Sunday, July 20, 2014

She smiled and said "mama"

Taking care of a child who shows little emotion, is not able to talk, make eye contact or interact with you can be a thankless job. Changing diapers on a 7 yr old is NOT fun, personal care is time consuming.  A very big 7 yr old who on a good day helps you by pushing her arms through her shirt sleeves and sings to entertain you and a bad day sits silent as a lump on her wheelchair is not always easy. She gets bigger and bigger, her care gets more time consuming and the reality of long term care weighs heavily. 

I am not complaining. Just stating facts. I love Nesiah and she has been one of the greatest blessings in my life. She has a sweet, uncomplaining spirit that is always pleasant to be around. She is easy going and goes with the flow of our craziness. She is truly a pleasure to care for and I consider it a pleasure to do so.

In the last year I, as a mother, have been stretched to new heights in various ways. I have faced some pretty big adjustments in parenting... Many days I pray that God would fill the gaps where I don't reach. (and he has even provided me with willing people to step in and help as needed) 

I have struggled with giving it up to God, knowing He called me to this. But get this, despite my "weaknesses"  in the last year, Nesiah has learned so many new things. She has learned to crawl and pull up. She has learned to "ask" for attention, in some good ways and in some bad ways... She has slowly pulled out of her own little world. She is doing amazingly well at school and learning things I never thought she would. She is eating a lot of food by mouth. She is working on potty training..

Best of all, she is learning to show more emotions, more  then just happy and sad. She notices when people talk to her. She even makes eye contact occasionally with her special people.   She grabs toys from siblings and fights to hold her own. She knows when she is playing rough and that I will stop her when she does get carried away. (she tries to do things when I am not in the room) She understands "no" and "stop that" and "I love you".

I have felt great guilt because I can't provide everything she needs here at home. She needs school for therapy. She needs school for stimulation... The negative aspect of school, she was gone from 8 to 5, 4 days a week!!! AGH! Evenings were harried and crazy, so there was def not a lot of one on one with mom and I felt I was losing my bond with her.

I have been working on spending more time with her. Being intentional for the past 2 months. But still often failing.

Everywhere we go, we get comments on how she has changed. She has started repeating words and several times now has spoken spontaneously.

Most of the time when I am feeding, dressing, changing her I am multi tasking, giving attention to a second or third or even a  fourth child while caring for her. She just lets me do my thing and we move along, I do chat or sing to her but generally not intentional conversation. She never responds much or ever makes eye contact, just lets me do my thing.


Several times today I noticed that she smiled directly at me when I talked to her. I wasn't sure if this was intentional or not..

Tonight I went to get her out of her chair to move her to her bed. 

As I walked up to her I said "Ok, girl are you ready for bed?"

She made eye contact, reached for me and said MOMMA, MOMMA... (she has never ever said momma in a purposeful way, even tho she HAS said it when she was away from me. )

I smiled and giggled at her, Girl, you said Momma! You are so smart!

She grinned back at me as I interacted with her, holding eye contact and her full attention!!!

I lifted her and carried her to her bed, chattering at her and put her down. She said "Momma" again and reached out to touch me!!"  All while giggling and laughing with me. Interacting with me, without shutting down for more then 3 minutes!!

It's the little things that melt my heart..
Her first name means "the father rejoices" and her middle name means "miracle". I gave her that name because I believe God will work a miracle in her life.
We praise God for His healing touch on her life!

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