The Countdown Begins....
Posted Sep 3, 2010 9:21pm
September 7th is bearing down on us all too quickly, and the countdown begins tonight, really. Today was Phil's last day of school for a while, and he had fun. Tonight he starts some meds to make sure his innards keep on working in spite of an Ensure diet :-P! Tonight we are just chillin' at home, and tomorrow we hope to make a trip up to the Sheboygan county fair. Sunday is Phil's Totally Awesome Pre-surgical party, which is more or less an open house! Anyone is welcome to stop by and say hi, have a burger or a brat, play some games, have a few drinks, enjoy the fire pit, and everyone has to sign this awesome little pillow case that our friend Starla made him, so that he can take it to the hospital with him! Monday we shall recover from that, and end the day with a shower using special soap the doc wants him scrubbed down with. Then it's early to rise on Tuesday, (4:00 am...yikes, been a while!) leave at 5 to be at the hospital at 6 for a 7:30 am show-time!
We've tried to have some fun here this summer between appointments, celebrating Phil’s 12th birthday on the 17th. He was surprised by a bunch of legos which we had fun with, but even more fun with the newest addition to the family, a little brindle Pomeranian puppy he named Sparky. This little creature is absolutely amazing, with a few medical issues of his own, but you’d never know it watching him! He sleeps with Phil and rides on his tray. At the tender age of 10 weeks, he already knows “sit”, “stay”, “shake”, “lie down” and “dance”. He’s insanely smart and we are loving every minute of his fluffy presence!
We also took Phil to the tattoo parlor, where he chickened out (just kidding), but enjoyed seeing me get mine worked on! My artist, Spence, then surprised him by inviting us over to his place to swim in his pool, and despite Phil's initial reluctance to get in the water, he had a GREAT time! Last weekend, his oldest brother Travis had him come up to his new place in Fond du Lac, and we both had a wonderful weekend - think I actually got some work done! My mom was able to come down from LaCrosse this week and help me put some dishes in the freezer for the kids while we are gone, and Phil got to visit with his Grandma.
Maybe on some level all of this is a distraction to the main event here, which we are all admittedly scared of. There really is no way to be ready for this. You can be prepared, but never truly ready. We’ve been having good days and bad days in regards to that, all in our own way. There are days when I can be objective about this whole thing, and other days I feel like I’m going to melt like sugar in a bad cup of coffee! So many changes to come, so many variables , such a brutal procedure…I have only the assurance that he is getting the best medical care available, and his surgeon does this for a living! (How, I’m not sure! Most of us balk at the idea of our kids even getting their immunizations…how can you cut on little bodies all day is a mystery to me, but it takes all kinds, and I am glad to have the “best in the business”.)
So, tonight, I will post this and spend some time with my boys – Just Mark and Phil home tonight – and try not to think of the coming days as a descent into the surgical abyss, but that’s getting harder to do. It’s a certain resignation I’m hoping for.This fight against Duchenne is a fixed fight, and the only weapons we have for this battle are faith and love. The fact that you are reading this makes you part of our army, reminding us that nothing can take away the weapons of this warfare. Thank you for following along, and holding Phil in your thoughts, prayers, and the light of Love. We’ll keep you posted from the front!
Blessings….
We've tried to have some fun here this summer between appointments, celebrating Phil’s 12th birthday on the 17th. He was surprised by a bunch of legos which we had fun with, but even more fun with the newest addition to the family, a little brindle Pomeranian puppy he named Sparky. This little creature is absolutely amazing, with a few medical issues of his own, but you’d never know it watching him! He sleeps with Phil and rides on his tray. At the tender age of 10 weeks, he already knows “sit”, “stay”, “shake”, “lie down” and “dance”. He’s insanely smart and we are loving every minute of his fluffy presence!
We also took Phil to the tattoo parlor, where he chickened out (just kidding), but enjoyed seeing me get mine worked on! My artist, Spence, then surprised him by inviting us over to his place to swim in his pool, and despite Phil's initial reluctance to get in the water, he had a GREAT time! Last weekend, his oldest brother Travis had him come up to his new place in Fond du Lac, and we both had a wonderful weekend - think I actually got some work done! My mom was able to come down from LaCrosse this week and help me put some dishes in the freezer for the kids while we are gone, and Phil got to visit with his Grandma.
Maybe on some level all of this is a distraction to the main event here, which we are all admittedly scared of. There really is no way to be ready for this. You can be prepared, but never truly ready. We’ve been having good days and bad days in regards to that, all in our own way. There are days when I can be objective about this whole thing, and other days I feel like I’m going to melt like sugar in a bad cup of coffee! So many changes to come, so many variables , such a brutal procedure…I have only the assurance that he is getting the best medical care available, and his surgeon does this for a living! (How, I’m not sure! Most of us balk at the idea of our kids even getting their immunizations…how can you cut on little bodies all day is a mystery to me, but it takes all kinds, and I am glad to have the “best in the business”.)
So, tonight, I will post this and spend some time with my boys – Just Mark and Phil home tonight – and try not to think of the coming days as a descent into the surgical abyss, but that’s getting harder to do. It’s a certain resignation I’m hoping for.This fight against Duchenne is a fixed fight, and the only weapons we have for this battle are faith and love. The fact that you are reading this makes you part of our army, reminding us that nothing can take away the weapons of this warfare. Thank you for following along, and holding Phil in your thoughts, prayers, and the light of Love. We’ll keep you posted from the front!
Blessings….
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