Oh I wish, I wish, I wish with all my might.....

How can I put this without sounding like I am ungrateful for all that we have?!? I can't, so I will just say I wish we had a money tree in our backyard. I don't know how people do it. I don't understand, how other families are able to provide all these things for their families. Don't get me wrong, we are not living in a cardboard box, or anything like that. But we are also not livin' high on the hog either. We have one job that Lonnie works that pays well. I am by no real other cost savings choice, a stay at home mom. Meaning, I wouldn't want anyone else to raise Daniel, and even if I did decide to go back to work, finding someone who would be able to take him to all his therapies, and doctor appointments, and do all the things I wanted done with him, it would not be beneficial for me to go back to work. Let alone all the guilt that I would have by not being with him. Special needs or not. So we are lucky in that aspect. But it makes it very, very difficult to maintain all that we do have. I am not able to go out and get the newest fashion, we do not go out to dinner a ton (OK MAYBE A FEW TIMES) but its to fast food places! We don't go on vacations, or out to the movies, but we do have basic cable. But there are times when I get so very bummed out because I wish we had the ability to get things that I know Victoria (the one girl still at home) would like to have, and the things that I know that Daniel could really use to help him get farther along. But AI must remember there is a budget and we must stick to it, and save, then decide what is best...but it still sucks. I wish I had a tree in the backyard, or a buried treasure, or a rich uncle, or an angel, or a genie in a bottle, or just good luck and found something cheaply. But as most people who have a special needs child, nothing that can be used with them comes cheap. But instead comes astronomically expensive. We have been able to find things occasionally on Craig's list or eBay, or on the SCE yahoo group for pretty good prices. But sometimes, even those pretty good prices are more than I can afford. Then the depression sets in because I feel like I am failing because I am not getting Daniel everything he needs. UUUGHHHH. I know, I know.......at least he has what he does have and we are blessed by that. But boy oh boy the three things I would love for my fairy godmother to give me is
the Childrite Therapy Chair and yes you're right it looks just like the bumbo chair
but about 5 times more costly. SUCKS
Second would be the litegait generally insurance won't pay for this as it is a luxury. Did you know weight bearing and walking is a luxury?! Me neither, but apparently it is. Now for the third and largest thing, this is for Daniel but also for us as his parents. There is this institute in Pennsylvania that teaches parents how to do different things at home (a type of therapy) to help Daniel reach his true potential. The first course is at the end of September in PA. Which means, traveling by car, staying a week and going to a class for 50 hours. I so badly want to do this. I dream about it, I think about it all the time, I come up with schemes on how we can get the money to go. I know you're thinking, well you already take Daniel to therapies. Yes you are right we do. These therapies are treating Daniel's arms and his legs, his body. This places teaches us to heal his brain, to train his brain. I will get into this more in another post. Different therapies and books I have been reading up on. I read these books and I get so excited because I see that there is more of a chance for Daniel to reach his fullest, but then bummed because I can't get it done now, when his brain at the best stage for learning it. Anyways.......star light star bright the first star I see tonight, I wish I may, I wish I might, Have the wish I wish tonight. Maybe Daniel's birthday fairy will give him these next week for his birthday! :) LOL. yeah right, when monkey's fly!

To Sleep Means to Dream....

To sleep means to dream, to dream means to wake up sad, scared and alone.

I wish I could sleep like I use to. I could sleep, and sleep and sleep and never have a dream, or if I did. I didn't remember them.

Lately, when I am able to sleep (which isn't often, not because I don't have the opportunity, I have insomnia). I am the text book example of it. Depressed, stressed, anxiety (about sleeping), and heck for all I know.....mental illness and/or menopause?!? Anyways, I have this desire to sleep but not to dream. I have this desire to sleep, but I can't, I crave sleep and beg for sleep, but I also am in fear of it. I want to go to bed.......yet I don't. Yes here is that mental illness creeping in.

I am having dreams.
Dreams to me are suppose to be pleasant, nice visions. Mine are to some point,
they are just unrealistic. (Did you know on average a person spends 6 years of their life dreaming?)
Let me say this......I wish that when I dreamt, that I wouldn't remember them. Or that they weren't so vivid, that I wouldn't wake up with a sickening feeling. A feeling of hope, but a feeling of despair. A feeling that is so gut retching, that it makes your whole body ache? A horrible feeling of failure, not being able to do what you're suppose to be able to do.

I have having 2 different reoccurring dreams, the kind that if you can yell at yourself to wake up, you do, but then you fall back asleep right to where you were before you woke up.

Dream #1)
I am out walking with Daniel and he is in his push wheelchair, and we're heading towards the park.
There are other kids there, but we stay to the area where they aren't around much as I don't want to be on guard with the eyes trying to figure out what is wrong with Daniel. So I put Daniel in the swing and I'm holding him up and swinging him. Talking to him like I always do, "wanna go higher?" and waiting for his big open mouthed smile and that high pitched squeal. So I push him a little higher........and the giggles. We do this for a few minutes, and I say "ok Daniel, its time to go" and I stop the swing, unbuckle him, pick him up out of the swing and start to walk over the the stroller and he is doing his little leg thrusts which means he wants down. Daniel can't walk but he can stand supported by me. So I put him down in the grass and crouch down next to him still supporting him to show him the grass. I show him the sign for "grass" and "bug", and I say the word as I have him watch me do the sign. He is always watching my mouth when I talk. He wants to talk I can see it in his eyes, but he can't get his brain to tell his mouth what to do. But in my dream today he repeats me. In this most wonderful, little boy voice, this tiny little meek sounding voice......."ug" he says for Bug, and I am excited and I say "yes your right Daniel I love your big boy voice, can you say grass"..."gggggggggggrass", of course the tears are flowing because for whatever wonderful miracle Daniel is talking to me. So of course I want to rush to go home and tell Lonnie and show him what Daniel is doing, and I stand to pick him up and he says "go home now?" with these big brown eyes. And I say "yeah lets go hurry" and he grabs my hand, and starts to walk, with his hand in my hand, holding on with his little fingers around my two fingers, and says "come on hurry hurry, lets go see daddy" and we are running little boy running with his little legs pumping as fast as he can go.

This is where I wake up every time.....at first the feelings is awesome, incredible and any other words like that you can think to describe it. Then reality sets in. If you're reading this blog for the first time, or you don't know Daniel. Let me explain why this dream sucks.

Daniel is a beautiful little boy, who for whatever reason got dealt a really crappy hand for no apparent reason. Maybe its my fault, I don't know, I go back and forth on that issue too. Again, for whatever reason that I can't change even if I made a deal with the devil......Daniel has a brain malformation that is call PMG, and the part of his brain that it affects if the perisylvian area on both sides of his brain. Meaning.......it causes him not to be able to speak, it causes him to have many feeding issues, swallowing issues.....and last but not least Daniel also won the frickin' lottery and has been diagnosed with Spastic Quad CP (meaning Cerebral Palsy that affects all 4 limbs)
That said. Daniel can't talk. Daniel can't walk, and Daniel has a hard time using his arms to hold my hand. So my dream..........is a frickin' nightmare........and I can't stand sleeping anymore.

Dream analysis:............I so badly want my child to be able to do what the other children are doing. I want him to be accepted. People say he doesn't know any differently......these people are lucky that I don't have a gun when they say that. This child is highly intelligent. He knows things, he follows directions, he knows his colors, he can find things......its the frickin' body that he's got. It doesn't want to listen to what his mind I am sure is screaming. I don't want my child to have to struggle.........its not fair. Look at the many pictures on this blog and tell me that he deserves this crap. He doesn't. Not one second of it. If someone is meant to be punished for some sin that happened that I don't even remember or know what it is, it shouldn't be him. He did NOTHING to deserve what he has.

Ok, sorry.........I am done now, I've cried enough for tonight.......until I wake up again....then it will start all over again........."groundhogs day"