Six Months

My Dear Liam,

In five short days, you will be six months old!  How does the time pass so quickly?  With your older brothers, I was always anticipating what they would learn next and working with them to help them meet developmental milestones.  With you, I wish that I could just freeze time and enjoy you as you are now.  Moments turn to minutes, which turn to hours, days, weeks, and now half a year.  In just the blink of an eye, you've grown up on me without me getting enough out of those baby months with you.

Last night as I sat in bed nursing you, the house was silent with the peace of sleeping boys. You fell asleep in my arms, and although I was so tired I could barely keep my eyes open, I held you and admired your every feature, pulling you close to me and feeling your chest rise and fall with each breath that brought you deeper and deeper into sleep.  As I rubbed your wispy blonde hair between my fingers and admired your little hand wrapped around my finger, I wished that somehow I could remember this moment forever.  Your peaceful expression and your sleepy smile as I whispered how much I love you were just so very precious.

When I open your door each morning, your head pops up like a rocket and you stretch as high as you can to see if you can find me in your dark room.  You frantically kick your legs and swing your arms, reaching for me as you impatiently wait for breakfast.  After eating, as I change your diaper, you giggle and give me your biggest toothless grin.  Once you are ready, we go into your big brothers' room.  As I dress Wesley, you happily roll around on the floor and play with your toys (or his).  I thank God every morning for blessing me with such a content baby.  I am continually amazed that you will play happily for 45 minutes each morning while I get your brothers ready for school.  You easily entertain yourself with your toys until I come to get you again.

You are our first baby to really want big people food.  Rice cereal is not your preference and squash is OK, but french fries and freezer pops and soda...now those are delicious!  You clearly know where soda comes out of the can, and every time you see Daddy with one, you reach for it and carefully manipulate the can to get the top to your mouth.  When Daddy pulls a freezer pop out of the freezer, your little tongue starts going a mile a minute as you wait for him to offer you a taste.  And when we go to Chipotle, you are thrilled that Wesley shares his guacamole with you.

You are also my first baby to really snuggle with me.  Your brothers never liked to be held facing in, but lately that seems to calm you when you are particularly upset.  Whenever I pick you up, you burrow your head into my shoulder and snuggle in for a moment before resting against me and lifting your head up to look around and explore the world.  You would be happy if I held you like this all the time, but unfortunately that leaves me with no free hands to help your brothers.

While I speak of firsts, you are also my first baby to really discover his toes!  I always laughed when therapists were concerned that Wesley did not play with his toes, because Zach never played with his either.  But you are fascinated with yours.  You lean down when you are sitting in your Bumbo seat so that you can inspect them carefully, and you grab at them as I change your diaper.  You would probably play with them more often if you didn't roll over onto your tummy as soon as I set you down on a blanket.  That makes playing with toes a bit more difficult.

Your smile brightens my life.  You are such a personable baby, looking intently at others and patiently waiting until they notice you.  As soon as someone looks your way, you break out your million dollar smile and get so excited that your little head bobbles as your legs kick and your hands wave.  Most of the time you are pretty quiet, content to observe the world around you, but in the last week or so you have started squealing quite loudly.  You also learned to babble "dada" and thoroughly enjoy the attention you get as we all gather around you and encourage you.

God has given you and Zach a special bond, and I love watching how he cares for you, talking so sweetly with you and making you giggle with his antics.  He loves to hug you and keep you happy.  The other day I caught him reading a book to you quite animatedly as you gave him your best belly laugh.  Wesley loves you too, but he is still learning to be gentle. Sometimes when he "gently" rubs your head, he puts a little bit too much pressure into it, and you are not a big fan.  And you don't know what to do with his energy when he runs straight toward you, narrowly missing you.  You close your eyes and brace yourself, not knowing if this will be the big blow you've been waiting for these past six months or just another close call.

Today I was reminded again of how unique you are when I pulled you out of your stroller and Wesley's new physical therapist commented that you look like neither of your brothers.  You are definitely not made in the mold of Zach or Wesley.  You are your own individual person, and even as a baby I am thoroughly enjoying watching as you do things so differently than your brothers did.  God has blessed me abundantly and far more than I deserve in giving you to me.  You are the third child that I never thought we would have, and I am so thankful that God saw fit to give you to us.  While I still wish that I could hold on to your baby sweetness for a bit longer, I look forward to enjoying each day as you learn new things and grow up to be the man that God has called you to be.

I love you, my sweet and precious son.

Love,
Mama

Knowing Jesus Is Better Than Life

How do we respond when God calls us to walk through trials that result in significant pain and heartache?

Josh McPherson, the pastor at Grace Covenant Church, beautifully articulates in his sermon, which you can listen to or read, the work that God has done in his heart since his first daughter was born with Spina Bifida seven years ago.

First, God redefined the word tragedy for him.

Then one day the Lord spoke to me very clearly. It was as if He said, “Josh, you’re looking at it all wrong. Tragedy is not your daughter growing up with two legs that don’t work. Tragedy is your daughter growing up with two legs that work, and walking away from me in her heart. Tragedy is her growing up with two legs that work, and her finding identity in how fast those legs carry her around a track, rather than finding her identity in my Son who carried her sins on His shoulders.”

Second, God helped him to see that God is most glorified in us when we are most satisfied in Him.

This truth compelled me and freed me to, at any cost, pursue my joy in Christ so hard that no pain could shake it, and no earthly pleasure could compete with it. More than that, it worked the other way around too. Not only was God most glorified in me when I was most satisfied in Him...as He was more glorified, my heart was more satisfied! What an amazing truth! No longer did I have to fear God gaining glory out of my life in whatever way He saw fit as if He was taking His pound of flesh...rather, I now realized that the more glory He gained in my life the more ultimate and deeper and greater my experience of MY JOY! God’s desire to be glorified and my desire to be satisfied WERE NOT AT ODDS. They came together in the glory of Jesus. THAT was a freeing truth that I will ever be grateful to John Piper for helping me see.

Third, he simply could not get away from the relentless and consistent testimony of Scripture that God is over all things.

So I begin to see from all over the Scriptures, from the smallest detail of life, to the most epic event in the history of mankind, God was governing them all for his good purposes. And we've been seeing how true that is in our study of Acts. Good, evil, happy, sad, glory, despair, gladness, pain, suffering, brokeness, pleasure, Christian, pagan, the Lord over sees it all. Nothing happens that does not happen in His world, where He reigns supreme.

Upon discovering last December that his son would soon also be born with Spina Bifida, the work of God in Josh's life over the past seven years is evident as he penned this beautiful letter.

So son, we believe you are a part of God’s plan for our life, and more importantly, a part of God’s plan for his glory. (And that’s good news for us...more joy!) 

You are not a mistake. You are not a statistic. You are not a tragedy or an accident. You are not an inconvenience. You will not be defined by a birth defect. You are God’s craftsmanship, you have been hand-knitted in your mother’s womb to his perfect and exact specifications, and you are our son. 

We’re already proud of you, and have big expectations for how the Lord will use you in our lives and those of others. God is giving you a unique opportunity to display His glory, and we count it a great gift that He would choose to give that opportunity to us. Yours will be a life that God will use like a megaphone to wake up a deaf world. Knowing Jesus is better than life. 

You haven’t even arrived yet, and you’re already teaching us more about God’s grace, just like your older sister did. You are already a gift. It will be one of my greatest privileges to be your father, and to teach you in whatever capacity your mind can grasp, what it means to be a man, to love the Lord, to follow Jesus, and to run with all your might the race of faith He’s marked out for you. Your mother, and your siblings are very anxious to get you here, so hurry it up. 

Oh, and son, I know some things will be hard when you get here. That’s ok. We’ll work through them together. And when you ask me, I’ll be ready with the answer... “God sits enthroned in the Heavens, and He does all that He pleases.” And it pleased Him to make you, exactly how He did. Because He wanted you to experience the joy of Him using your life to glorify Himself. What a privilege son. Counted worthy to glorify Jesus. What an honor. 

And there’s even better news. It may get a little tough while you’re here, but check this out...it’s our family’s favorite verse. It’s found in the last book of the Bible, talking about the end of the story as God writes it, and trust me, you are going to LOVE what it says: 

“And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning nor crying nor pain anymore, for the former things have passed away. 

And he who was seated on the throne said, “Behold, I am making all things new.” Rev. 21:5 

That includes me, and your sister, and you. So take hope, be a man, and remember son, 

Ye fearful saints, fresh courage take,
The clouds ye so much dread
Are big with mercy, and shall break
In blessings on your head.

Judge not the Lord by feeble sense,
But trust Him for His grace;
Behind a frowning providence
He hides a smiling face.

 I can't wait to see yours, 
 Dad

A Snapshot of a Three Year Old

My Dear Wesley,

You are three years old now, and the older you get, the more I find that baby books do not do you justice.  These books have small lines with specific milestones listed to help mothers roughly sketch together memories to remember once their children are grown.

However, you, my dear child, do not follow the guidelines necessary for filling out these books. You skip around, allowing me to fill in information for some milestones while leaving other spots empty for years.

On the other hand, you meet many small milestones that are so important and special to us that there isn't nearly enough room to document in a baby book.

So I want to take the opportunity this afternoon to remember where you are to today - to freeze this moment in time so I can someday remember you as you are at three years and one month.

On an average morning, you wake up somewhere between six and six-thirty and babble to yourself until seven when I come in to get you.  Lately you have started pulling the curtains open as well, to let the sun shine in.  This is a great source of entertainment to you, and we often hear you laughing as you pull the curtains into your bed and swish them around.

You are starting to help with the dressing process.  Now, after I change your diaper and put on your SPIO vest, you put your legs into your pants and pull them up (with a little help from mama).  You put your arms into your sleeves after I've pulled your shirt over your head, and you give me your feet so I can put on your socks, SureStep braces, and shoes.  Then, you put out your wrists and ankles for me as I put on your weighted vest, ankle, and wrist weights to help calm your sensory system in preparation for the day ahead.  Last of all, you laugh as I pull out your hair gel.  Letting mama make your hair all spiky is one of your favorites!

You now understand safety when going up and down the stairs, so we are able to let you go up and down them by yourself without close supervision.  When going up, you climb on all fours, and when going down, you sit facing forward and scoot down step by step.  Under VERY close supervision, you can also walk up the stairs with one hand on the wall and go down the stairs with one hand on the wall and the other holding our hand.

We are so proud of how far you've come with eating.  You now drink exclusively from a straw. You were learning how to drink from an open cup with your feeding therapist, but you have never wanted to do this at home.  So now that you don't see her any more, all progress has stopped in this area.  As well, you are getting pretty good at eating with a spoon.  You love to eat oatmeal, apple sauce and yogurt all by yourself each morning for Mama, but you've proven yourself to be a little stinker.  Each weekend, you refuse to eat anything unless Daddy feeds it to you.  I think he's fairly confident that Mama is making up the fact that you're doing so well when he's not around.  You are also slowly learning to use a fork, but since you have difficulty with poking, this is going a bit more slowly.

You really are a great eater now, which is just another evidence of the work that God is doing in you.  You eat almost everything that Mama makes, although you still struggle with and gag on some textures. (We stay away from things like mashed potatoes and beans around here.) Your favorite things to eat are bananas, oatmeal, yogurt, apple sauce, chicken nuggets, spaghetti, peas, oranges, french fries, hot dogs and pretzels.  In the past two months, we also added milk back into your diet, and you love it!  Every day we thank God for healing your little tummy so that you can enjoy yummy things like milk and yogurt.

In the past two months we have also seen a big change in your play skills.  When you have time for free play, you still enjoy running off to spin something or pretending to eat with your spoon and cup, but now we often see you seeking out other things to do as well.  You enjoy pulling out your Lauri shape stacker, putting it together, sorting the shapes by color, and then stacking them.  You also regularly pull out your puzzles and your picture pegs to play with.  But what has touched Mama's heart the most is your newfound love of trains and books.  Zach set up his wooden train track again a few weeks ago, and for the first time, you noticed it! And you knew just exactly what to do.  You love pushing Percy and Thomas along the track and through the tunnel.  And when you're not playing with trains, you are happy to snuggle next to Mama and listen to some books.  Goodnight Moon has become your new favorite, and Mama and Daddy have found that twenty-five times is about the right number of times to read that book in one sitting.  You also enjoy your new Richard Scary book about colors.  Your favorite thing to do is point to all of the paint cans while Mama  names their colors.

We are so proud of how well you are adjusting to school.  You have surpassed all of your teacher's expectations, and we are now in the process of writing new goals for you as you have already met four of your initial goals for this year.  We initially wanted to put in a goal for helping you to learn your letters but were informed that we can only write goals on deficits and you have already surpassed the target skill of how many letters a three year old should know by the end of the first year of preschool.  At this point you accurately identify between 10 and 20 capital letters on any given day.  You are also learning how to use your new communication device much faster than any of us thought possible and can now maneuver through it quite easily to tell us what you want.  It still amazes me how fast you can maneuver through screens of pictures and words to find exactly what you want to say.

You are talking more and more, and just this week you started pointing too.  I can't tell you how very long we have been working with you to get you to point at what you want, so your little voice saying "this" as you point at those desired items is music to our ears.  You say "I want..." all the time and have started imitating "I love you" as well.  Your vocabulary is increasing by the day, but here is a list of the words I can remember that you are currently saying:  in, on, up, down (dah), out, eat, Mama, Dada, I, want (wa), this, that, car (cah), ball (bah), fish (f), more (m), help (h), all done (a da), night night (nah nah), hi, bye, bus (bah), open (up), off, yes, coke (guk), set (s), go (gah), cup (cah), bowl (bah), no (uh - with a head shake).  Wow, Wesley!  That's over thirty words!  I don't think I even realized you said quite so many.  We are so proud of you and how well you are talking these days.

You have impressed us with how quickly you are learning things lately.  You now know your six basic colors and shapes, along with most of your capital letters.  You are understanding instructions like "that sip was too small; take a bigger sip", or "bring your glasses to Daddy so he can clean them".  We are also impressed with how quickly you are picking up positional words such as under, behind, on top of, and next to.  Body parts are not something we have worked on very much, but you know some of the basics (hair, eyes, nose, mouth, ears, hands, feet, tummy).  You have recently become interested in counting, so that is what we will start working on next.  You are also doing a great job of stringing beads on a string with a dowel rod tip on the end, and you have started learning how to do puzzles with pieces that fit together rather than just puzzles where each piece goes into its individual slot.  You received a set of stringing beads with farm animals on them for your birthday, and we were surprised to find out that you recognize and can correctly identify all of them (even though they are painted with random colors).

This spring has been exciting for us as you have delighted in being outdoors.  You now maneuver through playgrounds all by yourself, going up the steps and down the slides with a big smile on your face.  When we go to a park with baby swings, you would be happy to let us push you for hours at a time.  You also love to color with chalk, kick a ball around the yard, blow bubbles, and watch Zach ride his bike.

Since starting school, you have started to notice other children.  Unfortunately, this means that you have also noticed Liam.  Hitting him on the head has become a favorite pastime of yours, which means training you to be gentle with him has become a full time job for us.  Thankfully you get along much better with your big brother.  You love to run around with Zach, and you adore his every move.  Anything he does, you try to imitate; every time he laughs, you join right in.

Your laugh is delightful, and you daily show us what it means to live life to the fullest, enjoying every moment.  As you run from spot to spot, engaging with the world around you, I love to sit back and watch you, capturing each moment in picture memories.

I love you so much, my sweet Wesley, and I thank God for the amazing work that He is doing in you.  I am so very proud of you and of how hard you work each and every day to learn all that we strive to teach you.  Your diligence and perseverance even when things are hard set an example for all those who know you!  And your delight in learning is so God-glorifying.  As you learn, you are soaking up more and more of the way God created the world to show us the beauty of Himself.  I pray that as you learn your colors and letters and numbers and explore the world around you, you will see God and grow up to love Him with all of your heart, soul and might.

Love,
Mama

Healing

Healing.

Why does God choose to heal some and not others?  How do I respond in my heart when I hear of someone else who prayed faithfully and watched God heal someone close to them?

Do I begrudge them this gift?

Or do I question my own faith?

Is it because they prayed more earnestly than I have?

Is it because they prayed, believing that God would answer their prayers, whereas there was doubt in my heart?

Is it because God loves them more than He loves me?  Than He loves my son?

The thing is, I believe that God CAN heal Wesley.

And I know that He loves Wesley just as much as He loves those whom He chooses to heal.

But God, in His unfathomable wisdom and love, has determined that He will receive far more glory and we will receive far more blessings if He waits to heal Wesley on that day, rather than today.

If God healed Wesley today, there is no doubt that we would rejoice and praise Him.  But, as Joni Erickson Tada has articulated so beautifully, "I continue to treasure in my heart quietly all those triple-fold blessings - no, not double - much more than that - triple....  He's given me the chance every day when I wake up to lean on Him out of desperate need.  And I know I would not be doing that had I been healed."

Isn't that what God wants?  For us to see our desperate need for Him and to turn to Him every moment of every day?  And if God uses Wesley to remind others of their need for a Savior and to show us all the glories of Jesus, then every moment of suffering in this life is completely worth it.  If God allows our joy in Him despite our circumstances to shine outward that others might see and know the love of God for themselves, then I would chose this path again and again.  And I know Wesley would too.

Wesley's life radiates God's glory.  And what a beautiful day it will be when the God who so deeply loves Wesley that He chose to permit his suffering on earth that He might use him to point many to Himself, personally draws Wesley to Himself and wipes every tear from his eyes. Then there will be no more mourning or pain or suffering.  Or disability.  What a glorious day that will be!

"So we do not lose heart.  Though our outer self is wasting away, our inner self is being renewed day by day.  For this light and momentary affliction is preparing us for an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal."  2 Corinthians 4:16-18

Capturing the Blessing

"Children are a gift from the Lord; they are a reward from him."  Psalm 127:3

Wesley is a joy and a delight and truly one of God's greatest blessings to our family.  But pictures do not do him justice.  He rarely grants us the privilege of adequately catching a special moment on camera.

So what a joy it was to me to receive this picture from Katie, a dear friend who so beautifully captured our celebration of Wesley's birthday.

This is the Wesley that we know and love - the Wesley whose smile and laughter and enthusiasm have filled our home with joy.

We All Need God

I recently watched this video where Ryan Pittman, a young man with Down Syndrome, shares his testimony of the work that Jesus has done in his life.  As I listened to his words, I was so encouraged to see a man who loves his Savior and has a heart to share the gospel with others.

And Ryan is right.  "God made all of us different.  But he also made us all the same.  We all need God."

His testimony is about two minutes long.

The Lonely Road to Great Gain

A few weeks ago, the lyrics of an old song by Green Day randomly flitted through my mind, and ever since then I have regularly found myself humming the song and reflecting on the words.

I walk a lonely road

The only one that I have ever known

Don't know where it goes

But it's home to me and I walk alone

I walk this empty street

On the Boulevard of Broken Dreams

When the city sleeps

And I'm the only one and I walk alone

My shadow's the only one who walks beside me

My shallow heart's the only thing that's beating

Sometimes I wish someone out there will find me

'Til then I walk alone

I walk alone

It's true.  The road that I walk is lonely.  I rush from school to therapy to school to doctor's appointments to another hurried drive-thru lunch to late naps as usual to rushing around to pick up the house/feed the baby/figure out dinner plans/prepare for the onslaught when nap time is over to helping boys survive until Daddy gets home while one desperately wants the attention that the other one's sensory needs require.

It is a difficult thing to go to events as a family, since Wesley struggles in groups.  So instead of enjoying spending time with friends, one of us always ends up caring for him, alone, and leaving discouraged, wishing we had just stayed home.

I rarely talk to my friends any more, as time is a precious commodity around here.  A few extra moments are hard to find.  And anyway, it seems that our lives reached the T in the road and mine went one way while theirs went the other.  Some days I honestly don't know how it's possible to maintain friendships with those outside of the world of disability.  Mine is a world that I cannot escape, so unless others press to get in and join me for a while, time goes by and relationships fade.

But thank God, I don't walk alone!  Jesus has found me.  He has saved me.  He has redeemed my life from the pit and crowned me with steadfast love and mercy.  He promises to never leave me or forsake me.

Sometimes the way God leads us is through the sea and His path for us is through the great waters.  During times like this, His footprints are often unseen. (Psalm 77:19)  But even though I am walking through the difficult waters, seemingly alone with no footprints to follow, this I know to be true:  He is with me.

"But now thus says the Lord, he who created you, O Jacob, he who formed you, O Israel:  'Fear not, for I have redeemed you; I have called you by name, you are mine.  When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.  For I am the Lord your God, the Holy One of Israel, your Savior....You are precious in my eyes, and honored, and I love you.'"  Isaiah 43:2-4

And though I don't see His footprints to know where He is leading me, I am seeing more and more that He is not leading me to a place but to a person...Himself.

Walking the lonely road gives me the opportunity to count all things as loss to gain Christ.

(S)uffering is nothing more than the taking away of bad things or good things that the world offers for our enjoyment—reputation, esteem among peers, job, money, spouse, sexual life, children, friends, health, strength, sight, hearing, success, etc. When these things are taken away (by force or by circumstance or by choice), we suffer. But if we have followed Paul and the teaching of Jesus and have already counted them as loss for the surpassing value of gaining Christ, then we are prepared to suffer.

If when you become a Christian you write a big red “LOSS” across all the things in the world except Christ, then when Christ calls you to forfeit some of those things, it is not strange or unexpected. The pain and the sorrow may be great. The tears may be many, as they were for Jesus in Gethsemane. But we will be prepared. We will know that the value of Christ surpasses all the things the world can offer and that in losing them we gain more of Christ. 

John Piper, Called to Suffer and Rejoice: That We Might Gain Christ, August 23, 1992.