The Day My Dad Embraced My Daughter's Long White Cane

"Don't forget your cane" I reminded my then 8-year old vision-impaired daughter Mandy as she got ready to take a walk with her Papa to the convenience store across the way to get some gummy life savers.

"Nah, she doesn't really need it" my dad insisted, his granddaughter more than willing to agree. She often welcomed a break from taking her cane with her. This was usually fine if she ventured in familiar areas when it was clear and sunny out. It was a bright beautiful day and she was with her Papa, so I conceded. 

Mandy received her first long white cane shortly before entering 1st grade. I remember that first conversation with her mobility teacher vividly. She brought up the plan to introduce a cane to Mandy in a gentle, sensitive manner, as if expecting a strong negative emotional response, resistance or even outright refusal. Neither my husband Scott, Mandy's dad, nor I are one for denial. Each having been through a painful divorce several years earlier, we both tended to face the reality of inescapable difficulties head on. During the conversation with Mandy's teacher, I remember almost feeling compelled to reassure her that it was ok. I was trying to convey "No need for kid gloves. We can handle it. If you think she needs it, then she needs it." A short time later, Mandy received her first long white mobility cane. Since she started with it while she was still quite young, she adjusted to having and using it fairly well. It didn't take long for us to see its usefulness in the life of our daughter. Other people around us, however, weren't necessarily so positive or open-minded about the cane. It's funny how people seem able to handle hearing that our daughter has a incurable blinding retinal disease but then have great difficulty accepting her need for and use of a cane. Obvious signs of disability make many people very uncomfortable. Most of these people saw little of Mandy's daily struggles with mobility and likely saw her as too capable and not disabled enough to need it. My folks didn't say too much, but it was evident that they had mixed feelings at best about the cane.

Mandy and Papa went for their customary weekend candy walk. When they returned about twenty minutes later, dad seemed distraught, muttering under his breath in frustration. While Mandy amused herself in the backyard happily feasting on her treats, I heard dad murmur to my mom, "The poor kid. She tripped all over the place. Poor kid."

I went over to my Dad and challenged him. "Dad, I want you to take Mandy on the exact same walk tomorrow, but this time have her use her cane. Then, tell me how it went." He quietly obliged.

The sun rose Sunday morning and so did Mandy's suspicions when Papa initiated an unheard of second candy walk. She eagerly readied herself and gave no resistance to Papa's suggestion to grab her cane on the way out. 

They returned about a half an hour later both appearing tuckered and stoical. Not surprisingly, Dad didn't instantly reveal his impression. He went to lie down for a nap. When he awoke, I went to him and asked, "Well?" Seeming to avoid eye contact, he replied in a very matter-of-fact manner, "It really does make a difference. You've done what is right for her" I know my dad. Even though he was not looking directly at me, I could see in his eyes the pain and grief that comes with acceptance. Attempting to reassure, I added, "Dad, she is still Mandy. The cane doesn't change her. She is the exact same person with or without the cane. However, with the cane she is supported and confident instead of insecure and full of self-doubt, not to mention potentially unsafe. We wouldn't take a walk without wearing our eyeglasses, right? It's kind of the same thing. She uses a cane Dad and it's ok" He managed to keep the tears which were quickly welling up in his eyes from falling down his cheeks. A quick hug and two words, "I know" were the end of the matter that day. 

In the several years since during our Cape Cod weekends, the cane comes along on most excursions and stays put for others depending on factors and needs which Mandy is keenly aware. It has become such a familiar fixture in our lives that unless an outsider makes a comment or has a reaction, it is no longer debated and rarely discussed. Except, of course, when she leaves it behind nearly everywhere we go (grin)

The Miracle Of Mediocrity

It is 8th grade graduation at Higgins Middle School in Peabody, MA.  In the midst of announcements recognizing junior honor society members, scholarship recipients, superlative winners and top students in records of attendance and community service, please let me introduce you to an academically average and otherwise ordinary student, my daughter, Mandy.  Her name will not be announced for any awards today.  She sits among a large sea of faces in the letter "M" section of the incoming freshman high school class of 2019. 

To many, the most outstanding thing about Mandy is that she is "the kid with the cane" the only student out of 450 in the 8th grade graduating class who uses a long white cane for safe independent travel.

Mandy is not on the president's list.

She is not a member of the student council.

She does not volunteer as a peer mentor or tutor.

She is not in the band or on a sports team. 

She does not have perfect attendance because with four eye disease specialists, appointments inevitably get scheduled during school hours. 

Her artwork does not hang from the school corridor walls, though her boundless imagination colors everything she touches.

She doesn't formally cheer at athletic events, but she is the most lively 

cheerleader of American history that her 8th grade social studies teacher has ever seen.  

Mandy is not on record as one who "volunteered the most hours at the local food pantry"  Her community service is encouraging a newly relocated shy classmate and consoling a much younger bus mate temporarily trapped in a damaged seatbelt.

Her exemplary performance comes not in straight A's, but in achieving just one semester of honor roll while juggling lessons in Braille, assistive technology and orientation & mobility.

Her superb memory does not produce perfect test scores, but it does inspire choosing a year end gift for a favorite teacher based on an offhand remark made several months earlier, at the start of the school year.

She is a member of the honor society for perseverance. 

She earns a 4.0 in enthusiasm.

Her superlative is for most inquisitive.

Her biggest achievement is adaptability.

She is a recipient of scholarships for courage and kindness. 

Mandy's strength comes out of her weakness and her assets are a direct result of her limitations.  My daughter is daily learning to make advantage out of disadvantage. 

It is a beautiful adventure to witness the miracle in mediocrity. 

Teetering Between Loving Sleep & Hating Sleep

I Hate Narcolepsy

written 

May 18, 2015

Half alive

Half a life

At least that's how it feels

Maybe less

Maybe more

Half if some I steal

A monkey always on my back

Dreams just out of reach 

Ideas that I don't realize

Ambitions I don't seek

Dreams stay dreams, ideas stay thoughts

Trapped inside my head

Rest is never restful

A chore inside my bed

Every day a battle

Having to pretend

Sleep a daunting enemy

Sleep a welcome friend

I'm not just tired, I'm more than sleepy

Can you understand?

I'm something that I can't describe

A zombie in demand

Half a life

Half alive

Alert to only some 

Mind and body are at war

A victory for none

The God Box

A coworker and I were talking one day about the Christian faith.  I was known by others at this previous place of employment as a committed Christian, yet I was not the one to raise the subject.  This gal shared how she had been raised in a Christian home herself and grew up in a family who was actively involved in the life of their home church.  She had previously embraced the faith and as a young adult she had been quite active in her church, playing the guitar and singing for the worship team and leading retreats.  There was a time period when she even wrote a few worship songs of her own and was a passionately involved leader in youth and children's ministry.  She went on to share how she vehemently denounced the faith several years back after her sister and her sister's new husband were both instantly killed in a head on car collision while away on their honeymoon.  Since then, she began exploring other religious traditions and had come to consider herself loosely affiliated with Buddhism, giving credence to an accepting and "golden rule" way of living life.  

I cannot recall why on this day she decided to volunteer to me these private details and her more general gripe with Christianity.  No subject matters leading to this seldom discussed topic stand out in my memory.  In a respectful, matter-of-fact way, with hand motions to demonstrate her points, she went on to explain that the way she sees it, Christians put God in a box; a nice neat box that He doesn't belong in.  She contended that Christians do this because it makes them feel good, safe and comfortable to the exclusion of others and other belief systems.

I found this very interesting.  I thought for a minute, then with the same gentleness and respect, I explained how I saw it very differently; almost the exact opposite actually.  Going along with her box analogy, I stated that from the Christian perspective, as I had come to understand it, God has put Himself in the box.  He essentially is the box and then offers it/himself as a gift, a gift of salvation and peace.  From the standpoint of biblical Christianity, I confidently asserted, we must accept the whole gift, all that is in the box, or none at all.  God's truth is not a smorgasbord plan where we pick what we want and leave what we don't want.  (Revelations 22:18-19)

I further explained that although I love The Lord and I am grateful for His gift of salvation, I am anything but comfortable with the entire contents of the box.  For example, scripture is clear that as believers, we will face trouble and tribulation (John 16:33, 2 Timothy 3:12)  Or, that we will be persecuted for our faith (Matthew 5:11-12) <but not without his comfort, faithfulness and reassurance (Romans 8:18)> 

I challenge a person who identifies themselves as a Christian, either of the Protestant or Roman Catholic tradition, who lives picking and choosing what they believe to be valid to apply to their life in scripture.  I imagine many such people don't know they are doing this.  It's why we have to continually study scripture and desire to become more like Christ.  Without that, the impact of cultural influence, which is ever changing, remains an unchallenged and strong force.  Think about it, in our modern culture, for the most part, someone who believes the entirety of the bible message, unpleasant parts included, is often looked upon as gullible, brainwashed and unable to think for themselves while a person who believes what they want to believe, what seems right to them is commended and acknowledged as an independent free thinker. For those who claim Christ, He simply cannot be treated as an option when He clearly states that "I am THE way" not "a" way.

The implications of this conversation frequently crossed my mind over the weeks and months following. 
Is it enough for the one who completely accepts the God box to simply "have" it and to never open it?  Can one view it as important, vital even, but not behave in a way that conveys that it is?

My inquisitive daughter Mandy, who has accepted Christ personally, asked a heavy question one day, "Mom, what's the difference between a real Christian and a person who is just religious and goes to church?"  I knew what she was asking and what the answer is, but wasn't quite sure how to articulate it.  I thought for a bit, then I told her the "God Box" story and explained further by saying that for some people, the religious "go through the motions" ones, it seems sufficient to just have the box.  They live as if there is no need to do anything with the box other than be in possession of it.  They somehow believe that there is no need to open the box and become familiarized with its contents.  For others, they open the box and interact with its contents, but only on a fairly superficial level.  They tend not to wrestle with its more difficult and challenging concepts. They probably think that this is enough.  For others, perhaps it is done to meet family expectations where there is often a vague yet strong presumption that accepting and opening the God Box is optional.

Growing up Roman Catholic, I fellowshipped with some truly changed born-again believers.  I also encountered many church-going people who expressed conviction that "being Catholic" or that infant baptism and/or good living saves them. 

A true, born again believer makes a personal life changing decision to accept this free gift and make Christ the Lord of their life.  The motivation is love, acknowledgement of sin and the realization of the desperate need for a savior.  A true Christian not only desires to become more Christlike, but they also know that others needs this same sin remedy.  They are sensitized to sin in the world around them and desire for people to become saved.  In a nutshell: believers open the box and live getting to know and live the contents, even the parts they don't like and know others need the same. 

Back to my friend at my former job.  The sentiments behind this whole "God box" talk and her denouncing her faith stem from an unimaginable loss.  I didn't bring her experience losing her sister and brother-in-law in such a tragic way into our conversation.  We weren't close friends and such a tender, painful subject seemed better left out of my retort.  However, if I had addressed it, I would have spoken about how nowhere in scripture are we told that to be a Christ follower means to be free from unjust suffering.  A solid bird's eye view of the bible from Genesis to Revelation shows that in many cases, it can be just the opposite:  that our suffering in not so much caused by God but more allowed by God (2 Corinthians 4:17).......that human sin and overall disregard for God directly and sometimes indirectly creates or contributes to our own and others suffering and, most importantly, Christ Himself, God in the flesh, suffered more than any of us can ever imagine, and without one moment of moral sin. (1 Peter 3:18)

The God box (the Christian Faith) is an all or nothing deal.  The words of Christ Himself leave no room for doubt.  What sounds exclusionary to some is reassuringly welcoming to Christians.  What feels narrow and confining to some is peace and freedom to those of us who have accepted, opened and come to cherish The God box.

All scripture is from the New King James Version (NKJV)

Revelations 22:18-19

"For I testify to everyone who hears the words of the prophecy of this book: If anyone adds to these things, God will add to him the plagues that are written in this book; and if anyone takes away from the words of the book of this prophecy, God shall take away his part from the Book of Life, from the holy city, and from the things which are written in this book."

John 16:33 "These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world.”

2 Timothy 3:12 "Yes, and all who desire to live godly in Christ Jesus will suffer persecution."

Matthew 5:11-12

“Blessed are you when they revile and persecute you, and say all kinds of evil against you falsely for My sake. Rejoice and be exceedingly glad, for great is your reward in heaven, for so they persecuted the prophets who were before you."

Romans 8:18 "For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us."

2 Corinthians 4:17 "For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal."

1 Peter 3:18 "For Christ also suffered once for sins, the just for the unjust, that He might bring us[a] to God, being put to death in the flesh but made alive by the Spirit"

John 14:6

"Jesus said to him, “I am the way, the truth, and the life. No one comes to the Father except through Me."