Thursday, November 29, 2012

God Forbid Life Should Be Calm

My nine year old has always had some motor skill issues. She walked late, she's not very co-ordinated, she had a tough time learning to hold a pencil and write, stuff like that. The doctor, Kenny and I have taken a wait and see approach. We tried to get her occupational therapy through school but after fighting and jumping through many hoops, she was denied. Well, if we wanted to have her classified and put in special ed then they would have given it to her. She doesn't need special ed for curriculum work, she does just fine with that (Honor Roll fine). It was extremely frustrating. We got her some private OT to help with the learning to write stuff.

Then, and this is why I won't get Mother of the Year, Ken got cancer and everything else took a back seat to that. Yeah, not thrilled to admit it but we pretty much forgot all about her issues. She's happy, doing well in school, has friends, activities- just a normal nine year old. It was easy to forget about it. Except she trips over thin air and can't ride a bike no matter how much she tries.

Tuesday she had her well kid visit. Long story short, her doctor thinks she may have a mild case of cerebral palsy. We had to schedule  neuro evaluations and physical therapy evaluations. Those appointments are at the end of February and the end of March.

Did I mention our COBRA insurance runs out on January 8?  I had been thinking "Ok, we'll buy our own insurance. We're already paying $1200/month for COBRA so no big deal". Just got some quotes for insurance. The cost of buying our own insurance is much higher than what we pay for COBRA. Like $3000 for a family policy of crappy insurance. IF Kenny can even get insurance. I wasn't expecting that. Don't know why I thought an individual family would get the same rates as the big corporation my husband used to work for gets. I just wasn't thinking.

More heavily on  my mind is: how did my not paying attention to her problems affect the potential outcome? Is my delay going to make any treatments or therapies either ineffective or less effective? Basically, did I just royally fuck up my kid? I cannot even explain how awful I feel and how worried I am. It's an actual physical feeling in my chest. Holy fuck, can things please go fucking right for this kid?


  1. Did you explain to the neuro/PT peeps that your insurance runs ou 1/8? If not, call and tell them, and tell them she MUST be scheduled before that. I know you will still need to work out your own insurance, but at least the consults will be done.
    Can you get her on state assistance?
    You did NOT fuck her up. You weren't out partying it up while she was home unable to walk. You were dealing with CANCER and she has been fairly functional. Holy Shit.
    It's going to be OK. Breath and try to get those appointments moved.

    1. Kelliann, in all my angsty-rush, I didn't mention in the post that our pediatrician said we would get appointments that are a few months out but to take them and he would pull some strings to get them moved up. I am just waiting to hear if he had any luck. Our pediatrican is amazing and we love him. Except for the four year old. She had four shots last week so she hates him.

  2. Beth, if your own pedi and other professionals never suspected CP might be the cause of the fine motor skill problems at any point during the past nine years, you certainly didn't do anything to fuck her up. The state of health insurance in the US is utterly criminal. Because Josh is self-employed, he pays 100% out of pocket, just over $600/month just for himself. Granted, he uses a lot of medical services so it's not like he doesn't get his money's worth, but there is really no lower cost option for people. And employers don't contribute nearly what they used to even 15 years ago; so much of the financial burden is on the individual. And it's not like it's something you can go without. :(

  3. Once the "official" diagnosis of mild cerebral palsy or whatever has been made you may find services easier to find--most states have a children's special health fund to help cover these costs. Because her academic performance hasn't suffered, she may not be eligible for school-based services. Look at your local outpatient rehab department of your hospital. They'll most likely be able to help.

    And you didn't contribute to any problems or make them worse. Doesn't work that way. Ease up and focus on finding help.

  4. Beth, my God.
    Well, I agree with the others that you did not fuck up your kid. You said yourself - she is a happy, healthy, honor roll kid who does well in school and in life. That does not sound fucked up to me. If it does turn out to be CP or something neurological in nature, I'm pretty sure that you will do everything you can to get her support so she can continue to thrive in life. Again, that is not fucking up.

    I know there is no worse feeling than that 'oh, shit, i fucked up my kid for life' feeling but please, go easy on yourself with this. You did not fuck her up. If something very drastic was happening her you, your hubby or your pedi would have noticed already.

    Hang in there.


  5. 9??? That child should have been having multiple therapies since she was 1 year old!! Major mistake.
    Pediatric RN ( 35 years)

    1. hmmph. I've always assumed that pediatric nurses (of 35 years) know how to support & talk to families in an appropriate manner. Maybe it's time to retire?? Just a thought.

      Human, 33 years.