First Sentence

Dear Wesley,

Have I ever told you that the sound of your voice is music to my ears?  Whenever you babble and talk to yourself in the mirror, laughing at your own jokes, if you would turn and look, you would see me entering into these moments and smiling with you.  As you've started adding more consonants to your babbling, I often find myself pausing and taking mental pictures, trying to savor and remember these special times. I relish every conversation that you have with yourself, imagining that some day this will translate to similarly enthusiastic conversations with me and your brothers.

The other day I started counting and was surprised to realize that you can verbalize most of the sounds of the alphabet.  You still get stuck on the hard ones (j, l, q, r, v, x, y, z, sh, ch, th), but you've nailed the rest!  I know you get tired of working with me on imitating sounds every day, but when I am consistent, I am finding that remembering the motor plan required to imitate each letter is much easier for you.

I often wish that I could help you more with your struggles with motor planning.  As you watch me intently and then struggle to imitate my sounds, sometimes making a completely different sound and then throwing back your head in frustration, it breaks my heart.  How I wish that speaking wasn't so difficult for you.

A few months ago, Miss Judy started working with you to say "I want..."  At first I wanted to correct her - to remind her that you struggle with the motor plan for most sounds and the motor plan for putting sounds together to make words is almost impossible for you.  How could she possibly think that you could master the motor plan for putting multiple words together?  Instead, I held my tongue and just watched as she worked with you.  She came up with hand motions for you to do to help you remember what sounds to make.  At first you just watched her, but over time you started trying to imitate her.

About a month ago, you started pointing at your eye and opening your mouth when you wanted to say "I" and putting your hand over your mouth to say "want".  No sounds came out of your mouth, but it was a start.  Then about a week later, you started saying "ah" for I and "ah" for want along with doing the hand motions.  You still had to be prompted for each word individually, and sometimes it took several tries for you to get it, but you worked so very hard to learn these words.

Then last week the motor plan finally clicked in your mind.  You started running up to us and saying "ah" while pointing to your eye.  When we said "I", you would then say "wa" while putting your hand over your mouth and wait for us to say "want".  You would then grab our hand and drag us to show us what it was that you wanted.  We kept working on this and you soon realized that when you became upset and I asked you what you wanted, you could now answer my question instead of throwing a fit.  Then you added "ee" to your I and now say a beautiful "ahee" for I.  It is perfect!

This Wednesday you proved my initial assessment of your abilities wrong.  During a therapy session with Miss Marsha, you started yelling because she took away your favorite red stacking cup that you love to carry around while she is here.  She kindly asked you wanted, and you looked her straight in the eye and said "I wa(nt) cu(p)!"  There was no prompting or assistance. You knew what you wanted and you emphatically told her!

Mommy and Miss Marsha looked at each other, saying "Did you hear what I heard?  Did Wesley really just say "I want cup" with no assistance?"  You sure did!  You took that first step and are on your way to those conversations with Mommy that I often dream about.

Now you run around all day long saying "I want" and then dragging me to what it is that you would like to play with or see.  Coming with you to see what you want has become my full time job.  At first I was worried that this was giving you the opportunity to drag me around insisting that I give you whatever you want all day long.  But I am starting to realize that you just love your new ability to communicate with me.  Since this is the only thing you know how to say, you want to say it to me over and over again so that we can talk together.

So yes, Wesley, I will happily walk around with you and talk about what you want.  We can play with your ball-popper and your gears and get out multiple spoons and bowls from the drawers.  We can open doors and then close them again.  We can pull out milk and then put it back in the fridge.  And I will do my best to not complain, because guess what, YOU ARE TALKING!  And I love every word that you say.  I love the radiant joy in your eyes when you run up to me with a smile, point to your eye, and say "ahee wa dat!"  I love how you emphatically pat your chest as you say "dat".  I love holding your little pudgy hand as you drag me off to some new and exciting object that has caught your fancy.

Your voice is beautiful, my son, and it is my joy to talk with you.  I am thankful that you want things and that you want to tell me about it.

Love,
Mama

Friends

Wesley has never been interested in other children.  When he is around kids that are younger than him, he doesn't even see them, which often results in him running into them at full force with all of his thirty-two pounds and knocking them flat on the ground.  If we have a play date with other children his age or older, Wesley ignores them, preferring to play by himself. Wesley does love to play with Zach and will follow him most of the day trying to persuade him to play chase.  But for some reason his joy in playing with other children hasn't spread past his big brother....until Monday.

On Monday, for the first time, I watched Wesley thoroughly enjoy himself playing "Ring Around the Rosie" with a friend and her almost two-year-old son.  Wesley consistently made eye contact with his playmate rather than just with my friend, and the boys laughed together every time they fell down.  They would both say "down" as they fell and then clap for each other.  It was such a precious moment for this mother's heart as I watched my son play with another boy and enjoy himself.  Even more dear to my heart was that this little boy enjoyed playing with my son.

Then on Tuesday we had some friends over for a play date (our first one in many, many months), and while the big kids played upstairs, Wesley and the two-year-old girl played together downstairs.  She loved jumping on his trampoline, and his face was radiant as he faced her and jumped on the floor.  The two of them laughed and laughed as they jumped together.  Then later they ran around chasing each other and laughing.  I don't think I have ever seen him have so much fun with another child other than his brother before.  This time too, my heart was touched as I watched this very talkative little girl enjoy playing with my boy without questioning his lack of communication or his funny ways of doing things.

I pray that as Wesley becomes more aware of others around him, God will always surround him with dear children like these two who will welcome him and enjoy playing with him.

Speech Therapy Fun

Say "Eeeeeat"!

Yummy french fries!

No, no duck!  Don't eat Wesley's hand!

That's much better!

Up!

My eyes widened and I looked up in astonishment.   Did my son really just talk?  To me?  Did I actually hear him or was it all just a figment of my imagination?  But there he was, standing in front of me with a look of expectancy in his eyes.  So I picked him up, hugged him tight, and took a minute for excessive cheering despite the fact that I had just put him into his pack-n'-play to play while I fed his little brother.

Those two little letters have never before sounded so beautiful to my ears.

Fast forward one week and it happened again...

We were playing with Mr. Potato Head and had just pulled out the eyes to put into the potato when Zach came running downstairs to talk to me.  As I turned to face him, I heard a sweet little voice behind me saying "aaahhs".  Assuming it couldn't be true, I swung my head back around to find my boy closely inspecting and poking at Mr. Potato Head's eyes.  Again, cheering ensued as Mommy and big brother celebrated with much praise.

While these may seem like very small baby steps toward speaking, they are big steps for Wesley.  He is learning to communicate without prompting, and he is slowly figuring out the motor plan for putting a consonant after a vowel in a word rather than just speaking the first consonant with an "ah" sound after it.  As well, he is beginning to breathe before speaking which allows him to hold out a vowel for longer than a millisecond.

Speaking is hard work, but we're getting there - one step at a time.

Sweet Smiles

Snow Day

Last week we enjoyed our first snow of the season.  Zach thoroughly loved running around and playing in it while entertaining Wesley at the window.  It was such fun to watch Wesley plaster his face to the window and laugh at Zach's antics.  Of course I forgot to put Zach's snow pants on...that won't be happening again!

Smiling at his little brother...if only I could have bottled up some of Wesley's giggles.  He adores his big brother.

I'm pretty sure this pose has something to do with Star Wars.

Seven Weeks

The last seven weeks have flown by in the blink of an eye.  I am amazed at how quickly we have adjusted to being a family of five.

Liam is a delightful baby.  He has been sleeping through the night for two weeks now, which has been a precious gift to his mommy.  Getting a full and uninterrupted eight hours of sleep every night makes a big difference when six in the morning comes around and big boys start calling.  After a rough first two weeks, he is now nursing like a champ.  Every time I sit down to feed him is another opportunity to thank God for giving me the gift being able to nurse my baby.  When I recall how I pumped for eleven months with Wesley, it is impossible to overlook God's kindness in this area.  Holding Liam close and looking into his eyes as he eats is always one of the highlights of my day.

Smiling is one of Liam's specialties.  He endears himself to everyone who holds him as he gives them the most adorable smiles.  If he keeps this up, he'll have us all wrapped around his little finger.  As it is, his big brother Zach is already his biggest fan.  He regularly lays down next to Liam and whispers sweet nothings in his ear.  How it touches my mother's heart to watch the two of them together.  Liam has started cooing too, and we all enjoy hearing his little voice.  I am amazed each day at how quickly he is growing up.

Wesley has adjusted amazingly well to the birth of his little brother.  Through the help of the ladies and teenage girls at our church, he has made great strides in the past two months, and I have been so encouraged by the new things he is learning.  He consistently chooses the correct shapes and colors when presented with two choices and a verbal prompt, and he is doing a spectacular job of putting shapes into his shape sorter and puzzle pieces into a puzzle without assistance.  As well, his communication has improved.  He is now using his picture board much more consistently to communicate his needs.  He also imitates us much more often when prompted to say a word that he knows.  He still mostly only says the first consonant of a word with the "ah" sound after it, but it is still a big improvement.  He can also tell me that the sheep says "baa" when I ask, which is a big step for him since he is answering a question rather than imitating an answer.  But his biggest gift to me is that he now says "mama", which is music to my ears!  I love watching him purse his lips together and focus to get that "m" sound out.

Wesley basically ignores Liam, but given that the alternative would probably include hitting him and regularly falling on him, I don't mind his oblivion right now.  He'll have plenty of time to play with Liam as he gets older.

Zach has been a huge help to me since Liam's birth.  He is quick to run around and get things for his baby brother, and he loves to lay down by Liam and watch him for me so he doesn't get inadvertently stepped on.  Zach and I have also enjoyed reading books and playing games together while I nurse Liam.  It has been a blessing from the Lord to have such sweet times with him while Wesley is watching a video or playing quietly in his pack n' play.

God's promise that His grace is sufficient for me and His power is made perfect in my weakness has again proven true.  After two weeks of an easier schedule, I quickly jumped back into our crazy routine of driving Zach to school and Wesley to therapy, welcoming therapists into our home every day, taking all three boys to doctor's appointments, making a surprise trip to the ER, taking care of Liam, cooking dinner, and starting again last week, working one-on-one with Wesley each day.  I don't know how there are enough hours in each day for all of these things to get accomplished, but God is faithful and He has given me the grace to take each day moment by moment rather than be overwhelmed at the task ahead of me.  And really, the boys have adjusted spectacularly.  Our days really don't feel any more busy than they were two months ago.  It helps that God has blessed us with a spectacularly easygoing baby - just another reminder to me that God knows our needs and He cares for us.  Liam fits perfectly into our family and has brought so much joy to our days.

"Preserve me, O God, for in you I take refuge.  I say to the Lord, "You are my Lord; I have no good apart from you."...  The Lord is my chosen portion and my cup; you hold my lot.  The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance.  I bless the Lord who gives me counsel; in the night also my heart instructs me.  I have set the Lord always before me; because he is at my right hand, I shall not be shaken.  Therefore my heart is glad and my whole being rejoices; my flesh also dwells secure.  For you will not abandon my soul to Sheol, or let your holy one see corruption.  You make known to me the path of life; in your presence is fullness of joy; at your right hand are pleasures forevermore."  Psalm 16:1-2, 5-11

The Sun Will Rise!

It seems that around here, if it's not one thing, it's another.  Just as we thought all medical issues in our family were resolved, another one was discovered.  After months and months of Wesley being sick nonstop and even getting sick multiple times while taking antibiotics, we decided to run tests to see what might be causing these issues.  Preliminary tests are showing that he has deficiencies in his immune system.  We still have quite a few more tests to run on him to identify what might be causing this and how serious it is, but based on his initial results, our immunologist gave us worst case scenarios that were not encouraging to hear.  We are praying the rest of his test results will show that drastic measures are not necessary.

In the midst of learning this, I was introduced to Matt Hammitt (of Sanctus Real) and his solo album Every Falling Tear, which includes many songs that he wrote after his son was born in 2010 with a serious heart defect.  His song This Is Grace has encouraged me countless times over the past few weeks, and I often find myself singing the words of the chorus as I go about my daily routines.

Wesley's diagnosis and subsequent medical issues have shown me that I am helpless without Christ - and this is grace!  I am thankful that Christ did not leave me helpless, but that He came to earth to be born as a man and to give His life for me.  And I rejoice that He has not allowed me to pridefully be self-sufficient but has shown me that I am helpless without Him. This is His grace as I walk through the dark night that is the effect of the curse in this world.  I have been marked by suffering, but as a result, I have found my joy.

And one day, the sun will rise!



This Is Grace
Matt Hammitt

The reason for our suffering
Is to help us realize
That in sickness and in death
We are helpless without Christ
And the reason for our blindness
Is for Jesus to open our eyes
Bless the Lord, bless the Lord

This is grace, this is grace
When we walk through the dark night
This is grace, this is grace
So we wait for the sunrise
How I long for the sunrise

Your glory has always been shining
Since the beginning of time
But in the face of darkness
How radiant Your light
Bless the Lord, bless the Lord

This is grace, this is grace
When we walk through the dark night
This is grace, this is grace
When we wait for the sunrise
How I long for the sunrise

And the ones who are marked by suffering
Are the ones who have found their Joy
To be conquerors in all these things
Struck down but not destroyed
Bless the Lord, bless the Lord

This is grace, this is grace
When we walk through the dark night
This is grace, this is grace
So we wait for the sunrise

This is grace, this is grace
When we walk through the dark night
This is grace, this is grace
So we wait for the sunrise
And I have faith the sun will rise

A Mother's Heart

As I think back over the past two-and-a-half years, I remember the feelings of being forgotten by those around me as time went by after Wesley's diagnosis.  After the first few months of his life, it was as if others moved on with their lives while I was left to deal with the repercussions of Wesley's diagnosis for the rest of my life.  I remember how difficult it was to find babysitting for Zach during Wesley's countless doctor's appointments and procedures and how often I was tempted to judge the hearts of my friends when I felt they had forsaken our family.  I remember the heartbreak as the frequency with which people asked how Wesley was doing decreased.  Did no one else care about my son?  What a fight it was to not close up and build walls in my friendships.  I struggled to keep communication open and share our difficulties and struggles even when it felt like no-one else understood or even wanted to know how we were doing.

God used this season in my life to teach me that while He often uses others to help his children, ultimately our help comes from Him.  I learned what it meant to lean on Him completely.  Just recently I went back and read a post I wrote last December about all that God was showing me:

Yet, as I reflect on the Lord's faithfulness to me and to our family, I am amazed that so often when I am overwhelmed or in need of help, I look first to others rather than to the Lord. Then, when they don't sustain me or help me or strengthen me the way the Lord does, I am hurt by their lack of help or by my perception of their lack of care. I am quick to judge their motives and slow to show them the same grace that the Lord has shown me. I was recently reminded by a dear friend who is much farther along on the path of raising a child with special needs, that the bottom line is that my help comes from GOD. God provides for my needs - not the church, and not my friends in the church. God may use my friends, but I need to keep my eyes on Him. When I need help, I need to go to the Lord first and trust that HE will provide. And, I need to remember that most people have had very little contact with people with special needs. In their ignorance, they don't know what to say or how to help. It is God's kindness to me to put me in situations with others where I can begin to adjust to this truth and learn to trust God in the midst of it all. And, if God is not providing for me through others, I have to trust that God has called me to walk through a particular trial or season alone. My circumstances are ordained by God, and I can trust that the Lord is faithful and kind, and he will be faithful to provide for my every need - just as He always has.

Then, about a year ago, God in his kindness chose to change our circumstances.  As I look back, it is clear that it was important for Him to first teach me to trust Him wholly and look to Him first and foremost before opening up the floodgates of care from others for our family. Last November we stepped down from some responsibilities at church and transitioned to a much larger small group.  As a result, for the first time in a long time, we began to experience large amounts of care for our family.  Our care group leaders regularly took time to care for our souls, pray for Wesley and for us as we sought to care for him, and lead others in our care group to do the same.  The care we have received over the past year has been used by the Lord to strengthen our marriage, encourage us through difficult times medically, and even just give us strength as we have known we were not alone.  The couples in our care group have mourned with us, rejoiced with us, and walked beside us through the hard times.

This fall, as it became apparent to us that I would be unable to maintain Wesley's rigorous therapy schedule after Liam's birth, our wonderful care group leader's wife offered to coordinate assistance for us during the first month of Liam's life.  Previous experience has taught us that Wesley struggles significantly when he has a lack of structure and when his sensory needs are not met daily.  As well, he tends to forget what he has learned when we take a break in our therapy schedule.  To be honest, after our struggles with getting help over the past two years, I feared that our care group leaders would be unable to find people who were willing to sacrifice their schedules to care for us.  Much to my surprise, ladies and teenage girls quickly volunteered to assist us.  Five ladies/girls have faithfully showed up at our doorstep each weekday for the past month to spend an hour working with Wesley.  Their care for our family and love for my son has touched my heart deeply.  I will always treasure these weeks in my heart - the weeks when I saw the love that these women have for my son and the way that they kindly gave of their time to help the least of these.  Truly, this past month I have been freshly reminded of God's love for Wesley and His faithfulness to provide for all that my precious son needs.

As well, during the first week and a half of Liam's life, while we fought for faith as we feared the outcome of his genetic testing and worked for long hours each day with him as he struggled to learn how to eat, many ladies at our church rallied around us, bringing us meals, bringing Zach back and forth to school, and taking Wesley to therapy.  These things I will also treasure in my heart.  God again demonstrated powerfully that He will show our family steadfast lovingkindness all of our days.  There will be seasons when He will show us this as we walk alone, and there will be seasons when He will shower us with love through the care of others.

It is amazing to me to look back and see how much has changed since last summer when I struggled so much with feeling like I was walking through all of our struggles alone.  While last summer, mine was a lonely path, this winter our path has been shared with countless families at our church who have come alongside us and supported us.  As I look back at the past four weeks and think of all of the ladies and teenagers who have so selflessly given of their time to care for our family, I see the hands of God reaching down and tenderly and compassionately caring for our family. I am again reminded of His love for us.  He has abundantly provided for all of our needs beyond anything that we could have ever asked or even imagined.

My mother's heart will always treasure the month in the winter of 2011 when God reached down and used His people to care for a family He loves and a precious little boy He delights in and created in His very own image.

"He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things?"  Romans 8:32

"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

Happy New Year (And A Merry Christmas)

God Delivers Us

Contrary to popular belief, God does not place us on the sidelines of life when we walk through hardship. Rather, he takes us to the center of the playing field, so that the world can watch and observe his faithfulness in our lives.

God delivers his people in two ways: he delivers us from our trials, and he delivers us through our trials. The interesting thing is we do not have a choice as to which path we travel. Whether we experience his miracles of deliverance, endure hardship and trials, or even face death, we remain, now and forevermore, his witnesses. This is the essence of our life in him.

John Eaves, An Aim that Keeps Me Pressing On in O Love That Will Not Let Me Go, edited by Nancy Guthrie, pp. 76-77.

Tummy Time

Tummy time isn't shaping up to be a huge success so far.

Then again, wake time in general seems to be overrated around here.

Waiting and Fighting for Faith

Shall I take from Your hand Your blessings
Yet not welcome any pain
Shall I thank You for days of sunshine
Yet grumble in days of rain
Shall I love You in times of plenty
Then leave You in days of drought
Shall I trust when I reap a harvest
But when winter winds blow, then doubt

Eight and a half long months have passed since a pregnancy test confirmed my suspicions - I was pregnant.  I had always wanted four or five children, while Mike always wanted three. But then when we received confirmation of Wesley's diagnosis, along with the knowledge that any consequent child would have a fifty percent chance of having this same chromosome imbalance or a derivation thereof, we decided it would probably wise to consider our family complete.  While I grieved the end of my dreams, I was at peace with our decision, trusting that because these were the circumstances that God had given us, we could trust that they were what was best for our family.  Deep down, though, I still hoped and prayed that maybe someday God would bless us with another child.  Neither Mike nor I expected God to answer my prayers so quickly though, or in such a surprising fashion.

Upon receiving the news that I was pregnant, the fears that had been held at bay over the past few years rolled in like a flood.  Early on in the pregnancy, I felt that the Lord was preparing my heart for very difficult circumstances following our baby's birth.  I couldn't shake the feeling that this child would also have a chromosomal abnormality, and that the road ahead of us would become exponentially more difficult than it already was.

Oh let Your will be done in me
In Your love I will abide
Oh I long for nothing else as long
As You are glorified

Over the past nine months, I have fought a fight for faith like I have never fought before and pray to never fight again.  It was a fight to trust that God's plan truly was perfect, no matter what that plan held.  It was a fight to believe that God was good and only gave good gifts to his children, no matter what gift I received.  It was a fight to truly give up my desires and longings and ask God to help me to trust Him as His will was done in my life and in our family. The cry of my heart became, "Lord, please help me long for nothing else as long as You are glorified!"

In and of myself, I desperately longed for a healthy, normal child who would not struggle throughout their life.  But I knew deep within my heart that if God chose to give us another child with special needs, His character had not changed.  He was still good.  If I was indeed to walk through the rest of my life with two children with disabilities, I would need to trust God with all of my heart and believe His promises.  I would need to open my hand willingly, releasing my dreams for my children to Him and trusting that God's love for me and for our family was far greater than the difficulties we would walk through in this life.  I had a choice ahead of me.  Would I abide in God's love as He gave me His good gifts, or would I bitterly charge Him with forsaking me if I disliked the gifts He gave?  Daily I begged God to help me thank Him and rejoice in His good gifts to me.  I desperately wanted to long for His glory more than my ease and comfort in this life.

Are You good only when I prosper
And true only when I’m filled
Are You King only when I’m carefree
And God only when I’m well
You are good when I’m poor and needy
You are true when I’m parched and dry
You still reign in the deepest valley
You’re still God in the darkest night

When our precious son Liam was born, the fight for faith only increased.  From the moment I looked into his eyes, I saw so many similarities between him and Wesley.  In addition, Liam chose to follow in his brother's footsteps in the feeding arena.  He had a great first session nursing but then was unable to latch or suck nutritively.  With each passing day, his ability to nurse seemed to decrease further.  When he was six days old, I reached rock bottom.  I will never forget holding him in my arms and weeping as I looked to what I imagined the future to be and grieved the life I believed God had chosen to give him.  It all seemed so very overwhelming and hopeless.  It was in that moment that God used my husband to gently remind me that God had already ordained all of Liam's days before even one of them came to be.  God loved Liam and had created Him according to His perfect plan for his little life.

That night I spent time praying through Psalm 23 and allowing the Lord to restore my soul. Because the Lord was my shepherd, I would never lack anything that I needed to walk the path He had ordained for me.  Even if the pastures seemed brown and dead and the waters appeared to be a flood, I could trust that the pastures God was calling me to lie down in were green.  The waters He was leading me to were still.  His name's sake was at stake here, and He was promising to lead me in paths of righteousness.  So, I could trust that He would do just as He promised.  Even in this moment when I was walking through the valley of the shadow of death, I would choose to fear no evil, for I knew that God was with me.  He was leading me and protecting me even in this valley, and that brought me much comfort.  More than that, I could cling to the promise that goodness and mercy would follow me all the days of my life, and I would dwell in the house of the Lord forever!  Even if the imagined worst case scenario was true, God's goodness and mercy would still be abundantly poured out on me and our family for the rest of our lives.  And, if that wasn't enough, I had a sure promise that I would spend eternity with my Savior where all things would be made right forever.

Oh let Your will be done in me
In Your love I will abide
Oh I long for nothing else as long
As You are glorified

The next afternoon our pediatrician's office called with the results of Liam's chromosome study. They were normal!  As I reflect on the past days, weeks and months, I am so grateful that the Lord did a work in my heart before I received those results.  I am thankful that the Lord gave me the opportunity to fight for faith, teaching me again what it means to trust Him and believe that He is good.  While I rejoice with all of my heart that God's good gift for Liam includes a normal chromosomal alignment, I can also say that even if that had not been God's will for Liam, His plan would still have been good.

The fact that Liam appears to have a normal set of chromosomes does not mean that I will never again be tempted to fear, for now his life will be perfect and easy.  I am no fool.  Liam is still a sinner living in a sinful world.  He will still experience pain.  He will sin and will be sinned against.  I will have plenty of opportunities throughout his life to fight to trust the Lord.  But my greatest prayer for him will always be, as it is for his brothers, that God will be glorified in his life as he trusts in Jesus as His Savior and lives out his life for the glory of God.

Mists and Fogs

"What if, sometimes, there are mists and fogs so thick that I cannot see the path?  ‘Tis enough that You hold my hand, and guide me in the darkness; for walking with You in the gloom–is far sweeter and safer than walking alone in the sunlight!

Dear Lord, give me grace to trust You wholly, whatever may befall; yielding myself up to Your leading, and leaning hard on You when “dangers are in the path.”  Your way for me has been marked out from all eternity, and it leads directly to Yourself and home!"

~Susannah Spurgeon

Baby Liam

On Monday, November 28th at 1:57PM, we welcomed William (Liam) Isaiah into our family. Liam entered this world after a spectacularly uneventful labor and delivery.  We are grateful that he chose to chart his own course rather than following in the footsteps of his brothers, who were both born in the midst of scary circumstances.

I arrived at the hospital at 10 in the morning, thinking I might be in pre-labor but expecting to be sent home as I was the day before.  Instead they admitted me right away and informed me that I was already dilated to 6 centimeters.  Four hours and three pushes later, sweet Liam was born.

He has been a very happy, peaceful baby so far, mostly sleeping his life away.  It is a rare experience to see his beautiful gray eyes.

Zach is loving being a big brother and regularly comes over and talks so sweetly to Liam.  It is music to my ears to hear him oohing and aahing over his baby brother.  At first Wesley seemed to not notice Liam at all, but yesterday he started looking at him and today he has become thoroughly intrigued by him.  I'm not sure he really knows what's going on, but he'll figure it out soon enough.  It is so precious how he comes over, signs baby, tips his head to one side to watch Liam intently, and then reaches out to gently rub his head.

We are so thankful to the Lord for blessing us with our precious son Liam, and we pray that one day he will put his trust in his Savior.

For you created Liam's inmost being; you knit him together in my womb.  I praise you because Liam is fearfully and wonderfully made; your works are wonderful, I know that full well.  Liam's frame was not hidden from you when he was made in the secret place.  When he was woven together in the depths of the earth, your eyes saw Liam's unformed body.  All the days ordained for him were written in your book before one of them came to be.  Psalm 139:13-16

Speech Unprompted

Wesley's greatest struggle has always been with speech.  In the past few months we have watched him become more and more frustrated at his lack of ability to communicate with us.  His feeding therapist, speech therapist, and developmental therapist have all jumped in to help, working extra hard to help him to initiate communication with us, whether that be grabbing a picture card to show us what he wants, signing, or making his requests verbally.

The biggest thing we are working on is helping him to realize that he can choose to initiate communication rather than express his frustration by angrily throwing his glasses and screaming until we give him verbal cues to tell us what he wants.  At the prompting of Wesley's therapists, we have created more picture cards of all of his preferred items.  Now, whenever he shows signs of being frustrated and unable to tell us what he wants, rather than verbally cueing him to tell us what he wants, we have started bringing him over to the picture board and showing it to him.  Once he has made a selection from the board, we praise him for telling us what he wants and then encourage him to verbally tell us what it is that he wants as well.  We have been told that visual prompts are easier to remove long term than verbal prompts, so we are hoping that with time he will make his way over to the picture board himself to bring us a picture of what he wants rather than requiring us to lead him to it to make a selection.  With time, we are praying that this will also lead to him realizing he can just use the words themselves to tell us what he wants rather than going to get a picture.

We have already seen a bit of improvement this week.  Once or twice a day he will go to the board on his own initiative and bring us a picture of what he wants.  As well, he has started coming up to us, taking our hand, and saying "up", which is his word for "help".  He then drags us to what it is that he wants.  Of course, his patience is very limited, so this big pregnant mama is struggling to jump up and follow him fast enough, especially when I only have one hand with which to get up while he is pulling at my other one!

As well, Wesley's feeding therapist has spent a lot of time working with him to say "I want..." before saying the item that he wants.  He still needs verbal prompting for this, but with the prompting, he points to his eye and says "I".  Then he puts his hand over his mouth and says "wa".  After this, he tells us what he wants and then gives us a huge smile.  We are hoping that with time we will be able to give him just the visual cues of pointing to our eye and then putting our hand over our mouth to encourage him to say "I want...".

While I have been encouraged by the strides Wesley has taken the past two weeks, it is still disheartening to see him get so angry when he is struggling to tell us what he wants.  And now that he is older and more aware of how hard it is to communicate, often he just resorts to getting angry first rather than trying.

This morning I brought Wesley back in to meet with a therapist in the Assistive Technology department at our therapy clinic, praying that God would give her wisdom and insight into how we might be able to help him.  I expected a few ideas here or there that might or might not work about how to better use the pictures to communicate.  Instead, she brought out a communication device which spoke the words as Wesley pushed the picture buttons.  I was completely and utterly amazed as I watched Wesley work with her.  He LOVED pushing the buttons and quickly figured out how to communicate what he wanted with the therapist. She even put "I" and "want" buttons onto the device using Boardmaker pictures, and for the first time he seemed to understand the abstract pictures rather than needing digital pictures.  She explained that the missing piece for him was hearing the word spoken when he made his selections.

After working with her for five minutes or so, Wesley was able to push three buttons in a row to say "I want fish".  The best part about it was that after he pushed each button, he would attempt to say the word before moving on to push the next button.  So he was able to both initiate conversation about what he wanted and also verbally express what he wanted without any verbal cues from us.  It was so much fun to him that he willingly gave up his favorite fish multiple times so that he could push the buttons again to request that we give it back to him.  The therapist will be writing up a request to Early Intervention that this communication device is a necessary component to Wesley's communication and should be provided to him.  Please join us in praying that the paperwork will go through and be approved by the state before he ages out of the program in four months.  Otherwise we will have to start all over again and request that the school provide him with this device.

The therapist today also showed me several pieces of software that we can use with the touchscreen on our computer to help teach concepts to Wesley.  She demonstrated how to create an activity using one of the programs to show Wesley two items at a time and have him choose the correct one.  I was amazed at how many abstract objects he knew, as he correctly chose the item requested every time.  The therapist will also be requesting that the state provide us with this software, but even if they don't, it is well worth the $150 for us to invest in purchasing it.  Wesley loves doing activities on the computer with the touchscreen, and this would provide us with a way to teach him colors, shapes, letters, numbers, animals, and all kinds of other things on the computer in a manner that he would really enjoy.

I know it will be several months before we receive any technology from today's meeting, but I left encouraged and filled with hope for the future.  I am so thankful for the amazing blessing of assistive technology and that God has continued to provide Wesley with so many tools that have helped him immensely over the past two and a half years.  I can't thank God enough for blessing us with wonderful therapists and a very helpful coordinator with Early Intervention who have sought to provide Wesley with the best services and tools possible for him to succeed to the best of his abilities.

Fall Festivities

This fall has been particularly enjoyable, since for the first time, both Zach AND Wesley have participated in the fall festivities.  We have enjoyed including Wesley in our family activities and watching his excitement as he experiences them for the first time.

When Mike and Zach carved pumpkins, Wesley was right there with the spoon ready to help scoop out the insides.  He was fascinated by the process and thoroughly enjoyed taking the tops on and off of the pumpkins.  Of course the highlight for him was when we put candles inside and lit them.  The glow of the candlelight was just mesmerizing to him!

We enjoyed trick-or-treating as a family this year too.  I brought the boys over to the outlet mall near our house before Mike came home, and they loved going into each store and getting candy.  After a while Wesley became a bit frustrated at the prospect of receiving candy only to watch it be placed into his bag for a later time.  So, he enjoyed a lollipop while Zach skipped along in front of the stroller excitedly looking for the stores participating in the event.  Once Mike came home, we enjoyed trick-or-treating as a family on our street, and Wesley was thrilled to walk up to each door and reach into the bowl to pick out a treat.  He was a bit confused, though, as to why he couldn't then enter each house and make himself at home.

After Halloween, we began preparing for Thanksgiving.  Wesley LOVES crafts, so his occupational therapist helped him make a turkey this year.  It is such a joy to watch the look of concentration and complete satisfaction on his face when he is squeezing a glue bottle or pressing items together with glue.  So when his OT used autumn leaves for the turkey's feathers and Wesley was able to glue them onto his turkey, he was completely delighted.

Zach also enjoyed creating turkey crafts at school and dressing as a Pilgrim for his class's Pilgrim party.  He proudly wore his costume at school, and was even more excited that God provided an opportunity for me to help out in his class.  Throughout the morning I would catch him looking over at me and smiling, so happy that I was there to share this event with him.  He has so much fun at school and does such an excellent job there, and I was thankful that God gave me this time to be with him and enjoy this part of his life with him before the baby is born.

One thing I am particularly thankful for this season is how much God has worked in Wesley's life and Zach's heart, that we are now able to enjoy activities as a family.  It warms my heart to see Wesley come over to Zach, watch him closely, and then push his way in for a turn at whatever activity Zach is engaged in.  What joy it brings me to see my boys trick-or-treating together and hear Zach informing people "I'm getting Smarties for my brother, because those are his favorite!".  I love watching the expressions on Wesley's face as he concentrates, trying to understand what is going on and how he might be able to participate.

As I watch my boys together, I thank God for blessing me with such a wonderful family.

Leaves, Leaves & More Leaves

With eight trees in our yard, we usually fill up at least 30 lawn bags of leaves every fall.  This year has been no exception.  The difference is that now Mike has a little helper.  At five years old, Zach does a great job of helping rake and stuff the leaf bags.  Wesley mainly enjoys running through the piles of leaves and scattering them once Mike and Zach have worked hard to gather them together.

Of course, Zach is pretty good at helping Wesley scatter the leaves too!

As noted in the picture above, Wesley would much prefer to run through the edges of the leaf pile than end up in the middle of it.  He still loses his balance quite a bit, which means that he falls over every time he runs into too deep a pile of leaves.  And he is definitely not a fan of falling face first in the leaves!

As long as we help him, though, Wesley enjoys exploring all the new textures!

He even comes back for more fun!  I love the look of delight in his eyes as he sees the huge leaf pile in front of him.

Five Years

Dear Zach,

I promise, I haven't forgotten your birthday.  How could I ever forget about the birth of my firstborn son?  Things have been crazy around here as I work through pages of to-do lists to get ready for the birth of your brother, and somehow my birthday letter to you was pushed down to page two on one of those lists.  Please forgive me for my tardiness!  When you're my age and have kids of your own, maybe you'll understand.  On the other hand, as it seems that you have your father's gift for timeliness, maybe you'll just need the gift of understanding others in their weakness.

Zach, every time I look at you, I am amazed at how quickly the past five years have gone by. How can it be that just five years ago I was holding a newborn baby in my arms for the first time and trying to figure out what being a mom was all about?  Now I look into your eyes and see a boy who is so very grown up.

I love our conversations together, when you talk about your day at school or your interactions with others.  You still see the world in black and white, and sometimes it is hard to not laugh as you use words such as "steal" and "lie" for activities that would better be characterized as accidentally taking something and intending to return it or misunderstandings between two individuals.

Your vocabulary is growing by leaps and bounds, and I am amazed at your logic skills at such a young age.  Your ability to distinguish between specific word choices based on their precise meanings reminds me very much of your father.  I can tell that by the time you are a teenager I will just have to acknowledge the fact that you are smarter than me and able to use reasoning skills far surpassing my own to explain why my instructions to you are not correct or accurate.  Despite this, God will still call you to honor your mother.

Since Wesley joined you in your room, it has been a delight to watch you quietly come out every morning at six-thirty to read your Bible story books in our closet.  It amazes me that you are able to read every word by yourself and then discuss what you read with me.  This morning, after reading about Solomon's wives worshiping idols, you were quick to tell me that at one time Solomon loved and followed God but then over time his heart became proud.  I pray that as you continue to read about God and His word, that God will gently but firmly draw you to Himself and a saving knowledge of His Son Jesus.

You have never had a huge interest in music, but just recently I have heard you singing both songs you've heard and also songs you make up on the spot.  It was music to my ears last week when I heard you singing a song about how Jesus did not want to die on the cross but He did it anyway because He loves us so much.  Oh how I pray that God will cause these words to sink deep into your soul and that you will grasp the depth of God's love for you as expressed by the death of His Son for your sins.

As Wesley has grown older, it has been a joy to watch how you have taken him under your wing.  Your patient voice as you teach him his shapes or help him with a puzzle is just precious to watch.  I love listening as you play with him and encourage him to try new things.  And at night, as you are supposed to be sleeping, it is difficult to drag myself into your room to ask you to be quiet when I hear you practicing sounds with him and encouraging him to imitate you.  When I hear the two of you laughing together, it is music to my ears.  As I think about it, it is so very evident that God perfectly placed both of you into our family.  You are the perfect big brother for Wesley.  You are patient with him but yet faithful to keep encouraging him and reminding him to do what is right.  I am often grateful for your black and white perspective on things when you remind me that Wesley is licking something or engaging in a behavior we are seeking to curtail.  Many times I am tired and would prefer to just ignore Wesley's behavior for a minute or two, but your faithfulness to point it out and remind me that he is "NEVER allowed to do that" is very helpful.

One of my favorite things to watch you do these days is build with your LEGOs.  You love to follow instructions, and your new favorite thing to do is pull out a set of LEGOs, grab the instructions, and follow them exactly until you have completed what it is that you are building.  Truly, I am amazed at your ability to follow the instructions without messing anything up.  And I love seeing your huge smile as you show me what you have built.  It is fun to see you succeeding at something that you love so much but that is also challenging to you.  And I am so proud of you for working hard at building things rather than getting frustrated and angry when things aren't going right.  I know that is just another sign that you are growing up.

I love you so much Zach, and I am looking forward to enjoying this next year with you.  You are becoming my companion, and I am praying that together we will enjoy year five tremendously!

Love,
Mom

The Least of These

With baby #3's impending arrival, it has been easy to focus on the new addition to our family and forget about the burden for orphans with special needs that God has placed on my heart.  But in the past week, God has used several blog posts to overwhelmingly remind me of the plight of orphans with special needs around the world.  Just today I watched a video about older boys in Eastern Europe, most of whom cannot speak or even walk, who have been neglected for far too long.  As I watched this video, I melted into tears for the second time in as many days as I thought of my dear Wesley.  My adorable and delightful son who is God's precious gift to our family could easily be one of those boys someday if he had been born in a different part of the world.

Speaking is such an incredible struggle for him that I could easily picture him never speaking without significant intervention.  Without the numerous hours we have invested in feeding therapy, it is very likely that he would be unable to eat solid foods.  If he were in an orphanage right now, he would be a non-verbal boy transferred to a mental institution at the age of five to live out the rest of his life alone.  He would spend far too many hours of each day just lying in a crib and staring up at the ceiling - lost and forgotten; forsaken by the rest of the world.

As I imagine my son, whom I love with my whole heart, enduring such horrific conditions, my heart breaks for the countless children who will live out the rest of their lives in these very situations.  I think of the joy that Wesley exudes and the delight that he brings to all those around him, and then I realize that because of sin and depravity in this world, countless other boys and girls like him will never be given the opportunity to enjoy life and bring joy to those around them.  Because they are not seen as created in the image of God, they are instead given just a shell of a life as if they are unworthy of being honored as creations of a holy and righteous and loving God.

In truth, Wesley, and all people who have any sort of disability, were created by God's sovereign hand and are infinitely loved by Him.  Therefore, how we treat them, both through our action and inaction, clearly shows whether or not we believe God's word to be true and whether or not we value what He values.  More than that, how we treat the least of these is directly related to our love for our Savior.  For Jesus Himself says in Matthew 25 that as we do (or do not do) to the least of these, so we also do to Him.

When we face Jesus on the last day, may we all be able to say, "when I saw people with disabilities, I saw them as created in Your image.  I loved them and I reached out to them and cared for them, for in them I saw the face of God."

F is for Fish

The past two days I have seen a whole different side of Wesley.  While reading a book to Wesley yesterday morning, we came to a page with a fish on it.  Wesley immediately climbed out of his cube chair, ran to the other room, threw all the toys out of his toy box, and came back with a little blue plastic fish he had received as a prize from the dentist a few weeks back.  I didn't even realize he knew this fish existed, much less that he was able to make the connection that it was a fish, just like the fish in the book.

For the rest of the day yesterday (and continuing into this morning), Wesley would run up to me every five minutes or so, tug on my arm, show me his fish, and say "fff".  When I responded with, "Yes, Wesley, that is a fish!", he would give me a huge smile, say "fff" several more times, and run off to play again.  Other times, he would run up to me, put his arms in the air for me to pick him up, say "up" after a verbal prompt, and once in my arms show me his fish so that we could say "fish" (or "fff") back and forth a few times before he would squirm back down again.

Watching Wesley's joyous grin and seeing the twinkle in his eye as he would exuberantly run up to me to tell me about his fish has been delightful.  How I pray that this is the beginning of him seeking to initiate verbal communication with us rather than just speaking words when prompted.  Maybe as he realizes how much fun it is to tell Mama about his fish, it will click with him that he can tell me about other things too.

Please join us in praying that this will be the case!

Autumn Memories

Our family has always enjoyed Saturday outings the Fall.  We love to go to parks, play in the leaves, throw sticks and pine cones over bridges and watch them float down the river, chase squirrels, and go for long walks.  Of course Wesley also loves water and desperately tries to climb out of his stroller to play in the fountains even though the weather has turned chilly.

This slide thing is lots of fun now that I've got the hang of it!

Did you see that Dad?  I chased the squirrel right up into that tree!

 Watching sticks float down the river (or in Wesley's case, just watching the rippling water)

This kid has quite a sense of humor.  He's always making us laugh these days.

Must. Get. That. Water.

I just love his delightful smile!

Brothers having fun together.

Wesley peacefully stood on the water's edge for quite a while with Daddy and just took in the scenery.

Meanwhile, Zach was busy saving the world!

Our recent Saturday outings have been such delightful family times.  I have enjoyed watching our boys play together and investigate God's creation.  Even more than that, it has been a joy to see their unique and very different personalities and yet watch how well they play together and how much they enjoy being with each other.  God's perfect plan is so evident in how He created them and placed them each into our family at the perfect time.  They are wonderful companions and are both so good for each other.  I look forward to seeing how our third little guy will fit in and complete the puzzle.

Shapes & Colors

Recently I have been discouraged with Wesley's development, finding myself comparing him to other children with special needs and then concluding in my mind that he is lagging behind.  For example, when I read about children with Down syndrome who head off to preschool already knowing their letters, numbers and colors, it is easy to sit there and think, "Wow! I'm not even sure Wesley will know these things by the time he goes to kindergarten".

Wesley's sensory issues and struggles with motor planning have played a huge part in his delays in other areas. He still struggles to sit still and concentrate for longer than a few minutes at a time, and it is very difficult for him to learn motor plans for vocalizing sounds and forming hand movements, which has led to delayed communication.

Because we have been working so much to help Wesley regulate his body and communicate his basic needs, working on things like letters, colors, numbers and shapes have fallen by the wayside.  I just started labeling shapes for Wesley a few months ago, and we only added color labeling into the mix of activities in the past two weeks.

 

Knowing how long it has taken Wesley to learn new things in the past, I fully expected to continue to work on shapes and colors for months if not years before seeing him really begin to pick up on these concepts.  So when I pulled out Wesley's shape sorter and pegboard yesterday to work with him, my expectations were quite low.  Much to my surprise, when I gave him a choice of two shapes, 3 out of 4 times he chose the correct one.  He made excellent eye contact, closely examining each shape before making his choices, so I knew his correct choices were not accidental.  Then, when we moved on to colors, he again chose the correct color 3 out of 4 times when I gave him a choice of two colors.  I kept giving him color choices, using two pegboard pieces that were different colors but the same shape, thinking that surely he hadn't learned his colors this well after only a few weeks.  Each time I gave him a choice, he only confirmed that indeed he did know which color to choose.

As we were working on colors, Daddy walked in the door from work, and just to confirm that this was no fluke, Wesley showed off his new color identification skills to Daddy too.  To say that we were astounded would be an understatement.  In fact, Daddy had no idea that Wesley even had the concept of color matching, much less color identification.

I was grateful for the reminder from the Lord that He is indeed at work in Wesley's life.  Just because Wesley is struggling to communicate does not mean that he is not learning.  The fact that he is learning his colors and shapes so quickly shows that his receptive language is developing quite well.

On top of this, over the past few days Wesley has been trying to imitate words more often.  He still has very few consonants and not all of his vowels, and he attempts to speak on inhalation rather than exhalation, so we have a long way to go with working on airflow.  But he is TRYING, and that is a huge step when the motor plan for speaking is so very difficult for him.

Wesley, your Mama and Daddy are so very proud of you!  You continue to amaze us with all that you are learning and doing.  We can't thank God enough for blessing us with such a wonderful son!

"For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them."
Psalm 139:13-16