Friday, January 1, 2010

Leah Has Her Wings

I know most people have found out by now in various ways but, yesterday morning around 9:45 my beautiful little baby Leah got her much earned butterfly wings. 

I'll try to write more later about everything, including how we are holding up (which for right now is as well as could be expected). 

We still don't really know what happened.  Somewhere around 5:30 AM her heart stopped and she stopped breathing - she was resuscitated and sent to the PICU.  From there it all went down hill.  She was given blood, epinephrine, steroids ............ nothing was helping.  Around 9:30 the nurse couldn't get a blood pressure on her and we knew it was time to stop.  The Leah that was laying on that table was not MY Leah.  It looked nothing like her - we knew the real Leah was already gone.  She was given 2 doses of morphine to ensure she was pain-free. 
So please know that she was not on an uncomfortable hospital bed with strangers around her pumping foreign things into her little body during her last minutes.  We had them take the ventilator off and disconnect the IVs and she was placed in my arms.  My little fighter stayed with me for a few minutes - battling until the very end.  I just rocked her and told her: "No more pain, no more blood, no more hospitals, no more EB".  All I ever wanted for her was to be pain free and happy - and this is the only way that could've happened.  I know she's in heaven - EB free and beautifully perfect.  I know all my grandmothers and great-grandmothers are passing her around, loving her.  I know she's smiling that Leah smile with those big blue eyes.  She will never be alone and will never be in pain again.  I know she'll always be with me, watching over me - and I know I will see her again some day and I'll be able to hug her as I never could here. 

Golden slumbers fill your eyes
Smiles awake you when you rise
Sleep pretty darling do not cry
And I will sing a lullaby

117 comments:

Christina said...

I am SO sorry for your loss. Words just cant adequately express the pain I feel for you.

Godspeed Leah.

Linda said...

My darling daughter:
No words can express what we are all feeling right now. You and Jeff did an incredible job taking care of this precious little girl.
No more pain, No more EB. She is finally at peace. We love you guys so much and feel your pain. I feel truly blessed to be Leah's Nana. Love you guys so much. Love Mom

Miranda said...

Precious beautiful Leah. Your being on this earth has made it a better place. I will never forget you. Thinking of your beautiful parents and Grandparents who loved you so.

Anonymous said...

I don't know you guys but I have been stopping by here when I leave Jonah's blog. I am very sorry for your loss. When I read this post tears just started to run down my face. Just know that Little Leah is in a much better place looking down on you guys. She will be missed by everyone who reads this blog. Little Lady Leah Has Her Wings" your right

LoveLladro said...

I read the news on Patrice's blog and I am just so so sorry. I know she is at peace and that is a wonderful thing but the hurt she leaves behind is very real. I am heartsick for you and I'll be praying for your family.

Jessica said...

Leah is a beautiful angel...just continuing to pray for you and your family.

Mom to 4 Sweeties said...

I know of Beautiful Leah from Jonah's blog and am so very sorry for the loss of your sweet angel baby. God bless you all.

Mom to 4 Sweeties said...

I know of Beautiful Leah from Jonah's blog and am so very sorry for the loss of your sweet angel baby. God bless you all.

Pam, mom, honey, said...

Praying for strength and understanding. I am so sorry for your loss, so very sorry, I am also rejoicing that she is pain free and that we serve a mighty God who may be rocking that precious baby. when we lost our baby I recieved a card that had these words.
Job 1:21
it says:
" I was thinking abut what's ahead for the baby. Can you imagine-it will be
taking its first steps on the streets of Heaven! Hannah was a mother who
certainly knows how special a little baby is. Perhaps she'll be the one who
will let it hold her finger as it takes those first staggering steps; and
maybe she will be the one to coax it into taking it first steps alone!
Perhaps Dorcas will see to it that its hems get let out, and that the
buttons are sewn on that growing child. And Joshua! Just think what it would
be like for a child to climb into his lap and hear-first hand- about the
battle of jericho!..
Maybe Petrer will take it fishing someday! It will never fall out of tree or
breaks it's leg, for there is no pain or tears there! It won;t be afraid of
the dark for there is no darkness there. The King of Kings, the Lord of
Lords, he is the very one who said, "let the little children come to me." I
expect there will be many a time when he himself will take that baby in his
lap and let it know a love that makes all other loves seem puny by contrast.
I wouldn't be surprised if the Heavenly Father keeps a few lollipops handy
for just such occasions....
And one day, you will be greeted with a " Hi Dad and Mom! I've got some of
the neatest things to show you; and some really fantastic people i can't
wait for you to meet."

Susan said...

I am a friend of Penny & Gary Smith and have been following Leah's blog since you started it. I am so very sorry for your loss, but as been said by many, she is in a better place, pain free and enjoying her new wings of life. My prayers will always bee for you and your families and for God's newest angel Little Lady Leah.
Susan Smith

Mommy Attorney said...

Praying for you and your family. May the Lord bless you and keep you.

Anonymous said...

I came here through Jonah's blog. It broke my heart to learn about Leah. I am very sorry for your loss. What a comfort to know she is with all the saints in heaven. Keeping you in my thoughts and prayers.
NonnieM

Jimmie's Auntie Amber said...

There are no words . . . I just wanted you to know one more stranger hurts and is praying for you.

Anonymous said...

I cannot imagine the pain you are feeling - know that lots of prayers are being said to help comfort you in the days ahead. As you said, no more pain - no more EB. I only learned of your situation recently through Jonah's website but I pray for all families dealing with this disease. You are all wonderful parents caring for these special children.

Wanda Wilkinson said...

Here from Jonah's blog, I have been following Leah's story since Patrice had posted about Leah.

Love & prayers are being sent you way. May God provide you the comfort & strength that you need to get through this time.

Love Wanda

Timothy said...

I am So Sorry for your Loss of your Precious Leah!! My heart and thoughts are with you *HUGS* There are no words.

Anonymous said...

There are no words to express my sorrow for your loss. Your family will be in my thoughts and prayers. May God watch over you and bring you peace.

Kelli said...

I am still praying for you all!!

Melanie said...

Leah was loved by so many - what a beautiful little girl!!! I loved your post. Leah was a fighter and definitely earned her wings!

jandkland said...

I found your blog from Patrice's and have kept up with you for a couple of weeks. This kind of news is shocking, bewildering, and incredibly painful. I can't even begin to imagine what it's like, as a parent, to watch your child bravely endure so much suffering for so many days and then to lose her on this earth. I pray for you to cling to each other during these initial days and in the days to come. There is nothing fair or right about this disease, and I pray that Leah's precious life helps to bring more recognition to what these children go through. I pray for the peace of God, which passes understanding, which makes no sense in times like these, to fall over you somehow. Thank you for letting us know Leah.

--Kelley in GA

Anonymous said...

No words to say how sorry we are on the loss of your beautiful baby girl.Praying for you in the days ahead.

zannnave said...

I am praying for all of Leah's dear family.

Jill said...

Oh my goodness, I am just in shock. Have been following and praying for a few days now, thanks to Jonah's blog. I want you to know that I am praying for peace, comfort, hope and mercy...

Laura A said...

Hi Meghan-

I'm a follower of Jonah's and found out aboout Leah from Patrice. I just wanted to tell you how sorry I am for your loss, but am glad that precious Leah is not hurting anymore. May God grant you the peace and strength that only He can give to get you through this time. I'm praying for you from TX.

Laura

Hilary said...

I'm sorry....praying for your family.

Anonymous said...

I am so sorry for your loss. From one mother to another, know we are thinking of you.
Emily-North Dakota

jenniferO said...

There are no words to offer, just that I'm praying for you! I've been amazed by your strength from day one and I still am reading your current post!

Nancie said...

We are praying for you and hoping you continue to feel the presence of God holding you in His arms.

jenniferO said...

There are no words, just that I am praying for you and your family. Your strength has amazed me from day one and still does! I don't "know" you but I love you all and I'm so sorry for your pain!

Jenny loves Louisiana said...

Oh Dear I dont know you but I must say you are such a very STRONG Mommy!! I am sorry for your loss. I know you sweet baby is at peace and is loving her new wings.

2SetsOfTwins4Me said...

I have never commented before but just wanted to send my condolences. I am so sorry for the loss of your baby girl.

trying4two99 said...

Words cAn't express how I feel. I used to know NOTHING about EB and now I know the pain. Your child touched many in ways you could never have imagined! I found your blog through Patrice's aka Jonah/Gabes... Know that the Angels make special trips for children of GOD. I'm praying for you and the rest of your family. May God bless you in incredible ways.....

Jennifer in GA

Ellen said...

I am so sorry for your loss! I am praying for you all! There really are no words to speak!

mooneyequalsmc2 said...

We heard, yesterday, from Patrice's site and are absolutely devastated for your loss but fully understand, and believe, in the glorious healing of Heaven so we know that Leah is in perfect body and knows a happiness that we will never ever know on Earth.

You and your husband ( and all parents of EB children) are some of the toughest, fiercest and most amazingly dedicated parents ever given a child. You both showed Leah such tender love and care and her time on Earth was certainly far better because God gave her to you and Jeff.

Again, I am soooooo sad for your loss.

Mandi @ It's come to this said...

I came from Jonah's blog and have followed you the last few weeks. I am so incredibly sorry for your loss. Thank you for sharing Leah with us and know that many strangers are offering sincere prayers of comfort & peace on your family's behalf.

Will and Staci said...

My heart is broken for you. I stumbled upon your blog and I can't express to you how much my heart goes out to you. We're praying for you and your family. Keep comfort that she is in God's hands and has a perfect body now.

Melissa said...

So very sorry for your loss. What a beautiful little angel Leah is and she's brightening up heaven right now with those beautiful eyes. Parying for peace and comfort for you and your family.

diorella said...

I'm sorry for your loss. Just keep in mind that Leah is in a much happier pain free place now.

God bless.

-T said...

Hush Now Baby Don't You Cry, Rest Your Wings My Butterfly....

I'm so sorry for your loss. No more pain, no more EB.

Bubeaner said...

Please know that prayers are being lifted for you and your family. May the grace and healing power of God be with you.

-T said...

Hush Now Baby, Don't You Cry
Rest Your Wings My Butterfly...

I'm so sorry for your loss.

Amanda said...

I am so sorry for your loss. Please know I will be praying for your family in the days and weeks to come.

I've never met you, but now our children can play together in Heaven at God's feet.

Amanda

Marian said...

Meg,

There aren't words..your angel is in good hands. I was talking to your Mom and told her that Leah's great grandpop was waiting to tell Leah stories about Nana, and that made her laugh.

You guys are always in our prayers!
Deepest sympathy

Marian, Jim and Zush

Holly W said...

I found your blog through Jonah's blog and had been reading about the surgery. I am so in shock that Leah has passed away. There are no words to express my sympathy. God bless you and your family.

Anonymous said...

In Tears as I read your update.I am so very sorry. Leah was so loved and happy. I am sure you feel numb with the lost. Praying for you.

Anonymous said...

In Tears as I read your update.I am so very sorry. Leah was so loved and happy. I am sure you feel numb with the lost. Praying for you.

Sara said...

I'm so sorry

Carol said...

I know how much you love Leah....I can see it in your words and photos and videos. I can not know how much pain you are feeling, but you wrote such a beautiful post today. You have touched MY mom and grandma heart. Bless you as you continue on this earthly journey with Leah in your arms....but ALWAYS in your heart!

Jessica said...

I'm so sorry for your loss. We will be praying for you and your families.

Franchesca Cox said...

I am so sorry. Prayers and love

XOXO

Cara said...

Praying for your sweet family during this difficult time. Leah is precious and is loving heaven right now. May God bring you comfort and peace and may you feel His overwhelming presence.

Cara in Fort Worth,TX

Rachel said...

A butterfly lights beside us, like a sunbeam...
and for a brief moment it's glory
and beauty belong to our world...
but then it flies on again, and although
we wish it could have stayed,
we are so thankful to have seen it at all.

Author Unknown



I am so sorry to hear of your loss.
www.tripletbutterflywings.com
www.tripletbutterflywings.blogspot.com

Harman said...

Your family is in my prayers!

Amy said...

Know that you are covered in prayer. I hope ya'll experience a peace in the coming days that passes anyone's understanding.

Kindly,
Amy (Jonah's aunt)

Anonymous said...

I pray with all of my heart and soul for God to bless and comfort you and your husband through every minute of every day!
My heart sings for a Leah who is whole and pain free! My heart mourns for a Leah who will be missed more than any words could ever say!
God Bless you both for the strength you both have! You will not be far from my thoughts and prayers!
<3<3<3

Linda said...

I watched your Silent Night video again with tears in my eyes. Schlaf in himmlischer Ruh, kleines M├Ądchen. Thank you for sharing your daughter's journey with us, Meghann. My heart goes out to you and your family as the new year dawns.

Fix said...

Jeff and Meghann,

We're so sorry to hear of this loss. What a short and difficult life Leah had! I'm very sad for your loss and we'll continue to be in prayer for you all as you grieve.

Fix (with Rachel and Rock)

Sarah said...

I've been reading your blog through Jonah's blog.My heart just aches for you. I'm sorry I don't have better words to say, but please know you are on my mind and in my thoughts today. I am so sorry.
~Sarah

Anonymous said...

Sweet Leah, I shed a tear for your parents today because I know they will miss you deeply. However, I know, and your parents know, that you are safe in the arms of Jesus today, completely free from EB. May God bring peace to your parents in the days to come.

Anonymous said...

I am so sorry for the loss of your beautiful daughter. May God give you strength, comfort, and peace in the days ahead.
Ashley in Phoenix

Baby be Blessed said...

Praying for you!
Much love~ Tina

Sarah P. said...

Like so many others, I linked from one blog to the next, until I found ours. I have followed for a couple of months now. Thank you for sharing your beautiful daughter with the world. I'll continue to pray for you.

Anonymous said...

Yes, Meghann, that's all we ever wanted too was for Leah to be pain free and happy. You were the best mommy God could have ever picked for Leah. You and Jeff showed such love and dedication through out this whole journey. We pray God would put His arms around you and Jeff and the whole family and comfort you as only He can. Leah now rests in his arms perfectly healed and pain free. That's how I will remember her. Love you, Aunt Penny

Sarah P. said...

meant to say... until I found *yours*.

Anonymous said...

Your daughter was beautiful.

I've lost 2 children, and there are no words to adequately express how sorry I am for you and your husband to have to experience this. Be very patient with yourself as you navigate this journey of grief. It's been 3 years for me, and it still stings.

I'm so, so sorry.

Lori said...

I've visited your site a few times now. I, too, have Junctional EB and I'm 53 years old. It just breaks my heart to hear of another person passing due to EB. EB takes far too many...far too soon. You and your family are in my prayers.
Rest, baby Leah...rest.

Anonymous said...

My heart just broke when I read the news. Although I don't know your family personaly, I have been reading your blog for a couple of weeks and have been praying that everything went well. I can only imagine the pain you are feeling and can't stop crying thinking about it. Please know that your family will be in my prayers and that your story and your sweet Leah has touched many lives.

~ Pati

Brooke said...

Heart broken.....praying for your family.
Love, Brooke

Amy O'Connor said...

There are no words to say how sorry I am for the loss of your angel. Prayers for you all.

Anonymous said...

We are so, so, sorry for your loss. We know that Leah is an angel up in heaven and at peace. Please know that our thoughts and prayers are with you and your family.

Sandy, Chris and the Hall family.

Abby said...

I found you through Jonah's blog and have been praying for Leah for the past couple of weeks. There aren't words to tell you how sorry I am for you and how unfair it is that you have to live through this. I will be praying for supernatural peace and comfort for you as well as rejoicing with you that Leah is now whole, healthy and pain-free in the arms of her Eternal Daddy- Jesus Christ.

Abby

libby @ ninesandquines said...

i came here from johah's blog a few days ago and just saw this. i am so very very sorry for your loss...that's all i can think to say....

Jessica mommy to Alex/ RTS said...

Thinking of you and your beautiful girl.

Marie said...

I had popped into your blog a couple of times over from Jonah's and was shocked to see the news on his site yesterday. I am glad she will never experience the true horror of EB, but how can I be glad such a sweet spirit is gone?

Leah, you will be missed. Have fun in heaven with my Lisa and Jonah's brother Gabe, and all your other little friends who left too soon!

Veronica said...

I am so very sorry for your loss. May God bless your precious family. You are all in my thoughts and prayers. :*(

Anonymous said...

I met Leah through Jonah's blog, and at the moment, I can't stop crying. I'm so, so, very sorry. I know she's in a better place, but I also know that her parents have very empty arms. Praying for you in Scotland...

Jennifer said...

I am so truly sorry for your loss. I will pray for strength for your family during the days ahead.

Rebecca said...

I am so terribly, terribly sorry for your lost.

Baby Bird said...

I am a friend of Patrice's and I just wanted to say that we are praying for you and as I read your most recent post my heart aches for you. I do know however that along with those sweet grandmother's and great grandmother's, the Heavenly Father must be taking a turn as well! May His peace and loving arms of comfort be yours now and in the days to come! He is with you...rest in His arms, sweet little lady Leah.
In His Great Love, Aimee Pence

Chelley said...

My heart aches for you...

Erin said...

I am so sorry for your loss, I cannot even begin to imagine all you have been through. You and your family are in my prayers

♥ Tamara ♥ said...

I still feel I am without words that can even remotely offer a soothing balm to your pain.

Your words you wrote today have drawn me to read them over and over as I sobbed each time I came and visited here today.

I'm not sure what drew me to always have Leah on my heart and mind since I came across your blog, (maybe my daughter being of the same age), but from a mommy who has buried a little boy in 2007, I can only offer the comfort of time that heals the incredible amount of pain. The wound will always be there, but her precious memories and moments that you shared together will be there to heal the raw wound.

Please let Leah's Nana know that I know her heart is grieving, too and may she find comfort in being there for you (her precious daughter).

We are praying for you all.
~Tamara & family

Maryellen said...

Praying for you. You shared your heart so beautifully. You are right Leah is shining bright in GLORY !

Heidi said...

My heart is broken for you and your family. I am so sad...

Mer said...

I've been following your daughter's journey since I read about her on Jonah's blog. I can't tell you how reading this breaks my heart. I am so incredibly sorry for the loss of your beautiful little girl. I hope you find some peace knowing she is no longer in pain and is in a better place. You are in my thoughts.

Anonymous said...

I don't even have the words. I just stopped by to check on Leah and my heart dropped. I am so very sorry for your loss. I have lost a child also, and I know that nothing I say will help. But please know that my prayers are with you. I will stop by the cemetary tomorrow and tell my Justin to take care of Little Leah. Again, I am so sorry.

natalie said...

I'm so, so sorry.

Anonymous said...

Just another friend of Jonah's who's been keeping up with your sweet little girl. You are in our prayers, SO much right now.

You never know what to say when this happens, but Pam's words just a few comments from the top, about what Leah must be seeing and experiencing right now, are beyond fitting, so I will just echo that sentiment - Leah is going to have so many people for you to meet when you are reunited... so many people that will be blessed by her because her mommy and daddy showed her what it's like to have a sweet spirit and love for God.

As a new mom, my heart is breaking for you right now... may God's peace surround you, may Christian family embrace you, and may the knowledge of the hundreds, perhaps thousands of people praying for you and lifting you up right now offer you some sense of comfort.

Jenni Halley said...

I came here from Jonah's website. I am so sorry for your loss. Your words today show just how selflessly you love Leah, letting her go to perfection, no matter how hard it is and will be for you. May she rest lovingly in the arms of the Lord

Anonymous said...

I am so very sorry for your loss of beautiful Leah. I was told by Baby Tripp's mom Courtney.My thoughts, prayers & love are with ya'll throughout this difficult time.Thanks for letting us get to know Leah. You are s0 very right "Leah has earned her Wings".

Debbie said...

My heart aches for you. Sorry just isn't enough.

just a girl said...

I am so sorry for your loss. Rest in the knowledge Leah is free and healthy, running, laughing, singing with Jesus. She is well, and she will continue to watch over you for the rest of your life. Her sweet life will continue to be an inspiration. Many prayers your way during this hard time.
Love Jessica. AB Canada

Rebecca said...

Been following Leah through Patrice and Jonah and wanted to come over to express my sympathy and let you know I am praying for your family.

Logan and Jack's Mommy said...

You are in my thoughts as is precious Leah.

Carrie said...

I am in tears. It's not fair. My thoughts and prayers are with you to send strength to make it throug the days. Words seem so inadequate.

Carrie said...

I am in tears. It is not fair. Leah will always have a place in my heart. Praying for you and your family.

Following HIM said...

Sending many prayers, love, and hugs you guys' way! No words can express my deepest sympathy for your family!
~Elyse

Anonymous said...

i am so very sorry to read a/b your loss. i have visited here from time to time through various other blogs, and i am so touched by all that your family has gone through. you strength in your post proves to me that there is a God, and as i read, i just kept thinking that He and Leah are holding you and your family up right now. i will pray for you all...

diane

Donna said...

I am so sorry for your loss, Leah was a beautiful baby.

Anonymous said...

I am so sorry for your loss. May the peace of Christ be with you and your family. Leah is in the arms of Jesus, and she is pain free, and you will see her again some day!

Becky said...

I'm so terribly sorry for your loss. I'm praying for God to give you the comfort that only He can provide. Wishing you peace. God bless you, sweet Leah!

KELLY said...

I have been keeping Leah in thought ever since they day my dear friend Shelby passed the word of prayer on. I could have lost my little boy and I just dont know what I would have done. You were her angels and who were strong and guided her to heaven. I envy the strenghth and courage you had deep inside to make your daughter's life as special as it was. Leah is an angel, a unforgetable gift from God who has taught me, myself, alot about life just from reading her battle. I feel as if she was my child, ever time I read her stories. When I look at my son I will think of Leah and what a special little person she was. God be with all of you and Leah, go play with your angels now...and let your soul shine...

Anita said...

My heart aches for you and Jeff. She will be missed by all who have grown to love her.
I feel she is smiling down on you from her high place in heaven knowing that she was loved more in her short sweet life than most people are loved in a lifetime!!
My thoughts and prayers are with you.

Diana Lopez said...

I'm so sorry for your loss. Just look at it this way, she is no longer in pain. she is happy home with Jesus waiting for you guys.

ryleeandnoahsmom said...

I have never visited your blog before today, but came over from the William's blog when I read about your sweet Leah. I cannot fathom your pain and loss, but I am praying that the Peace that passes all understanding will flood you. May your hearts be comforted knowing that others who never met you or your beautiful daughter are sharing your pain and lifting you up in prayer.
Jen

Tara said...

I am so sorry for your loss. Heaven has another angel.

Chele said...

I found your blog through Jonah's and have been following you and praying for you for the past few months. I just wanted to say that I am extremely sorry for your loss. Little Leah IS beautiful and HAS such a strong will and spirit. Words can't express the pain that you must be going through. Your family will continue and always will be, in our prayers and thoughts. May the love you have for family and faith continue to grow.

Much Love,
Michele

Jenn said...

I am so very sorry that Leah is not here with your family anymore. But rejoice that she is not EB free with her maker.

Your family will be in my prayers as I know the path following losing a child is a very hard one. May you always feel Leah with you and may you one day find peace.

Joy said...

I'm so very sorry for your loss.

Bethany Wiggins said...

I am so sorry. May you find peace.

Anonymous said...

I'm sorry she is gone. But praise God that she is with Him now. My prayers for you all as you adjust to life without her with you daily...I look forward to the day when I meet her in heaven. God Bless you.

Amie M

thorney said...

I am so sorry. My thoughts and prayers remain with you.
Love, Mari

Michele said...

No words...but I am praying for you.

chinamoon1420 said...

Patrice Williams told me about you. She is a wonderful woman. You are an incredible mom. I am so sorry you lost your beautiful Leah.

You and your family are in my prayers.

much love

Choofy Mama said...

I am so sorry for your loss. Our 2nd daughter was stillborn @ 41w and they think she had EB. I wish every day I could have held her alive just once, but I know God had a plan, and I can't be selfish and wish she suffered just so I could have held her alive.

I'm so so sorry, your girl was gorgeous. May the peace that passes all understanding comfort you in this time.

Nicole said...

wow. im shocked and so sorry. i just got so involved. she was so beautiful. I cant believe it. my prayers r with you...

Melissa said...

Just read the news on Patrice's blog. So very, very sorry for the loss of your little precious one. Our thoughts and prayers will be with you and your family.

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