Imaginary Play

Imaginary play.

To most parents, this is an ordinary and expected part of childhood.  But, as a parent of a child with special needs, I am very aware that this is not something to be taken for granted. When a child sits down and naturally plays with toys, imagining and creating pretend worlds, this is a miracle.  It may be a commonly occurring miracle, but yet, it is still amazing.  That God creates young children with minds and imaginations which allow them to create and pretend without being taught how to do so is truly spectacular.

This summer, my home has again become alive with the sounds of imaginary play.  I regularly hear the sound of tractors driving along, horns honking, chickens and roosters being placed into wagons and pulled along behind tractors driven by doggies, horses and cows drinking water from the trough because they are thirsty, sheep "baaing", roosters crowing, girls driving cars, elevators rising and falling, bells dinging, fire trucks coming to the rescue, cars crashing, and ladders being raised for fire men and their doggies to climb up tall buildings.

Puzzle pieces are set upright to become animals.  Dishwasher boxes have become caves. Laundry baskets are toy collectors, push toys, and even cozy spots to climb into and play for a while.  School buses travel around, carrying people (and bottles) to undisclosed locations. Dump trucks with heavy loads are pushed everywhere.  A path is being worn as the door to the play house outside is often opened and closed for little boys to enter and play inside. Shutters pop open for impromptu games of peek-a-boo.

Toys are being carried from room to room for play to continue with different surroundings, making it difficult for me to keep sets together for the first time in years.

And Wesley is watching.  Very carefully.  Sometimes, he even comes over to join in the play. He drives his cars down the ramp of the parking garage too.  He runs in and out of the play house outside and takes his turn at pushing around the dump truck.  His play is more repetitive and more a copy of what he has observed and has been taught.  But he is learning.  He is trying.  And his imitation of the little brother he loves so much is beautiful to see.

Digging Up the Root of Bitterness

“Perhaps at other times in my life I wouldn’t have even noticed the offense.  I would have brushed it off, overlooked it, ignored it, maybe even laughed it off.  But not when I’m laid low by sorrow.” - Nancy Guthrie

It started out with hurt feelings when others didn't weep with me when Wesley was born. People seemed to quickly forget to offer help as I struggled to get my boys to literally hundreds of doctor's appointments.  I noticed as those asking how Wesley was doing, how we were doing, slowed to a trickle.  Unlike other babies, who were often scooped out of their mother’s arms and cuddled by others, most people didn't hold Wesley and love on him.  It seemed as though those calling just to say hi or check in on our family became almost non-existant.

“If these offenses don’t reach the level of sin against me, why am I so hurt by them?... When someone who should have been there for us didn’t show up, when someone who should be for us has turned against us, it hurts.  Deeply.  Unspeakably.”  - Nancy Guthrie

It then grew to anger.  I judged those around me harshly.  I assumed that we had been forgotten, that others had chosen not to carry our burdens with us.

As the years passed, I became bitter.  I could barely keep my head above water, and pursuing friendships was not something I was capable of doing.  As others made new friends, I felt more and more isolated, and I held this against them.

“Taking a hard look at my own failures and blindness helped me extend grace to those around me who were as oblivious as I had once been.  I stopped expecting that people around me should get it and instead reminded myself, They haven’t been here.  They can’t know what this is like.  My heart broke as I wondered, How many people have I hurt over the years by being unwilling to enter into their sorrow with them?”  - Nancy Guthrie

Envy crept in.  As I harbored bitterness against those around me, I was also unhappy with the blessings and fortune they enjoyed.

I resented others, bitterness simmering at the whole perceived injustice of it all.

And then, malice showed it's ugly face, bringing with it dreams that envisioned their ruin. Perhaps they would one day get what they deserved.  When trials came their way and everyone forsook them, then I could just give a satisfied chuckle.

These sins took root in my life.  Instead of urgently attacking and putting them to death, I allowed them to eat away at my soul, slowly and painfully killing me.  As a result, they left much carnage in their wake.  I don't trust those around me.  There is dissension.  My envy has torn me apart from dear friends.  My anger has been corrosive to genuine fellowship.  My bitterness has made friendship impossible.

“As we look inside ourselves, we begin to see our own resentment as the real issue in our lives – the sin we are responsible for.  We start to recognize that it’s not what another person has said or done that robs us of our joy but our own grudges that we’ve coddled and kindled.  And we decide to stop throwing logs onto that fire.”  - Nancy Guthrie

So where do I go from here?  How do I start to untangle this pervasive sin that has taken root in my heart?

I am so thankful that I do not fight my sin in my own strength.  For if I did, I would surely lose.  This sin has a tight hold on my life, with roots four years deep.

“How can we forgive when that person doesn’t deserve it and hasn’t even acknowledged what he or she did wrong?  We’re afraid that if we forgive, it’s like saying that what that person said or did doesn’t really matter – that it is excusable or not a big deal.  But forgiveness isn’t minimizing what someone has done.  Real forgiveness is far more costly than that.  It says, “You hurt me deeply, but I’m not going to make you pay.  I will pay.  You don’t owe me anymore – not even an apology.”  Forgiveness is choosing to absorb the pain and pay the debt yourself that you are rightfully owed, asking God to do a work of grace and quench the fiery anger in your heart.”  - Nancy Guthrie

So I start by remembering Jesus.  I remember what he has done for me.  He has paid for my sins, canceling my debt, and making me his holy, spotless, forgiven, and loved child.  I do not deserve this, but yet, it is mine.  God sees the blackness of my heart, but still, He welcomes me as His holy child because my sins have been paid in full.  He blots out my transgressions for His own sake, and He will not remember my sins. (Isaiah 43:25)

I repent.  I choose to turn from the sin which is leading me to death, turning instead to God who gives me life.  I am very aware that these sins will come back to haunt me again and again.  I will judge others again, grow angry at them, and be hurt by them.  I must keep repenting of my sin or envy and bitterness and malice will again enter to destroy my life.  And I cling to the promise in 1 John 1:9, which says "If we confess our sins, he is faithful and just to forgive us our sins and to cleanse us from all unrighteousness."

So I confess my sin, and I ask God to help me not just lock it up in a closet, where it will eventually creep back out and attack me again at a later time, but kill it.  And keep killing it every time it shows its face.

I don't want to indulge hurt feelings.  I don't want to be angry at those around me.  Or bitter. Or envious.

“We stop constructing plans to get revenge and instead nurture thoughts of how we might bless those people.  Instead of being happy when they hurt, we allow ourselves to be sad with them.  We figure out what it would look like to express love in a meaningful way, and then we do it without fanfare.  We refuse to keep dwelling on the injustice of what happened and choose instead to trust God to execute justice, believing that he will settle accounts for us far more justly than we can.  We repent of the pride and superiority that cause us to think to ourselves, or perhaps even say out loud, I would never do that!”  - Nancy Guthrie

From now on, by God's grace, I pray that my love for those around me will be genuine.  I pray that I will abhor what is evil, holding fast to what is good.  I am asking God to help me love others with brotherly affection and seek to show them hospitality.  I want to rejoice with those around me when they rejoice and also weep with them when they weep.  I pray that from here on out, I will live in harmony with others.  I don't want to repay evil for evil (or even perceived evil).  Instead I pray that I will do what is honorable in the sight of all.  So far as it depends on me, I ask that God would help me to live peaceably with all.  (Romans 12:9-21)

* I have borrowed some thoughts from this blog post by Joe Rigney at Desiring God ministries, which the Lord used to convict me and see how these sins were destroying my life.

* Quotes by Nancy Guthrie are from her book, Hearing Jesus Speak into Your Sorrow

Jesus Is Enough

The past few months, I have been slowly making my way through Nancy Guthrie’s book, Hearing Jesus Speak into Your Sorrow.  Nancy and her husband have experienced much sorrow and grief in this life as they have watched two of their children die in the first year of their lives.  In this book, she shares questions she has wrestled with since their deaths and the comfort and hope Jesus offers to us in the midst of our grief.  As I have read though her book, I have often nodded whole-heartedly as I have found what she says to be true in my own life.  I am so grateful for how she has beautifully articulated how Jesus comforts brokenhearted people and offers us life and hope.

Below is an excerpt from her book:

When Jesus says that his grace is sufficient, he’s not talking only about the grace that extends pardon for what we’ve done in the past.  He’s talking about grace that is a present power.  This grace Jesus gives us is the power to go on when we think we can’t make it one more day.  It is the power to believe when doubts and questions are crowding into our conscious thoughts.  Grace gives us what we need to take hold of God’s Word and rest in it amid the voices around us and inside us that tell us God cannot be trusted.

We like to think that the way God can get the most glory is by doing the miracle we’ve put on order.  We’d much rather have Jesus display his power in our lives in the form of healing and wholeness, success and accomplishment, rather than dependence and weakness.  We want escape from weakness, not power in weakness.

I suppose this presents a real test for us.  It forces us to ask ourselves, Do I want to experience and receive more of the grace of Jesus so I can put it on display in my life?  Or do I just want him to give me what I ask for, what I think I need, so I won’t have to hurt so much anymore?  Can I find satisfaction when God does not fix the difficulties in my life but instead gives me the grace to endure them without complaining, without being resentful, without turning my back on him?  Can I move from desperately seeking relief to diligently seeking to glorify God as I treasure him more than my own health or comfort?

Do you think it’s possible to find pleasure in the place of your deepest pain?  It seems incomprehensible, even ridiculous, doesn’t it?  That’s because we don’t really think the grace Jesus has promised us is all that good.  We don’t think it will be enough – not enough to fill our emptiness, not enough to meet our needs.

The truth is, we’re often more interested in getting what God’s got, not getting more of God.  We’ve put in our order for a miracle of healing or relief, and the miracle of his presence seems to us like the consolation prize.

The grace God provides is enough to generate joy in the midst of your great sorrow.  It’s enough to enable you to endure the loneliness and the reminders of loss everywhere you turn.  It’s enough to keep you believing that God is good and that he loves you.

“My grace is enough for you today and for everything you will face in the days to come.  It will be enough – I will be enough – for whatever I allow in your life.”

Consolations

If the Lord had not been my help, my soul would soon have lived in the land of silence.  When I thought, "My foot slips," your steadfast love, O Lord, held me up.  When the cares of my heart are many, your consolations cheer my soul.  Psalm 94:17-19

These were the words that I read this morning, parked in front of an abandoned baseball field, with the audio for the Chronicles of Narnia blaring through the back speakers of the van to entertain my boys for a few minutes.  As boys complained and great battles were fought behind me, I asked the Lord to still my heart, even if only for a moment.

And in that moment, as the past year flashed before my eyes, I saw again that it is only because of the Lord that my soul does not live in the land of silence.  If the Lord had not been my help, I most certainly would have given up.  It is only because of the Lord’s steadfast love holding me up that my foot has not slipped.  Countless times, as I have climbed the rocky terrain, carrying burdens that have weighed me down beyond anything I had thought humanly possible, I have looked ahead at the treacherous path and thought, “This is it.  I am not going to make it this time.”  But the Lord’s steadfast love has upheld me every single time.  Even when I have been faithless and lost heart, the Lord has remained faithful to me.  And yet, as I stand here today, the cares of my heart are still many.  The Lord has kept my foot from slipping and protected my soul time and time again, but I am still walking the same path.  The terrain is still rocky and treacherous. 

In the midst of that not-at-all peaceful moment in the car this morning, the words on the page brought comfort to my soul.  Even though the cares of my heart are many, the Lord’s consolations cheer my soul.  In my weary, burdened state, God comes to me and alleviates my grief and sorrow by comforting me.  He makes it easier for me to endure.  What a beautiful picture.  God consoles me.  My Heavenly Father comforts me.  This is the very reason that I cast my cares on Him – because He cares for me.

As I thought more about this verse, I thought that perhaps this gives us a picture of how we can help one another.  When others are walking through significant trials, there are not always tangible ways to reach out and help.  I know, for myself, when people ask how they can help, I often cannot offer them a specific thing that they can do.

One thing, though, that we can always do for those who are suffering, is be ministers of God’s consolation by walking alongside them and comforting them.  I am often comforted even when others acknowledge that the road I am walking is very hard.  Somehow, knowing that others realize and care makes it easier for me to endure.

Grieving with those who grieve is also a way to show consolation.  It may not immediately cheer someone’s soul, but it is a comfort.  Someone who loves and shows that love by grieving with those who grieve is a welcome companion.

Faithfully reaching out to a friend, letting them know that we care and that they are on our hearts is a consolation.  What a comfort it is to receive a text, email, or phone call from someone who not only thought of you, but took the time and effort to let you know.

Comfort can also come in the form of encouraging those around us with the promise that the Lord is their help and He loves them with a steadfast love.  He is their refuge and their salvation.  As we gently and compassionately offer these words of hope, we are holding out to them the consolations of the Lord.

Offering consolation to those around us who are suffering allows them to see that they are not alone.  That in itself is often a comfort to their souls.  And as we care for them, let us pray that the Lord would use our feeble attempts and turn them into consolations that cheer their souls.

Sensory Processing Disorder

Sensory Processing Disorder.

It is real.  It impacts daily life.  All three of my boys have it.

I have debated writing these words publicly, as I realize that my boys may not want to have this label once they are older.  But the fact of the matter is, this is real life.  This is what we are dealing with right now, and it is what my boys will continue to deal with every day of their lives.  And hiding it does not help.  It will not make anything better.

On the other hand, I want to be sensitive, as one of my children is already aware of differences between him and other boys.  He is afraid to try new things, for fear that others will make fun of him if/when he fails.  Unfortunately, he has reason to fear.  He has learned from experience.  So he stands by as other boys run and play with skills that come naturally to them. Or he compensates by acting up to disguise his inability to keep up with his friends.  And this breaks my heart.

Every day we live with the negative impacts of this disorder.  Every day we face new challenges and discover new hurdles to climb.  Every day I pray that God will help my boys to overcome these great challenges that He, in His sovereignty, has seen fit to give to them.

While each of my boys is impacted by this disorder differently, I see many similarities between all three.

They are all sensory seeking, constantly on the go with a never ending motion and an inability to sit still.

One of my boys seeks sensory input to such an extreme that he is almost constantly seeking visual, vestibular, and oral input.  It is nearly impossible to provide him with enough input through therapy and other activities throughout the day in order to prevent him from self-stimming.

My boys are always seeking proprioceptive input, crashing into objects and people as they seek the deep pressure this provides.

They struggle with motor planning, making fine motor and gross motor skills difficult or even impossible for them to master.  With two of them, I also see struggles with motor planning affecting their speech patterns and feeding skills.

They lack an awareness of where their body is, and along with this comes a lack of coordination.

Containers affect them.  If a food looks different or is presented in a different way, they won't touch it.  In general, they are very sensitive to textures and tastes and as a result have limited diets.

Structure is very important to them.  If anything is out of the ordinary, it is difficult for them to adjust and spontaneously do something different.  I have learned that if we deviate from our daily routine even in the smallest way, it is very important to prep them beforehand on what we will be doing and what my expectations for them will be.

Loud or sudden noises startle one of my boys and send him running in a wild frenzy with his hands over his ears.

One of my boys seems to not notice even extreme heat or cold, his body unaware of the need to either bundle up or get out of the heat.  Another of my boys is bothered by even the slightest change in temperature, his body intolerant of any adjustment it might need to make.

They struggle to control their emotions, going from 0 to 100 in a matter of seconds.  Temper tantrums are a regular occurrence around here, with emotions raging out of control and boys unable to regulate their bodies once something has gone wrong in their environment.  I am often unaware that something is even wrong until someone is screaming.  And then it is a full-time job to help calm one child while trying to prevent the situation from escalating with other boys going into sensory overload from the noise and joining the fray with a meltdown of their own.

Therapy has been a godsend for my boys, and I am so grateful for all of the help their therapists have provided for our family.  We have many techniques, routines, and activities that we incorporate into our daily lives to help our boys as much as possible. And we hope and pray that over time our boys will learn how to individually incorporate these techniques into their own lives to better help them to regulate themselves as they grow older.

My prayer for my boys is that as they grow up, they will be able to fully function as boys and then men in society.  I pray that they will be able to develop and maintain friendships with their peers and interact with others in socially acceptable ways.  I pray that they will be competent in doing normal activities such as riding a bicycle, throwing and catching a ball, and playing sports at a recreational level.  I pray that this disorder will not affect their ability to succeed in school and then later in the work world.  But most of all, I pray that they will grow up to love Jesus.  I pray that in their weakness, they will find Him to be their strength.  I pray that their disorders will cause them to see their need for Jesus and that their dependence on Him will be even greater because of the struggles that they face.  May the very thing that causes them pain and sorrow end up being the tool that God uses to shape them into humble, godly men after His own heart.

I stood a mendicant of God before His royal throne, 
And begged Him for one priceless gift which I could call my own. 
I took the gift from out His hand, but as I would depart I cried, 
"But Lord this is a thorn and it has pierced my heart; 
This is a strange and hurtful gift which Thou has given me." 

He said, "My child, I gift good gifts and gave my best to thee." 
I took it home and though at first the cruel thorn hurt sore, 
As long years passed, I learned at last to love it more and more. 
I learned He never gives a thorn without this added grace, 
He takes the thorn to pin aside the veil which hides His face. 

 Elisabeth Elliott

Baby Steps

What does it look like to be a sensory kid?  For one of my kids, it is all about the container.  If it looks different, or feels different, he won't try it.

This means that we have been unsuccessfully trying to transition him from a bottle to a straw cup for six months now.  Last week, his feeding therapist told me that despite all of the speech issues that can come from a child drinking from a sippy cup, she has given up on transitioning him to a straw any time soon.  Instead she has settled on one particular sippy cup, which we now want him to at least try to drink out of.

With him being a sensory kid, we are thrilled with baby steps.

This is the bottle he currently drinks out of:

This is the cup we want him to drink out of:

So far, no way!  He won't go near it.  In an attempt to make this easier for him, we have mixed around the parts of the interchangeable cups, trying to help him slowly adjust to his new cup.  For a while, he would just sit with his cups, picking them up with a confused expression on his face and asking me over and over again, "milk?", "bottle?".  He would then put them up to his lips, say "mmm", and then put them back down again.

But after a week of hard work, we are very excited to say that he will now tolerate the following modification:

We still have a long way to go, but since we're measuring progress in baby steps around here, we're very proud of our little guy and how brave he was to try his new cup!

Valiant Warriors

This winter was filled with dangerous battles, moments of great valor, and narrow escapes.

Swords clashed, brother fighting brother.

And it was discovered that our youngest son has great skill wielding a sword.

I can only imagine the battles that will ensue once the swords are sent outside for the summer.  Good men will fight valiantly.  Bad men will be conquered.  Mommy will be protected.  And evil will once again be defeated, making the world a safer place.