For the most part we are doing better this week. The weekend brought many e-mails, phone calls, and private messages with ideas or just words of encouragement. Here are some random thoughts since my last entry...
Many, many thank yous to anyone and everyone who tried to get in touch with us. I promise you that all of them were read including the one thoughtless and selfish comment that I should've completely ignored. If I didn't personally say thank you consider this one big hug in appreciation.
The act of begging for help is an emotionally charged action that I would not wish upon anyone. If one is at the point of needing to ask for help you can bet that individual is already experiencing the absolute low of lows every way, shape, or form. In all honesty it was an exhausting weekend. Of course the spectrum of emotions was limited to those less desirable by most.
Over a phone call with a dear friend I was able to exactly describe the panic that surfaced recently. We have lived for over a decade now trying to take things one day at a time, sometimes even just an hour at a time before even considering the next. At some point early in Ben's life we were told that he would be lucky to survive to the age of ten. Now that there is so much more information available about Pallister-Killian Syndrome we know that truly isn't the case. The fact that Ben not only survived those ten years but is for the most part thriving, it's dawned on us that we are ill prepared in caring for Ben as we near his teenage and adult years. Of course developing on-going back troubles is a constant reminder that our son isn't so different form others after all.
There are some specific individuals that we REALLY want to thank who are currently going to bat for us and pulling strings, weight, and perhaps even the proverbial rabbit out of the hat. I hope to report soon on some positive things that might occur before the end of September. In the mean time Cher & Rick Austin, Billy & Lynn Dalton, Paul & Cheryl Swenson, SC State Senator Tom Davis and his staff - you all rock our world! You each deserve a big wet drooly kiss from Ben.
One issue that we are addressing and hope to raise awareness within our state is the limitation on Medicaid provisions to help families adapt their homes for a lifelong stay. The difference in how Ben is medically provided for versus home/transportation needs is like night and day. That fact was acknowledged by some folks within two state agencies responsible for the care of citizens like Ben via correspondence shared with us the past two days. The surprising discovery is how sympathetic these folks are about our plight! It was refreshing to see how much they really want to help but are limited due to very outdated information.
A suggestion from many of you was to apply for an Extreme Home Makeover via the television program. Joan actually looked into that a few years ago only to find out that there was a restriction that the home couldn't be on a major thoroughfare. We happen to live on a four-lane road with a median that is a main artery from Interstate 85 into the east side of Greenville, SC. Joan is actually going to revisit the website to see if that has changed. Regardless she plans on taking her Labor Day holiday to file a new application hoping they might make an exception.
That's pretty much it in a couple of bullets. I'm preparing for my trip to Savannah, Georgia this weekend by painting and packing. Ben started back to school today so it was rather lonely around here! I do miss that kid even if he's away just for a few hours. If anyone in the upstate of South Carolina have any friends with a pub or bar, my acoustic playing partner and I are ready to book some gigs. Meryl Hammet Cook and I have been practicing since the spring - we finally have enough material to do three sets easily (we're closing in on another set as well). Keep checking back for more news, hopefully the good variety.
- Many, many thank yous to anyone and everyone who tried to get in touch with us. I promise you that all of them were read including the one thoughtless and selfish comment that I should've completely ignored. If I didn't personally say thank you consider this one big hug in appreciation.
- The act of begging for help is an emotionally charged action that I would not wish upon anyone. If one is at the point of needing to ask for help you can bet that individual is already experiencing the absolute low of lows every way, shape, or form. In all honesty it was an exhausting weekend. Of course the spectrum of emotions was limited to those less desirable by most.
- Over a phone call with a dear friend I was able to exactly describe the panic that surfaced recently. We have lived for over a decade now trying to take things one day at a time, sometimes even just an hour at a time before even considering the next. At some point early in Ben's life we were told that he would be lucky to survive to the age of ten. Now that there is so much more information available about Pallister-Killian Syndrome we know that truly isn't the case. The fact that Ben not only survived those ten years but is for the most part thriving, it's dawned on us that we are ill prepared in caring for Ben as we near his teenage and adult years. Of course developing on-going back troubles is a constant reminder that our son isn't so different form others after all.
- There are some specific individuals that we REALLY want to thank who are currently going to bat for us and pulling strings, weight, and perhaps even the proverbial rabbit out of the hat. I hope to report soon on some positive things that might occur before the end of September. In the mean time Cher & Rick Austin, Billy & Lynn Dalton, Paul & Cheryl Swenson, SC State Senator Tom Davis and his staff - you all rock our world! You each deserve a big wet drooly kiss from Ben.
- One issue that we are addressing and hope to raise awareness within our state is the limitation on Medicaid provisions to help families adapt their homes for a lifelong stay. The difference in how Ben is medically provided for versus home/transportation needs is like night and day. That fact was acknowledged by some folks within two state agencies responsible for the care of citizens like Ben via correspondence shared with us the past two days. The surprising discovery is how sympathetic these folks are about our plight! It was refreshing to see how much they really want to help but are limited due to very outdated information.
- A suggestion from many of you was to apply for an Extreme Home Makeover via the television program. Joan actually looked into that a few years ago only to find out that there was a restriction that the home couldn't be on a major thoroughfare. We happen to live on a four-lane road with a median that is a main artery from Interstate 85 into the east side of Greenville, SC. Joan is actually going to revisit the website to see if that has changed. Regardless she plans on taking her Labor Day holiday to file a new application hoping they might make an exception.
That's pretty much it in a couple of bullets. I'm preparing for my trip to Savannah, Georgia this weekend by painting and packing. Ben started back to school today so it was rather lonely around here! I do miss that kid even if he's away just for a few hours. If anyone in the upstate of South Carolina have any friends with a pub or bar, my acoustic playing partner and I are ready to book some gigs. Meryl Hammet Cook and I have been practicing since the spring - we finally have enough material to do three sets easily (we're closing in on another set as well). Keep checking back for more news, hopefully the good variety.