Took Mitchell to see his ENT doctor.
Brother came with us.
Wait was long.
Mitchell cried.
Asked Luke a few times if he needed to use the potty.
The answer always no.
Finally, Mitchell's name was called.
We headed to the examination room.
Questions were answered.
Luke said he had to go.
Mitchell cried.
Nurse asking questions said we couldn't.
We'd lose our place in line.
I said, "He kind of has to go."
Again, "He can't."
Mom took him and Mitchell to find a bathroom.
Sorry lady, he went.
We kept the door open.
Mitchell's stroller didn't fit.
Wheelchair accessibility????
Mitchell cried.
Doctor came in.
"What are you seeing me for?"
I explain.
Offer that Mitchell hasn't been drinking too well.
Doctor says, "It says here he should only be having purees."
"No liquids since results of last year's FEES study & video swallow."
Huh?
I wasn't told.
Luke impatient in small room.
Not tall enough to see the Where's Waldo poster.
Mitchell not crying!
"I believe he aspirates intermittently."
"Doesn't have recurring respiratory issues."
"Pneumonia only twice in his lifetime."
Wait a minute.
"Maybe you should get another Aerodigestive Team consult."
"I didn't know we had one."
"Says you requested one."
I did. Never saw results.
Doc tells Luke to get down from examination chair.
Errr.
"Actually, doesn't say they reviewed your son after all."
"Report says eating purees is fine."
"Kind of vague on whether liquids is ok."
Move to other room.
Mitchell's ears examined.
Mitchell cries.
A lot.
Didn't stop.
Asked, "So tell me again why you are here, I'm a little confused."
Oh boy.
Doc says, "Do you think his aspiration is minor because he's only had two pneumonias?"
"No. I would say it's minor only if you say so."
"I think he should have a repeat video swallow study."
"His throat is red."
Prescription for antibiotic.
Move to another room.
Luke happy again because there is a table.
He draws.
Mitchell cries.
I try to feed Mitchell.
Maybe he's hungry.
Luke and I brainstorm what he wants.
"Maybe he wants to go home sit in the Bumbo while you and I play Army men in my room and set them up on diff'rent parts of my bunk bed so they can hide."
Doc comes back with last hearing test results.
Normal.
Doesn't recommend another test at this time.
Nurse gives us paperwork.
Mitchell cries.
Mitchell holds his breath.
We go outside.
Mitchell stops crying.
Tuesday, June 30, 2009
Sunday, June 28, 2009
Parky's Ark
We were feeling sequestered in our home trying to keep Mitchell at a reasonable temperature, so we opted to head out after church to Winton Woods - a park near where Chris grew up. We outfitted M with the new cooling vest I got him. Essentially you soak it in 2 cups of water 30 minutes before going out. Wring out the excess and it is to keep you cool as your body eventually evaporates the water from the vest. At first I didn't see the science in it, after seeing it thinking, "Couldn't a wet towel or sponge work?" But it did the trick.
We were pleasantly surprised by there being a water park there, called "Parky's Ark". A spare pair of shorts in our bag sufficed as a suit for Luke and he had a delightful day until the area needed to close indefinitely since a bigger kid made a "mess" on one of the sprinkler animals. Oh well, it was time to go anyway!
Friday, June 26, 2009
GI Track
Chris and I saw M’s GI today. Gave him the rundown of the issues. No drinking. Weight loss. Painful eliminations. Inability to regulate temperature. Acid reflux. Had forgotten about intermittent aspiration.
All of this is par for the mito course. We were given frank talk and the recommendation of a feeding tube. We figured that. The doctor said it was inevitable and although hard to believe, would make our lives easier. Mitchell would likely be less fussy with hydration and there would be less worry and frustration around not getting him to eat or drink adequately. Chris went in a little less convinced this decision should be made. For some reason when we listened to the assessment of Mitchell’s situation, we found acceptance and both had peace about it.
We’re to schedule a hospital stay for Mitchell for the procedure sometime mid-late July. He’ll be there 2-3 days during which he’ll be managed by a nutritionist after the surgery and we’ll learn how to use the tube to get the appropriate amount of calories into M. We’ll continue feeding him solids during the day, determining what amount of continuous feeding he’ll tolerate overnight.
Believe me, I am not looking forward to this. I’m worried about keeping it clean, him having to go through this and so much else. More than that, it’s not easy giving up on one more shot at normalcy. But we love this little guy and will move mountains in his best interest.
All of this is par for the mito course. We were given frank talk and the recommendation of a feeding tube. We figured that. The doctor said it was inevitable and although hard to believe, would make our lives easier. Mitchell would likely be less fussy with hydration and there would be less worry and frustration around not getting him to eat or drink adequately. Chris went in a little less convinced this decision should be made. For some reason when we listened to the assessment of Mitchell’s situation, we found acceptance and both had peace about it.
We’re to schedule a hospital stay for Mitchell for the procedure sometime mid-late July. He’ll be there 2-3 days during which he’ll be managed by a nutritionist after the surgery and we’ll learn how to use the tube to get the appropriate amount of calories into M. We’ll continue feeding him solids during the day, determining what amount of continuous feeding he’ll tolerate overnight.
Believe me, I am not looking forward to this. I’m worried about keeping it clean, him having to go through this and so much else. More than that, it’s not easy giving up on one more shot at normalcy. But we love this little guy and will move mountains in his best interest.
Wednesday, June 24, 2009
Good Perspective
Here is a video conveys the true purpose of life. I ran across it a couple days ago amidst conflicted feelings around our life and the complexities in it that Mitchell creates. I know there is a greater purpose for our lives because of him. I know I should reach a place of joy in serving him. I know that many are touched by him and that all of our lives' purpose should be to glorify God. Yet there are moments when "I" and "me" creep in and the feeling of freedom is the pursuit. There is the day to day disappointment that causes questions. It's awfully confusing at times.
I actually took notes when watching this video - so much wisdom shared to which I could relate. I have a feeling I'll return to watch it when I need to re-point my spirit to what really matters.
http://deathisnotdying.com/
I actually took notes when watching this video - so much wisdom shared to which I could relate. I have a feeling I'll return to watch it when I need to re-point my spirit to what really matters.
http://deathisnotdying.com/
Awaiting GI
Mitchell is still not doing well in the heat and now he's got a virus on top of it all. I decided to take him to his pediatrician’s office last night just so we weren’t missing an ear infection or strep or something.
I broke down crying which I don’t usually do. She said it’s because I instinctively know something has to change. Working harder to “fix” Mitchell isn’t working and our efforts are wearing us down. He does have a red throat, but she thinks a small virus is just the icing on the situation. He’s lost weight and she has now reclassified him as “failure to thrive”. He is not able to sustain growth on the pureed foods we can get him to eat. Almost a month ago now, he's refused to drink from a bottle. Syringing liquids into his mouth isn't helping to keep up his calories, although he has not been dehydrated.
She gave us 2 options. We could go straight to Children’s hospital from her office or have them call the GI Mitchell regularly sees in the morning. If we couldn't get in with him or a colleague, we would take him to Children’s this afternoon or evening only putting it off for one day. I called Chris and we decided on the later. We see a wonderful GI and coincidentally I had called his office today and left a message for his nurse about the concerns.
I have a feeling a feeding tube is in his (our) future. I am not happy about that, but feel pacified a bit with an action at hand.
Sometimes it's strange to share things with so many people this way. I guess one plus is that it provides friends and family specific information on which to pray. Many of you ask for that. And this one is a biggie. Please pray for Mitchie to drink, eat, sleep and feel healthy, and especially calm his GI tract.
Will keep all updated.
I broke down crying which I don’t usually do. She said it’s because I instinctively know something has to change. Working harder to “fix” Mitchell isn’t working and our efforts are wearing us down. He does have a red throat, but she thinks a small virus is just the icing on the situation. He’s lost weight and she has now reclassified him as “failure to thrive”. He is not able to sustain growth on the pureed foods we can get him to eat. Almost a month ago now, he's refused to drink from a bottle. Syringing liquids into his mouth isn't helping to keep up his calories, although he has not been dehydrated.
She gave us 2 options. We could go straight to Children’s hospital from her office or have them call the GI Mitchell regularly sees in the morning. If we couldn't get in with him or a colleague, we would take him to Children’s this afternoon or evening only putting it off for one day. I called Chris and we decided on the later. We see a wonderful GI and coincidentally I had called his office today and left a message for his nurse about the concerns.
I have a feeling a feeding tube is in his (our) future. I am not happy about that, but feel pacified a bit with an action at hand.
Sometimes it's strange to share things with so many people this way. I guess one plus is that it provides friends and family specific information on which to pray. Many of you ask for that. And this one is a biggie. Please pray for Mitchie to drink, eat, sleep and feel healthy, and especially calm his GI tract.
Will keep all updated.
Sunday, June 21, 2009
Celebrating Father's Day
Today we are celebrating Chris. He is a terrific dad and the best husband. He awoke to hugs and kisses from Luke, a new shirt and tie and a rolling briefcase because with his new job he splits his time between 2 offices. On behalf of Mitchie, he also received this poem:
"I Do Talk To You"
I know you can't hear me....but I do talk to you.
And I hear everything you say to me too.
I hear when you laugh when I do something funny.
I hear you yell "Hooray" when I try so hard.
I hear you tell others how you'd never trade me for the world.
Even with all the trials I came with.
I hear you thank God for what a blessing you have been given.
I hear you encourage me when I can almost do it.
I hear you cry, too, when it gets a little harder.
And when you ask God "Why?!" your baby.
And I know you know I understand somehow.
And you know I listen when you talk to me too.
But, I want you to know, Dad...........
I do talk to you.
He loved it. To all the dads out there, happy day especially both Grandpa Bobs!
"I Do Talk To You"
I know you can't hear me....but I do talk to you.
And I hear everything you say to me too.
I hear when you laugh when I do something funny.
I hear you yell "Hooray" when I try so hard.
I hear you tell others how you'd never trade me for the world.
Even with all the trials I came with.
I hear you thank God for what a blessing you have been given.
I hear you encourage me when I can almost do it.
I hear you cry, too, when it gets a little harder.
And when you ask God "Why?!" your baby.
And I know you know I understand somehow.
And you know I listen when you talk to me too.
But, I want you to know, Dad...........
I do talk to you.
He loved it. To all the dads out there, happy day especially both Grandpa Bobs!
Saturday, June 20, 2009
New Therapy School
Let’s see. What has been going on? Mitchell started his new therapy school last week. I hesitated posting about it because I have conflicting thoughts. The center is located at Children’s Hospital. Previously run by the United Cerebral Palsy Foundation, it’s been integrated into the hospital. Mitchie will attend the Early Intervention class one morning a week through the summer. In the Fall, if all goes well, he’ll transition to a drop-off toddler program 2 mornings a week.
The therapists are really good. I can tell the PT really understands how to engage Mitchell. They do a wonderful job addressing equipment concerns and finding ways to plug your family into funding sources. So what’s the problem?
The “cost” for the session is:
· 1 physical therapy
· 1 speech therapy
· 1 occupational therapy
· 1 early intervention visit from the county
· and an out of pocket expense that has not been determined because it’s based on income/ability to pay. (Ballpark $35 - $65 a day.)
Through insurance Mitchell can get 20 of each type of therapy a year. After the limit is reached, we pay the full amount out of pocket. So my concern is to optimize those sessions. If Mitchell went to individual one on one sessions, he’d get almost 3.5 hours of concentrated time. In this class setting, he shares 2 hours of time and may only work directly with someone for 15-20 minutes. There were people who left early from the first session and we got out 20 minutes early that only added to my frustration.
I was getting kind of spun up about the inequity of this. Somewhere along the way I decided to submit to the authority of those running the program and just see how it goes. We can opt out of Pearlman in the Fall if desired.
And so it goes I was not at session 2. Mitchell spent time in a stander in front of a computer and everyone got excited about how he seemed to see the screen and initiate pressing a big button to restart music and animation. That sounds like good stuff.
I hope I don't sound negative. Just being the proverbial mama bear for my sweet angel.
The therapists are really good. I can tell the PT really understands how to engage Mitchell. They do a wonderful job addressing equipment concerns and finding ways to plug your family into funding sources. So what’s the problem?
The “cost” for the session is:
· 1 physical therapy
· 1 speech therapy
· 1 occupational therapy
· 1 early intervention visit from the county
· and an out of pocket expense that has not been determined because it’s based on income/ability to pay. (Ballpark $35 - $65 a day.)
Through insurance Mitchell can get 20 of each type of therapy a year. After the limit is reached, we pay the full amount out of pocket. So my concern is to optimize those sessions. If Mitchell went to individual one on one sessions, he’d get almost 3.5 hours of concentrated time. In this class setting, he shares 2 hours of time and may only work directly with someone for 15-20 minutes. There were people who left early from the first session and we got out 20 minutes early that only added to my frustration.
I was getting kind of spun up about the inequity of this. Somewhere along the way I decided to submit to the authority of those running the program and just see how it goes. We can opt out of Pearlman in the Fall if desired.
And so it goes I was not at session 2. Mitchell spent time in a stander in front of a computer and everyone got excited about how he seemed to see the screen and initiate pressing a big button to restart music and animation. That sounds like good stuff.
I hope I don't sound negative. Just being the proverbial mama bear for my sweet angel.
Sunday, June 14, 2009
Mito Fitting Mitchie
It seems that with summer heat, Mitchell seems to be fitting his probable diagnosis of Mitochondrial Disorder more and more. Most recently afternoons in our home have been difficult with consecutive breathholding episodes. Mitchell wakes up from his nap extremely irritable, doesn’t take a lot of liquids and seems to have random fevers. You pick him up sometimes and he feels fine, only to feel his back which is on fire. This is consistent with something called Dysautonomia (see below) that affects many people with this disease. We plan on moving a crib to the first floor for him to nap in during the summer as our upstairs is always about 10 degrees warmer than the 1st floor. We've also put a list together of next steps we need to take for Mitchell. One thing we'd like to do is take him to a mito center - there is one at the Cleveland Clinic which is relatively close.
From the United Mitochondrial Foundation’s website:
Q: Could you please provide some information about dysautonomia?
A: In regards to dysautonomia - some mito patients seem to have several symptoms where dysautonomia has been invoked as a possible etiology - but not proven by autonomic testing. The symptom that might be most linked to dysautonomia would be dysmotility* since the gut is controlled by the autonomic nervous system. The dilemma with this explanation is that the gut also has its own internal nervous system and some of the motility issues may be due to patches of abnormal motility due to a true cellular energy deficiency. The explanation for cardiac arrhythmias may be similar - not due to abnormal signals from autonomic controls in the brain stem but rather aberrant electrical generation/conduction in energy-poor areas. Other symptoms that have not been explained include:1) Sensitivity to heat in that they 'wilt' in hot weather -> I do not think we know if there is an inability to regulate body temperature or sweat. Dehydration may play a role in symptom exacerbation. 2) Blue lips/extremities -> typically not causing discomfort. I have not seen this but have had parents report it. There are biopsy proven reports of neuropathy in mito patients - but I do not know if this would explain episodic color changes in the patients (especially with rapid resolution of the symptom).3) Postural tachycardia or orthostatic/positional hypotension -> this is a common complaint in many individuals (some with abnormal autonomic testing on the tilt-table) - not just mitochondrial patients and we do not know if this is more common in DNA or biopsy proven mito patients.
Answered by: Sumit Parikh, MD
*Dysmotility syndrome: A vague, descriptive term used to describe diseases of the muscles of the gastrointestinal tract (esophagus, stomach, small and large intestines) in which the muscles do not work normally (hence the term dysmotility).
From the United Mitochondrial Foundation’s website:
Q: Could you please provide some information about dysautonomia?
A: In regards to dysautonomia - some mito patients seem to have several symptoms where dysautonomia has been invoked as a possible etiology - but not proven by autonomic testing. The symptom that might be most linked to dysautonomia would be dysmotility* since the gut is controlled by the autonomic nervous system. The dilemma with this explanation is that the gut also has its own internal nervous system and some of the motility issues may be due to patches of abnormal motility due to a true cellular energy deficiency. The explanation for cardiac arrhythmias may be similar - not due to abnormal signals from autonomic controls in the brain stem but rather aberrant electrical generation/conduction in energy-poor areas. Other symptoms that have not been explained include:1) Sensitivity to heat in that they 'wilt' in hot weather -> I do not think we know if there is an inability to regulate body temperature or sweat. Dehydration may play a role in symptom exacerbation. 2) Blue lips/extremities -> typically not causing discomfort. I have not seen this but have had parents report it. There are biopsy proven reports of neuropathy in mito patients - but I do not know if this would explain episodic color changes in the patients (especially with rapid resolution of the symptom).3) Postural tachycardia or orthostatic/positional hypotension -> this is a common complaint in many individuals (some with abnormal autonomic testing on the tilt-table) - not just mitochondrial patients and we do not know if this is more common in DNA or biopsy proven mito patients.
Answered by: Sumit Parikh, MD
*Dysmotility syndrome: A vague, descriptive term used to describe diseases of the muscles of the gastrointestinal tract (esophagus, stomach, small and large intestines) in which the muscles do not work normally (hence the term dysmotility).
Wednesday, June 10, 2009
Inchstones
I was talking to someone yesterday about Mitchell. He commented, "I can't imagine how hard emotionally this is for you. What will you do when he reaches his potential and plateaus?"
I replied, "You know, I think he has."
He scoffed, "You're kidding. I've seen so much change in just the last 2 months." He referenced the gait trainer and some other things.
Hmmm. Have I stopped looking. Stopped hoping. Accepted?
Chris just commented that what we needed was a "milestone".
A friend sent this poem to me yesterday too. Reminded me we need to stay the course and appreciate the "inchstones."
Staying the Course By BJ Gallagher
Our journey of life is about progress, not perfection.
It's not about doing one thing100% better -
it's a matter of doing 100 things, 1% better each day.
Progress is evolutionary not revolutionary,
and most days we measure our progress in inches, not miles.
What matters most is showing up for your life whether you feel like it or not.
Ask yourself, "What two or three little things can I do today that would move me forward?"
You'll be amazed at how much distance you can cover by taking it in increments.
The little things add up; the inches turn to miles;
and we string together our efforts like so many pearls.
Before long, look what you have - a whole strand!
I replied, "You know, I think he has."
He scoffed, "You're kidding. I've seen so much change in just the last 2 months." He referenced the gait trainer and some other things.
Hmmm. Have I stopped looking. Stopped hoping. Accepted?
Chris just commented that what we needed was a "milestone".
A friend sent this poem to me yesterday too. Reminded me we need to stay the course and appreciate the "inchstones."
Staying the Course By BJ Gallagher
Our journey of life is about progress, not perfection.
It's not about doing one thing100% better -
it's a matter of doing 100 things, 1% better each day.
Progress is evolutionary not revolutionary,
and most days we measure our progress in inches, not miles.
What matters most is showing up for your life whether you feel like it or not.
Ask yourself, "What two or three little things can I do today that would move me forward?"
You'll be amazed at how much distance you can cover by taking it in increments.
The little things add up; the inches turn to miles;
and we string together our efforts like so many pearls.
Before long, look what you have - a whole strand!
Tuesday, June 9, 2009
Sites I'm Visiting
Here are some sites I've been hitting:
www.etsy.com : I haven't bought anything yet, but I find myself checking out this site sometimes at night for a quick shopping fix of artistic, handmade creations. It's like going to a virtual art fair and the prices aren't that bad. I especially like to "pounce" - a site feature that lets you see items from vendors who have recently sold something.
www.paperbackswap.com : A new friend turned me onto this site. I feel like it has helped me reprioritize reading for pleasure or self-development. I've posted about 15 books over the past month and have had 6 requested. That seems like a lot to me considering the site has 3.5 million books available at any given time. Each time one of my books is received by the requestor, I get a credit for a book I want to have sent to me.
www.hopefulparents.org: I visit other parents of special needs kids' blogs, but this one consolidates points of views. Contributors are assigned a day of the month on which they are to post so content is always new. It's helpful to understand reflections and perspective of others in your own situation. Reading the writings also provides an opportunity to recognize what you do have in life.
http://www.hostessblog.com/ : I like planning events and this is a very girly site that offers creative inspiration. I can't say I've ever done anything suggested, but I love to review the presentation and idea-starters.
www.etsy.com : I haven't bought anything yet, but I find myself checking out this site sometimes at night for a quick shopping fix of artistic, handmade creations. It's like going to a virtual art fair and the prices aren't that bad. I especially like to "pounce" - a site feature that lets you see items from vendors who have recently sold something.
www.paperbackswap.com : A new friend turned me onto this site. I feel like it has helped me reprioritize reading for pleasure or self-development. I've posted about 15 books over the past month and have had 6 requested. That seems like a lot to me considering the site has 3.5 million books available at any given time. Each time one of my books is received by the requestor, I get a credit for a book I want to have sent to me.
www.hopefulparents.org: I visit other parents of special needs kids' blogs, but this one consolidates points of views. Contributors are assigned a day of the month on which they are to post so content is always new. It's helpful to understand reflections and perspective of others in your own situation. Reading the writings also provides an opportunity to recognize what you do have in life.
http://www.hostessblog.com/ : I like planning events and this is a very girly site that offers creative inspiration. I can't say I've ever done anything suggested, but I love to review the presentation and idea-starters.
Friday, June 5, 2009
Mitchell went to his 2 yr check up with his primary pediatrician this week. Yes, slightly behind schedule. She recommended we revisit ENT as we’ve only partially had his hearing checked. She’s also concerned about his lack of growth. His height and weight have not changed for some time and he’s now well below the growth chart whereas he used to hover between the 5 – 10 percentiles. We’re to take Mitchell back in 4 months to recheck his measurements.
The doc also encouraged us to look into vaccinations. Mitchell’s only current through 4 months. Since all the doctors he sees haven’t really been very specific on his neurological condition, we have opted out of the vaccinations since then. Pediatricians tend to be the most concerned about vaccinations because they’ve started seeing more whooping cough, measles and even polio cases. A pediatrician we saw one time tried a fear tactic saying if Mitchell didn’t get a specific immunization, he could develop an illness rendering him impotent. I kindly explained, he’s non verbal and immobile – at this point the risk of impotence isn’t our biggest concern. Of course we don’t want him to be sick, but you get the point.
Our regular pediatrician gave us the priority of vaccines she suggests understanding we would want to stay away from the MMR that has had the most controversy. I had read something about mitochondrial disorders being somehow linked to autism, although not exactly “on the spectrum”. I feel as with other things, the research is now delegated to me rather than being given guidance from a professional that takes into account all of Mitchell’s considerations.
What do you think about vaccinations?
The doc also encouraged us to look into vaccinations. Mitchell’s only current through 4 months. Since all the doctors he sees haven’t really been very specific on his neurological condition, we have opted out of the vaccinations since then. Pediatricians tend to be the most concerned about vaccinations because they’ve started seeing more whooping cough, measles and even polio cases. A pediatrician we saw one time tried a fear tactic saying if Mitchell didn’t get a specific immunization, he could develop an illness rendering him impotent. I kindly explained, he’s non verbal and immobile – at this point the risk of impotence isn’t our biggest concern. Of course we don’t want him to be sick, but you get the point.
Our regular pediatrician gave us the priority of vaccines she suggests understanding we would want to stay away from the MMR that has had the most controversy. I had read something about mitochondrial disorders being somehow linked to autism, although not exactly “on the spectrum”. I feel as with other things, the research is now delegated to me rather than being given guidance from a professional that takes into account all of Mitchell’s considerations.
What do you think about vaccinations?
Thursday, June 4, 2009
Incredible Week
One of the rules I have for this blog is that I don’t discuss my company (thought it should be known I’m fortunate to love my job and my company.) That said, my company provided the reason for Chris and I to take a well-deserved (if I do say so myself) break.
This past week, I attended a conference in Carmel, California and Chris went with me. We left early and spent 2 days in San Francisco and a day in the Carmel Valley wine tasting and exploring the cozy town. We actually have been in these areas together before when on our honeymoon in 2003 so it was great to revisit some of the same places. We did not expect the weather to be so chilling – Chris at one point broke down and bought the standard issue tourist jacket for $15.99 and bequeathed his fleece vest to me for added warmth. That vest is one way or another in every pic we took!
We did expect this trip to be good for our marriage. Between 2 kids and 2 careers + rental property, there are many times our focus is not on each other. At one of the restaurants we went to on our honeymoon, Grand Café, we sort of recommitted to the ideals we agreed to when first married – like ensuring our marriage is Christ-centered and putting each other first. It was an incredible getaway during which we really appreciated a sense of freedom and relaxation.
Here we are at San Francisco Giants game. A sold out game, we purchased standing room only tickets then found a way mid-game up to the top deck. The specialty sold at AT&T Field was garlic fries. We resisted because while they must have been good, we were intimidated by the intense smell.
Our hotel was tres chic and located in the Union Square area at the foot of the cable car turnaround station. So much was in walking distance. We enjoyed great sushi, Thai food, great shopping and even went to see a movie. Chris picked, so we saw Terminator Salvation. Aside from Madagascar 2 with Luke, that was the first movie we've seen together in 4 years!
An extra special thanks to those on Team Browning who watched our boys when we were away - newcomers Owen and Laura who were amazing, Greg and of course our steady and dedicated Katie!
This past week, I attended a conference in Carmel, California and Chris went with me. We left early and spent 2 days in San Francisco and a day in the Carmel Valley wine tasting and exploring the cozy town. We actually have been in these areas together before when on our honeymoon in 2003 so it was great to revisit some of the same places. We did not expect the weather to be so chilling – Chris at one point broke down and bought the standard issue tourist jacket for $15.99 and bequeathed his fleece vest to me for added warmth. That vest is one way or another in every pic we took!
We did expect this trip to be good for our marriage. Between 2 kids and 2 careers + rental property, there are many times our focus is not on each other. At one of the restaurants we went to on our honeymoon, Grand Café, we sort of recommitted to the ideals we agreed to when first married – like ensuring our marriage is Christ-centered and putting each other first. It was an incredible getaway during which we really appreciated a sense of freedom and relaxation.
Here we are at San Francisco Giants game. A sold out game, we purchased standing room only tickets then found a way mid-game up to the top deck. The specialty sold at AT&T Field was garlic fries. We resisted because while they must have been good, we were intimidated by the intense smell.
Our hotel was tres chic and located in the Union Square area at the foot of the cable car turnaround station. So much was in walking distance. We enjoyed great sushi, Thai food, great shopping and even went to see a movie. Chris picked, so we saw Terminator Salvation. Aside from Madagascar 2 with Luke, that was the first movie we've seen together in 4 years!
An extra special thanks to those on Team Browning who watched our boys when we were away - newcomers Owen and Laura who were amazing, Greg and of course our steady and dedicated Katie!
Wednesday, June 3, 2009
A Day for Tears
by Paul Daughterty, Cincinnati Enquirer Sports Columnist and Dad to Jillian
There is something watering my eye, and a hole where my lip used to be. Lee Ann Womack’s "I Hope You Dance" plays in the background, mood music for what is to come on this boldest and gladdest of days.
"Promise me you’ll give faith a fighting chance. . .”
Jillian Daugherty has always navigated the mysteries of life with both oars in. And now she has docked, temporarily, hopeful and unafraid. Lots of kids will graduate Saturday from high school. It’s a joyous rite of passage, at once an exit and an entrance, a renewed chance at climbing the airy stairs of possibility.
It’s a little different here. The words are the same, but the music is from another corner of heaven. Jillian, the kid with Down Syndrome, is getting her diploma today. The child who couldn’t learn, has. And now she’ll walk from one life to the next, the unique mathematics of her possibility arranging itself anew.I write about athletes for pay. I add myth to their deeds, donating words like “courage”, “dedication” and “passion”. It’s all well and good. Occasionally, it’s actually true. They’re mostly good people with tremendous gifts they don’t take for granted.
They’re not Jillian.When talking with parents of children with disabilities, I advocate just one thought. It is the only road on the map. It can apply to everything and everyone, from sports teams to careers to the dreams you have for your children. It defines, in some way, Jillian’s day today: Expect. Don’t accept. Don’t allow your hope to be tethered to the perceptions of others.
All we’ve done for Jillian is fight for her right to be Jillian. She has done the rest. The proof is Saturday, when the seas part, the world stills and she flips the tassel. I could cover a million star athletes and never find the sand in any of them I see in my daughter. She has worked so hard. She wouldn’t ride a two-wheeled bike. We were told this. She spent four months in training wheels on the long, common driveway out front, pedaling and falling. She spent another month on two wheels, mom or dad holding the back of the seat. It took her five months to learn to ride a bike. Last year, she and I did 20 miles on the Little Miami trail.
She wanted to be on the high school dance team. She spent hours in the basement, dancing, before the tryouts. She danced on the JV team. To some kids, homework is a pain. It’s like eating vegetables or cleaning your room. To Jillian, homework was a nightly Everest. An hour, two hours, occasionally three. Tired, cranky, dogged. “One more,” she’d say, after about the 10th time going over a seven-word spelling test or memorizing some vital fact regarding the geography of Western Europe. One more time. By the end of most sessions, the quizzers were more tired than the quiz-ee.
You learn to persevere when you start every race a lap behind.
You understand that attitude is all, and a good one is all that matters. “Never settle for the path of least resistance. . .” You understand, deep inside, that just because for you spelling two-syllable words is like climbing a tree in roller blades doesn’t mean you won’t enjoy the view from the highest branch, eventually. Jillian has done the projects, written the papers, taken the tests, earned the grades. The fastballs she sees don’t blow up the radar gun; picture Phil Niekro’s heater, not Roger Clemens’. But she has maxed-out her potential. She will be the best she can be. No one who knows her doubts that. How many of us can say that?
The passage of time shivers our knees. Graduation day gets us all, in one jelly spot or another. With Jillian, it’s been a joy, a wonder, a pain, a pleasure, infinite sadness salved by timeless hope. A patience with some, a fight with others, a full-time yearn that, someday, everyone will not simply look at her, but will see her as well. Maybe beginning today. Graduation Day. I’ve had something watering my eyes for days. They’ve been brimming like a full-moon tide. Must be the pollen. Has to be. I’m counting on it to rage Saturday, when nothing matters so much as the 4-foot-10, 100-pound spirit before me. She did it.
“And when you get the choice to sit it out or dance/“I hope you dance.”
There is something watering my eye, and a hole where my lip used to be. Lee Ann Womack’s "I Hope You Dance" plays in the background, mood music for what is to come on this boldest and gladdest of days.
"Promise me you’ll give faith a fighting chance. . .”
Jillian Daugherty has always navigated the mysteries of life with both oars in. And now she has docked, temporarily, hopeful and unafraid. Lots of kids will graduate Saturday from high school. It’s a joyous rite of passage, at once an exit and an entrance, a renewed chance at climbing the airy stairs of possibility.
It’s a little different here. The words are the same, but the music is from another corner of heaven. Jillian, the kid with Down Syndrome, is getting her diploma today. The child who couldn’t learn, has. And now she’ll walk from one life to the next, the unique mathematics of her possibility arranging itself anew.I write about athletes for pay. I add myth to their deeds, donating words like “courage”, “dedication” and “passion”. It’s all well and good. Occasionally, it’s actually true. They’re mostly good people with tremendous gifts they don’t take for granted.
They’re not Jillian.When talking with parents of children with disabilities, I advocate just one thought. It is the only road on the map. It can apply to everything and everyone, from sports teams to careers to the dreams you have for your children. It defines, in some way, Jillian’s day today: Expect. Don’t accept. Don’t allow your hope to be tethered to the perceptions of others.
All we’ve done for Jillian is fight for her right to be Jillian. She has done the rest. The proof is Saturday, when the seas part, the world stills and she flips the tassel. I could cover a million star athletes and never find the sand in any of them I see in my daughter. She has worked so hard. She wouldn’t ride a two-wheeled bike. We were told this. She spent four months in training wheels on the long, common driveway out front, pedaling and falling. She spent another month on two wheels, mom or dad holding the back of the seat. It took her five months to learn to ride a bike. Last year, she and I did 20 miles on the Little Miami trail.
She wanted to be on the high school dance team. She spent hours in the basement, dancing, before the tryouts. She danced on the JV team. To some kids, homework is a pain. It’s like eating vegetables or cleaning your room. To Jillian, homework was a nightly Everest. An hour, two hours, occasionally three. Tired, cranky, dogged. “One more,” she’d say, after about the 10th time going over a seven-word spelling test or memorizing some vital fact regarding the geography of Western Europe. One more time. By the end of most sessions, the quizzers were more tired than the quiz-ee.
You learn to persevere when you start every race a lap behind.
You understand that attitude is all, and a good one is all that matters. “Never settle for the path of least resistance. . .” You understand, deep inside, that just because for you spelling two-syllable words is like climbing a tree in roller blades doesn’t mean you won’t enjoy the view from the highest branch, eventually. Jillian has done the projects, written the papers, taken the tests, earned the grades. The fastballs she sees don’t blow up the radar gun; picture Phil Niekro’s heater, not Roger Clemens’. But she has maxed-out her potential. She will be the best she can be. No one who knows her doubts that. How many of us can say that?
The passage of time shivers our knees. Graduation day gets us all, in one jelly spot or another. With Jillian, it’s been a joy, a wonder, a pain, a pleasure, infinite sadness salved by timeless hope. A patience with some, a fight with others, a full-time yearn that, someday, everyone will not simply look at her, but will see her as well. Maybe beginning today. Graduation Day. I’ve had something watering my eyes for days. They’ve been brimming like a full-moon tide. Must be the pollen. Has to be. I’m counting on it to rage Saturday, when nothing matters so much as the 4-foot-10, 100-pound spirit before me. She did it.
“And when you get the choice to sit it out or dance/“I hope you dance.”
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