Wednesday, April 27, 2011

My Little Trooper

Roaming the halls before the EEG

It won't be too bad, right Dad?

Fast asleep at noon after screaming for an entire hour while the leads were glued to his head

Playing and hanging out

Ready to eat!

Playing some more...

Free at last!

Welcome home my sweet Wesley!  Zach and I missed you while you were away.  Your antics and laughter have been delightful today.  It is quite apparent that you are loving your freedom.

Tuesday, April 26, 2011

Just the Two of Us

The last two days, while Mike and Wesley have been cooped up in a hospital room experiencing the joys of a 48 hour EEG, Zach and I have had a delightful time together.  I have loved spending every waking moment with my big boy.  It has been fun to be reminded of how funny and exuberant he is.  He can fill every moment of every day with conversation without hardly taking time to breathe.

We've started each morning with him climbing into my bed and having me read to him from his devotional book. It's amazing how much you can read and talk about when you're not pressed for time.  Then yesterday we went to the children's museum and then out for lunch.  I loved watching Zach run around and use his imagination.  It was such a joy to let him lead the way and not constantly have to tell him to stay with Mommy.  We had a blast building together with magnetic shapes and playing in the space shuttle.  He even persuaded me to come into the workshop and help him build a car out of wood and nails.  I'm not sure Mike will be very impressed with my construction, but at least Zach didn't notice its poor craftsmanship.  He was just thrilled to talk with me while we were working.

Zach has also grabbed hold of the opportunity to work through his "school books" the past few days.  He finished up his enormous Preschool workbook the other day so Mike went out and bought him a Kindergarten workbook to take it's place.  I don't think I am exaggerating when I say that he has completed at least fifty pages in his workbook in the past two days. He loves to learn, and anything that includes logic of some kind is right up his alley.  Yesterday he was hard at work completing subtraction problems, and today he surprised me with his rhyming skills.  He has so much fun talking through each page with me and learning each new concept.

As today comes to a close, I am looking forward to having Wesley home again tomorrow. But I will very much miss the extra time with my big boy.  As much as Wesley is an enormous blessing and a wonderful little brother, I am much more aware after today of how much of my time he requires.  Zach really does receive the the left over bits and pieces of my day after I have finished caring for his little brother.  I am praying that God will help me to find a way to restructure my days so that Zach and I can have more fun times together - just the two of us.

Friday, April 22, 2011

Ah, Holy Jesus, How Hast Thou Offended

Ah, holy Jesus, how hast Thou offended,
That man to judge Thee hath in hate pretended?
By foes derided, by Thine own rejected,
O most afflicted.

Who was the guilty?  Who brought this upon Thee?
Alas, my treason, Jesus, hath undone Thee.
'Twas I, Lord Jesus, I it was denied Thee!
I crucified Thee.

Lo, the Good Shepherd for the sheep is offered;
The slave hath sinned, and the Son hath suffered;
For man's atonement, while he nothing heedeth,
God intercedeth.

For me, kind Jesus, was Thine incarnation,
Thy mortal sorrow, and Thy life's oblation;
Thy death of anguish and Thy bitter passion,
For my salvation.

Therefore, kind Jesus, since I cannot pay Thee,
I do adore Thee, and will ever pray Thee,
Think on Thy pity and Thy love unswerving,
Not my deserving.

Monday, April 18, 2011

Directed Steps

"A man's heart plans his way, but the Lord directs his steps."  Proverbs 16:9

The last few weeks have not gone according to plan.  At every turn, Mike and I have found new surprises and received bad medical reports.  In our hearts, we had planned out our lives and the lives of our children very differently than what it seems may come to pass.  But we cling to the promise that it is the Lord who is directing our steps.  As it says in Psalm 54:4, the Lord is our helper, and He is the upholder of our lives.  There is no place that we would rather be, and no place that we would rather our children be, than in the Lord's hands, upheld by the same God who created us and sent His Son to save us.

"Have I not commanded you?  Be strong and courageous.  Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go."  Joshua 1:9

As we walk through this season of things that truly are frightening, we are grateful for these words from the Lord reminding us that we have no need to fear our frightening circumstances, for the Lord our God is with us.  He will never leave us or forsake us.  He will not forsake our children.  He will be with us wherever we go.  Because of this, we can walk courageously forward and face the future that the Lord has ordained for us.

Wednesday, April 13, 2011

He Will Keep Us At Ease

"If we are haunted by God, nothing else can get in, no cares, no tribulation, no anxieties. We see now why Our Lord so emphasized the sin of worry. How can we dare be so utterly unbelieving when God is round about us? To be haunted by God is to have an effective barricade against all the onslaughts of the enemy.

'His soul shall dwell at ease.' In tribulation, misunderstanding, slander, in the midst of all these things, if our life is hid with Christ in God, He will keep us at ease. We rob ourselves of the marvelous revelation of this abiding companionship of God. “God is our Refuge” — nothing can come through that shelter."

Oswald Chambers, My Utmost For His Highest, June 2 meditation

Monday, April 11, 2011

Happy Birthday Wesley

Dear Wesley,

It is hard for me to believe that you are already two years old.  It seems like just yesterday you were a baby, and now you are so big.  When I dress you in the clothes your big brother wore to the hospital to visit you when you were born, I am reminded of just how much you have grown up.  How can it be?  How can my baby be a big boy now?

Wesley, I can't even begin to tell you how God has used you to change my heart.  As I look back at the past two years, all I see is joy.  Despite all the tears I have cried, the struggles with feeding you, the fears as we faced your medical issues, and your multiple surgeries and other procedures, my view of these past two years is tinted with a rosy shade.  I remember the joys of watching each little thing you learned to do.  I think of all the times my heart has burst with pride as you have persevered to master something new.  When I picture your face, I always see you laughing back at me with delight.

God has used you, my dear son, to teach me what it truly means to trust God - to trust that He is good and that He does all things well.   In giving you to me, God has helped me to stop striving after what I might imagine a perfect life to be and instead trust His perfect plan for my life - and for yours.  In just two short years, God has already used you in marvelous and wonderful ways in your Mama's life.  I can only imagine the great plans that God has for the rest of your life.  I pray that you will touch the lives of countless people and that they will see Jesus through you.

The other day, as I looked at pictures of you from a year ago, I commented to your Daddy about how delightful you were back then.  That's what you have always been.  Delightful. Your tears are few and far between (when you're feeling well), your determination to learn new things is fierce, and your joy is abundant.  God has truly blessed you with an amazing countenance.  The first thing that anyone ever comments about you is your smile and your laughter.  Your laugh is contagious, and considering that you laugh all the time, laughter is a common sound in our home.

I can't wait to watch this next year unfold.  My heart fills with excitement as I think of the new things you will learn.  I anticipate your smiles and laughter as you learn new words and signs. And oh the joy that will be yours when you master the art of feeding yourself.  I can already see your face as you squeal with delight and wave your fork everywhere.  If only I could preemptively warn the walls of the food that will soon be coming their way.

I love you, my sweet Wesley, and I am honored that God has given me the joy and delight of being your Mama.


"Oh sing to the Lord a new song, for he has done marvelous things!...  Make a joyful noise to the Lord, all the earth; break forth into joyous song and sing praises!  Psalm 98:1, 4

Thursday, April 7, 2011

Always Rejoicing


You are the toughest little guy I know.  This week, instead of enjoying a week of birthday celebrations, your Mommy and Daddy put you through torture day after day.  But instead of complaining, you accepted each new procedure with a smile.  On Tuesday, Mommy woke you up early to drive you into Chicago for an EEG and an appointment with a neurologist. You cheerfully sat in the back seat for over an hour on the drive in and enjoyed laughing with Mommy's friend who came along to keep us company.  When we arrived at the hospital, you marched up and down the halls, yelling at the top of your lungs so that you could enjoy the full effect of your echo.  You were happy to eat your breakfast in the stroller in intervals rather than all at one time in your comfy highchair.  And you loved greeting the other people in the waiting area, running right up to them with a huge smile and making yourself at home with them before Mommy could come and redirect you.

You cheerfully greeted the EEG technician - until she started attaching wires to your head.  You were MAD about that!  Thankfully another kind woman brought in an IPad with an "Itsy Bitsy Spider" app that you loved.  We watched it over and over again as the technician worked quickly to attach all the wires to your head and get your head wrapped.  Once she was finished, you were happy to cuddle with Mommy for the duration of the EEG and watch the bubbles and pictures that were projected on the wall for you.  I was amazed at how quickly you could forget your misery and make the best of the situation you were in.

After your EEG we waited for quite a while before meeting with the neurologist.  You were so patient as we waited.  I was proud of you for keeping a smile on your face instead of getting irritable.  Then when we met with the neurologist, you laughed as he checked you out rather than fighting him as you do most doctors.  Despite the bad news he gave to Mommy that you indeed did have a seizure and may have more, you were quite content to munch away on your veggie straws, unconcerned with what he was saying.  Sometimes your Mommy forgets, but you know that it is the Lord who sustains your life.

Then on Wednesday morning, Mommy and Daddy woke you up early for a second day in a row to bring you to the hospital for your surgery.  After having had nothing to eat or drink since eight o'clock the night before, you proceeded to wait for two and a half hours at the hospital before you were taken back for surgery.  During that time, you were unfazed.  You wandered through the halls in your cute little blue gown and orange footies and cheerfully greeted everyone you saw.  You were a light in a gloomy place, and you put a smile on everyone's faces.  You loved the hospital lights and the spinning doctor's chairs and spent long periods of time talking to them.  How you were able to entertain yourself so easily when your stomach must have been eating you alive is beyond me.  God has definitely given you an extra measure of grace my dear child.  Your patience and happiness despite discomfort far exceed my own.

When the anesthesiologist resident came to take you away, you willingly leaned into his arms and let him lift you up from Mommy.  While it was hard for us to let you go, we knew you were in good hands.  The surgical team and anesthesia team you were with are some of the best. And even more importantly, your heavenly Father who upholds your life was watching over you and guiding the surgeon's hands.

One short hour later, we were called back to meet you when you were brought out of surgery. I almost laughed as I watched four nurses surrounding you as they attempted to protect you from banging your head against the sides of your crib as you tried to sit up and stand up while you were still coming out of anesthesia.  You are always and forever my little wiggle worm, unable to sit still even for a moment.  I don't think they were expecting your determined efforts to escape.

Due to previous bad experiences with anesthesia, this team of doctors decided it would be best to keep you overnight.  So, after an hour or so of watching you in the post-op room, they transferred you to the PICU.  The moment we set foot on this floor, I felt out of place.  Here were rooms full of very sick little children, and we were coming up here for observation of a healthy child after a routine surgery.  It was a wonderful reminder to me of how much God has protected you, my dear Wesley, and blessed you with good health.

Around noon you were still clinging to Daddy and refusing any clear liquids.  We asked the nurse if we could please offer you your coconut milk and she hesitantly said yes.  Of course she was concerned that it might not sit well in your stomach, but at that point she was desperate to see you swallow something.  Anything.  She didn't realize what a stubborn little fellow you are.  Despite being starved, you refused the clear liquids on principle.  As soon as we put your coconut milk in your sippy cup, you chugged it down like there was no tomorrow.  Then you started getting antsy and wanted Daddy to put you down.  The nurse kindly unhooked your IV and your heart monitor, and you immediately made a run for it.  Out the door and down the hall you went, as fast as your little legs could carry you.  You found the Ronald McDonald play room on the ICU floor and ran in as if you owned the place.  What a joy it was to your Daddy and me to hear you laughing and squealing with delight as you discovered such fun things on that hospital floor.

While we were playing with you, the ICU nurse started requesting that the surgeon begin the discharge process.  He wanted to wait several hours and then observe you again, but the nurse was insistent.  Of course, she's the one who saw you running around as if nothing had happened that morning.  Then Daddy came to get you from the play room with a big smile on his face.  He said you could be discharged as soon as you ate something and had a wet diaper.  Daddy had found food in your room that the nurse had kindly ordered for you - a hamburger, french fries, strawberries, canned pear halves, and apple juice.  I still laugh just thinking of handing you a tray with these foods on it.  Just to be clear, we did offer you a bite of the hamburger, which you adamantly refused.  We also handed you one of the french fries - you promptly threw it on the floor.  I mean, who eats french fries when there is yummy rice cereal and pear baby food near by, right?

After gobbling up your food, you were ready to go again.  As I watched you, I was again amazed at how quickly you could forget all of the pain and suffering you had just been through and just enjoy the moment that God was giving you.  Despite the discomfort you must have been in, you chose to ignore it and instead delight in the amazing colors, lights, pictures and toys at the hospital.

You are such an example to your Mommy and Daddy of rejoicing despite suffering.  You are thankful for every little thing that God gives you, and you live your life to the fullest, not missing a second of the life God has given you.

The Lord has been so kind to uphold your life these past two years and to provide for your every need, both great and small.  Today, on your birthday, we rejoice that God has given you to us as a precious gift and thank Him for continuing to sustain your life and shower you with His loving care.

Wesley, we love you more than words can say!


Friday, April 1, 2011

I Am Weary

"I am weary with crying out; my throat is parched.  My eyes grow dim with waiting for my God....  But as for me, my prayer is to you, O Lord.  At an acceptable time, O God, in the abundance of your steadfast love answer me in your saving faithfulness."  Psalm 69:3, 13

The last month and a half has been difficult around here, to say the least.  First Wesley got the flu.  Then he got pneumonia.  Then the crying and screaming started - the incessant, inconsolable tears that included head banging, glasses throwing, leg kicking and ear pulling. At first we assumed it was the beginning of typical two year old behavior, but everything wasn't adding up.  We brought him in to see our ENT, who informed us that he fought too much for her to look into his ears under a microscope and see whether or not his tubes were blocked.  She said in order for her to check them out, he would need to be sedated.  So we set an appointment with a different ENT (who had no problem holding Wesley still and looking in his ears, despite the kicking and screaming).  This ENT informed us that both of Wesley's tubes were completely blocked and that there was fluid in both of his inner ears.  But since he passed his hearing test, she was not the least bit concerned and recommended that we come back in six months.

In the mean time, Wesley stopped speaking.  He used to have five or six words, but now he was saying NOTHING!  Instead of listening to us, he started watching our faces and hands intently and started learning new signs.  While we were excited to see him learning new signs, we were concerned about his loss of words and lack of interest in vocalizations (except for the aforementioned incessant crying).  So we sought recommendations and found a highly regarded ENT who is known to be very difficult to get in to see.  By God's grace, he had an opening last week, and we were able to bring Wesley in.

This doctor was immediately concerned by Wesley's loss of words, lack of balance, pulling of his ears, and constant crying.  He explained that at Wesley's cognitive level, hearing tests have such a wide range for normal that Wesley could easily test in the normal range without being able to hear well at all.  He also informed me that the pressure from the fluid in Wesley's ears is probably causing him significant discomfort which has resulted in his misery (and ours) for the past month and a half.  This doctor recommended surgery to replace Wesley's tubes, drain the fluid from his ears, and remove his adenoids.  Apparently the removal of adenoids significantly reduces the likelihood of Wesley's needing tubes again in the future.  Wesley's surgery is scheduled for next Wednesday morning.

Please join us in praying that God would use this surgery to relieve Wesley of all the pain he has been experiencing and to improve his hearing, resulting in him speaking again.  We also covet your prayers that there would be no complications with the anesthesia and that God would give the surgeon wisdom and knowledge as he performs the surgery, as he informed us that if Wesley has any malformation of his palate, removing the adenoids would cause permanent speech problems.

Our prayer is to the Lord, and we pray that in the abundance of His steadfast love, He would answer us in His saving faithfulness.