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!
8 comments:
Well Melanie, you know my situation, so you know I totally get where you are coming from. It does suck. I am so VERY grateful that a lot of things are covered in Canada but the alternative therapies are not so Nate won't be doing any of those anytime soon. I spend way too much time trying to think of ways to make money. It's exhausting!
I can totally feel you Melanie, we are a one income family to and mainly because of Evan. Granted now that he is over 3yrs he does not have the weekly therapies that I take him to, most of it is done at school. But we still have PT, Speech and Hippotherapy. I really need to go back to work but I am so anxiety ridden over it, that I do not think there is a way to do it. I will be getting a part time job when Evan starts 1st grade. For now I am trying to sell weighted blankets and I watch my niece 2days a week, so that helps a bit. It is frustrating because I would love to do alternative therapies with Evan as well.
I can understand the wish for a money tree. While our struggles are different please know there are others out there who deal with those same frustrations around money.
There are days I feel like a bad parent because I can't do this or buy that or go there...I just try to remember that at the end of the day all Drew wants is a hug and a kiss.
Hang in there, chick!
I am so right there with you. Our van is on the verge of croaking and we need to get something much newer, but how? And if I commit to any kind of payment, there goes software, hardware, a kid pack... All things he needs, and badly, but geez, how???
Here's what I have to offer: put a paypal button up. I understand the Starlight foundation may also be useful. Of course, we could all pool our pennies and march a million moms of special needs kids to Washington in this, an election year.
It's fairly demoralizing, huh. I wish we had better options, resources, funds, support. Meanwhile, hugs, hugs and more hugs to you.
Perhaps we should give some real consideration to the idea of politics.
Oh Sister! I hear ya!!! I would love to go to PA with you and also to Canada for ABR and...on a vacation! Our debt is so bad now from all our "medical stuff" I just don't know how to get out.
It is really hard. There's the therapies, medical bills, alternatives, equipment and just when you think it can't get any worse - modifications to the house and a new car to cart the powerchair in. We are lucky cause at least we can work, though at times it feels like even that is too hard.
Hang in there.
I think I know how you feel. One income, the economy sucks, and there are SO many things that I want to buy/do with Charlie.
If you're talking about the institutues, I say start your own program at home if you can't get yourself out there. We've started the reading program with Charlie and I'm in the process of putting together a math program (I'm slow as molasses at these things).
Ditto ditto ditto. We just barely get by and then when we think we may possibly get ahead, something happens like our water heater sh*ts the bed (just happened on Friday) and there goes any hope of having a few extra dollars.
I know that the Parent-to-Parent Network in our state has one-time respite $ available for parents to get a break and also $ available to assist families in attending one conference a year related to their child's needs. Maybe you should see if anything like this is available where you are.
Hang in there. And I love the feeding chair; it looks awesome!
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