Tuesday, August 31, 2010

Harsh Realities

I've had the privilege during our HLHS journey to connect with so many other families who are dealing with HLHS. All are at different stages of their journey, some just finding out, some are through the first surgery and at home, some past the 3rd surgery, and others whose little fighters are now in the arms of Jesus.

As I meet new families, my heart aches. Especially for the families who are in the waiting period of pregnancy. The fear in their eyes is almost more than I can bare. Whenever I meet these new families, I want to do nothing more than provide them with hope that their child will do as well as Joshua has so far. I want to tell them that God has a plan, and that His plan is that their child will thrive. But the harsh reality is, is that sometimes God doesn't allow these kids to thrive or even survive. Quite honestly, I hate that.

We, so far, have been an anomaly. Joshua has done very well, and we have had very few and minor problems with his surgery and recovery. 

I don't want to say that God has "blessed" us, because there are families out there who have lost their sweet angels to HLHS. What about those babies? Why weren't they "blessed"?

I struggle with the thought that God has heard our prayers for a successful surgery. What about those babies whose family prayed just as hard? What about those babies who had no one praying for them? They were just as special- just as loved. So why ours and not theirs?

Please don't mistake me. I know that the prayers on Joshua's behalf has helped to give him strength, I know that they helped the doctors as they worked on rerouting Joshua's heart. I know our prayers have been heard because Shane and I have felt an inexplicable peace that can only come from God. However, I just don't know what to think about the thought that prayer is the only reason for Joshua's survival.

There are so many harsh realities that come with HLHS. Just because we did well for this surgery does not mean we will sail through the next. Just because there are no complications now, doesn't mean that Joshua won't have some major issues later down the line. Joshua is going to need lifelong cardiac care, and very possibly a heart transplant. Shane and I face the very real possibility of outliving Joshua whether that be now or years down the line.

I want to hear what role you guys think prayer plays in all of this. I am no theology professor and don't really have any idea what my thoughts are on the topic. I don't understand why some children do so well and why others don't. I'm rejoicing in the fact that our sweet baby has had a fairly easy road so far, but mourning with the families who have not. Please give me your perspectives as I try to muddle my way through this.


Anonymous said...

Jill -

All I can say is what I believe. God has already written Joshua's story. Just as He has the thousands of other heart babies that have come before Joshua and the thousands that will come after. As He has ALL of His children. No one has EVER said that this walk along the heart path is easy. It is NOT! There will be moments where you really question your faith. There will be the highest of highs and the lowest depths your soul can not even grasp until you are standing in the moment. I have cried, I have screamed, I have cursed and I have been down on my knees begging God to let me be the one to suffer - just leave my daughter alone. He has yet to answer my prayers in the way that I believe He should....he has answered them in His way and on His time. I have really struggled with that. I want God's Will for my daughter - but only if it coincides with MY will. I still struggle with that. And probably always will. There are days that I am at peace with our journey and there are days that I shake my fist at the sky and scream WHY? She is just a child - WHY? I always get the same answer....because she is MY child first and I have already written her story.

Be at peace.

Shannon Egan

Mina and Josh said...

Oh how I wish I knew the answer to this. Why God took Charlie away and left our family so heartbroken. Why Noah will have to live without his twin, his built in best friend. Working in medicine I know that every intervention has its risks. Some are luckier than others. Charlie got every minor risk that was possible. Stroke, bleeding, kidney failure, pneumothorax...in the end, God answered our prayer to bring our son peace and end his suffering. To do what we didn't have the strength to do. Why to tragedies happen? I don't know. But I can tell you that we appreciate Noah so much more. Colic wasn't a nightmare for me. Because I know the alternative.

I think God has answered our prayers for Joshua because he keeps hope alive. Not everyone can live with a literal broken heart, but Joshua so far has. Every second he lives is a miracle. My miracle just wasn't on earth as long as yours will be.

I didn't really answer your question did I? I just had to speak out. Joshua lives and thrives because people like me need to remember that we fought for a reason. That there IS hope and miracles DO happen. It wasn't all for nothing.

Anonymous said...

I believe God has a plan for all our heart babies. He has mapped out every person's life and it is all for His glory. I struggled with this very same thing recently (I even blogged about it in Jamie's carepage). I believe that prayer plays a HUGE role in our children's lives-it shows God that we trust Him with our babies' lives and His plan. Whether God decides to answer our prayers is a different story. God decided to use Joshua to soften people's hearts and help them to believe in miracles-because Joshua (and my Jamie) are truly miracles.
proud mom to Jamie Davis (PA/IVS)

Amy said...

I know it's not the same, but I think some of those same thoughts about my own life. I've lost five of my seven pregnancies, yet in the end, I'm being given the family I so desperately desired. The family that, at one time, I didn't think I'd ever have. But why me? I have many friends who can't get pregnant or stay pregnant... their hearts are torn into a million tiny pieces with every failed IVF, every time their cycle shows up, every time they have a miscarriage.... I know that feeling. I have no answer for why some prayers are answered one way while others are answered another. But I can tell you this: I do appreciate my son a LOT! And I appreciate this current pregnancy a LOT! I think we've all walked tough roads, it's just that your tough road is different than my tough road. But to God, no one person's pain is more or less significant than the next. God never said he wouldn't give us more than we can handle. He only said He'd never leave us nor foresake us, and that His power is made perfect in our weakness. It's just that we all have different circumstances of weakness. I guess that's the best I can do for an answer... It's not a good answer. But it's a REALLY good question though. *sigh*

The Real Life of a Red Head said...

All 3 of you are right. I know deep down that God has a plan for every baby no matter how short or long their life is. I feel guilty in rejoicing over our success when others have lost their babies. This heart world is not fair and it breaks my heart for others.

Maybe this is the beginning of a new calling on my life. I feel like something is brewing, I'm just not sure what at this point. There is a reason for all of this, I'm just unsure of what or why.

Heather - SCH board said...

Jill, I have often asked that same question. WHY would my prayers be answered over someone else's? Why when I prayed for my uncle to live, did he still die of cancer, yet when I pray for a coworker's daughter to live - she is still fighting? I don't have the answers and I am not sure if I want or need to know the answers but I do know that prayer makes me feel better - regardless of the outcome because of the peace that comes with it. Maybe that is the true purpose of prayer - the peace - not the answer. I don't know.

Stefenie said...

This was a great post Jill. I agree with everything in the above comments. Faith is a tough thing when you are being tested. You struggle with some guilt that your baby lived and others didn't. It seems unfair that you pray and pray and pray but the outcome is different than what you expected. I believe that God has our journey mapped out long before we even realize it. Some angels he calls home early to serve a purpose. Others he has stay with the ones he chose to fulfill another purpose.

You are right in saying that you feel something brewing. It is all part of what God has planned for you as well. He gave you Joshua for a reason....to open your heart...open your eyes...to help others.....and to teach.

HennHouse said...

What is there that I could possibly add?

I believe there are no anomalies with faith. There are divine interventions... the right doctors at the right times. The right mommy at the right time.

Will continue to pray.

Anonymous said...

When I read your post I thought of this scripture. I hope you don't mind my sharing. I have read it many times. I have thought on your questions in a differnt form but with heart ache as well. I have wondered why is my baby healthy and my friend has lost her baby. Why does any baby have to be sick of anything and others not wanted or abused? I do not understand such things either. I will agree with Jill that while I don't know the correct response to these questions, maybe I don't need to know either. I get a peace from praying that nothing else can calm. A positive reasurance that something greater than myself or the doctors or the nurses is in control. Anyway, here is the scripture that I am sure you have read before.

When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, oh God!" -Psalm 139:16-17

Praying that you find peace with your thoughts. Praying for all of you.


Mina and Josh said...

Something is brewing is right - God looked in me, when I blatantly said "I CAN'T HANDLE THIS", and showed me that I CAN. Every day is a struggle, every day I shed tears, but every day I fight to bring hope in others. I have a bumper sticker on my car from Little Hearts, as well as a car magnet that states "Hope for Heart Defects'. I also wear a lanyard at work that says the same thing. God lit a fire in me, and just because my story wasn't a success, and I question every day why...I NEED to share the hope with others. Charlie didn't die for nothing. He fought hard, and I know he is proud of me for what I am doing in his memory. Just like Joshua will grow to be proud of his mom for being strong, and for bringing awareness to others.

Paula Blackstone said...

I believe in our faith God asks us to just trust Him. And believe in His plan even when we don't know what it is or want to question it. None us know how much time we or others have here on this earth. None of us know what we will go through here on earth. I know God is with all of whether we realize it or admit it every second of our life. God is with you Jill and Joshua in Indy while He is also with Shane and the kids in Huntington. He is protecting and with your entire family even though you are not even in the same city 24/7. That is so amazing. And God's power and protection doesn't stop with your family which is way cool. He is the soldier from Huntington who was killed yesterday in Afghanistan and at the same time with his family here in Huntington waiting with them before they heard the news. I pray you don't think I am rambling. Maybe I am. I just want you and all that read this blog how great God is. We just never know where we will see Him, need Him, and feel Him.

Rhonda said...

Thanks Jill for sharing your story and being so humble and gracious. I appreciate all that you are sharing so that when my nephew is born in a few weeks we can try to understand what he is going through and what his parents are going through at each stage. I have added your family and all the heart babies that I have read about to my prayer list, I believe in the power of prayer and peace that it can bring. I also believe you can never have too many prayers, and your questions, sometimes I think we are just not meant to have answers, to strengthen our faith to let God's will be the light we follow. May God continue to bless Joshua and your entire family as you travel this road.

Anonymous said...

Jill - I've never been a deeply religious person, but I have prayed more in the past 14 weeks than ever in my life. I have always felt like God was watching over us and that there was a reason for everything that happended in life, whether we can see it now or not. I have prayed for our baby Jordan, our family and friends and now many complete strangers, including your son and your family. My heart is heavy and my eyes stay filled with tears a lot of the time, but each time I pray I feel like some of the weight is lifted. It makes us feel better knowing that there are so many wonderful unselfish people out there like you who take the time to pray for our child and our family when they have just as much or more to worry about than we do. So, even though there is no way to understand why some prayers are answered and others aren't, the hope that your prayers might be answered gives us something to hang on to.

Thanks for taking the time to email Wendy. Your support has helped her tremendously as we wait out the next five weeks. We look forward to watching our boys grow up together!! Rhonda

Anonymous said...

I have so "been there" on this one. I stood bedside with my 3 week old daughter hooked up to ECMO while the little girl next door was taken off of ECMO for brain bleeds. I was so thankful it wasn't us letting go and I felt so guilty for feeling this relief. How to pray? God may have a master plan but our prayers do serve a purpose. In prayer we have fellowship with Him, grow, stretch ourselves and empty our hearts so that He may fill us. The parents of the little girl are deeply religious and us well, not so much. Why them? Why not us? The mom of the girl several months later helped us when it came time to bring our daughter home and she said something that just about broke my heart. She said if it was God's plan to take her daughter home so she could be available to comfort and help us then she's ok with that. She's also the person that told me that God does give us more than we can handle so that we will lean more into Him. She is wise and I think on her words often. I have no answer that would satisfy our mother's hearts. It's not fair, any of it. Crystal in IL

Leah said...

Until Joshua I never knew the world of Heart Babies. And even now I only know as a friend of Joshua’s family. I relish ready all your posts (such beautiful families); I pray for each of your journeys. Prayer is what we have to cling to when we have done everything else within our power. I have little to add to what has already been said. Prayer is powerful, Prayer is reassuring, Prayer is answered in God’s time, not ours (nor is it answered to our will)…that is where faith grows. Not easy, most days not pretty, but always with God by our side, holding us up, carrying us when needed. Not a profound statement, but it is what helps to make the tough roads bearable. Hang in there and at the end of the day it is a comfort to know…God is still God…through it all.

Chris, Diana, Elena, and Sadie said...

Though our babies have very different problems, I know very well the "survivor's guilt" you are feeling. You want to be so happy for your baby but at the same time your heart breaks for those who do poorly, or don't survive. The NICU is a hard place to be, and things will come into perspective when you're home.

I know that prayer works. I was told that my daughter would not live, and if she did she'd be on dialysis. Today, her kidneys are functional, she's thriving, she's actually an overweight preemie! However, we don't always get what we ask for. Someone told me it's like looking at a tapestry. We can only see the underside, and to us it looks like a tangled up mess that makes no sense. But God can see it from the top in its completion. The tapestry of our lives makes perfect sense to Him, and yes, it takes dark threads to make a beautiful image. We know that Jesus was free of sin, but he was not free of suffering. Nor will we be free of suffering. But He's given us everything we need to handle it.

Take care-
Diana Heshelman

Anonymous said...

I truly appreciate your post of survivor's guilt. It is something we've struggled with as Ava is the only known survivor of pulmonary vein stenosis. I hate to say "God blessed us by saving her" because, while I feel truly blessed, I don't believe those children who go to heaven are any less blessed. My way of handling it is to view prayer as a process, not a means of getting what we want, and relying on the prayers of others for peace, guidance, wisdom, understanding and comfort. I will never truly understand until I reach heaven. In the meantime, I have to go on faith alone, even though i can't explain it. I will continue praying for you and for Joshua's healing.


Kristin & Benson said...

As a mother who lost her baby two months ago to HLHS.... I know its hard to understand why.

After I came back to work, someone came to me and said "I guess that was just God's plan for Luke."

Now, I am in ministry. I have been a youth minister for 4 years and I know don't say this to boast, but I feel that I have a pretty good understanding of scripture. I KNOW that the Lord I gave my heart to, that died upon the cross to save me... is not a God who CHOOSES or PLANS for babies to die. He did not create Luke to live for 12 days and leave his family heartbroken.

Jeremiah 29:11 tells us clearly... "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm to, plans to give you a hope and a future." If God "planned" for Luke to die... then the Bible is wrong.

Luke had HLHS... Joshua has HLHS.. not because God chose them to... but because we live in a dark disgusting world of sin and sickness.

Just as Job suffered, I have had to suffer. The Bible never says that the Lord CHOSE Job to suffer.. but rather, He allowed it. God has the power over sin and sickness and He can choose to intervene and bring healing. Sometimes He does, sometimes He doesn't.

Luke was not healed on earth because of lack of prayers. Luke did not die because the Lord was not faithful to us. My sweet baby experienced a heavenly healing because the Lord knew best. The Lord took HLHS --- what Satan intended for evil -- and used it for the good.

To this day, Luke's story has touched hundreds of thousands of lives. Do I miss him? Yes. Do I wish I had my baby instead of hundreds of people reading my blog? YES. But, the Lord has been faithful in answering our prayers. He has given us strength to continue this life without our son. Most importantly, He has promised us eternity with Luke.

The Lord cannot tell me why. When I get to Heaven and see him face to face, He still will not be able to tell me why.

Why? Because GOD did not cause Luke to have HLHS. He cannot tell me why Luke was sick - because it was not His choice.


Praying for you and for Joshua! The Lord is always good and He will give you and Joshua every ounce of strength you need, when you need it. Don't worry about why, just praise the Lord in every season and thank Him that no matter what tomorrow holds, you have a promise of an eternity with no surgeries, no doctors and no sickness.

Kim Overholser said...

All I know is that whenever I had or still do have a question like this about anything...I always seem to get lead back to this verse...now I keep it in my van on the sunvisor. The verse is
Proverbs 3:4-5..."Trust in the Lord wih all your heart and lean not on your own understandings, but in all ways acknowledge him and he will make your path straight." It is not up to us to understand the ways God wants us to go. We just need to be obedient to him and trust him. He will not harm us. Eveything we do we are grateful for and continue to be seeking the answers that are alive in us through him. I think he gives us things to learn new perspectives about how we can help each other more. I believe everyone will be reunited in the end and our time here is only temporary. I believe this life is for us to recognize Him for how awesome he is so we can praise him forever. God is good. God wants us to be good too. I hope I am and I hope I instill this in my children as well as make a good example for others to show all the good things that God does. I pray for families that are celebrating Jesus in their lives. I pray for families that need him but haven't accepted Him yet. i pray for families that are in grievance and don't know what to do or what questions to ask. I pray for peace and comfort from our Father so these families can soon find him and know their salvation, comfort, joy, sorrows, confusion and any other emotion or place in their life can be given to Him and He will take care of them. I know it's hard and don't get me wrong...I still feel these things but I have to remember this verse again and try not question...it is difficult but I trust Him b/c I know I can't control things.

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