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

Our Faithful God

"And David said in his heart, I shall now perish one day by the hand of Saul."  1 Samuel 27:1

The thought of David's heart at this time was a false thought, because he certainly had no ground for thinking that God's anointing him by Samuel was intended to be left as an empty unmeaning act. On no one occasion had the Lord deserted His servant; he had been placed in perilous positions very often, but not one instance had occurred in which divine interposition had not delivered him. The trials to which he had been exposed had been varied; they had not assumed one form only, but many—yet in every case He who sent the trial had also graciously ordained a way of escape. David could not put his finger upon any entry in his diary, and say of it, "Here is evidence that the Lord will forsake me," for the entire tenor of his past life proved the very reverse. He should have argued from what God had done for him, that God would be his defender still. But is it not just in the same way that we doubt God's help? Is it not mistrust without a cause? Have we ever had the shadow of a reason to doubt our Father's goodness? Have not His lovingkindnesses been marvelous? Has He once failed to justify our trust? Ah, no! our God has not left us at any time. We have had dark nights, but the star of love has shone forth amid the blackness; we have been in stern conflicts, but over our head He has held aloft the shield of our defense. We have gone through many trials, but never to our detriment, always to our advantage; and the conclusion from our past experience is, that He who has been with us in six troubles, will not forsake us in the seventh. What we have known of our faithful God, proves that He will keep us to the end. Let us not, then, reason contrary to evidence.

Charles Spurgeon, Morning & Evening, October 17

This quote has been very helpful to my soul as we are beginning the process of transitioning Wesley to preschool.  Up until now, we have never had a shadow of a reason to doubt God's goodness toward us or toward Wesley.  His lovingkindnesses toward Wesley truly have been marvelous.  He has not once failed to justify our trust!  So now we can trust that He who has been faithful and has been with us up until now will not forsake us as Wesley heads off to school.  He will keep us to the end!

Remembering

About a year ago, when I brought Wesley in to see his GI specialist, I asked on a whim if he knew of a feeding therapist who might be able to help my sweet boy.  At the time, Wesley was only eating baby food, and we were desperate to find someone who could help him. Much to my surprise, Wesley's doctor DID have a therapist that he highly recommended.  He warned me, though, that it was unlikely that I would be able to get in to see her.

I called the clinic where she worked and found out that, as Wesley's doctor had thought, she had no openings.  But, she did still have availability for evaluations.  Since Wesley had just received an annual feeding evaluation with Early Intervention, we went ahead and set everything up for the evaluation to be billed to our private insurance (which, praise the Lord, covered feeding evaluations!)

During Wesley's evaluation, the feeding therapist commented multiple times on his struggles with swallowing and the many issues he had with his tongue movements.  She ruefully stated that it was too bad we hadn't come much sooner, since now it would be necessary to correct many things that could have been taught properly the first time.  As she finished up his evaluation, she told me that with a lot of work she could have him eating everything before he aged out of Early Intervention.  When I asked about her full schedule, she said that it was very important that these things be addressed right away, and that she wanted to personally take him on as a client and help him.

As we left her office, I was struck by two things - both the seriousness of the situation that she would be so quick to make a way to fit Wesley into her schedule and start seeing him immediately, and the fact that God had so wondrously provided for Wesley's needs even when we didn't think it was possible.

Fast forward to a year later, Wesley saw his GI specialist again this month.  Much to my surprise, he remembered our conversation from a year ago and asked about how Wesley was progressing with feeding.  As I recounted our story and thanked him for recommending this therapist, he expressed surprise both that Wesley was able to receive services from her and that his accomplishments with feeding were so significant.  I had to fight back tears as I so clearly saw the hand of God on Wesley's life, providing abundantly for him.  God has blessed Wesley with a wonderful GI specialist, who has not only treated him with great skill and wisdom over the past two and half years, but also took a personal interest in him and sought to help him with his feeding issues.  Then God provided us with a spectacular feeding therapist with a heart to help my struggling boy, whose skills He has used to do a radical work in Wesley.  The fact that Wesley is now able to eat most things and is accepting of new foods is truly a magnificent transformation.

I am so grateful for this reminder of how God is mightily at work in my little guy's life.  God truly does love Wesley and is faithful to provide for all of his needs.

"I will give thanks to the Lord with my whole heart; I will recount all of your wonderful deeds." Psalm 9:1

It's That Time of Year

It's football season again, and around here that means I hear lots of boys yelling "Go Patriots!"  Even Wesley enjoys watching the games.

The Works of God Displayed

The Sunday after I wrote this post, our pastor Tab Trainor preached an excellent follow-up message on John 9:1-7.  I have wanted to write a post on it since first hearing it but have struggled with how best to articulate my thoughts.  At this point, it seems most appropriate to start by explaining why it was particularly fitting and especially meaningful to me to hear this message preached by Tab.

Tab is a man who truly loves the people of God.  God has given him a heart for each and every person in the flock that he has been called to care for.  In fact, it would take multiple blog posts for me to mention the countless times that Tab has personally reached out to and lovingly cared for Mike and I over the past thirteen years.  He has been intimately acquainted with our struggles over the years and has faithfully walked alongside us through thick and thin.

Due to the growth of our church over the past five years, we had less contact with Tab and his family for a while.  So when Wesley was born, I was not expecting the extent of the care that we received from Tab.  Because of his affection for those in his care, Tab remembers what they are walking through and is faithful to follow-up.  For the past two-and-a-half years, I cannot remember a month where Tab did not find me at least one Sunday and ask how we were doing and how Wesley was doing.  And he never asks it as a perfunctory question.  He wants to know.  He wants to hear the details so that he can know how best to pray for and care for the people that he loves so much.  Many Sundays Tab has also laid hands on Wesley and prayed specifically for requests that we have shared.

While I know that most pastors love and pray for those in their congregations, I truly believe that God has given Tab a gift of grieving with those who grieve, lovingly caring for those who are walking through difficult seasons, encouraging the fainthearted, and helping the weak. Several years after Wesley's birth, while most people have moved on, Tab continues to regularly ask us specific questions about how we are doing and how he and our church can better walk alongside us.  He asks about Wesley's development, struggles, and successes.  But more importantly, he asks about how Zach is responding to the extra time we spend with Wesley.  He asks about how we are doing in our marriage.  He seeks to understand how disability might affect our family in ways that others might not be aware of.  He asks about our walks with the Lord - if we are trusting Him and believing His goodness and faithfulness toward us.  And then he asks how he personally and the church as a whole can better seek to serve our family.  Every time Mike and I interact with Tab, I sense God's pleasure as I see Tab's genuine love for Wesley, one of the least of these, and for the family to whom God has entrusted him.

So in August when Tab started his message by asking "How do I interpret my sufferings and hardships and difficulties?", I heard this question as coming from a man who deeply cares for those in his congregation and longs for each person in his flock to interpret their struggles through the lens of the cross.

Tab went on to say that what Jesus says in John 9:3 also applies to our own suffering.  Along with the blind man, we suffer that the works of God might also be displayed in us.

Tab reminded us that God does not want us enduring trials with a vague sense of condemnation, thinking that God must be displeased with us.  The God of the Bible is not a god of karma who is out to get us.  Our trials have a purpose - they are not meaningless.  For instead of having a god of karma, we have a God who loves us.  Does this mean that we will be healed?  Maybe, but not always.  God's works can also be displayed in sustaining us and transforming us through trials or refining and strengthening our faith.

Seeing this truth helps us to take our focus off of the why questions (Why Lord?  Why me?) and instead helps us to ask the how questions (How Lord do You want to be glorified and praised in this?  How do you want me to display Your work on this stage?  How is Your power made perfect in my weakness?)

But in order to do this, we need a Christ-centered trust.  Since Jesus Himself is well acquainted with suffering and grief, He can relate to all of our sufferings as a result of His own experience. It is trust in the suffering of Christ that can bring great comfort to the suffering saint.  Because God sent His own Son to take the punishment for our sins and suffer in our place, we can now trust that God will work out all of our circumstances for our good and His glory.

"Behold, we consider those blessed who remained steadfast.  You have heard of the steadfastness of Job, and you have seen the purpose of the Lord, how the Lord is compassionate and merciful."  James 5:11

Joyful Suffering for Jesus

He did not die to make this life easy for us or prosperous. He died to remove every obstacle to our everlasting joy in making much of him. And he calls us to follow him in his sufferings because this life of joyful suffering for Jesus’ sake (Matt. 5:12) shows that he is more valuable than all the earthly rewards that the world lives for (Matt. 13:44; 6:19-20). If you follow Jesus only because he makes life easy now, it will look to the world as though you really love what they love, and Jesus just happens to provide it for you. But if you suffer with Jesus in the pathway of love because he is your supreme treasure, then it will be apparent to the world that your heart is set on a different fortune than theirs. This is why Jesus demands that we deny ourselves and take up our cross and follow him.

John Piper, What Jesus Demands from the World, p. 71

All By Myself!

Today is a record breaking day at our house.  Wesley ate his breakfast and lunch ALL BY HIMSELF!!!  For breakfast he gobbled up Golden Grahams and half of a sliced banana.  (I say gobbled.  Actually, he painstakingly picked up each piece of food individually and took his sweet time finishing his breakfast.  I think it probably took him 45 minutes to eat.  Gobbled is only accurate in that he was attentive to his food and actively seeking to get it into his mouth the entire time.)  He even surprised me by doing his very best to use his pincer grasp when eating his banana.  Of course at times he had to fall back to the fist grab to get those slimy pieces into his mouth, but overall he did a fantastic job.

Then I decided to test his new found independence by giving him a lunch he could also feed himself - just to see if he would do it.  Sure enough, he happily fed himself a cut up hot dog, grapes, and pretzels.

I am aware that we still have a long way to go before we get a handle on using our utensils properly, but this is a HUGE step for Wesley.  Wesley has been an over-stuffer from the very beginning, and it is only in the past month that we have been able safely give him a bowl of crackers or pretzels without fearing that he would choke himself.  As well as over-stuffing when it comes to crackers, Wesley has also been uninterested in self-feeding anything else.  So for now, if Wesley wants to eat his meals one bite at a time using his fingers, I will happily oblige.

I must also state that this is a big answer to prayer.  I have been praying since we found out we were expecting another baby that Wesley would be willing and able to self-feed by the time the baby was born.  It seemed an overwhelming task to prepare meals for everyone and care for and nurse the baby while also feeding Wesley every single bite of every single meal.

Join me in thanking the Lord for doing a work in Wesley's body and mind, both enabling him to self-feed and giving him the desire to do so!  He has reminded me again today that He does hear each and every one of my prayers, and He answers them in His perfect timing.

The Perfect Snack

It looks like we've found the perfect snack.

Not only does Wesley love Goldfish, but he actually enjoys practicing his pincer grasp as he reaches into the bag and pulls out the fishies one at a time.

I am very impressed with his lack of greed.  He never comes out with a handful, preferring instead to concentrate carefully on getting just one.

Of course, this doesn't mean that he couldn't polish off an entire bag in one sitting.  In fact, given the opportunity, he'd be delighted!

Displaying God's Grace

As I mentioned in my last post, Wesley has become quite demanding in the past few weeks. In addition to his demands, he has increasingly expressed his frustration with being re-directed or told "no" by hitting us in the face, pulling our hair, or throwing his glasses.

Last Friday I reached the bottom of my rope.  During a difficult experience in a store that afternoon, Wesley expressed his displeasure with being held by repeatedly hitting me in the face and pulling my hair out of its hairband.  When we left, I set Wesley down to hold my hand as we walked to the car.  I was aware that he was not happy with the situation by the way that he was throwing himself around as we walked.  But with the distractions of watching for cars and talking with Zach, I was not cognizant of how he chose to express his anger until we reached the car.  As I lifted him into his carseat, I immediately took note of what was missing - his glasses!  Grumbling filled my heart as I pulled Wesley back out of his carseat and grabbed Zach's hand so we could make our way back across the parking lot in search of the missing accessory.  At the other end of the lot, dollar signs immediately crossed my mind as I saw his frames bent in multiple directions and one of his lenses awkwardly sitting nearby.

At this moment, I was amazed at how quickly anger at my child could rise up in my heart.  In truth, it had been rising since he was ripping my hair out minutes before, but at this second, my anger toward Wesley boiled over.  I am ashamed to say that as I collected the pieces, I yelled at my precious son, harshly reminding him to NEVER throw his glasses. The look of shock and fear in his eyes will haunt me forever.  Then I marched the boys back to the car and stormily buckled Wesley back into his seat.

As I closed my door and started the car, the Lord began to nudge my heart.  He reminded me of the countless times that I have sinned against Him, and how it is only because of His grace that I have not been utterly destroyed by the wrath of God that I fully and completely deserve. Because of Jesus, all I have known is grace.  And because of Jesus, I ought to bestow upon my son the same grace that has been shown to me.  Instead of responding to my son's disobedience and anger by yelling at him, I have the opportunity to show my son a picture of who God is through Jesus by responding to him in a way that he does not deserve.  By showing him grace, I am reflecting my Savior and the grace given to me at the cross where Jesus atoned for each and every one of my sins.

Yes, Wesley disobeyed me when he threw his glasses, and yes, he needs a mom who will faithfully train and discipline him in the way of righteousness.  But I pray that God will also help me to be a mom who responds graciously to his sin and displays for him the grace of God as shown at the cross of Jesus.  May he see Jesus when he looks at me, and may God use that in his heart to lead him to repentance.

For all have sinned and fall short of the glory of God, and are justified by his grace as a gift, through the redemption that is in Christ Jesus." Romans 3:23-24

Asking With Confidence

Wesley may already be two-and-a-half, but in the past month he has officially entered the terrible twos.  Wow!  This child has a will!  He knows what he wants, and he is quite demanding that everyone cater to his every wish.  More than that, he NEVER forgets.  No matter how many times we attempt to distract him from something he cannot have, he keeps going back and requesting it.

In the midst of this, Mike has reminded me that Wesley is the perfect picture of how we should bring our requests to God.  Wesley comes to us fully expecting that we will provide for all of his needs and wants.  He doesn't timidly make his requests, expecting the answer to be no, and he never gives up asking.  If our response is "no", or "first this, and then you may have it", he will keep pulling at our hands and saying "dits" (this) until he gets what he wants.  Wesley knows that we are his parents, and he fully trusts us to give him all good things.  There is no doubt in his mind that if he asks, he will receive.

Isn't this exactly how we should make our requests known to the Lord?  We ought to approach the throne of grace with confidence, making our requests known to God and believing that He will never withhold any good thing from His children.  Just as we love our children, so God also loves us with a steadfast love that is beyond anything we could ever comprehend.  So instead of attempting to walk through our days in our own strength, let us seek the Lord's help throughout our days, asking Him to provide for ALL of our needs, both the great and the small.  For just as Mike and I delight in helping Wesley when he asks us for help, even when his request is a small thing like opening the velcro on a bag, so the Lord also delights in giving His children good gifts.

"If you then, who are evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask him!"  Matthew 7:11