Sad

I normally don’t blog when I’m sad.  I usually journal about it privately and wait till the joy creeps up again to blog about the sadness in hindsight.  But today, for some reason, I just feel like being a little more raw before you, my family, my friends, people I know but have never met, people I don’t know at all.

The other day, Marcus and I were reading about Jesus healing the blind man.  I asked him if it was easy for him to see or hard for him to see like the blind man.  He said, “Hard.”  Then he said, “I can’t see in the dark.”  For the past 6 months to a year, Marcus has been saying more that he’s scared of the dark and that he can’t see in low light conditions.  This isn’t surprising considering his Retinitis Pigmentosa.  But we can’t help but wonder if it’s getting worse, or if it’s that Marcus’ speech is just emerging enough for him to express to us what he’s been seeing or not seeing all along.

In any case, it’s a rude reminder of what the doctor has told us…that Marcus’ eyes have very limited function and that he will eventually lose the vision that he has.

I’m so sad.  I ache. I feel weak and burdened. My heart is weary from all that Joubert Syndrome entails and how it’s affecting all the other families we know.  I wish the Lord would come right now to take us to our eternal home, where Marcus will be able to run, sing, jump, and SEE the beauty of His maker.  I long for Him to come and rescue me from this perpetual burden, to take me to where He is, so I could just lay in His arms and worship and rest.

Praying the Lord will keep me convinced of this promise:

For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

– Romans 8:38-39

My sister sent me this Charles Spurgeon devotional and I was encouraged by it:

A Child of God is not expected to be stoic, for God’s grace takes away the heart of stone.  When we endure trials, we feel the pain.  Do not ask to be made hard and callous, for this is not how grace works.  Grace gives us patience and submission, not stoicism.  We feel, and we benefit by the feeling.  There are some who will not cry when God chastens, and there are some who will not yield when God strikes.  Do not be like them! Be content to have Job’s suffering heart.  Feel the bitter spirit and the anguish of soul which racked that blessed patriarch.
My dear friend, when grief presses you to the dust, worship there! Remember David’s words, ‘Pour out your heart.’ But do not stop there; finish the quotation. ‘Pour out your heart before Him.’ Turn your heart upside down, empty it, and let every drop run out. ‘Pour out your heart before Him; God is a refuge for us’ (Psalm 62:8).
When you are bowed down beneath a heavy burden of sorrow, worship and adore God there.  In full surrender to His divine will, say with Job ‘Though he slay me, yet will I trust him’. This worship sweetens sorrow and takes away its sting.”

Ways To Be A Blessing To A Family With Special Needs

There are many articles out there addressing what not to say and what not to do when interacting with a family who is caring for someone with special needs.  And I’m sure I could add to those lists as well.  Who knows?  I may even write a list of my own, as we’ve had our own share of discouraging and anger-provoking encounters with people who thought they meant well.  But today, I feel compelled to jot down ways we’ve felt encouraged and supported by others as we trudge through the thick, muddy and often lonely waters of special needs.

So based on our own experiences during the short 4 years along our journey, here some ways you can be an encouragement to families like ours.  I’m going to try my best to avoid “do not’s”, and stick to “do’s”.

If you are a stranger:

1. Make eye-contact and smile

It’s always hurtful to receive stares, but almost as hurtful to be ignored.  It’s always encouraging when others see Marcus walking in his walker and smile.

2. Initiate

Say Hi! We passed by a new neighbor on the sidewalk recently and he asked if he could touch Marcus on the shoulder and talk with him.  It wasn’t creepy at all!  In fact, it warmed my heart.  One day at the pool, a mom and her son came over and they wanted to give Marcus a cookie and say hello.  That was so sweet and made me feel like we were welcome in our community.

3. Help

If you see a child acting out, screaming, awfully sick, or just having a bad day, his or her parents are probably not feeling too hot either.  I’m sure they would appreciate you opening a door, holding a bag of groceries, or picking up the apples that their son just angrily threw on the floor.

4. Ask politely

I don’t want to hide my child’s diagnosis from strangers, but it’s not always appropriate for me to divulge the information the moment we meet.  I don’t say, “Hi!  This is my daughter, Audrey.  She sweats like a wrestler and has a fear of wedgies and oatmeal.”  Nor do I say, “Hi!  This is my son, Derek.  He eats furniture and likes to grab himself.”  Likewise, it wouldn’t be appropriate to say, “Hi!  This is Marcus.  He has cerebellar vermis hypoplasia, retinitis pigmentosa, hypotonia, ocular motor apraxia, speech delay, sensory processing difficulty and an overall diagnosis of Joubert Syndrome.”

You probably should avoid, “Dude, what’s wrong with your son?”  But I appreciate when new acquaintances ask about Marcus because it shows an interest in him and in our family, and gives me the opportunity to share about how wonderful he is.

5. Answer your children’s questions with grace

When other kids see Marcus, they often look at him with a curious eye and ask their parents why he’s using his walker.  And that is totally natural.  In fact, if I was a kid, I’d want to know too.  Sometimes I hear parents shushing their kids or replying with “uh, uh, uh.”  But I have eavesdropped on some parents who have responded with grace, helping their children to see that Marcus is indeed special, but is just like any other kid who happens to need a little help getting from one place to the next.

If you are a family member or friend:

6. Listen

Sometimes parents of children with needs go through very trying times and they just need to talk out their feelings without feeling judged.  Give them a listening ear.  You’ll never be able to solve their problems, but just listening to their hearts will bring comfort.

7. Cry with them

Unless you are on your own special journey, you probably won’t ever be able to fully understand their heartache.  But seek to understand, try to put your heart where theirs is, and take on their burden as much as you can.  This will bless them.

8. Rejoice with them

Often, it’s the littlest things that bring great encouragement and hope.  Celebrate the smallest of milestones with them because it’s a big deal in their world.

9. Let them grieve for a long long time

Everyone responds to trials differently.  Don’t ever put a timeline on their mourning, or judge them for crying too much or not crying enough.  (Woops!  That was a “dont”!)  It’s hard enough dealing with their heartache, let alone feeling like they should be grieving the “right” way.  If you do have a concern, pray for them for a long long time and encourage them with humility and love.

10. Let them know you’re praying

I can’t tell you how many notes, emails, and letters we’ve gotten from people who’ve told us they’d been praying for Marcus and our family.  There have also been people who’ve come up to us just to let us know that they’ve been on their knees on our behalf.  This has been precious gold to us!

11.  Initiate practical ways to help (meals, giftcards, babysitting, etc.)

During dark times, it’s very difficult to ask for help.  Not necessarily because of pride, but because there is no energy to even wave a white flag.  Here are some ways our awesome family and friends have come to our aid even without us asking:

– Setting up meals for us on days we had big doctor appointments (especially when Marcus was first diagnosed)
– Calling to ask “Hey, can we babysit for you guys this Friday night?”
– Inviting our family over for a meal, or just dropping off a meal out of the blue
– Showering us with giftcards
– Secretly gathering money to send us to a conference to meet other Joubert Syndrome families!!  (crazy!!!)
– Housing us and feeding us to comfort us after hearing very difficult news
– Offering to take Audrey out and give her a good time, knowing that siblings can often feel neglected
– Sacrificially watching our kids for several days at a time, even during a season when Marcus was agitated, extremely fussy, and not sleeping well.
– Volunteering to be Marcus’ one-on-one aide to help him at church, sacrificing their own Sundays… and some of these volunteers have never even met him before!

12. Include them

I love that Marcus doesn’t even walk, but was asked by our church to participate in their sports league.  I love that Marcus doesn’t speak like other kids his age, but was asked to recite a verse at VBS. I love that he was able to be a ring bearer at our friend’s wedding, even if meant walking down the aisle in his gait trainer, with Daddy steering it for him from behind.

13.  Encourage your children to be friendly, but don’t (woops!) beat yourself up if they’re not

Your children will learn from your example in how to relate with kids who are different.  If you are warm, considerate, kind, and inclusive, they will learn from you.  But if your children happen to say something insensitive, unkind, or do something flat out mean, it doesn’t mean you’re a failure.  We all, including our children, have sinful hearts that are still in the process of being molded to our Lord’s.  Just talk with them, pray with them, and teach them that loving the Lord means loving the “least of these”.

Also, don’t (woops!) force your children to be friends with the children with needs.  Nobody wants a begrudging friend. On the flip side, everybody wants friends who genuinely want their friendship.  So encourage them to befriend the “different” kids, but also pray that the Lord will work in their hearts to do so with sincerity. And if that happens, this will be a HUGE blessing. Believe me on this one!

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Before having Marcus, I regret that I was entirely insensitive to people going through their journey of suffering.  I grew up saying cruel things about people who were different, being coldly insensitive to people who were undergoing trials, and selfishly withholding love from those who probably needed support.  Now I’m on the other side, and God has been so gracious.  He’s allowed us to be blessed by others when I’ve done nothing to deserve it.

This post is very much a way for me to thank all you who’ve come along side us.  Even the smallest gestures have been a means of grace and God has used you to surround us with His love.

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Simplicity In Suffering

This season of respite for our family has extended beyond my expectations.  I’ve been waiting for the proverbial other shoe to drop for a while now but it’s still hanging onto my toes for some reason.  Marcus has been doing really well and his contentment and progress in so many areas have been a huge encouragement to us.  Our family has reached a new normal in living with Marcus’ disabilities and although there is an eternal heaviness in our hearts, we’ve been able to breathe a lot easier.  I have a funny feeling that we’ll be looking back on these years as the golden era of parenting.  I’m supremely thankful for this time.

I can’t believe I’m saying this, but there really are sporadic moments (albeit very short ones) when I forget our dear son has a terrible syndrome.  But certain things will trigger the emotions of how we felt in the darker moments of this journey, when grief, sadness, and anxiety were close friends.  And there is a sliver of my heart that kind of misses those times.  I don’t miss the despair as much as how God used the despair to teach me and draw me close to Him.

There is a certain simplicity to suffering that I miss.  When I’m low and crushed, my life somehow gets reduced down to 3 simple things:

1. God loves me.
2. God loves my family.
3. God loves others.

Which then causes me to respond with 3 simple things:

1. I love God because He loved me first.
2. If God loves my family, I trust that He will take care of my family.
3. If God loves others, I want to pray for and care for others who are suffering.

But I realize that I often over-complicate my life needlessly.  I preoccupy myself with the unimportant and the transient things of life, being distracted by everything that life entails.   So in these seasons when I’m breathing a little easier, I want to cry out to my Lord,

Because your steadfast love is better than life, my lips will praise you.  So I will bless you as long as I live; in your name I will lift up my hands.  My soul will be satisfied as with fat and rich food, and my mouth will praise you with joyful lips, when I remember you upon my bed, and meditate on you in the watches of the night; for you have been my help, and in the shadow of your wings I will sing for joy.

Psalm 63:3-7

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Preschool Rockstar

Since Marcus’ school  is on a year-round schedule, he’s already finished a month of school and so far, so great.  He’s rockin’ the new class, with the new teachers, new therapists, and new friends.  Here are the highlights so far:

*  Taking 20 independent steps in PT (crazy!).
*  Jibber-jabbering the whole way home, telling me about his day.
*  Having a half-dozen teachers, aides, administrators, therapists come up to me to tell me that he’s determined, hard-working, adorable, smart, bright, a joy to be with, cuddly, and just plain something-else.  One even told me he’s made everyone fall in love with him.  I don’t doubt it a bit.
*  Telling me what he got for his reward everyday before I can even say, “Hi”.  The dude is so proud of himself whenever I pick him up from school, you’d think he got elected class president everyday!

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*  Drawing this in OT

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And my favorite highlight…

*  Making real friends.

I asked him who his favorite friends at school were during his bath last night and he said, Ben.  I thought he might have just said the first name he could think of, but it turns out they are really forming a bond.  Today was Ben’s birthday and during his little party, he demanded that Marcus sit with him.  So they honored the birthday boy’s wish and pulled Marcus out of his PT session so that he could celebrate with his bud.  After school, I spoke with Ben’s mom and it turns out that Ben is talking about Marcus at home too and really likes him.  And while walking to our cars, Ben even asked her if he and Marcus could walk up the grassy hill to play together.  (Heart-melt!)  I wish I could have caught a picture of the fist bump they gave each other today!

Okay, so I cried on the way home.  This might be such a normal thing for other moms to experience, but it’s no small thing for me.  I always wondered if Marcus would be able to make friends, if other boys would have a genuine liking to him.  It turns out there’s at least one boy that does!  Oh, how I love normal!  I thanked God on our short ride home for this unique and special blessing.  Another whisper from Him to tell us, “See?  I’m taking care of you!”

So yes, Marcus is rockin’ preschool.  He’s the Bono of preschool.  Rock on!

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On A Sensory High

Sensory integration.  I had never heard of it until Marcus’ Joubert Syndrome diagnosis.  When I saw it mentioned on a list of problems I was told he would face, I didn’t think too much of it.  I thought it would be the least of our worries compared to probable vision loss, kidney failure, and potentially not walking or talking.  Little did I know that sensory processing difficulties are one of the most debilitating, heartbreaking, and frustrating handicaps that so many with JS face.

For those of you who are unaware of what it is, let me try to explain with my limited knowledge.  Sensory integration is basically the ability to process all that a person experiences through his or her senses and make sense of it, allowing him or her to function in daily life.  Some people have likened it to an airstrip, where hundreds of planes can take off and land in one day.  When sensory processing is in sync, all the planes can come in and leave smoothly, on time, and efficiently.  When sensory processing is off, it results in utter chaos and is potentially cataclysmic.

Those with sensory processing difficulties, such as people with autism, can have seemingly unreasonable fears to certain senses.  Certain sounds, textures, touches, smells, sensations, can cause them to act out in unfavorable ways, but are usually mechanisms for them to cope with experiences that to them, are chaotic and even frightening.  Sometimes, these people can have a “system overload” without even realizing it until it’s too late and then one little thing can set them off into a breakdown that can send them spiraling.

Until Marcus was about 3 years old, he had perpetual open scabs on his knuckles and behind his ears.  He slept on blood-stained sheets because he would rock on all-fours, rubbing his hands and ears on his bed, banging his head on the wall or on his crib.  It was his way of coping with his sensory issues.  On top of that, his JS made it very difficult for him to regulate his sleep, so we would be up several times at night, trying to keep him from injuring himself while he fought to get any sort of restful sleep.  During the day, we had to constantly make sure he had the right distractions so that he wouldn’t thrash himself in his carseat or stroller.  Needless to say, car rides and going out were very tiring and caused much anxiety.  Things were difficult at home as well, as he would scream or rock violently if left alone for too long.  I was his security blanket, as he needed me to be with him for every single thing.  And with little sleep at night and seeing Marcus suffer so helplessly, it was an incredibly trying time.

One of the most frustrating and humbling parts of sensory processing difficulty is that there’s no one sure answer to help our children.  There are different techniques such as brushing, swinging, deep joint pressure that are helpful for some.  For others, medication can help.  Some others have sought out alternative therapies or dietary supplements.  But all in all, there is no magical cure and many suffer through it continuously.  My heart is especially burdened for other JS parents whose children injure themselves or even others and are unable to adequately communicate their pains and frustrations.  I’ve had a tiny taste of it and it is in one of the most heart-wrenching parts of the Joubert Syndrome monster.  It makes daily life almost unbearable.  For many families, this is a daily reality and I ACHE for them.

For some reason, Marcus has tremendously improved in this area.  He is relaxed during car or stroller rides and he usually sleeps 11-12 hours at night.  He still does his self-stimulative rocking from time to time, but we know why he is doing it for the most part and can get him to stop once we address the issue.  His knuckles and ears are no longer opened up and he is an incredibly content little boy.  He still has several fears that normal boys his age don’t really struggle with,  but he has been able to communicate those to us and we know what things we need to avoid with him.  However, we know this can all change tomorrow and we are already in prayer for the puberty years, since there are so many kids with JS who have horrible issues with sensory-related behavior problems during that time.

ALL THAT TO SAY…we are at a peaceful time with Marcus right now.

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I don’t know why or how we got here, but we are here and it can all change tomorrow, so I am soaking it up with the utmost gratefulness.  The fact that we can spend an entire day outside having fun as a family without anyone having anxiety over Marcus being okay, and then come home to a restful night’s sleep is NO SMALL MIRACLE.

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Sure, he’s not walking independently yet and it’s not easy getting him from Point A to Point B, but we all eventually arrive at Point B and Marcus is just fine.

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My mother-in-law asked me to today how I don’t get tired carting the kids from one activity to another.  I told her I do, but when I see them enjoy themselves and I capture their smiles, it’s all worth it to me.  Who knows how long this season will last?

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I do not and cannot take it for granted.

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Instagram collage inspired by Kelle Hampton of Enjoying the Small Things.

In His Own Words

Last week at VBS, Marcus had the privilege of sharing an abridged version of a Bible verse in front of everyone.  His was Luke 9:25 “God is better.”  Short and simple, and pretty much what we’ve been trying to share with him…that Jesus is better.

(If you’re interested, you can watch Marcus’ class presentation here and Audrey’s here.)

Today, I had to correct him for some bad-boy behavior and as I was praying with him, I couldn’t help but literally cry out to the Lord.  I clenched him tight, let my tears land on his shirt, and just begged the Lord to pour out His grace on my son.  It is the Lord who saves, not Marcus’ capacity to understand the Gospel, so I pleaded with Him to give him a saving faith in the incredible love shown through Jesus.  I felt like a baby, just begging.

Later in the evening, I put on my Wicked Stepmother outfit and yelled impatiently at the kids in the car, being especially ugly to Audrey.   I could see the poor girl whimper in the rear view mirror and I realized how harshly I’d treated her.  Normally, I would let her sulk for a while  so she would feel guilty for turning me into Meanie Mama.  (Because it’s all her fault, right?) But after a few minutes, by God’s grace, I asked her to forgive me. It went something like this:

Me: Audrey, I’m so sorry.  Please forgive me.  Mommy was so ugly, huh.  Mommy was so angry and impatient and I shouldn’t have yelled at you.  Mommy’s heart was so full of sin, wasn’t it?
Auj: (whimpering)
Me:  Why are you crying?
Auj:  Because I thought you didn’t love me anymore.  (ouch!)
Me:  (heart pretty much crumbled) Audrey, I’m so sorry. I love you SO much.  But because Mommy’s heart is sinful, my love for you is not perfect, even though I wish it could be.  Remember how we learned that God loves you no matter what you do or don’t do because of Jesus? Only God’s love for you is per…

And that’s when Marcus chimed in.
Marcus:  Jesus is better.  God is better.

It was the first time he had said those words without us prompting him to.  I’m not sure if he really understood the meaning of it in his heart, but it sure spoke to mine.  God’s’ love for my kids is better than my love for them could ever be.  I ache for my kids to know this.  Especially when they experience heartbreak and pain of their own, I want them to know that nothing can ever separate them from God’s love; a love that was proven when He hammered nails in the hands of His perfect and beloved Son so that He could carry the burden of their fallenness.  A love that calls them His own children and doesn’t change because HE doesn’t change.  A love that welcomes them with open arms no matter how much they don’t love Him back.

I’m seeing more and more how I need to cry out at the feet of Jesus for my kids (for our whole family, actually).  Even if Marcus couldn’t speak a word or if he never showed signs of “understanding”, I want to grow in faith that it is HE who saves and His grace is wide enough to cover over our little ones.

Ugly Morning Lessons

Today was one of those mornings.  Every mother has them.  I had a feeling when I woke up groggy, and Marcus angrily threw his Cheerios during breakfast, that it was going to be sticky day, and I was right.   Here is a snapshot of my morning:

– Long, frustrating call with Verizon
– While breaking up multiple fights between the older kids
– Resulting in Marcus screaming so Russia could hear him
– Then sequestering him in the bathroom for the umpteenth time while asking the Verizon lady, “Sorry, could you repeat that?”
– Teething baby waking up
– Baby crying bloody murder because brother pushed him
– Dreading getting ready for Auj’s swim lesson because I really didn’t feel like hauling the swim gear and redirecting Marcus in his walker out of the rose bushes every few steps along the 45 mile trek to the car while pushing Baby in the stroller, which is especially embarrassing saying “Hello” to my neighbors because they’ve just heard me yell at my kids all morning
– I knew it got bad when Audrey saw me in a not-so-good state and offered to do all my chores for me, then I saw her crying on the couch because I didn’t say “good job” to her

(By the way, why is it that when things like this happen, all of a sudden I get really upset that my house is so messy and that I didn’t get a chance to exercise?   Because I was perfectly okay with the dust level of my house last night, and I haven’t exercised in 5 years!)

In any case, I found the ugliness of my heart spewing out all morning, complaining about this and that and declaring “only if” this or that.  I wanted to take myself into my office (if I had one) and tell myself, “Didn’t you know this was a part of your job?  Didn’t you want so desperately to be a mother?  Well, these kinds of mornings come with your job description, lady, so stop complaining and just do your job.”  Then I realized how utterly normal my morning was and how I’ve longed for normal when I was afraid it wouldn’t be.

Lately, there’s been a new dimension to my trouble with Marcus’ disabilities.  When usually it’s sadness or grief in regards to Marcus’ happiness and well-being, lately it’s also been a “woe is me” mentality and “wouldn’t my life be so much easier if…” thoughts, as if all this revolved around ME!  I remember earnestly praying after Marcus’ diagnosis, “Be gentle with us, Lord.  Please be gentle with us!”  Sure enough, He heard those pleas and answered those exact prayers.  Marcus’ symptoms fall under the milder hemisphere of Joubert Syndrome, and yet I still complain so much.

Then I think about all those parents who are suffering so much with hospitalizations, seizures, severe sensory processing issues, organ failure, undiagnosed GI issues, and I am so humbled.  So rebuked.  Through this, the Lord has gradually softened my selfish and thankless heart and started to peel my eyes off myself.  I’m compelled to pray for Kara in the UK who has life-threatening apnea, Elijah in Minnesota who is about to undergo a bone marrow transplant, Jada who is being treated for cancer, our friend Corben who is awaiting a kidney transplant, and a few mothers I’ve come to know who’d give anything to see their child again, even if it meant having a rough morning.  Most of these souls are friends whom we’ve never met, but whose stories I’ve followed and have become so dear to my heart.

Yes, I had a not-so-smooth morning, but the Lord has graciously allowed me to see it in perspective.  He cares about my anxious heart and all the reasons why I complained, but He also has His hand in so many others’ lives, who bear a weight so much heavier than mine.

By the way, the crying children of the morning turned into smiling children in the afternoon.  The day didn’t turn out so bad after all.