Still Standing
June 27, 2006
Looking back on the past five years of my life as a wife, mother, and friend, I have come to realize that life as I knew it will never be the same. I wanted to share some of the things that have been heavy on my heart, and hope they minister to you.
When I first found out about Emma’s cardiomyopathy, I was devestated. This was a perfectly normal pregnancy up until that day, April 4, 2001. There were no major events, there were no signs or concerns. I went to the doctor that day in a rush, already having made plans for what the rest of my day would entail. I remember the exact moment it seemed that my world had fallen apart.
I think back on the events that unfolded, I think about the pain that completely took over my entire body, and the anger that I had no idea what to do with. I remember driving the 45 minutes to the children’s hospital to see the fetal cardiologist. I remember looking out the window and crying as I bargained with God on how “we could make this work.” I remember, out of no where, saying “I can handle anything, but I can’t handle a heart transplant. . .” Little did I know that that was exactly what the Lord had planned for our family.
Sitting in the Fetal Cardiologist’s office, the only words I heard were “death,” “no chance of survival,” “there’s nothing you can do,” “she’ll stop kicking in about two weeks.” I left there crying out loud, “Lord, just take her now, make her stop kicking and take her now, because I cannot do this.”
I became a Christian when I was ten years old in Amarillo, Texas. I have always gone to church, my father was a pastor, my husband was a pastor. . . but it wasn’t until this point in my life that I truly understood what a “relationship with Christ” meant.
There are many phases of the grieving process, and I found myself going thru them at the speed of light. When we came home for the Children’s Hospital that day, I shut down. If I wasn’t completely silent holding my pregnant stomach, I was crying uncontrollably. I didn’t eat, I didn’t sleep, I didn’t function.
I, silently, questioned everything about my faith. I asked those questions that are all too familiar with those of us that have faced a crisis. “Why is this happening to my family.” “What did I do to deserve this.” “Why is God putting us thru this.” My faith never waivered, but my relationship with Christ took on a completely new meaning. It was real, raw, and completely open. I shared my feelings in ways I had never thought possible. I experienced emotions I never knew were in existance. I became “Real” with my Father. I shared my anger, I shared my disappointment, and I shared my desperation. The bottom line was that I finally realized that this “thing” we call Christianity isn’t about what church you go to or what ministry you lead. A relationship with Christ is just that, a relationship. And any relationship can only thrive if it is bathed in honesty and openess. I have never been so open as I was during those most desperate times. I realized that, in fact, when I said “I can’t,” I was completely right. . . . I can’t. . . but God can. . .
So much happend so fast in those first four months. So many goodbyes were said to my little girl, so many things were done to her little body, so many emotions filled the hearts of everyone around us. We prayed for a miracle, we prayed for complete healing. . . but the Lord had other plans for us. I learned that “claiming healing” and understanding the complete and awesome power of Christ were two different things. I am still, to this day, learning that lesson. You see, I believe that the Lord is able to heal Emma, but I also realize that it may not be in His plan to do so. That was a hard realization for me to come to. Many events got me to that point. Many emotions, many tears.
At one point I had to break down, I had to show I wasn’t strong all the time, that I wasn’t this tower of unfailing faith. I was human, I was hurting, I was angry, and I needed to be able to share that. I think that one of the things that is so detrimental when someone is facing a catastrophic event is for those around them to tell them “how strong they are.” It is okay to not be strong. . . it is okay to break down, It is okay to be “real.” That is when healing can take place. It does not mean that your faith is any weaker. It does not mean that your prayers are any less powerful. It means that you can be completely open and honest about your devastation.
I remember when this point came for me. I remember standing in my living room and “having it out” with God. I remember telling him that I needed something to blame, I needed a place to put all this anger, I needed a place that I could come and break down. He showed me that place. . . it was in Him. I could be all these things in Him. He, after all, was my Father. He knew my heart even before I spoke the words. Why in the world would I think that just because I didn’t share my anger with Him, that he didn’t already know?
During the past five years, a lot has happend with my family. A lot of changes have come about. A lot of “compromises” have been made. The transition periods are never easy, but I have come to depend upon this “openess” with my Father to get me thru.
I believe the Lord can heal Emma, I pray fervently every day that He will, but I also realize that this may not be His will. I realize that despite my heart’s desire, death for all of us is inevidible. What I have learned thru this, though, is that time is precious. The lives that we (those of us who have faced these situations) touch along the way is where the “ministry” is. My daughter’s legacy will live on long after this disease takes her life. Her testimony of God’s Grace, even if he does not spare her life, is MIGHTY. He formed her, He breathed life into her, and He will carry her thru this. He will carry us all thru this.
I greatly appreciate your prayers for my daughter and my family. Please continue to keep them in your prayers. One thing that I do ask, though, is that when you are praying for healing for my daughter, you pray also for His perfect will to be completed in her, whatever that may be.
Pray for grace and understanding for her father and I. Pray that we will understand the path that He is leading us down. Pray that our hearts will continue to be “open” and that we will not feel the pressure to constantly be strong. . . for in our weakness, HE is strong.
Please pray that we will be open vessels. That our lives, and the life of our precious Emma Grace, will minister to every person we come into contact with.
I am going to leave you with a verse that a dear friend of mine has placed upon my heart for comfort. “Having Done All, STAND.” Knowing that we have done all that we can for our daughter, we are commanded to “Stand”. . . stand in the promises of the Lord.
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In other words: Play Nice
27 Responses to “Still Standing”
I have prayed for you and Emma and your entire family everyday over the past 4 years.
You (and your hubby) constantly amaze me with your strength and faith. Even being here by you through these past few years, I cannot imagine what it would be like to be in your shoes.
((hugs)) for you and Emma.
Laura, you are a dear friend and I am so very thankful that you were put in my life. We have been through so much together, and I am thankful for that! Youve been there from the very begining with Em, you have watched me hurt and watched her suffer, but you have also witnessed the miracles right along side of us, and there have been many! Thank you for being such a wonderful friend :) -H
Thank you, Heather for sharing your heart. Thank you for your openess. Your faith will continue to grow through this. God is almighty. But as you said, sometimes our will is not His will. Sometimes He says wait, no or yes. Having gone through some hurt on my own, I totally understand where you are coming from. Although you are much stronger than I was when i was hit with a loss.
Thank you for stopping by this morning.
eph2810, I love your blog!! Thanks for stopping by! I am so sorry to hear that you have had a loss. I try to remind myself, when I feel overwhelmed with pain and heartache due to our situation that there is Joy in the Mourning…. its okay to hurt, its okay to be angry… its okay to be real with God. Why would we think he would want us to be any other way? Again thanks for stopping by, and I oh so love your blog! -H
I will be praying for you and your family.
It is so hard to leave these thing in His will, when we just want to stop the hurt and make things “perfect.” It will be so amazing to stand in Heaven and finally see what perfect was.
Hey Janice! Yes it will be amazing to stand in heaven and finally see what perfect truly is… I think some of us will be really amazed! You are right, placing things in his hands is easier than leaving them there… that takes some serious faith! -H
Wow. Thanks for sharing your story - your struggles and your faith.
I appreciate people who are willing to be real. My prayers are with you.
Thanks Sarah! Being real hasnt always been my “forte”. Its been a progressive thing for me over the past 2 years. Its easier to hide behind all of the faces and masks that make you feel secure. I kinda like the open breezy’ness of being real myself! Thanks for stopping by! -H
I came back to read your blog this morning:) I love that verse you shared. Thanks. I am putting you and your dear family on my prayer list by the computer. You are a living example of how God takes us as we are pain, joys, struggles, and victories and uses it for His glory. We aren’t “Amazing Christains ” by our own strengh. Thanks for your great reminder. May God bless you greatly today precious sister and grant you a peace that exceeds all understanding.
Thank you Voni! I am glad you stopped back by and hope to see more of you in the future! The verse I shared is my “staple verse”. I cling to it on a daily basis. All we can do is stand in his promises and trust that he is our shelter and comforter. Easier said than done, sometimes! -H
Your strength is obvious, Heather, especially to those of us who’ve never faced anything like this. But I’m more impressed with your realization that you don’t always have to be strong because HE is.
It was a hard realization to come by! Im still “realizing it” everyday… I am sure it will be a life long process. Thank you for coming by Barb! -H
Thank you so much for your story for articulating it all….for walking a path and sharing what that has looked like…..for lighting that path by sharing REAL stuff and emotions….just THANK YOU….
I have an Emma and will pray just as you so humbly suggested……
You are very welcome, Thank you for reading it and praying for us! Emmas are the best, arent they! (Well, Eastons and Elijahs are equally as awesome in this house!) -H
Heather,
I am glad you posted. It was a beautiful expression to some deep feelings. I am so glad you are expressing it.
May I ask? Can Emma have a heart transplant? I am not aware of the heart problem she has. I know I read that the fetal Dr. said there was nothing they could do?? If that be the case she has lived a long time right? Please forgive the questions, but I would like to know more specifically how I can pray.
Thankyou for sharing your heart, I know this to is your testimony and will help others in there coping process.
I am sending hugs and many prayers your way.
I too love the name Emma. I will have a grandaughter one day named Emma Grace. lol not anytime soon… my daughter is just now dating a young man who is going to be a pastor, so we have a while.. Take care
Paulette, Emma has already received one heart transplant and is need of another one pretty soon (she has been worked up but not listed as of yet) She has a disease known as Mitochondrial Myopathy (www.umdf.org) Thank you for asking how to specifically pray. We are praying for more time with this heart, and that she will gain weight and maintain her strength for when the time comes for another transplant. I appreciate your questions, thanks for asking them! -H
Thank you for opening up and sharing your heart. One line in particular caught my attention, “What I have learned thru this, though, is that time is precious.”
What a valuable lesson to learn. It’s a lesson that we all need to be reminded of.
I will keep your daughter and your family in my prayers. I will pray also for His perfect will to be completed in her, whatever that may be. I will pray for grace and understanding for your family as well.
Thank you so much! Time is precious, no matter what the circumstances. Its very easy to get caught up in the things that dont matter, and to lose focus on where our priorities should be! Its been a tough lesson for me to learn, but I am thankful for it everyday. -H
Beautiful post. Love your blog - all my favorite colors in one convenient place. :-) Your post reminded me of what somebody told me one time: “God can handle your anger.” I’ll never forget that. Blessings to you and your family - I will keep you in my prayers!
BooMama, thanks for coming by! I read your blog daily! That statement says alot doesnt it… but for some reason we think we cant be real with Him, even in our anger. Its in our “realness” that our relationship with Him is restored! Thank you for comng by and thank you for your prayers! -H
Heather, what a beautiful post. I’m realizing that my favorite bloggers are the ones who are the most honest. Nobody makes it through this life without at least one major crisis (I’m hoping ours right now will be our only, but I doubt it), and honesty like yours helps. Thanks for sharing your heart–and you know that I’ll keep on praying for you and yours.
Sairah I have been following your blog and praying for you everyday. I pray that you will find peace and comfort but that most of all you will find hope… Our God is a God of hope! I am praying for you! -H
Heather- I am new to your blog, but I will be back. I, too, treasure the honesty of fellow sisters who are on this journey to glorify the Lord–haggard and worn we often are, but victorious we ultimately will be. Thanks for sharing your story!
Jennifer, I am glad you came by! I completely agree with your comment, those haggard and worn moments are the moments that cause growth in ways we never dreamed possible! -H
Amen sister! I will “stand” with you. I will pray for Emma and your family.
(((hugs)))
Paula, I never doubted that you would! I hope you are feeling better today, and your new blog design is wondermous! -H
Wow, Heather! What an amazing post. I really resonated with a lot of what you had to say, especially about the faith, and claiming healing and so on. Thank you so much for sharing.
And I will surely pray in agreement with you for your Emma Grace.
Hugs.
I know that miracles are still happening everyday. The Lord has healed my son Noah and there is no other explanation. He can also heal a mother’s heart.
He who has begun a good work in Emma will be faithful to complete it. Philippians 1:6.
Today I was trying to catch up with all the blogs in my blogroll and you’re on the Captivating list, so I found my way here. This was such a touching post and it made me think about my relationship with God. I, too, have yelled at him over something that, reading your situation, was less critical and it was my husband who told me that God was big enough to handle my anger. Since then I’ve tried to tell him how I feel about things, but I think your post reminded me there’s more I can do. Thank you.
Heather this is such an honest and raw entry and reminded me so much of where I was eight years ago. I lost a 4 year old son to Tetralogy of Fallot, a congenital heart disease. I know the struggle and it can be very difficult on certain days. Just continue to trust in the Lord. There is a line from a song “If you cannot see His hand, trust His heart.” and I know that you and your whole family are doing just that. I will include you all in my prayer list. My blog is Midlife Mysteries. No matter the nationality, I realize there are so many commonalities. Above all, we are all sisters in Christ. God bless you!
Heather, I came here by Janice’s blog. I love the encouraging words you’ve written in your posts here and am looking forward to coming back in the future. You will be a blessing to many with your faith and your story. Hope you had a good 4th!
I come by your blog via a friend. Thank you for sharing your life and being so open and real. I know that through our weakness He will make us strong. We will be praying for you and your family. A young man (17 yrs)from my church just passed away the other day. He had a seizure and passed out. His family and the whole church needs alot of prayer. He was a sweet young man that helped out often with childcare/nursery. So alot of the kids in the church need prayer too.
I really appreiate your ’staple’ verse. Having done all…STAND. My family and I have had our share of trials. It is a very encouaging word from the Lord.
Thank you.
Heather - What a touching post about your relationship with Christ. A crisis such as yours can break a lot of people, but for you, you have allowed it to bring your relationship with HIm to a whole new level. It’s a process, one that never ends, unless we decide to end it because Christ certainly won’t. As a mom with a child who has an unpredictable chronic illness, I can SO relate to all of your thoughts and feelings. As Paula said, I’ll “stand” with you, too - and, as always, will keep you and yours in my prayers.
I would love to learn more about your little Emma.
My son, Jake, was one of those “cardiac kids” who wasn’t supposed to make it. He’s 21 now. I understand some of what you have gone through, having been there myself. Know that I have prayed for you and your family and especially little Emma.
May God continue to pour out His blessings upon your family and hold you in His Mighty Hand.
Your faith is evident in your writings. Thanks for sharing your light with others.
I am reading around the EM writing contest entries. Thanks for sharing so honestly. It’s hard when we can’t see what the future holds, but your example of holding on in faith is wonderful.
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