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Wednesday, May 11, 2011

Sometimes I am really scared

Awhile back I participated in BADD... a group writing day about special needs.  I wrote this post.  Then I went back and read all these posts other people put on there.  And thus began this journey into .... "uh-oh land." 

You see - the internet allows us to see what we couldn't before... the policies of other countries.
Other countries are doing what most people believe the USA should do... balancing their budgets (or at least trying to).
One of the ways they are balancing them is to cut funding for programs. (As I type this - I'm having a bit of an anxiety attack.)  I'm picturing our life without the funding for programs.

Alexander....
No nurse to stay with him during the day.  No one who is trained how to care for him with his g-tube. No one who knows what to do when he has a seizure. No one who is responsible for all his meds.  Would there be a day where I would wish for seizures?  Because.... if he went for too long without one we would lose services?  Who would watch him?  How much would that cost us? But really... who would want to take care of him?

No OT.  No eating therapy. No fine motor skills therapy.  No special cups to see if he will finally drink from one.  No eating tools = eating soft foods. 

No PT.  No gross motor skills therapy.  No stander. No walker. = No standing and No walking.

(crap..... bring me the brown bag to breathe in)

What about hospital visits? Doctor visits? Surgeries? (Breathe deep)
Special food formulated for his pump?
Bags for his pump?
Connectors?
Special anythings?

It is happening.... around the world people are beginning to take a hard look at funds.  I'm reading a ton of things about the health care system in England - and it scares me to death. 

How is it we can have so much technology to do so many things.... and come to a point where the future is still in jeopardy?  If Alexander were born 30 years ago, he would not be here today.  He would have been a statistic. I firmly believe that.  He can't quite seem to eat enough to maintain his weight.  He will.  But.... I don't think he would have made it through this last year.

I actually wrote this post yesterday and was going to save it for a rainy day.  Well... I don't mean to rain on my (and Alexander's) own parade.... because he's doing some awesome stuff! Here and Here.  So when I got up this morning... and I was pondering life, this post seemed just to stick out.  Because our blessings are due to all of these services.

UGH.  I'm not a socialist.  I was raised in the "ultimate capitalist" family.  A family that came from nothing but hard work and sweat to produce kids (my parents and uncles and aunts) who are all successful.  The values were - work hard and reap the benefits of what you sew. 

But - I would like to sew the benefits for Alexander.  Because he works hard... at the most minimalist task ~ and 5 steps is a miracle.  How many 9lb 5oz kids do you know that take 5 steps? And, I believe he will take 5 more, and 5 more - until he is a runner in the 500 relay (for Special Olympics, which I went to watch yesterday).  However, he won't do these things without help. 
So where does that leave me? 
Where does that leave my quintessential 'Robber Barron' father?  
How can I help people to believe that those less fortunate deserve such costly things? 
 Because ... everyone deserves to be the best they can. 

Because Alexander is a miracle.   

2 Comments:

At May 14, 2011 at 11:31 AM , Blogger Amy said...

He is a beautiful miracle!

Seeing these funding cuts kills me - I used to work on a program for adults with physical disabilities, keeping them out of nursing homes and in their own homes. I had so many people die while they were on the waiting list for services. It was just heartbreaking.

I hope and pray that Alexander's services will remain in place for as long as they are needed!

Have a beautiful day!

:)

 
At May 14, 2011 at 1:31 PM , Blogger Kisses4Kaylee said...

This is something that I have been afraid of for quite awhile...namely when I hear the political right~ specifically, the Tea Partiers~ speak of drastic cuts to Medicaid, Medicare, and Social Security. Is there waste? Yes-- address ways to be more cost effective. Are there those who are robbing the system? Yes-- weed out the corruption and stop supporting those who don't deserve it.

I am not a Socialist...but I am a human being filled with compassion and a belief that every life is worth living. As a Christian woman, I can only follow what I was taught as a young girl~ give more than you take; help those who need it. I cannot help but wonder if those concerned with balancing the budget at the expense of the most vulnerable among us believe that to be true. It is hypocrisy at its worst, because some of those same individuals who look first at cutting social services for the disabled in lieu of raising taxes on those who can most afford it (ie: Millionaires) open the other side of their mouth to preach the gospel of Jesus, whom they claim to be their Savior.

Of course, if you look at the Capitalist creed, our children cannot contribute back to the development of the free market; hence, by default, their lives are not going to be among the top priority of those who wish to reward those who work hard and, therefore, deserve to reap the benefits therein of that effort.

It's a double-edged sword and a world rife with hypocrisy. One day, I dream of finding a conservative politician willing to go against his majority party and speak out in defense of our children and those like them. One who will recognize that taxing millionaires instead of cutting social services is not Socialism OR the end of Capitalism, but the return of values that our country..which was built upon Christian values...was founded. Maybe then, I can return with peace of mind to my Republican roots. Right now, America is befuddled by the challenge of how to fix decades of financial mistakes, and a population who is against anything that speaks of a "liberal" (read: Democratic) philosophy.

Sorry for the long response, but as you can see, this is an issue close to my heart and about which I am passionate...and obviously, quite opinionated. :-)

 

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