Grieving the daughter I’ve lost

21 Jun

I was talking to a friend after coming home from Vancouver and told her that one of the most difficult things about this epilepsy thing is that up until now, for all intents and purposes, Jade was a perfect little girl. Little kids don’t act up on purpose, they just don’t know any better. And despite there having been hard times and long sleepless months, she’s such a happy, easy-going, social child that it was easy to shrug those times off as normal developmental things parents have to go through.

But now that she has epilepsy, it’s like she’s… broken.

Suddenly, I have a child who has special needs. It’s not quite as hard as having a newborn again, but going back to the inflexible sleep schedule and the constant vigilance, well, it is a step back.  Assumptions and expectations for her future (will she grow out of it? will she have trouble learning?) are suddenly in question.

Today was kind of a rough day; Jade was emotional, had more seizures than she’s had for the last three days, was on her second full day of potty training (6 puddles of pee, 1 pantload of poo, 0 drops of toddler sewage actually in the potty) and she also had a couple of accidents (not the potty-training kind) that made me cringe.  After lunch, she somehow pulled a dining room chair over onto herself, tipping her backwards.  It would have been bad enough to have her land on the floor with a chair on top of her, but she also hit the back of her head on the wooden rocking horse when she landed.  Then, after supper, she asked for a bottle, which I gave her.  Thank God I gave her a plastic one instead of glass.  As we headed over to the living room couch to cuddle, she had a short but very strong seizure that caused her arms to jerk forward, flinging the bottle away from her.  She lost her balance while the bottle bounced off the wall and came to rest exactly where her forehead was on its way to meet the floor.  If she doesn’t end up with a black eye, she’ll at least have a lovely big bump on her eyebrow and nosebridge to show off for a week or so.

I might just add here that I am paranoid about head injuries (besides, God knows Jade’s brain doesn’t need any more trauma right now).  I grew up terrified of head injuries.  I have an uncle who, as a small child, was thrown off a tricycle by a bully; the blow to his head apparently caused some brain damage because learning became a much bigger struggle for him ever after.  Perhaps it was this that made my mom extra vigilant, but her frequent warnings made me scared to have even a little bump to the head, lest I lose a few IQ points.  In our house, we were warned to never land on our heels when jumping, because the jarring would travel up our spines and could hurt our brains; I have no idea if there’s any truth in this, but I cringe whenever I see anyone land this way.

Anyway, it was a tough day, and I decided it was a good time to make a phone call for support.  My friend Yukon Jen put me in touch with another woman whose daughter started having seizures about 18 months ago.  It was great to connect with her, although we had to keep our chat rather brief because that very daughter was asking her to do some crafts with her.  Ann was very comforting in some ways, but our conversation also made me realize that in many ways I’ve been waiting for this all to be over sometime soon, even though I know better.  That’s probably one reason today was so hard on me; after three good days with very few seizures, going backwards was traumatic.  But that’s how this thing goes. 

Another thing Ann said was that having a child with seizures changes a lot of expectations and that she’d had to grieve over that, and maybe even still is grieving.  That struck a chord with me because even though I’d told my friend that it felt like Jade was “broken”, I hadn’t thought of it as grieving something I’d lost.  The frustrations of the day came to a head and I had a good ol’ cry after we hung up.

I know I need to keep things in perspective, that there are worse things that could happen.  Ann also said that even though it’s hard to have a daughter with epilepsy, she’s glad that her daughter is with her and not someone else, because she can take care of her.  Michael said something similar last week.  At least Jade has two strong parents who can lean on each other.  Even if one is a big cry-baby after the baby goes to bed.

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16 Responses to “Grieving the daughter I’ve lost”

  1. Trudie June 21, 2008 at 11:20 pm #

    Go ahead and cry when you feel the need.
    I don’t think you’ll be a better parent if you keep “a stiff upper lip” all the time. On the contrary – trying to be heroic in the face of difficulties works fine for a while, and then suddenly it doesn’t.

  2. Marian June 22, 2008 at 12:08 pm #

    I agree with Trudie….you’d be a pretty odd Mom if you didn’t cry at times like this.
    Wish I could be there with a hankie for you! Roll on September so I can hug all of you.
    Hopefully the medication will sort itself out and Jade’s seizures will be in control.
    I’m sure Michael wishes he were there to help too.

  3. kara June 22, 2008 at 1:37 pm #

    That is good that you are building that kind of support around you. Finding other parents who have gone through the same thing I think is very important. And I think the way you are grieving, sounds important too. I bet I would be doing the same thing if I was in your place. You are one strong cookie to talk about it instead of keeping it bottled up and not sharing. I appreciated your openness and it sure does make me think a lot about our roles as parents.

    I will give a call again on Monday when we come through and hopefully I don’t sound like such a dork again 🙂

  4. Kenneth Girard Hunter Jr. June 22, 2008 at 6:19 pm #

    Oh boy, I really don’t have any advice because I have never been in this situation before (I don’t even have kids.) but I read this and figures I would offer some encouraging words. “Just stay strong and hang in there” (corny I know but I hope it helps). I think its brilliant that you are finding support with people that are going through the same things. Bonding with others has always helped me when times are rough.

  5. pisomojado June 22, 2008 at 7:04 pm #

    This is such a sad situation, but I think blogging will help you! I bet you feel a lot better after putting your words on the page?

    Your daughter is so lucky to have you – you sound like a fantastic mother!

  6. signonthewindow June 22, 2008 at 8:55 pm #

    Fawn – Thanks for the post. I have lived in and am still very much a part of a community for men and women with developmental disabilities. It’s called the l’Arche community and has been a place where I’ve learned to see the gift in those who are weak and fragile. I’ve learned about my own disabilities in the process.

    Of course I choose to be part of this community and I can leave whenever I want, something that is the opposite of your situation. But you might want to pick up some of the books written by and about our friends which you may find comforting. Henri Nouwen wrote a particularly wonderful book called “Adam” about his experience with one of our community members.

    I hope you will continue to find spaces to talk about your frustration, your anger but also about the joy and what you learn from Jade. Blessings to you both.

  7. Shannon June 23, 2008 at 6:39 am #

    It’s wonderful for you to get your feelings out, and I agree with the other commenter who said blogging will be very good for you. I think that’s very true. This will get easier as each day passes, and later on in life you will look back and hardly remember these more difficult days. You will both learn to live with and cope with her epilepsy . . . I promise.

  8. barryshapiro June 23, 2008 at 8:15 am #

    My niece was severly afflicted with Grand Mal Seizure Syndrome and experienced thousands of seizures as a child. Doctors told my sister she would never have a ‘normal’ life and recommended drugs (some that almost killed her) and even a lobotomy. No shit, they wanted to cut out a piece of her brain!
    Finally, my sister got in touch with the a group in California, I think it was called the Ketogenic Institute but I am not sur eof that, and started her on a Ketogenic diet with the help of her doctors. It was not eay but it started to have a positive effect almost immediately.
    Today, Amanda is a junior at Florida State, loves to dance and is getting ready for a career as an educator. the only advice I have is to not swallow what the so called meical experts tell you hook, line and sinker. There are alternatives out there and they can and often do work. Educate yourself and your family. She can have a wonderful life.

  9. Murray June 23, 2008 at 9:48 am #

    I’m so sorry, Fawn. I still cry about my “broken” daughter 25 years after she first broke. She functions okay, but not perfect. All parents want perfect children, but s*** happens… 😦

  10. mistiquesbest June 23, 2008 at 10:08 am #

    I think that Jade’s lucky to exist and for you to acknowledge her existence. If you wouldn’t feel bad about her being in this situation that would be the worst thing ever. Parents who ignore their children are the most horrid thing that could ever happen. Being emotional is good because it means you care. Caring is never bad and the fact that she has you to care about her is amazing. I can’t begin to imagine what you go through every single day. I’m sorry this happened to you, but the important thing is for you not to feel sorry for her. She’s probably a lively child, happy and considerate. I’ve never met her, but I can’t tell you that this is the only thing you should take into account. She’s not “Jade, the girl that has epilepsy”, but “Jade, my little girl”.

  11. washwords June 23, 2008 at 10:41 am #

    Beautifully written and felt. I’m sure your “reporting” — tears and all — will be helpful to so many. I had an unexplained seizure dizorder (ideopathic) as an infant. I took medication until I was six years old. I never had another seizure again and today I’m doing great.

    I know your situation is different and you are right in the thick of it now, but there will be light at the end of the tunnel for you and for Jade.

    p.s. assume you know you made the WordPress front page 🙂 kudos! (that’s where I found you.)

    Washy.

  12. IndyComp0T1 June 23, 2008 at 3:57 pm #

    It’s okay to cry – let it all out! A good cry always makes me feel better. 🙂 I know it doesn’t necessarily make it all better, but at least you’ve got an extremely supportive husband and a great network of friends and family to lean on.

  13. Beanie June 23, 2008 at 6:16 pm #

    You know, Fawny, I think your attitude towards the whole situation has been incredibly healthy – it’s good that you’re so open about your emotions right now and able to express them. While it may suck to go through it, a good cry always makes you feel better (at least afterwards)!

    That said, I’d just like to say that in my mind, you do still have a perfect daughter. While she may be “broken” in one sense, she’s perfect where it counts the most. She’s bright, happy, curious and has a very strong character! She’s handled everything so well, especially considering that she’s too young to understand what’s going on around her (ie. all the hospital visits and tests) or in her own body (how do you explain a seizure to a toddler?) yet. I truly believe that her loving and inquisitive nature, as well as her own strength (and that of her family) will help to counteract whatever her body might throw at her. Which isn’t to say that she won’t have bad days or ask, “Why me?” at times, but I honestly think that with all the positive energy she has inside her, she’ll work hard to try and overcome her condition and won’t ever give up. She’s going to set an admirable example. 🙂

    As will you and Michael. And he’s right, you know. She’s lucky to have such amazing parents, because you guys will never give up…

  14. shannon maccuaig June 24, 2008 at 7:29 am #

    these are all terrific comments. i know that the ONLY thing that helped me get through maggie’s 6 months of unexplained enterocolitis was knowing that other parents/babies have been through the same thing, and having doctors and dieticians specializing in this area assuring me that they’ve seen hundreds of kids just “grow out of it” and never knew the cause to begin with. however, i never actually met anyone who had this problem and often wished i had, so that i could literally look at and hold a child who made it through okay. for every single day of those 6 months i tried to fix her, and changed my diet so much so that i was actually skinnier than before i got pregnant! i was beyond miserable and indeed felt like she was broken and actually felt like i broke her. i still cry now when i think of those times; sometimes i wonder if I’LL ever heal from it even though it stopped a year ago. keep talking to people and reading stories of people with similar experiences; i think that’s the best thing you can do for your own sanity. and cry all you want, and then cry some more. oddly enough, i always feel my BEST right AFTER i cry. the release is unbelievable.
    love,
    shannon

  15. ilinap June 24, 2008 at 11:29 am #

    Oh man. I cannot comprehend the stress you must be feeling. You go right ahead and cry when you need to. Or go buy yourself a kicky pair of heels and celebrate the little girl you have!

  16. megan June 25, 2008 at 8:55 pm #

    This is a really powerful post – thanks for being so open and candid. A good friend has a son who was diagnosed with a very severe form of epilepsy at 5; she talks about having gone through many of the same emotions you’re experiencing. Just know that you aren’t alone and that there is much to be hopeful about.

    I’m glad to know that you have such a strong support system around you. Changes of any kind are such a challenge, but when your kids are affected it magnifies everything a thousand times. Keeping you and your family in my prayers!

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