Tuesday, May 8, 2007

Princess Grace

Grace: Seemingly effortless beauty or charm of movement, form, or proportion. A characteristic or quality pleasing for its charm or refinement. A sense of fitness or propriety. A disposition to be generous or helpful; goodwill.Mercy; clemency.
Divine love and protection bestowed freely on people. The state of being protected or sanctified by the favor of God. An excellence or power granted by God.

Because I was put in the hospital so early (21 wks) and we weren't sure what would happen with the babies, I was very hesitant to talk about names until we reached a "safe point". The only name we had been sure about, the few times we discussed names, was Grace. So, our first-born daughter became Grace Elaine. Elaine is my mother's middle name.

I now know what people mean when they say there is nothing like the love for a child. It feels as if your heart is now outside your body... the most wonderful and most painful kind of love. You feel so much joy and then so much sadness when something happens to them that you cannot control...a true sense of helplessness.

Grace seemed to always be a little behind her brother and sister. She was the last to come home from the hospital and had the most problems in the NICU. As the kids begin to get bigger and reach small milestones we noticed she continued to remain behind and did not roll over or move around like Mack and Sophie did. We worked with an OT (occupational therapist) and PT (physical therapist) to learn exercises we could do to strengthen and stretch her muscles. October 2006 we decided to have an MRI conducted to maybe shed some light on her difficulties. The MRI revealed that she has Periventricular Leukomalacia (PVL). In the simplest terms this basically means that the white matter in the brain, that affects the messages from the brain to the muscles, was damaged due to lack of oxygen. We chose not to tell anyone at that time as we didn't (and still don't) know exactly what we are dealing with. We do not have an exact diagnoses as far as the extent of CP she will have because she is continuing to progress physically.

Cognitively Grace appears to be fine (praise God!). She is happy and loves books. She is starting to get a bit frustrated because she can't do all the things her siblings can do...I think this is a good thing...she is determined to not be left behind. Last week she was casted for AFOs (ankle/foot orthodics) which will slip into her shoes. The orthodist feels very good about her ability to walk once we get her feet aligned. We saw a new doctor today that specializes in rehabilitation for CP and we will begin botox injections soon in her heal chords and thighs. This will loosen the high tone she has and hopefully help her to walk. It has been and will be a long journey for her but I feel like we are seeing some great strides and are hopeful and prayerful that the progress will continue and she will walk. We continue to do PT twice a week and OT 6 times a month.

This has been a difficult message for me to post. It is difficult to express the frustrations and helplessness Abe and I feel at times. We are optimistic but sometimes wonder if we are in denial. Whatever the case may be we will not give up on our precious girl. There are, however, times when I feel like crying out to God "Why is my daughter not normal. Why did you let this happen! Why can't she be like here brother and sister!" But then I look at my blessed daughter and I know she is perfect and I thank God for loving me enough to give her to me.


KiddoKare1 said...

She's beautiful, Jacolyn. You're right-it's hard when things aren't easy for our children, we want to fix them and it's frustrating when we can't. ((HUGS))


kellylambert said...

You are a better woman than me...I cannot even imagine how long a day is in your house. It's long around here and I'm sure that makes you laugh. My two cents...you will never give up on your own. It's not denial...it's being loyal. You are Grace's cheerleader and she will need that. Only God knows what is in store for her, but I promise there is NO penalty or detrement for loving, trusting, hoping, and/or loving her. She is your little girl...the Grace in your life. We should all be so lucky. :)

Jackie said...

Amazing Grace... how sweet the... child. She is a most amazing child and I agree with Kelly - never give up - Grace doesn't.