Day By Day

After Marcus was diagnosed in 2007, I didn’t know how life could go on as normal.  How we could continue to live our daily lives and smile through it was a mystery to me.

But indeed, life continued on and we’re still going strong with “normal”.

Maybe even better than normal.

And as our kids carry on with their typical kid activities, I find the normal things they do seem peculiarly more special to me.

Sometimes I wonder if they sense the perpetual heaviness in our hearts.  Perhaps they do, perhaps they don’t.  In either case, they seem like they’re doing alright.

And although I can lose myself in spirals of Mommy Guilt for not doing this or that for them, I know in my heart that they are blessed beyond measure.  For the Lord holds them and their parents in His giant, safe, powerful, loving hands.

From Loathing To Boasting

Since he was 5 or 6 months old, Marcus has received multiple types of therapy.  We are ever so thankful for all the people who have come into our lives to help with Marcus’ development.  Because of these services, we’ve had things in our home that I never thought we’d have, and some that I never even knew existed.  We’ve had 3 different types of walkers, ankle/foot orthotics, benches, parallel bars, oral-motor tools to help with his speech, brushes for sensory integration, scooter boards and balls and bolsters for vestibular and proprioceptive stimulation, the list goes on and on.  To me, all of these things have symbolized growth, progress, and development.

But there is one thing in our home I loathe.  It symbolizes decline, reversal, and greater suffering.

Many of don’t even know what this is.  I wish I didn’t either.  It’s a brailler.  Marcus’ retinitis pigmentosa, which some people with Joubert Syndrome have, is a degenerative vision condition.  Our doctor told us that Marcus will lose his vision, although at what pace and to what degree we are unsure.  Because of this diagnosis, we have pushed for vision services through his school (albeit reluctantly), so that someone can teach him braille in preparation for this vision loss.  Thus, this ugly, heavy, evil contraption in our home.

Don’t be fooled.  Marcus is smiling in this picture, but he doesn’t like the brailler either.  His vision teacher is the only person that ever tells us that Marcus is unmotivated or uncooperative.  He hates practicing it because it’s hard and very irrelevant for him right now.  He probably thinks to himself, “Why in the world do I have to press these heavy buttons just to make tiny little dots on a piece of paper?  What is the point of all this?”

I was going to devote this entire post to how much I abhor the brailler until I read this post by a father suffering way more than me, taking care of his daughter who has been battling cancer.  Regarding what kind of future he is afraid of, he says:

The concern that lurks on the horizon for me is that comfort would return…Yes, I want this to be over – I want normal. Yes, I desire something that is not constant. Yes, I would love to look at my daughter with hair and have friends over, and not go to clinic and a million other things we used to have.

HOWEVER

Normal is not what has caused us to love Jesus deeply. Comfy couches, well maintained cars, juicy burgers, and health are not the ingredients for perseverance. Predictable and visible are not what comprises HOPE and FAITH. So, while I desire this to be over and have a return to life as we once knew it – with a far greater degree of purpose and intent I don’t want it over. I look on the horizon and I see that the removal of trial and suffering brings with it the potential for comfort and that scares me. I want to, as Paul says, “know you in your suffering.”

Maybe you too echo with me this concern: “Lord, don’t remove affliction simply because it is hard, give me a reprieve that I might catch my breath before I go deeper into knowing YOU!”

My heart stirred as I read his words and realized that there is a sliver of my heart that feels the same way.  I would do anything to find a cure for Marcus, a magic potion that would take away all of his challenges.  But would I take away the hardship that has turned out to be so precious and sweet to my soul?  No.

Mike and I often wonder what we would be like if Marcus were completely healthy.  And considering how prideful we still are now, we don’t even want to “go there”, imagining how self-sufficient and even more arrogant we’d be.  Although we ache daily for our son, seeing him face so many difficulties and more to potentially come in the future, we are grateful that the Lord has gently and lovingly led us to the valley.  We see our Savior a little clearer than we would if perched on the peaks.

My prayer is that instead of loathing the brailler and everything it symbolizes, I can boast in it.  To have the attitude of Paul who recalled,

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.  (2 Corinthians 12:9)

Rather than wanting to spit on it, smash it to pieces, and drop it from a 10-story window, perhaps I should give it the place of honor in my home, displaying it as one of my treasured possessions.  After all, it symbolizes God’s grace in my weakness and His desire to reveal even more of His love to us.

Groanings Of An Angry Mom

Anger.  I wouldn’t say that anger makes an appearance very often in my heart.  In regards to Marcus, it’s usually sadness, grief, anxiousness, and worry.  But this week, I was angry.

Several more kids with Joubert Syndrome have passed away recently.  Several others have been hospitalized due to various reasons.  Not only that, but many “healthy” ones are struggling with extreme behavior and emotional issues, leaving their families grieving for them all over again.

I thought about these precious ones, their heartbroken families, and looked at Marcus and I got angry.  Angry that JS has to be in our lives, angry that my son faces challenges in virtually everything he does, angry that we have to check his organ function every year, angry that we have to teach him Braille because he could be blind one day, angry that he can’t say what he wants to say, angry that he’ll be teased, angry that he can’t walk, angry that we have to fear losing him.  Marcus gets frustrated because he can’t do simple things the way he wants to.  Sometimes he’ll throw a book if  he can’t turn a page fast enough.  And as much as we want to teach him to be patient and ask for help calmly, inside, I can’t blame him.  In fact, I want to throw the book across the room for him, sweep him up in my arms, and cry with him for hours because I’m angry with him, for him.

When Marcus was diagnosed, Mike & I died.  Our son died too, or at least the life that we thought our son would live.  Don’t misunderstand.  We over-joyously celebrate Marcus’ life today.  In fact, we probably celebrate MORE so, in light of his diagnosis.  But it doesn’t change the fact that the life we thought we would have with him died.  And we mourn over it still.  This death has forever changed our lives and the way we see this world.  It’s like a child realizing that Disneyland is a marketing sham and that behind the walls of Small World are rats and cobwebs, and that Mickey Mouse is actually a guy who, after taking off his suit at the end of the day, deals drugs and beats his wife.  We can never again be frivolous.  Life for us will never again be all butterflies, balloons, and lollipops.

People say that death and suffering are just a natural part of life.  But to me, there is nothing “natural” about suffering.  You can’t tell a woman that it is “natural” for her to be born with ovaries and yet not be able to bear children that she longs to call her own.  It is not “natural” to raise children with lifelong physical and emotional disabilities because their biological mothers used drugs and alcohol while pregnant.  There is nothing “natural” about giving birth to a healthy, bright, sweet son whose body starts to deteriorate and then dies before he turns 3.  There is nothing “natural” about seeing your husband or your father painstakingly take each breath, lose his ability to speak or eat, become blind, and have brain aneurysms before dying.  This is just not how God created things to be!

I was surprised to find that this week, it wasn’t God’s kindness, His mercy, and His promises to love us that comforted my heart.  Facing my anger, I was drawn to a different aspect of His character… His wrath.   It dawned on me, through the Holy Spirit, that God is angry too.  And my anger is a teardrop compared to the raging torrents of the ocean that is God’s.  Anger is as much a part of God’s character as are His love and grace and it was good for me to remember that.  To me, it was my Disneyland that crumbled down.  But for the Lord, it was His Eden, His creation that once was “good”.  What He had created to be beautiful has become horrifying ugly.  Of course, He is angry.  He is angry at Joubert Syndrome too.

Some people have a hard time believing that God can be simultaneously angry, good, and in control of all things.  But for some reason, He’s given me faith to believe that He indeed can.  He’s allowed me to believe that He didn’t direct His anger at all of us who deserved it.  He loved us while still sinners and instead, unleashed the ocean of His wrath onto His perfect Son.  Jesus bore the guilt of all of our sins, and even the most horrifying ones we’ve heard of that I can’t even dare to write on this blog, were put on Him.

Jesus bore my shame so I wouldn’t have to.  He felt the full force of God’s anger so I wouldn’t have to.  And yet, for now, we still live in this fallen world.  I think I’ve finally understood the “groaning” of creation that Romans 8:20-23 talks about.  My heart used to and still longs for all I’ve wanted for myself in this life.  But now, I’ve moved a little beyond that to longing for God to restore all things from the “bondage of corruption” to “glorious liberty.”  I yearn for Him to make all things new and for Him to take the seat of honor in ruling over all of creation with His glorious beauty, where there will be no more disease, no more death, no more tears, no more Joubert Syndrome, no more any syndrome.  I know that even the sweetest things of life are only tainted knock-offs of the true joys of what is to come…how things should be.

Am I still angry?  Yes.  There is a refreshing release in being angry.  Am I hopeful?  You bet.

“…we ourselves groan within ourselves, eagerly waiting for the adoption, the redemption of our body.  For we were saved in this hope, but hope that is seen is not hope; for why does one still hope for what he sees?  But if we hope for what we do not see, we eagerly wait for it with perseverance.”

Romans 8:23-25

 

Thankful Thursday – Marcus’ Milestones

Whenever we think about Marcus, there is a constant tick tock that plays in the background.  Although we never know what will happen tomorrow to any of us, there is a sense that there looms an inescapable cloud over Marcus’ future.  Vision loss, kidney failure, and emotional pain are very real fears we face.  So when we catch ourselves staring at our Champ with these possibilities, we are reminded to be thankful for today.  And so, we are bountifully grateful that right now he is happy, healthy, and daily reminding us of God’s goodness.

In spite of Marcus’ delays and differences, or I should say, BECAUSE of Marcus’ delays and differences, we look at him and think we’ve won the lottery.  Tomorrow is a scary unknown, but today, Marcus is doing wonderfully.  Here are a few things we’ve been marvelling at lately:

Music

It’s become quite obvious that Marcus lives and breathes music and that he is a musical genius.  He recognizes Beethoven versus Mozart and can tell us all the instruments he hears in a piece of music.  Not just drums, guitar, piano, violin, etc.  We’re talking cymbals, oboe, flute, cello, trumpet, tuba, clarinet, and many more!  He also (like Audrey) has incredible auditory memory and knows exactly where he’s heard a particular measure of music before.  So needless to say, he thoroughly enjoyed the first piano lesson I gave him this week.  Thanks to Mike’s mom who already taught him Do-Re-Mi while she was here!

Speech

Marcus’ speech continues to improve and we feel that he can communicate with us what he needs and wants, at a basic level.  And boy, has it helped his frustrations!  I remember writing this post, so perplexed by Marcus’ daily difficulties, and now I’ve realized how much his communication deficits played into that.  The other day, he was playing with my iPod when it suddenly lost battery life and shut down.  Instead of hurling it across the room, he quietly repeated, “Not working, not working” until I came and plugged it in for him.  I responded with a “Thank you, God.”

What joy it is also to hear him tell me what he did at school!  It amazes me that on the way home, he can tell me what toys he played with, which therapists and teachers helped him, what he ate for snack, who he played with, and even if he took a fall and got a boo-boo.  He also tells us what songs he sang at Sunday School.

It’s also sweet to hear him try to console Derek when he’s crying by saying, “It’s okay, Baby.”  But he’ll use that same line when he purposely pinches Audrey, makes her cry, and then sarcastically says, “It’s okay, Noona.”  Why that little…

And of course, there’s his sense of humor:

Me:  Marcus, is there pee pee in your diaper?!  (a bit annoyed because we’re trying to potty train)
Marcus:  (pause)  Maybe

Sensory

Up until the last 8 to 12 months, going out with Marcus was very tiring.  He thrashed about in his carseat during red lights and did the same when idle in his stroller.  He was also very impatient in his highchair at home, at restaurants, and during snack time at school when his food didn’t come right away.  But for some unknown reason, something clicked and he calmed down.  We rarely use the DVD player in the car anymore and he’s even fallen asleep during long rides, which is a miracle!!  And now we can put him at the table and he can sit there patiently for minutes.  SO thankful!  There are still a few other sensory issues he deals with, but are praying for improvement in those areas as well.

Fine Motor

Marcus’ OT at school had to write 2 new goals for him because he already met 2 annual goals within months of starting school.  It’s amazing watching him draw shapes and happy faces and gain strength in his fingers.

Pre-Academic

He also reached a few of his classroom goals early, so now, his pre-academic skills are age appropriate or above.  The only areas of deficit now, are speech-related.  It’s alright…it’s good to keep the smarty pants humble.  🙂

Walking

Although not walking independently yet, he is gaining more of his balance while standing for a few seconds at a time on his own.  We are also able to walk while holding one hand and giving him support with the other.  On the walker, he is getting a lot better at turning corners  and gets so proud of himself for it.

We took a walk around the neighborhood this week and it was a treat watching him explore.  He’s got a thing for plants and flowers and insists on smelling everything.

(yes, he’s smelling grass)

If you told me 5 years ago that we’d have a son with a brain abnormality that caused a speech delay, sensory processing difficulties, a vision impairment, and that even at 3 and a half years old, he wouldn’t be walking independently but that we’d still be thankful, I would have thought you were smoking crack.  If you told me during the first dark 2 years of this journey that we would eventually have peace and joy in our hearts, I still would have thought you were smoking crack.   Don’t misunderstand.  We still deeply mourn over our son.  But the grief is often held up by our Father’s promise that He’ll continue to take care of us if He’s already given us His Son (Romans 8 :32).  And He is taking care of us.  He’s taking care of us today and won’t forsake us tomorrow.

Much Of You

Saturday night, my heart tossed and turned a bit.  Each contraction made me realize that our baby would be coming soon and that we would know within a few months at most, what the Lord’s answers to our prayers would be.  Anxiety crept in, which led me to ask questions that I really didn’t need to ask:

“Will my heart be broken again?  Will I survive seeing another precious son endure challenges for the rest of his life?  How will I hold the pain?  How will we make it financially if we have to fund therapy and medical care for 2 children with special needs?  How will we be able to adequately care for these children, especially if our next is more severely affected?”

On Sunday morning, the Holy Spirit moved in my heart through the lyrics of a song we’ve sung many times before:

How could I stand here and watch the sun rise
Follow the mountains as they touch the sky
Ponder the vastness and the depths of the sea
And think for a moment the point of it all was to make much of me

‘Cause I’m just a whisper and you are the thunder and

I want to make much of You Jesus
I want to make much of Your love
I want to live today and give You the praise
That You alone are so worthy of

I want to make much of Your mercy
I want to make much of Your cross
I give You my life
Take it and let it be used
To make much of You

It struck me that all my “What about me” questions the night before were very much like the first verse of this song.  I was essentially looking at God’s work in this world and wondering how it revolved around MY wants and desires.  The chorus reminded me that God’s work in this universe has more to do with magnifying His Son than in fulfilling my agenda for my life.

My friend Alice shared something during our care group several weeks ago that I haven’t been able to let go of.  She shared her insights into passages in Ecclesiastes;  that there is nothing we go through that is new under the sun, and that God is God and He is the Lord.  He does what He does and our response is to fear Him.

This challenged me to avoid the temptation to glorify my lot in life and the particular trials God has handed me.  It’s so tempting to see the world through the lenses of what I’m going through, rather than realize that perhaps God has His own intentions and plans through the things that go on in my life.  That perhaps there is a greater spiritual realm that I’m unaware of, just like in His dealings with Job.  (Not that my life can compare in any way to Job’s.)  And that my life and trials are nothing too unique in the whole scheme of God’s plan for the entire history of His creation.  Perhaps the details of my life are only  microscopic pieces of a huge puzzle that God has beautifully crafted to magnify the incomparable glory of Christ.  And here I am, thinking so much of my own life and wanting everything to go my way.

And yet, I also can’t escape that my Father deeply cares about my most private cares and concerns while He holds the universe together in His hands.

Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you.  ( 1 Peter 5:6-7)

As much as He cares about famines and earthquakes and floods, He cares about me and all the big and little anxieties that fill my heart.  So while He holds the world together and orchestrates all events in His infinite and transcendent wisdom, He also wants me to cast my anxieties on Him because He cares for me as His very own.  And He loved me so much that He he had the worst affliction poured on His Son so that any trials I own here are at worst, “light” and “momentary” and at best will prepare us for “an eternal weight of glory beyond all comparison.”  (2 Corinthians 4:17)

So all I can do is stand in awe.  My Father is transcendent and beyond comprehension and yet fully interested in the details of my soul.  He orchestrated the history of the world to put Jesus in our hearts.  And what a cost it was to Him!  Today, this is my prayer for myself and for my family: that God will loosen the grip we have on our own lives and that He will use our joys and trials to make much of Jesus.

Anticipation

This week, we’ve started shedding and reorganizing to make room for all the baby stuff.  All this physical preparation is a lot of work, but doesn’t compare to the emotional and spiritual preparation ahead.

So far, the ultrasounds have been very encouraging.  But as I’ve mentioned before, we don’t really know for sure if the baby is healthy.  We never did an amniocentesis to rule out Down Syndrome, and we never got a fetal MRI to find the molar tooth sign that indicates Joubert Syndrome.  This means that all we can do is pray and wait and see what the Lord has in store.

I have faith that no matter what, Jesus will be there.  Even if our worst fears come true, I trust that He will be there.  However, what I’m fearful of is my own heart.  I’m scared to see what will pour out of my soul if we face more challenges with this baby.  I remember the things I felt and the things I said during the darkest times with Marcus:

“I know God is using this for good, but I don’t want what He wants.  I don’t want Jesus.  I just want my baby to be okay.  Why is He doing this to us, to our son?  Why is He ripping my heart out?  Is He just trying to prove a point with me that He’s sovereign?  Well I don’t care.  I just want my son to be okay.  God doesn’t love me, He just loves His own agenda.”

I remember feeling so bitter at my Lord.  I thought it was cold-heartedly cruel of Him to inflict this pain, and yet to see Him ask me to “Consider it all joy when you face trials of many kinds” and to “Rejoice in the Lord always.”  I loathed passages of scripture that asked me to respond to my trials in seemingly impossible ways.  His word burdened me and made me feel even farther away from His love.

But His Spirit gently reminded me of Romans 8:32

He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things?

My Father reminded me of His indescribable love shown through Christ.  While I was holding Marcus against my heart, He reminded me that He rejected His own Son.  He crushed Jesus, bruised Him, and abandoned His perfect beloved One at the cross while He bore all of my sin.  So if He gave up Jesus for my sake, why wouldn’t He also lavishly provide everything else I need to live this life unto Him?

It was then that I threw my hands up to say, “Lord, if You want this trial in my life, You must also be the one to give me the faith to trust you through it.  I cannot possibly respond rightly or have joy in all of this.  So if You gave me Jesus, You must also give me the joy in the midst of this pain.  You must be the one to carry me through because I cannot survive this on my own.  You gave me the most precious gift of your Son to save me.  So please, Lord, please provide whatever else is necessary to grow in His grace.  I desperately need You.”

And you know, the Lord answered abundantly.  He’s allowed us to say, “Jesus is better” because through the heartache, we’ve known more of His love.  We’ve been able to cry out with David, “Because your steadfast love is better than life, my lips will praise you.” (Psalm 63:3)

So why am I so anxious about how I’ll respond if this baby faces his own challenges?  It’s because I know the depth of my sin and idolatry, how quickly I desert the One who gave Himself for me, and how easily I forget that Jesus is more than enough.  And so, I pray that the Lord will keep me near the cross and utterly take over my heart because I’m too weak to give it up to Him.  I pray that I’ll remember how He’s generously supplied “all things” and will continue to do so.  He abandoned His Son, but He’ll never abandon me.  Lord, may Your Spirit cause me to remember that.

Acquainted With All My Ways

God has blessed us immeasurably with family, friends, and a church body who love us more than we deserve.  They have carried our burdens with us and have done so much to shower us with love and support as we go through the ups and downs of caring for Marcus.  We couldn’t have asked for more love from more people.  I could devote a whole week’s worth of posts to all the ways our friends and family have cared for us.  They have fed us, housed us, prayed incessantly for us, emailed us, sent us thoughtful cards, visited us, and cried with us.

At the same time, there’s a yearning to have people in our lives who are going through what we’re going through.  People who know the exact heartache we bear.  We’ve found great friends through the Joubert Syndrome group and through Marcus’ school & therapy, and God has really met many of our needs through them.  But among people we already know, there is not one family who is raising a child with a diagnosis similar to Marcus’.  At our church of 100+ kids, Marcus is the only one facing his types of challenges.  Considering the statistics, this is a very rare situation.

We would never want any of our family to have to bear the struggles of special needs and we don’t wish this type of suffering on any of our friends.  Yet why is it that I desire for someone to go through the trenches with me in this world of disability?  I feel that God created us to have this longing for shared experience; to have a common union with others who are going through the same thing.  That must be why there are so many support groups out there for people to find others they can relate to.

I could sit in a room surrounded by hundreds of close family and friends and at the same time feel that nobody can truly understand the weight that is on my heart.  I’ve often felt like an alien and desperately lonely in large groups because there isn’t someone who can say, “I know exactly how you are feeling about your son right now because I’m going through it too.”  But for some reason, God has sovereignly and lovingly not provided that for us at this time.

The truth is that everyone in this world can feel this type of loneliness at some point in their lives.  We all have some issue that we feel is far removed from the common experience.  Yes, I have a son with disabilities, but I have never known the trials of losing a spouse or a child, being in and out of the hospital, battling infertility, living in poverty, facing discouragement on the mission field, living under abuse, or being persecuted by family members for my faith.  Amongst a group of people where I feel like no one truly understands me, the person to my right could be feeling exactly the same way.

Yet what I’ve realized is that having this “lack” in my life is actually a blessing I couldn’t have asked for.

O Lord, you have searched me and known me!  You know when I sit down and when I rise up; you discern my thoughts from afar.  You search out my path and my lying down and are acquainted with all my ways.  Even before a word is on my tongue, behold, O Lord, you know it altogether.

Psalm 139:1-4

When I have a thought that I feel like no one around me can relate to, my Lord is right with me and He is intimately acquainted with all the aching crevices of my heart.  When I can’t explain why I’m sad, my Lord is here and knows my heart better than I even know it.  When I feel like an alien because my experiences are so different from others’, my Lord reminds me that He created me and understands my thoughts from afar.  And not only from afar, but my Lord also became a man so that He would be able to know the whole realm of human disappointment and grief.

Knowing this gives me a sense of great privilege.  It reminds me of intimate secrets between a husband and wife that nobody else is privy to.  All these experiences of “No one in this room understands me” can now turn into “The Lord knows exactly how I’m feeling right now and He is with me and loves me.”  This is a unique encouragement that I am so thankful for.