Ah-Choo!

Some days, everything goes perfectly according to plan.

You convince Mommy and Daddy to take you out for lunch.  Then, amazingly, your big brother and little brother both take naps.  So you fool your parents into letting you stay up.

Suddenly, you realize you have Mommy and Daddy all to yourself for the next two hours.  You quickly sucker them into playing a game with you by flashing your sweet smile.

What follows is a hilarious game of sneezing the hat off, which by the way is one of your favorite games.  You and Mommy and Daddy take turns putting on the hat and then nodding your heads while saying, "Ah-ah-ah-ah-choo!"  As the word "choo" is spoken, the hat goes flying off.

Each time, you giggle at the funny joke you are sharing with Mommy and Daddy.  What you don't know is that Mommy and Daddy love playing with you just as much as you love playing with them.

They delight in laughing with you.  Some day, you'll have to pull the wool over their eyes again and play another special nap-time game with them.

Verbal Extravaganza

 Dearest Liam,

It seems that in the time that it took me to blink, you went from a little 11 month old with huge verbal delays to a 16 month old who talks nonstop.  When I look at you, I see God's mercy and kindness, both on you and on our family.  I often have to fight back tears as you run around talking with such excellent articulation.  Your words are beautiful, my son. I never fully appreciated your oldest brother's gift with speech, but with you, I take nothing for granted.  Every new word that you say is a reason to rejoice.  Every two word phrase you speak is a moment for me to pause and thank God.

Your struggles are not over, and I am very aware of how sensory and motor planning issues may affect you for the rest of your life.  But for now, I am rejoicing in how God has used your wonderful therapists to give your little body the kick start it needed.

As I sat down to write, I thought I'd do a quick tally to see how many words you are speaking now.  Needless to say, I was shocked to find that I came up with a list of over 70 words in just a few minutes.  And many of these words are spoken so clearly that even a stranger could understand you.  As well, you started using two word phrases a month ago and regularly surprise me again as you put different words together.

I love sitting down with you to take your shoes off.  You start repeatedly saying "shoe off" until I remove your shoes.  Then, you give me a little grin, grab your socks, and start saying "pull" with such a groan that I must suppress a laugh at your exaggerated effort.

Another thing I love about you is that you enjoy walking around the house pointing out things that are off limits and saying to me with a very serious face, "No! No, no touch!"  Other times, when I'm emptying the dishwasher or something else that you are very interested in, you quickly run over and start touching everything.  Then you seriously look up at me, say "No, no touch!", give me your mischievous grin, and continue touching with a little giggle.  You are going to give me a run for my money as you grow up, little mister.  That much is already apparent.

You also do a great job of reminding yourself "no hit" before hitting me in the face, laughing loudly, and then going back to hit me again.  It seems that you are picking up on some of your big brother's less appropriate behaviors.  (You also love to spin in circles with him while laughing and saying "spin".)  Don't you worry; we are addressing these behaviors!  But the good news is that you will (hopefully) grow out of these things much sooner than he will, as it is obvious that you are doing these things out of imitation and admiration of your big brother rather than as a need for proprioceptive and vestibular input.

Which reminds me, one of my favorite phrases of yours is "Out? Ok!", which you say to me when I come in to get you out of your crib in the morning.  I particularly love this because you have picked it up from your big brother, who regularly asks and then answers his own questions, such as "I want snack!  Yes?  Ok!"  It is such a joy to me to see how closely you watch your big brothers and, in your admiration of them, how much you desire to emulate them.

In fact, when your big brother is napping, I have to be on my toes to catch you before you run over to his door, loudly proclaiming "open door".  I'm still not sure if you are missing him or his toys more, but either way, it is endearing to see how you notice that he is gone and want me to help you find him.

Then this morning you surprised me as I was packing you up to head out for speech/feeding therapy (which you are ever so close to graduating from! You just need to start drinking out of anything other than your bottle, which you are firmly attached to!)  As I told you we were going to see Miss Char, you looked up at me with your little serious face and said "Char. Eat." Yes, little buddy, that's right.  We're going to go see Miss Char and work on your eating skills. Clearly, your speech skills are good to go at this point.

And can I take a moment to be honest with you Liam?  Sometimes, as I listen to you speak with such effortlessness, I feel a twinge of pain in my heart.  It hurts to watch you already begin to surpass your brother verbally.  My heart sometimes feels like it's being tied up in knots as I hear your amazing clarity of speech and then watch your brother struggle so much to say a word.  I am so very proud of you.  And I want you to know that.  I will always be your biggest cheerleader.  But since I'm your brother's biggest cheerleader too, my heart breaks as I am reminded of just how hard this life is for him.  You see, I love him just as much as I love you, and watching your effortless speech is a reminder to me of just how hard everything is and will be for him in this life.  Please be patient with me, my son.  Please forgive the times that I have tears in my eyes as I watch your magnificent accomplishments.

While I am being honest with you, I pray for you, my son, that God will give you a tender but strong heart.  I pray that your heart will be strong enough to withstand the mocking that you will surely receive for associating with your brother.  And I pray that your heart will remain tender toward your big brother for the rest of your life.  May you always be patient with him, coming alongside him and guiding him through this life. It is only a matter of a year or so before you surpass him in every way.  When you do that, please don't leave him in the dust. Take him by the hand and help him.  Be his best friend and his protector.  Show this world what it means to love Jesus in the way that you love your brother.

I love you, my son.  Your laugh is infectious, and your joy permeates everything that you do. You bring sunlight into our home just by being here.  We are so blessed to have you!

Love,
Mama

* Your words at 16 months (at least what I can remember):  open, up, down, close, help, please, monkey, bear, circle, beep, bagel, pizza, milk, coke, more, door, car, shoe, sock, pull, off, no, touch, march, Bob (the tomato), run, Zach, bite, burger, fry, cow, dog, woof woof, pig, block, eat, duck, quack quack, night night, giraffe, pants, shirt, brush, toes, foot, cracker, all done, all gone, nugget, sit, push, spin, hit, medicine, yellow, blue, book, ball, hi, bye, juice, hug, poop, oh no!, oh my!, plate, fork, spoon, sword, baby, waffle, cookie

Four Years of Joy

My dearest Wesley,

Last week we celebrated four years of life, four years that have brought much change to our family and much joy.

This past year has been a big year for you.  You have now completed your first year of school, and we are so very proud of you.  As I look back on the past twelve months, I am amazed at how far you have come.  You now speak in two word phrases all the time, including your constant requests to us this week to "sing Birthday!"  You know all of your capital letters and more than half of your lowercase letters.  You are learning to count to ten, and I often hear you counting to yourself: "one, koo, fee, five, eight, nine, ten!  Yay!  Woohoo!"  You are your own best cheerleader, often praising yourself and cheering yourself on when you are working hard.  In fact, when we've asked you to do something you don't want to do, upon completion of the task, you will often clap for yourself while saying "Yay!"

This year you also learned to jump, walk up the stairs safely, walk down the stairs with supervision, and play much more safely on playgrounds.  Just this week, you climbed up the climbing wall at our park to go down the slide over and over again, determined to master the wall and so very proud of yourself every time you reached the top.  You have made great strides forward with fine motor skills, now drawing circles and crosses along with the vertical and horizontal lines we used to work on.  You do an excellent job of showing us how to draw a cross, first sliding your finger down the paper while saying "down" and then sliding your finger from left to right and saying "across".

We love listening to all the things you say now.  Last year you had about thirty words but still mostly used your picture board and communication device.  Now, you talk all the time. Instead of showing me pictures, I hear things like "eat yogurt" or "play outside" or "help please". As a result, I see so much less frustration in you because of a lack of an ability to communicate.  You tell us when you want to ride in the car, which toys you want to play with, what you want to eat, as well as who you played with at school.  You love to label things, such as "blue car" or "yellow block".  When we ask you yes or no questions, you answer them with ease, not even needing to pause to think about it.  You even tell us when you want to spin things, which is helpful since this is a behavior we are trying to curb.  Every time we drive past any fast food restaurant of any kind, I hear you calling out "eat fries" from the back seat with a hopeful voice.

I have also been encouraged recently with your willingness and ability to work more on diction and intelligibility in your speech.  Because of your struggles with oral motor skills and motor planning in general, speech clarity is difficult for you.  But as you grow older, we are able to work more on these things and are seeing such an improvement.  In fact, your love of letters has been such a help in this area, as we put together letters for you to work on sounding them out to make words.  You are by no means reading, but we are using these early reading tools to help you with diction since you love to learn this way.  We even found a fantastic app for Mommy's iphone to help with this, since using with Mommy's phone is always a draw for you.  In the past few weeks, you're slowly adding some "t"s and "s"s to your words. You now say "t-mummy" for tummy instead of "mummy", "ou-t" instead of "ouk", "s-poom" for spoon instead of "poom", and so on.  You still need that little pause to think about where to place your tongue, but the improvement is significant! We are so very proud of you!

You are such a sweet big brother, often sharing your snacks willingly and helping me to feed Liam while he is in the highchair.  You love to splash with him in the bathtub, and it thrills you to no end when he thinks what you're doing is funny.

And you are learning to play games with your big brother too.  You love to play Hullabaloo and a modified version of a Maisy Mouse matching game with him.  As well, games of chase, duck-duck-goose, and hide-and-go-seek in the dark with flashlights are always filled with much laughter from the two of you.

You have also grown tremendously this year in your ability to sit still and listen and to play independently. You now enjoy sitting in your cube chair and listening to us read you books, often listening to us read story after story.  I also catch you kicking balls around, building lego towers, stacking blocks, and building train tracks on your own these days.  Another thing you often do, which fills my heart with joy, is pull out your Bible story books from the shelf, paging through them, carefully examining the pictures, and babbling away as you are seemingly re-telling the stories you've heard me read so many times.

What brings me the most joy is seeing how very drawn you are to your Bible story books in comparison to any other book.  While you enjoy listening to any story, you will look at your Bible story books for long periods of time, often shocking me with how long your attention span can be for them.  You also suddenly have become interested in praying.  You fold your hands and sit quietly when we pray, saying "Amen" with us when we finish.  And you now repeat words to pray yourself as well.  Earlier this week, I was nearly brought to tears as I watched you earnestly pray to Jesus to help you after one failed blood prick for your annual blood draw.  After praying, you settled down, stopped fighting, and allowed the nurse to draw blood from your other arm.  Then you thanked Jesus for helping you.  Every woman in that room bore witness to how you brought your request to Jesus with the faith of a child and how Jesus answered your prayer, helping you  to sit still and obey even when you didn't want to. What a testament you were to the power of God and of His love for His children.

I love you so much, my son, and you bring such joy to my life.  I pray that this year you will understand even more of who Jesus is and how much He loves you, and that one day you will put your trust in Him as your Savior.  I pray that God will use your life to reflect His lovingkindness to all those around you, as it is evident that He is already doing.

Love,
Mommy

Our Therapist, Our Friend

Several weeks ago we said goodbye to a dear woman who had in many ways become like family to us in the year that we knew her.  She knew and understood the ins and outs of Wesley's strengths and struggles better than most, and she had a true gift in helping him.  With her guidance, Wesley began playing games this year and trying new things that had overwhelmed his sensory system up until now.  Through her instruction, we began implementing structures at home that have helped him to understand boundaries, routines, and rules.  As well, because of her own past, she could relate to Zach as Wesley's brother and was a help to me in encouraging me to pursue specific outlets for him.

When concerns for Liam began showing up, she recognized the red flags and took him under her wing.  She was able to quickly identify the sensory and motor planning areas that he most struggled with and put together a plan to help him, including beginning the same brushing and compression regimen we used to use with Wesley and putting him into a SPIO vest.  And God used her skill and care for our boy to completely change his life.  Within a month, he was a different child.  Now, four months later, the 40% delays in speech, feeding and fine motor skills are all but gone.

When I look back at the past year, I can clearly see how God brought her into our lives for such a time as this.  Our boys are different than they would have been because of her.  And although she has now moved on to new and exciting opportunities, she has given us wonderful tools to continue to help our boys as we move forward.  We will never forget her and the gift that she was to us.

The Love of God Displayed

A few weeks ago, as we faced the prospect of two surgeries, one to replace the tubes in Wesley's ears and one to repair my umbilical hernia, the thought of caring for our boys while also attempting to maintain our daily schedule of therapy and school seemed daunting, if not impossible.  But it was in the midst of this that God displayed His love and care for us.  God provided far and above all that we could have asked for, through ladies in our church who love Him and as a result have a heart to serve those in need around them.  We were so blessed to see firsthand what the love of God looks like as displayed through these dear ladies.

Love is offering (last minute) to leave your house by 5:15 in the morning to care for boys all day while their parents take their brother to the hospital for surgery.

Love is graciously following specific guidelines to bring delicious meals to a family full of picky eaters.

Love is spending a week full of twelve hour days caring for three boys while Mom lies nearby and watches.

Love, especially for a college student, is arriving at our house promptly at 6:30 every morning, ready to serve the moment you walk in the door.

Love is changing explosive diarrhea numerous times with a smile on your face.

Love is being slapped in the face more times in a week than you've been hit in your entire life and responding graciously each time.

Love is leaving your family to fend for themselves and coming over to watch the boys for an hour and clean up the house before Daddy walks in the door from a long day's work.

Love is emptying the dishwasher and cleaning the kitchen when you quickly notice that Mom is too weak even to lift a plate.

Love is joyfully playing with three boys even when you're weary and they have been pulling you in three directions all day long.

Love is playing games over and over and over again with a three-year-old who adores you and won't let you leave his side.

Love is stopping everything you are doing to comfort that same three-year-old who is in tears because he couldn't find you and feared that you were gone.

Love is rushing around to get boys from school to therapy to school to therapy to lunch to naps every day for a week with energy and a cheerful countenance.

Love is selflessly serving those in need, showing them the same love that Jesus has shown to you.

(And, it's possible that as you love this family, you will find that a sweet three-year-old little boy has carved out a little spot for himself in your heart and wrapped you around his little finger. While the family you are serving will never be able to thank you enough for everything you have done, you may just find it to be true that it is more blessed to give than to receive.)

Finding Refuge Through God's Word

This post is part of a series. Click on the following links to read Part 1, Part 2, Part 3, and Part 4.

I want to conclude this series by introducing a woman who has been an example to me of what it looks like to find our refuge in God.

Krista Horning is the author of my favorite book on disability.  As she has walked through life with Apert Syndrome, God's sovereignty and goodness have become a refuge for her soul in the midst of a life she did not expect to live.

I had the opportunity to meet Krista last November at a conference on disability, and God's glorious grace radiates in her life.  This young lady has suffered much in her life.  She has fought hard to believe the promises of God, and she has found refuge in God as she has come to know Him through His Word.

At Desiring God's Disability Conference, she shared her testimony.  I was undone as I listened to her words:

Disability says ugly things to me.
It tells me I am alone.
I am different.
I am worthless.
I am weak.
It tells me my life is hopeless.
Disability lies to me, and sometimes it is easy to listen and believe.
Sometimes I don't want to live with a disability.
Sometimes I don't want to be who God made me to be.

She went on to share how God's word is a refuge to her soul, and what it looks like for her to cling to this refuge.  Then Krista concluded with these words:

For now I live with disability.
Disability still says ugly things to me.
Disability is a part of this broken sin-filled world.  

But God has so many beautiful things to say.
And so I’m filled with hope.
God’s words grow louder and louder in my life.
The glory of His grace and mercy grow stronger and stronger.  

I need to listen to His words.
I want to listen to His words.  

God's words change everything.
God’s beautiful words have changed my life.
And that is how I live with disability.

If you have ten minutes, listen to her testimony and be encouraged.

How Do We Find Refuge In God?

This post is part of a series.  Click on the following links to read Part 1, Part 2, and Part 3.

God is always our refuge, whether we are aware of it or not.  What changes is whether our eyes are on the storms of this life or whether we set our eyes on him and see who He is, what He has done for us on the cross, and what He promises to give us for all of eternity.  The question is not whether or not God is our refuge.  For those of us who have trusted in Jesus as our Savior, God has already promised that He is.  Praise God, that will never change.  The question is whether or not we are taking advantage of it.

So, if God is our refuge, what does it look like to find our refuge in Him?

I have heard it said that we find our refuge from the Lord when we set aside time to get away from our lives and spend time with Him.  But I don't think that's what it looks like.  I don't just find my refuge in the Lord when I am in my closet praying before the sun rises and I step out to face the day on my own.  I find my refuge in the Lord when the three boys and I are at the doctor, no one has eaten lunch, everyone is missing their naps, the boys are all crying, and yet, I am not overwhelmed.  In that moment, God is giving me a peace that surpasses understanding.  In that moment, He is my refuge.  My circumstances have not changed.  He has not removed me from the hardships of life.  But He has answered my cry for help.  He is with me.  And He is protecting my heart from crumbling to a state of being overwhelmed, anxious, and angry at my children.

But God is also my refuge when I don't see it.

He is my refuge when one of my sons receives another heartbreaking diagnosis that leaves me feeling like a failure of a parent.

He is my refuge when I am paralyzed with fear for the life of my husband.

He is my refuge when we are facing two (possibly three) upcoming surgeries, are struggling to find childcare help, and I am faced with the possibility that I will be unable to care for my family for three weeks.

He is my refuge when we add four therapies a week to our already packed schedule.

He is my refuge when I'm weighed down with guilt because I am not faithfully working with my boys each day to reinforce things they work on at therapy.

He is my refuge when I stagger under the weight of my responsibilities.

He is my refuge as I work unceasingly to help Wesley play appropriately rather than stimming.

He is my refuge when I wallow in self-condemnation for all of the times I ignore Wesley's behavior so that I can have a moment of quiet and rest.

He is my refuge when I weep at the affects of disability on our family.

He is my refuge when the words of Psalm 22 echo the cries of my heart.  "My God, my God, why have you forsaken me? Why are you so far from saving me, from the words of my groaning?  O my God, I cry by day, but you do not answer, and by night, but I find no rest."

As I cry out to the Lord with a broken heart, I read the words "In you our fathers trusted; they trusted and you delivered them.  To you they cried and were rescued; in you they trusted and were not put to shame."  It is true.  The Lord is near to the brokenhearted and saves the crushed in spirit.  In that moment, I may not have a tangible sense of God's presence, but I know I have a promise.  As I desperately clutch the promise, I cry out, "But you, O Lord, do not be far off!  O you my help, come quickly to my aid!  Deliver my soul from the sword."  And He will.  He has promised that whatever else may happen, He will deliver my soul.  "For he has not despised or abhorred the affliction of the afflicted, and he has not hidden his face from him, but has heard, when he cried to him."

So, as Psalm 46 instructs us to "Be still, and know that I am God," let us ask the Lord to still our anxious hearts.  Our fretting won't change our circumstances.  It will only leave us tattered and worn.  Instead, let us come to Jesus with our broken and heavy laden hearts and there find rest for our weary souls.  In the midst of the trials that we walk through, let us lay our burdens at His feet and find refuge under His wings.  He will not leave us or forsake us.

God is a refuge for our souls.  He is our very present help in trouble.