This is the story of Madeline Willoughby Lester, Maddie for short (and Madditude when it fits), our third child and second little girl. It is her story - uniquely hers, of a child with Hypo plastic Left Heart Syndrome (HLHS). Though there are many children diagnosed with this disorder every year - each and every one of them walks it differently - some easier, some harder, and some barely get a chance to "walk" at all. We began this site as a means to keep our friends and family updated, in the end, it has become a therapy of sorts for us as well.
Madeline was born April 7th, 2004. She went home on her second day of life as what we thought was a very healthy child. In the middle of the night on Easter morning, all that changed and our nightmare began. She had begun dying and by the time we got her to the hospital it was almost too late. It was later confirmed that she was born with a very serious heart condition called Hypo plastic Left Heart Syndrome where the left side of her heart failed to develop. We were airlifted down to Lucille Packard at Stanford University for her first of three open heart surgeries. Since that time she's had all three stages of her "repair" done with the last one being done here at home at Seattle Children's Hospital. After her third surgery (the Fontan) Maddie was hospitalized for six long roller coaster months. She lost her battle on January 16th, 2008. We believe that the answer to our prayers came that day in profound healing by the Lord bringing her home. In the words of King David (after the death of his new born son), "he will not return to me, but I will go to him." We stand on this hope and this promise knowing that one day we will see our Madeline again. This is her story of hope never-ending.
We are grateful to God for the day that He blessed our lives with Madeline. She has been so instrumental in growing, stretching, molding and shaping us. Teaching us to walk by faith and not by sight. She taught us to live in the day and not worry about the future. Dave and I both agree that we are better people because of her. God has used her in countless ways to move us beyond ourselves, and we are grateful. It is such a wonderful testimony to us to read of person after person that her one little life has impacted! It was a blessing and an honor to be her Mom and Dad. We would rather have had 3 1/2 years of knowing and loving this little girl than to have never known her at all. We know that other HLHS parents may find this site looking for hope (I know because that's what we did) - I know that what you find here is not what you're looking for and you probably don't want to read on. But please know before you go - Madeline was one of our greatest treasures and she enriched our lives in ways too numerous to count. The life lessons we received from her were profound and we are better for it. The story is not over, we will be together again someday in our true home, Heaven. God's richest blessing's to you.

February 18th, 2009

What's that they say about "good intentions"? (Oh no, never mind, we won't print that here). They certainly don't get me anywhere - especially where a web site is concerned! Sometimes life just seems to get in the way - but here we are, still breathing.

Such wonderful things happened for Maddie's one year anniversary that I don't want to skip over them and not mention it. The biggest and best of all was something that happened all the way across the country in Mystic, Ct. where my sisters live. They own a children's hair salon called "Crewcuts and Curls" there, and for one whole day did free haircuts, and then took donations for the "Make-a-Wish Foundation" raising over $3500 for a child's wish. It was truly amazing! Not only that, but then they had a blood drive (and had 78 pints of blood donated!), a clown, a fire truck, an auction, etc. We were so blessed by the photos of our family and friends back there turning out for Madeline's memory. Thank you Connecticut for loving our baby girl like you do!! We are so honored!

As for fun and exciting news, Dave and I got to go on our long anticipated bingo-winning cruise! It was truly everything we dreamed it would be (though I really wish that the ground would quit swaying for me now that I've been off the boat for over 5 days now!). We sailed the Eastern Caribbean and loved it all! I think this may be the first time our family has ever really seen me tan - though Dave just has to look at the sun and he turns brown. After we boarded the ship, we were standing up on the bow and I noticed that the boat in front of us was named the "Madeliene". I was delighted to think that she was with us in spirit, and that maybe, just maybe, God allowed her to watch us enjoy it all. We went snorkeling (for the first time ever), horseback riding through the surf, and even signed up for the stingray adventure! It was all such a delight to our hearts and refreshment to the souls. I couldn't help but see the finger prints of God all over that place, and especially when my head was underwater oohing and ahhing at His marvelous creation (something I was doing literally, only to find out later that Dave could hear me above the water! Ooooh embarrassing!). Someday we'll do it again I hope, but with the kids. How we'd love to show them all that beauty first hand!


The Lester's and Lester's and Berry's

March 27, 2009
 
Guess what?  We are hitting you all up for blood once again!
 
Next Saturday, April 4th, in honor of what would have been Maddie's 5th birthday we are having another blood drive at the church and would love to have anyone that's not too squeamish come out!  They will also be doing a toy drive to collect presents to be delivered to the children over at Children's Hospital.  We would love to have any and all come out for this now 2ND ANNUAL event (hard to believe that that's even possible!).  There was many a time in the hospital that the blood supplies were low and it was questionable whether or not Maddie could get the amounts she needed.  It was through these nail biting moments that it was driven home to us just how critical these blood drives are - and so we hope that you will join us "giving the gift of life"... It's so true, we know it first hand!
 
Saturday - April 4th, 2009 from 10 - 4 pm at Cornerstone Church.  To make an appointment call the church at 697-3777 (or you can just show up and take your chances - they are closed for lunch from 1-1:45).
 
Check back here on Maddie's birthday (April 7th) for a surprise . . . and NO I'm not having a baby!

April 7th, 2009 (Maddie's 5th)

Today was Maddie's 5th birthday and we still miss her little spirit as much as ever.  I cannot find the right words, but Cindy has been so good at keeping with the updates.  With the help of our church, we continue to celebrate her life with regular blood drives and an annual toy drive for the hospital.  Thanks to everyone who gave.

Cindy has been working on a book project that was published and delivered today.  The book is dedicated to Madeline and bears her picture on the inside cover.  I am so proud of Cindy for her creativity and dedication.  It is just awesome!  This is what the book jacket looks like:


Anna and Sam are on the back cover.

Dearest Madeline,
Happy 5th Birthday my little one! We can only imagine what an amazing party you must be having and we look forward to the day when we can celebrate together once again! It's been hard to try to figure out different ways to "remember you" - as if there were any moment of any day that we weren't actually thinking about you!  But on special days like these we try so hard to find extra special ways to let you know what an indelible mark you have left forever on our hearts.  Both Daddy and I were so blessed on Sunday at the blood drive to both be able to give blood this time!  The toy drive was awesome (Sam and Anna loved going to the store to help pick out toys for kids at the hospital) and I'm sure there will be a lot of happy children when they see all those goodies.  However, my biggest gift to you this day is in the book that I was able to co-author with your best friend Hannah's Grandma.  This "Great Adventures" book is dedicated to you my precious, that your legacy may live on through the proceeds to the Children's Heart Project.  Shine on Madeline!  Happy Birthday.  We love you . . . to the moon and back.

---

Leave a message for Madeline & Family


 

A Different Kind of Heart Surgery

We have so much we want to say to everyone, so many thanks, so many stories to tell, so many miracles to report, not just in Madeline's life, but in the lives of the families that surrounded us.  So many people have commented on the strength of our family during this ordeal.  "What a testimony of faith you have been to each of us."  "You have to be the strongest parents I know."  "We've been touched by your walk of faith."  "You are truly an inspiration to others."  Perhaps the greatest thanks we can give is the revelation of where our strength comes from.  Most of you already know this, but just in case there is any doubt, the foundation of our strength is not technology or medical wonders or positive energy or karma or the way the stars are aligned.  Our strength comes from the hope we have in eternal life through Christ Jesus.  You may be thinking just now, "Is Dave really going to exploit Madeline by an attempt at evangelism?"  You bet I am.  What is your source of hope if not in the creator of all things?  No, we are not strong at all.  We do not rely on God to give us strength, but rather to be our strength for us.  Frankly, I think the strongest ones are those who face circumstances like this without God.  I do not know how it is possible.  You are the audience to whom this is offered.

I am not asking anyone to have 'blind faith.'  I certainly do not.  Someone once said, "Faith is not stumbling in the dark.  It is walking to the edge of all the light you have, and taking one more step."  I believe the bible to be the inspired word of God and a historically accurate account of the life of Jesus.  Consider what it says:

Romans 3:23
"For all have sinned and fall short of the glory of God"

"All" includes you, me, The Pope, Billy Graham, Mother Theresa, Moses, all of Jesus' disciples, your neighbor, your neighbor's neighbor and everyone else in the history of humanity.  Because of Adam's sin, we have all inherited a sin nature.  You may not think that is fair (I struggle with it), but it cannot be denied.  There is no one 'good enough' for God.

Romans 6:23
"For the wages of sin is death, but the gift of God is eternal life in Christ Jesus our Lord."

God is just.  The punishment for sin is death.  However, He is also gracious and provided a savior.

John 3:3,5
"I tell you the truth, no one can see the kingdom of God unless he is born again."  "I tell you the truth, no one can enter the kingdom of God unless he is born of water and the Spirit."

Jesus makes it very clear that we are all born into this world with a propensity to sin, and with that alone we are lost. 

John 14:6
". . . I am the way and the truth and the life.  No one comes to the Father except through me."

Acts 4:12
"Salvation is found in no one else, for there is no other name under heaven, given to men by which we must be saved."

This is the tricky part.  I know this rubs folks the wrong way, but there is no disguising the truth.  All roads do not lead to heaven.  All religions are not the same.  If you blindfolded a hundred people, spun them around and asked them to point north, you would probably find one hundred arms pointing in one hundred different directions.  It wouldn't really matter which way they pointed, or who was closer, there would still be only one true north.  So it is with salvation.  Jesus said it Himself.  In fact, of all religions He is the only one to stake this claim.

How can you be sure?  How can you be saved?  How can you overcome death?  Healthy living?  No.  Wealthy living?  No.  Doing more good than bad?  No.  The instructions are simple.

Romans 10:9
"That if you confess with your mouth, 'Jesus is Lord,' and believe in your heart that God raised him from the dead, you will be saved."

1 John 5:11-12
"And this is the testimony: God has given us eternal life, and this life is in his son. He who has the Son has life; he who does not have the Son of God does not have life."

Where is God?

Revelations 3:20
"Here I am!  I stand at the door and knock.  If anyone hears my voice and opens the door, I will come in and eat with him, and he with me."

God does not crash through your front door and drag you into salvation.  Rather each of us has the freewill to do as we please.  God seeks us all out, and waits patiently for our response.

2 Corinthians 5:17
"Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come."

God wants to eradicate sin from our lives.  When we place our faith and trust in Him and repent of our sins, our history of sin is erased.  God then dwells in our hearts.  This is what it means to be born again.

So no matter what your station in life may be, whether you are the butcher, the baker or candlestick maker, it is a temporary assignment.  Even a healthy, four chamber heart will not sustain you forever.  Medical miracles may delay the inevitable, but all the medicine and surgery in the world cannot promise you eternity.  Only through the blood of Jesus Christ are we saved.  It is so simple.  It is so easy.  Best of all, you cannot earn it.  It is free.  That is why it is called a gift.

John 6:47
"I tell you the truth, he who believes has everlasting life."