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.