Friday, September 26, 2014

Grieving Gracefully. Or not so gracefully.

“Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.”

Lately I have been caught off guard by my grief. I thought I dealt with it. Ha.
Grieving is a funny thing. Okay lets be honest there is nothing funny about it. But it is odd. And gross and yucky- and I am trying to figure out how to do it as an adult. Because I have responsibilities. A job. Two kids. My kids have needs, and expectations, therapy sessions. And sometimes they need to eat. (Unless you are Shiloh, then ALWAYS you need to eat)
I digress.
So grieving. Yeah- I am trying to figure out how to do it gracefully. Is there a way? I find myself caught off guard by my grief often and it comes pouring over in the most untimely circumstances.
Our counselor suggested that I tend to wrap my grief up into a nice little package. (Yes We see a counselor- cause that's just good sense)
I wrap my grief up to end holding onto hope. However- he has challenged me to let go to Let God keep me afloat. To ride the waves of far enough to lose sight of the shore. And trust in the deep, that my faith, my Lord will carry me.
And I'm afraid.
I am afraid that in the deep I will be alone.
That the waves will pull me under and I will not be able to swim.
That when I cry out and the Lord will not redeem this huge mess. That he will not come to my rescue.

And I am trying to figure out how to do it in my daily life, without feeling so yucky. Because my grief is thick, it is sticky, and doesn't smell nice. It is heavy.

For a while we were extremely hopeful that she wouldn't have a "severe" case of TS. That brain surgery was her key- and she would be seizure free. That she would "catch up" or develop typically, or with just a minor delay. And as time progresses we are somehow surprised by the reality of where our 3.25 year old is developmentally. How our almost 14month old has passed her so quickly. And that with the return of seizures her development has haulted so quickly. And so we grieve.

So where do I even begin? Do I begin with her?

I should have a daughter who can talk, who can make up funny stories, and can sass me.
I should have a daughter who can articulate her needs. Who goes to preschool 2 days a week for 3 hours and then who can excitedly tell me she was the line leader, or that she made a friend. I should have to spank her butt for calling me a poop head- (I mean just just have heard this happens with 3 year olds).
She should want to dress up in a tutu, she should want to dance in the rain. She should be scared of the imaginary things living under her bed- and when she is scared of them, she should be able to tell me. My biggest concerns should be her bad attitude or how she treats those around her. I would worry about her having a runny nose, fever, and cough.

Or do I begin with Dan and I?
I shouldn't have to worry about missing med doses, and the consequences if I do. I shouldn't have to be sad we can't afford the school that is best for her. I shouldn't feel guilty that we don't have the resources that can give her the best. IE- Therapies, and classes that will help her learn to speak, use a fork, or pull up her pants.  I shouldn't have to feel bad for wishing she was typical. I should get to sleep with my husband more than once a week. And I should never have to say "We don't bite, hit or slap ourself" to my 3 year old.  I should get to enjoy sleeping in till 8am without fearing my child is dead. We shouldn't have to be awake more at night than asleep. We shouldn't have spent a nice downpayment on a house in the last 3.5 years on medical bills.

Because as our counselor pointed out this week, we not only grieve the disease Emmaus has. And the loss of the typical. But we grieve the life we do not have. And the loss of what "should have been".

I know this post seems yucky. And not so hopeful. But I think it is necessary to get through to the place of acceptance. And hope. And back to our reality- where pain & joy will always co-exist. They will always walk hand in hand. But I think this grieving is necessary to thrive there. And not just survive.

So for now please excuse  if this seems less than graceful. If it seems yucky. If it seems uncomfortably real or painfully raw. I assure you it is all of those things. And while our culture likes to sweep them under the rug. I will just continue to write honestly here.


Tuesday, September 23, 2014


They say a picture is worth one thousand words. 

I love this picture and it is hard to look at. Because to me it tells such a raw and personal story. It symbolizes the amazing beauty, paramount potential and Isolation that is our road with Emmaus.

She is beautiful. Standing alone, moving forward even. Looking at a vast space of potential. A space that holds many obstacles, much progress, and even danger. A place that a little girl easily could get lost if not navigated with the greatest of care.  She is brave to stand alone. Confident. And yet, what truly gets me in this picture is that she is unknown. You can tell things about her. That she is little, that is brave, and confident, you assume she is beautiful. But she is unknown. A mystery because she isn't facing the camera.

This picture wrecks me. It undoes me. Because this is my reality. I am guiding my sweet child, my beautiful girl through so many obstacles, a land of potential, yet, that holds so many dangers. And I am doing all this without truly knowing her. She is a mystery to me in so many ways. I know her preferences, but not her needs or desires.
As I guide her I am confident I am doing my very best- but it usually falls so very very short. And we end in a puddle of mutual frustration. Mutual grieving.  A place of such deep isolation. Myself as a mother that cannot possibly cure what truly is troubling my girl. A little girl so isolated in her inability to communicate or even sort through why she is upset.

Lately we have been rocking. Whenever she gets upset I rock her and sing to her. It is a simple place where I can meet her. Provide calm.
It is a sacred place where we find peace together. Where for just few minutes our inability to connect and our isolation fade away and we can just BE. TOGETHER.


Friday, September 12, 2014


Last evening at a meeting I was at a guy was talking about assuming the best in people. And he used the example of his wife. So he said “When my wife says something that grates on me, I go ahead and pre-forgive that (or basically letting it roll off his back) and assume that she stands in a place of loving me, and wanting the best for me. Not in a place to offend me.”

Lately I have had trouble believing that God wants the best for me. Not that he wants harm for me, we just have been walking through so much it is easy for me to begin to believe that because things have been so hard, that God must not truly care, that he won’t come through. And when people have been reminding me lately “God will provide” I can’t help but hear a voice in my head that says “But will he really?” 

Last night Emmaus got up at 2am. She has gotten up every night this week. Sometimes sad, sometimes hyper and happy, but last night she was angry. She was biting herself, pulling her hair, and hitting herself in the face. This is so much harder than hyper or sad.  It feels hopeless. As I lay next to her the only thing that would calm her down was my praying for her aloud. After I had prayed I started saying scriptures I had memorized to her.
The one I said most was the 23 psalm.

The Lord is my shepherd; I shall not want.
He Makes me to lie down in green pastures: he Leads me beside the still waters.
He restores my soul:
he leads me in the paths of righteousness for his name's sake.
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runs over.
Surely goodness and mercy shall follow me all the days of my life:
and I will dwell in the house of the Lord for ever.

That last part got me thinking. “Surely goodness and mercy shall follow me all the days of my life. “
In the life I am living I would say goodness and mercy sometimes are camouflaged in the middle of the night play sessions, the seizures, crazy therapy schedules, the frustration of a non-verbal 3 year old,  and money being tight.  And sometimes it doesn’t seem so “good” or so “merciful”.

I love that it says “surely” it assumes God has good planned. The author is basically saying “Well of course” or “without a doubt”.  
 And while I know God is good, loving and kind- believing that SURELY he has goodness and mercy planned in the middle of the big messy stuff we have in our lives is a reminder I needed.

Isn't that fresh air? Surely Goodness and mercy will follow me.