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.