Anyway, around 15 months Matt fell and bumped his head twice on the way down. I can't believe that was over 5 years ago, but I can still hear it as if it had happened five minutes ago. He was only five feet away from me, but I didn't actually see him because he was on the other side of a book case. He had already been walking steady for at least four months, but he just fell, apparently bumped his head on the book case and then the floor. Best I could figure. Well, he walked over to me crying, I held him for a while, he calmed down and then walked off to play more. About 15 minutes later he's trying to walk to me but listing to one side, very unsteady and falling a lot. His eyes were moving left to right, I think he tried to vomit, too. Panic set in, I called 911.
I lived on a small post then, across the street from the fire department. While on the phone waiting for a response from the 911 operator, I looked out and saw the Emergency Squad guys cleaning out their ambulance, screamed for them to high tail it over to the house. They weren't exactly trained for toddler rescues, more for military emergencies. They were going to wait for the local squad to arrive, but I pushed them into zipping us immediately to the hospital. I was Freaked Out Mom #1 at that moment, and I think they were more afraid of me than what was happening to my son.
Well, Matt seemed to improve a little at the hospital, but the doctors kept trying to get me to say his eyes were moving up and down, not left and right. I couldn't figure out why. Then they transferred Matt to another hospital for a stay and more tests. It took him a few days to fully regain his balance, but he was perfectly fine in about a week. For 6-8 months he was tested for everything neurological under the sun. If there was a test for seizures or other problems, he had the test. To make a long story short, he had absolutely nothing neurologically wrong with him.
As our final straw, the last visit with one of the top pediatric neurologists in the state, Matt was declared to have "nothing apparently wrong" with him. As the doctor was trying to shoo us out the door I asked if he thought Matt might have a hearing loss. The DOCTOR rolled his eyes up (I wonder if HE was having a minor seizure) and conceded to me, agreed to give him a little "hearing test". The doc took out a big clacker thing, clacked it behind Matt, Matt turned his head and was declared hearing. The Supreme Doctor felt he had satisfied Freaky Mommy's concerns. Not.
I now look back at that and realize Matt could have seen the clacker out of the corner of his eyes, felt the slight breeze as the doctor flapped the clacker, or possibly the sound was at just the right frequency or decibel range, close enough to his ears that he actually did hear some of it. But it was definitely NOT an accurate test.
I knew something was still wrong, and I was starting to strongly suspect hearing loss. We even started teaching Matt sign language, which he immediately picked up. I also made yet another appointment with our family doctor, at our tiny little clinic. At that appointment I told our doc that I absolutely was not leaving her office until she put in a referral for Matt's hearing to be tested. A few weeks later he failed his first hearing test. No surprise. A few weeks after that he had an ABR, and tested in the severe to profound hearing loss range for both ears. Simply put, my son was deaf. We knew it in our hearts, but it was a totally different thing to see all the lines on paper, literally in black and white.
How did I feel just at that moment? Shocked. Numb. Our fears confirmed. I watched my boy lying there on the bed and wondered how many stories I had read to him, how many songs I had sung to him, how many times I had told him I loved him, and how much he had actually heard? I wanted to hold him tight, make everything all right for him. Kiss his forehead and pray to God for a miracle of hearing. Or that the tests were wrong.
I wasn't paying attention to the audie at the time, too many other thoughts and feelings going through me at that time. But she told us she could fit him for hearing aids and maybe he'd eventually qualify for a cochlear implant. All this was so new to me I didn't know what to think, but this information gave me something to grasp onto. Some possible way to actually help my son. It snapped me out of my thoughts and immediately activated me. I'm the type that will prep for the worst case scenario, then move forward the best way I could. Simply put, I wanted a cochlear implant for my son A. S. A. P. Like yesterday, if possible. :)
Not the way it goes. FIRST, the audie explained, Matt needed to try hearing aids, and again, he could be fitted for them on the spot. How would you like to pay? I wanted to hand her the credit card and say charge it now, let's get it done. She said most insurance companies wouldn't cover ear molds, or even hearing aids, but would I like to call the insurance company and ask them some questions? The hospital could even provide us with loaner hearing aids until we determined if he even benefited from them, or until insurance paid for new ones.
So I called the insurance company. I still feel for the poor lady who was lucky enough to get my call. "When was your son diagnosed with a hearing loss?" "About 25 minutes ago." "Well, for durable medical equipment (HUH?) you have to go through a different program for authorization. I can send you the paperwork and you'll need your primary care physician go over it, local public health authorities blah blah blah..." "Hello, Mam? The audiologist is right here telling me she can fit him with ear molds right now. Are you telling me I will have to wait until you get me the paperwork, my doctor reviews it, etc. etc. etc. until the insurance company will pay for the molds? Fax me the paperwork right now at the nurses' desk and I'll have it filled out, fax it back to you..." "We would need to assign you a Case Manager to review your case before we would authorize payment. That could take two weeks." "Are you telling me that I have a test right in front of me that says my son is profoundly deaf, he could immediately be fitted for hearing aids and maybe benefit from sound, but we're going to keep him in silence while my paperwork sits on someone's desk for review?"
That's exactly what she was saying. Poor, poor Insurance Lady. She had to feel my wrath, became an easy target for Freaked Out Mommy. It is so easy to get frustrated with the whole insurance system, I guess I was off to an early start. I had to yell at someone that night, she was a nameless, faceless person, undeserving of my anger. I have since learned to be very polite with the insurance personnel, and they have served us well. The insurance has covered all of our hearing aid and cochlear implant needs for years, but that night I charged ear molds for my first son.
It was a two hour drive back to post. Dark, rainy, gloomy. Very fitting. We didn't have a lot to talk about, we were in such shock. My husband didn't vocalize his feelings well at that moment, he told me he just didn't know what to think. In my head I was already writing a letter to Any Congressman complaining that the insurance company assigned to soldiers serving the USA was not covering my son's ear molds.
I was President of the post Spouses' Club, and we had a meeting that night. Our club was working through some problems. I had spent weeks calling past members, prior Presidents, and convinced them to come to this specific meeting and promised we'd work out some of the major problems right then and there. As it was I was late and didn't care. But then it occurred to me that the VP, major PIA Herself (Pain In the A**) was running the meeting, yet another easy target for my wrath that night. I had my husband drop me off at the meeting and take our son home. I was so overwhelmed at that point, I have no clue what I was thinking. Maybe a diversion was okay, a meeting with a group of ladies, most of whom I liked and looked to for support.
I walked in the meeting and the VP was doing her thing. So I stepped in. "Listen ladies, I am SO GLAD to see all of you here tonight. I just came from the hospital, haven't even been home yet. You all mean that much to me, I think it's important for us to work some things out. But let me first tell you something. Matt was just diagnosed severe to profoundly deaf. Both ears. I am in shock about this, and not in the mood to sit here an put up with any petty fights and squabbles. This is how it's going to be..." Nothing like a little shock value to wake folks up. Shut them up, anyway. I stuck to the meeting, it went better than any we'd had in a long time, and set the ground work for a much stronger group. After the meeting I was in a perfect place for support from a lot of friends. But I was still clueless about what the future would hold.
The meeting finished, I went home and my hubby already had Matt in bed. We didn't know what to talk about, everything was still sinking in. We were glad Matt was already learning sign language, at least he finally had the use of words. That had relieved some of his frustrations. Our hunches about his hearing loss were confirmed. So we just sat at home and watched TV.
Our "normal life" had just crumbled. We had no clue what we were supposed to do next. Nothing in parenting books about something like this happening to your child. What, give him 1 tsp. of Children's Motrin, up his fluids, and the hearing loss should go down, improve while he slept? There was some support on the web at that time, but not as much as I had hoped for. We didn't even call our family. No, wait, maybe we did call his parents and my mom, but I can't even remember that. That's still in a bit of a fog. We had no clue what life with a deaf child was supposed to be like, how we could help our son.
Wow, what an eye opening experience. It felt as if our Old Lives had just stopped, back there at the clinic, and we were starting our New Lives that night. We had been through a lot together, Hubby had been overseas, seen and done some tough things, but nothing could have prepared us for that night.
Well, enough for now. I'll try to continue along these lines in the next post. Right now someone needs a diaper change. :)
No comments:
Post a Comment