Friday, April 27, 2007
The most recent example being the Virginia Tech shootings. Made you sit back and count your blessings, didn't it? Made you sit back and say, "What the hell am I complaining about?" Made you sit back and look at your friends and family and remember how much you really love them. If not all of the above, I am sure a few similar thoughts went through your head.
Why are we this way? Why do we only cherish what we have when something bad comes along and tries to take it away? Others misfortunes often remind us that it could very easily be us the next time around. If Joe Blow's luck ran out, then ours surely could at any time, right?
I guess these are all rhetorical questions, because I surely do not have the answers. I just know that it is true. It happened to me today. A young boy named Loren died today. I didn't know him. It was a boy my wife learned about through a support site for Infantile Spasms. She sent me an email at work today with the link to his website and I read the most recent entry. It is called "This journey has ended". I read it and my heart sank. So, there I sat wondering what on earth I could complain about, that could match this. Needless to say, nothing could compare.
This child lost his life. These parents lost their son. Can you imagine that?? I can't. The thought of it makes my heart ache. How do you go on? I am not going to insult these parents by trying to imagine I know how they feel. But, it did make me imagine, just for a brief moment, what my life would be like without my own son. I literally instantly got a lump in my throat. I truly can not fathom life without him. It would truly be unbearable.
So, will I continue to complain about less relevant issues? I have no doubt that I will. And the next tragedy, be it someone else's or my own, will bring it all back again. Pretty sad, but unfortunately true.
I love you beyond measure Daniel John-Maxwell Spranger. Please don't ever leave me.
God Bless You, Loren. All of our thoughts and prayers to you and your family.
Thursday, April 26, 2007
It was originally schedule for May 18th but got pulled up to the 5th. YES!!! is my original thought. Then CRAPO! We have to cancel the "dead people" exhibit that Lonnie and I were going to with Aimee and John.
Next we get a phone call......Ronald McDonald House. YES!!! they have room for Daniel and I to stay there. SO no huge hotel bill. YES!!! We have to check in on Sunday by 4 p.m.
After thought: CRAPO!!! how are we going to do that?? let me explain. We go in at noon for Daniel's test. We are there for 24 hours. We are required to stay awake during the 24 hours to "monitor" Daniel and squash the button whenever he has anything that we think is a seizure. So we will be getting out of the hospital, lets say around noon-ish. It then is Sunday afternoon. It takes 2 1/2 hours to get to Grand Rapids. So after the hospital and not sleeping, we have to come home pack up the car with everything that Daniel and I need for the weeks and drive 2 1/2 hours. YES 2 1/2 hours! Let me say that again 2 1 /2 hours! HOW THE HECK ARE WE GOING TO DO THAT!?!
First, I'm taking bets on if Lonnie survives the 24 hour EEG without me hurting him at all. I will be taking bets up until Saturday morning at 9 a.m. LOL
Second, anyone want to take a road trip and drive me and Daniel in my car up to Grand Rapids and have someone else follow and drive you back home?!?!? Let me know, you know the phone #! :)
- We have 11 days until we go to Grand Rapids. So excited about this, yet there is so many things to arrange and get ready. Organize Grand Rapids time and here time.
- Daniel went to his Dietitian on 04/20 (Rebecca Sparks) and since she changed in caloric intake about 2 months ago, he has gained 2 pounds (very good) and grew 3 more inches in his height! (Don't ask where his height is coming from cause neither Lonnie nor I are tall!)
- On Sunday (04/22) when we were outside playing, Daniel appeared to have a seizure, very disheartening. Stomach & heart dropped to my toes.....it had been about 14 months since he had a seizure. Just sucks. Anyways, I immediately sent an email to Dr. Chugani (remember its Sunday) and he responded back within an hour. Damn he's good! So we had to up his morning dosage of Vigabatrin to a whole pill, and are now scheduled for another Video EEG (24 hr)
- Besides the seizure which puts your body out of whack (headaches, tummy aches, drains you) Daniel is still teething. I believe he is cutting his back molars and they are big ones!! This also doesn't help with the seizures.
We have multiple reasons why Daniel could have had a breakthrough seizure.
- He outgrew his dosage because of his weight gain (it hasn't been changed for over a year)
- Teething lowers your threshold for seizures
- He seems to be getting a cold/allergies OR
- The DAMN things just decided to rear their ugly heads again and scare the crap out of us! Reminding us that Daniel will never be safe from this horrible "monster".
Also since our last post....because Daniel will be getting the EEG with all the electrodes cemented to his head again in the very near future we had to cut his hair. So here is a post of what he looked like before and after. WOW! Just remember it grows back quickly, and you woudn't want to have to try to get all that cement out of those curls!
Saturday, April 21, 2007
We would like to thank everyone that came to spend their time and hard earned money. Again we are always amazed to see how people open up their hearts to someone that they hardly know.
Lonnie and I didn't have to do any of the set up or organization on this fundraiser and we were pleasantly surprised by all the wonderful prizes that Nicole Bacha was able to get for the event. Nicole, her family and Lonnie's Brother Marty did an outstanding job organizing everything and everyone for the event, despite us bugging the crap out of them constantly inquiring on how it was going! Sorry! :)
There were also many friends and family that donated their time and money buying and selling tickets. Thanks to everyone that made this benefit the absolute best it could be! Thanks for helping us help Daniel.
Friday, April 20, 2007
Monday, April 16, 2007
Saturday, April 14, 2007
Friday, April 13, 2007
We've been there and back!! Wow that is a long drive. about 160 miles and a little over 2 hours!
We met with the Program Director, Andrea Benyovszky. She evaluated Daniel, and we have decided that Daniel will be using some of his fundraising money to go for a semester to the Parent and Child Group. We aren't sure which semester we are going to attend. It will either be at the beginning of May or the beginning of September. We also are trying to coordinate it so that we are able to stay at the Ronald McDonald House. But they only allow 6 families from CLC to stay at the house at one time. We are opting for the Ronald House because it is WAY cheaper then getting a hotel for 4 weeks. So Daniel and I will be off to Grand Rapid to live during the week and we'll be home on the weekends, (or maybe we can talk the rest of the family to come visit us there!).
Thursday, April 12, 2007
Uncle Steve is out of the hospital and seems to be doing well. Yeah Uncle Steve.
Cory from Uof M will be bring a feeding chair for Daniel on May 2nd. Hopefully this will help him when eating so that he doesn't aspirate. It should also give him more truck support which should help him to be able to use him arms and feed himself better.
Daniel is doing really good with the therapies lately. He is using his arms better in OT, his feeding is going well (ST) (his chewing and swallowing), and he is doing spectacular in PT. He has tried out a new walker that basically suspends him, its a pretty big contraption but it seems to give him his freedom. He will also be getting his Electro-Stim machine (TENS) next week. These are little electrodes that will be placed on his back. It will send little impluses to his muscles and make them contract every few seconds. This should help strengthen his muscles in his truck which is his weakest part.
Sunday, April 8, 2007
Thursday, April 5, 2007
"I'd like to find a new term for special needs parents, one that doesn't include the hated words "special needs". I have no idea what, though. "Shepherds of the Broken", perhaps.I don't speak for all or even most of my fellow shepherds. But judging from many of the people I've met, both online and in this grand rough world, I know I speak for some. I speak for some of the parents of the broken who don't get divorced and don't give over the care of our broken children to the state or to someone else seemingly more qualified than our clumsy, stupid selves to help our kids. We are shepherds in the storm. We stand, dumb but firm, against the winds, and we endure.Shepherds of the broken engage in acts of compromise, often in ways that are hard to explain and which perhaps don't make sense to the neurotypical world.We find that we stand apart from other parents, that the things that thrill us have a whiff of desperation about them, such as when our broken children achieve things that are both commonplace and yet sometimes seemingly out of reach. When I discovered that Schuyler received a perfect score on her spelling test on Friday, like any other first grade child might, how do I explain how both my joy and a little bit of sadness fed off of the low expectations she's battled in the past, where the very device she uses to take that test was considered to be out of her intellectual reach?And yet, there are fellow shepherds out there who celebrate when their child survives another year, another month. When I write about Schuyler's struggles, so much less terrifying than theirs, they don't necessarily look at me with pure joy, but perhaps with something very gently tainted with contempt. And I don't look at them with sympathy alone, but also fear, and an impulse to step back from their world.The most surprising thing I've discovered about being a shepherd of the broken are the limits of community and empathy amongst fellow shepherds. I've had tense discussions with other parents that have degenerated into "you think YOU have problems", as if our broken children were competing to see who had the most monstrous of monsters. I have discovered over the years and particularly of late how lonely our shepherding lives can be. Standing outside a neurotypical world, we also stand apart from each other. Most of all, we find ourselves standing apart from our spouses and families.Yes, shepherds of the broken live in a world of compromise. The divorce rate among us is higher than the general population, but for a good number of us, splitting up is an unworkable option. We learn to forgive transgressions so long as they are against each other and not our broken children. We learn to accept that our relationships are bound in ways that the unbroken can never completely grasp. We're alone in profound ways, working with the one person in the world who can understand what we're going through and yet also the one person who can't ease our sorrow, steeped as they are within their own. Our fellow, spousal shepherds have their own pain. Locked together in a relationship that becomes mostly, then entirely, about our shepherding duties, we sometimes turn to religion for help, or we try to find time to pretend that we're just like the rest of you, but mostly we turn inwards, to the space that is ours alone. We labor together as partners, as caregivers and educators and advocates, and perhaps eventually that's all we become to each other. And the weirdest part of that is how okay we are with it, because as lonely as that kind of relationship can be, it is that partnership against the monster that we depend on all the time. It's the one thing that we can't do alone.Shepherds of the broken try to build lives like the rest of you. We can't expect you to completely understand how we live and how the rules that govern much of society stopped working for us a long time ago. It's not just our children who stand apart. We shepherds of the broken find ourselves unable to build relationships. Our marriages and families are eaten by our children's monsters and the people we reach for in the unbroken world are unable to reach back.If there is one thing that Julie and I and countless other parents have found about having a broken child, it is that in the end, it can be the loneliest life in the world. It can be like an emotional limbo.And yet.Yet through it all, Schuyler stands at the center, and when every other relationship falters, her love is the light that guides me and the warmth that sustains my life. She is like a star, from whose gravitational pull I can never escape but whose very existence gives life and purpose. She is both goddess and jailer."
Just gave me the chills. This man Rob ,is amazing. I read his site regularly, in his writing, I can get lost, I can finally say, "Yeah, I know what you mean!". I know that there is someone out there that understands completely how I feel. Probably more so than I understand it myself! Rob has written a book that is going to be published soon, and I can't wait. I am actually fasincated because his daughter, also diagnosed with CBPS is far different than Daniel. I wait for updates on Schuyler, intreged by her abilities, and listening for Rob's wittiness in his posts. I am very grateful that I found their sight, as it has helped me emotionally.
Sunday, April 1, 2007
Happy Anniversary to Aunt Ann and Uncle Mike
Happy Birthday to Uncle Jeff
Happy Birthday to sister Brittany..........the big 18!!
Happy Birthday to sister Tori.......the big 14!! OH My goodness!
And also we have Daniel's fundraiser on the 20th!! If you need tickets please let me know and I will get them to you. They are $20 each, which includes 3 games of bowling, shoes, Pizza & Pop. There will also be different raffles, drawings and fun stuff! Now come on, get your friends and get your ticket order in advance so your guaranteed a lane to bowl. Only the first 150 people can bowl! There are also drink specials through out the night. There are Nascar cups that I believe are $5,(we get 1/2 of that) and then you get a cheaper price to fill it up through the night! What a deal!!! Come on .........I bet you can't beat my high score. I'm the champ at 135!!! HA HA HA
Its going to be another busy month with all the birthdays, Easter, and doctor appointments, PLUS don't forget we are going to Grand Rapids in two weeks to visit the Conductive Learning Center. Can't wait!!!!
Also have the training for the Betty's Boob's group (3 day breast cancer walk) that is in my mom's name. We will be working select Detroit Tigers games at the booths that sell food and stuff.....so if you're at the game, check out the booth of Betty's Boobs! Unfortunately a few months ago we found out that my moms cancer has come back and is in her lungs. Since we first found our a few months ago, the tumer has grown 1mm per month. this is not a good sign. If everyone could just say a little prayer for my mom, Daniel's & the girl's grandma....that would be wonderful and it would be greatly appreciated. Please, please God, make her as comfortable as possible, and watch out for her. Thank you