Monday, September 13, 2010

Raw Guilt

I wrote this post a few nights ago after a meltdown. It is deeply personal and I've debated about actually sharing it. After thinking about it, I decided to post it. Here it goes. I have not edited it, nor have I really re-read it. I also want to make it clear that this is not about abortion- that was NEVER an option for us. This is about our choice between choosing the surgery for treatment or choosing compassionate care. A choice that no parent should EVER have to make.

Just a warning, this one is going to be raw and emotional for me. I need to get it out on "paper." I am being 100% vulnerable with you. I don't like what I'm writing, nor do I necessarily believe what I'm writing. But they are honest thoughts I've been having.

I am not by any means questioning our decisions as Josh's parents. Maybe by even having these thoughts, I am not trusting in God's plan for Joshua, or satan is trying to sneak in and attack where he knows I'm weakest. But these thoughts come and go and they haunt me. I can't dwell on them, I have to let them go. But they are there and they are real.

Did we make the right decision? Some of you may know where I'm going with this. It's hard to even admit that I have these thoughts.

Did we make the right decision? To fight for Joshua's life. To put him through the surgeries. Should we have just let him go?

I HATE asking that question in my mind. I hate thinking that through. I PROMISED myself that I would never look back and question our decision to save Joshua's life. We did it for him. Or did we? How selfish are we in keeping him here with us instead of letting him go? (why am I even thinking about this when he's doing so well and is already so full of life?!)

But here I am. Wondering. Questioning. Feeling guilty.

My sweet baby will be one month old in just 4 short days. Have you seen what he has endured?

How can I not feel guilty? The poor child has been through more in his 31 days of life here on this earth than I have in a lifetime. I've never even broken a bone.

And for what? Why? Would he be better off if we had let him receive healing in the arms of Jesus? He would have had an eternal life without pain, suffering, surgeries, and medical needs. He would have had a life dancing with the angels, worshiping a God who loves him, and a Savior who died for him. Yet we chose to keep him here.

I feel like I'm in dangerous waters even admitting that I have these thoughts. Please don't judge me.

We saved him. We chose to give him life and to fight with everything that we had to keep him with us. We have sacrificed: jobs, family, time, and financial stability for this little boy. We did it ALL because we love him. My world has been turned upside down by this little boy. My faith has been shaken and strengthened by him. His impact on lives has been incredible. The value of his life is indescribable to me. Would I do it all over again? Absolutely.

But was it out of selfishness that we saved him? Is it out of selfishness that we will continue to put him through at least 2 more surgeries and a lifetime of medications and doctor's visits?

God gave us an all consuming peace about our decision to save him. He sent His Holy Spirit to audibly tell us that "He would not take this from us, but it would be managable." He has kept His promise to us. We know that God has a purpose for Joshua's life. We know that his story will, and already has, impacted other's lives. We know that this little half of a heart has brought other's hearts closer to the God of the Universe.

So why this guilt? Where is this coming from? Why am I second guessing myself and our decisions? Am I losing faith that God is with us, and before us, and after us?

I am done with this guilt. We have 100% made the right decision to save him. I'm not looking back and second guessing myself any more.

God, take this guilt. It is Yours. You know the plan You have for Joshua. You know the life he will live. You know the reasons for his life. I am trusting You. I praise you and thank you for Joshua's life- for the impact that he's made on me, and for the impact he's made on other's lives. God, calm this heart of mine. Help me to give up these thoughts. Give me your peace and reassurance. All that I have and all that I am is Yours- Including this precious baby of mine.


Anonymous said...

You have been guided by God in your decisions, you should not feel guilty. Joshua has already proven that he is strong enough for this, strength that he has recieved through God and his parents. You and Shane are doing great!!!

Mike O.

Kristen Burtch said...

I'm not a mother yet, but seeing what you and sweet Joshua have gone through, it makes me wonder if I could handle such a hard process. But then I think about you and seeing how amazing your family is and realize I would have done the same thing as you & keep Joshua. But after all is said and done, I would question my decision also. It is only human nature, do not feel guilty! God's plan is still in action! Keep that chin up! You are an amazingly strong & inspirational woman!

Stacey said...


Thank you so much for sharing this with "us." I, too, have these same raw emotions at times and have never spoken of them publicly. Zoe, my HLHSer, is undergoing her stage 2 surgery tomorrow morning and I had this same thought, just this morning on our way to the hospital. I push it away just as quickly as it comes, but thank you for letting me know that I am not alone. I'm certain we are not alone and many heart moms feel this same guilt on occasion.

Heart hugs,

The Simmons Family said...

The emotions are totally raw during that first year. We all feel the same guilt. They get older and you get to KNOW them and they grow up. You know that you are giving them a chance to LIVE and to LEARN and to GROW! Owen is such a happy boy full of spunk at 2.5. As we approach the time of the Fontan/or Transplant... we know that it's in God's hands. We have been blessed with an amazing 2 1/2 years and wouldn't change a moment of time. He won't remember the surgeries. What I hope he does remember is the healing hands of Christ and that he was so very lucky to have such amazing doctors and caring nurses. That he has touched SO many lives. Our boys are here for a purpose. We may not understand why they are the ones that have to endure the physical pain, but they KNOW. I believe that in their hearts, they know they are special chosen ones sent down to teach US about life.

Josh is beautiful!!!

Owen's Mom (HLHS)

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

I totally understand where you're coming from. My baby was a renal/respiratory baby who was also premature, so it was a different situation, but I had the same feelings at times.

I heard this quote at the Riley NICU reunion and posted it on my blog. But I think it may help.

"Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it."
-Mother Teresa

Anonymous said...

Jill - I came across this quote as I was re-reading my journal from when my daughter had OHS. "Don't let what IF take away from what IS" I remember that it brought me intense peace and tranquility in knowing we, as her Earthly Parents, had made the right decision. We could have opted for "compassionate care" but instead chose open heart surgery to give her a chance at life. I truly do not believe it was an accident that McKenzie's 2nd word she spoke was "thank you"

Shannon Egan

Kathie said...

Don't let what IF take away from what IS.

Shannon, I really love that! It's how we live our lives the present, in the here and now, not being angry over what happened, not worrying about what is to come and living in a bubble because of it. It's the gift our daughter gave us - to live in the moment and appreciate it fully, because you may need those times to look back on sometime in the future.

Jill, I had those same questions. I remember asking my mom that question when Amelia was heading into her Fontan, when I was faced with turning over my bright, trusting, beautiful, innocent two-year-old to doctors once again. "Did we make the right decision?" I asked myself that when, at six months old, she screamed anytime anyone who looked remotely like a nurse came near her. I asked myself when we took her to the cardiologist and her sats were in the low 80s for her first two years.

I asked my husband if we were selfish, putting her through surgeries with painful recovery, knowing that more probably lie in the future and how long it will be is anyone's guess.

But now all I have to do is look at her running in the yard, telling my dad to "chase me!" And because he's grandpa, he obliges happily and loves it. I watch her run to her baby brother because he's about to topple over and wrap her arms around him so he won't get hurt, and he looks at her and laughs. I see her run to my husband when he comes back from a weekend away - "Daddy, I missed you!" as he scoops her up for a bear hug. She peers up at me over the side of the couch - "Mommy, I just love you so much". This is what our days are filled with now, and it is good, and it is meant to be. And all those days of surgery, healing, recovery, medication, feeds - I know they were worth it because she is happy and for the time being healthy. And she brings so much happiness to other people, and she teaches us that if a little baby can go through all that with such a tender spirit intact, we can overcome the obstacles we face as well.

Cheryl K. said...


Always believe that you made the right decision because you have. This is a new path for you and one that will have many 'adventures'. I would like to tell you that they do grow up (something I wanted someone to tell me at this newborn stage). You have a beautiful baby with you. You can do this and you can enjoy it! Take care.

nabrissa said...

Jill, here's the truth.... "YOU" did not save him... The Lord allowed for him to stay here... He heard your cries and saw that you were willing to let God's glory be known through him etc... (kinda like Anne did with Samuel (you can go read I Samuel) you and Shane have reminded me of that story in many ways regarding all that, 'cause truth be told sometimes i wondered if it would've been better for you to just let him be etc... but Here it is: everytime we prayed, we expressed our wish to the Lord but we ALWAYS, YOU always (USUALLY - in your sane moments) prayed that ultimately the Lord's will would be done... He could've taken little Joshua back, but he allowed for him to make it through very dangerous stuff...HE "SAVED" JOSHUA!!! He allowed for Joshua to stay amongst us... i love you! stop feeling guilty... again ... you had a desire. maybe a semi-selfish, only human, natural ones to spend some time with him etc... but the Lord is the one who decides ultimately and HE ALLOWED for him to live... ;0) I LOVE YOU!!!

The Hands said...

Letting the thought of giving your child up to death just doesn't seem right to a mother-especially a Christian mother. But as a heart mom who sat with her child through many months in the CICU on a ventilator, I can tell you that I did come to that decision in my heart. When my little girl's heart kept failing and failing (even after surgery), the doctors started to talk about transplant. I wasn't sure that I could handle all the circumstances that it would put our family through. It was then that I gave it ALL up to God. It wasn't that I hadn't done that before with my daughter, but that time I felt empty. It was then that God's peace flooded my heart. Now, God chose to give my little girl life (without a transplant) and she is an energetic post-Glen two and a half year old.

If I've learned anything from our life with a heart-child, it's that God cares about our emotions. The every day ones and the huge life altering ones. He wants us to go running to Him and beat on His chest and scream, "Why, why, why?" He doesn't always give us the answers, but our relationship with Him grows and our trust in our Daddy is strengthened. Remember David...he had many of those times. Job questioned God and then found himself lacking and recognized the awesomeness of God. (Job 42:2-6) All throughout the Bible there are stories of difficulties that are brought upon God's children. And in all of them God remained God and did not forget them.

So, don't forget that there is a big picture out there and God only knows it. Guilt is brought about by our humanness and by Satan putting doubts in our hearts about God's goodness and sovereignty. (Believe me, I've gone through the most of them.)

Lastly, I want to leave you with a quote out of a book that I've read this year.

From "A Symphony in the Dark" by Barbara Rainey and Rebecca Rainey Mutz.
(Rebecca lost her first child right after she was born due to multiple heart and brain defects. They express the feelings that many of us have felt from loss, but also have a beautiful way of explaining God's part in it all.)

"Humans are afraid of pain. No one likes to hurt. We avoid it, mask it, and run from it, refusing to get close to pain even when it is not our own...Fear can make us superstitious and irrational. But God does not act haphazardly. Good and beauty can be found in the experience of loss if we are willing to embrace it. But finding the good and beautiful is only possible when we believe that God is lovingly sovereign, that pain is not random, not without origin, not without purpose."

"We also believe that death is in fact a disease that infects all of humanity, yet we know with certainty that God never intended that we should die. Death feels so wrong to all who face it because it is so wrong. Intuitively we feel the discord, the incongruity that screams, 'This should not be!' that strongly suggests there is another way. This clash within is a call to our hearts to believe the gospel."

"Likewise, the Creator of all beauty knows that in His living works of art and song the most beautiful are those who have known the darkness of pain and loss... Truly the experience of death makes the experience of the gift of life all the more precious and beautiful. This, I believe, is the message of Romans 8:28: 'And we know that for those who love God all things work together for good, for those who are called according to his purpose.'"

And by Larry Crabb
"The suffering caused by shattered dreams must not be thought of as something to relieve if we can or endure if we must. It's an opportunity to be embraced, a chance to discover our desire for the highest blessing God wants to give us, an encounter with Himself!"

Jill, our children may still be alive, but you will continue to go through the grieving process as you grieve for unmet ideals and expectations that come with having a new baby/child.

Leah said...

Matthew 5:37 says "Simply let your yes be your yes, and your no be your no. Anything else is from the evil one." Satan will try to get to you any way he can, especially when you are tired, financially strapped, juggling children and health and everything else. Remind yourself daily of the confirmation God gave you concerning Joshua's life. Write reaffirming words and place them everywhere you frequent (dashboard of your car, bathroom, kitchen sink, etc) to keep yourself constantly in remembrance of the Truth. (Deut. 11:19) I say these things not to condemn you, but to lift you up as a fellow sister in Christ. The miracle has come, and is yet to come! That little baby has such BEAUTIFUL LIFE in his eyes; I tear up just to look at him!! I am glad to see so many people to encourage you on this journey. Something that I heard of or thought up along the way to consider: The devil can't read your thoughts but he can hear your words... I believe this to be true, so speak LIFE, and he won't be able to get a foothold. Blessings to you!!

Anonymous said...

The lord knew your choice even before you made it. He already knows joshua's life from beginning to end. Take comfort in the fact that he knows this. Your thoughts are those of a mother torn with the pain she sees her child in. No mother wants to see her child in pain. Joshua is living though and I know you are happy for it! :) Please sleep easy in knowing that your choices are the right ones or you would have made others. There is nothing to feel guilty about.

Christine said...

*hug* You are doing great! You are a fabulous mom and you are making the best decisions for your son. If you didn't stop to think and reassess every once in a while you wouldn't be as good a mom.. but you are right to let it go now. *hug*

Veronica said...

Jill, I think it is good to write your feelings out. Since it is truly is a matter of life and death, the heaviness of such decisions is really too much... we are called to give it ALL to HIM. God chooses life... be it life on earth or life in heaven. Trust in Him and give thanks to Him and enjoy each precious day you have with your son on earth. You are a beautiful mother, the chosen one for him.

Anonymous said...

I appreciate you sharing your raw emotions. I cannot add anything as the comments above so eloquently express what I feel. I will continue to pray for your family.


kirsten michelle said...

Jill, I love how honest and raw and real you are. I love that you ask these questions and put them out there. You are intimately acquainted with just how delicate and precious life is. What you've done is something most parents will never even have to come close to doing, and you've done it well. You've done it very well. You've fought hard. You've been an advocate for your family and for your sweet son, who many would see as "the least of these" (though I'm convinced within myself that these little ones will be our greatest teachers).

I've had some of the same thoughts/questions -- about fighting for Ewan's life, about what he will have to go through, of what we're asking him to endure. You and I both know how not easy it is (well, I'm about to learn how really not easy it is), but what keeps me going is this: Life is sacred, and it's worth fighting for. God may choose to take one of his precious ones home, and on a timeline that is far too early than most of us can bear. But we can do what we can here and now to fight for the life of that precious one, not knowing what plans God might have for him. It's up to us ALWAYS to choose life. Sometimes that choice is so, so dear -- so high -- as you know so well.

I can only imagine the testimony sweet Joshua will have -- the stories he'll be able to share, the impact he will have on the lives of those around him. He will be strong and courageous, just like his namesake.

I pray too that your burden of guilt will be lifted (James always says that "guilt's been damned to hell" -- I love that) and that you will be able to take your sweet son home soon. Not that you need me to say it, but you've done the right thing.

Blessings & hugs & lots of love,

Stefenie said...

As a parent to a heart child I can tell you we all have asked why is what we are doing fair to our children. However I feel that I have given Logan an incredible opportunity to be LOVED, loved and loved. To experience life and to enjoy the many blessings that God has given all of us.

There is no doubt that you made the right decision. Joshua is one lucky little guy to have such an amazing family that loves him as much as you do. If you didn't you wouldn't have written this blog post.

Molly Alisa Photography said...

Oh sweet Jill. I know you know you made the right decision. And yet I understand your thoughts. I can't imagine you not having them.

I cannot fathom watching my child suffer, or the trials you have seen him go through; yet God has been guiding, protecting, and comforting all involved.

I read what you wrote... and I cried for you... but as I read, in my mind I was seeing Joshua as a grown man praising God for how far He has brought him... and thanking you as a mother for the sacrifices you made along the way.

I believe Joshua has been born with a strong and courageous heart. I have thought many times about how much he must have learned through his experiences.

I know your doubts will fade as more time passes--as he leaves the hospital and begins his less painful adventures in life. And especially when he learns to speak and can tell you for himself how happy and thankful he is to be here.

Love you,

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