Mommy's Letter to William Ethan Morgan

My dear sweet baby Will,

I loved you before you were even conceived.  I will never forget the moment I knew you were growing in my belly.  I was singing and dancing and could not wait to share the news.  I thanked God for you every day and focused on loving every moment that we had to share.  My heart grew over the past 10 months to allow me to experience a love that I never knew possible.  Each day my love for God grew because of the miracle he allowed us to share.  I had more love for your father who cared for the two of us with more dedication and concern than I had ever seen.  I had more love for you who brought more joy into my life than I ever knew possible.  Yes the past 10 months have been the best 10 months of my life.

I know that you are with God today.  I may not understand his plan but I do know that if he needed someone full of love he choose the right boy to help him.  Your daddy and I love you so dearly but that is just the beginning.  You have grandparents, aunts, uncles, friends, and even perfect strangers who have been moved by your journey.  You, my sweet precious William, have in your short little life been loved more than many who have very long lives.  You have inspired so many of us to be better people and to make the most of the lives and our physical health that we sometimes take for granted.   We are so very proud of you.

I am your mommy and you are my son - the son that I prayed for and loved while you were here on earth.  I know that I will long to have you in my arms until the day I see you in heaven.  Until then, I must accept that you are with God in a much better place.   As hard as we tried to keep you to ourselves it looks like God too knew that you were an amazing person even before you were born.

Daddy and I will always love you.  

Hugs and Kisses,


Wednesday, August 20, 2008

William Ethan Morgan Born 8/19/08, Passes away

It is with great honor, pride, love, and respect that we fought alongside William Ethan Morgan against CDH.   William is one of the bravest people ever to grace humanity, and fought against CDH with dignity and courage.

William Ethan Morgan has touched more people in his one day of life than many people do in a lifetime.  Through his courage,  family's fighting CDH are able to hold Baby Will up high as one of the best examples of dignity, love and determination in this world.

Heather and I were joined by our family as we stayed at his bedside throughout his final fight over the last evening.  Baby William passed away late this morning, family at his side.

The below photograph was taken at his final battleground, in the CHOP NICU.  Our family was at his side, with Heather powering through an all night vigil at Baby Will's bedside  (Heather has been awake for 72 hours straight.)    The CHOP team made countless attempts to adjust his oscillating ventilator, his medicine, and his oxygen/nitrogen mix.

The below photograph is Heather holding Will in his final moments, still connected to the NICU treatment equipment.

The below photo is Baby Will and his father connecting in person, in his final hours.

Baby Will's NICU battle ground, with the equipment sustaining his battle against CDH.  His mother is right at his side.

This below photo is of Baby William connected to the Oscillating ventilator.

In the below photo, Baby William Ethan Morgan is being looked at by his father in his final hours of his battle. 

The below photo is a close-up of his precious face.  You can see God in his eyes.

Below is Baby William, free of his battle equipment.  Clean and Beautiful.  He weighed 11 lbs at his passing.  He was not weighed at his birth.

Special thanks for family and friends who have been providing unending support of William     Your love and compassion will be felt by us for rest of our lives.

He is with God now, in a far better place than he could ever be.

We will be hosting a Memorial Service in Atlanta the week of August 25th.  We will post the details later in the week.


Tricia said...

Thank you for sharing your beautiful son with us. My heart aches for you. Please know that you are in our prayers.

Love, The McDaris Family
(with CDH baby Cadenne)

Jennifer said...

I am so sorry for your loss. Your precious boy fought valiantly, but he looked up and saw Jesus, and it took Will's breath away. You are all in my thoughts and prayers.

Holly said...

I am so sorry for the loss of your beautiful son, Will. I wish I had better words to offer or a way to extend a huge hug to you both. Please know that we thinking of and praying for your family.

Best Wishes,

The Centurino Family

(Blair is our CDH baby).

beverlyjl said...
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beverlyjl said...

I am so very sorry for your loss. You have been in my prayers and I continue to pray that the God of all comfort will hold you in his arms during this difficult time.

Liz Rich said...

I am so sorry for your loss. My heart is breaking for your family--praise God that we could all be touched by this beautiful child. I am honored to have prayed for him during his fight. May God give you peace and understanding during this difficult time.

kmm0305 said...

Will is absolutely beatiful and blessed to have such wonderful parents. He will be remembered as a valliant fighter. Our prayers go out to you and your family.

(mom to Leah R-CDH)

mummy to angel SKYLA said...

Heather and Matt, i am so sorry for the loss of your precious baby boy William Ethan Morgan. Thankyou for sharing his story with us. He was so beautiful.

Lots of love
Kristy and family
mummy to angel ^^SKYLA^^ LCDH

Tracy Meats said...

I am so very sorry for your loss. My heart is breaking for you--Heather and Matt you are in my prayers. God bless your precious angel.

Tracy Meats - mom to Ian (LCDH, 4/3/04)

Kenny and Jennifer Miller said...

I'm so very sorry for your great loss. Will was such a fighter, thanks for sharing him with us. Your family is in our prayers.

Jen Miller

Mandy Li said...

Heather and Matt, we are so saddened to hear that William has passed, but we know in our hearts that he has gone on to a better place. We love you both very much. -Mandy & Charlie

Bob said...

Our thoughts and prayers are with you both and with William. We love you all so much. This must be so hard for you. Just when our hopes were so high, for this to happen. I wish it had been otherwise.

Murat Aksu said...

Matt and Heather,

We are very sorry to hear about your loss. Will looks like an angel in his pictures. We are certain that he is with God.

Aksu Family

JoyandLuke said...

3 of you are in our thoughts and hearts. Joy and Luke

Our Home Team said...

We are just heartbroken over your loss, but we are so glad you could be right there with Will. Will was such a beautiful baby, and we know he will always live on in your hearts. We will think about both of you as you deal with this during the coming days.
Be strong.
Carole, Bob and Drew

Anonymous said...

We are so sorry for your loss. Thank you for sharing William with us and for allowing us to be a part of your CDH journey.

Know that we are here for you if you need anything.

You are in our thoughts and prayers!

God Bless,

Amy AKA "Baba" said...

My heart aches for you at this time of loss. William has touched so many people and he will continue to do so. He was an amazing fighter. Your strength and love for your precious boy has touched so many people. You will be in my continued thoughts and prayers.

Dotty said...

Oh Heather and Matt! i am sooo very saddned by this post, my heart sank. words cant describe the emotions you have and the feelings. im so sorry, i wish i could say more, could hug you. please know your precious Will is an angel among you now and he will always be by your side, just as you were with him. God Bless, and heal your broken hearts!
mom to zachary lcdh 10-26-07

Candice said...

Baby William is beautiful. Thank you for including us in Will's fight and he will forever be in my heart. Love you guys.

Elizabeth said...

The only thing I can really say to help - few people see angels - you have pictures of one and held him in your arms.

Thank you for sharing - I am honored to have known him - and you both too.


Anonymous said...

My prayers are with you. Baby Will was such a brave, beautiful soul and lucky to have such wonderful people as parents. Please let me know if I can do anything.

Jennifer Fall

Arya said...

We are so sorry about your loss. You are amazing people and your journey, along with Will's fight have been nothing short of miraculous and inspirational. You have all our good wishes and prayers. He was beautiful and strong and will never be forgotten.

Arya & family

Tina West said...

Matt & Heather,

I'm so sorry for your loss. We will hold Baby Will in our hearts. Thanks for sharing your journey and your son with us.

We are lifting up both of you and your entire family in prayer during this difficult time.

Tina West
(mom of CDH baby Ella West)

About Us said...
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About Us said...
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Chris said...

August 20, 2008
Dear sweet and beautiful William Ethan Morgan,
I write this as I struggle to accept your passing:
For three months, I have been in denial that this medical condition would be able to take your life. I took for granted that you would have a successful surgery and join us for many years to come.

Now, I regret that I won’t ever hold you and kiss you and smell the top of your newborn head. I, like many other of your loved ones, each had so many dreams of life with you. We feel sorry for ourselves and also a bit angry at times. We all know that this phase of grieving feels selfish, but is normal. It hurts so much to let go of our expectations and of you.

You won’t be playing with trains or planes, like I had envisioned.
Yet, will you be with the angels on the sides of real trains and planes, keeping the passengers safe?

You won’t be playing with building blocks or finger paints,
but will you help push the clouds into different formations so that we can marvel at the beauty of the sky? Will you play with the northern lights twirling their gaseous colors like a giant kaleidoscope? Will you zoom between the stars to galaxies far away? Will you go where no man has gone before?

Will you be someone’s muse to inspire great works of literature or song?
Will you sing in the celestial choir of angels?
Will you help steer people in the right direction on their quest for truth and knowledge?
Will you help guide others to their heavenly resting place?

We can’t imagine what your life will be like now. I know you have a purpose, a job.
The unknown is scary for us, but I hope that you are not scared.
I cannot hug you now, I would if I could. But God holds you in the palm of His hand.

Your personality, your essence, your soul is known only to God now.
I am certain that you have the grace, serenity, and gratitude of your mother, and
the excitement, determination, and passion of your father.
I know that you have strength and sweetness, because you were so sweet and strong to hang on until your parents had a chance to hold you in their arms.

Take flight William! Cherish all of the wonders available to your spirit.
Enjoy your time with those loved ones who have gone before.
I believe that we’ll see you again in spirit.
I will think of you whenever I see a plane or enjoy the pictures in the clouds.

Missing you, Aunt Chris

Anonymous said...

What a beautiful and precious child. You are so blessed to know him - if only for a day. How truly lucky he is to have left this earth surrounded by so much love. Your family will be in my thoughts and prayers as you try to heal from this tragedy.

Joe and Tracey Burdette said...

Words can not describe how one feels when they loose a child. There are no words that will make the pain go away. My husband and I have felt this pain since February. We lost our son to the same battle. All I can say is that we both know what it is like to hold an angel in our arms, not everyone gets to do that. Please know that you and Matt are in my family's thoughts and prayers.
mom to RCDH angel Andrew

PineapplePrincessMama said...

I wish you peace during this unimaginably difficult time. Will was a beautiful boy and I thank you for sharing your journey with us, many of us perfect strangers.
My heart is broken for you, Morgan Family.

With love,
Libby Cohen
Mama to Makena, LCDH

Aep said...

I am so sorry for your loss.
May God bless and protect you all in this difficult time.
Pena Family

Cinda said...

What you did for Will, just shows what amazing parents you were and will be. This is how I grew up, with my parents being there for me no matter what. It makes me realize I take that for granted, and today and I regain a feeling for intense gratitude. Heather, you and Matt are so special, and role models to us all. Cinda

Travis Family said...

We are so very sorry for the loss of your beautiful son. Thank you for sharing the precious time you had with him, with us. We are praying for you and your family.

The Travis Family

Gina said...

We are so sorry for your loss. Will made a HUGE impact in this world during his time on Earth and it's because of his wonderful parents sharing his story with us. You will be in our prayers.

Wyatt's Family

Gena said...

Just wanted you to know that I have been praying for Will and for you. Thank you for sharing your courageous journey. Know that faith will see you through.

Love and prayers,
Gen(momma to Peyton RCDH 4/18/07)

Brad, Kellie, Lucy and Baby Carter said...

Thank you for sharing your fight with everyone. We are so saddened by this news and pray that you will find peace.

dmbrehmer said...

Heather and Matt - thanks for sharing Will and your journey with us. What a beautiful child and two incredibly strong and loving parents. There are no words to express the sorrow, only the holy spirit to comfort, and a secure knowledge that Will is with our God in heaven. You all remain in our thoughts and prayers.

The Brehmer family

Sandy said...

I am so sorry for your loss. There are no words to describe the sadness felt, but only know that you, Baby Will and your family are in my prayers, my thoughts and my love.

Angela said...

I'm so sorry for your loss. My heart goes out to both of you and to William. I'll be praying for your strength to make it through this very trying situation. Thanks for sharing your moments with us. William's story has been a blessing to me in more ways than you know. Love you both - Angie

Katie said...

Oh Heather and Matt,
I am just so sad to hear about Baby William. He is absolutely gorgeous. Thank you so much for allowing us to know him, he has touched my heart deeply. The three of you are in my thoughts every day.
All our love,
Katie and Chris

Missy said...

I am so sorry for your loss. I love you both and will continue to pray for peace, comfort and strength for you and your families during this difficult time.

Megan Larson said...

Heather and Matt,

When I got home today and read your post title, I gasped and then cried my eyes out for your loss. When I finally was able to compose myself again, I read your post and marveled at how beautifully written it is. You have such a way with words and it was really uplifting and so true--Baby Will is in the most amazing place, so beautiful that we couldn't even imagine its wonder. And such a gorgeous child! Takes after his loving, strong parents.

I have no idea what you must be going through. Just know that I am praying for your family and hoping that I could endure such a tragedy with half your grace. Your bravery and positive attitude throughout this entire ordeal has been such an example to me, and even as you were coming close to your due date you were still posting on my carepage and cheering me on.

Heather and Matt, you are in my prayers and I will be coming back many times to your blog to see how you all are doing and offer my virtual hand and shoulder in comfort.


Megan Larson in Alaska

Liz and Shane Nelson said...

Heather and Matt,

I cried reading your news today. You are in our thoughts and prayers. I hope I have your strength when I am delivering Nayeli.
Liz Nelson

Robert and Lori said...

Matt and Heather,

We are broken hearted for you and your families. Little Will was a such beautiful baby! Though he was with you for a short time - he was loved and cherished and always will be. We will be praying for you and look forward to seeing you when you get back home.

Love, The Hipps

Brian and Cassi Reed said...

Cassi and I are hurting with you and for you I feel as though baby Will was part of our family. We are praying for you and your family.

With Love and prayers,

The Reeds
(With CDH baby Elli)

Rosie said...

Matt and Heather,

I am sorry to hear the news. Thank you for keeping everyone so updated and for sharing Will with all of us. We can all draw inspiration from Will and you. We are praying that you may find peace and renewed strength.


The Sinclairs said...

I've never met you guys and I probably never will, but I came across your blog through several links from other friends of mine. God has certainly allowed me to find your blogspot for a reason. I have been praying for your family... you have been such an example for me. will was a precious person. It's so hard to understand when things like this happen. I pray that you will find your strength in God and allow Him to carry your pain. Please know that I'll continue to lift you up in prayer. He is truly now "God's Will."

FaithCDH said...

My heart breaks for you. You are very right when you say that he touched more lives in his short time than we could ever do in a lifetime. I will be keeping you and your family in my thoughts and prayers over the coming hours, days, months, and years.

Amy Miles
^^Faith Grace Miles^^

Megan said...

Very sorry to hear of the loss of your son. What an amazing fight he gave. Thank you for sharing your story. Your family is in my thoughts.

ryandv1 said...

My thoughts and prayers go out to you and your family. William must have certainly felt the love, strength, and devotion you and Heather demonstrated and been comforted by it during his time in this world.

With love,

Ryan and Brian

furlong3883 said...

Heather and Matt,

I am so incredibly sorry for your loss. Will is beautiful -- you saw this while he charmed you in the womb, you saw this as he fought so hard for his time in your arms, and you know this now that he is gracing Heaven and your hearts.
Let Angel Will look over you now in this difficult time, as you so incredibly looked over him. And take comfort in knowing that you will see him again in a more peaceful place one day.

Fer said...

I'm so sorry for your loss. He was just too beautiful to this earth.

Marty said...

My and Hope's heart aches for you both. We are sending this to our prayer lists and friends, so please take any comfort you can in knowing that many are trying to share your burden.

William was and is a fighter. Being just like his mom and dad, he touched our lives monumentally in just the short time he spent with us.

We love you. William will always be a part of your and our family.

Angels like him are so precious. He will be in heaven praying for you. You will see him again someday without pain, without fear.

May God provide you every comfort you need. Please reach out to us for anything. Day or night.

Mark and Zee said...

Heather and Matt,

We are so sorry for your loss. He was such a beautiful, strong, perfect little soul, and he looked so at peace. Thank you for sharing him with us all. Your strength is an inspriration, and our prayers continue for you and your family.

Mark and Zenobia

michael.haymond said...

Heather and Matt,

Viewing the pictures of Will and of your loving care of him in his final hours reminded me of the scripture found in Matthew 25:40. Christ said, "Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me." Your love and service towards your son was truly Christlike. It is now the Lord's turn to take care of Will until your sweet reunion with both of them.

Thank you for your marvelous example of love, commitment and dedication. Please know that our thoughts and prayers are with you.

God bless you with peace and comfort.

The Haymond Family

j2c2hap said...

I happened upon your site after reading several other blogs that I found on A Rainbow of Hope. I have been reading your blog now for over a month. Your situation reminded me so much of our own in 2005 when we were expecting our CDH baby.
William is absolutely precious. I feel so blessed that I was able to get to know your family thru reading your blog.
I am deeply sorry for your loss. May your friends and family continue to be there for you during this difficult time. Your family is in our thoughts and will remain in our prayers.

Parents of Jebediah (CDH baby born 2006)

sept28 said...

Heather and Matt, our condolances to you at this time. We are sorry to hear of William's passing. You are in our thoughts and prayers.

This Is Not The Life I Ordered said...

I am so sorry for your loss. Know that you are not alone in your pain and grief. I lost my my little angel Ethan William James to CDH just a few weeks ago on August 1/08 at 7 weeks old. I take comfort that our boys are together in peace. Take care of are in my thoughts.

mom to angel Ethan

David and Sosaan said...

You guys are brave beyond comprehension and you should be very proud of yourselves! William cannot have asked for more love and fighting spirit from two amazing people! In your grief please find comfort in your own heroic actions as parents and partners committed to success. God bless you both as you deal with your huge loss! We are all here to support you in any way we can.

Chalkie said...

I am so sadden by your great loss. Lost for words and cannot begin to understand how you are both feeling. You are both outstanding individuals and together a match made in heaven, your little boy will always be proud of the fight you both endured for him. You are all in my thoughts.
lots of love

Sharon Kaufman said...

We are so sorry for your loss. May God bless and protect you all at this difficult time.
Lots of love,
Adam and Sharon

Anderson said...

Thank you for sharing precious Will's life with all of us. We are truly very sorry for your loss. Please know that our thoughts and prayers are with you, Matt & your family.

Ethel & Dan

Church Family said...

It is amazing how will has touched so many lives around the globe. We have marveled at your amazing love and strength during this time. Will felt more love in his short life than many will ever experience. We are so sorry for your loss. Know that you are being prayed for by many.

Janet and Dale said...

Will was a beautiful babyboy. Take peace in knowing that he will be watching over you and your family. I am so sorry for your loss.
Janet and Dale

Janet and Dale said...

Your baby boy is beautiful and he was so very lucky to have you both as parents. Take peace in knowing that you have a guardian angel watching over you. I am deeply sorry for your loss.

familyofpikes said...

We are so sorry for your loss. Words cannot express how deeply sadend we are. You are in our thoughts and prayers constantly. Thank you for sharing your beautiful son and story with us.

Thoughts and prayers,
Aunt to Jack CDH & ECMO

Owain's mommy said...

Thank you so much for sharing William's battle with CDH. He is so beautiful and lucky to have two loving parents.

William may have only been here for a short time but he has touched so many people. He will never be forgotten.

Owain mommy LCDH

Rita said...

Our dearest Heather and Matt! There are no words to explain how sorry we are...sorry is not the right word either - we want you to know that we are right here next to you. You are so strong and you fought this battle until the very end. We are proud of you and love you so much!

Rita and Alex Chernyak.

Anonymous said...

What a beautiful life. Thank you for helping the world to better understand CDH. Your family has touched so many lives. Peace be with you all during this difficult time, The Jackson Family

KR said...

We are so sorry for your loss. We write this with a very heavy heart. Our thoughts and prayers are with you both and with Baby Will.

Love, the Rosario's

Nancy L said...

I am so sorry for the loss of your precious son. He is so beautiful, and you are right, I can see God in his eyes. Please know you are in my prayers. I am a great-aunt to baby Elli Reed who also was born August 19th with CDH and wait anxiously she is having surgery this afternoon.
I hope you can find some comfort knowing there are others out there holding you in our hearts.

With love and sympathy,
Nancy Lewis

Mattie said...

I am a friend of grandmother Argiro from Louisiana...
I am so sorry for your loss.
He was a beautiful boy.
Your family is in my prayers.
Martha Laque

valerie weager said...

Matt & Heather - I am so sorry for your loss and my heart goes out to you both. Will was a beautiful little boy and I'm glad you were able to spend a little time with him. Thank you for your strength and for sharing this experience with everyone.