Our son, Timothy is the bravest and most determined young man we've ever know

Dear Family and Friends,

We’re convinced God’s Word teaches that those who lead God’s people must first lead their families well (1Timothy 3:1-13; Titus 1:6.)   We saw it repeatedly during our postings in Africa.   Many times, there would be a temptation to “do the real work of ministry.”   Yet, if we prioritized the needs of our children, God used that to position us to meet the needs of other families.     Our most effective ministry activities were always rooted in family health.    Another matter we are convinced of is that there can be very long seasons of trial, error, and waiting before God’s full intent is disclosed.   

Our adaptation to America has gone slow. Yet we are convinced it is of God.   In this newsletter we want to catch you up on our son, Timothy.    The last two years have been one of both great challenge and discovery.     Much of it has to do with Timothy becoming a teenager and with that increasing his awareness and communication skills.    

For most of Timothy’s life we have described him “as having a minor case of cerebral palsy.”    He had little use of his right hand.   His right leg was a bit smaller than the left.   Yet, he has always been very athletic.   Many times, people describe him as “inspirational.”   

A friend last year made a very pertinent observation as she remarked, “I didn’t know there were minor cases of cerebral palsy.”   She was right.   We’ve had a couple years in which we continue to discover that Timothy’s cerebral palsy is very complicated.   There have been many discoveries and ups and downs.

In February 2016 Timothy had surgery which lengthened tendons in his right forearm.  With the lengthening of tendons and different type braces Timothy gained the ability to grasp on his right hand. He learned to ride a bike. 

For years we had noticed that Timothy’s sensations were different than others.   He could go long times without food, exercise without rest, and stay outside with few clothes in the cold.   Some would see him as “being tough.”   Yet, we increasingly realized his different sensation perceptions made it difficult to stay on track with nutrition and rest.   

He also struggled with digestion and respiratory infections.    His pediatrician, Dr. Akin  (/https://balanceweightcenter.com) thought that the hemiplegia (diminished use of right side) was internal as well as external.   His right lung was not as efficient as his left.    She saw beginning signs of scoliosis.   We suspected that the under utilization of his right side was creating imbalance.

Last year, we cautiously began 9^th grade.   It didn’t go very well.    Timothy kept getting sick with respiratory infections.    He struggled to keep up academically with math and science.   He also finally told us that he was in pain sitting in school desks within 15 minutes.   It all made sense to us as his cerebral palsy causes muscle spasms.   Sitting for hours was the worst thing.    After several months, we realized we couldn’t make public high school workable.   We withdrew Timothy and began home schooling.

Yet, home school has been a struggle to have social connections and stay on task. 

Also, Timothy’s athleticism struggled.   With his rapid growth and muscle tensions he frequently had pain in his shins, knees, and heels.    As we tried travel soccer teams the practices were too intense and didn’t give him time to rest.  

Dave had noticed that it felt like Timothy’s muscles fired in his right chest, shoulders, and back while   not firing in his right hand. He and Timothy started going to the local weight room.   Dave started having Timothy use weight lifting straps like power lifters use for dead lifts to get grips.   Then he started looking on line and found the Active Hand gripping aid out of the United Kingdom (/https://www.activehands.com.) It was a game changer.    With reading and following intuition we found a path forward.    Dave and Timothy did big lifts like squats, dead lifts, presses, and rows plus body weight exercises like dips, pushups, and pull ups.    Sometimes they used a smith machine when Timothy couldn’t balance weights.    They also bought neutral grip free weight bars that were easier for Timothy to grip.    In the last year Timothy has gained 26 pounds of muscle weight, can now do 13 pull ups (https://www.youtube.com/watch?v=IhHPFHJBUjY,) balanced out the muscle and bone structure in his rib cage, and his pediatrician now sees negligible differences in efficiency between his right and left lung.    

 Also, the routine and discovery got Timothy on a journey of nutrition.   He became extremely disciplined with supplements and meal plans.   (Thank you Dr. Miravone Dorough at https://www.drmiravone.com/ .)  He is not sick as often.  His spirits are more optimistic.   

As we were removing Timothy from public school and pondering where to connect, Dave read an article in the Chicago Tribune about a lawsuit to create opportunities for disabled students to compete in the Illinois High School Athletics (http://www.chicagotribune.com/suburbs/evanston/news/ct-met-evanston-disabled-athlete-lawsuit-20171102-story.html .)  Dave had never heard of ambulatory or Paralympic sports for athletes with cerebral palsy.   He started googling, emailing, and making phone calls.    For the first time in 15 years we started finding other families and young people whose journey was like our own.

In the process Timothy was asked to go to San Diego for a development camp with the USA National Paralympic Soccer team for a week in December at the Olympic training facility (https://www.ussoccer.com/stories/2017/12/07/23/05/20171206-news-pnt-domestic-camp-roster-release.)  

Upon return to Chicago land Timothy began running track for Great Lakes Adaptive Sports Association (GLASA) (http://www.glasa.org/.)   So far, he’s ran 2 meets.    He’s won his classification and age in the 100 meters, 200 meters, 400 meters, and long jump.   His times in the 100 and 200 meters are fractions away from becoming “emerging” in which he’ll qualify to try out for the USA National Paralympic Track Team.    His long jump is also just inches away form “emerging.”   Timothy will run in the USA Junior National Paralympic Track Meet in Fort Wayne from July 25 to 27.   We’re all curious as to how he will do.  

A huge benefit of these discoveries is that we’ve met other parents who share a similar journey.    In that process we’ve discovered that much of Timothy’s academic struggles were related to his cerebral palsy.    Again, we heard counsel and started making phone calls.  It took us a couple months, but we were able to get neuro-psychological testing at the Fran Center (http://www.francenter.com/.)  Timothy has been diagnosed with dyscalculia (a math learning disability.)   Much of Timothy’s struggle academically is related to having limited use of his right side.  With that it is difficult to conceptualize space as others do and math is a struggle. 

We are now in the process of re-enrolling Timothy in public schools and advocating for him to get special accommodations and classes. We’re thankful to have diagnoses and good counsel from others.   We really don’t know where this will go.   However, we’ve never known a braver and more determined young man than Timothy.  We do see this all as a God journey.   Thank you for keeping us in your thoughts and prayers.

Mungu akubariki (May God bless you,)

Dave and Jana 

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Ignite Church Planting
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Schererville, IN 46375 

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