Friday, May 20, 2011

levels.

This is a picture of Mabel and I from today. We are wearing our new denim-colored bracelets that were sent to us from 'The Global Genes Project.' I am honored and thankful that they chose to include us in this project even though we don't yet have a diagnosis for Mabel. The bottom line to their efforts, however, is that there are children who are affected by symptoms, syndromes, disorders or diseases that are rare and they are dedicated to bringing awareness to that. It's a great cause and like I mentioned just the other day--no matter what we find out with Mabel, I am forever connected to this. This is worth paying attention to. None of us can look away now...



I'm having a pretty hard day. I'm so tired of thinking about it, worrying about it, dwelling on it, dreaming about it and letting it consume me. But it doesn't matter what I do, something is always a reminder. Today I had to take Mabel to have her levels drawn for her seizure meds. The lady at the hospital was flat out rude, making it clear that she didn't like Mabel's name. "Well what's her middle name? What will people call her?" She then got in Mabel's face and said "well it's just kind of a big name for such a little girl...but you'll grow up. You'll grow up. It'll be fine when you grow up."



And that's all fine and whatever but for a mom who hates to think about it but has been forced to, I wanted to scream..."HOW DO YOU KNOW SHE'LL GROW UP LADY? CAN'T YOU JUST LIKE HER NAME NOW? WHAT GIVES ANYWAY?"



But that really wasn't it. She then proceeded to tell me how little Mabel was and how fragile she looked. All of this after I just said this morning how hard it is for me to know that Mabel really doesn't show me any signs that she is ever hungry. Of course I feed her, but truly she could care less either way. So I know she's little and for the record, its just another reminder that she isn't where she's supposed to be.



I had such a good week. I was focusing on her progress and some days I even felt like she was doing so good that I didn't think about all we were dealing with. And then I take her outside into the real world and the devastating reality is that people still notice. People still say harsh, cruel, unthoughtful things. The progress that I see is my reality. But to the outside world they still just see a fragile, tiny little girl who won't look at them when they make funny faces at her. I realize I have gotten past the point in this where I feel like explaining or defending everything to anyone who has a comment. Instead I give a one word answer and seem like a cold, impatient person. I'm not sure which is easier or better. I'm only sure that this is where I am and it must be part of the process.



It's safe here in our white house. It's safe with my thoughts, feelings and emotions. I woke up sad for no reason and it invaded my whole day. I was just feeling like I was coming out of that overwhelming sadness and yet it bombards me once again. It's so frustrating. I'm reading some books from the library on children with delays, disabilities and epilepsy and each book reassures me that this process is one of grief and that all I'm feeling is normal. Some days it doesn't feel normal-it just feels frustrating and it makes me angry. And not angry at the situation but angry that I feel so sad sometimes.



The sadness usually only lasts for the night as joy replaces it the next morning. It's a roller coaster and I'm holding on tight. I'm determined to ride the ride. The levels of this journey have been unsteady. The levels of Mabel's medicine have remained stable. I am thankful for both because I am growing and she is growing. We are ok.



I have to remind myself of that every day. For right now, in this moment and on this day--she and I are ok. We unknowingly bought the ticket for this ride and we will make it through it.



Scared, lump in my throat, stomach in knots, tears of fear and all. We will make it through.





" My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26



My emotions and my heart fail me sometimes. They pull at me from within. But my source and my strength is the Lord and the truth that the Word holds. I will rejoice in His portion. It is in that portion that I feel well and whole. I'm thankful for a sound, clear mind today and for the grace that I am learning to show along the way. There are lessons here and I will learn them because its the only choice I have....

7 comments:

Brooklyn said...

Ok that picture is SERIOUSLY adorable. I love it! Keep your head up lady. God's taking care of ya.

Gorgie♥ said...

Was it John Warner? IF it was...no comment! lol

Brian and Brynn said...

OOHH!!! I love this picture Ramee!!!! Beautiful ladies.=)

Bri's_momma said...

Brianna is tiny too and random people at stores actually ask me if I feed her...some people are rude & need to keep their comments to themselves!! BTW, I Love the picture!

Graham Cracker said...

You know what, she does have "such a big name for such a little girl" - you had vision long before any issues were apparent that she needed a 'big name'. I love her name and think it represents everything she'll be when she truly does grow into the beautiful young lady.

Graham Cracker said...

*into the beautiful young lady she's destined to be!

KFreeman said...

You may not be old enough to know of the show "Mad About You", but the couple eventually has a baby girl. They cannot decide on the perfect name for the daughter. Finally, after much ado, the mom names her Mabel. She chose it... M-other A-lways B-rings E-xtra L-ove. A perfect fit for your darling Mabel.