Thursday, December 5, 2013

Christmas Play Scheme

The Christmas season has always been my favorite time of year.  With the sparkling lights, brightly decorated homes and stores, jingling music, and beautifully decorated cookies, each day is filled with excitement and anticipation.  But in the midst of all the excitement, I want my children to know who it is that we celebrate each Christmas and why we celebrate Him. Even more than the anticipation that builds up in their little bodies as they wait to open their Christmas presents, I want them to long with anticipation for the day when they see Jesus, their Savior, because they have learned about and rejoiced in God's love for them from the beginning of time, His promise to send a Savior, and His promise kept when He sent Jesus to be born a stable that glorious day.  Christmas is the day that God came to dwell with us, to keep His promise, and to give us eternal hope and joy.

I would like to take some time this Advent season to share some of our family traditions as we seek to keep Jesus at the center of this holy day even in the midst of the singing snowmen and twinkling lights that are so quick to catch my boys' attention.

When Zach was younger, one way that we would tell him the Christmas story was to re-enact it using the Fisher Price nativity set.  This year we discovered how we can do this with Wesley as well.  In school this fall, his teachers discovered that he does a good job of learning new play schemes when presented with visuals to guide his play.  We decided to implement this same strategy to help him act out the Christmas story using the nativity.

Each night, after reading the Christmas story to the boys, we pull out our visuals and walk Wesley through the play scheme.  As soon as he sees the visuals, he gets excited to act out each step.  He quickly starts searching for the angel and Mary so that he can begin to play. Right now, he needs significant assistance to act out the story, as this play scheme is much more complex than the play schemes he normally learns.  But it is my hope that not only will he be able to independently play through the entire play scheme by Christmas day, but he will also begin to understand the Christmas story as we talk about it each night.  Perhaps Jesus Himself will open Wesley's eyes to a childlike understanding of who He is and how much He loves Wesley.

Will you join me in praying to that end?

Friday, November 29, 2013

Juggling Life and Other Thoughts

After over a month of silence on my blog, it seems hard to come back.  These past few months have been a season of survival, with little reflection taking place. To just get out of bed each morning, accomplish everything that must be done that day without even tackling my long to-do list, and make it to the end of the day when I can fall back into bed and get a few hours of rest before starting all over again is considered a success.  I feel like I have been handed a full set of china dishes and assigned the task of juggling them.  Handling fine china is a delicate task, and juggling with it just seems plain foolish.  But yet, this is the lot I have been assigned in life, so this is what I do each day.  And each day, it seems, I drop at least one plate, pick up the pieces, glue it back together, and try again.

My mind is numb.  I struggle to process thoughts and conversations.  I find myself sluggish, moving more slowly than normal and unable to speed up.  My mind seems slow too.  The headaches are constant, a steady drone filling my head and lowering my tolerance level for all things loud and whiny. I am still going, putting one foot in front of the other as fast as possible, but it just feels like my body is trying its best to shut down.

In the midst of this, sitting down to write seems daunting.  But yet, there are so many things I wish I had taken the time to write down, to remember, this autumn.

Zach's birthday - his seventh.  He has walked through a very difficult year, and the scars are evident, but he strong, and I hope resilient.  I pray that God will restore his soul.

The turkey Wesley made at school on the day I observed - how he initiated going over to the art table during center time, cut the circle out - with scissors - all by himself, followed instructions, and completed the project.

Liam's birthday - his second.  Oh how I adore this boy.  His joy is a ray of light in the darkness.

Wesley's school placement this year, and how I visibly saw God's hand at work, changing hearts, moving mountains.

An update on Liam's development.  These past two years have opened my eyes to the struggles of families who have family members with invisible disabilities.  While Liam does not have a disability, his struggles are very real, and very invisible.  It is difficult to advocate for a child whose needs are not seen by the untrained eye.

Wesley's words, and phrases, and diction, and counting, and using visuals to learn new play schemes.

God's healing of Wesley's ears - it was a very unremarkable healing, but an unexpected gift nonetheless, which prevented the need for a fifth surgery.

My thoughts about my lot in life, what I had imagined or dreamed my life would be, and where it is.

Our photo shoot this spring with a photographer from Easter Seals - what an honor to be selected to have a photo of our boys prominently displayed in the entrance to our therapy center.

The miracle I witnessed - I who did not believe in miracles, or at least not miracles performed for me or those nearest and dearest to me.  As Leif Enger says, "No miracle happens without a witness.  Someone to declare, Here's what I saw.  Here's how it went.  Make of it what you will."  Someday, I want to take the time to open my heart, to share our miracle, that others can see what God has done and make of it what they will.

Our photograpy session this fall with a dear friend, who beautifully captured photos of our family, perfectly catching the personalities of each of our boys.

Potty training - successes and failures and where we are now.

Forgiveness.  Some things are hard to forgive, but the Lord is continuing to work on my heart, and in the process showing me more of who He is.  He keeps count of my tossings.  He puts all my tears in his bottle.  This I know, that God is for me.  My sufferings grieve him.  He sees them. He does not forget.  And vengeance is His; He will repay.

Perhaps someday I will go back and add to these thoughts.  For now, my goal is to enjoy the Christmas season with my family.  We have much to celebrate this year.

Friday, October 4, 2013

His Perfect Way In The Storm

"This God - his way is perfect; the word of the Lord proves true; he is a shield for all those who take refuge in him. For who is God, but the Lord? And who is a rock, except our God?" Psalm 18:40-31

It doesn't seem like my circumstances are good right now, and as I look around, it appears as if things are falling apart. But I can trust that God's way is perfect. He says it is, and His word proves true. Even now, I can look back and see how God has provided for us in the past and how His word had always proven to be true. He has been faithful to us, given us new mercies every morning, and showered us with His steadfast love. And that hasn't stopped today. And it won't ever stop.

As I look around at my circumstances and fear rises within me, I quickly realize that there is nowhere else to go, no one else to whom I can appeal. There is no rock except our God. Health is not a rock I can stand on. Job security is not a rock I can stand on. Respite from the hardships of life is not a rock I can stand on. But as I stand on Jesus, my solid rock, He will be a shield and a refuge for me. This doesn't mean the waves won't still crash on the rock and lap at my feet, and the rain won't still pour down on me. But my feet are steady on the rock, and my body is shielded from the rain.

I have found refuge in the Lord, and in Him my hope is secure. 

Oh Lord, help me to quiet my soul, be still, and wait patiently for you. Calm my anxious thoughts. For you will not allow me to be cast headlong. You will uphold my hand. (Psalm 37)

Saturday, September 28, 2013

Suffering and God's Goodness

"Why does God create babies that have disabilities, or that can't live?  Why would He do that since He loves his people?"

This was the question I heard from my six year old's lips one night at the dinner table.  This was the question I struggled to answer as tears streamed down my face.  This was the moment I had been waiting for, but yet my heart was crushed within me as I struggled to answer his question.

Four years ago, when Wesley was born, Zach was only two-and-a-half years old, and he had no idea that there was anything different about his brother.  Sure, he noticed that we now went to countless doctors' appointments and that therapists often visited the house to spend time playing with his brother, but to him, this was his new normal.  Didn't all babies receive therapies to teach them how to do new things?  Didn't all babies visit multiple specialists to closely examine every part of them and address health concerns?  Even as Wesley grew older and his differences became obvious to others, Zach never seemed to notice.  He loved Wesley for who he was and was oblivious to the fact that other children his age had far surpassed him developmentally.

But this past year, Zach's eyes have begun to open to the reality that his brother is different.  He has been listening to the adults around him discuss his brother for four years now, and as he grows up, he is beginning to understand everything we have been talking about.  A few months ago, as Wesley was stimming, my head turned sharply in surprise as Zach casually said "Wesley does that because he has special needs."  Thus began our conversations about how God creates everyone different.  We have discussed how God creates some people that are tall, some people that are short, some people that learn things quickly, and some people who need extra help and time to learn things.  Then we talk about how God loves everyone and how He creates everyone exactly the way He intends.  We are all fearfully and wonderfully made.  God has not made any mistakes.

These are easy topics to discuss when the conversation is generalized.  I have had many opportunities to talk with Zach about being kind to others who are different than us, being patient with others who do not learn things as quickly as we do, and loving others even when their differences annoy us.  The conversation is much more difficult when we talk specifics.  My own faith is tested as we talk about Wesley and as Zach asks specific questions about what these delays really mean for him.  Do I really know that God's works are wonderful?  Does my soul know it very well?  I often fight back tears when Zach discusses the future, casually mentioning things such as "you will be a grandma when Wesley and Liam and I have children".  My heart is crushed within me as I sadly smile at him, not ready to give him the full picture quite yet.  He will know soon enough.

But none of these conversations have been as difficult as the night that Zach asked me why.  I listened to the trust in his voice as he asked these questions with the faith of a child. He was not accusing God of anything, but seeking to understand, in his young mind, why the God that he knows to be good and loving, and who creates all things fearfully and wonderfully, would choose to create a child in such a way that they would suffer or even die.  And as I tried to answer my son, stumbling over the words, I wept.  In that moment, it felt as if I had a minute or two to explain God's goodness in the midst of suffering in words that a six year old could understand, but no words were sufficient to the task.  Nothing felt adequate.  So, I stumbled through answers about the effect of sin in this world, the promise that God will work all things for good, and the truth that really, I just don't know.  I don't know why God creates babies with holes in their hearts, non-functioning or deformed organs, life-threatening diseases, and other physical and cognitive disabilities.  I don't know why He created Wesley with a chromosomal abnormality either.  But, I do know that God is good.

And so, that's what we talk about, Zach and I.  I don't know what the future holds.  I don't know why God has allowed Wesley's specific sufferings.  But I know that God is good.  I believe this with all my heart.  And, more than anything, I want Zach to believe this too. Disability will be a part of his life, so I pray that even though he may not understand the whys of disability, he will trust that since God has formed Wesley's parts, knitting him together in his mother's womb, this means that Wesley is fearfully and wonderfully made.

For now, when Zach speaks about Wesley's special needs, he speaks of them in a matter-of-fact way.  Disability doesn't pain him or make him think any less of Wesley.  It just is what it is. But I hear a tenderness in Zach's voice when he brings up this topic.  For example, just this week, as we observed one of Wesley's therapy sessions from the two-way glass, I saw a look of concern come into Zach's eyes as he saw Wesley's therapist pull out something new and set it up.  He turned to me with apprehension and said, "That is too hard for a four year old with special needs. Does Miss Jess know that Wesley has special needs?" His heart of compassion and love for his brother is beautiful, and his innocence as he asks these questions touches my heart.

As Zach grows older, his innocence will fade and the realities of disability will set in.  But I pray that when they do, his trust in God and belief in God's goodness and perfect plan in the midst of disability will remain.

Saturday, September 7, 2013

Joy and Pain

A dear friend recently said that enormous loss tears a person into two.  It divides the heart so that no emotion will ever again be whole and unmixed.

As I sat on our deck this afternoon, enjoying the laughter coming from my two little boys playing together, these words rang in my ears.  You see, this was the first time I watched their roles completely flip, the older following as the younger led.  My boys had been playing a game in their play house, darting in and out of the front door and slamming the shutters on the windows open and closed as they played a wordless game of peek-a-boo. I was lost in my thoughts, listening to them giggle together, when suddenly I realized Liam was climbing the steps of the deck, holding a broken-off shutter, and saying "Mommy, help! Window! Fix it!" Wesley followed close behind, watching his younger brother closely with his head cocked to one side.  Looking at the two of them, I was so proud of my younger son for taking initiative, coming to me for help, and verbally asking me to do something rather than just screaming. Since he watches his older brother so closely, seeking to imitate every move of the brother he so very much adores, we are working hard to remind him to talk to us when he needs help rather than just yelling.  And today, he did.  He ran across the entire yard to ask me to help him fix his problem.  He even brought the shutter just in case it wasn't clear.

But even as my heart filled with joy, delighting in how my younger son was not only taking the lead in coming to me for help but also setting a beautiful example for his big brother, I also felt that deep, throbbing pain creeping back up to the surface as I looked past my precious baby and into his big brother's eyes.  The confused but yet trusting look in my big boy's eyes pierced my soul as my heart broke for him once again.  It felt as if I was watching a pivotal moment, where big brother was relinquishing his role to little brother, realizing the tide had shifted and it was time.

As I watch my boys grow up together, I am sure that this divided heart will become a constant fixture within me.  Joy will often be pierced with sorrow.  There is just no way around it.  It was never supposed to be this way.  This was never supposed to happen.

Jesus, give me the strength to walk this road.  Some days it feels as though my heart will explode with pain and grief before I ever reach the end.  Do not let me lose heart.  Help me to keep my eyes on you, trusting that you will uphold me.  My broken and divided heart is in your hands.

"So we do not lose heart.  Though our outer nature is wasting away, our inner nature is being renewed day by day.  For this slight and momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal." 2 Corinthians 4:14-16

Monday, August 5, 2013

Saturday, August 3, 2013

Thursday, August 1, 2013

Wednesday, July 31, 2013

Staycation 2013: Day 3

Zach brought his notebook today, "So I can write down anything that catches my interest."

The boys got a big kick out of playing with the friendly donkey.  Wesley loved to back up to the fence and then have the donkey nuzzle him in the back.

Riding the carousel is so much fun!

Liam couldn't leave this statue alone.  He was fascinated with the little boy just his size.

Tuesday, July 30, 2013

Staycation 2013: Day 2

The highlight of our trip to the zoo today was, of course, the dinosaurs.

I even caught Wesley roaring as he imitated the T-Rex.

Liam was delighted at every turn.  We got lots of "ooh"s from him as he discovered live versions of all his favorite animals.

Monday, July 29, 2013

Staycation 2013: Day 1

It's real life, folks!  As much as a smiley vacation picture would be cute to see, we really just spent our day being the water police.

But for those of you looking for some cute (and mostly not posed) pictures, we have a few of those as well.

Wednesday, July 24, 2013

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.

Wednesday, June 19, 2013

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

Thursday, June 13, 2013

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.”

Saturday, June 1, 2013


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.

Monday, May 20, 2013

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

Thursday, May 16, 2013

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!

Friday, May 10, 2013

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.