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.”
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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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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.

Remembering The Day We Won The Lottery

To say that Marcus is a gift from God to our family is the world’s greatest understatement.  I like to imagine how my Lord beautifully knit together my son with the greatest of detail and packaged him with the utmost care.  Four years ago today, when He delivered this present to us, we didn’t know that this gift had so many compartments to it that we would keep opening up for the rest of our lives.  And the blessings continue to arrive each day.

I wanted to post some pictures of our Champ when he was itty bitty.  But somehow I can’t stop crying as I want to touch each photo, kiss it, and just remember.  Floods of emotions and memories I forgot were tucked away in my Mommy heart and now they’re flowing out of me uncontrollably.

I remember when we knew that something was “wrong” after a few weeks.  I remember I shot this video with tears in my eyes while trying to maintain a light spirit in front of Audrey.

I remember staining the Psalms with my wet prayers and begging the Lord to be gentle with our son and with our family.  The months and years passed and He answered lavishly.

How did WE get to be chosen to be Marcus’ parents?  We have done nothing to deserve him!  How did the Lord consider US in such a loving way, that he would give us this most precious gift?  On the day he was diagnosed, I thought Mike and I died.  But OH, how he’s brought us back to life again!

We are blessed beyond measure.  Happy birthday, my love.

Mom

This post is a week late, but I’ve been wanting to write about my mom.  I love her.  I miss her.

I think about my worst fear as a mom, and that’s  seeing my children suffer.  Then I think about my mom and she is living out this fear.  Not only does her heart break for her grandson, but she’s watching her own daughter suffer as I go through the valleys of special needs.

But she’s my rock.  Ever since Marcus was diagnosed, she has never shown me any doubt in God’s goodness, any anxiety about Marcus’ health, or any worry about my well-being.  Although she may worry or be sad, she lays her tears at the feet of Jesus and shows me only the peace she receives from Him.  Whenever I am sapped of strength or hope, I am held up by the fact that she showers my life with her early morning prayers.  She prays for me even when I’m too weak to pray for myself.  She trusts unwaveringly in our loving Father and reminds me of how trustworthy He is.  What a gift she is to me and my family!

For Mother’s Day, I didn’t get to see my mom, but I spent the day as Mom to my kids and celebrated with them.  What my mom is to me, I want to be for them.

From my mom, I’ve learned that God is generous, kind, merciful, and in control.  I’ve learned that trials and conflicts and pain are God’s gifts to bring us closer to Him.

She never sat me down to teach me these things, she just showed them to me through her life.  I pray my children will one day see the same in mine.