Monday, December 27, 2010

Christmas Day

This Christmas was a special day for us.  For the first time, we stayed home for Christmas and enjoyed it as a family.  The boys loved the extra attention, and Mike and I were grateful for a laid back and relaxing day.

First the boys opened their stockings.

Wesley LOVED watching his wind-up toy jump across the floor.

Zach was a delight as we opened presents.  He excitedly asked us to read the label on each present and then handed it to the recipient.  It was so much fun to watch his joy as he handed others their presents.  He was full of generosity and was so happy for us as we opened our gifts.  (Of course he also loved the fact that he had the privilege of opening all of Wesley's presents as Wesley was completely uninterested in the unwrapping process.)  Zach was especially excited as we each opened the presents he had picked out for us.

Zach insisted on giving Mike a five pack of Hot Wheels Ferraris. He just knew that was EXACTLY what Daddy wanted!

Zach couldn't wait for me to open the scarf he picked out for me!

Meanwhile, Wesley was content to start  working on stacking his new set of stacking cups.

We did persuade Wesley to open one of his presents though!

After breakfast, Zach and I decorated gingerbread men.

We then enjoyed a delicious Christmas lunch together and had a wonderful time playing together as a family.  It was nice to have a day with no therapy, no doctor's appointments, and nowhere to go.  We were free to enjoy a spectacular day of family time with no interruptions!

Wednesday, December 22, 2010


I have struggled for a month now, wanting to share the burden that has been weighing on my heart but not knowing what to say or how to say it.  Several months ago, I chanced upon Reece's Rainbow, an organization that facilitates the adoption of children with special needs - most of them children with Down syndrome. What I read there opened my eyes to the horrors of what it means for a child to have Down syndrome in Eastern Europe.  These children are considered unacceptable and are put into orphanages at birth.  If they are not adopted by the time they are five, they are moved to mental institutions where they live out the rest of their lives.  From the moment they are born, their sentence has been written - a life of abandonment, neglect, grief, and misery that the rest of us could never even imagine.  (You can see an NBC video clip on Serbian mental institutions here.)

As I looked through the hundreds of pictures listed on Reece's Rainbow, one particular little girl jumped out at me.  This little girl has tugged at my heart until it has broken for her.  You see, when I look into the eyes of this precious little girl, I see my son Wesley. They have the same wispy blonde hair, red nose and cheeks, and open mouth expressions.  And they were both born in April of 2009.  The difference is that Phoebe was unwanted and put away forever, just because she has Down syndrome.

It rips my heart out to think that no one would want a little girl so very much like my son.  And Phoebe is by no means the only one. There are countless children just like her waiting in orphanages for God to lay it on the hearts of a family to come and rescue them and adopt them into their own families.

This Christmas, we can give them the gift of a new life. International adoptions cost in the neighborhood of $25,000, so any donation to these children lowers the cost of their adoption and increases their chances of finding their forever family.  As my friend Rochelle said so well, "God calls each of us to support orphans, and Reece's Rainbow is a great Christian organization to accomplish that mission."

So what are we waiting for?  Let's skip that extra dinner out and give a far greater gift!

Tuesday, December 21, 2010

In Awe of Christmas

I will never truly grasp what it meant for God to send His only Son into the world to be born as a baby for the single purpose of growing up and being rejected by the world He came to save.  How God's heart must have broken as He watched His Son be mistreated, mocked, beaten, and eventually killed.  And to think that He did this for us.  For me.  For Wesley.  What must God have felt when no one in all of Bethlehem would offer a place for His only Son to be born?  His Son was rejected even at His birth.  Then, once Jesus was grown, God permitted the people that He created to mock His Son - to cruelly taunt Him, speak hateful words to Him, spit in His face, whip Him, and brutally murder Him.

As a mother, it is hard to think about the future, when inevitably Wesley will be mistreated.  He will be mocked.  Others will reject him.  If I had the choice, I would never choose this road for my son to walk.  I wish that I could protect him from the world.  I wish that I could always cover his ears when children say, "Mommy, what's wrong with him?" and shield him from cruel laughter at his unusual behavior.  I wish that he would never be rejected by his peers.  My wish that I could protect my son leaves me in awe that God could have protected His Son but chose not to.

 Instead, God chose for His Son to endure great suffering and mistreatment.  And He chose this because of His great love for us.  Oh how unfathomable and amazing God's love for us is that He would allow His Son to endure such things.

Thank you God for sending Your Son to be born and to be rejected so that we might be saved.

Thursday, December 16, 2010


My Dearest Gracie,

It has been five years now, and I still miss you so much.  You will always be my first child, my first daughter, and there is a special place in my heart just for you.  I will never forget the day we found out your little heart had stopped beating.  Seeing the back-up of fluid into your heart and hearing the doctor explain what happened was the most heartbreaking news your Daddy and I have ever received.

I have never heard your Daddy weep as he wept for you.  You see, we loved you so much and were looking forward to meeting you in just a few short months.  But God had other plans - better plans.  He brought you home to be with Him.  Now when I think of you, I picture you at the feet of Jesus, your Savior, worshiping and praising Him.  Daddy and I long for the day when we will join you and see Jesus with our own eyes.  Our biggest prayer for our children is that they will trust in Jesus as their Savior and spend eternity with Him.  So while we miss you here on earth, we are filled with joy that you are already in the presence of Jesus.  And, one day we will join you and we will all spend eternity together worshiping our Savior.

One of my favorite songs is called "It Is Not Death To Die". Whenever I hear it, I think of you Grace, and I weep.  My tears are no longer tears of mourning and grief.  Now, my tears are a mixture of sadness and joy.  I still selfishly wish that you were here on earth with us, but I also rejoice that in your death you did not die.  Instead you are living life as we on earth can only long for and feebly imagine.

I love you Gracie, and I will see you soon!


It Is Not Death To Die
It is not death to die
To leave this weary road
And join the saints who dwell on high
Who've found their home with God
It is not death to close
The eyes long dimmed by tears
And wake in joy before your throne
Delivered from our fears

O Jesus, conquering the grave
Your precious blood has power to save
Those who trust in You
Will in Your mercy find
That it is not death to die

It is not death to fling
Aside this earthly dust
And rise with strong and noble wing
To live among the just
It is not death to hear
The key unlock the door
That sets us free from mortal years
To praise You evermore

O Jesus, conquering the grave
Your precious blood has power to save
Those who trust in You
Will in Your mercy find
That it is not death to die

Friday, December 10, 2010

The Things I Can't Do Anything About

I will never forget the women's retreat I attended soon after miscarrying our first child and watching all my friends continue in their pregnancies and then give birth to their children.  I heard a message by Carolyn Mahaney at that retreat that changed my life. At the time it seemed clear that the Lord put me there to hear that message to prepare me for the difficult months ahead. Now as I look back though, I see that God's perfect plan was so much greater than I realized at the time.  God was using that message to prepare me for the rest of my life.

At the retreat, Carolyn gave a message from John 21:15-22 called "What To Do About The Things We Can't Do Anything About".  In it, she talked about how Jesus told Peter what kind of death he was going to die.  Then, when Peter asked about John, Jesus said, "What is that to you?  You follow me."

Jesus was letting Peter know that there would be things that would happen in his life that he would not want to happen but that he wouldn't be able to do anything about.  The same is true for us - things happen in our lives that we didn't choose and that we don't want and that we can't change.  But, we know that God has assigned these unwanted experiences in our lives and that they have been assigned by Him in order to glorify God.

When we are tempted to sinfully compare our lives with others in those times, Jesus' answer to us is the same - stop looking at others and look to Jesus, the one who can give us grace in full measure. Sinful comparison destroys our peace and distorts our view of a wise and loving God.  But if we keep our eyes on the Lord and follow Him, we will fulfill the purpose for which these trials were assigned to us, which is to glorify Him.

We should rejoice when we join in the sufferings of Christ, that we might be filled with joy when His glory is revealed.

So, while it is still hard sometimes to look around and see others living lives that in my eyes seem to have everything while my life seems full of hardship, I am grateful that Jesus' words to Peter apply to me as well. Jesus knows that I do not need His sympathy while I wallow in self-pity.  I need a command, because the one thing I need to be able to walk through this is to follow Him.  And when I am following Him, then I will be able to see His abundant mercy and grace that have been poured out on me.  Once I have seen my loving and faithful Savior, then I will be able to rejoice when I join in His sufferings, that I might be filled with joy when His glory is revealed.

Tuesday, December 7, 2010

Signing, Stacking and Speaking

We've had a big week over here!  About a week ago Wesley started signing "more" with only verbal prompting from us.  Then yesterday morning as I pulled out a box of graham crackers for breakfast, I looked over and saw Wesley signing "more" with a HUGE smile on his face.  I was so proud of him that I thought I just might burst with joy!  We've been working on signs for so long, and to see him finally figure out that he can initiate signing to communicate with us that he wants something is so exciting!  Please continue to pray that Wesley will pick up new signs and begin to use them too!

Wesley has also figured out how to nestle his stacking cups.  These cups have been one of his favorite toys for months now.  He will sit for long periods of time and work on putting the cups together, patiently pulling cups back out if they don't fit and trying again.  His persistence amazes me.  And now it has paid off!  Check out this video of him stacking his cups together:

Wesley also loves to play with his stacking rings. (Are you catching a pattern here?)  As we were taking a video of him the other day, we were amazed as we heard him say "in" while putting a ring on.  We have been working on "in", "on" and "open" with his therapists for months, and usually after we have said a word repeatedly he will eventually try to imitate it.  But before this, we had never heard him say a word other than "dada" without prompting.  And to show that he really did know what he was saying, Wesley has continued to say "in" when putting toys in or on something.  Way to go Wesley!

We love you Wesley, and we are so proud of you!

Monday, December 6, 2010

My Little Patriots

After decorating our Christmas tree last week, I noticed that Zach and Wesley were wearing their matching New England Patriots jerseys and thought it would be the perfect time for a photo shoot.  So, without further ado, here are some pictures of my precious little Patriots:

Wednesday, December 1, 2010

Where Does My Help Come From?

Since Wesley was born, my life has changed significantly.  Instead of weekly play dates with friends and their kids, regular trips to the pool with Zach in the summer or to the children's museum in the winter, time to sit and read books to Zach for hours at a time, and plenty of time to catch up with friends on the phone, our house now runs on a strict schedule.  Now the boys and I head out to multiple doctor's appointments each month (or week), welcome four therapists into our home each week, and make a three hour round trip to see Wesley's feeding therapist every Monday.  Zach also has a gymnastics class each week, which is a blessing for Zach while adding a little more busyness for me.

When Wesley was first born, as I looked into the future and imagined that it might include a lifestyle like this, the thought of it was overwhelming.  But I have found that God's grace is ALWAYS sufficient.  In 2 Corinthians 12:9, God says, "My grace is sufficient for you, for my power is made perfect in weakness."  I have found this to be true over and over again over the past year and a half.  When I look at all that the Lord has called me to, it seems like too much to bear.  But each day, as I call out to him for help, he always pours out abundant grace that is more than sufficient for carrying me through the tasks at hand.

When I look back at Wesley's first year, the first thing that I see is God's amazing grace.  It is only by the Lord's sustaining hand that I was able to survive 10 doctor's appointments and four trips to the hospital in Wesley's first month (67 appointments, procedures, and hospital visits in the first year and 106 to date), towing along a pump and pumping in doctor's offices, hospital blood drawing stations, and hospital rooms.  It is only by God's powerful grace that he gave me the strength and the self control to eliminate all allergens from my diet for seven months as we sought to identify what Wesley was allergic to.  Those who know me best would know that I have no self control when it comes to food!  It is only by God's sustaining grace that he gave me the ability to pump for eleven months and give Wesley the antibodies he needed to get him through his first winter.  I am so weak, and on my own I would have given up.  I would have lost heart.  But, the Lord was faithful to give his strength to my faint heart; his power to my weakness. As I look back, I am in awe that most days I was not overwhelmed. Most days God gave me the grace to take each day one moment at a time, trusting God for the grace I would need for the next moment.  Thank you Lord!

Wesley & his friend Stellan, the son of a dear friend (taken 1 year ago)

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.

This is not to say that I have walked through the last year and a half alone.  God has blessed our family with wonderful friends who have come alongside us, caring for our souls, cleaning our house, and watching Zach during countless doctor's appointments and several surgeries.  But the help we have received from them is help that we have ultimately received from God.  And I am beginning to see that the help that I thought I sometimes needed from them but did not receive was also a kindness from God, to teach me that He is the one who sustains me.  He has used the past 19 months to show me that when I am in need of help, I should first call out to Him.  And when I do, He is ALWAYS faithful to strengthen me, help me and uphold me by His righteous right hand. (Isaiah 41:10)

Psalm 121
"I lift up my eyes to the hills.
From where does my help come?
My help comes from the Lord,
who made heaven and earth.
He will not let your foot be moved;
Behold, he who keeps Israel
will neither slumber nor sleep.
The Lord is your keeper;
the Lord is your shade on your right hand.
The sun shall not strike you by day,
nor the moon by night.
The Lord will keep you from all evil;
he will keep your life.
The Lord will keep
your going out and your coming in
from this time forth and forevermore."

Thursday, November 25, 2010


This week I have been reflecting on just how much I have to be thankful for this year.  First and foremost, I am thankful for my Savior, who saved me from my sin and has given me a new life. 
I am also thankful for the many blessings that the Lord has given to me, starting with my wonderful husband Mike.  The Lord has blessed me with a husband who loves Jesus, loves me, and loves our boys.  He is an amazing dad, faithfully training our boys, teaching them about Jesus, and enjoying every moment he has with them.  And despite all the extra work that has gone into caring for Wesley with doctor's appointments, therapy, hospital visits, etc..., Mike has made our marriage a priority, making sure that we we get time together away from the boys on a consistent basis.  If you're reading this Mike, I love you so much and so am so very thankful for you.  I am still amazed that I get the joy of being your wife!

And then there is Zach - for this child I prayed and the Lord has granted me my petition that I made to Him.  Whenever I look at Zach, I rejoice that the Lord has given me such a precious and delightful son.  It has been such a joy to see the Lord at work in his heart recently.  Earlier this week he informed us that he trusted in Jesus as his Savior.  Then he said, "Who is going to pray first on this special day? The day that I trusted in Jesus. Since I'm the special boy who trusted in Jesus, I'll pray first!" When he prayed, he prayed that he would always continue to trust in Jesus and that one day he would be with Jesus in heaven.  Of course, I don't know for sure if he actually trusted in Jesus as his Savior this week or not, but just seeing his heart softening toward the Lord and things of the Lord has been very encouraging to see.

And I am so very thankful for my precious Wesley.  He is the sparkle in our lives, the icing on the cake, the star on the Christmas tree.  Today Zach and I went to our family Thanksgiving celebration alone since Mike and Wesley were sick, and I was very quickly aware of just how much I missed my sweet little boy.  His radiant laugh was missing, there was no peek-a-boo with big smiles around great-grandma's overstuffed chairs, and there was no little boy to walk from one adult to another handing out hugs, high fives, and squeals of delight.  The Lord truly has blessed us with such a wonderful little boy - a precious son and a feisty, playful little brother who adores his big brother.

I am also thankful for the many other things God has blessed us with - wonderful insurance to pay for our extensive medical bills this year, fantastic therapists for Wesley through Early Intervention, provision for all of our daily needs, doctors who have been so helpful in caring for Wesley throughout the year, dear friends who have walked through thick and thin with us, a wonderful church, and an amazing family.

Sunday, November 21, 2010


Dear Wesley,

It is such a joy to be your mom!  Daddy and I had so much fun playing with you today.  You recently found Zach's little soccer ball, and you love it!  You start laughing as soon as we show it to you.  We think it's so funny that you love to put it on the floor and lay on it, rolling around on it.  You laugh and laugh as you're all curled up on top of it.

You also enjoy playing throw and catch with us.  We roll the ball to you, and then you throw it back to us.  Daddy's pretty proud of your throwing skills.  He insists that you already throw better than your big brother!  I think he's probably right - most of the time the ball goes in the direction you intend it to, and your form is pretty good considering your age. 

This week you've started kicking the ball around the house too.  You drop the ball down in front of you and then walk along kicking it as you go.  Eventually you are going to run into a wall since you watch the ball instead of watching where you are going, but you're pretty tough so you'll be OK.

 The soccer ball has been pretty good for your gross motor skills too.  As you walk around kicking the ball, you eventually lose your balance and fall.  Then, you keep chasing the ball around the house, laughing as soon as you reach it and then pushing it away so you can keep going.  The wonderful thing is that instead of army crawling when you're chasing it on the floor, you're regularly CRAWLING now!  And, your crawl is getting FAST.  You've picked up your big brother's trademark super speedy crawl.  This is exciting for Dad and I to watch, because you're strengthening your shoulders and your stomach muscles while you play.

 Since you were sick this morning, Daddy offered to stay home with you from church.  When I got home he told me about what fun he had watching your sign language video with you.  He had a big smile on his face as he talked about how much you laughed while watching it and how you kept moving your hands around as you saw the kids on the video signing.  It is such a joy for us to see you realizing that these people are communicating with their hands and starting to try to imitate them.  We are continuing to pray for you, that you'll start to pick up these signs and use them to let us know what you want.

Then tonight while wrestling with Daddy and Zach, you decided you wanted to tickle them.  You kept lifting up Daddy's shirt and tickling his tummy.  Your tickles have never been very effective before, but today you were actually making Daddy genuinely laugh.  (Daddy's pretty ticklish, so I was amazed that he kept lying there and letting you tickle him.  He must really love you!) You and Daddy and Zach had a blast tickling each other.  In case you didn’t know, you have a pretty awesome older brother.  He lay still for you and let you keep tickling him and poking him in the mouth and licking his forehead.  He laughed and giggled with you as we all enjoyed your belly laugh.

Wesley, you are such a delight and a blessing to our family.  Your laugh brightens our day!  I love you so much my sweet Wesley-poo!


Sunday, November 14, 2010

Sometimes It Just Hurts

Last night was hard.  We got together with a group of friends, most of whom have children around Wesley's age.  And while it should have been a special time of enjoying hanging out with friends and watching our kids play together, for me it was miserable. Whenever Wesley is around other kids his age, it is as if a spotlight is shining on him, showing off all of his differences for everyone to see.  While other kids are playing with toys in an age appropriate manner and running around together laughing, Wesley is not.  He would prefer to tap toys together, lick them, or try to hold a stack of them in one hand - all of this while walking in circles around a house.  Now that he has glasses, this also means that I need to follow him wherever he goes to make sure he doesn't take his glasses off, and more importantly, to make sure that his glasses don't get trampled when he takes them off.

I often wish that Wesley needed less supervision so that I could talk more with my friends.  But last night I realized I didn't actually want to be a part of the conversations that they were having.  It is hard to sit and listen to all the things their kids are doing, listen to the struggles that come with a normally developing toddler, and smile as they laugh about funny things that happened during their days. Sometimes I find that following Wesley around and watching him is much a much easier alternative.

Don't get me wrong, I love my friends.  I am grateful that they pursue me even when I try to hide.  I am so thankful to have friends that don't let me build walls up between us, but instead keep helping me tear them down, one brick at a time.  Last night I was so blessed to have a friend who saw that I was having a hard time, sought me out, followed Wesley and me from room to room, and cared for me.  She saw my ugly tears, heard my hurtful words, and still reached out to me and loved me.  And, the Lord used her caring words to change my heart.  The rest of the evening was still hard.  Seeing the other kids still hurt.  But, I was also able to see how the Lord has blessed our family so abundantly by providing us with friends who are committed to walking alongside us.

After getting home last night, the Lord brought the following verse to my mind, which helped me to regain perspective:

"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."  Psalm 16:5-6

The lines truly have fallen for me in pleasant places.  God has given me a wonderful husband, two precious sons, and dear friends who care about our entire family. But most importantly, God has shown his love for me by sending His Son to provide for my greatest need by dying on the cross so that I can spend eternity with Him.  What more could I ask for?  Indeed, I have a beautiful inheritance!

Thursday, November 11, 2010

Christmas Cards

It seems like Christmas is sneaking up on me this year.  It's already time to start thinking about Christmas cards, and I don't think we even have one single picture of our family this year where all four of us are looking at the camera.

Thankfully, it looks like Shutterfly may come to the rescue.  They have these wonderful folded greeting cards, where I can pick a handful of individual pictures of us that give a story of our entire year rather than finding that perfect picture of the whole family.  I used this style of card for Wesley's birthday earlier this year, and I loved the way it turned out. 
In the past I have often used photo cards with one big picture, which are great when you have that one good picture of the family.  But, now that Wesley is old enough to try to squirm his way out of every picture, we'll have to see if this will work out for us or not.  I'm still crossing my fingers!!

I have been eyeing Shutterfly's thank you cards for years, but have never bought any.  I always remember them after I have already purchased generic ones on a grocery store run.  I know, shame on me!  Maybe this will be the year when I take the time to personalize our thank-yous.
Just looking at all these cards is getting me excited about ordering our own.  I guess I better pull out the camera, get my boys in some coordinating outfits, and start working on getting a good picture of the two of them together! 

Blogging friends, if you want 50 free cards of your own, follow the link!

Wednesday, November 10, 2010

Wesley Signing "More"

After getting his glasses on Friday, Wesley figured out how to sign "more" all by himself and is very excited about it.  Maybe actually SEEING our hands when we sign for him helped a bit with that.  It's more of a clap than a "more" sign, but hey, we'll take what we can get.

My favorite part about watching him sign is seeing how proud he is of himself.  He laughs and laughs, loving our praise and delighting in the fact that he's figured out how to communicate with us.  In fact, I think he's more excited about being able to tell us that he wants more than he is about actually getting more of what he wants.

Here he is showing off his new signing skills for the video camera:

Tuesday, November 9, 2010

I Can See!

We picked up Wesley's glasses on Friday morning, and so far they have been a huge success.  Wesley can definitely tell that his glasses are significantly improving his vision, so he rarely tries to take them off. He keeps looking around and smiling, or walking to the windows and just staring outside.  I'm sure it must be an amazing experience for him to be able to see everything around him rather than living in one big blur.

Check out my new awesome glasses!

This is so much fun!  I can see EVERYTHING!

I must admit though, my favorite part about Wesley's new glasses is that he will sit and watch TV now.  Ever since he started rolling over at two months old, Wesley hasn't stopped moving. His therapists have explained to me that he has sensory issues that seem to drive him to be in constant motion.  But now I wonder, did poor vision have anything to do with it?  He still walks around the house constantly, and it is rare to see him sit still for even a moment or two.  But twice now since getting his glasses, he has sat completely still in my lap for 25 minutes while watching the Baby Einstein "My First Signs" video!  I am amazed, since I never knew it was possible for him to get his wiggles out and sit still.  And more than that, I LOVE snuggling with my baby.  If I could, I'd watch that video several times a day just to have the opportunity to hold him close.  I love just breathing in his sweet baby smell and wrapping my arms around him and letting him rest his head against my shoulder.  And, I love that this is not the usual hug, where I realize Wesley's wanting to snuggle with me as he's already leaving, because he already got his half a second snuggle with mom that he was looking for.  Instead I get to hold him for a full 25 minutes!  Wow!  But yet, I'm still sad when the video comes to an end and he starts squirming to get down.  We'll watch the video again tomorrow, though.  And the day after that, and the day after that.  I'll make sure of it!  And, maybe he'll even learn a few signs along the way.

Sunday, November 7, 2010

Happy Birthday

Dear Zach,

Happy Birthday, my firstborn son!  I can't believe you are four years old already.  I still remember praying that the Lord would give us another child after we lost your older sister Grace.  When we found out you were a boy, we named you Zachary, which means "the Lord will remember".  And, the Lord has remembered! You have been a wonderful blessing to us from the Lord.

It is so clear to us that you are the perfect older brother for Wesley.  He adores you (with good reason)!  You can get him to do things after just a few minutes that it takes Mommy and Daddy forever to get him to do.  For example, we've been working on getting him to put his lips together to say "baba" or "mama" since he was 12 months old.  Last weekend, you decided to play a game with him and started smacking your lips together.  He thought you were so funny that he started imitating you.  Within an hour you had him saying "baba" and "mama" and laughing about it so hard that he kept falling over.

We love watching you play so sweetly with Wesley.  Whenever you talk to him, you change your voice to this sweet little voice and you say things like "Wesley, would you like another goldfish? Say "more"...".  Then you wait a minute to see if he'll try it before you give him one.  You get so excited about working on his picture cards with him, showing him two cards and saying so sweetly, "Wesley, would you like your ball, or would you like the Itsy Bitsy Spider?"  You LOVE it when he picks the right picture card and you clap and say "Yay, Wesley" even louder and more jubilantly than I do.

Sometimes you help a bit too much with making sure Wesley's following the rules, but I am grateful that you are always faithful to make sure that he is NEVER licking ANYTHING!  I'm counting on you to keep a good eye on him now that he has his glasses and let me know any time he takes them off.

It is such a delight for me to watch your mind at work.  You LOVE anything to do with numbers.  When I read stories to you, you are always telling me what page number we are on and what page number comes next.  The other day you even surprised me with how well you are learning to tell time.  You came up to me and told me, "Right now it's eight fifty-seven.  Then it will be eight fifty-eight and then eight fifty-nine."  Thinking I could catch you, I asked you what time it would be after that.  You just smiled at me and stated rather matter of factly, "Nine o'clock".  You're starting to learn some math concepts too.  You regularly come up to me and say things like "Hey mom, guess what!  Three and four and three makes ten!"

We've enjoyed teaching you how to read this summer too.  I'm so glad I bought you the BOB books, since you have thoroughly loved reading.  Reading is like a puzzle to you, and your eyes light up each time you fit the letters together to make a word.  It has been fun to see how much this has opened up your world as you now try to read signs and everything else you see.  You also love to write out your own words on the bathtub and the fridge with your sponge letters and magnet letters.

You were so timid about learning to ride your tricycle at the beginning of the summer that I was surprised you were willing to try out your bicycle last month.  But with some extra coaxing from Dad, you finally tried it and were pleasantly surprised at how fun it is to ride a bike.  I am so proud of you for being brave and trying it even though you were scared of falling.  You have really grown in stepping out of your comfort zone, fighting your fear, and trying new things this year.  

Most of all Zach, it has been such a joy to teach you more about Jesus this year and watch as you have begun to understand the gospel.  Now that you realize I read the Bible before you get up each morning, you come into my room at seven and ask right away if I can read to you too.  So, you set up the pillows on Daddy's side of the bed and sit next to me while I read to you from the gospel of Mark.  As I explain to you what we read, it is such a joy to watch the connections you make in your mind.  Last week as I was explaining to you who the Pharisees were, you realized they were the same people who wanted to kill Jesus.  So, you were very excited to tell me that Jesus let those bad men kill him because he loves us so much.  Your prayers to Jesus are also so precious.  Just last night you thanked Jesus for taking the punishment that we deserve and dying on the cross for our sins because he loves us so much. I continue to pray that your knowledge of Christ's love for you will lead you to place your trust in your Savior.

I love you so much Zach!  I look forward to seeing what the Lord has in store for you in this upcoming year.


Wednesday, November 3, 2010

The Ring Bearer

We were thrilled to have my dad come up for a visit a week and a half ago.  With the way everything worked out, Wesley didn't get to spend much time with Grandpa,  but Zach and Grandpa had a WONDERFUL time together!

On Friday morning we went to Zach's gymnastics class, and he was excited to show off his new skills.  Grandpa used to be a gymnast in high school and college, so that made him being there extra special.  Then we went out for lunch and took Grandpa to the park.

Then on Saturday we went to my cousin Dan's wedding, where Zach was quite the handsome ring bearer.  Zach ADORES Stephanie and was overjoyed to be a part of their special day.  We usually have a difficult time getting him to smile for the camera, but he was all smiles for her.

He even smiled for a family picture! (Too bad his eyes are closed....)

After church on Sunday, Zach showed Grandpa some of the new things he learned how to do this summer.  He did his best to catch Grandpa on his bike, but Grandpa's still too fast for him!

Zach was particularly excited about reading to Grandpa.  He's started reading through the BOB books this summer and is really enjoying figuring out how to read.

Zach definitely loves his Grandpa.  We miss you Dad and look forward to seeing you soon!

Sunday, October 31, 2010

partial Trisomy 4p21q

I often find myself struggling to explain Wesley's exact diagnosis, instead just stating that he has a rare chromosomal abnormality. I have found that if I use the exact medical terminology, I often get a blank stare and glazed over look in response.  But due to recent questions I have received, I thought I would take the time to explain his diagnosis in greater detail.  So, for those of you interested in the science behind the diagnosis, here it goes:

Whereas most people have 46 chromosomes, Wesley has 47. His karyotype (a picture of systematically arranged chromosomes) shows that he has an extra 21st chromosome. Usually triplication of the 21st chromosome would indicate that a person has Down syndrome, but this is not the case for Wesley.

Chromosomes are composed of 2 arms - a short arm (labeled "p") and a long arm (labeled "q"). In Wesley's extra 21st chromosome, the short arm is actually a piece of the 4th chromosome, NOT the 21st. As a result, instead of having Down syndrome, Wesley has the diagnosis of partial Trisomy 4p21q. This means that he has a partial trisomy of the 4th chromosome (4p) and a partial trisomy of the 21st chromosome (21q).

Because Wesley's chromosomal makeup is different from Trisomy 21, he does not have many of the visible attributes often associated with people with Down syndrome.  On the other hand, the fact that he has an extra piece of the 21st chromosome means that there are some similarities. Just like many children with Down syndrome, Wesley has hypotonia (low tone), particularly in his tongue and jaw. Because of that, he has many difficulties with with feeding and speech. His hypotonia also affects his walking and the strength of his ankles.

Since Wesley's chromosomal abnormality is so rare, doctors cannot give us any information as to what Wesley's long term capabilities may be. Our best guess is that they will be similar to that of a person diagnosed with Down syndrome.  But, as Psalm 139 says, the Lord knows what Wesley's future holds, and he has sovereignly and lovingly ordained all of Wesley's days.  We trust that the Lord has a wonderful plan for Wesley's life, and we look forward to seeing all that the Lord has in store for him.