If you have visited here before, you can probably see that I have changed the name of the blog again. I started blogging at 4URuthie to tell the story of our journey to adopt our 1st daughter. I changed it to Mountains for Maggie when we were praying for God to move mountains on behalf of our 2nd daughter. Well now it is no longer just Ruthie’s or Maggie’s stories. It is now our family's story, and the stories of those we share life with, as we Conquer Mountains together. Both ConqueringMountains.net and 4URuthie.blogspot will lead here.

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I am a pastor's wife, mother of 4 kids (2 adopted and 3 with special needs), physical therapist, and photography junky. This is where it all comes together for me. Feel free to join along as I process life out loud.

Thursday, October 10, 2019

Truths I Want My Special Needs Kid to Know- Part 4

Taking Hold of That Which We Cannot Control.

I call the first identity marker or identity-shaping category, “that which we cannot control,” because our disabilities or life experiences are truly completely out of our hands and we have no power to go back and change them or rewrite that part of our story.    As a parent of a special needs child, I often wonder what I could have done differently to change the outcome for my child.   Before I knew Jack’s condition was genetic, I wondered if it was because I worried too much in my first trimester or was it because I painted my husbands office while I was pregnant.   When my youngest suffered 2 strokes that were caused by a strep infection, I would have given anything to go back in time and not have placed her in the YMCA childcare class where she most likely caught strep.  I couldn’t (and still can’t) wrap my brain around what that one workout class cost that child, but we can’t quarantine ourselves in our homes to protect ourselves from the unknown and we certainly can’t turn back time and keep “that which we cannot control” from ever happening.  

What we can do (and help our kids do) is take that life experience or circumstance and look at it through a different lens.  Instead of finding our identity in the existence of that circumstance, we can be defined by how we receive, interpret, and respond to it.  You can probably see by now that my favorite stories are of those people who allow “that which they cannot control” to push them to a greater purpose. 

When Steven Curtis Chapman lost his 5-year old daughter in a tragic accident, he and his family were understandably devastated.  I have never lost a child and so I am completely unqualified to even try to put into words the pain they must have felt.  Instead, I want to focus on what they did next because it was pretty incredible. In the midst of their grief, they opened an orphanage in China that has now served over 2000 special needs children while offering them quality medical care.  Maria’s Big House of Hope has also seen over 150 children placed into forever homes.  In the description on their website, it says, “That big blue house in Luoyang is proof of God’s redemption and of his ability to bring beauty from the ashes.”

Oh my goodness I could tell 100 stories like those but this is not about other people’s stories.  It is about helping your child, take their own circumstance, and write their own story.   So what are some practical ways to help them do that?   I have 4 categories to help us navigate those waters. 


1. Personal Strengths – We need to look for places where they can shine either through their challenge or in spite of it. 

My daughter Ruthie, who has arthrogryposis of her arms and hands, spent the first 2 ½ years of her life in an orphanage doing everything with her feet.   Her feet were basically her hands and so what was meant to limit her actually gave her crazy foot skills.  So when she was 4, we enrolled her in soccer.  From the first game, Ruthie was that kid kicking the ball down the field while everyone else was picking flowers.  Today, I love watching her in a one-on-one scenario where she gets to move the ball with her feet in ways that others might only be able to do with their hands.  She loves soccer and it has given me the opportunity to point out to her that arthrogryposis just might have helped her in soccer as much as someone would have expected it to limit her.  

In the spring of 2016, I attended a conference for parents of children with Hereditary Spastic Paraplegia.  One of the speakers at the conference was Rebecca Hart, a Paralympic athlete with HSP.  Rebecca is an equestrian.  She reports that horses allowed her to turn her anger into passion.  She says that, “Horses were her equalizer.”  Rebecca found her passion through her condition and then found success in spite of it.   I don’t know Rebecca’s parents, but I rejoice with them in my heart because I know the joy they must feel to see their special needs daughter, whose trajectory was at one point concerning, to now be living her passion. 

We will talk more about discovering your child’s individual strengths in another chapter.  Here I hope to open your eyes to the possibility that your child’s experience or special need may set them up for success in an area that you never anticipated and it is worth your time and energy to explore that. 

2. Positive Action – It is an awesome moment when you can help your child to see the world apart from their personal struggle and then step outside of their pain to serve someone else in theirs.   

A friend of mine went through a divorce just a few months before Hurricane Harvey hit our city.  She had just moved her children out of their family home and into a much smaller rental to settle into their new reality when the floodwaters came.  Here is her testimony from those days and her parenting win:  “When we flooded in Harvey, I made sure that the kids thanked each person who helped us, donated stuff, etc. so they could see where their new ‘stuff’ came from.  We also have been going to a homeless shelter once a month for the last several years to throw birthday parties for homeless kids, so after Harvey when we went and they realized that the kids there lived like we had after Harvey, but they did it EVERY day; it had a huge impact on their frame of mind.  They all were much more appreciative of the kids circumstances then than they had ever been before.  It was very eye-opening, and has stuck with them.  Now when we go each month they insist on taking toys, books, clothes, etc. to the kids there so they can be blessed like we were.”  Her kids came out of a terrible year of tragedy heaped upon disappointment with a lesson on gratitude and perspective.   I think it is important to note that she was taking her children to the homeless shelter before her divorce and Hurricane Harvey.  She made an intentional effort of instilling a heart of service and gratitude into her children before it became critically necessary.  

Service for your child may initially look and feel to them like forced labor.   That is perfectly okay.  They can’t feel compassion for what they have not seen or experienced.  Your goal, however, is for them to transition (like my friends whose house flooded in Harvey) from kids who participate out of duty or personal entertainment to kids who participate out of compassion and a deeply rooted desire to serve. 

One final note, when looking for a place for your child to serve, consider your child’s passions, giftings, and own life experience.   Signing my 17-year old up to serve in an inner city football league would be a total failure.  The kid hates sports.  However, he found his passion through serving in a different inner-city ministry.   Seeing how God was shaping his heart for service, I recently pulled him out of school to take him to China for a week to work with special needs orphans there.   Most adults would not have been as useful and servant-hearted on that trip as he was.   If you guys grabbed coffee next week, I am fairly certain that he would tell you that his opportunities to give back have not only shaped how he views his own struggles but have been the vehicle through which God has captured his heart for service after he finishes high school.   


3. Ongoing Purpose – The third suggestion for helping your child have a healthy perspective of their own circumstance is to enable them see that they have an ongoing purpose even in midst of their suffering.

I have a friend who lost her husband to cancer 10+ years ago.  Her daughter was in elementary school at the time and wrote this regarding her experience:  “Even though my brother and I lost my dad at a young age, our mom never let us use that as an excuse.  She would continually push us to give 110% in everything we did because that’s how our father raised us.  We weren’t allowed to become bratty-kids (although I definitely had my moments/phases) because she would always remind us that she and dad had raised us better than that.  Basically, she did a really phenomenal job of instilling in us the fact that just because Dad was gone doesn’t mean everything he ever taught us was gone with him, and that we should always try to honor his memory and make him proud. I feel like this really pushed me to get to where I am today, and I know I’m not done with school and in the real world yet, but I’m almost there.”  My friend did an awesome job at teaching her children that the hope and purpose for their lives was bigger than their loss.

This is where we teach our children that God created them for a purpose and that He was not taken off guard or surprised when they came against this challenge they now face.  Instead, God is likely using this experience to help shape them into the person they need to be so they can better walk in their created purpose.   


4. Lasting Perspective – Finally when it comes to helping our children have a right relationship with their circumstance, we need to give them lasting perspective.  When Corrie Ten Boom, who wrote The Hiding Place, was placed in the back room of a Nazi prison camp that was so infested with fleas that the guards would not even enter, she started a Bible study.  That flea-infested location, which felt like torture placed upon torture, turned out to be the safest place to teach others about Jesus because the guards wanted nothing to do with it.   When she realized the blessing of her location instead of the curse of it, she was granted perspective. 

This next idea is so important to me that it was originally slated to be it’s own chapter.  One way we can give our children lasting perspective is to help them see that everyone has something that they are dealing with.  My brother has a great statement that really brought this home for me.  He says, “If we all took our ‘something’ and threw it into a pile to be redistributed randomly, we would jump into that pile and fight like hell to get our own ‘something’ back.”  I think it’s true but we can’t appreciate that until we stop looking at our own circumstance long enough to appreciate the significance of someone else’s.  When we truly appreciate another’s struggle, our own becomes less burdensome and we are suddenly not alone.   

One day, while driving in the car, Jack and I had the pile redistributing conversation.  I would have him name someone who he thought had no issues and then I trusted him with the insight of what they were actually battling.  Boy A, who seems to have it all together, he is dyslexic and struggles every day to get through school.  Boy B, who was mean to you in class, has a parent battling cancer.  Boy C, who you see playing outside physically uninhibited, his parents are going through a divorce and his father is moving out.   Everybody has something and the sooner we can help our kids appreciate that, the sooner they can move from a state of feeling cheated by life to feeling compassion for others who are also struggling through it. 

 This last example is raw but honest.  I only share it because there are some of you who I am confident want to shoot me the middle finger when I suggest something like perspective in your unimaginable circumstance.  I get it. Maybe I even deserve it.  When my mom died, the wife of her first cousin stepped in to play a significant role in my life.  I affectionately called her “Aunt Mary” even though she really wasn’t my aunt at all.   You might remember that I mentioned her in the introduction.  She is significant here because she invited me to church, bought me a Bible, and told me about Jesus in a personal way that my previous church upbringing full of rituals had not.  My life was shaped by my Aunt Mary’s influence and I have my faith because of her investment in me after the loss of my mother.  If my mother had not passed away, the God fearing wife of her first cousin would not have stepped in and introduced me to the Author of my faith.  I miss my mother dearly and not a day goes by when I don’t wish that she were in my life and the life of my children.  I also have the raw and eternal perspective that her passing put into motion a chain of events that led me to Jesus.   Perspective is both hard and beautiful sometimes.

So to wrap up this chapter and attempt to pull it all together, let’s travel back for a moment to where we started.   Our children have the potential to find their identity in “that which they cannot control” like a disability, divorce, death of parent, or another life-changing event that they did not get a vote on.  What we can conclude from those who have walked this road ahead of us is that we as parents have the ability to speak into how they interpret and incorporate those realities into their story.   A few of the tools at our disposal include the opportunity to focus on their personal strengths, help them take practical steps toward service and positive action, enable them to see their ongoing purpose, and give them the gift of lasting perspective. 

Thanks to those of you who are following along as I post these chapters.  My sincere prayer is that you feel both encouraged and equipped. 

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