Special Needs

anyone in denial?

my oldest is doing well.  He has an official diagnosis of epilepsy/seizure disorder.  It's been awhile since his last seizure, and it all seems like a bad dream.  He's dealing with some sensory things now and is getting a speech eval.  Retelling his medical history I'm having a hard time admitting to myself he actually has a diagnosis.   At the same time I worry about him constantly.  I still get flashbacks to the hospital stays as well.  I don't know if I'm making sense.  I think I just needed to get this out there...

Re: anyone in denial?

  • REOMREOM member

    I hear you.

    I just rescheduled my DD's 6 month neuro appt today, and it brought back so many memories that I was trying to forget about. 

    For the first few months, I was reading obsessively about her disorder, visiting message boards, thinking 'what ifs'.  I babied her terribly.  That was no way to live.  Then I basically put it in the back of my mind, and didn't think about it at all. Now I have to face it.  Hopefully I will be able to talk with this doctor without getting upset, and find some kind of balance for daily living.

    I still freak out everytime my DD twitches or doesn't respond to me immediately. I don't think that fear, or those memories, will ever go away.

    So you make sense to me :)  Good luck with the speech eval

    DD1 12.18.06 DD2 9.18.08 DD3 EDD 5.10.2012 BabyFruit Ticker
  • Yeah, I get what you both are saying.

    I live in a weird place of reality/fear/denial.  I am really trying to embrace the mantra "one day at a time." We can't know what tomorrow will bring for any of us or our loved ones. But we can enjoy them and love them today.

    Some days I am better at following my mantra than others. ;) 

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  • I normally don't think of my kids has SN b/c they are doing so well (medical problems that were fixed w/ surgery and no current complications)

    Well this past week was kinda rough and it's been a long time since I had to deal w/ it. He was backed up and I had to give him two enemas this past week and almost a 3rd. This can be a very bad sign.

    I kinda flipped out in the car on the way home from grocery store ( I was alone) I was moan crying at the stop light.

    I don't want to go back to any of the past. I want to stay good (for him and for me,) it's kinda selfish, but I don't want to deal w/ surgeons and hospitals and insurance and hard chair beds and stress and worry and all of that and that pain and teh fear

    anyways... you make sense

    Best of luck

    Max 4-08-08 and Michael 2-03-91 (19 years olds)
    image Both boys were born w/ hirschsprung's disease, you find yourself facing this dx, please feel free to ask me any questions.
  • YEAH..Because of our schedule, it's been 3 weeks since our last therapy...It feels good.  I like our therapists, but I hate them at the same time.  I was getting used to NOT having them in our house.  We have therapy this morning, and I am kind of sad, angry that we have to have it.  I told my sister......"I'm over this therapy stuff."  I know it's never going to be over, but at times when the frequency drops I kind of go in to denial and pretent that our life is normal and we don't have to do it.  I do feel, however, that that older DS gets (and the wider the gap is between him and a typical kiddo) the harder it is to deny his disability. 

    Thanks for sharing.....I was too chicken to start this thread myself.

  • Not me since I live it every day, but DS's dad is. He thinks I spoiled DS and I prevent his personal growth.
  • PaigeoPaigeo member
    I don't know if I am in denial per se but I get what you are saying.  My DD also has epilepsy.  She had her 1st seizure at 2wks old.  Looking back that 1st hospital stay feels like a dream.  She seems to be doing well on her medication but I still constantly worry.

    Baby Birthday Ticker Ticker
  • I totally get what you're saying.  We've been lucky that so far DD's condition hasn't really had a huge impact on our day-to-day lives (the issues she will face will spring up later in life).  Sometimes its easy to go days without thinking about it.  It's always in the back of my mind and I worry constantly, but its not as all-consuming as it was at first.  But then, I also have days when I can't think of anything else.  Usually around her specialist appointments.  At her last endo appt. we found out we're going to be starting her daily growth hormone shots in September, so its all weighing pretty heavily on me at the moment.
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  • imageSobachka:
    Not me since I live it every day, but DS's dad is. He thinks I spoiled DS and I prevent his personal growth.

    I am really, really sorry about that, Sobachka. That is awful to throw this in your face....like us moms don't already drown in guilt normally. Maybe your husband would benefit from going to an ASD conference or an organized event of some sort. My husband totally turned his back-asss-wards ways when he went to a conference. Being with other parents (dads) and listening to many of them speak and share stories really opened his eyes, made him stop and take a different look at the whole thing. He's also more understanding towards DS - when he's not getting something right away or when he is struggling with socializing and such. Before, he seemed very hard on him, not taking the disability into consideration at all.

    Fathers! I tell ya!

  • Thanks Hopanka!!! Conferences are great, and I will absolutely suggest he goes to one. Glad your DH changed his ways - it is so important for both parents to be onboard!
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