Wednesday, March 20, 2013


I first want to say thank you to so many of you who have reached out to me, prayed over our family and have been brokenhearted beside us since my post on Sunday.  

I don't want to dwell here.  
It's a place of negativity that could be very overpowering and distracting for me if I choose to let it be.  Instead, rather, I would like to throw a wildflower in my hair, pick up my sweet baby and dance in an open field with my redheads.  I want to celebrate a life that is worth living and celebrating.  The breath in my body would be enough of a reason but the love that I have for these kids, this home, this God--it's all consuming.  

Sure there is brokenness.  Absolutely there is heartache.  
There is torment and longing and a million other emotions that are running rampid through my body every second of every day.  But instead of laying down and dying, I will simply choose Joy.
The Giver has given me so much.
My sweet Nora.
She's having such a hard time.  Will you pray for her heart and for her little mind to rest?

Braden is going to be playing wiffle ball soon.  Something to look forward to!  He's excited to be part of a team with 'kids his age.'  He's so social.

And our Mabel girl...
She woke up this morning and couldn't drink her bottle.  She choked and fought me through the first few minutes until I finally gave in and gave her the rest through her tube.  She still seems to enjoy her bottle so I still give it but today the struggle wasn't worth it for either of us.  She was moving so much and her actions were frustrated [and frustrating].
She was off the entire day.
And then after her night time meds she managed to gag herself until she puked which hasn't happened in months.  Seconds later she was giggling again, reminding me to do the same.
Today I sang a familiar verse over and over in my mind:

The sun comes up, it's a new day dawning
It's time to sing your song again
whatever may pass and whatever lies before me
Let me be singing when the evening comes...

Bless the Lord oh my soul.
Oh my soul.
Worship His holy name
Sing like never before
Oh my soul
Worship His holy name...

And my evening came and went.  
With friends, food, children and dancing. 
And I did sing.  
I spun my boy around and around in our toyroom and danced with Mabel on my shoulder.  I laughed and talked and cried with my oldest daughter.  I looked at the sunlight and breathed in this first day of Spring.
  I lived today because today may very well be all I have here.  
There is simply no time to waste.

There is a peace in my spirit that goes beyond the scope of understanding; my own and everyone around me.  I can't explain it.  I only know that I asked for it in the first few moments of desperate and excruciating truth a few weeks ago.  In those first minutes and even hours the peace did not appear.  And yet over the last several days it has come trickling in to cover each and every moment throughout my day.  More than ever I can look around and know that simply because I trust in God, it is well.

Whatever may pass && Whatever lies before me...
It is well.  And I will be singing when each evening comes.


Diaries of an akward lady... said...

I read every time you write and I must say you are such a picture of strength. How you can be so open and "naked" to the world with your thoughts and experiences in life...I envy that. I pray for peace and happiness in your family.

Hillary said...

Your strength is an inspiration. You seem to have such an amazing support system, but even I, who do not know you, support you and pray for you and your littles. God bless you and your beautiful family.

Anonymous said...

I read a scripture and you came to mind this morning it talked about how often God thinks of us as precious is more than the grains of sand from someone who's gone through this praying believing in that peace like a river to overflow and flood your soul

brandy said...

Praying for your family <3

Unknown said...

Psalm 139:17-18 One of my absolute favorites. When I think of what God thinks of ME I'm overcome with an emotion I can't even begin to describe.

Mrs. RN said...

I don't read your blog often, so I have to play catch-up when I do. I wanted to share a small bit of my experience with you. My husband and I have always had ups and downs, and we have very nearly divorced at least twice. He has moved out more times than I care to count. But, these past couple of years have been really good for us. We've been together since we were 19. That being said, I remember exactly how I felt when he left, each and every time; like I had been punched in the stomach and couldn't catch my breath. Know that it DOES get better. Its easy for me to say, but hindsight is 20/20. As time passes, things -do- get better. Whether or not it works out the way anyone thought it should, who knows. But, time will help and heal. The very best thing you can do (and you know this) is to focus on those 3 little angels. From what I have seen, you are a very strong woman. You have this power within you that bursts out and shows through everything you do. You may feel alone at times, but know that you aren't. So many people have you in their thoughts and prayers, but you don't always hear from every single one. He never gives us more than we can handle, even though at times it feels just the opposite. Hold tight to your faith and your beliefs. Give those kiddos all that you've got, because that is what they will remember. Thinking of you and your redheads.

Anne Caughey said...

Hi Ramee. I lost your email address. Just wanted to write that you and your children are in my thoughts and prayers. And that while I of course do not know the intimacies of your family or your marriage, I do know the intimacies of mine and so I can empathize with the toll that Batten's disease takes on self, marriage, siblings, etc. I'll never know why some must suffer so greatly. And I admire so greatly your drive and determination to live each and every day with grace, beauty and peace. It's a noble battle and one I struggle with greatly.

Anonymous said...

Yes !!!!!!!! Ty Tanya it helps me remember IM never unworthy of His love!

Elastagirl said...

Thinking of you and sending you love and prayers.