Faith · Prader willi

Judgement Call

As a parents of a special needs child my emotions run the gamut. In one breath I’m laughing and in the next I’m weeping. One week I’m thrilled with a new skill mastered and the next I’m disappointed in a milestone not yet reached.

Living in the Southeast of Alaska requires us to travel on a monthly basis to provide Elsa therapy that actually makes change. This trip was not too different from the rest, just a different location, Portland. We rented a car, got the hotel, and registered for her therapy. I was excited to see her change and start to army crawl. This new skill would allow her to explore the world and help her brain grow just like her peers. One thing was different about this trip. My emotions. I was on the verge of tears the entire four days of therapy. I was trying to look professional, secure, happy, and acceptant of my daughter. All the while inside, I felt insecure, anxious, withdrawn, and disappointed.  

Therapy makes me shed my layers. It leaves me bare and raw to watch Elsa struggle. Each unsuccessful roll, not quite into crawling, almost sitting movement leaves me feeling a bit disappointed. And it is heartrendingly exhausting! As a mother of a child delays I want to cry as I watch her push a small squeal out of her curved lips. I’m outwardly cheering her on and yet at the same time secretly sad and frustrated for the lack of improvement. I want so badly to see her progress. Most sessions end with the therapist telling me what we can work on during the week. Add this, don’t do that, do this more! It’s no longer about my child. It’s about me, as a parent, a caregiver. Therapists and teachers are saying I just haven’t done enough. Not enough independent play, not enough structured play, not enough propping, too much propping, and the list goes on. Each question about foods and high chairs, her schedule just seems like a judgement gavel being thrown on my life and my choices for my kids. I know all our therapists and instructors are not heaping judgement on me but it’s the way it feels after daily, weekly, monthly sessions start to drag on. And we have so much more to go! How can I handle such disappointment and judgmental comments from robbing my soul of the joy that comes with a milestone reached?

I don’t know the answer to my question. I don’t know how to live in this world of in-betweens. After four days of intensive neuromovement therapy Elsa began to army crawl. She had the drive, she knew her target toy, and she went for it. One weight-shift to the elbow, a push from the opposite knee, her head counterbalancing body weight, and slow as a turtle she made it across the hotel floor to her favorite giraffe. Just four days and she found a new skill to master. In the hotel room that day I should have been more proud. I should have been excited and celebratory of this new victory that she was now mobile. Her face said it all when she reached her toy. A huge smile of accomplishment swept across her face, eyebrows raises, and feet kicking in the thrill of getting what she wanted. I just cried. Maybe tears of joy, maybe tears of relief, excitement, disappointment, celebration, frustration, pride, sadness.

There are going to be so many more of these moments in her life, in my life. As a parent I want the world for my daughter and fix it all for her. I can’t. The therapist can’t. We can help, but we can’t fix it. What I can be is humble and lean on the only person that can fix her. Jesus. He is sovereign, He is just, and He is patient. I can rely on Him and pour my heart of mixed emotions out, because he understands. I am thankful I can spend days in lament, empting out my thoughts and emotions to God. He is patient with me.

Jesus was humble, devoid of pride. I’m not above reading a book of only pictures slowly explaining them to Elsa. The only judgement that is being laid out is my own upon myself. What I really need is Christ’s humility, His understanding, and passion for people. He stopped for the woman at the well on his way to Galilee despite controversy and his disciple’s plea to keep moving (John 4: 1-42). Jesus slowly made is way to Jairus’s daughter hearing she was about to die (Mark 5: 35-43). And He stopped in a crowd to speak to a women faced with years of bleeding (Mark 5: 21-34). I need this, His slowness. I’m easily all of these people that Jesus stopped his busy schedule to help and heal. So is Elsa. So are you. So why did he take his time? Why did he not rush to save the girl, the woman in the crowd? It was God’s glory that was being revealed through each encounter. God’s glory was displayed for the crowd, for the Pharisee, and for the disciples. In Elsa’s journey I must keep my mind fixed on God’s glory.

Lord, thank you that this life is all and always about you. Keep me always looking for your glory. May Elsa point others to your name and may they all be amazed at what you can do when we believe the Lord.  

Psalm 16:8 I have set the Lord always before me; because he is at my right hand, I shall not be shaken.

2 thoughts on “Judgement Call

  1. Thank you for sharing your raw emotions. it is important for us to better understand but also for you to open up with honesty. Great job with Elsa.


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