Monday, June 6, 2016

for tonight.

I have nothing good to write. Nothing positive. 

I feel really bad since so many people have hope for Sunday and are praying for a miracle, but right now I have no hope. I don’t even have the faith of a mustard seed right now. 

It brings me to tears and hurts my heart. 

I don’t feel this way because of some Mommy intuition that has let me know that Sunday’s heart has stopped— I have this feeling because before going to another doctor for a second opinion three weeks ago, I was sure with all my heart that I was going to walk into that appointment and they were going to tell me she was getting better. That there was an improvement. A miracle starting. 

But that’s not what happened. 

Actually, the complete opposite. In fact, she was worse. Not only was there fluid at the back of her head and neck, but now it was inside her entire torso as well. I was devastated. Disappointed. Broken. 

There were other things he saw, but wouldn’t investigate with the ultrasound since he felt the biggest problem was the hydrops. Not why her leg was pinched. Or what her heart looked like. And so on. 

Even though I believe in Jesus, and know that God does perform miracles. It’s still hard. I know where my trust and hope lie, but sometimes it isn’t always so easy to walk in it. It’s there in my brain, but it’s not in my heart. 

When I share this with Chris, he tells me it’s alright, that he has enough hope for the both of us; And that it’s understandable that I would feel this way on some days and that’s why he’s believing for the both of us. 

Ecclesiastes 4:9-10  Two are better than one… For if they fall, one will lift up his companion. But woe to him who is alone when he falls, for he has no one to help him up.

So even though I want so badly to go to my heartbeat appointment tomorrow and the perinatal doctor on Thursday to get an update, I’m scared. Scared what bad news I’m going to hear. 

And even though it’s my daughter who needs her Mommy to fight once again for a miracle, it’s me who also needs one to find my hope again.


Jo said...

Sometimes it's ok to let other people carry you. Wake up, get through the day. If that's all you manage that day its ok. It really is.

Jill Funkhouser said...

Praying for you dear friend...we love your family!

Vivian said...

In Christ Alone
Natalie Grant
In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.
In Christ alone! who took on flesh
Fulness of God in helpless babe!
This gift of love and righteousness
Scorned by the ones he came to save:
Till on that cross as Jesus died,
The wrath of God was satisfied -
For every sin on Him was laid;
Here in the death of Christ I live.
There in the ground His body lay
Light of the world by darkness slain:
Then bursting forth in glorious Day
Up from the grave he rose again!
And as He stands in victory
Sin's curse…

rest on these of my favorites.
sending love and prayers for comfort.
Vivian xoxo

Elicia Gregg said...

My daughter, Sarah, was diagnosed with an autoimmune disease 3 years ago called NMO. It is similar to MS except that it kills 33% of people within 5 years of diagnosis. My daughter was 8 when this disease reared its ugly head. Sarah is now blind and is numb in her left leg from her knee down. Her first year of dealing with this disease she was in the hospital just about every month as doctors tried to find out what was wrong with her, and then how to save her eyesight. It is the hardest thing I have ever gone through. There were days, like the ones you are experiencing now, that were darker than dark. I felt like I couldn't see the light at the end of the tunnel. It was a scary place to be. I will never forget that darkness as I am sure you will not either. My husband, just as yours is now, carried Hope for the both of us when I felt its absence in my heart and soul. And then slowly, Hope returned, and I carry it with me as a beacon of light - not that everything will be the way I want it to be with Sarah, but as a reminder that God will carry me through whatever I need to be carried through and that somehow I will find a way to learn to accept all that was/is happening to her. I tell you this story not to draw attention to myself, but to help you understand that although there may be times when you feel that you alone in your hopelessness - you are not. Darkness and hope are universal to us all, but there seems to be a special darkness and (more importantly) a special Hope for those of us mamas and daddies whose children are enduring unspeakable things. I think of your sweet Sunday every day, and I will carry a bit of Hope for you until you can find your way back to it again.

Nikki said...

We totally understand the mama pain you feel in your heart. Praying for peace for you as you have to endure such hard times right now. Wish we lived nearer so we could at least make you a meal . Know that we continue to hold you up in our prayers.