Thoughtless Words

So often we speak words thoughtlessly without considering how our words might hurt others. In honor of Spread The Word To End The Word Day, let's think before we speak.  Using the word "retard(ed)" is a derogatory way to use someone's disability as an insult, whether we are speaking directly to them or not.

When I hear this word, I hear "That was so Wesley!"  Or, "I can't believe I just did that, I'm such a Wesley!"  Out of respect for my boy, please find another word.

The tongue is a mighty weapon.  According to Proverbs 18:21, "Death and life are in the power of the tongue, and those who love it will eat its fruits."  Today, with God's help, let's choose to give life with our words.

More Spaghetti and Meatballs, Please!

I remember back when Wesley first received his SPIO vest, which provides compression through his trunk.  With the stabilization it provided, Wesley spoke his first word, learned his first sign, and started walking consistently within the first week of putting it on.

This week has provided similar excitement around our house.  Wesley's OT brought one-pound ankle weights to his therapy session last Wednesday.  She explained that wearing them for 20 minutes at a time every two hours would provide proprioceptive input that would assist in organizing his brain, helping him to be more aware of his body, stabilizing him, and calming him.  At first I was skeptical, as this seemed too good to be true. But truthfully, we have been AMAZED at how much these weights have helped our sweet little boy.

Within several hours of having the weights on for the first time, Wesley sat down and worked at a three piece puzzle until he put all three pieces in.  He has never even been interested in a puzzle before, much less able to correctly place puzzle pieces.  He also rapidly stacked a set of ten stacking cups his developmental therapist brought that he had never seen before, and he attentively worked at putting plastic coins into a small slot.

We have been working for months on helping Wesley to sign "please" whenever he needs help instead of screaming or throwing himself on the floor.  On Wednesday night, as Wesley was yelling again, I dutifully went through the process of saying "Does Wesley need help?  Say help, please!" while signing "please".  To my complete and utter shock, Wesley broke out in a huge smile and signed "please".  It was a beautiful moment, as Mike was home and able to see Wesley's sign too.  We cheered and cheered for Wesley as he beamed with delight.  Even more impressively, Wesley has continued to sign "please" when we prompt him, and this has been without the loss of other words or signs.

Wesley has also started imitating our hand motions.  He now shakes his fingers with us as we sing Five Little Monkeys Jumping on the Bed, lifts his arms up in the air as we sing The Itsy Bitsy Spider, and tries to copy us as we gesture while talking to him.  While we would love to see him try to imitate our voices and words, we know that beginning to imitate our hand motions is a huge first step.

On Wednesday night for dinner I served a family favorite - Creamy Herb Tomato Pasta with chicken.  I decided to offer our dinner to Wesley, and he willingly ate several bites before refusing more. While this was not a complete success, Wesley's refusal was not as adamant as usual, which gave us new hope.  So on Saturday night I prepared spaghetti and meatballs, praying that this would be the night that Wesley would join us in eating our dinner.  To be honest, while I was hopeful, my expectations were low.  I fully expected him to take a few bites and then refuse more, just as he had on Wednesday.  Instead, Wesley GOBBLED up his dinner!  I couldn't feed him his meatballs and pasta fast enough.  He didn't seem fazed in the least by the fact that these textures and tastes were quite a bit different from his usual Spaghetti-O's.  And once he had finished all of his very well-done pasta, he continued eating more of Daddy's, again seeming to not notice the difference in texture that would usually bother him so much.

This marked the first night in almost two years that I made one dinner and we ALL ate it!

So today I'm sitting here lifting my jaw back up off the floor and thanking God for the work that He's doing in Wesley's life.  It is amazing to me that God could use two one-pound weights to make such a difference in our little guy.

"Oh, magnify the Lord with me, let us exalt his name together!"  Psalm 34:3

Griefs and Sorrows

I'm normally not a big fan of posting links, as I assume that most people have very little extra time to go read recommended articles or blog posts.  This week, though, I came across two posts that articulated very well some of the thoughts and feelings I have had over the past two years.  If you have a few extra moments, take the time to read them.  They are a wonderful picture into the thoughts of people who are suffering and how to walk alongside them.

When I first read Tricia's post, I wept.  Her sorrows and griefs are much different than mine, but she has a gift with words and has expressed beautifully what it means to weep and have sorrow, but yet, by God's grace, not be overcome.

As she stated so beautifully, I too weep for Wesley, for what has been taken, for what he doesn't yet know that he doesn't have.  I too hate the unwelcome anxiety, the deep sadness and the swallowing grief.  I too have felt every shade of sadness, but have not felt angry.  I have wished, with all my heart, for Wesley to be made whole, but I have never questioned God's sovereignty - or His goodness.  I grieve the injustice of the loss of the life he could have lived, but I do not believe God to be unjust or unfair.  At first it seemed unfathomable for me to get through each day, week, and month, much less the rest of my life (and Wesley's life). But, as Tricia says, by God's grace I have and I will continue to do so.  This is His gift to me.  By God's grace I am not overcome!

As a perfect follow-up, Molly Piper (John Piper's daughter-in-law) wrote an excellent post on what it looks like to walk with someone through the trenches of grief and suffering.  She encourages us, when we want to say "I can't imagine", to instead just try.  Take the time to imagine what it would be like if your child had a disability (or any other tragedy or heartbreak) - what it would be like to care for them and provide for their additional needs; the sorrows of watching them not develop at a "normal" rate; the grief as they are rejected by their peers; the anxieties as you look into the future 20 or 30 years down the road.  No, you won't imagine perfectly.  We can never imagine the full extent of someone else's grief.  But taking the time to imagine helps us to enter into the suffering of others and weep with those who weep.

From my own experience, those who have truly taken the time to imagine our sorrows have also been those who have most compassionately and graciously and lovingly walked through the past two years with our family.

New Blog Design

I will be the first to admit that my computer skills are way behind the twenty-first century.  How I took computer programming classes in college and yet manage to get lost reading the html code on Blogger is beyond me.  Thankfully, my friend Sandra at The Sensible Mom.com came to my aid.  When she offered to redesign my blog for me, I jumped at the chance.  It has been a joy to work with her, and I am so thankful for her kindness in sharing her gifts and talents with me!  To top it all off, I am delighted with the final design!

Sandra is starting her own business designing blogs, and on March 14th she will be hosting a Blogger blog design giveaway on her website to announce the grand opening of her company.  For anyone considering a redesign of their blog, I would definitely recommend considering Sandra.  And for those of you with WordPress blogs, she is planning to start accepting orders for those in April.

Brushing and Spinning

Brushing and Spinning - also known as the tools God is using to teach Mommy that her time is not her own but the Lord's to use as He sees fit.

Early on we noticed that Wesley had an obsession with licking things.  At first we wrote it off as the usual way that babies interact with and explore their surroundings.  As time went by though, instead of seeing a decrease in licking as one would expect, Wesley's need to interact with the world with his tongue only seemed to grow.  We did our best to limit his licking of the floor, the carpet, the pedals on the piano, and other large inanimate objects, seeking instead to direct his licking to small toys he could hold in his hands.

Another thing we noticed very quickly with Wesley was his constant need for motion.  At 2 months old, he started rolling over.  From that point on, he has never stopped moving.  His determination to always be on the move has benefited him greatly in his development of gross motor skills.  He started army crawling at 7 months, crawling at 11 months, and walking at 15 months.  On the other hand, it has been detrimental to his ability to concentrate and focus on any task for more than a few seconds at a time.  As well, he still struggles significantly with balance because of his unwillingness to work on anything related to stability.  To this day, if we want to spend more than a few minutes at a time working on a task with Wesley, we need to put him in his highchair where he can't take a break and run around the room every minute or so.

Wesley - 11 months old

Spinning objects have always held a fascination for Wesley.  He selects toys to play with largely based on whether or not they have spinning parts on them.  Then he focuses intently on his toys while spinning them with his hands.  Once he is satisfied with the spin of the object, he then sticks out his tongue to experience the tactile sensation.  Since we have removed all of Wesley's toys that spin in an attempt to curb this behavior, his favorite thing to do is grab one of Zach's cars or trucks and either spin the wheels while licking them or turn the entire car upside down and spin it around on Zach's train table while watching it closely.  Wesley also loves to spin himself in circles.  He giggles and laughs as he goes around and around until he's so dizzy that he walks into furniture and walls like a drunken sailor.

In the last few months we have also begun to notice his desire for firm pressure.  He regularly comes to us for big hugs and squeezes.  He likes pressing into tight spaces and sucking his thumb while holding a blankie.  And when he's upset, he throws himself prostrate on the floor or throws his head into the wall or the floor.

We have been concerned about Wesley's sensory issues for a while now, so we are thrilled beyond belief that God has provided us with a new occupational therapist who is particularly experienced with helping children with sensory integration disorders.  Marsha has helped us to understand what is going on with Wesley's vestibular system (which contributes to balance and a sense of spatial orientation), his proprioception (the sense that indicates whether his body is moving with the required effort and indicates where the various parts of his body are located in relation to one another), and his sense of touch/sensory system (how he uses the sense of touch to explore the world).

With Marsha's help, we have created a sensory diet for Wesley, providing him with a schedule of daily activities that will hopefully give him the sensory input his body needs to get into an organized state and stay there.

To provide tactile input for Wesley, we have begun a deep pressure regimen which involves brushing him with a special brush every hour and a half throughout the day.  Our hopes are that this will assist in increasing his sense of touch throughout the rest of body so that he doesn't feel the need to seek sensory stimulation with his tongue.  So far we have seen some improvement in this area, which is helpful in providing us with a reason to keep working with him faithfully.  The brushing is followed immediately by compression of Wesley's joints, which provides proprioceptive input as Wesley's brain seeks to stabilize and protect the joints we are compressing.

Twice a day we are also using a vestibular protocal called "the Astronaut Program", which involves us spinning  Wesley around in a circle ten times in one direction and then ten times in the other.  The goal of this therapy is to help improve his visual processing, motor coordination skills and sense of balance.

In addition, we are providing Wesley with "heavy work" activities, such as pulling cushions and heavy pillows off the couch, climbing over couch cushions on the floor, pushing heavy balls and lifting heavy toys up to put them in buckets.  The resistive proprioceptive input obtained through "heavy work" activities helps to improve attention and body awareness, so we are hoping it will help to calm Wesley and organize his nervous system.

It seems that we must not have been busy enough before, since Marsha has assisted us in filling up our days that we might live each day to the fullest, not squandering even a moment of the precious time God has given us.

I just keep telling myself that if these are the tools that God is going to use to help Wesley with his sensory issues, I ought to rejoice in the opportunity to help my son rather than grumble as I brush and compress the joints of a screaming child who would prefer to do anything in the world other than LIE STILL  for a few minutes.

"For the love of Christ controls us, because we have concluded this: that one has died for all, therefore all have died; and he died for all, that those who live might no longer live for themselves but for him who for their sake died and was raised." 2 Corinthians 5:14-15

My Valentine

With the flu raging through our house this week, our Valentine's Day was not what I would have hoped.  Instead of enjoying special time together, we closely monitored temperatures, held boys in our arms, comforted them, and doled out large quantities of medicine.

Instead of taking me out for a night on the town, my Valentine gave me a precious and beautiful gift.  His gift was a gift of love and sacrifice.  As our romantic plans crumbled, my hubby lovingly offered to stay home with our boys tonight so that I could enjoy his exquisitely planned date, even though he would not be able to share it with me.  So tonight, while my husband lives out true love for me, I will enjoy the Broadway musical Les Miserables with a dear friend.

God truly has blessed me with a husband who loves me as himself.

"I am my beloved's and he is mine....His mouth is most sweet, and he is altogether desirable.  This is my beloved and this is my friend."  Song of Solomon

Fear

Fear is a powerful thing.  If I allow it any room in my mind, it will quickly consume me.  This weekend I was again reminded of how important it is to gear up for battle and fight my fears with the truth from God's word.

On Friday when I picked Zach up from school, he said he was exhausted and he had a low grade fever.  By Saturday morning, his fever was very high, he was achy all over, and he couldn't keep his eyes open.  We took him in to an after hours care facility, where he was diagnosed with the flu.  For two nights we were up all night, giving him medicine every three hours, taking his temperature, holding and comforting him, and praying for God to give him a quick recovery.

During that time, I was amazed at how quickly my mind turned to fearing the worst case scenario.  I felt paralyzed by the irrational fears that Zach would keep getting worse until he died.  Then my mind would move on to fears that Zach might survive, but Wesley would surely get the flu too and it would be too much for his little body to handle.  I would try to pray, but Zach and Wesley's impending doom felt much more real than the promises of God.

Yesterday my husband kindly told me that he would be happy to stay home with Zach so I could go to church.  During the service, someone read from Isaiah 43:1-3, which says:

"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.'"

As these verses were read, it was as if the Lord was whispering to me, "Fear not, Elisabeth.  You are mine.  Even as you are walking through the waters of having a sick child, I am with you.  The future is unknown to you, but no matter what happens, it shall not overwhelm you, for I am with you.  I, your Savior, have redeemed you and provided for your greatest need by saving you from your sin.  Now you can trust that I will walk with you through this and protect you so that the flame does not consume you."

Then at the end of his sermon, our pastor reminded us that lots of things are uncertain, which tempts us to fear and worry.  But Jesus is still bigger than all of these uncertainties.  He has done something certain for us.  He has taken away all of our sins.  When we walk through trials, often all that we pray for is the removal of the trial.  But there is a reality much greater - the removal of the wrath of God.  Because of Jesus, God's wrath has passed over me.

This was such an eye opener for me.  I am walking through much greater trials right now than just the sickness of one of my children.  Because I know that these trials will not be removed from my life, I do not pray and beg the Lord to remove them. Instead, I pray regularly for the Lord to use them to conform me to His image and to bring Himself much glory through them.  I pray that God will help me to trust Him completely and to believe His promises that He is sovereign over all of my circumstances, that He is good, and that His plan for my life and for Wesley's life is perfect.  But then when I face a small trial, instead of praying for the Lord to help me to trust Him and believe that He loves my children even more than I do, I am overwhelmed by fear.  I beg the Lord to remove the trial, but I am not asking in faith.  My request is motivated solely by an all-encompassing fear.

So today I am gearing up for battle.  My circumstances have not changed.  Zach is still a very sick little boy, and it is unlikely that Wesley will make it through unscathed.  But today I will take hold of the truths from God's word and wield them in the fight against fear.  I will ask God to help me believe His promises.  And, as Charles Spurgeon said when addressing suffering, "I will kiss the wave that strikes me against the Rock of Ages."

"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand."  Isaiah 41:10

"I lift up my eyes to the hills.  From where does my help come?  My help comes from the Lord, who made heaven and earth.  He will not let your foot be moved; he who keeps you will not slumber.  Behold, he who keeps Israel will neither slumber nor sleep.  The Lord is your keeper; the Lord is your shade on your right hand.  The sun shall not strike you by day, nor the moon by night.  The Lord will keep you from all evil; he will keep your life.  The Lord will keep your going out and your coming in from this time forth and forevermore."  Psalm 121:1-8

Generous Giving

Since Wesley's birth, God has opened our eyes to the plight of orphans with disabilities around the world.  The suffering and rejection they experience because of their disabilities should not only break the hearts of all Christians, but should stir in our hearts a call to action.  These children truly are the least of these.  

Over the course of the past six months, God has been slowly chipping away at our hearts, showing us that now that He has opened our eyes to these children and their dire plight, it is not OK for us to sit silently and watch as they live out their life sentence.

Mike and I are praying that the Lord would clearly guide us as to whether He will lead us to one day adopt a child with special needs.  But as we wait and prepare to follow his leading, whatever that may be, we also want to follow God's call on our lives by using our money for His purposes.

Our church has been going through a series on generous living, and a few weeks ago our pastor preached from Luke 12:13-21, which is the parable of the rich fool.  The last verse in this passage struck my heart to the core:  "So is the one who stores up treasure for himself and is not rich toward God."

Only a fool believes that his possessions and money are all owned exclusively by him to be enjoyed exclusively by him.  Instead of just being concerned with our own enjoyment of our possessions, Mike and I want to be concerned with wisely using the money God has given us to glorify God and to help others.  Since we have trusted in Jesus as our Savior, He has purchased us by His blood.  Therefore we are His, and all that we own is His as well.  God owns us and all of our stuff.  And God's purposes for our money and possessions include being rich toward God by using our money for His purposes.  This includes not only giving to our local church, but also helping the needy.

Only a fool believes that his stuff will keep him secure.  In order to be rich toward God, we must trust in God to provide for all that we need rather than trusting in our possessions.  We must believe that God will be faithful to our family in order to be able to give generously and sacrificially.

Only a fool believes that earthly treasure is all that matters.  If our focus is on storing up earthly treasure, our hearts will be chained to this world.  Then we will tragically miss out on the unique opportunity of storing up treasure that will never fail for all eternity.

Mike and I left this message praying that God will give us wisdom as we seek to take hold of the unique opportunity of storing up treasure for all eternity.  For, just as the trials that we are walking through are only light and momentary afflictions in light of all eternity, so also any treasure that we store up here on earth is only momentary.  We would much rather be rich toward God.

We covet your prayers as we ask the Lord how we can best give to these orphans in a way that will proclaim the gospel and bring much glory to God.

Yours Forever

"Lord, I give up all my own plans and purposes, all my own desires and hopes, and accept Your will for my life. I give myself, my life, my all utterly to You to be Yours forever. Fill me and seal me with Your Holy Spirit. Use me as You want, send me where You want, work out Your whole will in my life at any cost, now and forever."

- Betty Scott Stam

Food - Ups and Downs

A week after Wesley started eating Spaghetti-O's and other Chef Boyardee canned pastas, he decided that it was time to start refusing all baby food.  The problem with this was that he simply could not live on Chef Boyardee for three meals a day indefinitely.

We prayed that God would help Wesley start eating more table foods, and I prepared fruits and vegetables to bring to his next feeding therapy session.  Unfortunately, that therapy session was a complete disaster.  Wesley refused the steamed and mushy vegetables, the oatmeal, drinking out of an open cup, and even the apple sauce.  Needless to say, I left the therapy session very discouraged.  At subsequent therapy sessions, he also refused small pieces of banana and slices of american cheese.

Thankfully though, that is not the end of the story.  God has graciously answered our prayers for Wesley to start eating again, although not in the way that we had thought best.  Wesley has begun to eat his baby food again.  While it is disappointing to still be feeding him baby food, we are so very thankful that the Lord is continuing to faithfully provide for all of Wesley's needs.  Just as God cares for the birds of the air and the flowers of the field, so He also lovingly cares for Wesley, providing him with all the nutrition that he needs.

Wesley's feeding therapist has been working extra hard to help us introduce new foods to Wesley, but she added to our disappointment by explaining that with Wesley's low tone, difficulty chewing and new gag reflex, it will probably be a long time before he is able to eat fruits and vegetables.  It is much easier for him to eat overcooked or soft pastas and meats that only require one or two chews before swallowing.  Fruits and vegetables, on the other hand, require much more chewing before they are swallowed.  We have also learned that Wesley cannot tolerate foods that are sticky, such as mashed potatoes or hummus.  He has a very high palate, and as soon as his tongue pushes these foods up into his palate, he gags and throws up.

Despite these setbacks, Wesley has started to show an interest in more foods.  He will now eat quesadillas and guacamole.  He also regularly eats slices of thin crust pizza.  He even surprised us this weekend when he ate a slice of hand-tossed Pizza Hut pizza.  In the past he would have spit out the bread as soon as he realized it would require more work to eat, but this time he chewed it!  He also tolerates Cream of Wheat, as long as I mix it with a generous helping of apple sauce or other baby food fruits.  I do have to be careful of this, though, as I often watch his gag reflex start to kick in. On Monday at therapy he ate a few carrots and green beans from a can of minestrone soup (of course he also gagged and threw up when his therapist offered him a kidney bean).  We are praying that this will be the beginning of an introduction of vegetables for him.

Wesley continues to love his Chef Boyardee foods, now eating their Spaghetti-O's & meatballs, ravioli & meatballs, and mac & cheese.  He even permitted a variation when I made Kraft macaroni and cheese with soy milk (gross, I know!).

He seems to prefer salty and savory foods to sweet foods, which means he often refuses graham crackers or animal crackers, knowing that after a while I will give up and give him his veggie straws, pretzels, or goldfish.  He also now eats crackers with peanut butter on them, which have been an excellent source of fat and protein for him.

So despite our setbacks, we have been encouraged overall these past few weeks as we have watched God work in our little boy's life.  We continue to pray that he will accept more foods and more textures, but we rejoice at the strides that he is making.

Words (Plural!)

When Zach was two years old, my grandmother told me I should write down everything he said so that I wouldn't forget.  I remember thinking that it would be impossible to record every new thing that he did or said since at this point he already had a full vocabulary and added new words by the handful each day.  Looking back, it was such a joy to converse with him, but I never rejoiced at new words he spoke the way that I do with Wesley.

So, in keeping with my grandmother's wise words, I want to take a moment to write down and thank the Lord for the new words Wesley has started saying this week.

In the past week, Wesley's speech has exploded.  In addition to the words he was already saying ("all done", "Daddy", and "in"), he is now also saying "up", "down", "on", "off" and "bye".  He also is consistently signing "more", "all done", and "up".  And, he is starting to imitate us more too.  As he poked at my mom's face this weekend, she smiled at him, removed his hand, and jokingly said "enough".  Much to our surprise, he cheerfully looked back at her and said "anuff".

He is also imitating non-verbal sounds when we play games, such as "eee", raspberries, putting his lips together over and over again to make the "p" sound, saying "lalalala", and spitting with his lips closed (which is difficult for him to do with the low tone in his mouth).

The most exciting part of his new explosion of speech is that he seems to be adding words and signs without losing others.  In the past, every time he has added a word or a sign, he has lost all previous words and signs and just used the new ones.  So seeing him add words and signs while continuing to use his other words is a big step for him.  He is still having difficulty with motor planning, sometimes using the wrong sign until we remind him of the correct one, but the fact that he remembers the correct sign as we redirect him is wonderful.

His favorite thing to do is play games where he can use his signs and words over and over again.  He loves it when we turn the lights on and off for him.  As soon as we turn the lights on, he starts yelling "off" until we turn them off.  Then, the moment they turn off, he yells "on" with a big smile.  He could play this game forever.  We also play "up" and "down" with a parachute.  He throws his arms up in the air and says "up". Then, when we lift the parachute up, he throws his arms back down, saying "down".  He laughs and jumps around as we play these games, loving that he has the ability to tell us what he wants and that when he speaks things happen!

Of course, this post wouldn't be complete without sharing the bad news as well.  On Monday we had Wesley's hearing re-checked and it appears that the tube in his left ear is blocked and is starting to fall out.  There is also fluid in his left middle ear again.  So, we have started him on antibiotic drops and then will switch to a hydrogen peroxide solution in a few days in hopes that this will clear up the wax and the fluid.  Please pray that the fluid will drain and that surgery will not be needed to re-insert a tube in his left ear.  We will see Wesley's ENT again in a few weeks to see if the drops and solution helped or not.

Brothers

It would be no exaggeration to say that Wesley worships the ground that Zach walks on.  Wherever Zach goes, Wesley follows. Whatever Zach does, Wesley wants to do.  And whenever Zach invites Wesley to join him in an activity, Wesley is filled with excitement.  As Wesley follows in his brother's footsteps, it's pretty clear that he thinks Zach is the coolest big brother ever!

On the other hand, Zach has not always had this same affection toward his younger brother.  So it has been a joy for me to see recent changes in his heart toward Wesley.  Over the past two weeks I have had multiple opportunities to catch Zach's brotherly love in action.

For Christmas, Wesley's ST gave both boys kazoos (I know, the bane of my existence!), which they have LOVED!  At first Wesley didn't have any interest in them, but over time, as Zach played them with exuberance and joy for days on end, Wesley started to realize that these things really are tons of fun.  So he finally gave them a try.  Of course, he doesn't play the kazoo in the right spot, but thankfully it still works for him.  Now the boys regularly form their own little band, running through the house with Zach leading the way and Wesley following close behind.

Last week we had a free morning, and instead of running errands I decided to have family play/therapy time.  It was such a delight for me to watch as Zach excitedly explained everything to Wesley and cheerfully encouraged him at each step along the way.

Here Zach is helping Wesley sign "more" and say "go" while playing with Wesley's wind-up frog.

Wesley loved watching as Zach wound up his frog over and over and over again.

Then we worked on helping Wesley with his fine motor skills as he practiced putting coins into his piggy bank.  Zach was SO encouraging to his little brother.  He kept switching into his sweet, soft voice that he uses with Wesley and saying things like "good job Wesley" and "keep trying Wesley, you can do it".  In fact, with all of Zach's sweet encouragement, Wesley actually learned how to put the coins into the pig all by himself!  This is a HUGE accomplishment for him, as he still has a lot of difficulty with his fine motor skills and his pincer grasp.  And when he succeeded, Zach cheered and cheered for him!

An extra special moment occurred last Wednesday when I asked Zach to play with Wesley for a few minutes while I cleaned up before Wesley's DT arrived.  Zach got so excited and ran around collecting Wesley's favorite toys.  Then I heard him grab a few of Wesley's picture cards.  So I peeked around the corner to watch as he showed Wesley two picture cards and said, "Wesley, do you want your drum or your ball?  Yay, you picked your ball.  Great job Wesley.  Here you go, here's your ball!"  Then, he grabbed Wesley's Itsy Bitsy Spider picture card and said, "Wesley, do you want your drum or do you want Itsy Bitsy Spider?"  Of course, Wesley picked for Zach to sing to him, and thankfully I had the camera there to catch the song on video.

We learned early on that Wesley disliked cold foods, so ice cream and popsicles were out of the question.  But just last week Mike offered him a popsicle and Wesley loved it!  So this week when I gave Zach the last popsicle after lunch one day and then saw Wesley running toward him with his "I want some of that too" scream, I knew I was in big trouble.  But much to my surprise, instead I saw this:

It is such a joy to watch my boys playing together and loving each other!

Thank you Lord for blessing each of my boys with a brother!

Wesley's Life and God's Glory

After I wrote the post The Things I Can't Do Anything About, I received a question from a reader, asking if I ever feel like God's glory isn't enough to make up for these trials.  Do I ever feel like I would rather have Wesley happy and healthy and whole and not struggling than have God glorified?  Do I ever feel like God has enough glory and he doesn't need more?  God is glorious no matter what happens in our our lives, but Wesley only has this one life to live and why does it have to be so hard for him?  Why would God make a child miserable to bring himself glory?

In answering these questions, I first want to acknowledge that there is no easy, quick answer.  These are hard questions that have to be wrestled with.  In order to consider these questions rightly, I must first believe two things about God.

First, I must believe that God is good and that He is working all things together for my good (and for Wesley's good if he trusts in Him).  According to Romans 8:28, "And we know that for those who love God all things work together for good, for those who are called according to his purpose."  I recently read an excellent quote by R.C. Sproul on this verse that said,

"God, in his providence, has the power and the will to work all things together for good for his people. This does not mean that everything that happens to us is, in itself, good. Really bad things do happen to us. They are only proximately bad; they are never ultimately bad. That is, they are bad only in the short (proximate) term, never in the long term. Because of the triumph of God’s goodness in all things, he is able to bring good for us out of the bad. He turns our tragedies into supreme blessings."

 When I am tempted to question God's plan in creating Wesley with special needs, I can cling to the promise that while things will be more difficult for him and for us, God has promised to work this trial for our good.  He will turn the hardships that we have walked through and will continue to walk through into a supreme blessing!  And, when God works this trial for good in our lives, that is when He receives much glory.

Secondly, I must have an eternal perspective.  2 Corinthians 4:16-18 says, "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 momentary affliction is preparing for us 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."

It is true that here on earth Wesley only has this one life to live, and that in his lifetime he will face many difficulties and suffer much.  But, praise the Lord, even if he were to suffer every moment of his life here on earth, it is a light and momentary affliction in comparison to the eternal weight of glory beyond all comparison that is awaiting him in heaven.  What I see - a little boy with a chromosomal abnormality who will struggle in this life and never accomplish much in the world's eyes - is transient.  But what I don't see - heaven, where Wesley, in his new and perfect body, will forever worship and sing praise to his creator and savior - is eternal.

When my eyes are opened to the transience of this world and I long for the day when I will see my Savior face to face and worship him forever, God receives much glory.

So, while I wouldn't say that God has made Wesley miserable (you have only to meet my sweet little boy to see that he is filled with joy), I would say that by God creating Wesley with a chromosomal abnormality, He has already received much glory because of how He has worked this trial for good in our lives.  God has used this trial to make me increasingly thankful for my Savior, who has provided for my greatest need by sending His Son to pay the penalty for my sins.  He has used Wesley's medical challenges to remind me that while I am not in control, I can trust Him, for He is upholding Wesley's life.  And He has given me a greater longing for heaven, when all things will be made right, and when I will see Him face to face.

Therapy

WARNING:  This post is long!  I considered  breaking it into five shorter posts, but it seemed fitting that the long, labor intensive task of therapy be summarized in one long post.

One of our greatest blessings and most time consuming tasks since Wesley's birth has been therapy. Currently, Wesley has therapy five times a week, seeing a speech therapist, feeding therapist, physical therapist, occupational therapist, and developmental therapist. In addition, we work with him each day on the things the therapists have shown us in their sessions.

Most of our therapies are in the home, but in September we switched to a feeding therapist at Easter Seals. Although we drive 45 minutes each way to see Judy, we are so grateful for her help. Wesley has low tone in his mouth, a very weak jaw, a poor suck, and a disinterest in trying new foods. He also dislikes it when we put our hands on his face to provide jaw support. So, things that we're working on are chewing, helping him to move his tongue without also moving his jaw, drinking from a cup, getting used to having our hands under his jaw, and transitioning from baby food to table food.

Since we've only been seeing Judy for a few months now, we are excited to be seeing significant improvements.  With all her hard work, he has gone from drinking only out of his sippy cup, to drinking thickened liquids out of an open cup (Gerber 2nd peaches or applesauce), to learning how to drink rice milk and apple juice from an open cup.  He is letting us put our hands under his chin to support him as he drinks, which is amazing given how much he used to hate us touching his face.

He has also gone from not sucking well at all, to sucking Gogurt out of  container, to learning how to suck from a straw.  He still has a long way to go with straw drinking, but with Judy's persistence she's helping him learn to keep his tongue in his mouth, put his lips around the straw, and strengthen his suck.

As I shared here, after eating Spaghetti-O's in therapy sessions in December, he also started eating them for us at home last week! This is a huge step for him.  We would love your prayers that Wesley would continue to allow Judy and I to introduce him to new foods and textures and help him with jaw support. In the past, this has been the area of therapy where he has fought us the most.

Wesley's other therapy sessions are usually much more enjoyable. Wesley loves his physical therapist, Becky. Because of his sensory issues, Wesley always wants to be moving. So, working with him on rolling, scooting, crawling, and walking has been fairly easy. On the other hand, Becky is always trying to find ways to work on stability with him. (He's usually not a big fan of stability exercises!) Because he over pronates and walks with his ankles turned out, Becky recommended that we get Sure Step orthotics for him. They have made such a big difference!  His balance has significantly improved with the orthotics, although he still does fall regularly.

Right now our big goals for Wesley are to teach him how to balance on one foot, play in a squatting position without falling over, stand up by himself without support, walk up the stairs with support, and crawl down the stairs by himself.

Becky has found such enjoyable ways for us to practice these things.  We play with his launch rocket, helping him to balance on one foot while he lifts his other foot to stomp on the launcher.  We also lay out a board and have him practice stepping over it - he thinks it's so funny to go back and forth, back and forth, and I love watching his concentrated expressions as he carefully lifts one leg over the board while using us or a chair for balance.  And of course, we regularly practice going up and down the stairs, which Wesley thinks is such a fun game!  He comes running every time he even hears the word "stairs" mentioned.

Christi used to be Wesley's speech and feeding therapist in the home, but recently switched to just providing speech therapy. That has made such a big difference.  Now Wesley looks forward to seeing her and enjoys their sessions rather than watching her with dread while waiting to see whether it will be a speech or feeding session.

Christi has done a fantastic job of helping us to teach Wesley to communicate, despite his lack of interest in speaking or signing. With her help we have created a picture board with pictures of his favorite toys, along with his sippy cup and several foods he eats. Now when we give him a choice of two different cards he is able to let us know which toy/food he wants.  He loves being able to communicate with us and always has a big smile on his face as he hands us his preferred card.

She also works with him on saying and signing "more" and "all done" along with playing games with him in hopes of helping him to start saying more consonants and words.  We play with bubbles while saying "pop, pop, pop"; we wind up wind-up toys and say "ready, set...." and wait for him to make an attempt at saying "go"; we play with farm animals, working on animal names and sounds they make; we put balls into a popper and say "in"; etc....  So far Wesley's only consistent words are "daddy" and "in", but we have heard him say "mama" a few times and "bubble" once.  So, we will keep working.

He still seems to have a disconnect, where he doesn't realize that he can use his mouth and hands to vocalize and communicate.  So, we would love your prayers that Wesley would understand the power of speech and start attempting to communicate with us.

Wesley's old occupational therapist, Donna, was a spectacular resource for us.  Her expertise and years of experience were such a blessing to us as she has helped us in so many areas.  Before we started seeing Judy, Donna helped us teach Wesley how to close his lips over his spoon rather than keeping his tongue out as we fed him baby food.  She also taught him how to hold his bottle by himself and how to drink out of a sippy cup.  For those things alone, we can never thank her enough!

Another thing Donna noticed was that Wesley's constant need for motion seemed to be a sensory issue.  So, she recommended a SPIO vest to provide him with proprioceptive input.  What a difference that has made!  While he still walks and runs around the house constantly, the vest has calmed him down significantly.  He is now able to sit still for longer periods of time and concentrate on other things rather than just his need for motion.  Since getting the vest, we have seen him make great strides in fine motor skills, feeding, and speech now that he is able to focus better.

Right now, the biggest things we are working on with Wesley are putting shapes into his shape sorter and coins into his piggy bank, working on the concepts of in & out and up & down, and learning to use his pointer and his pincer grasp on a consistent basis.

Wesley's newest therapist is Kiya, who provides him with developmental therapy.  Wesley ADORES Kiya.  The moment she arrives, he runs behind me and stands behind me while peeking around my legs to smile at her and giggle.  As she says hi to him, he starts laughing and will just laugh and laugh with her. Sometimes it is hard for her to get him to participate in activities, because all he wants to do is flirt with her and enjoy her presence.  It is such a joy for me to see the bond they have formed and watch the fun that they have together.

Kiya works with Wesley to help him grow developmentally in how he plays and interacts with others.  Right now our goals are to help him grow in participating in non-preferred activities rather than throwing temper tantrums.  As well, we're working on helping him learn to follow commands (which we - especially Zach - hope will help with learning to share too!),  learn how to imitate us, use his eyes and his hands together when interacting with people and toys rather than looking off elsewhere, and begin to communicate more (whether that be with signs, picture cards, verbal imitation, or words).

Kiya uses a lot of the same activities that we use for occupational therapy and speech therapy, seeking to incorporate the language, fine motor skills, and appropriate play skills all together into the activities we do.

We are so thankful for all of our therapists and for the ways they help us.  God has very clearly hand picked the perfect ladies to help Wesley to learn to the best of his abilities.  They have become a part of our family, and we will miss them greatly when Wesley ages out of Early Intervention.

School

After much anticipation, today was Zach's first day of preschool. He was so excited that he couldn't wait to get up this morning... literally!  He had his clothes all set out last night and was up and getting ready before 7 a.m.  (Normally we encourage him to stay in bed until 7, but today was a special occasion.)

On the way out the door, his smile was a mile wide as we grabbed his Lightning McQueen backpack and his lunch box.  He also made sure to bring the picture he colored for his teacher and the homemade envelope he had taped together to put it in.

Upon arriving at school, he was excited to find a coat hook especially for him.  It even had his name above it.  He proudly hung his coat up and then did a little dance in the hallway as I talked with his teacher.  She was so welcoming to Zach, and within two minutes she had him talking her ear off.

When I arrived to pick him up, I saw him laughing with the other boys at the lunch room table.  Then, when he saw me, his whole face brightened up.  He couldn't wait to finish lunch and show me the activities he had completed and the treat his teacher left in his cubby for him.

I thoroughly enjoyed listening to him this afternoon as he explained in great detail the instructions his teacher gave him for each activity and how he followed them.  He took the time to show me how on one of his papers he wrote his own name, because he told his teacher she didn't need to write it for him since he could write it himself.  Pacing back and forth in the kitchen, he spoke animatedly about the toys he played with and the  conversations he had with other kids in his class.

It was such a joy for me to watch my son have an amazing first day at school.  Thank you Lord for providing Zach with such a wonderful teacher and class.

Much Given...Much Required

Dear Zach,

When I watch your little mind at work, I am in awe.  The questions you ask and the vocabulary you use are constantly reflecting depth of the thoughts running through your little head.  When you use words like "ubiquitous" or "occupied" correctly in a sentence, my jaw drops.  Often, instead of answering your questions, I am asking you, "Where did you learn that?".  The other day, you informed me that you could count to 100.  Believing that you would count to 20 and then get stuck, I asked you to show me.  And you did!

You are reading so well, and you often pick out words that you can read when I am reading books or the Bible to you.  Then today, when I picked you up from Sunday School, I looked down at the picture you colored and my eyes went wide.  You didn't color very much, but your name was clearly written across the top of the picture, and not in your teacher's handwriting.  I asked you if your teacher had helped you write your name, and you said no.  You informed me that you told your teacher you could write your name all by yourself - and then you did it!

But Zach, when I see the mind that the Lord has blessed you with, I am reminded of the words that Jesus spoke in Luke 12:48.  "From everyone who has been given much, much will be required; and from the one who has been entrusted much, much more will be asked."  Zach, I don't know why the Lord gave you the mind that he gave you while giving Wesley the mind that He gave him.  But I do know that the Lord has given you much, and as one to whom the Lord has entrusted much, much will be required of you.

When I look at you and Wesley together, I often smile as I see God's wisdom in giving Wesley to you as a brother.  I pray that growing up with him, helping him, loving him, and seeing how hard it is for him to learn things will humble you.  I pray that God will use the difficulties that Wesley experiences to help you realize that everything you have is a GIFT from God.  I pray that you will never grow proud because of what you accomplish, but that you will thank God, knowing that He is the giver of all good gifts.

I pray for you each day, that you will trust in Jesus as your Savior and that you will love the Lord your God with all your heart, with all your soul, with all your mind, and with all your strength.  My heart will rejoice if one day I can say, "This is my son Zach, a man after God's own heart."  God has given you much Zach, and if you love your Savior and seek to follow Him all of your days, then you can use the gifts that He has given you to further His kingdom and to bring Him much glory.

Zach, I can already see that the task ahead of Daddy and I will be difficult as we seek to teach you and model for you humility and a love for our Savior.  But, I also rejoice as I see the Lord already at work in your heart, drawing you to Himself.

Love,

Mom

Bubbles

Dear Wesley,

Have I ever told you that your laughter is contagious?  Once you start laughing, it's hopeless for me to try to keep a straight face. And when Zach and Daddy are around too, you're sure to get a whole symphony of laughter going.

My favorite thing about your laughter is that you laugh with a purpose.  You don't just laugh because you think something is funny.  You laugh because not only are you enjoying something immensely, but you want EVERYONE around you to enjoy it just as much as you do.  If we don't start laughing right away, you come over and stand right in front of our faces and keep laughing until we join in with you.  (You would be thrilled to know that I am laughing right now just thinking about your enthusiastic laugh!)

We recently figured out that one sure way to get you laughing is for Daddy to blow bubbles while you and Zach run around trying to pop them.  To say that you love bubbles is an understatement. They have been a therapy tool for months as we have used them to work on lots of things you weren't interested in working on otherwise.  (You probably have no idea that we've been working on getting you to say your "p" sound as we say "pop, pop, pop", or that popping bubbles is practice with using your pointer finger, or that we were all thrilled beyond belief last week when you made the connection that signing "more" can be used not only to request more food, but also to request more bubbles!)

Anyway, back to my story.  Daddy and I have never seen you and Zach have as much fun laughing as you did the first night that Daddy pulled out the bubbles.  If you were expecting more therapy when you saw the bottle come out, you were in for a surprise!  Instead Daddy blew bubbles EVERYWHERE while you and Zach chased them.  (Really, Zach chased them while you laughed at his antics and ran around in excited circles.)  In fact, I think you thought watching Zach dive around popping bubbles that were almost out of his reach was way funnier than popping the bubbles that Daddy blew right to you.

Soon chasing bubbles turned into chasing brothers.  You started chasing Zach around while he squealed with laughter, enjoying watching you run after him while staying just out of your reach. You two laughed and laughed while you ran in circles around Daddy's lounge chair in the family room.  Eventually Zach let you catch him, and I think you thought that was the funniest thing EVER!  Zach fell to the floor and yelled, "Wesley, tackle!".  Then you ran over to him, looked at him and just cracked up, and reached out your arm to gently nudge him.  Zach threw himself exaggeratedly to the floor as you fell on top of him, squealing with delight.  You two kept chasing and wrestling until you eventually wore your big brother out.  You know, he can't run around 24-7 without getting tired the way you can.

Daddy and I even caught you standing up BY YOURSELF in the middle of the floor to chase Zach again rather than crawling over to the couch to pull yourself up.  And even better, you were so cute that I decided to take a video of you.  Amazingly, it was during this video that you decided to say "bubble" for the first time!  Daddy and I couldn't believe it!  We were so proud of you!

Wesley, you are such a delight and a blessing!  You bring so much laughter and joy into our home.  I love you so much, and I know your Daddy and big brother do too!

Love,
Mama

Standing Steadfastly - Part 2

Click here to read Part 1.

In my last post I wrote about how in the midst of this trial, God Himself is my way of escape.  When I take advantage of the means of escape that He has provided for me by calling out to Him and trusting in His faithfulness and goodness and sovereignty over my circumstances, then He lifts me up and causes me to stand up under the trial I am walking through rather than be weighed down by it.

But how do I remain steadfast in this trial, continuing to stand rather than slowly being weighed down over time until I am crushed underneath the weight of it all?

According to James 1:2-12, I am to count it all joy when I face trials of various kinds, because I know that the testing of my faith produces steadfastness.  This means that the trial the Lord has called me to walk through is being used to test me with the express purpose of strengthening my faith.  As my faith in God is strengthened, the result is steadfastness, which the ESV Study Bible defines as "a life of faithful endurance amid troubles and afflictions".

James goes on to say, "And let steadfastness have its full effect, that you may be perfect and complete, lacking nothing."  It is amazing to me that God has designed it so that the way that I am to grow in holiness is by walking through trials, counting it joy because I know that God is using these very trials to teach me how to faithfully endure by trusting in my faithful God.

God even addresses what I am to do when I begin to feel crushed by the weight of it all again - not knowing what to do, fearing the future, lacking wisdom for how I am to best care for Wesley while still caring for and loving the rest of my family.  God tells me that He WANTS me to ask Him whenever I lack wisdom.  And, He promises to give wisdom generously whenever I ask.  In fact, it glorifies Him when I seek His wisdom, trusting that He is good and will work all things for good.  I am so grateful for God's promise to generously give me wisdom as I trust in Him and call out to Him, that I might remain steadfast as I walk through this trial.

As I look to God as my way of escape and faithfully endure this trial while calling out to God for wisdom, I am trusting that He will continue to lift me up and cause me to stand up steadfastly under it.  I pray that one day God will receive much glory as it is said of me, "Blessed is Elisabeth, for she remained steadfast under trial.  She has stood the test, and she will now receive the crown of life, which God has promised for those who love him."

Success!

Today was a big day for us.  A huge day!

Wesley's feeding therapist has been working with him for months to get him to eat "big people food".  In December he started eating Spaghetti-O's with meatballs and mini ravioli with meatballs for her, but he refused to eat them for us at home.  He also started drinking juice or rice milk from an open cup for her, but again was refusing to drink from an open cup for us.

We talked with Wesley's therapist and concluded that this was yet another case of Wesley's motor planning issues.  He always insists on everything being done the same way by the same person in the same place.  So, we figured that he had associated eating non-baby food with his therapist and the therapy center.  He wasn't able to make the motor plan transition to permitting us to feed him at home in his high chair.  Yesterday at his feeding therapy session, his therapist worked on helping me to feed him and encouraging him to eat for me.  She even gave me an extra cup she had for assisting him with open cup drinking.  It was a spectacular success!  But we still had to transition his feeding home, and after so many failures, my expectations were quite low.

Surprise of all surprises, Wesley gobbled up his Spaghetti-O's and meatballs and drank 2 ounces of milk from his cup for lunch today!  Of course, I had to adhere to the strict structure of the meal to make it as similar to his therapy sessions as possible.  First we practiced chewing by taking bites of veggie straws on each side of his mouth.  Then he watched me pour the Spaghetti-O's into a bowl, which I put on his tray.  (I normally NEVER put bowls of food on his tray and in reach of his swiping hand!)  I gave him several bites with a spoon to acclimate him to the taste, texture and temperature.  Then we went in with the fork!  We went back and forth, putting bites of meatballs on each side and practicing chewing.  Wesley tolerated it amazingly!

After Wesley was full, we started practicing with open cup drinking.  He let me put one of my hands under his chin for support while I held his cup up to help him take sips.  He signed more between sips to let me know that he wanted to keep going.  He even laughed as I would bring his cup up to his mouth for more!  I couldn't believe it!

Thank you Lord for helping my son to start eating.  We have been praying for so long for a breakthrough, and it seems that today is the day You have chosen to answer our prayers!

Standing Steadfastly - Part 1

The last few weeks I have been pondering what it means to remain steadfast under trial.

In 1 Corinthians 10:13, it says "No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to stand up under it."  What a comfort it is to read this verse and to be reminded that God is faithful!  And because He always has been and always will be faithful, I can trust that He will be faithful to me. Right now.  In this trial.  

In His faithfulness, He has promised that He has not and never will give me more than He will also give me His abundant grace to handle.  I readily confess that I have way more than I can handle in my own strength right now.  But, can also attest to the fact that to this point, God has been faithful to never allow me to be tempted beyond what he has also given me the grace to be able to do.

What I find most beautiful about this verse, though, is God's promise that with the temptation, he will also provide the way of escape that I may be able to stand up under it.  Trials weigh us down.  Having a child with special needs is a weight that I carry each day.  It is easy to lose heart, to fear the future, to be filled with guilt when I feel like I am not doing enough.  This weight affects not just my own heart.  It also affects my relationships with others - my husband, my children, and my friends.

But in this verse I am reminded that God never sends a trial without also sending a way of escape.  This does not mean that God has provided me with an earthly escape.  God has given us no promise of physical healing for Wesley.  God does not promise that things will get easier with time.  What He does promise is that He will give me Himself.  When I call out to the Lord in the midst of my trials, He will hear my cry and will answer me.  He will help me and will give me rest.  He will lift me up and cause me to stand even in the midst of the trials that He has called me to walk through.

God Himself is my way of escape, and when I call out to Him and take advantage of the means of escape that He has provided for me, then He lifts me up and causes me to stand up under the trial rather than being weighed down by it.  When I take His yoke, I find that His yoke is easy and His burden is light (Matthew 11:28-30).

Click here to read Part 2.