Posts tagged ‘Health’

Preparing for the future

When I was with my ex-husband, Nick, and I had Gavin, his parents purchased life insurance for him. I didn’t understand why at the time. It seemed so morbid to me, preparing for your child’s possible demise. Then when Nick and I split and the policy was allowed to lapse and eventually close altogether, I began to thinking about insurance and life insurance in earnest.

When Rob and I moved in together, he made sure we both had at least a bit of life insurance. Of course, we had our car insurance, renter’s insurance and then the little private policies on the expensive electronics Rob loves so much. But life insurance? What was the deal? I would learn soon enough.

We had some very basic life insurance on each other; in case of something horrible. That way we’d at least have enough for a small service and that was good enough at the time. Then my health made a drastic turn for the worse. One doctor told me I was “24 with the body of an 89-year-old”. Life insurance was going to be next to impossible to get now! They require physicals; Rob and I both knew I wouldn’t pass one. Who wants to cover someone with Fibromyalgia, chronic migraines, GERD and IBS?

Then to make matters even more complicated, we ended up on public assistance again. With public assistance you aren’t permitted to have whole life insurance because you can draw money out against the policy. They view that money as cash. We needed the insurance but we needed to find decent coverage that fit all of our needs. It was a nightmare!

In the end, we manged to get our insurance agent to find something that worked for us and with us. Thank God!

Brought to you by your friends at America Life Quotes!

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Don’t rock my boat

Seriously, don’t. I’ve got enough going on in my life at the moment.

Gavin’s meds aren’t working, which you know if you still read Rob’s blog. I think you do. Dr. R wants to switch him to Lithium. I don’t want to go to Lithium. I don’t see where we have a choice.

We have Help Me Grow coming on Monday to do their unofficial evaluation of Emmett John. This is where they tell us if he is Autistic or not. I feel like I could grab the lady who works in the local day care. After all, she works with kids all days too. That doesn’t mean she is educated or should be evaluating children for Autism. Yet, the Children’s Hospital is waiting for Help Me Grow’s eval to help decide if they will evaluate Emmett John. You know, my 22 month old who still doesn’t speak.

Emmett John still doesn’t speak. He’s still angry. Developmentally he’s in two groups – he’s either right where he should be or he’s stuck some where between 9 to 12 months. He doesn’t speak. He doesn’t point. I can’t figure out how this happened.

Elliott Richard is stuck in the middle. He stands to lose his childhood – either protecting himself from Gavin or protecting Emmett John from Gavin. Or there are the rare times that he plays big brother to Gavin. He’s 4 years old and if we don’t fight for it, he may never get to be a kid. His childhood may become a casualty of war.

My migraines are worse. I’m reaching the limit on my Topamax. It isn’t working anyway, so what does it matter? Dr. J has increased my pain meds and added an anti-inflammatory that I can’t pronounce, which I should only take when I can’t take it anymore. He’s ordered bloodwork and an MRI. I should take my new meds but I don’t. I scared. I don’t want to end up like House – addicted and crazy, seeing people who aren’t there. I just don’t want to end up crazy. I’m all full up on crazy. I’ve had enough of my life being filled up with everyone else’s crazy.

Rob and I are fighting. Not over anything. Just over everything. Big. Little. Everything. Nothing at all. We’re stressed. Over-whelmed. Taking it out on the only safe place we have. Each other.

We’re all surviving. Just barely. Bobbing along in a little lifeboat. Some days the waters are calm and survival is easier. Other days, it sucks. I’m not gonna lie. The boat rocks. we take on more water than we can bail out. There are days our little boat nearly capsizes altogether, but for the grace of God. I don’t  know how we survive at all sometimes.

We have so much going on. Too much going on. Too much in our tiny little lifeboat. Don’t rock it. Things happen. We may not like them. We may not understand them. They may suck in a major way. Believe me when I say I know this. But don’t rock the damn boat. Maybe the things that we do…the decisions that we make…are for the best interests of everyone…perhaps they are based upon things not everyone knows about…maybe my last act, my last decision was made out of love.

I’m just tired. Life is so precarious in our tiny little boat. We work so hard for our tiny bits of stability. Now we have…this. This drama. This wondering. I don’t want it. I don’t need it. Keep it to yourself.

Don’t. Rock. My. Boat.

How many times must I mourn?!

I keep trying to get this blog exactly right. Just perfect – the way I want it. I’ve decided that it’s going to take me close to forever to get that accomplished and if I keep putting off my first official post until then…well, you may never hear from me again. (lol)

Emmett John had his ABR sedation hearing test yesterday. We’ve been waiting for this test for months. He had his basic OEA hearing test in January and the Audiologist couldn’t officially diagnose him but she said she felt comfortable saying that he had “moderate to severe hearing loss”. Meaning he was very close to being profoundly deaf. I was so sure he was deaf. I was ready for him to be deaf. I was ready to learn sign language.

Honestly, with the Hell that we live through every single day with Gavin and his Autism and Bi-Polar and whatnot. The Hell I endured at the hands of NTD and his mother before I met Rob. Then the continued Hell we suffered because of them after Rob and I were together – all throughout my divorce and custody battle. The various moments of Hell throughout my childhood. Surely, God wouldn’t do this…not again. Surely, he watched and he understood. Surely, he knows and understands that we can’t handle another Autistic child.

Oh forget the we*I* cannot handle another Autistic child…at least not right now. I just can’t. Not with Gavin manic the way he is. Not with Gavin hearing voices again. Starting puberty and having medication changes because we are on the “medication roller coaster” again. Not with Gavin having meltdowns of a caliber unlike anything I’ve ever seen from him before. It’s only a matter of time before he breaks his window or seriously injures himself.

Emmett John’s hearing is perfect. Everything we say…every sound…every everything he hears physically. But developmentally, he doesn’t hear most things. Apparently, this is common in Autistic children. I didn’t know this. He doesn’t make good eye contact – I thought he did. He throws these fits – I thought they were normal 21 month old fits…the Terrorist 2’s…now, not so much. So he can hear us but doesn’t talk. He babbles – like a 9-12 month old. I have no idea if he’ll ever actually talk. Does that mean he’s more likely Full-fledged Non-Verbal Autistic? Or could he still be some sort of High Functioning Asperger’s?

This will probably sound crazy and stupid to many of you. But how many times must I mourn the loss of my baby?!

How many?! He stopped responding to us. So obviously he couldn’t hear us. Right? So we schedule and take him for his OEA hearing test and he fails. The Audiologist says she feels he has moderate – severe hearing loss. I mourn the loss of my baby boy. I mourn the fact that I likely will never hear his voice the way it was intended. I mourn everything that he will never do. Never experience. I mourn every time he shoves a finger in his ear and gets frustrated because he appears to be unable to hear. I mourn because I don’t know when the last time he heard our voices was. Will he be able to remember them? How long can he hold on to those memories? I mourned many things when I believed Emmett John was deaf.

Yesterday all of that was Gone. Swept away in a moment. I had an Audiologist telling me that my baby could hear. Explaining that his “hearing was perfect” and he “doesn’t make good eye contact” and “hearing problems are common in Autistic children“. Now all of my work to recover and work on my mourning over his hearing loss had disappeared in a flash. The sedation nurse was so positive about the fact that Emmett John could hear – isn’t this great? Of course it’s great. It’s wonderful and I’ll do cartwheels – as soon as I mourn, again.

So here I am. Mourning my Baby Boy, again. Mourning for him. Mourning for us. This isn’t a life I would have chosen for him. This isn’t something I would have chosen to add to our lives – ever.

I’m mourning the loss of Emmett John in a host of new ways. I’ll recover in a few days. Until then, I’m just going to mourn and work on trying to make my peace with things.