John 9: 1-3

I have gone through many different "stages" of accepting and changing what our life is. Some times I blame myself that Daniel has these disabilities because of something I did wrong during my pregnancy, or because I must have sinned really bad and this is how I have to repent. I have gone the route that its just a mix of Lonnie and I and it just didn't come out "right". I have gone the other route that its just a fluke. And sometimes I come back to its my fault he has to fight these horrible things. I blame myself.

But most of the time, if someone came up to me and said "I can make Daniel "normal" but he won't be like the Daniel you know now." I would tell them to forget it. I accept Daniel. I accept that he is different, and I love him for that. There is no way in any way shape or form that I would change, go back in time, fix, redo.....anything with Daniel. I love him beyond the ends of earth, I love him more that I can imagine loving anyone. And I want him to know how proud I am of him, and how wonderful he is and that I would NEVER trade him for anything.

Now, ask me if I accept how society treats people with disabilities.....and we're into a whole other blog! A blog that will allow me to use colorful language that I can't use here! Do I accept how things are difficult for Daniel?....NO. Will I fight to make sure that he has everything and anything that he needs to succeed? Well, sure I will or I wouldn't' be a good parent. Regardless if he had a disability or not, I would do it.

I want people to treat Daniel as if he is a typical child and not give him special treatment because he is different. I do not want people to pity Daniel or his family. I want them to learn from his struggles (and hopefully this blog is helping).

I believe Daniel is here to bless my life. Yes I have other children and I have learned a tremendous amount from them and I still am. But God gave me a child with special needs because he knew that I needed someone to need me...I needed to learn something...I needed to understand. And I have been blessed........with Daniel.

John 9:1-3
As he went along, he saw a man blind from birth. His disciples ask him, "Who sinned, this man or his parents, that he was born blind?"

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."

I guess a little bit of my religous parents rubbed off on me. I knew I loved them for a reason! :)

An emotional day for Mom....

Emotional Roller coaster

One minute we're up!!

The next we're down!!

Up!

Down!

UP: Today Daniel had his first EI (Early Intervention)at home session for the school year. I cannot tell you how nice it was to have a good experience. This year there is a new teacher (Mrs. Kim) who used to be the teacher for EI a few years back but left to be an at home mom with her kids. Well she is back and I am very glad. She seems very nice. Another change this year is that when they come for the home visit it is not just the teacher but it is also one of the therapist. Today's experience with the visit and using our equipment at home has me thinking that this year is going to be a very good experience with the school system.

DOWN: My mother, the kids grandmother, has been fighting cancer for 20+ years. This past December we were told that it was back. She has been very very ill lately, and we have been having a nurse come to stay the days with her and one of her children (myself and my brothers and sisters) have been staying the nights with her. Today we got a call that there is a bed available for her in a Hospice home (the UP: she will be getting the correct medical treatment by TRAINED people, and she will be kept comfortable. the DOWN: the realization that my mom probably won't be coming home again, and that the home she has had for the past 25+ years, is not going to be filled with her home cooking, her knitting). It is a very very sad thing to have to go through. And yes I understand it is part of life, and that many others have gone before. But what you seem to not understand is.......this is MY mom, this is not fair, and no one should be meant to suffer this way, and to lose their sense of security. We won't get started on this but I was brought up Catholic and I do believe there is a God, but what I have a hard time understanding is why he has to make someone like my mother (or anyone for that matter, that is a good person) suffer. Again I am not opening this can of worms......because I am very thankful to God for helping Daniel along the way......but again, why is it that the good ones have to fight, struggle and suffer?

UP: Daniel is doing so great in all of his therapies, and we have been very lucky in having good therapist along the way. I hear horror stories from other parents who say that their therapists don't interact well with their kids, or that they just seem to be there for the pay. We have been lucky, Daniel's therapist, while I am sure that they are there for the money too, but they truly love Daniel. Unfortunately we had to end one of our sessions this week, for a few reasons.
Here's the DOWN: Daniel had two different Speech Therapist. One working on feeding issues, the other working on Augmentative Speech. According to Insurances, you can only have ONE type therapist. So for now, I felt that getting Daniel the communication is the most important. Now mind you Daniel has been seeing Ms. Anna, (his feeding therapist) for about a year, and she has done an AWESOME job. so there is the second part of the DOWN: We had to stop feeding therapy so we won't be seeing Ms. Anna anymore. (Unless of course I can figure out a way to swing it!)
Another reason we had to lighten the load of therapies if truth must be know....I need to spend some more time with my mother before it is too late. I know its silly and you think big deal therapy was only 2 hours a week. Well those two hours, are going to be spend driving to, or talking on the phone, or just plain sitting with my mom. I need those two hours for a while. And then maybe we can get back to that. Very selfish perhaps on my part, but Daniel will also get the benefit of spending more time with his grandmother, that I hope and pray he will be able to remember when he gets older.

WOW, its April already. Holy crow where is the time going?? Lets see because I forget so much, lets get them out there in case I forget.
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

February Entries

Feb 28

HAPPY BIRTHDAY
MS. CAROL
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Feb 22 New Way Bar Fundraiser
Where to begin, it’s been 5 days since our first fund raising event for Daniel and I am still flabbergasted at how many people opened their hearts, wished us well, and gave their all to make his event successful.

Let me start by saying, Thank you to each and every person who gave their time in selling tickets for the door prizes, the 50/50 raffle, the Pistons raffle, the grab boxes, and the tin can raffles. We had tons of different drawings, and EVERYONE was involved. It was very heart warming to see The New Way Bar in Ferndale filled with people. Many people that we might not have known directly, but were friends of a family member, or a co-worker, or someone who just heard about it through the grapevine. Yes I come from a large family, and many of them where there, but they brought their friends and they passed the word.
Daniel came for a brief time at the beginning of the benefit but we opted to have him leave with his favorite Aunt Ann because of the smoke and the loud music. So Daniel got to spend the day with Auntie Ann and some time with Grandma Tamm at church and home. From my understanding he was a very good little boy!
Now let me get into details of the fundraiser…….we had Aunt Jan selling tickets and Aunt Cathy gave her a break, along with sisters Brittany and Caitlin collecting for the 50/50. Sisters Victoria and Alexandra distributed the grab boxes (which were a hit with the younger crowd!) Cousin Ronda sat at the door to collect and give out door prize tickets, given breaks by Uncle John. I am sure there were many others that helped out too, but I was (and so was Lonnie) so scatter-brained by being introduced to people and trying to talk to people (which we were never able to stand in one place for more than 5 minutes! Sorry to the people who we missed and weren’t able to talk to for long or at all!) Entertainment-Well we had this wonderful man (who I didn’t even know prior) volunteer to come and do the karaoke for us! His name is Mike Dreslin, and he traveled far to come help us out. Many people were shy about getting up and singing, but there were some that enjoyed and did really well!! Like Cousin Bryan, and Uncle Tommy, who both did great. Then there were various people who brought their own equipment and played guitar and sang. Lonnie even got up there with his friend Doug and did a few songs…….I just LOVE when Lonnie plays, gets my heart going pitter patter!
We called 3-4 names ever hour for door prizes for 6 hours, that’s a lot of door prizes! Then we had the tin can raffles which were a huge success. There were about 30 different things you could put your tickets into to win. Among them were gift certificates and gift baskets, afghan (made by Grandma Tamm), hair products from various Salons in Royal Oak , plus a big bag of goodies for someone from head to toe from Aunt Aimee! Gosh so many people helped out by selling tickets, collecting donations (Harley, Uncle Tommy, Bryan……Caitlin, Karrie, Marie, Uncle Greg, Uncle Steve, Uncle James & Aunt Cathy …..and numerous other people!) There was Uncle Tommy’s girlfriend, Lisa Phipps, who brought tons of food, pizza, ribs, salads, ham roll ups (which Tori and Brittany ate!!) chicken wings. So many things. Then Tina from the bar got more pizzas at the end of the night. Everyone who helped set up…….Ronda, Jamie, Jason, Bryan, John, Jan, Caitlin, Alex, Brittany and Tori for watching Daniel!
Yes I’m rambling, but there are sooooo many people to thank. Gosh all the companies who donated raffle items off. Those where a great hit, and the silent auction items, from the signed jerseys to the hockey tickets and hockey puck, and the Pistons tickets! WOW, all I can say is WOW. And also thank you to the many people who got in on the door prize and pistons raffle but weren’t able to make it. Wow, wow, wow. Oh! and the waitstaff/bartenders donated half of their tips throughout the night also!
Now, to write and mail all the thank yous! And if I forgot someone, please accept my apologies
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February 18

Right now, All I can say is WOW.......I didn't realize how many people you can shove in a little place like that!!!
and WOW........how many people are so giving!
Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around
and everyone there, did just that......they have helped Daniel greatly.
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February 17

FUND RAISER TODAY! THE NEW WAY BAR IN FERNDALE. FROM 2 P.M. TO 9 P.M.
BE THERE OR BE SQUARE!!! COME JOIN THE FUN......MUSIC, SINGING, TONS OF PRIZES AND RAFFLES!
iF YOU'RE IN THE NEIGHBORHOOD, STOP IN AND SEE US!
AND DON'T FORGET TO SAY
HAPPY BIRTHDAY TO DADDY
( You can call him Lonnie!)
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February 12 ONE YEAR SEIZURE FREE
ONE YEAR SEIZURE FREE!!!
Yeah!!! We made it. Exactly one year seizure free! This is HUGE!!!! We were so excited by this we made Daniel his own blueberry muffin today! Yummy! That was our celebration!
Yes we can finally say we made it through this year, but there is always the very very strong chance Daniel will have seizures again. Different types, a different severity, Daniel will always have the high potential to have seizures. It is just awesome that the medication he is on has done a wonderful job so far!!

Unfortunately soon he will have to be taken off this medication because of the possible side effects. Then we will have to find another med to hopefully stop any break through seizures. It was a huge thing to get seizure control with the Infantile Spasms. Obviously the more spasms you have the more of a disability you will potentially have. With your brain seizing so much you don't have the time to learn and the damage to the brain is higher. We were very fortunate to only have to be on one anti-seizure medication at a time. Many people with epilepsy are on multiple seizure medications and STILL don't gain seizure control. The type of epilepsy the Daniel has, seizure control is critical to everything else. So .......Thank you God for letting this stuff work.

Wednesday we will be going to have Daniel's teeth fixed, he will be given a sedative to relax him and they will quickly do the work. I am hoping because it will be happening at "nap time" that the medicine will make him fall asleep and he won't be awake at all. Otherwise I imagine it will be a very traumatic experience for me ( ) I don't handle these appointments very well. I hate seeing him have things done to him that scare him, which he doesn't understand. Then Wednesday afternoon we have an appointment with one of my favorite doctors. Dr. Chugani, I always come away from his office feeling ok with what is going on. He has a way of making things "not so bad". Although it could be different this time as I have a lot of questions to ask him about alternative methods of therapies. Conductive learning, Euro-peds, Hyperbaric Oxygen, stem cell.....is Daniel technically classified as cerebral palsy? So he have dyspraxia, neuro-motor disorder, muscle disorder? Some of the things that are going on with Daniel (the spasicity in his arms) do not fall under the diagnosis of CBPS; they are not controlled by the part of his brain that is the perisylvian area. So does that mean that the spasticity is from the IS? Or is it because the Polymicrogryia is on more that the perisylvian area of the brain? And....further more does the PET scan that Dr. Chugani does, does that tell WHICH parts of the brain are working and which are not? And if a certain part isn't working can we train another part of his brain to compensate for the section that isn't working? Would the stem cell therapy that isn't legal in the help him with his arms and the movements, strength and muscles in his upper body? There are studies that show that HBOT helps children with CP, well Daniel mimics CP....why wouldn't it help him? Thing that stinks about HBOT if it did help him wouldn't be covered by insurance because.......it’s NOT proven.... Well I could go on and on about this stuff.......I have read just about everything that I can find (and understand) on the internet. We are Daniel's only advocates, and we have to make sure we are doing everything that we can for him. And damned if I'm not trying to understand all this medical stuff.
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February 8
Daniel got his medical alert bracelet this week. People think..well why does he need one of these little things. Here is my thought...as much as he is in as a passenger, if we were to (god forbid) get into an accident and I wasn't able to care for him and got hurt. The paramedics would be able to tell right by his bracelet what is wrong and his emergency contact information. It was a wonderful idea and a great Christmas gift from his sister Caitlin.
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February 7
Having a heck of a time keeping Daniel healthy. It is either a cold with sinus issues, or teething.....both of which is making for a not very happy little boy who is, I believe, on strike from therapy sessions. He refuses to do ANYTHING this past week
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February 6
YES! it is finally in! We have our very owe Rifton Gait trainer!!!!
I am sooo excited, maybe with having one here and us getting Daniel in it more than once a week, we will be able to teach him to scoot around the house. Give his little guy some mobility!!!
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February 5
Let’s see, we didn’t have a real eventful weekend but never the less it was relaxing. Daniel has been playing with blocks a lot lately. He isn’t stacking them, but I do the stacking and he does the knocking them over. Its very cute, he’ll knock them down and look at me like, “Hey did you see that? I knocked those down all by myself!” He is so cute! The kid definitely has personality. This is what keeps me going. Brings me back to the here and now, instead of wishing a had a magic crystal ball that I could get a glimpse of who or what Daniel will be 13 years from now. I watch him a lot, and wonder what his speaking voice will be like when and if he starts to use it, if he’ll be able to play with the other kids his age, what will he look like, will he end up looking different from the other kids because of the lack of use of his limbs? Will he be left handed or right handed? These things nag at me continuously. Will he ever feed himself, speak words, take his first step unassisted? Will he be invited to birthday parties? How about, will he eat solid foods?
It is very painful when the reality hits, that Daniel, no matter how hard I want him to do the things the other children his age are doing, he can’t, and he won’t for now. I see other children clinging to their parents hands as they walk around the room, or taking a snack and putting it in their mouth and eating it. And these little things tear at my heart, because Daniel can’t do them. I am waiting for the day when he realizes that he isn’t like everyone else, and how am I going to handle that? How am or will I be able to explain to him, that God made him differently then other boys and girls. Will I be able to make him understand that he is different because he is special. He has something MORE than those other kids who are considered “normal” His personality shines. He can touch lives, and make people realize what they have shouldn’t be taken for granted. He works hard for what he has. All these feelings for Daniel can some times be very overwhelming. You don’t realize until you have a child that has issues, how lucky you are. We take things for granted, we take the things that are suppose to just normally happen for granted. The first steps, the first words, the first smiles, the first days of school, the first school dance. These things aren’t happening for Daniel and it is so very, very unfair. I look at my little boy, and think……God why did you have to make Daniel be “special”? Why couldn’t you just let him be a “normal” little boy? What did he do? What did I do? Why are you making him suffer for something that he couldn’t have possibly done? Look at him damn it………he doesn’t deserve this crap. He doesn’t deserve to have to work his little butt off everyday and still NOT be able to do what a 18 month old should do. WHY ARE YOU DOING THIS?? I apologize if I offended anyone in writing this. I do believe there is a God, I just don’t always understand why he chooses to do the things he chooses for some people. (ex: Daniel and his Grandma). I know there are millions of people who are worse off, or have had tragedies in their lives. I apologize if I seem negative about Daniel. I am not. I love him with all my heart and all I want is the best for him and I will spend the rest of my life doing WHATEVER it is I need to do for him. This is reality, this is the reality for Daniel….and I try to remain positive and keep looking for additional ways to help him……it is all going to be a very very hard road, but it will be one that he will never travel alone because I won’t let him. I will be standing next to him when they are pushing him to hold his head up, or push with his arms. I will be his voice, I will be his guide, and I will be strong for Daniel……and he will know…..it is all going to be ok
Ok I’m done ranting and raving. Its just one of those days
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