Saturday, April 2, 2011


Before falling asleep last night I realized that there are very specific things that I never want to forget about this exact time in my life. I have been reading and researching alot of things lately and found that 30-40% of children who have signs and symptoms of a syndrome are still undiagnosed. Our prayer is that we will find the clues that gives us an answer to Mabel's mystery. However, when we do I never want to forget this feeling of not knowing. I don't ever want to forget about the families of those children who don't yet have an answer for what is happening in their bodies.

I'm not talking about wanting to remember medical things. I have written those out over and over and could repeat them to you off the top of my head. I could tell you the exact time, age, date that we've had certain tests and if they came back normal or abnormal. The medical has become very familiar to me, as I suppose it does when you are thrown into this sort of position without warning. As moms, especially, I find that we just do what we have to do and move on with the day...

I'm talking more about things that I'm thinking or feeling during this part of our journey-the unknowing and undiagnosed part. Someday when we know what is happening with Mabel, I may forget this day to day confusion and frustration. I never want to forget how I feel now.

For example:

Determined to find answers and leave nothing unturned.

Persistent with Mabel's care and well being.

Driven to get through each day gracefully.

Sad for the other children, for myself, for Daniel.

Angry. About alot of things. Alot of the time. At alot of people who don't deserve my anger at all.

Humbled by women who have walked this road and have so much knowledge.

Frustrated at the lack of change. Excited by the amount of small change.

Distant from the Lord.

Close to the Lord.


Distant from people.



There are moments when I am so sad. I don't know why or what has come over me but it is always there; lurking behind my spirit. The sadness rises alot because of other people and their not knowing. Comments about Mabel are becoming more frequent and although I feel like I do well at the time, later I erupt with emotion that is overtaking. I wonder when this will go away. I wonder if it ever will?

Mabel's organic acids came back normal. That eliminates some of the disorders that could have been potentially fatal during infancy. That is great news and we are so thankful! Therapy went great on Tuesday and awful on Thursday. It's just so touch and go with Mabel. I am thankful for the progress she's making and would be concerned if she wasn't making any. But she is and it's great! Both therapists said that they would now put her at about a 3 month level in her development. She started at a newborn level so we're moving along at the exact pace we should be!

...and then later that night it made me sad again because I realized that even most 3 month old's look at you...

But those discouraging moments are fleeting. Again, I'm desperately trying to live in the moment and celebrate the victories as they come! She is getting stronger physically and that's a huge improvement! We have been tracking seizures for a little over a week and they seem to have decreased but I am still charting about 2/day. The reminder of our new life happens at about 8:30 am and 8:30 pm each and every day. It wreaks of alcohol and yet my girl swallows it down without a fight. She's the sweetest pea ever and I am just in awe of her.

She's mine. I was made for her and she for me.

She is the most precious gift and although these emotions overtake me at times, I always find my way back to the truth. The truth that jumps from the Word directly into my heart and makes it's dwelling there....

"...I praise you because Mabel is fearfully and wonderfully made; your works are wonderful, I know that full well. Her frame was not hidden from you when she was made in the secret place, when she was woven together in the depths of the earth. Your eyes saw her unformed body; all the days ordained for her were written in your book before one of them came to be. How precious to her are your thoughts, God! How vast is the sum of them!"

Isaiah 139:14-17

1 comment:

Tiffany said...

Oh, Ramee~ I do not have adequate words for you. Nothing I can say will make a difference, but I pray for you daily - for your whole family. I did not realize Mabel was having seizures I missed something somewhere. praying for answers.