Feel free to skip this post and come back for the next one

1 Oct

My heart is so heavy, it drags my fingers down. Fall is normally my favourite season, but now the gray clouds just seem to oppress me. My brain feels sluggish, perhaps because it is too full. Every day I obsess, obsess, obsess over Jade’s meals, making new recipes, researching EEGs, allergies.  Every night I sleep in fits and starts, now waking to feed Halia (who by now really shouldn’t need night feeding), waking to obsess some more, waking to check the time.

We were just in Vancouver and Jade had another EEG.  It went pretty well.  Michael wrote about it here and I smiled ironically when I read it because he sounds so much more optimistic than I feel.  It’s true that Jade is doing better than before.  We’re approaching the one-year anniversary of starting the ketogenic diet (one year?!) and Jade is light-years ahead of where she was.  But I’m still not happy.  I am haunted.  I am haunted by the neurologist’s warning at our June visit, that Jade’s tonic seizures, although for now confined to sleep, could spread to her waking hours.  That would mean the recurrence of the terrible drop seizures.  This EEG showed that she’s doing better, but still having those tonic seizures. 

The neurologist wants us to go to a 5:1 ratio.  That’s as far as we can go.  It means cutting her carbs and proteins again and my very being resists the thought of it.  Her meals are already often soupy with oil; how can we cut even further back?  But, says the neurologist, every day that we do nothing, Jade loses a little more time… and her words echo in my brain.

How can I not do it?  How could we not try?  But what if we do it and it doesn’t work?  A month ago I had almost reconciled myself to the idea that Jade may never be seizure free.  Surely I should be content with 99% seizure freedom?  Surely I would be ungrateful to be asking for more than that?  But then the spectre of the drop seizures raises its head again.

Again and again I feel my confidence struck.  Two weeks ago, I forgot to give Jade the coconut oil with her meal.  The next day and the day after that, she was so spacey after her naps, I wasn’t sure that I wasn’t seeing absence seizures again.  Seizures during waking hours are something I hope never to see again.  Were they seizures?  Or just Jade having trouble waking up?

Today we were at Jade’s language therapy group and the kids all sang the Alphabet Song.  All except Jade.  She’s so quiet there, perhaps overwhelmed by all the stimuli.  I wonder if she will ever fit into a “normal” classroom setting.  I always imagined that once we got Jade’s seizures under control, she would catch up, more or less.  But now I think, I don’t know, I don’t know.  How much will she always struggle because of this?

I am grieving and I am angry and I am terrified all at once.

Then there’s Halia.  Halia, who won’t let me sleep.  (And I curl up in shame over the resentment.  This is motherhood, I tell myself.  Suck it up.  There are so many families who desperately wish they could have my problems if only they could have a child.  Suck it up.)  Halia, who keeps breaking out in rashes.  And I wonder, what is she reacting to?  Does she have a food allergy?  Is it something I’m eating that’s getting through my milk?  Is this the beginning of the trouble for her, and will I have two children with epilepsy down the road?

It may sound ridiculous to anyone outside my brain, but still I am afraid.

And the judging.  I feel it in the neighbour who continually makes comments about how we must be rich because we bought a sailboat.  (A sailboat that is meant to make up for the camping trips we can’t do with this crazy diet.)  I feel it in the anonymous commenter on Michael’s blog who tells us we’re crazy and exploitative for posting about the things we post.  I feel it in my faltering fingers when I tried to go back to a Big Band rehearsal.  I feel it in myself, for feeling overwhelmed and unable to keep up even though Amanda is here to help five days a week.  Surely I should be able to cope.

Where are the answers?  I’ve always been an optimist, but suddenly I can’t figure out how to be one again.  I feel like I am unravelling.  Heavy, I know.  I do try to keep from being so heavy here, especially for “no reason”. 

So that’s that: I’m putting myself in time out until I can at least sound happier again.

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29 Responses to “Feel free to skip this post and come back for the next one”

  1. Marianne October 1, 2009 at 6:18 pm #

    ((((HUG))))

  2. Stacie October 1, 2009 at 6:23 pm #

    Oh Fawn, I feel for you in this post… 😦

    But you’re ALLOWED to feel overwhelmed sometimes y’know, and 99% of the time you do a pretty great job of doing the opposite by not complaining much!

    And as for those shmucks who judge you… screw ’em! There are reasons people are so judgmental and critical, they’re lacking something in their own lives. Be glad you don’t have that problem! 🙂

  3. Nai-Nai October 1, 2009 at 11:40 pm #

    Big hug for your too. You alreay did a great job. Concentrate on the positive picture. Believe!

  4. geraldine October 2, 2009 at 2:11 am #

    I feel for u, it breaks my heart to read your blog. I will pray for you, Jade and Halia – Go will see u through all these. Go to him in prayer, sometimes our own efforts are not enough, ultimately it’s God’s. I am so amazed with your energy, most of all your selfless love for your children. Will always keep your family in my prayers. If this will make u feel better, my first son had imporferate anus and went thru several sugeries from day 2. My 4th and only girl had a cleft lip and got fixed on her 3rd month. This may not sound so serious but as a mom I went thru some difficulties and confusion as to why? But onlyt God knows…by hanging in to Him and reading thru the bible I found out that He will not give us trials much more than we can handle. You have a wonderful family and a loving/suppoting husband. Hang in there – u are doing an awesome job. Peace n Blessings, Geraldine

  5. laura morning October 2, 2009 at 2:43 am #

    I think you are doing a great job as a mom. I have enjoyed reading your blog for many months (I have no idea how I first found it) and have really missed your updates lately. I know times are tough now but it will pass. My eldest had severe psychological issues that took 13 years to get a diagnosis. By then she was a teen and we had to fight puberty while trying to find the right treatment and resources. It was a nightmare 6 or so years. She is 22 now and doing well. You will have a lot of rough years – I am not going to whitewash how difficult your life will be – but you can do it. Thanks for educating many of us who had never heard of a keto diet.

  6. Barbara October 2, 2009 at 4:17 am #

    My way to support you is to take apart each stressor and address it. You can do some of that yourself, too – reverse the spin downward. Don’t try to do it all at once.

    Managing the keto diet is HUGE and still provides the most hope for Jade to reach her potential (if that could be your goal over being like everyone else).

    HUGE, but not likley for.ever. Help is in the ‘one day at a time’ attitude – letting go of worry about tomorrow and the day after.

    Two other bloggers worth mentioning (and possibly reading will give you more relief than posting right now) – Katy at BirdOntheStreet and Jess at Connor’s Song. (Let me know if you can’t find them.)

    Katy just put out a call for all recommendations on food allergies. Perhaps a comment meaningful for you will come-in. Jess is dealing with a rash on Connor right now, too. She is suspecting a new toothpaste.

    I’ll stop now, but know that many people love you and want to help – many more than the jealous or poorly informed ones whom you can ignore.

  7. Megan October 2, 2009 at 5:34 am #

    Oh, Fawn. We love you and will support you. Don’t worry about the neighbour or the moron on the other blog.

    Being a mother is the hardest thing I have ever done. I often worry that I have not up to the challenge.

  8. Jenny October 2, 2009 at 6:04 am #

    Naomi quit eating hot dogs, so one more easy thing I can’t give her and I just decided to heck with it. I’m not sitting and trying to be a detective and find something she will eat. So it’s been Cheerio meal, chicken, chicken and sometimes lean meat meal. I don’t need one more thing to stress over and she’s eating all that fine. Just switching around from veg. to fruit.
    Naomi is sleeping sound, but is definately having tonics in the day time. It is what it is.
    I was extremely stressed for a while and my girlfriend said it must be bad because I’m so laid back and if I was stressed most normal people would be shooting up the neighborhood. I told her not to give me any ideas:)
    I know it’s stressful, I’m sure lack of sleep doesn’t help! I know I sleep like crap! I wake at 1 am thinking it must be at least 6 then have a heck of a time staying back asleep.
    Today, it’s raining and we’re spending the day in bed, cuddling while Daddy’s at work and brother is at school.
    Yesterday, Naomi had therapy at the special needs school and one little boy was obviously blind. His head was elongated, his facial features oddly squished to the center of his face and he was very infantile in nature. He had to be over 3 to be in the school. His mother came to pick him up and looked to be a single, teenage mother! Out of high school, or a drop out I’d say, but YOUNG! So I’m thinking, we don’t have it so bad! I have a husband, we have a better income I’m sure and I couldn’t imagine taking on all that at a young age! (I feel so bad for the little boy! I hate to be judgemental but I just wanted some perfect stereotypical mother come pick him up, not a goth chic)

  9. Cat October 2, 2009 at 7:58 am #

    I know this has been an incredibly difficult journey for you, Fawn, and for your family. We are lifting up prayers for you and sending lots of love from down South

  10. Tammy October 2, 2009 at 8:37 am #

    Fawn,
    Can you e-mail me so I have your address? I have some ideas for you. No miracle cures, but ideas!

  11. Scientific Chick October 2, 2009 at 9:20 am #

    Fawn,
    Please give yourself a break! Everyone goes through some pain, and it’s perfectly normal. No need to feel guilty about it on top of it!

    You must already know this, but the #1 reason the keto diet doesn’t always work is because of compliance issues. The fact that you’re willing to put up with all the restrictions and go through with it means that you’re giving Jade the best possible chance at improving and living life to the fullest. You need to pat yourself on the back for this! (and, in case you won’t, I’ll do it: *pat pat pat*).

    There is so much more I want to write you, but given that I’m a complete stranger and your mom should have told you not to listen to strangers, I’ll stop here. 🙂

    Believe.

  12. allmycke October 2, 2009 at 9:34 am #

    You’re doing all right girl.
    If I were your mother I’d be proud of what you (and Michael) are doing with your children.
    Give a “mental” finger to the neighbour who is envious about your sailboat and just know that you and your family have a host of supporters – all over the world!

  13. Abigail's Mom October 2, 2009 at 10:08 am #

    Fawn,

    I understand so completely everything that you wrote, and I want you to know that you are not the only one who feels this way. Sometimes for me the hardest part is feeling miserable and thinking that everyone else copes better, and that I “should” feel better. Remember –
    You are not alone. You are not crazy. You have a damn good reason for feeling heavy. Hang in there.

  14. Mike Rosenfeld October 2, 2009 at 10:20 am #

    Stay strong Fawn!!! All the work and Time you are putting in now will pay off. Hang in there and remember you are not alone.

  15. Opa October 2, 2009 at 11:17 am #

    Love you kiddo.

  16. Ripplebliss October 2, 2009 at 12:53 pm #

    You are doing the best that you can every day with the time and energy that you’ve got – and what you’re accomplishing is incredible.
    I quake at the very thought of having a second child. I can’t imagine the challenges you face on a daily basis. You have the courage and strength to devote a huge amount of love, time and energy to your family and I admire that so much.

  17. Indigo October 2, 2009 at 2:04 pm #

    Awwww, sweetie

    You choose to buy a sailboat so you and your family could have some funtime…..good for you, enjoy it. Passive aggressive neighbours – ignore them. You are young, gorgeous, talented and have a beautiful and full time family……….it is okay to be sad/mad/pissed at the stressors and uncertainties in your life. Know that we are all rooting for you and Michael and Jade and Haila.

  18. Jackie S. Quire October 2, 2009 at 3:46 pm #

    Fawn, my heart just goes out to you. Like Megan says, ignore the snide comments of others. If they had to do just a fraction of what you do on a daily basis, they wouldn’t dare let those words cross their lips.

    I’m not a mom, you know that, but I can only imagine how tiring and depleting it must be. And to worry so much about just the basic health of your children must be heartbreaking.

    All I can say is this: look how far you and Jade (and the rest of your family) have come in this past year. I’ve only been reading that long, and even I can see the difference, through your stories and your photos. Your dedication and detirmation are admirable, and don’t doubt yourself for a second 🙂

  19. Nemmy October 2, 2009 at 9:19 pm #

    Stupid anonymice… me feels the urge to track him (her)down and post stupid comments all over HIS (or her) wall. Maybe in permanent marker. That’d learn the coward…

    Did I tell you Jade and I were singing the alphabet song together at the piano last weekend? She’s got her mother’s voice. 🙂

    Big hugs Fawny… I’ve always admired you and your strength — even when you aren’t feeling that strong, it shines through.

  20. MommyTime October 3, 2009 at 5:14 pm #

    This is so hard, and you shouldn’t have to pretend it isn’t. You cannot help the nagging fear, which I think every mother suffers no matter what “conditions” her children do or don’t have. You, unfortunately, have more vivid things to fear than those of us who simply have that nameless dread that something will not be right with our children. But you should also know that we out here support you and feel for you. You are NOT ALONE. Take whatever time you need, but don’t feel that you have to wait until cheer and bravado take over before you can write again. Write what you need and what you want. And we will be here to help buoy you up when you need it.

  21. Chrisitine October 3, 2009 at 7:25 pm #

    You’re an amazing mom!!! I can’t belive it’s been a year?! wow!

    you’re awesome! and you WILL kill the beast!

  22. Kara October 4, 2009 at 8:08 am #

    What amazing comments, it leaves me with nothing to say other than I will be praying for you and your beautiful family. Send our positive thoughts all the way from our holiday across Canada!

    🙂

  23. canadianfoodiegirl October 4, 2009 at 4:56 pm #

    *hug*

  24. Peaeater October 5, 2009 at 8:51 pm #

    Still reading. Skype anytime.

  25. Lindsay October 6, 2009 at 7:20 pm #

    To me it sounds like you are an amazing mom doing the best that you can, plan and simple….that’s really all anyone can ask.

  26. Sue October 18, 2009 at 7:52 pm #

    a big sigh. It sounds like you’re out of your funk for now. That damn diet sucks, right? But it also works….5 to 1 is scary. Good luck to you and Jade. a friendly little fish named Dory keeps singing in my head “just keep swimming, just keep swimming”

    It’s all we can do.

    P.S. I waited nine months before I let my third baby cry it out at night. It only took two nights…then slept thru the night from then on.

    Mommas need to sleep, especially special needs mommas…

  27. Lori October 23, 2009 at 1:24 pm #

    Fawn, I know it’s been a while since you posted this, but having been in your exact shoes dealing with seizures, keto, and new baby, I know chances are, even with all the wonderful advice you’ve received from all those who so obviously love and support you, you will find yourself with these same feelings again and you need to know just how many people you have supporting you with words of encouragement and prayer. (Wow…is that a run-on sentence or what!?!) Too often, I felt like no one really understood how bad things are or how dangerously close I was to falling apart. Doose truly is a big, bad beast that affects the whole family. Its burden is almost too much to bear, but I’m so thankful that Jade has YOU to help her through this. Many parents wouldn’t make the sacrifices you guys have made. You make Jade’s keto meals, spend time thinking of creative new recipes to give her the opportunity to taste something different (even if it’s only the same of a pea!), you’re sleep-deprived from having a baby, when you DO sleep, it’s with one ear ‘open’ to listen for seizures, you are constantly doing medical research online, and you still have to wear all the other hats…mom, homeowner, wife, friend, etc. I KNOW how tired you are, but I want to let you know there’s light at the end of the tunnel. Evan was REALLY struggling cognitively. The docs were reminding us that he could suffer from retardation. But…we started homeschool for kindergarten this year. Each month that we see seizure freedom, we see more and more improvement. He’s already ahead of the students in my mother’s public school kindergarten. (I don’t say that to brag, just to give you hope.) And I also worry about whether or not I’ll be dealing with this all over again with Reagan, but all we can do is pray. You’re an amazing mom. And an amazing friend. You don’t know how many times I have read your blog just to know that someone else knew what I was going through. You’re an inspiration. Thank You!

    ~Lori~

Trackbacks/Pingbacks

  1. A thankful pause « Fawnahareo’s Place - October 10, 2009

    […] the dark emotions were really genuine, I’m feeling slightly sheepish for getting to such a low point last week.  I know it was a culmination of single-parenting, stressful travel preparations, and […]

  2. Unwelcome return « Fawnahareo’s Place - January 12, 2010

    […] do any more of these trips as a family, but I’d really been looking forward to this one.  Since we moved to the 5:1 ratio on Jade’s ketogenic diet back in October, I was almost sure that we’d eliminated the tonic seizures she’d still been having in […]

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