May I Have This Dance?

Sometimes I feel like, as a mom, I have these wonderful, magical powers.

Have a boo-boo?  One kiss from my lips makes it feel all better.

Crying over spilt milk?  One hug with my arms wrapped around you makes it feel all better.

Scratches, scrapes, hurt feelings, and insecurities are no match for my mommy powers.

But right now we’re battling sometime that can’t be fixed.

Vista’s brain.

Would it be ironic to say that it has a mind of it’s own?

Because some days it really feels that way.

Sept2009EEG 300x199 May I Have This Dance?We finally got her EEG booked for March 9th.  Yeah, a month away.  This will be her third and that’s 3 too many.  Believe it or not, out of all the tests she’s had in her life, these EEG’s are the worst, because it involves me holding her down while she screams and cries and screams as they attach the electrodes to her head.  After getting her all worked up, I have to calm her down enough to fall asleep.  And after sleeping for 10 minutes or less, I get to wake her up.  I end up going home after them and crying as Vista clings to Bil wanting nothing to do with me.  And I can’t blame her.  I wouldn’t like me much either after all that.

But what’s the most frustrating is that I know the test will come back normal.  Just like the last two.  So I have to put her through all that for nothing.  Or rather, so we can see the neurologists so they can tell us “Yep, everything still looks OK, other than her normal brain malformations.  We don’t know why she’s seizuring or why she regressed so much after her last seizure.”

Did I mention being a mom also makes you a psychic?

I had a long talk with Vista’s Speech and Language Pathologist yesterday as she put V through her paces.  She’s confirmed for me that it’s not uncommon for people to regress after every seizure.  It’s just something that is.  And will be forever.  As in, when she’s an adult and has a seizure, she will experience loss of skills.

I watched, as we talked, as Vista struggled with a toy that a month ago had been a breeze for her to play with it.  A toy whose ins and outs she had mastered.  Now, it’s like she’s seeing it for the first time.

It makes me sad for her.  It makes me frustrated for her.  It makes me angry for her.

And Vista is all of those things right now as she struggles to make herself understood.  She went from being a toddler who was well on her way to being at a normal speech level.  She was talking in sentences.  She was easy and clear to understand.

Now our days are filled with “I’m sorry, sweetie, I don’t know what you’re saying” and she screams the same garbled words at me over and over hoping that volume will make me get what she is trying so hard to communicate.  Words that only weeks ago, I understood perfectly.

How do you explain to a two year old that half of what she’s trying to say is now reduced to babble sounds?  You can’t.   How do you explain that even though she was able to open that door a few weeks ago, it’s going to take some time for her to learn how to do that again?

So the next couple of months will be spent trying to return her words and motor skills to her.  And trying to manage the frustration and anger, both hers and ours.

I’m hoping one day we’ll learn this dance.  One step forward, two steps back, side shuffle, side shuffle. This stumbling along, trying to figure out what comes next is making my brain and heart hurt.

 May I Have This Dance?
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34 Responses to May I Have This Dance?

  • Kate says:

    As a non-mommy, I have no idea how awful this must be for you.

    As your friend, I can be here for you when you need to talk, vent, cry, or even yell and scream.

    I’m not too good at knowing what to say when bad things happen, but I hope that, if nothing else, you know that I am, and so so many others are, here for you and your family.

    Jenn Reply:

    @Kate,

    Thanks Kate. Just saying you’re there as a friend is the best thing you could say.
    xoxo

  • Karen says:

    Thud…. That’s my heart, sinking for you. I’m so sorry that you, Bill and most importantly, Vista have to struggle through frustrating tests, regressions and seizures. This just sucks. I can’t imagine having these things happening to me as an adult, let alone as a small child. Her frustration level must be through the roof. All I do know is that she couldn’t ask for stronger advocates or better parents than the two of you. It may not always feel perfect, but you guys are doing a great job. xo.99
    .-= Karen´s last blog ..Wordless Wednesday – February 17, 2010 =-.

    Jenn Reply:

    @Karen,

    Thanks Karen. I appreciate your support so much.
    xoxo

  • Lisa says:

    Ugh, Jenn, I’m so sorry. I can only imagine the frustration both you and Vista must be feeling. As a mom of a toddler I know the normal frustrations and my heart breaks to think of the extra frustrations and struggles you are going through right now.

    Love and hugs sweet momma.
    .-= Lisa´s last blog ..Common Bottle Prep Mistakes and The Fixes =-.

  • Colleen says:

    Oh honey… I am so sorry. My heart hurts for you. I wish I was there to help you. You are an amazing Mother and I love you!
    .-= Colleen´s last blog ..Give Us Gold =-.

    Jenn Reply:

    @Colleen,

    Dude if you were here, you’d be so sick of my whining you’d be holding a pillow over my face. lol

    But thank you and I love you too.

    xoxo

  • Amanda says:

    Jenn – I wish I could give you a big hug right now and somehow everything would be back to being the same as it was before.

    Can Vista still sign? I’m thinking you have thought of every single thing that would help but I feel so lost, mad, and frustrated that I just wanted to see.

    Hugs and one of those ginormous wine glass to you.
    .-= Amanda´s last blog ..Talking’ Valentines With Girl Talk Thursday =-.

    Jenn Reply:

    @Amanda,

    She *can* sign, but won’t, because she can talk and expects you to be able to understand her. I’ve been trying to get her to go back and sign some stuff in tandem with speaking, but even that’s limited.

  • Jenn, I am so, so sorry for Vista, for you, for Bil… and sorry just doesn’t fucking cut it, does it?

    I *know* how frustrating it is, believe me – Blythe started seizing at 2 months and her (expletive)HMO doctor didn’t do a damn thing to help us.

    All I can say is, push. Push to make them find other things to test for, push to find doctors who are curious about what makes her tick, push to make sure the ones in charge of her care are looking at every. single. possibility, not just the ones that are staring them in the face.

    Blythe’s seizures stopped when we removed corn from her diet. This, after 8 months of begging doctors to help me find out what was wrong with her, 8 months of my infant going from sitting up on her own to not being able to hold her own head up, 8 months of them giving me absolutely NO helpful answers.

    Push them, hug her, have a glass of wine. That’s all the advice I can give. Much love to you, sweet and lovely lady.

    Jenn Reply:

    @Andrea’s Sweet Life,

    Corn made her seize? Really? Wow… I didn’t even know food allergies could do that. Did you ever have her tested for for a corn allergy or is it something you just figured out yourself?

    I’m thinking I might put in a call to our geneticist too and see if there’s anything else we should be testing for on that end.

  • I still just have no idea how you do this and keep up with everything else. You completely inspire me and you are truly a great mom. I hope things get better and V finds her words again.

    Jenn Reply:

    @Becky @TheRealBecks,

    Like anything in anyones life, it’s a balancing act ;-)
    (which translates into: My house is a freakin disaster and I forget to put on makeup most days. lol)

  • Kekibird says:

    You are an amazing mother. V couldn’t have lucked out better. Getting you as her mommy (and Bil, too!) is a blessing. Keeping you and yours in our thoughts.
    .-= Kekibird´s last blog ..Wordless Wednesday #25 =-.

    Jenn Reply:

    @Kekibird,

    Thanks sweets. Your kind words mean so much.
    xoxo

  • Heather says:

    Have you asked them to sedate her? They totally knock Jack out, stick the electrodes on, then wake him up. Throw a hat on, and we’re set. Granted, it’s not the greatest experience in the world, but it’s much more tolerable than holding him down. That’s inhumane (and they’ve been through so much, give them a break, you know?).

    Anyway, that’s my 2 cents.

    Always close in thought and prayer. Always.
    .-= Heather´s last blog ..Renee’s Baby Shower! =-.

    Jenn Reply:

    @Heather,

    Yeah, we’ve asked and they’ve refused. It would be so much easier if she was out for it. But I guess they don’t want it interfering with her sleep patterns or something. Which sucks because it’s totally traumatizing for everyone involved including the nurses

  • I don’t really have much to say, it just sounds awful. I’m sorry for her, I’m sorry for you. I hope you get some kind of answers soon.
    .-= C @ Kid Things´s last blog ..Good Times =-.

  • Jodee says:

    Oh I am so sorry… My heart hurts for you and V… I can’t imagine how frustrating for you and her that must be…stay strong I know you and V will get through this. big big big big (hug) xoxoxox
    .-= Jodee´s last blog ..Honest Blogging =-.

  • andy says:

    I don’t have much to say either. I’m sorry you are having so much frustration with her speech right now.

    hang in there.
    .-= andy´s last blog ..What am I? Reveal =-.

  • I’m so sorry. I know that’s not much help.
    I just wish I could “fix” that beautiful little girl for you. I wish I could, at the very least, make it less traumatizing for you guys:(
    Where’s a magic wand when you need one?
    .-= thepsychobabble´s last blog ..GTT: Olympic-Style =-.

  • Issa says:

    I can’t even imagine. Sigh. Hugs Jenn.

  • Beth says:

    That has to be so hard and frustrating! Just take it day to day mama, that’s all you can do. I will be thinking of you and yours. Light and love.
    .-= Beth´s last blog ..Aperture, a Bloggography Tutorial =-.

  • Vixen says:

    With Ladybugs issues, you know I understand how you feel. All I can say is each day is a gift, a wonderfully unpolished gem, that I wouldn’t trade for anything in the world. As difficulties arise, the urge to scream never lessens, but you are a good and strong mom. You and V and Bil will get through to another day/another gift.

    Many hugs to you and to V.
    .-= Vixen´s last blog ..“Oh, you mean like a sleep-over?” “Yeah.” “Well, OK….but I get to be on top.” =-.

  • jenn says:

    Oh Jenn, my heart breaks for you all. As a mom, I can only imagine the heart wrenching feeling of watching your child struggle, and hurt and not be able to fix it. I am so frustrated for her! I wish there were something I could do, some advice I could offer like you did me (by the way, you relieved a lot of frustration and hurt I had b/c my baby was sick) I pray that one day there is an answer, a fix..one day Vista will not have these frustrations. I want to just grab you both and hug you tight. Love ya! xoxo and Im here if you want to rant and rave and yell and cry ;)

  • Michelle P. says:

    hugs

  • Lu says:

    I am sorry you guys are gong through this. I t REALLY makes my wish I had a magic wand. You and Bil are amazing and dedicated and you will get her there. V couldn’t have better parents advocating for her. I can only imagine what it take our of you. You are a wonderful mama and I REALLY hope they figure out the cause SOON. xoxo
    .-= Lu´s last blog ..My Story Part 8 I think… =-.

  • Nicole says:

    Sweetie HUGS HUGS AND MORE HUGS…….. I wish too that I had a magic wand to share with you. Keep sharing, talking and letting us all know how you are feeling. Let us give you the support you need. Many of us probably are sitting typing to you thinking what do I say what can I do….. WE ARE ALL HERE FOR YOU LET US BE!!! LOVE YOU!!!!! Hugs to you and Bil and most of all to Vista!

  • I’m sorry you and V have to go through all of this. V is so lucky to have such an amazing, strong mommy and advocate. I wish I too could be closer to you to support you when things get frustrating and overwhelming. I hope you can some well deserved answers soon!! HUGS.
    .-= Maria @BOREDmommy´s last blog ..Best. Commercial. Ever. =-.

  • *sobbing* for you while i’m reading this over and over… i want so badly to wrap you in hugs and words of encouragement, but in reality (fucking reality) i can only offer virtual hugs and write you about how much life sucks sometimes. i’m sorry jenn. my heart is heavy for you all. i will try and be more positive in my comments because i’m sure the positive energy is what is needed right now… but at the moment, i’m just sorry. genuinely sorry and aching for you.
    .-= nic @mybottlesup´s last blog ..thank you, maggie =-.

  • punkinmama says:

    Wow. I can’t imagine how difficult all of this is for you. I wish I could do or say something to make it easier. Love you!
    .-= punkinmama´s last blog ..sunday reflection; valentine’s edition =-.

  • angi says:

    It’s all been said to you above, but I couldn’t read this post and not tell you that I think of you and V every day. I send thoughts of peace and growth to your family all the time. I am inspired by you as a writer, a mother and a woman. I just wanted you to know. *hugs* to all of you.

  • This is my first time commenting but I’ve visited before. I’ve always been in awe of your grace under pressure and your abililty to live a life that I can’t even begin to understand. But this post just breaks my heart. I didn’t know that little Miss Vista regressed after her seizures. My prayers go out to you.

    Jenn Reply:

    @PinesLakeRedhead,

    Thank you so much. That’s so sweet of you to say.

    This is actually the first time we’ve seen her regress like this. It may be because, in the past she really didn’t have the skills or language that she does now, so there wasn’t as much to lose. Luckily, she enjoys the activities and exercises we do to work on her skills, so that makes bringing her milestones back up a lot easier.

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