Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Are We There Yet?

on June 7, 2012

Have you ever heard the expression, “Getting there is half the fun”?

I beg to differ.

In my experience, “getting there” is often fraught with stress, inconvenience, discomfort, delay and total aggravation.

(Lost luggage, anyone?)

Now that we’ve made the decision to go forward with Joss’ surgery, the wait, the “getting there” part of our journey, seems interminable. If you’ve ever circled the sky above an airport for over an hour waiting to land or sat hypnotized in a car on an endless stretch of highway, staring at a never-changing landscape of nothing but trees, trees and more trees, you know what I’m talking about.

I’m scared of what the future holds. It’s frightening, unfamiliar and full of peril.

But to creep toward it this way,

so

agonizingly

slowly…

it’s torturous.

Fortunately, Joss’ medication seems to be helping her somewhat. Her seizures are fewer in number now than they were a month ago and less severe. Sometimes, days go by with her being apparently seizure-free. (Even then, she may still be suffering from “silent seizures” that we can’t see.) On those days when she’s happy and smiling and appears on the outside to be perfectly healthy, our hopes go up and some delusional part of us begins to think, “Maybe she’s getting better and we won’t have to go through with it!”

But then this happens:

I hold her as the seizure runs its frightening course; rocking her and stroking her hair, not even sure if she knows that I’m there but hoping that she can at least sense me. And when the seizure has finished scrambling the electrical activity in her brain and racking her little body with violent jerks, she looks up at me, her beautiful blue eyes brimming with tears, her chin covered in drool, and she  pleads with me silently to make it stop.

“Please, Mommy. Please make the seizures go away!”, she begs.

And I can’t.

I fail her every time.

That seizure is followed by another,

and another,

and another…

I don’t want to fail her any more.

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14 responses to “Are We There Yet?

  1. Debbie says:

    EVEN at the worst you did not fail her!! Sometime love is holding someone while they hurt, sometimes its just trying to bear the burden for them. Sometimes, (as I have learned through this) its being agonizingly helpless..but LOVE never fails!! HOWEVER, hope looms ….. Love without the pain is in the future..and one day at a time it draws near!!! And you shall provide for your princess; her rainbow!

  2. Tina Miller says:

    Oh Jennifer. I had no idea what you were going through. Made me cry. I have never seen these before. Praying for you both through my tears. I am so sorry you are both going through this. I pray for a miracle for you. Lord please make a way where there seems to be no way. Help this precious baby get the care she needs quickly and Lord lay Your healing hand on her. I pray that You would comfort Jennifer and ease her fears as only You can. Give her the strength she needs to get through this season. Help them Lord. Amen

    • 5thmonkey says:

      That’s a beautiful prayer, Tina! I am praying in agreement with you and am so grateful that so many wonderful and thoughtful people like you are walking beside us on this journey!

  3. Tammy says:

    I just wanted to say that you have to be the strongest person ever. You inspire me to be a better mom to my girls and to thank god for them everyday. I truly hope and pray that your baby girl comes through this with flying colors and in my eyes you are in no way a failure to her but the love and strength that she needs to fight this.

  4. Christine F. says:

    Just following Joscelyn’s journey breaks my heart. I’ll continue to pray for both of you. I hope Joscelyn’s seizure will end so soon just like the boy in this You Tube video. http://youtu.be/3hg3YF3KSEU.

    • 5thmonkey says:

      Thank you for sharing that video with me, Christine! We’re so grateful for these kinds of encouraging stories! They do a great deal to help to lessen some of the fear and trepidation we feel about her upcoming surgery. Thank you so much for your continued prayers!

  5. giazzpet says:

    You know you can get through this as you are one tough cookie and so is Joss. The surgery is coming up soon, so don’t give up hope. I send you lots of love and hugs from afar!

  6. Sue Compton says:

    It seems that one of the worst feelings for me has been to watch others suffer and not be able to help. It is especially difficult to fathom how that might feel repeatedly on a daily basis in dealing with the inability to protect a child! In such a space, it then becomes important to be there in any way you are able…to listen, struggle and not allow that person to be alone. Even you preparing her doll for surgery…you are doing that!

  7. Linda S. says:

    Joscelyn’s being and the “grace” you offer in rocking and being with her as this unfolds is a powerful force in breaking open my heart further and further. sending love and light . . .

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