We're headed to the geneticist's office this morning. We first met Dr. P when Daniel was just four weeks old. Every few years or so we revisit and see what's new in the world of genetics that might explain his unique challenges.
I am hoping that we can also get some feedback about growth hormone. Daniel's levels are very low, so we started supplementation last October. I stopped when his appetite got out of control and I wasn't seeing the increase in strength and stamina that the endocrinologist predicted. My knees were giving out, and I was wearing a brace everyday when I stopped the gh this summer. I don't want to withhold something that will be helpful to Daniel, and I respect Dr. P, so we're going to talk about it.
I plan to ask about alternative ways to have genetic testing done. I suspect a variant of Angelman's/Retts, and there are new tests available to explore that. The problem is that medicaid doesn't cover genetic testing for Daniel. It's partly his age, and also the state we live in. I'm hoping that we can get him tested through a research avenue.
I go back to work on Thursday for the new school year. Rich is getting a ride this morning from a guy we just met named Daniel. Call me superstitious, but his having the same name as my boy is good juju in my book! He's a friend of a friend and seems very dependable.
On the same note, a neighbor I've only waved to in passing offered to bring dinner on Thursday. Apparently Rich told her all about his diagnosis. I'm glad one of us is friendly in this house!
Random side note: Last night in the van Elton John's 'Daniel' was playing. I watched in the rearview mirror as my Daniel lit up. Huge, slightly embarrased smiles and lots of laughter and clapping. When we got home I wanted to recapture the moment on video, so I played the song again. Daniel put his head on the table and fussed at me. Guess he's not into performing on command. Can't say I blame him.
Off we go!
Monday, August 15, 2011
Wednesday, August 10, 2011
Unexpected Kindness
Yesterday was a rough day. A series of snafus landed at my feet all at once, and I was aggravated, angry and tired.
Then the mail came. A box! An Amazon.com box, one of my favorites! My guilty pleasure when I got my first real nursing job back in 1983 was to browse the bookstore catalogs as soon as my paycheck landed in the bank. I can survive on the same pair of shoes until the heels are hole-ridden, but my bookshelf goods never cease to multiply.
Yesterday's arrival was a surprise. I hadn't ordered anything in over a month. I ripped open the tape and tried to find out who the mystery sender was. It took me a few minutes, and all the while I was thinking, "whoever sent this KNOWS how to make me feel better." It was definitely from someone who understands my weaknesses and the way into my heart.
Finally, I found the gift note. It read, "I hope this book gives you both uplifting, as it has for me. Love, Aunt Barb." The title of the book: The Book of Awakening. Yep, my birthday buddy knows me well (Barb and I are both January 23rd babies, true Aquarians through and through.)
The entry in the book for August 10 reads, "...our lives are full of unexpected surges of kindness that seem to come from nowhere. Just when you're thirsty, a cup is gathered and passed around. Just when you are lonely to the point of snapping that bone way inside that you show no one, someone offers you a ride or steadies the grocery bag about to drop from your grip. Just when you feel nothing can raise your sad head from the lonely road, the deer stutter across the road in exact rhythm with Handel."
It landed in my mailbox at the right moment to help me through a rough patch. Thank you, Aunt Barb!
Then the mail came. A box! An Amazon.com box, one of my favorites! My guilty pleasure when I got my first real nursing job back in 1983 was to browse the bookstore catalogs as soon as my paycheck landed in the bank. I can survive on the same pair of shoes until the heels are hole-ridden, but my bookshelf goods never cease to multiply.
Yesterday's arrival was a surprise. I hadn't ordered anything in over a month. I ripped open the tape and tried to find out who the mystery sender was. It took me a few minutes, and all the while I was thinking, "whoever sent this KNOWS how to make me feel better." It was definitely from someone who understands my weaknesses and the way into my heart.
Finally, I found the gift note. It read, "I hope this book gives you both uplifting, as it has for me. Love, Aunt Barb." The title of the book: The Book of Awakening. Yep, my birthday buddy knows me well (Barb and I are both January 23rd babies, true Aquarians through and through.)
The entry in the book for August 10 reads, "...our lives are full of unexpected surges of kindness that seem to come from nowhere. Just when you're thirsty, a cup is gathered and passed around. Just when you are lonely to the point of snapping that bone way inside that you show no one, someone offers you a ride or steadies the grocery bag about to drop from your grip. Just when you feel nothing can raise your sad head from the lonely road, the deer stutter across the road in exact rhythm with Handel."
It landed in my mailbox at the right moment to help me through a rough patch. Thank you, Aunt Barb!
Saturday, July 30, 2011
Deja Vu all over again
Daniel was a small baby. He finally reached the ten pound mark at one year of age, and that first year I put most of my energy into getting him there. I pumped milk, added powders to make it heftier calorie-wise, and supplemented with formula--the kind that was easily digestible (which, if you're familiar with special formulas, you'll know was not pleasing to the nostrils).
Turns out, Daniel was just programmed to be on the tiny side. At almost thirteen years of age he's only quadrupled that 12 month weight. He's 42 pounds and a few ounces. He still drinks most of his meals. He will eat well for the school staff, but not for mom. I don't sweat it. Every now and then I offer him food, and sometimes he takes it. Most of the time he smiles and raspberries it back at me.
The early days of trying to plump Daniel up came back to me as Rich started treatment for cancer two weeks ago. He had all of his teeth pulled, so he can't chew. Radiation is going to cause weight loss, and he'll need to consume about 2100 calories a day just to maintain his current weight. He may have to resort to a feeding tube before it's all over, but knowing my strong man, there's a good chance we'll avoid that step.
Back to my deja vu. I'm measuring and counting and coaxing Rich to drink the shakes and eat the chicken noodle soup I make for him. I'm using supplemental whey protein in the shakes to prevent muscle wasting. It's going well so far, but realistically, we're only into week one. We've got six more to go.
I'm starting to hum 'Circle of Life' in curiosity at how my life does just that. It circles. That isn't necessarily a bad thing. I know that we'll manage this, just like Daniel and I did twelve years ago when we were hitting the scales every other day at the peds office, in between therapies and other specialist visits.
I guess that's one of the silver linings of living with disability. You develop a tenaciousness that serves you pretty well when things go south. Then again, maybe I just haven't hit the wall yet. I'll let you know.
Turns out, Daniel was just programmed to be on the tiny side. At almost thirteen years of age he's only quadrupled that 12 month weight. He's 42 pounds and a few ounces. He still drinks most of his meals. He will eat well for the school staff, but not for mom. I don't sweat it. Every now and then I offer him food, and sometimes he takes it. Most of the time he smiles and raspberries it back at me.
The early days of trying to plump Daniel up came back to me as Rich started treatment for cancer two weeks ago. He had all of his teeth pulled, so he can't chew. Radiation is going to cause weight loss, and he'll need to consume about 2100 calories a day just to maintain his current weight. He may have to resort to a feeding tube before it's all over, but knowing my strong man, there's a good chance we'll avoid that step.
Back to my deja vu. I'm measuring and counting and coaxing Rich to drink the shakes and eat the chicken noodle soup I make for him. I'm using supplemental whey protein in the shakes to prevent muscle wasting. It's going well so far, but realistically, we're only into week one. We've got six more to go.
I'm starting to hum 'Circle of Life' in curiosity at how my life does just that. It circles. That isn't necessarily a bad thing. I know that we'll manage this, just like Daniel and I did twelve years ago when we were hitting the scales every other day at the peds office, in between therapies and other specialist visits.
I guess that's one of the silver linings of living with disability. You develop a tenaciousness that serves you pretty well when things go south. Then again, maybe I just haven't hit the wall yet. I'll let you know.
Saturday, July 23, 2011
It's Staged
My husband Rich's throat cancer is a 4a, which means it is in lymph nodes on both sides. We went to the follow-up after his biopsy and scans, and the entire team of specialists seeing a clinic full of newly diagnosed patients gave us the news.
They were optimistic from the get-go. 90% cure rate with proton radiation and chemo. If that doesn't work, surgery on whatever nodes are still affected. We are home to one of only nine proton radiation centers in the country here in Jacksonville. We're lucky in that regard.
One important thing to know if you have to have radiation to an area close to your jaw, is that your teeth better be in perfect condition or they have to go. We already knew that Rich needed $14 grand worth of dental work, so in order to expedite things, they were all pulled. At once. They have to do that because if dental work is ever necessary at any time in the future post-radiation, hyperbaric oxygen has to be used, and it's very tricky for the area to heal. Just one of the inevitable after-effects of the cure.
It's gonna be a rough ride. There's no sugar coating that fact. I'm just grateful for our caregiver, Rita. She came into our lives at exactly the right time last September. We were finally added to the med-waiver a year ago (after a complicated process of qualifying under the crisis label). Before that, I was on my own for eleven years. Now that Rita's on the scene, I am comfortable with Daniel being cared for by someone else, and that is huge with all that's going on.
With family 900 miles away, Rich's dad dying of lung cancer and his mom unable to drive, we don't have a lot of blood-line support. Certain friends (you know who you are) have stepped up and called Rich offering rides and emotional support. When I go back to work in August we will need those extra hands. Rides are pretty much covered through the American Cancer Society, so the help we need will be more local and involve things like errands and such.
Starting next week it's twice a day radiation and once a week chemo for seven weeks. Less than a season, I keep telling him. We will get through it.
I did take an hour out with my daughter to float in the ocean a couple of days ago. We dodged waves, soaked up the sun, and felt the ocean breeze cool us in this insane heat we're having. That one hour renewed me. We also ate sushi next door to the pharmacy while waiting for Rich's meds to be filled. People keep reminding me to take care of myself, and I think I did a pretty good job that day.
Rich is an amazing singer and guitarist. He has a beautiful voice, and has sang and played in bands since he was 14. I really want to give him something extra to help him through this, so I've been trying to contact his favorite singer, Tommy Shaw. He has a sound similar to Tommy's, who sang for Styx for awhile. I'd love it if we could get an autographed photo with a note or something. Just putting that out there, Universe!
The stage is set, now we just have to play this thing out to the end. I remind Rich everyday that by Christmas we'll be standing in front of the tree getting a picture snapped with his new pearly whites in place, and all of this behind us. That's the plan!
They were optimistic from the get-go. 90% cure rate with proton radiation and chemo. If that doesn't work, surgery on whatever nodes are still affected. We are home to one of only nine proton radiation centers in the country here in Jacksonville. We're lucky in that regard.
One important thing to know if you have to have radiation to an area close to your jaw, is that your teeth better be in perfect condition or they have to go. We already knew that Rich needed $14 grand worth of dental work, so in order to expedite things, they were all pulled. At once. They have to do that because if dental work is ever necessary at any time in the future post-radiation, hyperbaric oxygen has to be used, and it's very tricky for the area to heal. Just one of the inevitable after-effects of the cure.
It's gonna be a rough ride. There's no sugar coating that fact. I'm just grateful for our caregiver, Rita. She came into our lives at exactly the right time last September. We were finally added to the med-waiver a year ago (after a complicated process of qualifying under the crisis label). Before that, I was on my own for eleven years. Now that Rita's on the scene, I am comfortable with Daniel being cared for by someone else, and that is huge with all that's going on.
With family 900 miles away, Rich's dad dying of lung cancer and his mom unable to drive, we don't have a lot of blood-line support. Certain friends (you know who you are) have stepped up and called Rich offering rides and emotional support. When I go back to work in August we will need those extra hands. Rides are pretty much covered through the American Cancer Society, so the help we need will be more local and involve things like errands and such.
Starting next week it's twice a day radiation and once a week chemo for seven weeks. Less than a season, I keep telling him. We will get through it.
I did take an hour out with my daughter to float in the ocean a couple of days ago. We dodged waves, soaked up the sun, and felt the ocean breeze cool us in this insane heat we're having. That one hour renewed me. We also ate sushi next door to the pharmacy while waiting for Rich's meds to be filled. People keep reminding me to take care of myself, and I think I did a pretty good job that day.
Rich is an amazing singer and guitarist. He has a beautiful voice, and has sang and played in bands since he was 14. I really want to give him something extra to help him through this, so I've been trying to contact his favorite singer, Tommy Shaw. He has a sound similar to Tommy's, who sang for Styx for awhile. I'd love it if we could get an autographed photo with a note or something. Just putting that out there, Universe!
The stage is set, now we just have to play this thing out to the end. I remind Rich everyday that by Christmas we'll be standing in front of the tree getting a picture snapped with his new pearly whites in place, and all of this behind us. That's the plan!
Saturday, July 9, 2011
It can all change on a dime
Daniel and I made it through the first week of summer school. Both of us were jittery, and it took time to adjust to getting up so early again. I was my usual neurotic bundle of nerves the first two days while I learned a whole new routine with different students, lots of tube feedings, meds, and all new people. Everyone who has worked there before told me he and I would both love it, but of course I had my doubts. They were right (my friends, that is, not my inner doubts).
Just as the week wound down to a close, though, everything changed. Our world was rocked big-time. My sweet man who I just celebrated one year of marriage to was diagnosed with throat cancer. We don't know the full extent yet; the results will be in on Monday. To say I'm shocked, numb, scared, freaked...those words just, well, they don't seem to pack the right punch for what's going on in me right now.
Everyone who knows me knows that I've always been open to alternatives but I don't balk at traditional treatments. So, the best thing I can find for my hands to do right now (besides ordering the smokeless cigarettes for him that are on their way now), is research and use the tools I have to help boost his immune system. I also ask that everyone remember him in their prayers, drum circles, meditations, whatever positive energy path you employ!
This is one hurdle we've not had to jump before. We're gonna need more than a few friends to help boost us over.
Just as the week wound down to a close, though, everything changed. Our world was rocked big-time. My sweet man who I just celebrated one year of marriage to was diagnosed with throat cancer. We don't know the full extent yet; the results will be in on Monday. To say I'm shocked, numb, scared, freaked...those words just, well, they don't seem to pack the right punch for what's going on in me right now.
Everyone who knows me knows that I've always been open to alternatives but I don't balk at traditional treatments. So, the best thing I can find for my hands to do right now (besides ordering the smokeless cigarettes for him that are on their way now), is research and use the tools I have to help boost his immune system. I also ask that everyone remember him in their prayers, drum circles, meditations, whatever positive energy path you employ!
This is one hurdle we've not had to jump before. We're gonna need more than a few friends to help boost us over.
Sunday, July 3, 2011
Freedom
If
by Rudyard Kipling
If you can keep your head when all about you
Are losing theirs and blaming it on you;
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or, being lied about, don't deal in lies,
Or, being hated, don't give way to hating,
And yet don't look too good, nor talk too wise;
If you can dream - and not make dreams your master;
If you can think - and not make thoughts your aim;
If you can meet with triumph and disaster
And treat those two imposters just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to broken,
And stoop and build 'em up with wornout tools;
If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breath a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: "Hold on";
If you can talk with crowds and keep your virtue,
Or walk with kings - nor lose the common touch;
If neither foes nor loving friends can hurt you;
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds' worth of distance run -
Yours is the Earth and everything that's in it,
And - which is more - you'll be a Man
by Rudyard Kipling
If you can keep your head when all about you
Are losing theirs and blaming it on you;
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or, being lied about, don't deal in lies,
Or, being hated, don't give way to hating,
And yet don't look too good, nor talk too wise;
If you can dream - and not make dreams your master;
If you can think - and not make thoughts your aim;
If you can meet with triumph and disaster
And treat those two imposters just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to broken,
And stoop and build 'em up with wornout tools;
If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breath a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: "Hold on";
If you can talk with crowds and keep your virtue,
Or walk with kings - nor lose the common touch;
If neither foes nor loving friends can hurt you;
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds' worth of distance run -
Yours is the Earth and everything that's in it,
And - which is more - you'll be a Man
Friday, July 1, 2011
Sweet Summer Days
It has been such a peaceful week. Melody is on her pilgrimage with the youth group to PA and NY, and it's my last week off before going back to work for the summer school session. We haven't done much in the way of exciting stuff, but everyday has been good.
It might be due to the Zantac, or the alignment of the moon and stars, but Daniel has been calm and happy all week long. We've had a lot of doctor's appointments and errands to check off the list. He's smiled through all of them.
Tonight Rich and I had crab legs at a favorite restaurant on the beach while Daniel hung out with his caregiver for a few hours. He loves that woman. He hadn't seen her all week because we were out of respite for the fiscal year, and when she got here his face lit up.
Good news came our way today, too. We've been approved (after two denials) for personal care attendant hours for Daniel. It took some fighting, mostly on our caregiver's part, but we beat the system for once. Someone at Medicaid told her that she and I should be poster people for getting an approval with the new agency in charge, because so far all they've seen are denials for PC.
Life is good.
It might be due to the Zantac, or the alignment of the moon and stars, but Daniel has been calm and happy all week long. We've had a lot of doctor's appointments and errands to check off the list. He's smiled through all of them.
Tonight Rich and I had crab legs at a favorite restaurant on the beach while Daniel hung out with his caregiver for a few hours. He loves that woman. He hadn't seen her all week because we were out of respite for the fiscal year, and when she got here his face lit up.
Good news came our way today, too. We've been approved (after two denials) for personal care attendant hours for Daniel. It took some fighting, mostly on our caregiver's part, but we beat the system for once. Someone at Medicaid told her that she and I should be poster people for getting an approval with the new agency in charge, because so far all they've seen are denials for PC.
Life is good.
Tuesday, June 28, 2011
Sunday, June 26, 2011
Lava Lamps and Tie Dye
Daniel's caregiver is in the process of making his room more of a sensory den for him. She bought a black light, lava lamps, and glow-in-the-dark stars. As mentioned in the last post, I am trying to find new music for him to divert the hands from his mouth, and one thing that works is drumming. Santana was a hit, but since I don't have any of it on CD yet, he's been jamming to Michael Jackson all weekend.
To complete what's turning into a seventies theme, we tie dyed shirts yesterday. Daniel's turned out the best in green, yellow and blue. He is LOVING his cool digs, but as you can see from the picture below, he's not ready to give up the hand habit just yet.
He's been very calm and happy the past few days, and I believe the glowing sensory additions in his room have helped. Since I've not been feeling well, it helps when he's able to play and be entertained by his surroundings. I feel anxious when I'm sick and I don't have the energy to take him for walks or get his AFO's on for some exercise. He's been ok with it all.
Tomorrow we start the countdown to summer school for both of us. I can't say I'm looking forward to getting us both up, ready, and downtown by 8 a.m. The past few weeks have been heaven. Sleeping in, no schedule...we have both loved it. I may have to spend some time gazing at stars in his room, giving myself pep talks before July 5th. For now, let the drums keep rolling!
To complete what's turning into a seventies theme, we tie dyed shirts yesterday. Daniel's turned out the best in green, yellow and blue. He is LOVING his cool digs, but as you can see from the picture below, he's not ready to give up the hand habit just yet.
He's been very calm and happy the past few days, and I believe the glowing sensory additions in his room have helped. Since I've not been feeling well, it helps when he's able to play and be entertained by his surroundings. I feel anxious when I'm sick and I don't have the energy to take him for walks or get his AFO's on for some exercise. He's been ok with it all.
Tomorrow we start the countdown to summer school for both of us. I can't say I'm looking forward to getting us both up, ready, and downtown by 8 a.m. The past few weeks have been heaven. Sleeping in, no schedule...we have both loved it. I may have to spend some time gazing at stars in his room, giving myself pep talks before July 5th. For now, let the drums keep rolling!
Thursday, June 23, 2011
Drum Contest--We Have a Winner!
Daniel loves to drum. He also loves to put his hands in his mouth. When he's doing the former, we get a lot less of the latter. So, I've been trying to figure out what his favorite tunes are. He likes a lot of different music, (he does come from a family of musicians and singers, after all). I spent part of yesterday playing a variety of stuff to see what gets the best reaction.
So, what were the final results?? Drum roll, please......
Santana wins by a landslide! Especially this familiar tune--
Rock on, Daniel, rock on!
So, what were the final results?? Drum roll, please......
Santana wins by a landslide! Especially this familiar tune--
Rock on, Daniel, rock on!
Saturday, June 18, 2011
Blessings
The other day my cousin Sue shared a song with me via Facebook. It's called Blessings, by Laura Story.
One of the lyrics is, "this is not our home." That brought back a poignant memory from when Daniel was just over a month old.
We had no diagnosis at that time, other than microcephaly. We'd been to the geneticist, all tests were normal. They told us to "wait and see". He could develop normally. Some people just have small heads.
On a beautiful, sunny day in February our pediatrician called after a visit with the geneticist. She said that the two had talked and decided we needed to be admitted for Failure to Thrive.
Wait. He's gained weight! That's not what Dr. P says. No! He has! I have it written in my log. I'm on the phone outside while Melody plays on the porch. My mom and dad are still in Florida following his birth, helping us out everyday. I don't want to leave. I DO NOT want a hospital admission. My son is FINE.
The decision was made. They admitted us to the Children's Hospital to monitor my milk supply (it was fabulous, I felt I could get side work as a wet nurse), keep close tabs on his weight, and maybe do a few more tests to see what was up with this tiny boy with the small head and big ears.
I was so sad. I just kept repeating to myself "this is not our real home." (Meaning earth.) I was terrified.
During our stay I kept my log of his weights, weighing him before and after every feeding. He DID gain, although not alot. Still, the pediatrician didn't want to let us go home after 3 days because the nurse's notes didn't reflect what my notes did.
I showed her my record again, and we weighed him once more. We went home late that evening. I think I let go a little, too. I knew then that Daniel would not be a typical boy. I knew in my heart that we were going to face hard things.
In the song she asks, "What if the trials of this life, are your mercies in disguise?"
I do know that what looked unbearable to me at that time turned out to be just fine. Are there struggles? Yes. But the happiness definitely outweighs them. He enjoys life, we enjoy him. That's all I know for sure.
One of the lyrics is, "this is not our home." That brought back a poignant memory from when Daniel was just over a month old.
We had no diagnosis at that time, other than microcephaly. We'd been to the geneticist, all tests were normal. They told us to "wait and see". He could develop normally. Some people just have small heads.
On a beautiful, sunny day in February our pediatrician called after a visit with the geneticist. She said that the two had talked and decided we needed to be admitted for Failure to Thrive.
Wait. He's gained weight! That's not what Dr. P says. No! He has! I have it written in my log. I'm on the phone outside while Melody plays on the porch. My mom and dad are still in Florida following his birth, helping us out everyday. I don't want to leave. I DO NOT want a hospital admission. My son is FINE.
The decision was made. They admitted us to the Children's Hospital to monitor my milk supply (it was fabulous, I felt I could get side work as a wet nurse), keep close tabs on his weight, and maybe do a few more tests to see what was up with this tiny boy with the small head and big ears.
I was so sad. I just kept repeating to myself "this is not our real home." (Meaning earth.) I was terrified.
During our stay I kept my log of his weights, weighing him before and after every feeding. He DID gain, although not alot. Still, the pediatrician didn't want to let us go home after 3 days because the nurse's notes didn't reflect what my notes did.
I showed her my record again, and we weighed him once more. We went home late that evening. I think I let go a little, too. I knew then that Daniel would not be a typical boy. I knew in my heart that we were going to face hard things.
In the song she asks, "What if the trials of this life, are your mercies in disguise?"
I do know that what looked unbearable to me at that time turned out to be just fine. Are there struggles? Yes. But the happiness definitely outweighs them. He enjoys life, we enjoy him. That's all I know for sure.
Monday, June 13, 2011
Summer Time!
Our last day of school was Friday, so today is the official start of summer for us. It was so nice to get up the lazy way today! Daniel and I were the first ones up at about 7:45. He played, I drank coffee, talked to my mom on the phone, then we went for a walk.
Saturday we attended a L'Arche carnival fundraiser at Christ the King Church. I've made a commitment to myself to become involved with the L'Arche community this year, and I started there. I met the director, a few of the core members, and some assistants. I plan to attend First Thursday mass followed by dinner in a different home as often as I can starting in September. We did this once before, and in checking old emails, I discovered it's been six years!
Reading 'The Boy in the Moon' inspired me to get involved with L'Arche in a deeper way. I don't know if Daniel will ever live apart from me, but if he does, I'd like it to be in one of these communities where life together is about friendship, not the typical caregiver-patient arrangement.
We went swimming again Saturday evening. He's really getting used to the new suit with the flotation, and had a great time splashing. He enjoyed that more than the heat of the carnival.
He and I have three weeks off followed by summer school together. I'll be working and he'll be attending a different school (different from both his and my usual schools) for three and a half weeks. It's a center school, meaning all of the students have disabilities. I spent a day of orientation there last month, and I was impressed with the atmosphere. It will be good to be exposed to different therapists and teachers. I'm hoping we'll both learn some new tricks to make life more interesting!
It's good to have a break from the usual grind. Yay summer!
Saturday we attended a L'Arche carnival fundraiser at Christ the King Church. I've made a commitment to myself to become involved with the L'Arche community this year, and I started there. I met the director, a few of the core members, and some assistants. I plan to attend First Thursday mass followed by dinner in a different home as often as I can starting in September. We did this once before, and in checking old emails, I discovered it's been six years!
Reading 'The Boy in the Moon' inspired me to get involved with L'Arche in a deeper way. I don't know if Daniel will ever live apart from me, but if he does, I'd like it to be in one of these communities where life together is about friendship, not the typical caregiver-patient arrangement.
We went swimming again Saturday evening. He's really getting used to the new suit with the flotation, and had a great time splashing. He enjoyed that more than the heat of the carnival.
He and I have three weeks off followed by summer school together. I'll be working and he'll be attending a different school (different from both his and my usual schools) for three and a half weeks. It's a center school, meaning all of the students have disabilities. I spent a day of orientation there last month, and I was impressed with the atmosphere. It will be good to be exposed to different therapists and teachers. I'm hoping we'll both learn some new tricks to make life more interesting!
It's good to have a break from the usual grind. Yay summer!
Tuesday, June 7, 2011
Sunday, June 5, 2011
Pool Time
Daniel loves water. He has ever since he was a fussy baby. When he cried, all I had to to was sink into a warm tub of water with him and he'd settle right down. Bathtime is still a favorite for him, and he soaks the floor with his splashing (thank god for tile!). Today we stretched, kicked, floated and splashed our way through a Sunday afternoon. It was bliss.
Saturday, June 4, 2011
A Typical Saturday Morning
I love lazy Saturday mornings with my boy when we're the only ones awake in the house. All is well in our world.
Saturday, May 21, 2011
The Boy in the Moon
The interview stirred up a lot of feelings within the disability community because of a comment he made about "disability masochists", which he defined as people who make their disabled child the most important, indeed the only important thing in their lives. He also said that he hesitated to write his book since he'd been turned off by some of the "misery memoirs" he'd read over the years.
After listening to part of the interview, I read some of the blogging going on about his comments. I found some wonderful, intelligent, very outspoken people out there who are raising severely disabled children. They weren't letting Brown get off easily for those unfortunate labels! I'm glad they were able to succinctly say what I was thinking.
I also turned to my Nouwen library to try and clarify my own thoughts about the worth of a life lived with severe limitations. I blogged a little about L'Arche, and what that philosophy means. It was a tiny touch of what it means, by the way. I'm so busy with day to day things that I don't have the luxury of writing as much as I'd like to.
Finally, I ordered my own copy of Brown's book so that I could put it all in context. Wow. What a cool find!
There is an entire section on his experience with L'Arche, including time spent with the founder of the movement, Jean Vanier. I don't know if he spoke of this in the NPR interview, because I never found time to listen to the entire thing. I had no idea that Brown was influenced by this community of people who live together, disabled and non-disabled. It was fascinating for me to read, although I must admit that I only got the book in the mail yesterday, and sped through it as fast as I could last night, due to very tired eyes and body. (Geez, I'm sounding pretty attention-challenged. I didn't listen to the entire NPR interview, and I skimmed the book. I plan to remedy both during my summer break. Being a school nurse has it's advantages!)
When I first read the term "disability masochist", my honest fear was that I might fit his definition. It's not a nice label, no one wants the word "masochist" applied to them (no one I know, anyway). It didn't take me long to realize that there is nothing masochistic about my love for Daniel and the enjoyment I get from living with him and caring for him. If someone doesn't find this life fulfilling, then perhaps it could be seen as self-torture to continue on out of duty alone. Not in this home, though.
In the end, I think it's an unfortunate term. His book is good. It's very thought provoking and well written. Brown is a writer by profession, and he tells a fine story.
Disability masochism is not really the important conversation to keep going. And for the record, I have never met anyone who fits the description. The parents I've encountered balance their lives the best they can. Having a child with extraordinary needs does make a huge difference in how you are able to organize your time, but it doesn't always have to be as limiting as might be imagined. I'm only speaking from my biased personal experience.
There are more compelling discussions that his book can and should bring about.
I love Brown's words on page 270.
"These days I have a fantasy of my own. In my fantasy, Walker and people like him live in a L'Arche-like community, with the help of assistants. It's a beautiful place, in a beautiful spot, with a view of the sea or the mountains, because for once, in this place, it isn't just those who can afford them who have access to the best views, but people who might need beauty even more, because they live with so much less. In my fantasy, this village is owned and inhabited by the disabled, on their schedule, at their pace, according to their standards of what is successful--not money or results, but friendship, and fellow feeling, and companionship. In my fantasy, it is the rest of us, the normals, who have to be "integrated" into their society, who have to adapt to their pace and their place. I can leave, I can go back to my more pressing and ambitious and even more interesting life, but I can also return to live with Walker, as Walker lives--slowly, and without much of an agenda beyond merely being himself."
Now, on to read Brown's book more slowly on this Saturday morning, and indulge a few of my own fantasies for the future. After all, nothing happens unless you first dream it.
Saturday, May 14, 2011
Gifts and Gratitude
Nouwen was a priest and academic for most of his life. He wrote books, did theological research, and in general lived a life that placed intelligence in pretty high esteem. In 1986 he left university life to go and live with the mentally disabled in a L'Arche community in Canada called Daybreak. He would be their pastor for the next ten years.
Part of his first assignment was to work with Adam, one of the most disabled in the community. He was taught to help him with the very basic tasks of bathing, dressing and eating. It scared him. He didn't think he had what it took to help someone with such severe limitations. He was afraid he might not do the job right, or that he would somehow hurt Adam. That was not the case. In fact, he later wrote that the friendship that developed with this very disabled, non-verbal man was one of the most transformative of his life.
In Nouwen's book he wrote, "Speaking about 'Adam's Gift' is not romanticizing an otherwise quite demanding and unrewarding life situation. Adam's gift was a reality of everyday living...Amid all the planning of meals, cleanups, visits to the doctor, shopping, repairs, and countless other things to do, that question of the gifts of Adam, Roy, Michael, Rosie and John (other disabled core members) always remained central. Everyone knew that they would not remain good L'Arche assistants for long if they weren't richly rewarded--by the spiritual gifts of people like Rosie and John. They were discovering that true care is mutual care. If their only reward had been the small salary, their care would soon have become little more than human maintenance."
Once, a pastor friend who taught theology visited him at L'Arche Daybreak. He felt that Nouwen was wasting his time and talent working with Adam.
His friend asked, "Why spend so much time and money on people with severe disabilities while so many capable people can hardly survive? Why should such people be allowed to take time and energy which should be given to solving the real problems humanity is facing?" (A question that some still have, and one that reminds me of Judas objections when Mary used expensive oil to wash Jesus' feet.)
Nouwen didn't feel the need to debate with his friend. He did later write in response to that conversation that the real questions of God are "Can you let Adam lead you into prayer? Can you believe that I am in deep communion with Adam and that his life is a prayer? Can you let Adam be a living prayer at your table? Can you see my face in the face of Adam?"
At the end of the book, Nouwen writes, "From a worldly perspective telling about our relationship makes no sense at all. But I, Henri, Adam's friend, decided to write it down. I didn't embellish it. I didn't soften or sweeten it. I tried to write it as simply and directly as I could. I am a witness of Adam's truth."
It's a truth that many parents of profoundly disabled children know, but find difficult to put into words without sounding sentimental. We're not superhuman. Our kids aren't angels. They're human beings made in the image of God, and we can recognize their gifts and offer ours in return if we choose to.
Monday, April 18, 2011
Recovery Time
Over the years, the main physical trouble that Daniel has dealt with is coughing and congestion that linger on. When I hear the first sniffles, I know that we'll soon be getting the nebulizer out to tackle his cough. He's never been hospitalized because of it, and it's never progressed to pneumonia. The trajectory it follows is familiar territory.
Friday night the sneezing from the night before turned into a croupy cough. We used our typical arsenal of Zycam, nasal saline spray, Vicks rub, Guaifenesin and a little castor oil tummy rub thrown in for good measure (thank you, Edgar Cayce). Unfortunately, this time he experienced fevers and cough induced vomiting of a worrisome color. A trip to the ER later, we have confirmation that there's blood coming from somewhere in his GI tract. Now we've added Zantac and an antibiotic to the mix, and are set up for a consultation with the specialists.
Through it all, he's a trooper. When he's sick like this, I spend a lot of time holding him and taking him for walks. The beach stroller soothes him, and it's especially nice outside right now. This morning during our walk he started laughing really big belly laughs over something. I'm not sure what tickled him, but it was good to see him so happy.
For awhile before this, I had spent some time in my mind worrying about stuff that needs to be done around the house. So many times my hands are tied when Daniel is having one of these episodes. I can look around and see that I need to dust and mop, but I can't get to it. It can frustrate me if I let it. The to-do list grew in my head this morning until he started to laugh. I remembered how insignificant my list really is. I will either get to it, or I won't. If I don't, it's really not a big deal.
Days like these help me keep my perspective. When I decide to look around at the spring flowers, smell the honeysuckle in the air, and watch Daniel happily playing with the strap on the side of the stroller, I experience peace. Just being able to take a day off from work to help him get back to normal again is a gift. Why does my mind want to spoil it by making up a list of "shoulds" that need to be done? Well, it didn't win today.
I did manage to get a few Easter decorations out of the garage and do a little dusting. But that's as far as I'm going with my "to-do's" today!
Friday night the sneezing from the night before turned into a croupy cough. We used our typical arsenal of Zycam, nasal saline spray, Vicks rub, Guaifenesin and a little castor oil tummy rub thrown in for good measure (thank you, Edgar Cayce). Unfortunately, this time he experienced fevers and cough induced vomiting of a worrisome color. A trip to the ER later, we have confirmation that there's blood coming from somewhere in his GI tract. Now we've added Zantac and an antibiotic to the mix, and are set up for a consultation with the specialists.
Through it all, he's a trooper. When he's sick like this, I spend a lot of time holding him and taking him for walks. The beach stroller soothes him, and it's especially nice outside right now. This morning during our walk he started laughing really big belly laughs over something. I'm not sure what tickled him, but it was good to see him so happy.
For awhile before this, I had spent some time in my mind worrying about stuff that needs to be done around the house. So many times my hands are tied when Daniel is having one of these episodes. I can look around and see that I need to dust and mop, but I can't get to it. It can frustrate me if I let it. The to-do list grew in my head this morning until he started to laugh. I remembered how insignificant my list really is. I will either get to it, or I won't. If I don't, it's really not a big deal.
Days like these help me keep my perspective. When I decide to look around at the spring flowers, smell the honeysuckle in the air, and watch Daniel happily playing with the strap on the side of the stroller, I experience peace. Just being able to take a day off from work to help him get back to normal again is a gift. Why does my mind want to spoil it by making up a list of "shoulds" that need to be done? Well, it didn't win today.
I did manage to get a few Easter decorations out of the garage and do a little dusting. But that's as far as I'm going with my "to-do's" today!
Saturday, April 9, 2011
Bring on the buffet!
Yesterday I got a call from Daniel's school nurse. He started middle school this year, so everyone is still getting to know him. She asked if it were ok for him to have "table food". Sounds like a strange question to ask about a twelve year old, but Daniel has had an aversion to solid food for years. He mostly likes to drink his meals! I send in things like sweet potatoes, oatmeal, stuff that the occupational therapist helps him eat. Some days are better than others, but he's always done much better for the school staff than me.
I said, sure, absolutely! If he's willing to try it, he can have it. She was pretty excited to tell me that he polished off an entire school lunch (he must've been REALLY hungry, lol). I started envisioning a weekend of real food for my guy-- baked potatoes and steak! Hell, whatever he wants! It's only Saturday morning, so we have yet to see how far he'll take this, or if it was just a fluke.
This little variation in Daniel's behavior made me philosophical. We don't see a lot of changes year to year. Growth is slow. It's always been so. We're old hats at this twelve years down the line. I don't burn out (I have days of frustration, but that's not the same to me as full-fledged burn-out), and I don't think he's often discouraged either. Why is that?
Something that helped me early on is a little book called 'Changed By a Child' by Barbara Gill. Here's a passage that is always with me, imprinted on my heart.
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 turn ourselves over to our child and what we are doing. We know the intimacy of placing food in another person's mouth; of sitting by a child's side in the dark, singing, so that he can sleep. 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. Our tasks are our opportunities. (Changed by a Child p.71)
I'm sure that from the outside looking in, it's hard to imagine how we deal with the day to day sameness that slow development means. Gill probably helped me out there, too.
Living with our children every day, seeing them "conduct themselves naturally in their own spontaneous way," we see how they are people according to the capacities they have. We see their souls. Let us hold, always, this picture of our child in her completeness, even-especially-in the face of those who see her as decomposed, a collection of deficits. (Changed by a Child, p. 33)
Yeah, it might seem strange to celebrate a twelve year old boy deciding it's time to move from liquids to solids. For us, it's just a natural part of this ride we're on.
I said, sure, absolutely! If he's willing to try it, he can have it. She was pretty excited to tell me that he polished off an entire school lunch (he must've been REALLY hungry, lol). I started envisioning a weekend of real food for my guy-- baked potatoes and steak! Hell, whatever he wants! It's only Saturday morning, so we have yet to see how far he'll take this, or if it was just a fluke.
This little variation in Daniel's behavior made me philosophical. We don't see a lot of changes year to year. Growth is slow. It's always been so. We're old hats at this twelve years down the line. I don't burn out (I have days of frustration, but that's not the same to me as full-fledged burn-out), and I don't think he's often discouraged either. Why is that?
Something that helped me early on is a little book called 'Changed By a Child' by Barbara Gill. Here's a passage that is always with me, imprinted on my heart.
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 turn ourselves over to our child and what we are doing. We know the intimacy of placing food in another person's mouth; of sitting by a child's side in the dark, singing, so that he can sleep. 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. Our tasks are our opportunities. (Changed by a Child p.71)
Enjoying a sip of water from a straw.
Ignoring oatmeal in preference to his hand.
Then it's on to ya-ya-ing hand to mouth, and playing with some favorite toys.
I'm sure that from the outside looking in, it's hard to imagine how we deal with the day to day sameness that slow development means. Gill probably helped me out there, too.
Living with our children every day, seeing them "conduct themselves naturally in their own spontaneous way," we see how they are people according to the capacities they have. We see their souls. Let us hold, always, this picture of our child in her completeness, even-especially-in the face of those who see her as decomposed, a collection of deficits. (Changed by a Child, p. 33)
Yeah, it might seem strange to celebrate a twelve year old boy deciding it's time to move from liquids to solids. For us, it's just a natural part of this ride we're on.
Sunday, April 3, 2011
Back to School
Today was our last day of spring break. We had ten days off and managed to divide it pretty evenly between time alone and time together. Melody and I shopped and had lunch on the first day of break. The following week Daniel took a trip downtown with me to pick out a new walker.
All of us attended a local acoustic night and heard some good music. Daniel yelled out his appreciation during one woman's rendition of 'Black Velvet.' He has good musical taste! We met a teenager there with similar issues as Daniel. We introduced ourselves as soon as we spotted her wheelchair stroller, and spent a lot of time talking.
We managed to add some getaways to the mix, too. Melody flew to Virginia Beach to spend time with her cousins and their new baby girl and two boys, and Rich and I drove to Cedar Key for two nights. Daniel had his own private caregiver here to take him places without me, including the park and the mall. That's very unusual for him. The report was that he had a good time until the second morning when his mood started to turn a little fussy. When we pulled up in the drive he was outside in his beach stroller. I rolled down the window, called out to him, and he smiled. He was definitely happy I was home, and gave me the kisses to prove it.
The balance of it all was really nice. We ended it today with church, followed by some long walks and time in the shade. Tomorrow the kids will be back in school and I'll be back at my job as a school nurse, dreaming of lazy mornings and beautiful sunsets on the Gulf of Mexico.
Now I'm counting down the days until Easter!
All of us attended a local acoustic night and heard some good music. Daniel yelled out his appreciation during one woman's rendition of 'Black Velvet.' He has good musical taste! We met a teenager there with similar issues as Daniel. We introduced ourselves as soon as we spotted her wheelchair stroller, and spent a lot of time talking.
We managed to add some getaways to the mix, too. Melody flew to Virginia Beach to spend time with her cousins and their new baby girl and two boys, and Rich and I drove to Cedar Key for two nights. Daniel had his own private caregiver here to take him places without me, including the park and the mall. That's very unusual for him. The report was that he had a good time until the second morning when his mood started to turn a little fussy. When we pulled up in the drive he was outside in his beach stroller. I rolled down the window, called out to him, and he smiled. He was definitely happy I was home, and gave me the kisses to prove it.
The balance of it all was really nice. We ended it today with church, followed by some long walks and time in the shade. Tomorrow the kids will be back in school and I'll be back at my job as a school nurse, dreaming of lazy mornings and beautiful sunsets on the Gulf of Mexico.
Now I'm counting down the days until Easter!
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