Alive and Kicking

I realize I did some spiritual coasting this summer.  Riding the waves of good sermons and enjoying the calm waters of uneventful days, I think I let my heart settle into the California mindset of hanging loose and enjoying the good weather in this season of life.

But at the tail end of summer, right before the kids started school, a swell came in from the horizon.  I saw Marcus crawling around one day, bumping his head on different things.  It wasn't anything new, but this time, he was obviously distraught, burying his head in his arms and crying out, "Mommy, It's so hard.  I don't know how to see." 

I couldn't sleep that night.  We are on high alert whenever Marcus indicates anything regarding his vision, so I cried and prayed all night, begging God to guard what little vision Marcus has, even though the doctors say his retinal degeneration is inevitable.  I feared it was the beginning of my son losing his eyesight, adding another layer of pain to the challenges he already faces.

As He usually does in times of despair, the Lord led me to Psalm 34, drawing my attention specifically to verses 19-20.

Many are the afflictions of the righteous; but the Lord delivers him out of them all.
He keeps all his bones; not one of them is broken.

When I read this passage years ago when Marcus was first diagnosed, I didn't have faith that God would follow through with this promise...to deliver us from our afflictions.  I thought the only way God would do that was by healing Marcus from his condition.  But this time, I read it with a clearer understanding.  God doesn't promise to take away our afflictions, but He promises to deliver us from them by protecting us in the midst of them.  When I read it this time, I felt my eyes were opened to the truth that the way God shows us His love isn't necessarily by taking AWAY our pain, but by loving us IN our pain.  Not one of my bones will be broken in hardship, He says. 

By God's grace, I noticed my heart had grown a little from a few years back.  I woke up from that restless night's sleep with thanksgiving, that God would give me a spiritual love-pinch, a poke in my rib to make sure I was alive and not just a dead weight coasting along.  After probing Marcus more about it the next morning, he clarified that his vision wasn't changing, but sometimes it bothered him more than usual and that sometimes it was "hard to see".  I asked him if he was sad or okay and he assured me that he was alright.  (By the way, we are SO thankful that Marcus can even verbally communicate all this.  It is a huge deal and we in no way take this for granted.)  So yes, I was thankful that God would use this vision episode not as a code red for Marcus, but as a spiritual defibrillator for me, giving me a good hearty slap in the toosh to make sure I wasn't sleeping my way through the path of following Christ.

Since then, He's allowed for more opportunities for our faith to be stretched.  For example, Marcus took a fall at school recently, cried on a different day because he was scared, and today he told his aide at school that he never ever wants to go back to kindergarten again.  But through the various hurdles, He's also given us some precious truths to hold onto.

Matthew 5:3

Blessed are the poor in spirit, for theirs is the kingdom of heaven.

1 Peter 1:6-7

In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ

I could go into a long boring commentary on how these passages have taken a hold of me, but in summary:  I love how different afflictions big and small can bring my heart to life by drawing from the Words of Life.  They remind me that though it can be comfortable to just happily float along day by day, there is far more joy in desperately clinging onto Him who helps me persevere toward a great and glorious Day.

I've said it many times before, but goodness, do I thank God for our dear Marcus.  How I greatly rejoice.  My heart is alive and well.

Thoughts On The First Day

I dreaded the first day of school.  With the slower stride of summer and getting to enjoy being with the monkeys doing everything and nothing together, I didn't feel like stepping into the hustling bustling pace of the fall.  Waking up early, packing lunches and backpacks, nagging them to get out of bed or finish homework...I just wasn't looking forward to it.



But what bummed me out the most was the simple fact that these babies of mine were growing up...again. Marcus is now a Kindergartner without the comfort of a small special needs class setting.   Instead, he's in a large general ed class full of "typical" peers. And Audrey, who doesn't seem to ever stop growing, is at a different school than last year and has to make a whole new set of friends.



It didn't help that after our bedtime prayers the night before, she erupted in tears accompanied by a few rounds of "I'm scared." And it was then that I heavily doubted the "I love you" I wrote on blue ink on the kids' left hands were going to bring them any comfort.



The Lord knew what this mama heart needed because I had set a date to visit with my friend Stacey after the first morning's drop-off. The kids parted ways wonderfully, but my eyes were sore from damming up the tears all morning.



So it was a wonderful blessing to share our mama burdens to each other and pray for our children while letting the tears flow freely. What I realized during my time with her was that it's not just the thought of seeing our kids go to school and have to go through good and bad experiences on their own that saddens me, but also the fact that these babies are growing up quickly and the sand in the hourglass is falling faster than I had expected. And boy, does a mama feel vulnerable knowing that our babies are out there in world on their own, even if it's only for a few hours a day.



Thankfully, praying with my friend and entrusting our Father with our kids that morning calmed my heart tremendously and reminded me that He sure does love them more than I ever could.  And because He loves me too, I can go to Him to tend to my heart when it's bruised by the sometimes light but sometimes brutal lessons of motherhood.



Upon picking them up, I knew that I'd be able to tell from their first facial expressions, what their first day was like. So since I saw this:



And this:



I let out a sigh of relief and thanked Him for being gentle with us all on our first day.  Not all of them will be as smooth and happy for sure, but at least we got off to a great start (unlike Audrey's first ever school experience).



That day happened to be my birthday, so it led to a little more introspection than usual. I thought about how blessed I am at this stage of my life.



Not only has He met my every need, but He is using the precious members of my family to reveal in me a greater need I have of Him.



My husband and my munchkins are gracious gifts I don't deserve.



They make me laugh, they make me cry, they energize me and they expend all my energy at the same time.



But what I'm most thankful for is that God uses them to make me long for Him and depend on Him more because they expose all my weaknesses and all my flaws.  They don't know it, but they're teaching me so much. And as I'm now getting ready for a new week of school ahead, this mama's heart is nice and full.

A Unique Privilege

"I would do it again in a heartbeat."

It's what people say after a great vacation or an awesome dinner.  However, you don't typically hear it after someone's trekked across the country to see his child be poked and prodded by doctors for four days straight.  But it's what my husband said towards the end of his trip with Marcus to NIH (National Institute of Health in Maryland) and it's what we've heard so many parents say of the same experience.

(all photos taken by Mike on his phone)





Last week, Marcus participated in a medical study for Joubert Syndrome and other similar syndromes associated with kidney and liver diseases.   It had been going on for a few years and we were fortunate enough to take a spot during the very last week of the study.  We had many fears while preparing him for the trip.  Will Marcus be okay on the plane or will his sensory issues keep him miserable the whole ride there?  Will he be anxious and fearful at each appointment? (He had several a day.)  Will MIke be okay going to all the appointments on his own?  Will we hear discouraging news after all the testing?

We asked some friends to pray for us and the Lord bountifully answered.  He did so well during his travels and even said that he wanted to ride a plane again, despite the loud noises. 





He was also brave beyond his years at each appointment and our boy, who freaks out at band-aids, became Super Marcus when he didn't flinch while probes were wrapped around his head during the EEG.



There were some difficult times though. Three people had to pin him down to collect 12 vials of blood, and dilating his eyes was also very scary for him and very stretching for Mike.



But by God's providence, our church had the kids memorizing Proverbs 18:10 a few weeks prior to the trip. "The name of the Lord is a strong tower. The righteous man runs into it and his safe." We had been talking quite a bit about the fact that God is a refuge for us; a safe place. And as he recited it with Daddy during the difficult times, I think it was an encouragement to them both, and to us at home, who were praying for them and dying to be with them.

At the end of the week, the head doctor of the study showed Mike and Marcus the results of each test and we were so thankful to hear that besides his retinal degeneration (which we had already known about), his health was stellar. She even said that although there still is a chance he could develop kidney or liver issues down the road, based on his current tests results, it is less likely that would be in his future. We were beyond thankful to hear that news, knowing how much they had to go through the entire week.

After Mike came home, I asked him why, even through the tiring travels and the arduous appointments, he would relive the experience again. Of course, he mentioned that the good results was a major factor, but he also added a few other reasons:

1. Meeting the people.

Not only the amazing doctors and staff who genuinely cared about the children and who actually knew what Joubert Syndrome was (versus the local doctors who often Google JS to find out information about it), but also meeting the other two kids and their families who were there for the study at the same time.





Mike repeatedly said that the trip was so worth meeting Mackenzie, Andrew, and their amazing parents. I'm sure they now all share a very special bond and we hope to, one day, meet again.  (Please read about Mackenzie and her family's experience on her blog!  Hope you don't mind me sharing it, Whitney!)

2. Seeing the world of rare disease beyond Joubert Syndrome.

At the hospital and at the Children's Inn, where they stayed, Mike met and saw many other children with rare conditions. Some with physical deformities never seen before and some who were obviously very ill. In his words (which I'm paraphrasing), "I saw all those children and I loved them all. I would want to adopt them if they didn't have parents of their own. The world would see them and see something wrong, but they are all perfect. And yet, in all these rare diseases, I saw a visual picture of the effects of the fall on this world."

We believe that Marcus is fearfully and wonderfully made. However, there is also the reality that God will one day renew our bodies to be whole again.  And to see so many others struggle with so many other challenges unknown to us, opened our eyes to the fact that much suffering exists.  Not all patients go home with good news like us.  So even though we are daily faced with Joubert Syndrome in our home, there exists a world at large that is longing to be healed of sickness, relieved from pain, delivered from sadness.

But interestingly enough, sadness isn't really what Mike saw there.  He said that so many of the children and their parents were smiling and happy in spite of the reasons why they were there.  And so it dawned on us that being a tiny part of this world of disease and disability is a unique privilege we never thought to ask for.  At least, that's our perspective for now.  It's heart-breaking and exponentially more for those who carry severe pain and even loss of their loved ones.  But for us, for now, we consider it an honor to share a small part of this unique experience.with others.

To learn to recognize the gift that is our health, to entrust our Heavenly Father with our most beloved children, to be stretched and reminded that God's grace extends past our weaknesses, and to long for Heaven...that is the privilege for us.  We are so blessed to have Marcus, who has introduced us to a whole world we would never have known otherwise.

We Will Always Be With The Lord

It's been a tough week of parenting. I had one of those evenings this week where I was crying while making dinner just because I felt so stretched the entire day, and the only comforting thing to do was drop tears on boiled noodles. My rockstar husband noticed my seams were coming undone so he told me to drop the cooking, leave the house, and go have dinner by myself. I thank God for Mike, who often prescribes me exactly what I need.

While driving out, I wondered why it's been so hard for me. I have a loving husband who comes home by 4:30 on workdays and helps out amazingly with the kids. I have three precious, beautiful children, and by golly, I now have a garage and a backyard! How much easier could life with three children be? Besides that, I know several other moms with multiple kids with disabilities who are medically fragile, in and out of the hospital, or severely affected, and maybe even with no typical children. There are also mothers who would do anything to have a crazy day with a child they've lost or with a child who was never born at all. Thinking about this, I wanted to punch myself in the gut.

The truth is, in spite of all the blessings, and although I really do have it good, it's still a difficult season for me. I could try to list it all out, but basically, one of the main reasons why I feel so stretched is because Marcus is incredibly dependent on me for virtually every need. And because of that, he has much anxiety when I'm not close by. So, getting food prepared, taking care of bills, or even going to the bathroom can be very tricky and anxiety-inducing for me, because I know that Marcus could end up being upset somehow. Throw in a side of Derek's tantrums or a brotherly brawl, and it's another beautiful mess.

But what puts me over the top is that I know Marcus doesn't want to need me as much as he does. "It's so hard for me," he said randomly on the way home from Audrey's soccer practice. "It's so hard for me to play soccer and walk on the thick grass."

We had been watching the girls run on the field and Marcus wanted to run with them so badly, but his walker was hard to maneuver on the grass and each step was accompanied by a loud sigh because it was so belabored. Yet he saw Derek walk around just fine and realized, "Derek's walking regular." And this was just an hour after the kids were chasing each other around the house and Marcus, having to crawl to catch up with them, decided to give up and with a frustrated tone, said, "They're going too fast. (sigh) I want to just lay down and rest."

As hard as it is for me to care for the kids with Marcus' needs, it's exponentially harder for Marcus himself. And that's what daily tears at my heart.

I thought about all this as I drove out of the house and once I got to the restaurant, the host seated me at my table for one and I opened my Bible to this:

For the Lord himself will descend from heaven with a cry of command, with the voice of an archangel, and with the sound of the trumpet of God. And the dead in Christ will rise first. Then we who are alive, who are left, will be caught up together with them in the clouds to meet the Lord in the air, and so we will always be with the Lord. Therefore encourage one another with these words.

1 Thessalonians 4:16-18

Immediate comfort, renewed hope and excitement for my future reality...that's what the Lord pumped into my spiritual IV through this passage. "We will always be with the Lord." Not that He isn't with us now, but the thought of physically being with Him, being gathered up to be with Him forever, that is a picture I don't want to let go of.

I came home so rejuvenated, smiling as I gave Mike a hug and thanking him for my night alone. I also was excited to tell the kids about this in the morning and to tell Marcus about how things won't be so hard for him later when he's with the Lord. The kids were pretty stoked that we would be taken up to the clouds to be with God, who was preparing a room for us. Marcus obviously loved that the trumpet of God would announce His arrival and I think he was intrigued that he would one day be able to run and jump with ease.

"But Mommy," he said with a pause. "Will you be there with me?"

"I will," I answered. And I just left it at that. Because if heaven for Marcus means that I will be there to help him and care for him so that none of his needs or desires will be unmet, then he has no idea how incredible it will really be. And I can't wait to see the look on his face when he realizes that heaven will be so much more than me being there.

His Creator, the One who knows what every cell is or isn't doing in his body, the One who holds the universe in His hand, the One who ransomed his life with the sacrifice of His perfect Son, He will be there to take care of him...forever.

What My Son's Birthday Means To Me

We celebrate birthdays to rejoice over a person's life...how they've grown, what they've accomplished and contributed over the years, and how God has met them. We add another number to their age and wish for prosperity and blessing until another year passes, anticipating what the future holds.



Marcus turned 5 this past weekend and we did just that.  But as much as we celebrated what God has done in his life, I can't help but also reflect on what He's done in mine. Were it not for this birthday, I wouldn't be the same person. I would be a completely different wife, mom, sister, daughter, friend.





It's hard to pinpoint exactly how Marcus' life has changed me. Of course, he's opened our hearts to the painful yet beautiful world of special needs and indeed, he's made us more broken and he's tilled the soil of our hearts so that different lessons could be sowed. But at the most granular level, Marcus has changed me by allowing me to feel like never before.



It's like my life was viewed in black and white when in reality, everything was in color. And then when Marcus came along, we were able to see the vibrancy of every hue in the spectrum. The darks were darker than ever, but the lights were striking, just breathtaking.





I think that's how Marcus has changed me the most. My senses are heightened like never before.





Living life day by day, I often catch myself saying, "This is no small thing." Throwing a birthday party, eating food, sleeping through the night, having a place to call home, talking on the couch with my husband, laughing, feeling grass under my feet, seeing smiles on my children's faces, having children at all...no small thing.





And as much as I've been able to appreciate this life, Marcus has also awakened my yearning for the life that is to come.



Heaven didn't appeal to me so much when I was younger. Probably because I sought my heaven here. My heaven was going to be my husband and children and the family we'd build together.





But as Marcus has helped us see this world in vivid color, he's also unveiled the reality that at best, this world is fallen, broken, imperfect, brutal, utterly incomplete and desperate to be restored.  We fall short, we hurt, we fail.



We rejoice that Marcus turning 5 is no small thing.  I see him happy and smiling despite the challenges and I'm utterly grateful. I don't deserve him and all the ways God has blessed us through him.



At the same time, I can't wait until we will truly rejoice and celebrate like never before. There will be a joy never experienced here and a beauty never beheld here, because my Savior will be there. The One who experienced all of life's hurts, the One who owned up to all my failures, and the One who continues to intercede for me today...He will be there.



Now that's going to be one celebration.

She Loves Fiercely

Audrey, Marcus and I visited their soon-to-be new school during their Open House. It was the first time we really toured the campus together and saw what would be their new school community this Fall. As we peaked through the last few classrooms and walked across the playground, Audrey very gently walked toward me as if she needed a hug.

Me: What's wrong, babe?
Auj: (talking somberly) They're looking at Marcus, Mom. Everyone keeps looking at Marcus.

My heart sank. I thought I was the only one having to smile through the stares.

Me: Oh, Auj. They're not staring at him because they're being mean. They're looking at him like that because they've never seen Marcus before. And once you both start coming to the school and they get to know Marcus and how he walks in his walker, they won't stare anymore. Don't worry. They're just curious.
Auj: (silent)
Me: What's wrong?
Auj: I'm sad. They're looking at Marcus because he can't walk.

I loaded the kids in the car, giving Audrey an extra long hug while assuring her the best I could that all would be okay. And on the way home, I heard from the back seats, the sweetest sweet-talk a girl could give her brother. "Marcus, look at those projects all the kids are holding! Mom, when I go to this school and if I make a solar system project, I want to give it to Marcus." And for minutes after, just one sweet word after another.



I always knew Audrey loved her brothers, but now I know that this love she has for Marcus is something fierce. And since that night, my heart has been heavy for my daughter, who is experiencing something I will never know for myself...loving a sibling with special needs.

My immediate reaction is to take away her sadness, as if I could somehow fix the situation so that she wouldn't have to hurt. But how selfish that would be of me, to alleviate the pain so that I, too, wouldn't hurt as both Marcus and Audrey (and Derek too later on) carry their own unique set of struggles. Because I know that although the lows hurt deeply, they allow for joys that can only be experienced after being pricked and stung.  And so, as much as I have to give Marcus over to the Lord, so must I trust Him to take care of my daughter, whose pain only He will fully understand.

My sister gave me a pep talk after this night and she reminded me that this is a privilege for Audrey and that God would teach her things and open her eyes to a world that otherwise would never be known to her. And that is my prayer for my daughter...that this burden she bears would be a gift to her, that He would soften her heart to others who hurt, and that she would know more intimately her suffering Savior through being Marcus' sister.



I remember when she was only two, asking several times a day, "You crying again, Mommy?", the pain of Marcus' diagnosis still fresh on my heart although I had tried my best to keep happy for Audrey.  I don't remember how I responded to her, but I didn't think that the time would come so quickly, when she would understand the reason for my tears. And so it begins...

Vulnerable

What is it about this boy that makes me know no higher joy, and yet leaves me so vulnerable?



While we rejoice at where he is today, and where God has brought our family, at times I still feel like my heart is an open wound, bare and unsheltered, lying in the middle of a war zone, where at any moment, grenades and spears and bullets can attack with no mercy.  Growing older and more aware of the ills of living in this fallen world, I see my children and Marcus in particular, and want to pack up our stuff to live in a cave, pretending that the world won't be able to touch us.

I hate that I'll read an article about how teenagers with disabilities have no real friends, see a Facebook status about how someone's autistic son now struggles with debilitating seizures, or I'll hear about older children with JS struggling so profoundly with emotional and behavioral challenges, or parents grieving the incredible loss of their child, and then look at Marcus and want to roll up in a ball and cry, fearing that those will be realities for him some day.  I know it's wrong to assume he'll face these things, but more likely than not, there will be extreme valleys ahead for us in one form or another.

When I'm left alone to the statistics, I go a little nuts.  But thanks be to the Holy Spirit to remind me of my Savior.

He was despised and rejected by men;
A man of sorrows, and acquainted with grief;
And as one from whom men hide their faces
He was despised, and we esteemed him not.

Surely he has borne our griefs
And carried our sorrows;
Yet we esteemed him stricken,
Smitten by God, and afflicted.

Isaiah 53:3-4

I love that Jesus was a man of sorrows. Perfect in every way, but not haughty, because He was despised and broken. He carried the vileness of this world on Himself and we, for whom He suffered, hated Him. When God crushed Him on the cross on my behalf, He carried in his heart all the issues I fear in life. He understood loneliness, being an outcast, debilitating physical pain, emotional turmoil, death.

I love that when God says in His Word that all the pain in this life is "light" and "momentary" (2 Cor 4:17), He's not saying that with the air of "Okay, so just suck it up, folks." He's telling us that because although in light of eternity, the pain is short, He also understands that our affliction is deeply painful at times.

I'm gonna go out on a limb here, but I don't know if I could love Jesus if He never knew pain.  It would be extremely difficult to put my trust and hope in a Savior who did not understand my heart.  But thankfully, my Lord not only understands, but has experienced it Himself.  He died with all the world's pain on His shoulders and suffered the full wrath of God so that I wouldn't have to.  And for that, I love Him.  I love my Savior who walks me through this momentary life and guides me across the minefields ahead, having already experienced the worst of it Himself.

I love that He gave me and Mike a son who is a living reminder of all that He is for us.

Widened Prayers

Thinking of Marcus' future is like looking into a telescope to find that what you've been wanting to admire from far away has been blocked by thick clouds.  Mike and I always wonder...will he be living with us the rest of his life?  Will he have a job?  Will we outlive him?  Question mark after fuzzy question mark.

A few weeks ago, on our drive to church one Sunday, we discussed perhaps praying for his future wife.  Having heard of a couple who was praying for the future spouse of their daughter who has Spina Bifida, I was challenged to do the same for Marcus.  I brought up the subject to Mike and we decided that yes, we ought to pray for Marcus' future in a way that doesn't leave out anything the Lord could do in his life.  The arm of the Lord is never too short, so we want to pray for anything and everything within His reach.

I mean, seriously though.  How can one NOT fall in love with this guy?  I have to keep this boy from charming every lady he meets, for goodness sake!



Providentially, Desiring God ministries came out with this video recently.  I watched it with Audrey on my lap yesterday and I couldn't stop crying.



Could my prayers for Marcus encompass this kind of love?  A love that so beautifully portrays God's love for us through His Son?  In her blog, Larissa writes,

...the weight of what has happened today through this video and what will continue to happen pummels me. it pummels me because what god is accomplishing through our afflictions is happening at the same time that we are sinning. What a great divide that crosses. What wretched sinners Ian and I are, and yet somehow, He uses us to magnify himself. Our sin does not prevent god's glory on display.

Of Ian's role as a husband to Larissa, their brother writes,

As a husband, I want to be strong for my wife....But how can Ian, a crippled man who’s been stripped of many physical and mental capabilities, be this type of man for his wife?

...the best way a husband can serve his wife is by caring for her spiritual condition and seeking her sanctification. This is the most obvious way Ian serves Larissa, and he does it well.

Ian’s joyfulness and complete reliance on God seem to bring encouragement to Larissa, not to mention his quickness to bring God back to the center of things. Ian portrays faith like it should be portrayed: as common sense. God is good and that’s the truth, even to a man in Ian’s condition.

My prayers for Marcus have widened.  Yes, I will continue to pray for a potential wife for him but now, I'm challenged to pray that our son, who cannot walk on his own, who has to put forth so much effort to finish a sentence, who feels and processes this world differently, who will lose his vision one day, will have Ian's faith and influence on others.

As a baby, soon after Marcus' diagnosis, I prayed with him every night, baptizing him with my tears, that God would make our son a leader.  That Marcus would be so convinced of God's love and grace, that he would show it to others and lead them to greater faith and love and good works.  For some reason, I lost touch with those fiery prayers after a while.  But after reading about Ian, I'm excited to reignite these pleas to the Lord.

I took a daydreaming peek into the future today, prayerfully hoping that as Mike and I grow older, we would give over Marcus' physical care over to Audrey and Derek.  But, Lord-willing, as we prepare to leave this earth, that we would leave Marcus to care for his siblings' souls.  It is the longing of our hearts, that our Savior would prove Himself all-sufficient and the source of every spiritual blessing so that Marcus' heart would overflow even if his body is weak, that his faith would remain firm even if his legs give out, that his heart would see Christ clearly even if his eyes grow dim.

My heart is aflutter, excited at what the future holds for my son.

Better Than Normal

There's an ideal threaded through my daily life, and even through this blog, that "normal" is the goal of my life.  It must've started when we first asked the doctor, "Will Marcus have a normal life?"  And when the answer on the other side of the phone was hesitant at best, I unconsciously made it my aim to prove her wrong, to give Joubert Syndrome a slap in the face by making sure our family could do normal.

We've done a pretty good job so far.





Better than most, I think, because whenever we do something ordinary, my heart swells knowing it's anything but.







It's the gift that special needs has given us...making us hyper sensitive to life and able to appreciate when things just are.





But maybe I'm aware of regular life because behind the pictures and smiles, there's the all-too present reality that life is different for us.



Besides the fact that walking and talking and seeing are difficult, I know the my son also thinks and feels and relates differently...which means the rest of us do too.



I sometimes coax myself into thinking that our life is just like everyone else's.





And more often than not, I try to convince the outside world that our day to day is just like theirs.



But then Joubert Syndrome creeps up to tap me on the shoulder and rock its pointy finger at me as a reminder that we are a different kind of family. These shoulder taps come in many forms. Like spending a great day with my sister at the beach but having to hold Marcus across the sand while the others walk. Or trying to leave him to play by himself for a bit, only to run back quickly because he's anxious to be alone or gets frustrated with not being able to do things on his own. Or having to give him a pep talk before going potty in public because "the toilets are too loud, Mommy!" Or seeing all the other kids run around and play together while Marcus sits on the ground by himself with a toy.

These kinds of reminders sting deeply. Yet while I mourn the occasional loss of normal daily life, the Lord taps my heart to remind me of greater realities:

How precious is Your lovingkindness, O God!

Therefore the children of men put their trust under the shadow of Your wings.

They are abundantly satisfied with the fullness of Your house,

And you give them drink from the river of Your pleasures.

For with You is the fountain of life;

In Your light we see light.

Psalm 36:7-9

So maybe we aren't completely normal. But I may be right to say that our lives are even better than normal. Because the stings and scrapes we encounter are used by God to turn are eyes to Him. I don't have to just live a regular life. I can find shelter in Him who is the fountain of life.