
~Henri Nouwen, Life of the Beloved: Spiritual Living in a Secular World
So there (I say, sticking my tongue out)!
Thursday, September 15, 2011
Genetics Visit
A few weeks ago we saw our geneticist, Dr. Perszyk. He spent a lot of time watching Daniel, sizing up his unique characteristics, and deciding what direction we should take in looking for a diagnosis.
Daniel hasn't had any testing done since 2002, and there are better methods out there nowadays. The glitch is that most companies that do the testing won't bill medicaid or many times even regular insurance. Doc assures me that we are VERY close to much cheaper, wide array testing and that we will have a definitive diagnosis one day.
In the meantime, he referred us to the Angelman Syndrome expert, Dr. Williams of the University of Florida, Gainesville. We'll see him on December 12. Based on the diagnostic criteria, Daniel qualifies for a clinical diagnosis even without the labs to back it up. He meets all of the features required, and most that aren't. Of course, the way chromosomes work, he could be affected by something extremely closely related to Angelman's that hasn't been discovered yet. Dr. Perszyk believes it's Angelman's, and that Dr. Williams will make the call.
Here's Mr. Happy himself, on an October day in 2007:
Here are some of the diagnostic criteria for Angelman's that Daniel meets:
Severe Developmental Delay
Ataxic Gait
Happy Demeanor
Hypermotoric
Easily excitable
Hand flapping
Microcephaly <2 SD
Seizures
Abnormal EEG
Hypotonia
Feeding problems
Drooling
Mouthing behaviors
Strabismus
Sensitivity to heat
Fascination with water
Abnormal food behaviors
It helps to have a diagnosis because then we have an idea of what to expect in the future. It's also good to know which chromosome was affected and whether it's due to an imprinting defect or the absence of a gene. It's the scientific part of me that wants/needs to know.
Ultimately, he's my angel with or without a diagnosis, typical or atypical, because I'm his mom and he's my boy!
Daniel hasn't had any testing done since 2002, and there are better methods out there nowadays. The glitch is that most companies that do the testing won't bill medicaid or many times even regular insurance. Doc assures me that we are VERY close to much cheaper, wide array testing and that we will have a definitive diagnosis one day.
In the meantime, he referred us to the Angelman Syndrome expert, Dr. Williams of the University of Florida, Gainesville. We'll see him on December 12. Based on the diagnostic criteria, Daniel qualifies for a clinical diagnosis even without the labs to back it up. He meets all of the features required, and most that aren't. Of course, the way chromosomes work, he could be affected by something extremely closely related to Angelman's that hasn't been discovered yet. Dr. Perszyk believes it's Angelman's, and that Dr. Williams will make the call.
Here's Mr. Happy himself, on an October day in 2007:
Here are some of the diagnostic criteria for Angelman's that Daniel meets:
Severe Developmental Delay
Ataxic Gait
Happy Demeanor
Hypermotoric
Easily excitable
Hand flapping
Microcephaly <2 SD
Seizures
Abnormal EEG
Hypotonia
Feeding problems
Drooling
Mouthing behaviors
Strabismus
Sensitivity to heat
Fascination with water
Abnormal food behaviors
It helps to have a diagnosis because then we have an idea of what to expect in the future. It's also good to know which chromosome was affected and whether it's due to an imprinting defect or the absence of a gene. It's the scientific part of me that wants/needs to know.
Ultimately, he's my angel with or without a diagnosis, typical or atypical, because I'm his mom and he's my boy!
Thursday, September 8, 2011
Trying Times
Lately I feel like I'm on high alert mode all of the time. I had a talk with myself this morning just to remind me that I can't change the outcome of anything that's happening. I can do my best to cover all bases, but in the end I have no real control.
Daniel's teacher and nurse called me at work the other day to report that he had a staring seizure. I gave him extra Topamax and watched him, but everything seemed fine. Then the bus driver told his sister at drop off that he had a "small seizure" and she brought him out of it.
I'm doubtful that these are true seizures. Now, I know that the staring petit mal types can be very brief, but he seems to be responsive during these episodes. He tends to space out from time to time, but he always looks at me when I say his name. I don't want to overmedicate if it's not true seizure activity. Looks like it might be time for another EEG.
Rich has nine more radiation and two more chemotherapy treatments to go. He's not feeling especially optimistic about things, and that has me worried, too.
In the end, I can pray, I can take deep breaths, and make sure both guys get to their appointments and take their medications. I can be watchful and responsible for what I see and that's all.
As my father-in-law used to say, these are interesting times. Personally, I'm ready for a little boredom.
Daniel's teacher and nurse called me at work the other day to report that he had a staring seizure. I gave him extra Topamax and watched him, but everything seemed fine. Then the bus driver told his sister at drop off that he had a "small seizure" and she brought him out of it.
I'm doubtful that these are true seizures. Now, I know that the staring petit mal types can be very brief, but he seems to be responsive during these episodes. He tends to space out from time to time, but he always looks at me when I say his name. I don't want to overmedicate if it's not true seizure activity. Looks like it might be time for another EEG.
Rich has nine more radiation and two more chemotherapy treatments to go. He's not feeling especially optimistic about things, and that has me worried, too.
In the end, I can pray, I can take deep breaths, and make sure both guys get to their appointments and take their medications. I can be watchful and responsible for what I see and that's all.
As my father-in-law used to say, these are interesting times. Personally, I'm ready for a little boredom.
Saturday, September 3, 2011
For Chet
It's hard to believe that a week has already gone by since we got the call from hospice telling us that my father-in-law died in his sleep. My emails from him are changing from the "on Thursday, on Friday..." to "last week" status. He always signed his emails "Cheers". The jokes he sent me that morning are still in my inbox. My last message to him remains unanswered.
He was 84 and he knew it was coming. He wanted to know exactly when the day would arrive, but of course those are the kinds of things we can never pinpoint. So, instead he planned the best he could by making sure every detail of his death would be covered: Cremation, burial, even his obit was written by him ahead of time.
Chet loved to write. When we met in 2003 and he learned that a small, independent press published my book in 1994, he told me it inspired him to finish his own and get it printed. He called it 'Seize the Carp' in it's first incarnation, and later changed the title to 'Chet Chat' when he revised it.
The cover describes it as:
Anthology of reminiscences, free verse, letters, whimsy, vignettes, opinions, observations and other stuff.
"A good bathroom book, for several reasons."....Clyde Womsley
"Fabulous coffee table book; big enough to cover stains and scratches."...B. Little
"Great Christmas gift; better than fruitcake."....Karen Stone
He was a WWII veteran, and a retired insurance salesman. He took up downhill skiing at the age of 50. His wife Betsy, married to him for 64 years, keeps telling me, "He had a great life. He did everything he wanted to do." And he did, as far as I know.
Even though we knew he had terminal cancer, we were taken by surprise when we got the call last Friday evening. He was stable for weeks. There was no sudden decline and bedside vigil. He laid down for a nap and didn't wake up.
The suddenness was hard for my husband. After a day of radiation and chemo, he was utterly exhausted when he learned that his dad died. He stayed awake the entire night grieving. Yet, I believe that by leaving us quickly, Chet was making sure that there was no need for hospitals or long, drawn-out goodbyes. Even in death he was courteous.
He didn't want a funeral or a memorial, just a small family gathering. Since he will be buried in the National Cemetery, we'll all be together then. Hopefully Rich will have all of this radiation and chemo business behind him and be feeling stronger by then. He has two weeks to go and then a scan to see if all of the super-sonic proton beams have done their job. I know that Chet is using any pull he now has on the other side to help Rich get through this last bit so that he can begin to recover.
We will all miss you, Chet. I'm not going to say goodbye, though. It's until I see you again. Till then, Cheers!
He was 84 and he knew it was coming. He wanted to know exactly when the day would arrive, but of course those are the kinds of things we can never pinpoint. So, instead he planned the best he could by making sure every detail of his death would be covered: Cremation, burial, even his obit was written by him ahead of time.
Chet loved to write. When we met in 2003 and he learned that a small, independent press published my book in 1994, he told me it inspired him to finish his own and get it printed. He called it 'Seize the Carp' in it's first incarnation, and later changed the title to 'Chet Chat' when he revised it.
The cover describes it as:
Anthology of reminiscences, free verse, letters, whimsy, vignettes, opinions, observations and other stuff.
"A good bathroom book, for several reasons."....Clyde Womsley
"Fabulous coffee table book; big enough to cover stains and scratches."...B. Little
"Great Christmas gift; better than fruitcake."....Karen Stone
He was a WWII veteran, and a retired insurance salesman. He took up downhill skiing at the age of 50. His wife Betsy, married to him for 64 years, keeps telling me, "He had a great life. He did everything he wanted to do." And he did, as far as I know.
Even though we knew he had terminal cancer, we were taken by surprise when we got the call last Friday evening. He was stable for weeks. There was no sudden decline and bedside vigil. He laid down for a nap and didn't wake up.
The suddenness was hard for my husband. After a day of radiation and chemo, he was utterly exhausted when he learned that his dad died. He stayed awake the entire night grieving. Yet, I believe that by leaving us quickly, Chet was making sure that there was no need for hospitals or long, drawn-out goodbyes. Even in death he was courteous.
He didn't want a funeral or a memorial, just a small family gathering. Since he will be buried in the National Cemetery, we'll all be together then. Hopefully Rich will have all of this radiation and chemo business behind him and be feeling stronger by then. He has two weeks to go and then a scan to see if all of the super-sonic proton beams have done their job. I know that Chet is using any pull he now has on the other side to help Rich get through this last bit so that he can begin to recover.
We will all miss you, Chet. I'm not going to say goodbye, though. It's until I see you again. Till then, Cheers!
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