The other day I rubbed my eyes desperately as I realized that I was falling asleep on the mothering job:) I was sitting down on the couch to quick eat my lunch and had dozed off in the sitting position. I wondered to myself "Why are you so exhausted?". After all, I had lessons to plan for work, a house to clean, a three year old who wanted to play horsey, and in an hour I needed to pick up the other one.
Then I remembered (as if I had forced it out of thought), that I had been awoken for the fifth day in a row by our sweet Bella at 3 am. Autism sleep patterns are hard.
...."What was that?" I think to myself..."No it can't be her?"
...."Maybe it was just a thump?" Nope, she's awake....and it's 3 am again. She pounds at her door to be opened because it is locked for her safety at night. We lock it because she has escaped the home before and we couldn't sleep knowing what an escape could mean if we were asleep.
.... She is laughing hysterically, asking for her iPad. She will not fall back to sleep no matter what I give her, I know that from years of this.....I give in, I let her have her iPad, and try to lay back down...but she tries to escape every half-hour until I finally open her door and sit with her (this is the usual scenario). She's done this on and off since she was born (not sleeping), but some stretches are harder and longer than others.
A few nights ago, I was so tired from the numerous days of waking up that I didn't hear her pounding.
I woke up panicked when she started kicking at her door and I sprinted sleeplessly to her room. I walked in and she was laughing (as usual) but....something was different... it smelled terrible. My heart sank as I looked at my feet and found poop all over the floor (in numerous locations). She had pooped herself. She wasn't embarrassed and she truly thought it was funny. I looked at it and felt angry and sad all at the same time. I raised my voice and asked her "Why would you do this?"....she responded by saying "iPad" and laughed again. I'm angry....angry because she still wears diapers to sleep and she's eight.... angry because she has no understanding of self-care or that pooping on the floor is not normal.....angry because she's eight and cannot exist in the same way as a typical child. Just so angry. But even more....I am so very sad. Sad that I failed to wake up for her. Sad because she couldn't get out and I didn't help her. Sad because I can't fix autism. It's vicious.... this guilt I carry as a special needs mom.
....I cried as I scrubbed the floor at 3 am trying not to wake my three year old or my husband with my sobs and gags from the smell. "This is my life" I selfishly said to myself in my heart and...."so unfair".
It is amazing, however, how God can graciously correct my hearts perception. If it seems like I speak about disability often, it's because God speaks to me through it. He gave me this hymn as I tearfully existed this last week scrubbing fecal matter off the floor:
"My hope is built on nothing less than Jesus love and righteousness...
I dare not trust the sweetest frame,
But wholly trust in Jesus name.
On Christ the solid rock I stand,
All other ground is sinking sand...
...all other ground is sinking sand."
This is a hymn written in 1834 which resounds in my heart today....
How dare I attempt to rely on anything but Christ as my rock. Nothing this life has to offer (even the most beautiful things), can satisfy my thirsty soul. When selfishness, sadness, and despair creep in and I am tempted to ask God why, He reminds me of the why.... and the answer is always..... for His glory.
God did not make a mistake with Bella. He did not mess up. He knew she was for us and that through her I would need more of Him. For this I am desperately thankful.
He has graced me to be a special needs mom and continues to remind me that my child is a precious gift. It's a beautiful and painful existence as a Christian special needs parent. Beautiful, because the embodiment of Christ's love for us must exist between me and my daughter at all times. In the way that I love her, Christ loves us despite our inability to reciprocate that love back to Him perfectly.... He understands our needs although we cannot express them.
....He is always present.
....He is sacrificial.
....He is selfless.
....His love never fails.
....He is my solid rock
I look at the way God loves me and desire to love Bella and others in this manner. I am reminded that every "other thing" is sinking sand apart from Christ who is my rock:)
Matthew 7:24-27
24 “Anyone who listens to my teaching and follows it is wise, like a person who builds a house on solid rock. 25 Though the rain comes in torrents and the floodwaters rise and the winds beat against that house, it won’t collapse because it is built on bedrock. 26 But anyone who hears my teaching and doesn’t obey it is foolish, like a person who builds a house on sand. 27 When the rains and floods come and the winds beat against that house, it will collapse with a mighty crash.”
Beautiful reminder, Annie, thank you. The Lord is our lasting comfort indeed.
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