Remember the way you used to watch your infant as they soaked in the bath, conscious of the water level, the temperature, and the amount of shampoo or soap they had access to (as they may dump or drink it)....that's me, with my precious nine year old who has autism. I left the room the other day and she had turned the water so hot that her skin had turned purple, but she didn't make a sound and just sat there motionless as I frantically scooped her out burning my hands in the process.
....I grab the soap, and demonstrate how to put it on a washcloth and lather. I place it into my child's hands and she looks confused. I show her how to clean herself and she tries to copy, but doesn't understand the concept. Soon, she begins to sing her favorite song and drops the wash cloth into the water washing all the soap off.
....I lather my hands with shampoo and conditioner and place them into her hands. I demonstrate how to move her hands around her head so the lather reaches every surface. I then place a bit into her hands to see what she does...she pats her head once and begins to laugh then dumps all of shampoo from the bottle into the water as she sings the same song as before and looks off into space.
....she is 9, and we have done this a thousand times, and never yet succeeded. But tonight it didn't make me sad or disappointed. I looked at her happy little face as she sang her favorite song and was thankful for her joy. Weird I know.
It's so strange how God can fill me with little deposits of joy in times where I know I should be tired or broken from seemingly repeated failures. I often feel completely lost as to how to help my daughter care for herself. The statistics don't lie, she will outlive me. The thought of this is too overwhelming to continue discussing. It's why we have tried a THOUSANDS TIMES to get bath time right. I want to break through the barriers of autism so that I can control the outcome. So that my child can grow to have ANY FORM of self sufficiency. I want this for her future and for my tormented momma heart. Friends.... I simply can't control autism and I feel like God keeps placing Psalm 139 in front of me as a precious reminder of His plan for me and my family.
I have highlighted the parts of this passage below that shout to my soul.
I could cry.
We are so loved. Bella included....
Psalm 139
Search Me, O God, and Know My Heart
O Lord, you have searched me and known me!
2 You know when I sit down and when I rise up;
you discern my thoughts from afar.
3 You search out my path and my lying down
and are acquainted with all my ways.
4 Even before a word is on my tongue,
behold, O Lord, you know it altogether.
5 You hem me in, behind and before,
and lay your hand upon me.
6 Such knowledge is too wonderful for me;
it is high; I cannot attain it.
7 Where shall I go from your Spirit?
Or where shall I flee from your presence?
8 If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
9 If I take the wings of the morning
and dwell in the uttermost parts of the sea,
10 even there your hand shall lead me,
and your right hand shall hold me.
11 If I say, “Surely the darkness shall cover me,
and the light about me be night,”
12 even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.
Or where shall I flee from your presence?
8 If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
9 If I take the wings of the morning
and dwell in the uttermost parts of the sea,
10 even there your hand shall lead me,
and your right hand shall hold me.
11 If I say, “Surely the darkness shall cover me,
and the light about me be night,”
12 even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.
13 For you formed my inward parts;
you knitted me together in my mother's womb.
14 I praise you, for I am fearfully and wonderfully made.[a]
Wonderful are your works;
my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
you knitted me together in my mother's womb.
14 I praise you, for I am fearfully and wonderfully made.[a]
Wonderful are your works;
my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
17 How precious to me are your thoughts, O God!
How vast is the sum of them!
18 If I would count them, they are more than the sand.
I awake, and I am still with you.
How vast is the sum of them!
18 If I would count them, they are more than the sand.
I awake, and I am still with you.
"Annie, this word is FOR YOU"
"Annie, I have hemmed you in (you are secure in me and always will be)
"I created your children and they are perfect...Bella's frame was not hidden from me when I created her and planned her days WITH AUTISM before she came to be"
"When Bella wakes you up each night at 2am, I am with you..... every time"
I just had to share this as I feel like so many of us (myself included) forget that God's word is living and active. We go about our days searching for things to fill us up with joy and find that nothing seems to quench our thirst. If there is one thing I have learned as a parent of a child with life long disability, it is that God cannot be replaced. WE CANNOT LOOK TO OUR SPOUSES, CHILDREN, OR CIRCUMSTANCES FOR LIFE GIVING JOY. They will fail us a thousand times over.
Now, go fill yourself up in His Word.
Hugs.
