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.

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)

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.

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

Wish Us Luck!

Staycation 2013: Day 5

Staycation 2013: Day 4