disabilities


My son has Cerebral Palsy (that’s early onset brain injury to the uninitiated). He depends on a wheelchair and is non-verbal. In a way, this reality in our family has always isolated us from the typical western church social structure. We can’t always attend church family events, because access or environment makes it difficult for Isaac. For a while, when he was a very emotionally unstable pre-teen, my husband and I even attended separate church services because Isaac was too disruptive to attend and there was no one to watch him.

It was ok. I’m not complaining. We made it work for us. But it has made me sensitive to the broken people …

The physically disabled, like Isaac – people who don’t come to church because the physical or social structures won’t accommodate them.

Those whose lives have been broken through addictions – people who may not come to church for fear of not fitting in.

The relationally broken – single parents who are outside because they don’t fit the Sunday morning mold of two smiling parents and 2.3 freshly scrubbed children. Mothers who have lost custody of their children. Runaways. Prostitutes.

The economically broken – people who may shun church because they can’t afford the “right” clothes, or car, or the “suggested donation” for lunch, or the fee to send their kid to camp.

I ask the following question of church goers out there: What are we going to do about the broken people?

I have some ideas – but I’m only going to mention one – one that is close to my heart and experiences.

Even though, as a church, you are not required to meet ADA (American Disabilities Act) specifications in your building, do it anyway. Build ramps, install elevators, designate wheelchair seating, provide space and opportunities for families to worship together. If you’re raising money for a building project, don’t start building until you have enough money for ramps and elevators …

Neglecting to do so sends the wrong message. It says …

  • we don’t see you
  • we don’t value you
  • we don’t want you

Exactly the opposite of the message of the gospel …

This post is my contribution to a group writing project at Bloggers Unite to promote the empowerment of people with disabilities.

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September 11 does not mean the same thing to me that it does to you.  September 11 was a day of sorrow for me long before 2001. 

But it was also a day of great joy.

My son, Isaac, was born on September 11, 1992.  But my joy was almost immediately mixed with sorrow on the day of his birth.  Isaac was born with multiple severe handicaps and our joy over him has always been tempered with grief.  His childhood and thus my motherhood has been anything but typical.  We have no baby book, no pictures of those first toddling steps, no record of first words, no “aced” spelling tests to save.  My trips down memory lane probably show a landscape a bit different than yours.

And yet.

It isn’t a bad landscape.  And it’s probably not as different from yours as I think it is.  I just learned early what every mother eventually finds out.  The journey of motherhood is inevitably one of joy mixed with sorrow, one of triumph and despair, one of great hopes and huge disappointments.  As is the journey of life.

And what I learned on 9-11-92, I experienced again on 9-11-01.  I began the day with joy because we had just purchased our first house, and I was there waiting for the refrigerator to be delivered.  Then, sur-reality set it when I re-entered the plugged-in world and heard the news (hours after everyone else) – great happiness and great sadness experienced within minutes of each other.

But, what I learned on 9-12-92, I experienced again on 9-12-01 (or perhaps it took a bit longer than a day).  And that is that the sun comes up, the birds sing, the breeze blows, people love.  Life looks a little different than it used to.  Life looks a lot different than you thought it would.  But we are remarkably adaptable.  And we can choose to face bravely a life that we no longer understand.  We can choose to offer love and hope in a world that no longer makes sense.

I believe the lessons we learned on 9-11 were just reminders of what we already knew.  Life is short.  Life is fragile.  Life is hard.  And so we need to cherish the people around us.  We need to live each moment as if it counts, because it does.  And we need to do everything in our power to leave this world a little better than we found it.  We need to learn how to hope in the midst of our hopelessness and we need to learn how to offer help even when we feel most helpless.  And most of all we need to learn how to love those around us as if there is no tomorrow.

don’t just remember the pain and sadness and fear . . . remember also the sweetness of life, the inevitable sunrise . . . and let both inform the way you live

 Jeremiah 29:11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

Happy Birthday, Isaac.  Your life has enriched mine beyond description.

This morning I read Psalm 5

1 Give ear to my words, O LORD,
       consider my sighing.

 2 Listen to my cry for help,
       my King and my God,
       for to you I pray.

 3 In the morning, O LORD, you hear my voice;
       in the morning I lay my requests before you
       and wait in expectation.

Then, this evening, I had the privelege of hearing my friend Jon’s thoughts on same.  He shared from a version which instead of wait in expectation said eagerly watch.

In talking, he shared an interesting metaphor of a pregnant woman . . . waiting eagerly, fully expecting that at the end of nine months, she would have a baby.  She isn’t sure exactly when.  She may not know the sex.  She isn’t sure what the baby will look like or how much it will weigh.  But at the end of nine months the baby she is expecting will arrive.  He went on to say that we should expect with the same eagerness that God will act.

And it made me think about expecting things from God.  On the one hand, we should expect, we are to hope, to watch eagerly.  But, sometimes, I think that we confuse expectation with entitlement.  And our prayers take on that type of flavor – This is what you promised, God, so I’m waiting for it . . . still . . . um, waiting . . . when are you going to do what you promised, God?

And my mind goes back to a certain pregnant lady (yes, it’s me), who prayed for a child, begged God in fact. 

After almost 2 years, on a Sunday in January 1992, I became pregnant.  (yes, I know the day – someday I’ll tell you that story).  And all was joy and expectation.  And I prayed for the next nine months for that baby, expecting good things, expecting normal things, expecting the . . . well, the baby experience, expecting God’s blessing.

And then . . .

the unexpected . . . seizures, wheelchairs, orthotics, doctors, specialists, therapy . . . wasn’t God listening?

And I kept asking for a different answer, kept bringing my request before God (that’s what it says, right?), for the next 14+ years.  And because I had a circumscribed notion of what I was expecting – I missed the beauty of the gift given to me.  Because I was expecting a certain mommy experience, it’s taken me almost 15 years to begin to appreciate the precious gift God has given me in my son.

Finally I’m realizing, this is the answer.  This is my blessing.  This is not just God’s will for me, but, somehow, in a way I don’t understand, it’s the expression of God’s love for me.  It is God’s best for me.  Somehow, it’s immeasurably more than all [I can] ask or imagine (Ephesians 3:20). 

And my prayer has changed.  Instead of asking God to heal my son, I am asking Him to heal me so that I can serve Him by serving my family with love and faithfulness and joy, so that I can serve those around me with love and faithfulness and joy.  I’m asking Him for opportunities to help people every day so that I can be His true daughter.  And I’m watching . . . eagerly . . .

 Note: I began to write this on Wednesday and life interrupted.  So, for those of you who want to know the time-line, “yesterday” refers to Tuesday, too cumbersome to rewrite.

 And we know that in all things God works for the good of those who love him, who have been called according to his purpose. For those God foreknew he also predestined to be conformed to the likeness of his Son, that he might be the firstborn among many brothers.   Romans 8:28-29

I am reading a book called The Divine Embrace by Ken Gire.  It in, one of the things the author advocates is reviewing the day and thanking God for the gifts received and the gifts you were able to give, as evidences, glimpses of Christ in your life.  It reminded me of Laurie’s recent post, the Art of remembering.  And today, as I was reading, I was reviewing yesterday, thinking about gifts for which I could be thankful.

You see, yesterday, my 14 year old non-ambulatory son broke his leg at school . . . or rather had his leg broken (since it is physically impossible for him to put himself in a situation in which his limbs are in jeopardy) . . . for the second time in 15 months . . . same leg . . . same spot . . . very similar circumstances.  This should not be.

So, where’s the gift? 

I was angry when I got the call; angry that my son has not been safe, has not been cherished the way he deserves; angry that my agenda had been usurped; angry that I have to keep fighting the same battle over and over; and yes, a little angry that this is my lot.

When I called the school to let them know that his leg was indeed broken, the line went to voice mail and I left a message.  Then, both times the teacher called back, I was unable to answer the phone.  I had plenty of time to think as we waited in the Doctor’s office, xray center, doctor’s office, orthopedic office, exam rooms, etc.  One of the things that happened as I was thinking is that God allowed me to think clearly over the circumstances of this lastest incident.  Even though the circumstances were very similar, the first break was clearly due to negligence, he was not being supervised properly, but this time, these circumstance really could have happened on anyone’s watch.  And, by the time the teacher stopped by the house around 5 to apologize and give us, as she put it, a chance to “rant and rave”, I was no longer angry.  I did not have to exercise any self-control to “not sin” in my anger.

So, I was able to say to her, “I forgive you.”  I was able to say, “that could have happened to anyone.”  I was able to say, “I’m not angry.”  Ludicrously to anyone who does not have the Spirit of Christ as constant companion and guide, I found myself reassuring her.  And she told me about other parents and the way they have treated her, yelled at her, cursed at her for far less reason.  

One of the things Ken Gire suggests is that when God seems silent, He is ” . . . silent in the way an artist at work is silent . . . quietly at work in [us], forming Christ in [us].

It is the last place we look when we are looking to see Jesus.

In ourselves.”

Also, the day seems to have had a curiously grounding effect on me, something I needed most desperately.  One can’t beat real hardship for dispelling formless anxieties.

So, back to gifts, evidences of Christ. 

I am thankful for having had the time and opportunity to think rationally, to review events before I was called upon to react; God’s voice saying, “This is no one’s fault.”  I am thankful for the grounding, the perspective that has taken me out of myself; God’s voice saying, “This is what’s important.”  I am thankful for friends who prayed, offered to help, came to visit just to say, “we’re here”; God’s voice saying, “I love you.”

But most of all, I am thankful for the gifts I was able to give; the gift of forgiveness; the gift of kindness; the gift of love.  Because these gifts are evidences of Christ in me.  And the difference that  she saw in me, that sets me apart from the “other parents” is the love of Jesus.  And when she looked into my face and I said, “I forgive you”, she saw the face of Christ.  No gift could possibly be sweeter; God’s voice saying, “You’re my girl.  Like Father, like daughter.”

A good day.

  . . . God works for the good of those who love him . . .

And I do . . . O, I do.

I  recently had lunch with to a very good friend of mine whose mother suffers from mental illness.  I was relating to her what our pastor/friend had said about my son, who has severe disabilities, that like all of us he exists to be loved by God.  She then went on to wonder if, given that, her mother would be made well in heaven.  Because if she were completely healed then it would be like she was a different person, like she wouldn’t be her mom anymore, the person God had made to love.

I said, “I think, that when we get to heaven, your mom will be who she was always meant to be.”

And I believe the same for everyone who, like my son and my friend’s mom, suffers here with disabilities, infirmities, mental impairment, genetic disorders.  These are the result of living in a lost and fallen world and when we get to heaven, those people will be who they were always meant to be.  As will we, who are crippled by sin and doubt and confusion, be who we were always meant to be.

My very dear friends, will you please grieve with me as I say goodbye to the boy who was meant to be.

I am saying goodbye to the boy who was meant to play little league.

I am saying goodbye to the boy who was meant to run and hurl himself into my arms after my absence.

I am saying goodbye to the boy who was meant to ace the spelling test, fail his math quiz, win the science fair.

I am saying goodbye to the boy who was meant to say, “I love you, Mama.”

I am saying goodbye to the boy who was meant to shout, “I hate you, Mom.”

I am saying goodbye to the boy who was meant to give me sleepless nights when he kept the car out past curfew.

I am saying goodbye to the boy who was meant to wrestle on the floor with his daddy.

I am saying goodbye to the boy who was meant to perfect his debate skills on me.

I am saying goodbye to the boy who was meant to be constantly complaining about his little sisters, for whom he would secretly do just about anything.

I am saying goodbye to the man-boy who was meant to engage me in long, late-night philosophical discussions.

I am saying goodbye to the young man who was meant to meet a girl, fall in love, and wait for her breathlessly at the front of the church.

I am saying goodbye to the man who was meant to play Mozart, build houses, or become a missionary.

Goodbye and goodbye and goodbye.

It seems like I’m always saying goodbye to this boy.

***************************************

But now, dear friends, let us rejoice together because we have the certain hope that one day, soon and soon, we will meet in heaven. 

And there I will get to say hello to the boy who was always meant to be.