I got up early this morning (5am) and went downstairs at the Ronald McDonald House. I went outside and just broke down. What a year life it has been. If you would have told me 8 years ago that I would have a child with autisim, a heart transplant and mitochondrial myopathy I wouldnt have believed you, top that with brain cancer at 32. What are the odds.
I had a very long conversation with God, through my tears. I so want Emma to live a full life. Everytime we come back to the hospital, I am so scared that she isn’t going to leave. I am so terrified that one time I wont be taking her back home. That is such a HUGE burden to live with. I have pounded my fists at God so many times, I have cried and screamed so many times to the point that I just dont have the energy anymore.
But then I remember my life verse:
“These things I have spoken to you, so that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world.” - John 16:33
I have to believe that He loves her more than I do. I have to believe that He has a plan and a purpose
for this. I have to believe that if/when He takes her home, He will take care of those who loved her so deeply here on earth. I pray for her healing on earth, but realize shortly after my prayers that she may not be healed this side of heaven, but she will be made whole on the other side of earth.
That is a tough pill to swallow for a mother.
I have to be strong for her, but inside I am scared to death.
I am not saying that this may be her last hospital visit, please don’t take this post that way. I think that we have had 2 very good years with limited illness and hospitalization. I truly believe that this is just a virus because her doctors are so confidently leaning that way, and I trust them. But it has brought back all of the fears and feelings I had at her birth and 2 years ago when she was diagnosed with coronary artery disease.
It reminds me how very precious the lives of my children are.
So, do me a favor. Go grab up your kids and tell them how much they mean to you. Tell them you love them and hug them till they can’t stand it.
As I sit in this hospital room next to my daughters bed I can honestly tell you that every second of life is so precious.
So very precious
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I cannot imagine what you are going through - I won’t even try to compare anything I have gone through because it just isn’t the same.
But this I DO know. Our God is big enough to let you have your anger and fears and He is big enough to take them so you can have peace. I have had many loud conversations with Him (okay so I was yelling) and always left knowing He loved me anyway and knew my pain.
You and your precious family are in my prayers.
Sarahs last blog post..Sleeping In
by SarahI’ve been thinking that so much lately. It’s so easy to take life, and our kids for granted. We’re never promised another breath. I do wish I would live life everyday that way. I’m so glad you take strength in our Creator, our Redeemer, our Overcomer.
Vickis last blog post..The Princesses Are Sexualizing My Daughter
by VickiDear Heather,
I really can’t imagine the burden your carrying. Really I can’t. I do believe (like you) that God does love our children more than we could ever imagine. It’s hard to believe because we love our kids with a love that is just so strong, you know? He will take of Emma, He will. I’m just so sorry that she’s going through this and that you and Mark are having to deal with it all. I’m still praying very hard for her (and you) to pull through. It’s ok to break down and sob to God, to let out frustrations and fears. He knows that, knows your heart already. He’s with you and your family and of course sweet Emma. Your life verse is right on the money…this world is full of pain and suffering we have to endure but Christ did overcome it all. Crushed it actually and now we have the promise of life with Him forever. He did endure suffering we cannot even begin to imagine, let alone death itself. Anyhow, God’s promises are there for us because He knew life would be hard. Keep praying and holding each other close. I’ll hug my 3 little girls like you suggested (: Know I will be praying, praying, praying! God bless you Heather and Emma Grace
Molly (:
by MollyStanding in faith and prayer with you, Heather. We can never understand the ways of God…..we are not suppose to. But we have to trust and stand firm and believe and love HIM. I have watched you do this consistently. Many others are watching and you are having a big impact for His kingdom here on earth with others.
Susan
Susan - Penless Writers last blog post..STICKY NOTE
by Susan - Penless WriterI was so sorry to read of this, another obstacle, on this road you are walking. I just want you to know that you have a family of 4 in a “little tiny one stop light town in Southern Indiana” that is praying with you, and believing with you, and hoping with all hope….with you.
by JohnaI hugged Twiddley Dee and Twiddley Duh (they are anything but dum) and told them they are loved beyond understanding; as are you, Mark, and Baby Baby. I will hug you all when I see you tomorrow.
I’ll call you soon.
I Love you
Dad
by DadI cannot imagine what you are going through and all you have been through since Emma was born. I know that God knows though and will not give you more than you can bear. He promises that! I also know it to be true, because even when we think we cannot handle any more, we are still here and somehow we make it through another day…no, not somehow, but because of God’s grace. Today, know that there are many praying for your family! Take comfort from knowing the body of Christ is upholding you, just like Aaron and Hur upheld Moses’ arms during the battle.
Gina Dunns last blog post..Graduation Ceremony..
by Gina DunnOh Heather - how I understand what you are saying. Hope. Hope in Him. It took me a while (and I still struggle sometimes) to “get” that to have hope did not mean to hope that everything would be okay - because, clearly, it’s not “okay” that any child has to go through any of this - or that you have to have cancer. But we have Hope in our everlasting LIFE with our father. HE is our hope. I am praying for you.
by MicheleBig prayers for you today Heather. Thank you so much for sharing your fears here from a mothers heart. All of us can relate to these fears and doubts to some degree and they can feel so hopeless in this life. But the One who holds your life and Emma’s life is the same yesterday, today, and forever. We can take rest in this fact.
I am praying that He replaces all fear and anxiety with His precious peace, the one that passes all human understanding and emotions.
Asking Him to continue keeping watch over every breath that Emma takes and heal this problem. Praying for all of your family Heather and trusting Him to give you sweet rest.
Love, Laurie in Ca.
by LaurelNo words of wisdom. No platitudes to make everything all right. Just praying, simply praying for you, for Emma, for Mark, for Easton, for Elijah, and for your extended family. May the Lord hold you in His righteous right hand today, dear Heather.
by pamMy prayers are with you and your family, Heather.
by SiobhanMay your Emma have the best birthday ever.
You are safe with Him, friend. Rest completely.
On my knees for your Emma–precious one!! I truly believe that she is Jesus’ favorite one. He will not leave, forsake, forget her. He is right there beside each of you. And He loves you.
So do I.
Holly Smiths last blog post..When Among Life’s Billows
by Holly SmithCrying out with you Heather. Thanks for that reminder, life is precious.
(((Hugs)))
Susans last blog post..Here Comes the Bride…again?
by SusanYour in my thoughts and prayers…
by Teresa from SCYou are all in my thoughts and prayers. I lift you up to God for his blessings and peace in your hearts. I love you all.
by SusanSusan
Sweet Heather,
Could not agree with you more…dear one, you and your precious daughter and family are being lifted up before His ever loving throne of grace and strength. Keep clinging to Him with every fiber of your being. Love and prayers!!
Karis last blog post..A new chapter…
by KariHeather,
by LindaI haven’t written in a long time, but I’ve been reading. I am not able to share all of the details in this sort of venue, but we have experienced the kind of live you are speaking about. The very least that has happened is that our son was diagnosed with M.S. this past Nov. That on top of some even more devastaing health problems that affect our entire family. So I echo the cry of your heart. I can pray with you with complete understanding. One moment it is total trust and indescribable peace; the next moment it is fear and despair and hopelessness.
I have to come back to that place of trust over and over again - because when it is our children is it so very difficult.
I am holding you in my prayers - all of you. It touches everyone when one so loved in so ill. Please email me if you would like someone to “talk” to. In any case, I am standing with you. We have a big God; we can ask big things.
Heather, I have never posted but I read your blog regularly. I am humbled and amazed at your courage. I can just imagine your mansion and rewards that God will bestow upon you in heaven for the example you and your family are here on earth. I had a miscarriage at 12 weeks 4 years ago and I got so angry with God. I couldn’t understand why he would take my baby from me. When I read about the heartaches you are going through, but yet you still praise God through all of it, it humbles me and makes me realize how far I have to go in my faith. Keep shining, precious jewel. You make your Father proud, I am sure.
by PMBI had tears in my eyes as I was reading your post.
Hugs and prayers.
Judys last blog post..Wordless Wednesday
by JudyMy mom sent me to your site. I cannot imagine what you are going through. I have no words. But I want you to know that your story touched me. You are so very strong and I admire that.
by Missythanks for the reminder: life is precious. a gift. praying we hear that message today.
monca brands last blog post..Convention
by monca brandThough I hate that you’re going through this ordeal, thank you for the most precious reminder to love while we can. Still praying for Emma and your family. God is still good, no matter the situations we face.
Shalees last blog post..WFMW – Putting Kids In Their Happy Place
by ShaleeYou have brought tears to my eyes. As we are dealing with a very little physical thing here in our house with out children I see the reality of how small it is. I want perfection for my children too, no physical issues, no problems. I see His strength through your weakness and it encourages me. I need to trust Him. Thank you for opening up like this, what an encouragement.
by JoAnnJoAnn
praying for you….
Amandas last blog post..Hello My Name is
by AmandaDear Heather,
I read your post through tears. You and your darling family are precious to God. My youngest son goes in and out of the hospital on a frequent basis. I thank God for every day he and the rest of us are on earth. Know that he has a plan that maybe we can’t understand. You are one of the strongest women I have had the pleasure to “meet” online. You have a strong testimony and God knows what is in your heart. Know that we are lifting your family up in prayer. We love you.
many hugs,
Barb
Barbs last blog post..It all started with a $5.00 bargain…
by BarbPraying for you today.
Morning Glorys last blog post..
by Morning GloryI am praying for Emma and your entire family. My family has been where you are and know just how hard it is. Please let me know if there is anything I can do for you.
by Kiesha[wiping away tears] Oh how right you are. I need to go hug my son now. Thank you for being an ever present reminder of our Father’s Love.
I so needed to read this today.
Love,
Katie
Katiebod (Roses are Red, Violets are…Violet)s last blog post..At Least Two Pics Made It…
by Katiebod (Roses are Red, Violets are...Violet)Dear Heather,
by BirgitI know these thoughts to the dot on the i.
Thanks for writing this. You made me realize that these things/worries won’t change after transplantation.
My daughter is 7 1/2 years old. She has a similar diagnosis (regarding the heart) your daughter had with her original heart.
The (first ?) transplantation is still ahead of us … We try to give her as many peaceful years on lasix and aldactone as possible. That’s her only meds.
You don’t have to be strong. The Lord is your strength.
Be sweet and weak, just as mother’s have to be - at least sometimes. And yes, hug her a lot.
Love, Birgit
Dear Sweet Heather,
I know it has to seem like just too much. Turn it over to Him, for He cares for you. We are lifting you all up in prayer and faith. Bless you all and your dear little Emma. (((((Hugs))))) and love ~
Cathys last blog post..More Thoughts
by CathyTears and prayers and a cyber-hug.
by Joyful DaysGod understands every word, tear, and emotion. Praying for both of you. ((hugs))
flipflops last blog post..Please pray
by flipflopOh, Heather, I found your site today searching for my sil newly diagnosed with GBM. Now I see you have so much more going on in your life. It makes me think of the verse, “In this world you’ll have tribulation; but take courage–I have overcome the world.”
Wrestle, Heather. God is always faithful to meet us where we grab onto Him. I will pray for you and your family.
In this time,
Deb
Debs last blog post..Web Browser for Autistic Children
by DebDear Heather,
Your posts always touch me and make me reflect on what God has allowed and also put into our lives. One day you’ll know how many lives your family has touched, and how many people have prayed for you all. You’re loved!
Hugs,
Heidi & Sarah
by Heidi H.(When you see Ilka Fernandez (nurse in CVICU), Kathy Arnold, Sharon Disano or some of the “old timers”, please give them a hug for us. Oh - and of course Dr. Korang too.
I do not “know” you but I love you as if I did and I am continuing to pray for you in these trials that you are facing. You are brave and strong and I know you will soon see the light at the end of the tunnel. Hang on tight to what you know.
by ConniHugging you and your family too ’til it hurts. And be reassured that God is hugging and holding you all tight too.
JanMary, N Irelands last blog post..Tiny Talk Tuesday, and the tale of two sofas
by JanMary, N IrelandI am so sorry to hear all of this is happening. Please know Emma and all of you are in my thoughts and prayers.
by Renee'I am amazed by you and inspired by you. You persevere, as should we all, through the obstacles of life that make NO SENSE. As a mother, I can only imagine your enormous burden. And yet, you constantly search the Word to find God’s promises to us. It inspires me to dig deep into the Bible and find the same truths to hold onto and call up when I am going through a difficult time. What an incredible inspiration to see faith lived out, even in the most difficult circumstances. Please do not misunderstand what I’m saying. In NO WAY am I expecting you to “keep it together” and have no doubts etc…through all this. It’s the fact that you do, and you share that and yet you call upon God and remind us all of the truths that He has promised us - even in the midst of it. I will continue to pray for you all, but please know your words are reaching SO MANY people and you have inspired me to live each day to the fullest and challenged me in my walk with God. THANK YOU.
by Jess in NebraskaHeather, I’ve been where you are - except I didn’t have cancer on top of it all.
I’m praying for God’s best for Emma and all of you, and I hope He miraculously heals her on this earth and that she returns home to celebrate her birthday - and many more after this.
I can also tell you from experience that if that isn’t God’s best for Emma, God is still good. All the time. He really is.
8 “For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the LORD.
9 “As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.
10 As the rain and the snow
come down from heaven,
and do not return to it
without watering the earth
and making it bud and flourish,
so that it yields seed for the sower and bread for the eater,
11 so is my word that goes out from my mouth:
It will not return to me empty,
but will accomplish what I desire
and achieve the purpose for which I sent it.
12 You will go out in joy
and be led forth in peace;
the mountains and hills
will burst into song before you,
and all the trees of the field
will clap their hands.
Isaiah 55.
ThoughtfulMoms last blog post..It’s Easter!
by ThoughtfulMomAmen Heather. Amen.
I heard Steven Curtis Chapman’s “Cinderella” this morning as I was driving my six-year-old to school. The meaning of that song has made a huge impact on my heart, ever since I first heard it on the pre-release last summer. And of course now, it’s rings all the more true.
Thank you for reminding us once again of God’s greatest gift.
Kelly @ Love Wells last blog post..I Should Be Ashamed. And In A Stupor.
by Kelly @ Love WellHeather,
by RobynIt’s okay to angry, and yes pour out to Jesus. When I got my dd’s HIV diagnosis and she was 2 mos pregnant with my grandson I totally freaked out. Every time she gets sick I get so scared and when its your baby you are up against the wall. But God has promised to carry you, he will carry Emma Grace he loves her so much, he loves you so much, he is your strength. When you’ve done all you can “STAND”, and tears are healing.
Sometimes we just have to put them (our children) totally in God’s hands, he knew them before they we’re in our womb, he created them….don’t give up , the fight isn’t over. There are a lott of people praying and God hears our prayers. We love you Heather and we will continue praying and believe for a miracle and a good report for both of you!!!
praying…
Amy (Dandelion Seeds)s last blog post..Ragamuffin Top Challenge: WEEK ONE
by Amy (Dandelion Seeds)Bless you and your courage to share all you’re learning on this journey.
Praying.
HennHouse (Karin)s last blog post..Overheard at the HennHouse
by HennHouse (Karin)ohhh Heather…I break with you in tears and heart and still praying and believing…you wouldn’t be human if you didn’t have those emotions….and anyone would break after such stress and
great purpose and plan!!! You allow us to see you as REAL 
you express without shame your humanness 
and then after all the feelings are done,
by Peggy@Mazes, Messes, & Miracles....hanging on year after year…but that’s when you know, your job as a mom is very important…and let God do HIS job, too.
That’s why He’s GOD, and we’re not and you’re absolutely correct that HE loves Emma even more than you do or Mark.
Emma has a
you rise up and declare your beliefs thru your life verse…you don’t have to be strong, allow Jesus to be your strength and you be “mom”…Heather…human…but cling to that FAITH that stirs up within you and DO NOT be defeated…we are rallying around you and calling upon the angels to be there and JESUS
to HEAL there…Emma, YOU, your hubby-Mark, your kids, your family…your anger, your doubts, and all those human frailities we all suffer along with you…we feel for you and Emma and
in case, you hadn’t heard the Chapmans, Angie & Todd Smith and now with their in-laws…Nichol & Greg Sponberg from SELAH loosing their precious “babies”…we can’t comprehend such heavy hearts and why…we stand in awe…and we cry out
with you…ABBA…Father, please hear our prayers, mend our weary and broken spirits and hearts and lives…BE our divine HEALER once more…save us…Give us a VICTORY that will bring You Glory and strengthen us in our weaknesses…Be GOD, in control…Spirit breathe afresh on us…revive our lives to touch
Emma with the healing balm of Gilead and Heather with your
restoring Grace to stand once more or better yet sit at Your feet
as you bring her Your peace and love and stroke her tiredness
with Your endurance to continue the good fight for her life and her daughter’s life…Bless them today with encouraging words like many of the above comments and a good word that Emma
can go home healthy for her birthday and live for many more…
we ask in Jesus name. Amen…be blessed (((you)))
Peggy@Mazes, Messes, & Miracles….s last blog post..TRIBUTE for TUESDAY
You are an inspiration! May God bless oyu!
Monica C.s last blog post..ABSOLUTELY AMAZING
by Monica C.Well, you have such a way with words. We have been praying for your family for at least a year now and I know that God is sovereign but there have been many nights when I go hug my kids in their beds because I’m crying and touched by something you or others have written. Our children - truly God’s miracles - are amazing.
May God bless you and bring Emma home safely.
Hugs,
Heidi
Butterfly Mamas last blog post..Some other updates
by Butterfly MamaThis evening our Bible study group prayed for both you and Emma.
HUGS!!!
Mary
Owlhavens last blog post..Book review: Just Who Will You Be?
by OwlhavenHeather;
I’ve been following your blog for several months now and just wanted you to know that I think you are an incredibly strong and beautiful woman. My heart goes out to you and your family and I hope and pray that both you and Emma are well soon.
Maureens last blog post..Wednesday, June 04, 2008
by MaureenAs I read your heart I hear the hymn ringing in my ears…
I surrender all, I surrender all, All yo thee my Blessed Savior …I surrender all.
When I first sang that as a believer it was so easy forme to surrender the mess I had made of my life to Jesus. As my children grew surrendering them to His care , His Love and His plan was not as easy. But as I was reading the Story of Hannah and her Seven Sons to my children one Chanukah, the Holy Spirit reminded me I was not only training my children to be able to die for Christ but I was also training them to train their children to be able to die for Christ if they have to do so. Now I have grandchildren and a granddaughter that wants to go to the aids orphans in Rwanda (have you seen Hotel Rwanda??) And just as I let my 16 year old daughter spend a summer in Israel ministering to Palestian Christians , we will let this soon to be 13 year old follow her passion as well.
Surrender is never easy and it never gets easier. It is just how it show be.
Because of Jesus, Bobbie
bobbies last blog post..Pray for Especially Heather
by bobbieFrom one mother to another, I ache for you. I am praying for His arms to hold you up and keep you strong. God bless!
by Carol HatcherPraying…rejoicing in your good news in a subsequent post, but praying today for you. Blessings, strength & courage~ Got to go snuggle with my little Grace. Thanks for the reminding me that every moment is precious. Thank you for your transparency. Out of your misery comes ministry. You never know who takes courage & faith from you just in the nick of time..those times when we find ourselves at the end of ourselves..a place that only God can find us.
Carmens last blog post..Dakota update - surgery delayed
by CarmenPrecious…yes it is. Hugs and prayers.
melodys last blog post..HP Photo Printer Giveaway
by melodyI wish I was there to give you a big hug. You have went through so much. I lost my husband 4 months ago and I am devastated, and my Dad was just diagnosed with cancer. He may not have long to live. Your site really encourages me. I will be praying for you and your little one..
Sending you much love, Nita Barrow- Zimmerman
nita from red tin hearts last blog post..(Part3) The Haunting of Ruby Shane
by nita from red tin heartI hope Emma had a sweet birthday. I am looking forward to see how everything went. Take care and remember, I pray each day for you all. :)
by ShariIf you only knew how I pray for you Heather, and your family. May the prayers and support of your friends strengthen you in some small way.
by Carol KidstonYour courage and down to earth attitude is something I admire just so much.
We are with you every step of the way.
Carol