A Moment to Vent

I look at my blog as a journal/platform/connection venue. Keeping that in mind, this post is more on the journal side of things and may not even make sense to anyone but me.
With all due respect to Forest Gump, I think he got it wrong. Life isn't like a box of chocolates. You see, if it were like a box of chocolates, whether or not you like the flavor, it would still be sweet. At times, life is anything but sweet. Lets face it, some moments in our lives are just plain bitter. Sometimes I think life is more like a roller coaster ride that we've been thrown head first into. We hang on for dear life as it goes screaming down the tracks. Life can take us so high we feel as though we could stroke the heavens. On the flip side, sometimes life takes us so low we have to brush the ash and brimstone from our feet before we can move on.

Usually though, to me, life feels like the weather channel. It can be sunny with blue skies, or partly cloudy with a chance of rain. Lately, it's felt like we just don't know what whether to expect. Life in general is sunny, but there are some clouds lurking in the background. Some days (and weeks) are just full of thunderstorms. This has been one of those weeks.

I think as a parent, particularly of a child with disabilities, we've learned to recognize very quickly when someone is offering us a great resource. On the other hand, we've also learned to recognize the Bull S#*!t. Our experience here in Colorado has been interesting. We're moving forward without the support of the Deaf Community and it's resources. (Corbin finally being able to hear made that an easy decision.) However, we feel like we're in limbo, and we don't have the support we had in New Mexico.

I'm not always this discouraged, but lately I've felt like I'm banging my head against a concrete wall! We went to the doctor on Tuesday. They made a scheduling mistake. So, we went back on Wednesday. The Doctor obviously knew nothing about what we are dealing with. Since she recognized that she had no answers, or even an inkling of where to point us, she referred us to another doctor. We won't be able to get into that doctor for another month. Argh!

Of course, that doctor isn't qualified to help us. She'll meet with us, and ultimately she'll have to refer us out to a specialist. In my experience, specialists can take months to see. So, this entire process will take about two or three months. As a parent, when I know my child is going to see a specialist, I can't help but feel hopeful that they can provide us with some answers. Usually my hope is dashed. They poke my son, invade his personal space, and in the end they have no answers. My question, is why can't the two family doctors confer for five minutes and point us in the direction we need to go? Why does everything have to be soo slow??? As a patient, and an advocate for my son, I view myself as the employer of these doctors. I pay them. I expect results. If they were employees in any other field, they would be fired.

It reminds me of when Corbin was still a baby. Our family doctor referred us to an ENT. The ENT spent awhile looking in Corbins ears only to say, "I can't see anything." My response was "Well if it's the cochlea, you wouldn't be able to see it would you?" He shrugged and brought another ENT in. They spent awhile chatting, throwing around medical ease, and finally turned to me and suggested surgery.

Unfortunately for them, I read alot. When Corbin was first diagnosed with a hearing loss, I read everything I could get my hands on. I learned all about the different types of hearing loss and all about the middle and inner ear. I understood their jargon, and I also saw the bottom line. They wanted to put my son through pain and suffering to satisfy their own curiosity. The surgery would solve nothing for Corbin whatsoever. My mother bear came out in her entirety that afternoon. I was less than polite in my response.

Yesterday we had a home visit from some of the therapists from the preschool. Two of the three preschool specialists who have been working with us are fantastic. They have given us great ideas. I've seen real progress stem from their suggestions.

However, one of the therapists just seems like she's not on the same page. She came yesterday in her head-to-toe matching outfit with coordinating jewelry. She pontificated for almost an hour and said absolutely nothing. Please don't get me wrong, I have no problem with women who dress nicely. It's just that after an hour, I felt like she had spent more time worrying about what she was going to wear to our meeting, than she did considering what she should say. I kept wanting to say "Cut the crap. You have no point. I know it. You know it. We are done here. " However, I didn't say that. I know enough about the system to understand that would get us nowhere.

I guess I'm a take the bull by the horns type of person. If there's a problem, I face it head on. I expect alot out of our early intervention team. I want them to research and find answers. I expect them to care as much as I do and put everything they've got into helping my son. I want them to help him. Unfortunately, the truth is that these people don't care as much as we do. They are missing a vital component. They don't love Corbin.

Perhaps I should lower my expectations in the resources available to us? I don't know. What I do know is that I'm losing my patience with these so called experts. Maybe I'm wrong to expect soo much.

As a family, we have lost time, money, and hope going through all of this. It makes me want to scream. Having vented thoroughly, I'm feeling a little better now. It's sunny outside, I'm going to take Corbin for a bike ride.