The Lord Will Remember

Zach and I enjoyed a special moment together this afternoon.  Out of the blue, he informed me that one of his classmates made fun of his name today.  He did not seem at all fazed by it; he spoke of it as if he were passing along a tidbit of information.  But it gave me the opportunity to share with him the story of how Mommy and Daddy chose his name and how special it is to us.

I explained to Zach that before he was born, Mommy and Daddy had a baby girl, but that she died while she was still in Mommy's tummy.  It was so sweet to see Zach's questioning and concerned look as he asked why she had died.  His innocent question was such a reminder to me that the question of why there is specific pain in the world is a timeless one that will never be understood in full on this earth.

After Grace died, we prayed and prayed that God would give us another baby, and the Lord remembered us.  He heard our prayers and answered our petitions, giving us a precious baby boy.  We named him Zachary, which means "The Lord will remember", or "God has remembered".

Every time I call out Zach's name, I am reminded that the Lord did remember us.  He heard our cries to Him and in His lovingkindness and mercy toward us chose to bless us with another precious child.

"For this child I prayed, and the Lord has granted me my petition that I made to him." 
1 Samuel 1:27

Life Is A Vapor

As part of my Bible reading plan this year, I am currently reading through the book of Ecclesiastes.  I have read this book of the Bible before, but this time my perspective as a mom of a son with special needs has significantly impacted how I have responded to each passage.

Now, when I read Solomon's statement that "all is vanity (a vapor)", I agree with him in a way that I never did before. The pleasures and joys of this life truly are a vapor.  They will one day pass away.  The ESV Study Bible puts it beautifully when it says, "The fact that all is vanity (a vapor) should drive people to take refuge in God, whose work endures forever and who is a rock for those who take shelter in him."

One particular passage that God has opened my eyes to see in a new light is Ecclesiastes 2:14-16.  I know that it refers to the foolish and the wise, but as I read it I thought of Wesley.  It seems to me that this verse would equally apply to people with and without disabilities.

"The wise person has eyes in his head, but the fool walks in darkness.  And yet I perceived that the same event happens to all of them.  Then I said in my heart, "What happens to the fool will happen to me also.  Why then have I been so very wise?"  And I said in my heart that this also is vanity.  For of the wise as of the fool there is no enduring remembrance, seeing that in the days to come all will have been long forgotten.  How the wise dies just like the fool!"

The ESV Study Bible explains that "wisdom, though infinitely better than folly, does not grant immortality to those who possess it:  the same event (death) happens to both the wise and the foolish.  To make matters still worse, even the wise are typically forgotten after their death and receive no enduring remembrance by others."  The same applies to disabilities. Whether God has created a person with many areas of gifting or with a disability, in the end that person will face death.  All of their successes in this life (or lack thereof) will be forgotten on earth and meaningless in light of eternity.

The only thing that will matter when we face death is whether or not we trusted in Jesus as our Savior while on earth.  Just as the treasures and accomplishments that I store up here on earth will be meaningless on that day, so also the lack of treasures and accomplishments that Wesley is able to store up will be equally meaningless.  It may seem disheartening to many that the wise and the foolish face the same fate, but to me these verses are of great comfort. While on this earth Wesley will never have many grand achievements, in the end the same thing will happen to him as will happen to me.  Our lives here are just a vapor, but our hope is in the promise of the forgiveness of our sins and an eternity with our Savior as children of God.

My Cross - My Present Glory

"My God, I have never thanked Thee for my thorn.  I have thanked Thee a thousand times for my roses, but not once for my thorn.  I have been looking forward to a world where I shall get compensation for my cross; but I have never thought of my cross as itself a present glory. Teach me the glory of my cross; teach me the value of my thorn.  Show me that I have climbed to Thee by the path of pain.  Show me that my tears have made my rainbows."

George Matheson (blind preacher of Scotland)

Operation Bunk Bed

After much anticipation, our latest project arrived mid-afternoon last Friday.  Zach watched with eager expectation as the delivery-men assembled it, which led me to believe that at least one of our boys would make the transition well.

Transitioning Wesley out of his crib and into a big boy bed was not a decision we made lightly. In addition to the normal concern that parents have of whether or not their child will stay in bed, we were also concerned with Wesley's general safety.  Wesley still doesn't grasp the general concepts of fear or safety, which means that falling head first over the guardrail, or not watching placement of his body and sitting down off of the bed, resulting in falling into the ladder, are not events that would surprise us in the least.

Also, unlike most children who transition from a crib to a bed, Wesley does not understand what is happening to him or why.  This is not an exciting event for him where he gets to be a big boy and share a room with his brother.  He is unaware of why we would ever remove him from the comfortable confines of his crib.  Over the past two and a half years, his crib has become his comfort zone, where he can unwind after a long day of sensory overstimulation. And now, without any warning, his place of comfort has been removed.

As a result, we decided to take it slow.  Wesley is still sleeping overnight in his crib, while we use nap time to train him to sleep in his bed.  In the meantime, Zach is napping in our room and enjoying every moment of sleeping on the top bunk at night.  To help with the transition, during nap time we lay down on the floor next to the bunk bed to monitor Wesley and make sure he doesn't stand up, jump while holding onto the guard rail, climb out of bed, or fall in some way, shape or form.  Until today, one of us also stayed in his room as he slept, to make sure he did not stand up or climb out of bed after waking up.  After three days of him waking up and just sitting up and crying until we retrieved him from his bed, I put the baby monitor in their room today and am ready to make a run for it as soon as I hear him cry out.

So far the transition has gone much better than we expected.  Below is the breakdown of our experience so far:

Day 1:  Wesley learns that Mama means business!  He cried for thirty minutes while sitting, sucking his thumb, and holding his comfort burp cloth.  Then, he lay down and fell asleep. After forty-five minutes, he bumped into his guard rail, woke up, and cried for another twenty minutes before Mama determined he was not going to fall asleep again and just got him up. Wesley never attempted to get out of the bed on his own.  Overall, we considered day 1 a success.

Day 2:  Wesley finds Daddy's soft spot.  After crying for an hour, Wesley broke Daddy's heart, and Daddy got him up.

Day 3:  Wesley naps spectacularly!  Wesley cried for ten minutes or so, and then lay down and slept for two hours.  Upon waking up, he sat up, sucked his thumb, cried, and waited for me to get him up.

Day 4:  Wesley learns that when Mama says "no", she means it!  Wesley insisted on jumping while holding on to his guardrail and standing up to poke at the posts on the bunk bed.  For thirty minutes, he would stand up, I would say "no", lay him back down again, and then he would stand up again.  Finally, he was so frustrated with me that he cried angrily, lay down to suck his thumb and comfort himself, and fell asleep.  Again, he slept for two hours and sat up and cried for me when he woke up.  This time though, he stood up next to the rail when I went to pull him out of bed.  We'll have to work on that.

Day 5:  Exhaustion leads to success!  We got home from a doctor's appointment at three o'clock, so after one reminder to not jump, Wesley lay down, sucked his thumb, and fell asleep.  He did learn, though, that if you lie perpendicular to the bed rail with your legs up in the air and then roll over to where the bed rail ends, it is very difficult to get back on the bed again.  Thankfully he figured it out himself without my needing to get involved.  So far, two-and-a-half hours later, he's still sleeping....

While we still have a long way to go and a lot of things to work out before we'll be ready to transition Wesley to the bed overnight, we are currently very encouraged with how well the transition is going.

Look At Me Go!

This morning was one of those mornings.  I saw it coming a mile away, but unfortunately there was no way to avoid the tornado of wrath headed in my direction.

Wesley has had a very difficult time adjusting to Zach being back at school, which has resulted in many tearful and mopey mornings around here.  Any time Wesley is required to do anything he considers unpleasant while Zach is gone, it tends to tip him over the edge.  Which brings us to this morning, when Wesley decided to throw a gigantic temper tantrum after returning from dropping Zach off at preschool, because I DARED to change his poopy diaper while his best friend was gone and unable to entertain him.  Poor boy was so furious that he continue to kick and scream through the first half hour of physical therapy.

By God's mercy, Wesley had a change of heart half way through therapy after angrily marching upstairs to get his comfort burp cloth.  From then on, he was such a sweet little delight.  We have been working on riding his ride-on toy for months now, and today it finally clicked for him!  As he grasped all of the intricate details of the motor plan required to maneuver his ride-on toy around the house, his joyful laugh was music to my ears.

Check out this video of my boy so proudly navigating his way across the room!

Whate'er My God Ordains Is Right

Whate’er my God ordains is right:
His holy will abideth;
I will be still whate’er He doth,
And follow where He guideth.
He is my God; though dark my road,
He holds me that I shall not fall:
Wherefore to Him I leave it all.

Whate’er my God ordains is right:
He never will deceive me;
He leads me by the proper path;
I know He will not leave me.
I take, content, what He hath sent;
His hand can turn my griefs away,
And patiently I wait His day.

Whate’er my God ordains is right:
His loving thought attends me;
No poison can be in the cup
That my Physician sends me.
My God is true; each morn anew
I’ll trust His grace unending,
My life to Him commending.

Whate’er my God ordains is right:
He is my Friend and Father;
He suffers naught to do me harm,
Though many storms may gather.
Now I may know both joy and woe,
Some day I shall see clearly
That He hath loved me dearly.

Whate’er my God ordains is right:
Though now this cup, in drinking,
May bitter seem to my faint heart,
I take it, all unshrinking.
My God is true; each morn anew
Sweet comfort yet shall fill my heart,
And pain and sorrow shall depart.

Whate’er my God ordains is right:
Here shall my stand be taken;
Though sorrow, need, or death be mine,
Yet I am not forsaken.
My Father’s care is round me there;
He holds me that I shall not fall:
And so to Him I leave it all.

Jumping, Etc...

This week Wesley discovered the art of jumping.  His jumps are not the most graceful movements I have ever seen, but I can assure you that I have never seen anyone enjoy jumping as much as he does.  He giggles as he bends his whole body and then launches it back up off the ground.  Then he is so amused by himself that he tips his head back and laughs again with a full belly laugh.  Sometimes his delight intensifies to the point that he can contain himself no longer and he screams with glee.

In fact, screaming seems to be Wesley's new found way to express his joy in life.  He loves to run through the house while screaming and laughing, or dance and scream, or smile at himself in the mirror and scream.  While his screams reach piercing decibels, it is difficult for me to do anything but smile and shake my head as I watch my boy run around enjoying life to the fullest.  (On the other hand, I do try to curtail his older brother's encouragement of his screaming.  One boy screaming, I can tolerate.  Two boys screaming is two too many.)

Wesley is also surprising us with his receptive and expressive language skills.  He has not been adding very many new words lately, but he HAS been attempting to communicate more with us and is showing that he is increasing in his understanding of what we are saying to him.  For example, on Wednesday he cried and stormed around the house all morning while Zach was at school.  There was nothing that I or his occupational therapist could do to console him. But then when it was time to leave and pick Zach up, I said to Wesley, "It's time to go get Zach from school."  He immediately stopped crying, said "Dak", and ran for the front door.  It was such a precious moment to see both how much he adores his older brother as well as how clearly he understood what I said - even with no gestures or pictures to explain myself to him.

Wesley is also a frequent user of the word "gak" to express his desire for more coke!  In fact, "gak" is one of the few words he will use without prompting.  While I wish his tastebuds preferred water to soda, I am humored by the fact that my little guy might singlehandedly change our family's word choice for carbonated beverages.  I laugh just thinking about my husband breaking down and using the generic word coke rather than soda after nine years of mocking me (and other Texans) for using the confusing term coke.  Well hubby, welcome to the club.  You can blame your son if you want to, but I love hearing that word come out of your mouth. :)

In other news,  fine motor skills have long been a missing part of Wesley's skill set.  Of course this also has a lot to do with his short attention span.  In the past few weeks, though, he seems to be taking off in these areas, and his accomplishments are impressive.  He is now consistently using his pincer grasp to take a piece of food out of a bowl (pretzels, goldfish, etc...), although he still uses a full hand grasp to reach for things that are by themselves and do not require a more advanced grasp (such as food spread out on his tray).  He has also started maneuvering puzzle pieces so that he can not only identify where they go but also fit them into their correct spot.  It is so encouraging to watch him study a puzzle and look at each spot before selecting where to place his puzzle piece.  Wesley even surprised his developmental therapist with his ability to use use his pincer grasp to manipulate puzzle pieces with small handles.  Until two weeks ago, he had only been attempting to place puzzle pieces with large wooden handles on them.  Then today, for the first time, he played with his pegboard and successfully placed pegs both into the holes on the board as well as stacked on top of each other.  This was a huge feat for him!

Keep up the good work Wesley!  We're so proud of you, little buddy!

Back to School

Monday was Zach's first day back in preschool.  To say he was excited would be an understatement.  He was all smiles in the morning as he came into my room at seven - already dressed and in the process of making his bed.  (He needed a bit of help, as he was concerned with how Daddy had tucked the bottom of his sheet in the night before when changing his sheets.  Of course, he wanted me to fix it.)

I was thrilled that my boy obliged me with a smile when I took his picture.  His only request was that I take a silly picture too.  Once we arrived at school, he excitedly walked in and hung his backpack up on his hook.  Then he told me he needed to use the bathroom, but he wanted me to wait outside because he could do it all by himself.  When I dropped him off at his classroom, his teacher was holding a girl who was clinging to her while also comforting other kids who were crying.  But my boy was so brave.  He gave me a kiss and a hug and then went and sat down in his seat, waiting patiently for class to start.  As I walked away, I was amazed at how much my Zachy-poo has grown up.  (Apparently this name is still permissible sometimes, as he informed me he thought it would be hilarious to introduce himself as Zachy-poo to his classmates.  He said the other kids thought he was pretty funny and laughed and laughed.) My Zach - always the entertainer.

I pray that this year will be a wonderful year of school for Zach - that he will learn to share with his classmates and respond to unkindness with kindness, that he will respect his teacher, and most of all that he will learn more about Jesus and grow in his love for God and His word.  I pray that this will be the year that Zach will place his trust in Jesus as his Savior.

I am much less concerned with his actual classwork, as evidenced by the following story:

On Sunday afternoon we were enjoying family time together in the living room before naps. Mike and I were playing with Wesley while Zach was looking at his new Big Backyard magazine, which had just come in the mail.  As we played, I suddenly looked at Mike in shock as I heard the following come out of the lips of my four year old:  "Animals move in lots of different ways.  Take a look at how they go, go, go!  A kangaroo cannot move its back legs one at a time.  So a kangaroo must hop to get from one place to another.  A kangaroo can hop forward, but not backward."  I immediately asked Mike if he had read the magazine to Zach yet, and he said no.  Apparently my son can read even better than I thought.  Wow!

God has blessed my son with a gift, and it is a joy to watch him delight in reading at such an early age.  I am so very proud of him!  But I pray that he will always know that his gifts come from the Lord.  May his boast always be in his Creator and Savior and never in himself.

The Works of God

As he passed by, he saw a man blind from birth.  And his disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"  Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him."  John 9:1-3

Since Wesley's birth, the verses from John 9 have grown very dear to my heart.  So it was with great anticipation that I awaited the message that our pastor preached yesterday on this passage.  As I listened to his message, I was freshly encouraged and filled with joy in my Savior. Thank you Josh Fenska for so helpfully expositing the word of God and bringing much glory to His name.

I am grateful for the reminder that Wesley's life and disability have a profound and noble purpose in God's plan.  Wesley's suffering is not meaningless or purposeless or punitive.  His life exists to point to the power of God.  And it is already evident that God's power is being marvelously displayed through Wesley's suffering and through our suffering as a family as God powerfully sustains us.

More than that, I rejoice that with the blind man I can say, "I don't know everything.  I don't know why God created Wesley with a disability.  But I do know that Jesus has changed and redeemed my life!"  I loved our pastor's reminder that while Jesus powerfully displayed the works of God by healing the blind man, the greatest gift the man received that day was not his eyesight.  He received a gift far greater than the gift of sight for the remainder of his years on earth.  When he believed in Jesus, he received the right to know God as his loving heavenly Father.  He received the precious gift of eternal life with Jesus, his Savior.

These precious gifts are mine too, and they will be Wesley's as well, if he believes in Jesus as his Savior.  Even if Wesley's suffering continues until the day that he dies, these gifts are ours for us to cherish and hold dear.  Nothing greater could ever be given to us.

So now I join with the healed man as "he said, "Lord, I believe," and he worshiped him."

Learning

Today I decided to teach Zach how to tell time on an analog clock.  He has been telling time with a digital clock since he was two, and he loves math, so I expected him to pick it up quickly.  But I wasn't ready for him to get it right away.  I assumed we would start learning today and continue to practice over the weeks to come.  First I started by showing him how to count by fives (at the recommendation of one of my amazing babysitters!)  Once I had counted to twenty, he finished counting to one hundred by himself.  He did it two more times and then we moved on to a clock.  He already knew that an hour has sixty minutes and that the short hand tells what hour it is.  So, after counting around the clock by fives one time, he was off and running.  He correctly told me every time that I showed him.  After ten minutes of instruction and practice, my son can now tell time.

As I put Zach down to bed for his nap, it was hard to not get teary eyed as I thought of how easy learning comes to my big boy.  Over the summer his reading has improved by leaps and bounds, and this is with minimal assistance from me.  It seems that every time he hears something, his mind soaks it in and it instantly becomes part of his vast array of knowledge.

It was difficult for me to watch Zach succeed with such little effort after working for months with Wesley before seeing success even in small milestones that are building together to reach larger goals.  I am so very proud of my oldest son, and God has blessed him with an amazing mind far surpassing that of his Mama.  I love him with all my heart, and his joy in learning is contagious.  Most of the time I can't help but rejoice with him.  But today I wasn't ready for his success.  Today it was a stab to my heart as I thought of his precious younger brother.  

God has perfectly and beautifully made both of my sons, but at least when it comes to learning, they were created on opposite ends of the spectrum.  Somehow it is my job as a mother to both rejoice in and encourage Zach as he bounds from milestone to milestone while also not grieving or losing heart as I watch Wesley struggle and work so hard for each step he takes forward.  God has a perfect plan for the lives of each of my boys, and while those plans may be different, they are both good - to give them a future and a hope.

"For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope."  Jeremiah 29:11

100th Post

I started blogging at the recommendation of a wise woman at my church.  After sharing my struggles with her soon after Wesley's birth, she encouraged me to write down all that the Lord was teaching me so that I would not forget.  She wisely counseled me that I would one day want to look back on the difficult season I was walking through and be encouraged as I recalled God's faithfulness and grace that He was so abundantly pouring out on my life and on our family.

At first I resisted her counsel, since writing has never been something that has come easily to me.  But when I realized that I was already starting to forget things the Lord was showing me, I decided to start this blog.  I must confess I am surprised that despite my busyness and previous struggles with articulating my thoughts on paper, I have managed to maintain this blog for about a year now.  Already I am encouraged and filled anew with joy as I look back at previous posts and am reminded of God's kindness and love toward our family.

Thank you to all my readers for walking alongside me as I learn what it means to trust God and to see His steadfast love toward our family.  I pray that you too have been encouraged and that your faith has been built up when reading this blog.

"But I have trusted in your steadfast love; my heart shall rejoice in your salvation.  I will sing to the Lord because he has dealt bountifully with me."  Psalm 13:5-6

Vacation: Day 6

Vacation: Day 5

Vacation: Day 4

Celebrating our anniversary - 8 years!

Vacation: Day 3

Vacation: Day 2

Vacation: Day 1

My Snugglebug

Zach was never much for cuddling.  Only on rare occasions would he let me hold him and hug him, and this usually only occurred when he was pretty sick.  Then Wesley, our little wiggle worm came along.  His desire to constantly be on the move (he started rolling over at two months old and from then on never stopped) combined with his severe reflux left him with little interest in resting on Mama's shoulder - until recently.

The past few months I have been trying to soak up every moment that I can with my little snugglebug.  Wesley regularly walks up to me, wraps his arms around me, and either lays his head down on my shoulder or rests his cheek on mine.  His hugs don't last long, but they come quite frequently throughout the day.  Whenever he is hugging me and I ask him for a kiss, he tries to pucker his little lips and leans in for me to kiss him.  Each kiss is such a precious moment that I want to savor forever.

Our most treasured moments are when Wesley wakes up from his nap just wanting to be held. He wraps his right arm around my neck, weaving his fingers through my hair, pops his left thumb into his mouth, and lays his head on my shoulder.  Often this only lasts for a few minutes, but sometimes we enjoy a glorious half an hour walking through the house together. What a delight it is to hold my precious little boy in my arms and whisper "I love you" in his ear.

It's times like these when I wish he could be my little boy forever.

Thirty Years of God's Grace

For my thirtieth birthday, my wonderful husband invited some of our dear friends over to celebrate with us.  Then he surprised me by setting aside time for people to share words of encouragement with me and areas where they see evidence of God's grace in my life.  As many of my friends shared, tears filled my eyes as they reminded me of the many ways that God has been at work in my life and over the past two years in particular.

As they shared, the following verses kept coming to mind:

"For you did not receive the spirit of slavery to fall back into fear, but you have received the Spirit of adoption as sons, by whom we cry, "Abba!  Father!"  The Spirit himself bears witness with our spirit that we are children of God, and if children, then heirs - heirs of God and fellow heirs with Christ, provided we suffer with him in order that we may also be glorified with him." Romans 8:15-17

Because I have trusted in Jesus as my Savior, all I have ever known, and all I will ever know, is grace.  There is no reason for me to fear, for my greatest need has been met.  Because of Jesus' death on the cross to pay for my sins, I will never receive condemnation from God. Instead, He has made me his child - a fellow heir with Christ!  And one day, I will be glorified with Jesus and spend eternity in the presence of my risen Savior.

Reflections on Feeding

When I look at my chubby little boy who tips the scales at a whopping 29 pounds, I am brought to my knees as I thank God for the work He has done in Wesley's body and the wisdom He has given to us as parents and to Wesley's doctors over the past two years.

How can my hefty little boy be the same boy who was failing to thrive for the first month of his life?  How can my Wesley who guzzles down his entire drink in less than a minute be the same kid whose suck was so weak he couldn't even nurse and it took him 40 minutes to drink two ounces from a bottle?  Can it really be that my little boy whose severe reflux caused him spit up so much of what he ate for the first year of his life is now keeping EVERYTHING down?  God has truly worked a miracle in Wesley's life.

Reflecting back on the first six months of Wesley's life brings tears to my eyes as I remember how scary those days were.  I remember begging God for wisdom to know how to care for my baby.

Wesley never lost weight because of his difficulty eating and his spitting/throwing up, although I have no idea why.  I remember that he would regularly spit-up up to 20 times between meals.  His clothes, burp cloths and blankets would always be soaked.  After just one spit up, his bib would be completely soaked through, so bibs were worthless.  I remember I always held him facing out so that when he spit up it would splat on the floor rather than covering me.  He also had blood in his stool, which was confirmation to us that something was wrong. He fought eating - screaming and flailing and turning his head as we would hold him in a sitting position against us to keep him upright and do our best to shove a bottle in his mouth. (Since he was never able to nurse, we had to feed him via bottle.  Although, bottle feeding did give us the ability to feed him upright, so for that I am grateful.)

While I am very grateful for the medical profession, and Wesley has benefited significantly from many surgeries and procedures, I also learned through trial and error that the medical profession doesn't know everything, and they don't always get things right.  I found very quickly with Wesley that many doctors are ignorant when it comes to how food affects GI issues.  I even received erroneous information from several GI doctors as we pursued care for Wesley.

So, after much prayer and consideration, I decided to go on an elimination diet when Wesley was 5 months old, eliminating all allergens from my diet along with many other foods that can be difficult to digest.  It was a drastic and very difficult step to take, but Mike and I felt that it was our best option if we were to ever identify what was bothering Wesley and how we could best help him.  My doctors were skeptical, as they had never heard of it before and felt that it was unnecessary, but nothing they were doing was seeming to help.  Since several of my friends had seen radical changes in their kids when they followed this diet, I decided to do it anyway.  After a week or so, the blood in Wesley's stool disappeared, and after 4-5 weeks I began to see a decrease in his spit up.  It was not a huge decrease, but it was there nonetheless.  Over the course of 6 months, I slowly added back in foods until it seemed that dairy was the main culprit for Wesley's reflux.

During this time we also had an upper GI scope done on Wesley to confirm that he had no physical deformities in his esophagus that might be causing his reflux.  They found none, which was both a relief that nothing huge was wrong and a disappointment that doctors still had no idea what was wrong (other than beginning to suspect an allergy/intolerance to protein).

When Wesley was 11 months old, after consulting Wesley's GI doctor and several nutritionists, I decided to wean Wesley to soy formula, because the protein in breast milk is similar to the protein in cow's milk, and Wesley's GI told me that it seemed that Wesley was allergic to the protein.  Sure enough, within a week of weaning him, his spit up decreased substantially.  He still spit up a lot, but not massive quantities all day long.  I still wonder if a weak esophageal sphincter had a lot to do with his continued spit up.  Then when Wesley was 18 months old or so, I switched from soy milk to a mix of soy and rice milk. Once he was getting more rice and less soy, his spit up almost disappeared (because the protein in soy milk is also similar to that of dairy).  Of course, this left us with concerns about fat intake until we were introduced to coconut milk a few months ago.  It has been a lifesaver!  Wesley now gets the fat he needs and very rarely spits up as long as he is on Prevacid.

As I look at how God has transformed my little boy, I am reminded of Colossians 1:16-18, which says that God created all things and in Him all things hold together.  That includes Wesley.  Even when it felt like I had no idea what to do and everything was spiraling downward with no answers, God was faithful uphold Wesley, the precious boy he had created.

And as Mike and I begged God for wisdom and clung to the promise in James 1 that God generously gives wisdom to those who lack it and ask Him in faith, God was faithful to answer His promise.  God DID give us the wisdom that we needed to care for our son.  And He did this both because He loves us and because He loves Wesley even more than we do.

Reflecting on the changes in Wesley's body and gut over the past two years, it is clear to me that the work God has done in him is nothing short of miraculous.  I have been reminded time and time again over the past two years that I am not in control of Wesley's life.  There is nothing that I can do to hold his life together.  But God, in his lovingkindness and mercy, has not only upheld Wesley's life, but laid His hand of healing on Wesley's gut, enabling him to thrive and grow strong.

"Bless the Lord, O my soul, and all that is within me, bless his holy name!  Bless the Lord, O my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases, who redeems your life from the pit, who crowns you with steadfast love and mercy, who satisfies you with good so that your youth is renewed like the eagle's." Psalm 103:1-5

Accomplishments & Successes

Since baby books are not made for children like Wesley, I often find myself struggling as I try to update his.  As a result, this post is my way of documenting Wesley's more recent accomplishments and successes, since my memory is proving to be less and less reliable these days.

Wesley playing with his OT

Expressive Speech:

• Wesley currently uses the following signs:  please/help (he signs "please" for help as well), open, all done, play, ball
• The following words are often in his vocabulary (words still seem to come and go randomly for him):  dada, run, more ("m"), in, on, up, down, go, car, mama (although we are still unsure if this is purposeful or not).  He also recently imitated "tato" for potato and "boy" and has started to surprise us as he has sought to randomly imitate different words we say.
• He still struggles a lot with motor planning but is starting to play noise imitation games with us successfully, where we go back and forth imitating things like "ssss", "gagaga", "bababa", "dadada", "t", "mamama", etc...
• Wesley DESPERATELY wants to communicate with us.  He has the whole picture card thing down pat, regularly going over to his picture card board and examining his cards until he identifies which thing he wants most to do.  Then he brings us that card and signs please.

Receptive Speech:

• He responds to commands such as "sit down", "come to Mama", "no hit", "no lick", "no touch glasses", "give to Mama" and "stop".
• He understands phrases such as "let's go outside", "it's time to eat", "it's time to take a bath", "does Wesley want to play in the water?", "does Wesley want milk?" and comes running when he hears them.
• He is learning body parts very slowly but currently knows where our ears and nose are.  He often finds his tummy and toes as well, and loves to touch his "eyes" (really it's just an opportunity to put finger prints all over his glasses).

Developmental skills:

• This week Wesley started sorting!  He has counting bears in two different colors and we realized a few nights ago that he was sorting them by color, putting only the light brown ones into the bucket.  Mike tried dropping dark brown bears into the bucket when Wesley wasn't looking, but he noticed and pulled them out every time.  Then when Wesley's DT came yesterday, she had Wesley sort shapes by color on a stacker.  He matched the shapes to the similarly colored post every time except for once.  He has also started carefully looking at all of his options before making a choice rather than doing things without looking.
• Wesley also has started to correctly identify where puzzle pieces go.  He is unable to manipulate puzzle pieces to get them to go into the correct spot, but he often sets them down in the right place before we help him to shift the puzzle pieces to fit them in.
• Up until recently, he hated stacking blocks. (We think this had a lot more to do with hating to sit still and concentrate on anything.)  Now he is able to stack up to five blocks with minor assistance.  He puts the block on top, but we assist in keeping the rest of the tower from falling over in the meantime.
• He sits and listens to whole books (VERY short ones) before getting up and walking away.
• He has learned that my diaper bag always has snacks in it and insists on having it opened right away when he finds it in the basket of the stroller.
• Wesley imitated his therapist while playing the other day, watching her walk the Little People boy up to the top of the house and then doing the same.  It is exciting to watch this play skill emerge.
• Blanket time is improving slowly but surely.  I still need to stay on the couch next to the blanket for the full fifteen minutes, but Wesley now understands that he needs to stay on the blanket and play until the timer goes off.  He doesn't WANT to stay, but he UNDERSTANDS my instruction.  My goal is for this to be something that Wesley consistently does without crying or getting off the blanket by the time the baby is born so that I can nurse the baby or deal with a blow-out without worrying about where Wesley is or what he is getting into.

Sensory:

• Wesley willingly crawls through a tunnel (he's been doing this for a little while now). He is also learning how to crawl under small tables and over cushions in obstacle courses without crying, as a way of helping him with his sensory aversions.
• He now enjoys bouncing on an exercise ball and lying inverted on the ball, whereas before this was a very unpleasant experience for him.
• He is still unable to operate a ride-on toy, but is now willing to sit on one calmly while playing with another activity.  This is a huge step for him, as mentioned in this post.

Fine motor skills:

• Wesley's love of gears has helped him significantly with his fine motor skills and graded movements.  If we set up some gears for him, he loves to turn the crank using his pincer grasp and watch the gears move.  As the video above shows, playing with gears gives Wesley plenty of opportunities to practice his expressive language as well.
• He has become much more interested in coloring, loving to both scribble and make dots all over the paper.  Currently he insists on only coloring with the red crayon.  We'll have to work on that.

Gross motor skills:

• Wesley now crawls up the steps and goes down the slide at the park unassisted.  He also walks up the steps holding the rail with minimal assistance.
• He walks up stairs with one hand on the wall with minimal assistance.
• Last week he shocked me when I found him sitting on the couch.  He proceeded to show me over and over that he has now figured out how to get up on the couch by himself.  He's still not interested in sitting there for more than 2 seconds, but we have time to work on that.
• Wesley has figured out how to get into his cube chair all by himself.
• He has mastered climbing up into our Little Tikes cube and then going down the slide all by himself.

Feeding:

• Wesley adds new foods into his diet on a regular basis these days.  Our most recent additions are hamburgers from McDonalds (I know, not very healthy, but his feeding therapist said this would be the best way to introduce him to ground beef without him gagging on it), apples (peeled), and peaches (peeled)
• He now drinks apple juice, both diluted and undiluted, which is a wonderful addition to his preferred beverages - coconut and soy milk.
• We are working on assisted self-feeding, which he is very interested in.  He is currently unable to get food on his fork, but once we help him, he is able to direct his fork to his mouth and eat his food.  Spoons are harder!  We are still doing hand over hand for the entire meal when he eats things like oatmeal and yogurt.
• Wesley is also doing a great job at transitioning from mixing his entire meal into one bowl to using a sectioned bowl and going around in a circle eating a bite of each food.  We still struggle when we get to the vegetables. but he gets the concept now that once he's eaten a bite of vegetables, he'll get a bite of what he wants.
• He is doing a spectacular job of drinking out of a straw, so we have basically eliminated sippy cups now!

While we are always striving to help Wesley to make steps forward in all of these areas, it is also a joy to step back and see how far God has brought him.  We rejoice as we see the work that God is doing in our sweet little boy's life.

The Thorn

I stood a mendicant of God before His royal throne,
And begged Him for one priceless gift which I could call my own.
I took the gift from out His hand, but as I would depart I cried,
"But Lord this is a thorn and it has pierced my heart;
This is a strange and hurtful gift which Thou has given me."

He said, "My child, I gift good gifts and gave my best to thee."
I took it home and though at first the cruel thorn hurt sore,
As long years passed, I learned at last to love it more and more.
I learned He never gives a thorn without this added grace,
He takes the thorn to pin aside the veil which hides His face.

Elisabeth Elliott

Treasured Memories

Some weeks are hard.  Last week was one of those.  After enjoying a family reunion over a long weekend where Wesley received none of his normal sensory therapies, it took my poor boy almost a week to recover.  He just ran in circles all day long, unable to stop and concentrate on an activity for even a few seconds.  He seemed frustrated most of each day, impulsively ripping his glasses off, banging his head into walls, and throwing himself on the ground head first.  By the time Friday came, I knew we needed to do something drastic.  So, we implemented sensory therapy bootcamp, cracking down on therapy time each day by going through Wesley's whole sensory routine every hour and a half rather than just several times a day.  We even added extra activities into his therapy routine.  By God's grace, it seems to have helped.  Wesley's concentration and ability to sit still is remarkably better, and he is back to signing and using words for what he wants rather than just impulsively harming himself and his glasses.

After such a rough week last week, it was a joy to be reminded by the Lord that just as some weeks are hard, some days are fantabulously wonderful.  Yesterday was one of those days.  I decided to take the boys to an outdoor living history museum which also included a carousel, pony rides, and a miniature train.  To understand how amazing yesterday was, it must first be explained that due to his vestibular and sensory issues, Wesley HATES to sit on moving things such as ride-on toys and carousel rides.  He feels off-balance and unstable and cries while fighting to get off of them as fast as possible.

As a result, I fully expected Zach to ride the carousel and ponies by himself yesterday while Wesley watched from his stroller.  In fact, I didn't even plan on trying to help Wesley ride anything because of how dreadful his responses have been in the past.  But God had another plan.  As we arrived at the pony ride, I impulsively asked if it would be alright if Wesley rode one if I stayed right next to him.  The workers of course said yes, and I put him on a pony. Much to my surprise, Wesley didn't fight.  He didn't squirm.  I didn't see terror in his eyes.  Instead, he sat very still and wide-eyed and held on to the saddle cautiously while I protectively held him on the pony.  Then we rode the horses on the carousel,.  Again, Wesley held onto the pole, one hand above the other, and sat very still through the entire ride as if he'd been riding on carousels his entire life.  He quietly and calmly looked around as we went around and around, just taking everything in.  I cannot even begin to express how amazed I was.

As I soaked in each moment, there was much rejoicing in my heart.  I experienced the joy of standing next to my son while he enjoyed a carousel ride and walking next to him while he rode his first pony.  There were many times yesterday where tears began to well up in my eyes as I realized what a gift God was giving me.

Then we moved on to the train.  Even after our successes, I was a bit anxious about holding my little wiggle worm in my lap for the entire train ride.  He has never sat still for more than half of a second before.  We climbed into the train and sat down, and Wesley immediately wrapped his cute little chubby arms around me and peacefully rested his head on my chest. He proceeded to sit just like this for the entire train ride! (Except when he turned his head as he looked around at the scenery in awe.)  In fact, he did so well that when Zach requested to ride the train again, I was happy to consent.  Those two train rides were such treasured moments for me, snuggling with my precious little boy and participating in delightful and uninterrupted conversations with my big boy.

When it was time to leave, my joy was overflowing as I thanked God for my boys and for the wonderful time He had given to us.

I will always treasure these memories in my heart.

Three

Boys, that is.

It looks like our house will be loud, rambunctious, and quite wild for the next eighteen years - and I will have my hands full.  But I wouldn't have it any other way.

We are rejoicing today that God has chosen to bless us with another son, and we pray for him, just as we pray for his brothers, that he will grow up to trust in Jesus as his Savior and love the Lord his God with all of his heart.

The Greater Thing

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things.

We as parents want only the best for our children.  We pray and ask God to protect them from all harm, to keep them from sickness, to heal them from their illnesses, and to provide abundantly for all of their needs throughout their lives.  But what happens when children are born with a disability?  What happens when God chooses not to heal them?  How do we respond when God does not give us the prosperity we asked for?  What is our heart's response when God's mighty hand seems to weigh heavily on our lives rather than easing our suffering?

Cause what if Your blessings come through raindrops?
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near?
What if trials of this life
Are Your mercies in disguise?

It is often easy for us to confuse God's gifts, giving Him greater glory for the gifts that we can see, rather than for His gifts to us that are eternal.  I recently read an article by John Knight about Jesus' healing of the paralytic man in Mark 2:1-12.  In this passage, this man's friends go to great measures to make sure this man is brought before Jesus.  Then, Jesus does the greatest thing ever - He forgives this man's sins.  This man now has a right standing before the perfect judge of his soul, and he has the assurance of increasing measures of joy in heaven with Jesus for all eternity.  Yet, instead of praising God, the crowd accuses Jesus.  In fact, they do not glorify God until AFTER Jesus heals the man's paralysis.

John Knight helpfully reminds us that while Jesus' healing of the paralytic was tremendous, it lasted only a short while.  This man has been dead for many years now.  Jesus' greatest gift to this man was the gift of forgiveness.  As I read this, I was left with the question, "What do I rejoice in?"  Do I wait to praise God until He has answered my prayers for lesser things, or do I glorify Him for His greatest gift of all - salvation for all who believe.

We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
And all the while You hear each desperate plea
And long that we'd have faith to believe.

God may or may not ever heal my son.  Despite the fact that Wesley may never be given this "lesser thing", I can rest assured that God HAS loved Wesley, and all of us, so much that He has given us the greatest thing.  He has shown His love for us by sending His Son to be the perfect sacrifice and triumph over sin.  This means that our sins can be forgiven and we can spend eternity with Jesus.  Being with Jesus forever is far better than than being healed of an earthly disability for several decades.  It is far better than protection and prosperity and a lack of suffering in this life.

When friends betray us, when darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home.

I am so very thankful that God has used the trials of this life to change my perspective - to give me a longing for heaven, where all things will be made right and where I will see my Savior face to face.  It is there that Jesus will wipe away every tear from my eyes.  There will be no more death or mourning or crying or pain, for the things of this life will have passed away and all things will be made new.  Wesley will be made new.

Thank you Lord that this is not my home.  I am passing through this earth for only a short time on my way to a perfect eternity with Jesus.

May we always rejoice that just as with the paralytic, Jesus has given us the greater thing.

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst
This world can’t satisfy?
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise?

* lyrics are from "Blessings" by Laura Story

4th of July Weekend

Playing in the pool at Great-Grandma and Great-Grandpa's house

Wesley loves Great-Grandpa's pond.  Later in the weekend he got too close and fell in.

Wesley's PT would be proud - Wesley launched the rocket over and over again all by himself.

Is there anything more fun for a four year old than squirting all the adults at the family reunion with a water gun?

Wesley enjoyed the parade this year.  Every time a car or truck or float would go by, he yelled "CAR!"

Wesley and Mommy

My family came up to visit for the weekend.  The boys loved seeing Grandma and Grandpa again.

Chasing bubbles before the fireworks

Look at all these bubbles!

Assistive Technology

Over the past year, I have thanked the Lord countless times for the equipment Early Intervention has given Wesley and the therapy tools his therapists have graciously loaned us. Where would we be today without his SPIO vest, orthotics, wrist and ankle weights, weighted vest, brushes, Rifton high chair, shopping cart with weighted groceries, exercise ball, wooden cube chair and table, and the countless other toys his therapists have loaned us?  God has used these things to work in a mighty way in our little boy's life.  We have seen so many changes in his behavior, attention span, and ability to communicate and interact with the world as this equipment has been introduced into his life.

You can only imagine my excitement when we finally received Wesley's assistive technology equipment last month.  He received a touch screen for our computer, touch screen software that is developmentally appropriate for him, Boardmaker Plus software (which I use to make communication picture cards for him), and a picture board on which to attach the picture cards.

Over the past six months, therapy has grown more and more difficult as he has expressed his dislike of certain activities by screaming, throwing himself on the floor, and hitting me.  We have been working on first/then concepts with him verbally, but he struggled to make the connection.  Since receiving the new software, it seems that part of our problem was that we have a visual learner on our hands.  The new picture cards have revolutionized therapy in our home.  I am now able to select a non-preferred activity to be followed by a preferred activity and explain to Wesley with picture cards what we will be doing.  He is so much more willing to cooperate with non-preferred activities when he knows that a preferred activity is coming next.  He even runs over and sits in his special therapy spot in front of the couch to wait for the activities as we get them ready.  He pulls the picture cards we present to him off of his chart and carefully examines them to see exactly what they are before putting them back and beginning his activities.

Since starting to use the picture cards, we have seen Wesley's number of preferred activities increase as he has willingly tried activities (such as stacking blocks and reading books) enough times to find that they actually are fun!  His attention span also seems to be increasing, as he is willing to participate in an activity for longer, knowing that when it is done he will get to do something he likes.

This has also helped us as we work on verbal communication with Wesley.  It seems that knowing his hard work will soon be over helps him to press through and try to to talk.  Our poor boy still has such a hard time with motor planning.  To say the "m" sound, he first presses his lips together.  Then he puts his hands over his mouth to feel his lips and make sure they are really closed.  Sometimes these steps occur several times before he is able to verbalize an "m". But since helping Wesley to understand the structure of therapy, his "m" has started to come sooner and he has also added the "g" sound to his vocabulary.  Last week for the first time, he started saying "go!"  Now, whenever we say "Ready, Set....", he yells out an enthusiastic "Go!" Sometimes his "go" sounds more like "do" or even "in", but he's trying and we are so very proud of him.

Helping Wesley to understand the structure of therapy and the other routines in his life has helped him tremendously, which has also given this tired mama the continued strength to persevere in our therapy routine and trust that God is working through it to help our precious boy.

Sorrowful Yet Rejoicing

Though I walk in the midst of trouble, you preserve my life; you stretch out your hand against the wrath of my enemies, and your right hand delivers me. The Lord will fulfill his purpose for me; your steadfast love, O Lord, endures forever. Do not forsake the work of your hands.  Psalm 138:7-8

Somehow today sneaked up on me like a burglar in the night, ready to steal my joy and leave sorrow in it's place.  In the past, I have actively prepared my heart for days like today and asked my friends to pray for me throughout the day.  Today was different.  The busyness of life overtook me, not allowing me even a moment to think about what was to come.  But despite my unpreparedness, God was faithful to walk beside me as I faced my day and fill me with His peace that surpassed all understanding.  Despite the difficulties of today, God gave me the grace to see that all those involved care deeply for me and my son and want the very best for him.  More importantly, God was kind to remind me of His steadfast love for Wesley and His perfect plan for Wesley's life.

Today was Wesley's annual IFSP meeting with Early Intervention.  As a mother, this is the day when I am faced with how vast my son's delays seem when they are written out on paper.  I cannot even begin to express how heart breaking it is to read evaluation after evaluation and see numbers like 50% delay alongside age equivalent calculations.  The areas in need of growth seem eternally long in comparison to the lists of accomplishments and successes.  And then it hits me again that this is my boy, my baby, my most precious child, who is being discussed and written about.

Oh how I long for the day when Wesley will meet His Savior face to face, and the evaluation of him in God's book will be - "Created in My image, saved by My Son, loved forever, given a new and perfect body with which to worship Me forever in fullness of joy".

As I wait for that day, I am grateful to be reminded of Philippians 4:8, which says "Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things."

So today I will fight to believe what is true and lovely.  God has blessed us with a wonderful son, and Wesley will meet all the milestones that God has ordained for him in God's perfect timing for his life.  God will fulfill His purpose for Wesley.  He will not forsake Wesley, the precious work of His hands.

Last Year's Photo Book - Finally!

Every year it gets harder and harder to find the time to make our annual photo album. This year only an offer for a free Shutterfly photo book if I finished by the end of June was enough of a push to help me finally complete last year's photo album! I can only imagine what a hopeless endeavor this year's photo book will be if I wait to start until next January.

Update: For those of you reading this post via RSS or email, you will need to click on my blog to view the photo book.

Big Brothers

All Must Mean All

"All the paths of the Lord are loving and faithful." Psalm 25:10

All does not mean "all - except the paths I am walking in now," or "nearly all - except this especially difficult and painful path."  All must mean all.

So, your path with its unexplained sorrow or turmoil, and mine with its sharp flints and briers - and both our paths, with their unexplained perplexity, their sheer mystery - they are His paths, on which He will show Himself loving and faithful. Nothing else; nothing less.

Amy Carmichael, You Are My Hiding Place, p. 98

McDonald's

Most parents would prefer that their children not eat at McDonald's (or any other fast food restaurant, for that matter).  I, on the other hand, cannot begin to tell you how OVERJOYED I was that Wesley actually ate lunch with us at McDonald's on Monday.  Due to a confluence of events, we left our house early that morning and didn't get home until nap time.  As I had not been expecting to do this, I did not plan ahead like I usually do and pack a lunch for Wesley that he would both be willing and able to eat.

As we pulled into the McDonald's parking lot for lunch, Zach and I took a minute to pray for God's mercy, that He would help Wesley to accept the food I offered him and not fight me with every bite.  Then we went in, with me thinking that if Wesley ate one or two bites of chicken nugget and one or two fries, I would count our lunch trip as a success.

Much to my surprise, Wesley INHALED his lunch!  The most amazing part of lunch was that Wesley accepted his food immediately when I offered it to him, whereas normally the first bite or two of something new is a huge fight.  And not only did he accept it, he WANTED it.  He dove for each bite of chicken nugget as I offered it to him, and he stuffed the fries into his mouth like they were candy (or in his case, goldfish, since he dislikes all things sweet).  I am sure Wesley would have eaten more, but I only offered him two chicken nuggets, as they took a lot of work for him to chew, and Zach and I were long done with our lunches by the time Wesley finished his.

As we left the restaurant, I walked out in amazement at God's provision for our family.  He could have let Wesley do his usual fighting, and he wouldn't have starved.  Wesley would have been hungry, but he would have been fine.  Instead, God chose to answer our prayers in a powerful and marvelous way.  He reminded me that nothing is too small to bring to His throne of grace.  He loves Wesley, and He cares for every tiny detail of Wesley's life.

Phoebe Has A Family!!!

 

Yes, it's true!  I have been crying tears of joy all morning.  Yesterday afternoon I went to the Reece's Rainbow website to look at Phoebe's sweet picture, and much to my surprise, I found a bio of the family who has committed to adopting her.

I cannot stop rejoicing in the Lord's kindness to Phoebe.  He has given her a family!

Just look at these lovely pictures of sweet Phoebe.  Soon this precious little girl will have a mommy and daddy to hold her and love her!  Please continue to pray for Phoebe and her new family, as they walk through the long process of adopting her.