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.

Love,
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

Always Rejoicing

Wesley,

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!

Love,
Mama

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.

Two Birthdays - Two Different Stories

Two years ago this April, God blessed our family abundantly when our precious Wesley was born. That same month, on the other side of the world, another sweet little baby was also born. Instead of welcoming her into their family, this sweet little girl’s parents abandoned her – just because she has Down syndrome. While Wesley was brought home into a loving family who rejoiced in God’s gift to them, Phoebe was sent to an orphanage.

As we rejoice and celebrate Wesley’s birthday, Phoebe’s birthday will come and go without anyone acknowledging it. The only meaning her birthday has is that it brings her one year closer to being sentenced to life in a mental institution.

Over the past few months, God has laid Phoebe on our hearts. It is our prayer that He will bless her with an adoptive family of her own, who will not only save her from the life sentence she is living but also introduce her to her Savior, that she might be saved for all eternity.

Wesley is a blessed little boy. He has a family and friends who love him, plenty of clothes and food, bins of therapy toys, and an overflowing amount of fun things to play with. He needs NOTHING. In light of this, we would like to ask our friends to consider celebrating Wesley's birthday by giving a gift to Phoebe.

Giving to Phoebe’s adoption fund highly increases the chance of a family adopting her, as the costs of international adoptions can range from $25,000 to $30,000.

We also ask that you would pray for Phoebe, that God would lay her on the hearts of a couple who loves the Lord, and that God would provide a way for this family to adopt her and bring her home.

To give, you can go to www.reecesrainbow.org/phoebe and click on the link on her page to donate. Or if you live in the area and it is easier for you, we can collect donations and send them in.  We look forward in anticipation to how God will use these gifts for Phoebe, however small, to give her a hope and a future.

Wesley's Birth Story - Part 5

Click here to read Part 1, Part 2, Part 3 and Part 4.

Soon after receiving Wesley's diagnosis, I began meditating on Romans chapter 8 each day for several months.  God brought much comfort to my soul through Romans 8:28-29, 32, which says:

And we know that for those who love God all things work together for good, for those who are called according to his purpose.  For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers.... 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? ... For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation will be able to separate us from the love of God in Christ Jesus our Lord.

I clung to the promise that God would work Wesley's diagnosis and subsequent struggles in life for good in my life, in Mike's life, in our marriage, in our family, and in Wesley's life too if he trusted in Jesus as his Savior.  Through these verses, along with others, God opened my eyes to an eternal perspective as I saw that God was using the trials I was walking through and would continue to walk through to conform me to the image of Jesus.  While I selfishly wished for life to be easy on this earth, I began to see that God was using these circumstances for my eternal good, which was far greater than any momentary affliction.

As I looked at the possible pain and struggles in our future, God graciously drew my heart to Him, reminding me that I could trust Him and trust that He was working all things for my good because of the gospel.  Since God had already provided for my greatest need by sending His Son to die on a cross and pay the price for my sins, how could I not trust Him to graciously give me everything that I needed to raise Wesley and care for him?  How could I not trust Him to graciously give Wesley everything that he needed in this life?  Then God confronted my fears by reminding me that nothing - nothing present and nothing in the future - would ever be able to separate me from the love of God in Jesus Christ my Lord.  If this promise was true, then I truly had nothing to fear!

Two years later, I still fear the future sometimes, and I still mourn the life that Wesley will never live here on this earth.  Some of my fears have come true.  Therapy is hard work.  Wesley is falling farther and farther behind his peers.  Zach has had a difficult time adjusting.  Mike and I have had to work extra hard to build our marriage as we walk through this together.  Life is hard. But there are so many joys too!  While Wesley's diagnosis is a trial, Wesley's life is a complete delight and joy.  There is more laughter in our home now than there ever was before Wesley was born.  We have the opportunity to look at life through the eyes of a little boy who is radiant.  Every moment of every day is exciting for him as he discovers new things and enjoys life to the fullest. And oh how we love him!  I can't imagine what my life would be like without my sweet Wesley.

God has blessed us abundantly in giving Wesley to us as a precious gift. While the rest of the world might not think so, we have come to see that God made no mistakes when He created our sweet Wesley.  Wesley is not living out God's second best plan for his life.  God created him perfectly according to His perfect plan for Wesley's life and for ours.  The lines truly have fallen for us in pleasant places.

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 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 there is fullness of joy; at your right hand are pleasures forevermore.  Psalm 16:5-6, 8-11

Wesley's Birth Story - Part 4

Click here to read Part 1, Part 2 and Part 3.

When Wesley was one month old, we brought him in to our pediatrician's office to get his blood drawn for a chromosomal karyotype.  We were told that the results would be in within a week.  My doctor told me that he had no reason to suspect anything was wrong, but that he was happy to run the tests to allay my fears.  When I had not received the results a week later, I called the office only to be told that the lab had contacted the doctor's office to ask specifically what they were supposed to be looking for.  As I look back, I can see how God used this phone call to again prepare our hearts for the news we would soon be receiving. For why would a lab have additional questions on normal looking chromosomes?

A week later, I called again for the results and was told that they were in but that my doctor had not yet seen them.  As soon as he saw them, they would give me a call with the results.  A few hours later, after the doctor's office had closed, the phone rang and I saw my doctor's name on the caller ID - not the doctor's office, but my doctor's personal phone.

When I answered that phone call, the world as I knew it was shattered. My doctor gently told me that he had the results from Wesley's chromosomal karyotype, and that Wesley had 47 chromosomes.  My mind scrambled, as in that moment I could not for the life of me remember how many chromosomes most people have.  I did my best to listen to him, but instead of hearing his words, all I felt was my world caving in and the rivers of sorrow swirling around me as if to drown me.  I wrote down the name of the geneticist he wanted me to see, thanked him for calling me, and hung up.  I felt numb and in shock.  After calling Mike, telling him the news, and asking him to leave work early and come home, I called a dear friend.  I remember sobbing uncontrollably on the phone to her and saying over and over, "Why?  Why did God do this?  This can't be happening.  This can't be true!"  I will never forget her tears of compassion and love as she cried with me.  That night she and her husband came over and just sat with Mike and I as we cried and struggled through our feelings and how they lined up with what what we knew to be true about God in our heads.

Another friend of mine also called that evening, and to this day I regularly pray that the words she spoke to me will one day come true.  I remember her saying that her prayer was that Wesley would be filled with the Holy Spirit from a young age and that his life would point many to the Lord and bring much glory to God.

The day I received the news of Wesley's diagnosis was the day that Isaiah 41:10 truly became real to me.  Now that my fear was an all-encompassing fear for the future of my child for the rest of his life, God's promise that He was with me became so much greater to me.  For the rest of my life as I cared for my precious Wesley, no matter what happened, God would be with me.  He would never leave my side! Oh what a wonderful promise!  As the rivers of sorrow crashed over me, God's promise that He would strengthen me for the road ahead and that He would help me as I walked each day along the road that He had ordained for me gave me the hope that I needed to put one foot in front of the other and keep going.  Oh, and the promise that He would uphold me. How I clung to that!  In my mind I pictured the rivers of sorrow threatening to sweep me away, but the Lord reaching down and lifting me up and upholding me with His strong, righteous, right hand.  God was promising to never let me go. No matter what the future held, I could know for certain that God, because of His abundant and merciful grace, would hold me up and never let go of me.

Click here to read Part 5.

Leaps and Bounds

My dearest Wesley,

I want to take a moment and pause my series of posts on your birth story to tell you how very proud I am of you!  This month you have surprised us all with the leaps and bounds you have taken.

After working SO HARD to learn your first few signs ("all done", "more", "help please"), you picked up the sign for ball after watching your speech therapist do it twice!  You LOVE the sign for ball, and you delight in showing us how well you can sign it.  If we ask you, "Wesley, do you want to play with a ball?", you will break out in a huge grin and start signing "ball" exuberantly.  (Of course, most of the time you are not the least bit interested in actually playing with a ball; you just want to show off your new skills!)  In fact, you like this sign so much that you are attempting to use it for "help please" as well.  For now we're letting it slide, but eventually you will need to start using the correct sign for "help please" again.



Your balance has improved as well, and you are pushing your newly found balance to the utter limit as usual.  Now, instead of watching you walk steadily, we watch you recklessly RUN everywhere.  I love to listen to your laugh as you run from place to place throughout the day. Your source of energy is endless.  And when you do get tired, you are happy to sacrifice your safety.  You would much prefer to keep going (even if it means you will fall over again and again) rather than rest for a while.

Since starting your sensory diet, we have been introduced to a whole new Wesley.  You can be so calm at times now, and your attention span is greatly improving.  Now that you are able to sit quietly for longer than ten seconds, I decided to introduce you to "blanket time" where you sit on your blanket and play quietly for ten to fifteen minutes.  We have tried this unsuccessfully several times before, but now you have picked it up with no problem!  As soon as I lay out your blanket with your favorite toys, you run over, sit down, and start playing.  I am amazed at how quickly you picked up this new routine.  I go around your blanket, touching your blanket and saying "yes" and then touching the carpet and saying "no" to explain to you to stay on the blanket.  Of course, you think this is such a funny game.  You smile at me and start hitting the carpet over and over again until I remind you that it's time to stay on the blanket.  Then you STAY there until the timer goes off.

You have also turned a corner with feeding, which is a huge answer to prayer.  In addition to the foods you started eating last month, you now eat freeze dried apples and pears, macaroni and cheese, hot dogs, lunchables, canned green beans, peas and carrots, cream of wheat, soy yogurt, and you have even eaten one of Mommy's pasta dishes for dinner. Wesley, do you realize the importance of this?  You're now eating foods from all four food groups!  Last week you also started drinking out of a straw cup!  We have been working on this for a year now, which makes this a monumental milestone for you.  I hope you know how proud your Daddy and I are.  Those cheers and dances we do when you learn something new aren't just to make you smile.  They are because we are so very excited that God has helped you to learn something new.  I must confess that two months ago I was feeling pretty hopeless when it came to helping you transition to eating real foods.  It is amazing to look back and realize just how far you've come.  God is doing an amazing work in you Wesley.  When I look at you, I can't help but rejoice and sing praises to Him.

This brings me to the thing I am most excited about.  My favorite part of our day is when your Daddy and I bring you and Zach upstairs to get you ready for bed.  Daddy reads Zach a story from the Bible and then we sing and pray together.  We started this tradition before Zach was one year old, and I have longed for the day that you would join in.  Up until this month, you have spent this time playing with Zach's Legos and Matchbox cars until we start singing.  Then you are excited to join us by dancing around.  But this month you started sitting still and not fighting Mommy when we read books for therapy.  So Mommy and Daddy decided to pull out Zach's baby Bible story book and start reading it to you.  You LOVE it!  Some nights you ask us to read it to you over and over again until we eventually have to tell you that we are all done.  What a joy it is for us to watch you delighting in hearing about Jesus.  Our hearts' desire is that you will trust in Jesus as your Savior and grow to love Him with all of your heart.

I love you so much, my little peanut.  You bring such joy to my life and to our family.

Love,
Mama