I'll love you forever......

I read this poem from the website of another mom, Melissa, and it hit home for many reasons. Hope you don't mind Melissa..........and thank you for sharing it with me.

1.) Because I hope to have this bond with my children

2.) My mother is very ill, and it made me think of her. During the past couple of weeks she has lost her ability to do many things, and my brother Greg (bless his heart) is the only one my mom truly felt comfortable enough to trust to carry her from her wheelchair and lift her into bed.

It is by Robert Munsch

A mother held her new baby and very slowly rocked him back and forth, back and forth, back and forth. And while she held him, she sang:

I'll love you forever,
I'll like you for always,
As long as I'm living my baby you'll be.

The baby grew. He grew and he grew and he grew. He grew until he was two years old, and he ran all around the house. He pulled all the books off the shelves. He pulled all the food out of the refrigerator and he took his mother's watch and flushed it down the toilet. Sometimes his mother would say, "this kid is driving me CRAZY!"

But at night time, when that two-year-old was quiet, she opened the door to his room, crawled across the floor, looked up over the side of his bed; and if he was really asleep she picked him up and rocked him back and forth, back and forth, back and forth. While she rocked him she sang:

I'll love you forever,
I'll like you for always,
As long as I'm living my baby you'll be.

The little boy grew. He grew and he grew and he grew. He grew until he was nine years old. And he never wanted to come in for dinner, he never wanted to take a bath, and when grandma visited he always said bad words. Sometimes his mother wanted to sell him to the zoo!

But at night time, when he was asleep, the mother quietly opened the door to his room, crawled across the floor and looked up over the side of the bed. If he was really asleep, she picked up that nine-year-old boy and rocked him back and forth, back and forth, back and forth. And while she rocked him she sang:

I'll love you forever,
I'll like you for always,
As long as I'm living my baby you'll be.

The boy grew. He grew and he grew and he grew. He grew until he was a teenager. He had strange friends and he wore strange clothes and he listened to strange music. Sometimes the mother felt like she was in a zoo!

But at night time, when that teenager was asleep, the mother opened the door to his room, crawled across the floor and looked up over the side of the bed. If he was really asleep she picked up that great big boy and rocked him back and forth, back and forth, back and forth. While she rocked him she sang:

I'll love you forever,
I'll like you for always,
As long as I'm living my baby you'll be.

That teenager grew. He grew and he grew and he grew. He grew until he was a grown-up man. He left home and got a house across town.

But sometimes on dark nights the mother got into her car and drove across town. If all the lights in her son's house were out, she opened his bedroom window, crawled across the floor, and looked up over the side of his bed. If that great big man was really asleep she picked him up and rocked him back and forth, back and forth, back and forth. And while she rocked him she sang:

I'll love you forever,
I'll like you for always,
As long as I'm living my baby you'll be.

Well, that mother, she got older. She got older and older and older. One day she called up her son and said, "You'd better come see me because I'm very old and sick." So her son came to see her. When he came in the door she tried to sing the song. She sang:

I'll love you forever,
I'll like you for always...

But she couldn't finish because she was too old and sick. The son went to his mother. He picked her up and rocked her back and forth, back and forth, back and forth. And he sang this song:

I'll love you forever,
I'll like you for always,
As long as I'm living my Mommy you'll be.

When the son came home that night, he stood for a long time at the top of the stairs. Then he went into the room where his very new baby daughter was sleeping. He picked her up in his arms and very slowly rocked her back and forth, back and forth, back and forth. And while he rocked her he sang:

I'll love you forever,
I'll like you for always,
As long as I'm living my baby you'll be.

Oh My Gosh..........November Already!

Where in the world did the time fly?! Can you believe that it is already November?

UUUGH!!

If I close my eyes really tight and try to zone out all the noise around me maybe the next two months will slip by and I won't have to participate or notice anything at all. Heck I have been fretting about how busy life is and all the crap that has been going on, and now on top of it............Its NOVEMBER!!! Thanksgiving, Christmas and all that other frickin' stress............NO THANK YOU!

I'm going to stick with an October issue just because I refuse to acknowledge November as of yet!

We live in a city that is well populated, on a semi busy street. And why is it that NO one goes trick or treating anymore? We had maybe, if I stretch the truth just a little....15 kids, and 8 of them were probably high school kids!! I remember when I was younger, when we went out trick or treating, we went out with pillowcases, and you had to stop back at home and drop off what you had because the pillowcase was getting too heavy.....then you went back out! And there were tons of kids out, big groups of us. Well that past time seems long gone in this neighborhood. Poohy! seems Halloween is losing its luster!

But my little guy still got dressed up and went out to the few neighbors who had their porch lights on, and got some candy for his daddy! Here's a photo of Daniel in the car on the way to getting some candy! My little Koala Bear! and below is Zachary's First Halloween.....he's a boo ghost!

And we're UP UP UP!!!

First:

Happy Birthday Little Miss Katie down under in Australia!!!

Second:

Today Daniel went to see Dr. Chugani (his neurologist) for his first appointment since being off ACTH. And wahoooooooo, (have I mentioned before I LOVE going to see Dr. Chugani, he makes me walk away feeling that my child is just a typical child) he says Daniel is just doing great, and that we are going to start to wean him off of the Zonegran medication that he is one for seizures. Which will leave Daniel still on the Vigabatrin (anti-seizure meds) and the Robinul (for drooling, caused by the PMG).

This is a good thing, weaning the meds, but I will be honest with you. I AM SO NERVOUS!! Daniel was originally one just one anti seizure medicine for 1 1/2 yrs (vigabatrin) and it controlled the IS seizures. Then for whatever reason they came back and we added the Zonegran. This didnt' stop the seizures and that is when we decided that we'd do the ACTH (successful!). So because his EEG came back clear and the Zonegran didn't really do anything in the first place Dr. Chugani said to start Daniel on the wean. Which we will start to do this weekend and then he will be completely off that by the end of November. IT IS SO NERVEWRAKING! and I am so torn. Yes I want him off the med, no I don't want to mess with anything because he is seizure free right now! Why mess with a good thing?!?!?!

Then in 3 months we go back and we'll get another EEG. And if it comes back clean again, we will begin weaning the Vigabatrin. The thought of this itself gives me a horrible stomach ache! NO antiseizure medicine at all!?!?! ARE THEY NUTS!?!?! But hey Dr. Chugani hasn't steered me wrong yet.

Today Daddy came along to our therapy sessions and got to see all the wonderful progress Daniel has been making. In fact............Daniel took such pride in Dad being there that he even showed off quite a bit. He did laps in the hallway walking with the posture walker. He is such a show off!! He was so proud of himself. Its Awesome! (there's my favorite word again! I've got to find something else to use pretty soon!)

Pretty soon I'll just break out into cheer:

"A"

"W"
"E"

"S, O, M,E"

AWESOME, AWESOME.....TOTALLY! RAH!

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.

Including Samuel

Hey! There are two posts today so if you're reading this one, also make sure to check out Daniel and his pumpkin carving skills!

I read about this little boy named Samuel the other day. And it hit me hard. I immediately wrote to his father Dan, and asked if I could do a link to Samuel's site. Samuel has Cerebral Palsy and is older than Daniel. But when I watched the videos and checked out pictures and read, it felt like I was reading all about Daniel. For whatever reasons, I felt a sort of bond. I want to get any information I can from these parents ( I know that there are different circumstances between the kids) but they seem to be doing everything that I want for Daniel.

There was one little clip where his mom was explaining when they noticed that there was an issue with Samuel. All the things that go through your head, "how will he be able to run and play, how will he hold a pencil in school, how will he fit in." Those are some of the things that go through my head on a daily basis. And I try with every ounce of my being to make sure that Daniel has everything and anything that might make his life a little easier. Some people may think I go overboard, or that I am to the extreme. But if it were your child, I guarantee, you would be doing the same thing. There is always the fear that I will let Daniel down. That I will skip a therapy session because I was tired or there was some other "emergency" and that could have been the therapy session that something clicked for Daniel and he understood what to do.

Any how, Samuel's father has made a documentary called "Including Samuel". Watch it. It is heart wrenching in many aspects. He did a wonderful job. I can only hope that Daniel does as well as Samuel obviously is doing.
What I hope you get from visiting his site...., just because our children are different in ways that they had no choice in, they are people, just like you and me.

I hope that people will see Daniel for who he is, not what he has. I don't want him to be known for the little boy that can't talk, or the little boy who moves funny. He is Daniel, and he is my little boy, and I could never be more proud of him that I am. He is truly my hero.

Here are some additional photos of Samuel (because he's so cute!)

PUMPKIN CARVING DAY!

Daniel was so excited about today's planned events that he couldn't contain his excitement. So even though little Zachary was sleeping in Uncle Daniel's (tee hee hee) arms. When I told him we were going to make fun Halloween breakfast treats, carve pumpkins and decorate our Halloween haunted house, he was so excited he shouted with joy!

It was PUNKIN' CARVING DAY!!!

So began the day with making our surprise breakfast. OOOOOOH Gross! We ate

BLOODSHOT EYEBALLS!!!

SICKO!!

Then we got all the punkins in the house and cleaned them all out, Dad helped a lot with this as mom as some sensory issues and doesn't like to touch the guts!

But I did my own all by myself!!!

Victoria kept telling me what to do, so I just ignored her.

What does she know??!?! She thinks she knows EVERYTHING!

When Alexandra left the room, Zachary was being loud and cranky. So I shoved him in Victoria's pumpkin and blamed it on her!

(well he stopped crying!)

After all the mishaps and interruptions I finally finished my masterpiece.

The bestest carved punkin of 2007

by Daniel Spranger

Here is our gingerbread haunted house!

Hope everyone has a fun and spooky Halloween!

Our New Goal

This is a new piece of equipment that Daniel uses at therapy.

So far it is awesome for him. What I would like is to put the word out there to anyone that comes to this blog......

This is our wish list, or christmas wish list, or next years worth of wishes.

I think if we got this for at home, and we were able to work on it daily with him, his trunk would get so much stronger.

Anyways........if you hear of one of these or you know where we can rent, use, buy cheaply, steal (LOL JUST KIDDING) please send the information onto me at my email address located under my profile. Or if you just want to buy it for Daniel and sneak it under the Christmas tree.........by all means I won't stop you, in fact I'll keep the door unlocked!!

It is called the "walkable" or the "Lite Gait" or a "mobility frame". There are many names for it, but basically what it does is it supports Daniel's trunk, while positioned over a treadmill, which will then get him the motion of walking. There is much research being done with children and treadmills. Click the link if you'd like to learn more. Our insurance, as good as it has been will not cover this as it is considered a form of exercise equipment. Plus we are still crossing our fingers on getting his power wheel chair approved!