Phoebe

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!

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.

Grace

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!

Love,
Mama

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

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.

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!

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:

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."