Wednesday, April 4, 2018

Connecting over Comparing



Dear Prayer Warriors, 

As I watch and interact with Anna it has become clear to me that she doesn’t compare herself to anyone else. If Anna spent her days comparing herself to her brother Simon, i think she would live discouraged by everything he does that she doesn’t. Instead she evidences sympathy. When Simon cries a brief, hasty tear about not getting yogurt for dessert, anna will join him with an immensely sad trembling lip, crying inconsolably for minutes.  No matter how frivolous Simon’s crying is she will join him with heartache. Anna longs to connect with others not compare herself to others. Another example is when we laugh out loud because silly is commonplace around here, Anna will join us with her slight delay. There is a desire for inclusion in her. 

Comparing can be helpful at times for parents, therapists, and doctors in medical decisions. My desire is for real connection with Anna before comparison. I have come to a point of distrust in the Individualized Educational Plan (IEP) because of the lack of connection and the excess of comparison. There is an IEP tension between what people think Anna should do and what we feel she loves and is curious about. 

The assistive communication devices are the flagship for the point I’m making. Week after week we go to a therapy center and get home bound services so that a professional can assess if Anna is bumping a button with the side of her head intentionally or not. To me it is completely not conclusive, and she is proving to be inconsistent at best. The therapist insists that we need to be identical in speech, tone, and timing when presenting choices to her so Anna’s mind can choose for herself. Anna cannot hold her head up intentionally and now we are asking her to carefully tap a button? She has cerebral palsy which means that her neurological system makes her body misfire (do movements that are uncontrolled) frequently. Anna is communicating, not through a button or a monitor. Maybe older forms of communication need to be explored. 

So we need prayer. We want Anna’s days to be filled with communication so that she can connect with others not like her, with people who want to be with her rather than try the latest technology on her disabilities. That is why we love our night nurses, they are trying to be gentle and understanding of her. Whereas teachers, therapists are more of the mindset of what can I do to help her make her milestone, so they throw the books at her.

I dream of Anna also connecting daily in spiritually enriching activities. Where praise songs and Bible readings are in the air daily. A place God is encountered and depended on. Where healing isn’t the bottom line, rather the hunger is for the manifest presence of the Holy Spirit who points to Christ and the fullness of every spiritual blessing is found always. Healing is the manifest presence of God but so is His peace, and patience, kindness, gentleness, meekness, joy, love.

Where are the Special Education Christian Schools? Where is a lab of biblical faith for the disabled? Where full healing is imminent because the manifest presence of God is there. Is there a school where the tuition is paid for in prayer, fasting, and in believing God for things not seen of yet? Where Anna is educated by familiar, loving relationships with people are Christ’s ambassadors. Where research, and counsel for medical decisions are bathed in prayer and waiting on God?  


 Please pray for:

-Anna to grow close to children her age that show a desire of friendship with her
-us as we increase intentional interactions to “play to her strengths” of connecting and engaging
-Anna’s full healing through Jesus Christ because He is our life
-God’s grace to bestow growth and learning for Anna however traditional or unconventional it may be
-open doors to therapy centers/ therapists that believe God is using their gifts for His kingdom
-Anna to sleep through the night with the CPAP machine and mask, 
-the denial or approval needed to move forward on getting a ramp van
-an increase in date nights for Lindsey and I 
-the medical decisions we face about upcoming surgery possibilities regarding a separate j-tube port, and the reflux surgery
-clear direction about amending the communicative device therapies, what are other avenues of communication 
-Anna’s increased ability to engage her surroundings with her fine motor skills and vision
-a supernatural halt of Anna’s tendency to chew her wrists
-the Word of God  and the ministry of praise to be sweeter than honey to Anna’s heart, mind, body and soul

Very Thankful for your powerful prayers, 

Nic, Lindsey, Anna, and Simon