Amid Ability and Disability

Dear Prayer Warriors,

Christmas is a time of thanks for the gift of Jesus. He is the gift of grace, redemption, healing, regeneration, and eventually glorification to sinners. Alleluia

I will drag my index finger across a row of chimes carefully to engage Anna in sound and then Simon attempts to repeat my gesture, after about fourth chime he grabs them all and starts tugging. It’s a grace to see Simon explore the ability of his fingers. Simon is exploring the octaves of his screams too; Anna’s left quiet, teary, startled. My son will crawl straight to the toilet bowl because he has the ability and memory of every water exposed place in the house.

There is this interplay in my home between the constant activity of Simon and the immobility of Anna, ability and disability, independence and dependence. It may be heartbreaking to outsiders, it certainly is a demanding dynamic, however all this is a grace opportunity to see the Almighty more clearly. I’ve never had to open a book to grasp the neurological complexity of the human body and mind because Anna and Simon show me. I’m filled with wonder about God’s infinite wisdom to create a brain that commands thought, able hands, legs, and feet. Even more miraculous is the minimal training and equipping it takes to teach an able bodied child a motor skill.  

We are currently teaching both kids to walk right now. Simon is on auto-grow compared to sweat-and-tears Anna. There is progress in both kids and joy to behold. The teaching part with Simon is more external, making our home safe, giving him an assist, and a smiley target to walk to. Then on his own he can stand up, boldly wiggle his legs and laugh about the fact that his legs are working. With Anna the teaching is at first internal we need to break the tone/spasticity, stretch, put on her equipment, and then from routine to remind her that it is good and normal to be weight bearing.

I recently revisited a book (on tape) about the biblical model of parenting. The thrust of the book is how parents are actually accountable before God for the gift (their kid) that He gave us. “Train them up in the way they should go.” It made a whole lot of sense when I was thinking about Simon, I have to guide his choices, call out sin, impart wisdom, and show him what it looks like to abide in Christ. This is teaching by example and explanation. Then outta nowhere it hit me I started weeping; I know Anna has excellent cognition however she is currently non-verbal and immobile. All the application points of the book seemed null and void until the Lord furnishes His full healing. So I asked God “What are you asking me to do with the gift of Anna? Tell her not to play with matches? To look both ways before you cross the street?” I don’t often get sarcastic with God but this thinking just surfaced -it’s not funny to Him.

As I rested my case, calmed down, waited, and asked God for what I’m accountable before Him for regarding Anna. The book continued on with the passage in Deuteronomy 6 about how parents need to remember, explain, and share God with their kid when they stand, walk, lay down, on the road, in the home. It was the walking that struck me. Perhaps because Anna recently spent three weeks trying to learn to crawl and walk. I thought of those neurological connections she doesn’t have, the ones that gives a sense of balance, the ones that intelligently show Simon that alternating feet is way better than walking two lefts then one right.

So a vow is in order. I think a valid application for me to fulfill Deut 6 with Anna would be for me to show Anna the way she should go, meaning that I should show her how her body should go. I need a greater personal pledge to Anna’s PT, OT, vision, and speech. Not aligning paid professionals but becoming Anna’s servant intentionally.

Please Pray:

-For grace to fill our hearts, make things possible, and bring joy to our family

-For progress for Anna in crawling and walking and head control.

-For health, a week ago Anna became sick again, waking up coughing, needing repositioning, and struggling to keep her throat clear

Praise God for:

-Christ with us!

-For a nurse we interviewed and will help us two days a week!

-For Anna's wheel chair that was once denied being accepted for purchase through insurance.

-For the CES waiver re-evaluation that went well.

Joyeux Noel,

Nicolas, Lindsey, Anna et Simon

God's Timing is Perfect

Dear Prayer Warriors,

On Anna’s bedroom wall I nailed a woven hat with a ribbon on it. I bought it with full fatherly affection around Easter last year. It’s lovely. When I eagerly came home with it, it dawned on me that Anna could not wear the hat because it has a protruding rim for the whole circumference. Anna’s head has to rest on something almost always. I felt stupid for a second, like duh, I just want to chuck it like a Frisbee. By God’s grace after that moment of being heartbroken about it God gave me hope. I chose to see the hat as a symbol of waiting on the Lord for His healing of Anna. I placed it on the wall in wonder until Anna could wear it because she will have gained head control.

At the center of these Prayer e-mails I want to be honest about my relationship with God and my family. I have found that honesty drives empathy, which compels prayers.  Then together we surrender and lay down Anna before God.

Truth be told, my faith isn’t mature its maturing. So it’s normal that I share imperfect incomplete understandings of faith and God as I try to better grasp His Word and not carelessly handle Truth. God’s healing has left me confused; I also sense some personal fears that may confuse my mindset. I want to work through and explain a bit about Anna, Panama, and Portland. What is God asking me to believe Him for regarding Anna?

I’m not grumbly or feeling like God miss led us because He is in control. Both trips were met with much grace and help. It’s more the fact that my faith tells me that He is healer, so what’s holding Him back? Perhaps I’m appealing to Him about the results. Truth be told there has been healing/progress that originated from these travels. You have to be around Anna often to see it. Anna’s therapists have noticed a decrease in tone/spasticity, praise God. Wrists that were unwilling to rotate a certain way now do so without resistance. Most noticeable to me are her eyes that are working to grasp their surroundings -much more than ever before. They are much more engaged and intentional. Thank you Lord.

As you well know I have wanted her core muscles to really spruce up, that her reflux would end and the head control would be mastered... As if to say that I would be ok with the other issues still existing. Why isn’t it enough for me to recount how God kept her alive in the early days, how she has been spared of seizures miraculously, and especially how God meets us every day to empower us to care for her?

I’m confused because healing Anna is an easy and little thing for God. He also has a stunning track record of healing even today. Prayer warriors, we prayed out of expectancy, fervently. So I humbly ask “Lord, where is the healing?” To clarify: I’m not asking this to guilt, scold, or demand God do what I want for Anna. I ask because I know He is able, why wouldn’t He? I trust His reason is good. My role is to wisely say “It is well with my soul.”

Anna is a gift no matter her degree of handicap. I think the best prayer we can pray is “God be glorified through the healing of Anna in Your time in as much as it pleases You.”

Please Pray:

-For Anna to qualify for the Medicaid CES waiver, we first applied in Febuary and were turned down. Anna is being reevaluated tomorrow. This would enable increased therapy hours and options as well as a fund for things like a van ramp.

-For reflexes, she has no defenses like when she is being attacked by Simon. She'll take the hit and cry. Lindsey is trying to train her arm and legs to activate when Anna is attacked.

-Praise God we have hardwood floors! Pray that we would now do our part and use them by placing anna in her crawler daily. 

-For God to take away her reflux, that Anna could one day feed herself and eat something more solid than purees.

-For my heart to be yielded to the Lord's will and trusting in His call for me to father Anna.

-For a RN to provide the needed relief of care that is heavy on Lindsey. We have a two companies looking but no match yet.

-Praise God for Anna's health returning to her, no more congestion and coughing, she is sleeping through the night.

-For the ability to roll over on her own

-That I would be gentle and attentive to her needs and the person she is becoming. Often i forget she is changing and growing just like Simon.

Thanks for working through this with us,

Nic, Lindsey, Anna, and Simon