Life after Transplant

Guilt

Guilt.  A feeling of having committed wrong or failed in an obligation (oxford ENG dictionary).

Why would a parent of a sick child feel guilty? Having a sick child is no one’s fault – it just happens. When Laura was diagnosed with Transposition of the Great Arteries, we were told that nothing we could have done throughout the pregnancy would have changed this outcome. Laura’s heart was fully developed by 8 weeks gestation and began forming at 4 weeks gestation – I didn’t even know I was pregnant at 4 weeks. This was no one’s fault. We didn’t create Laura’s illness, neither did the doctors, our parents or even God. God was not punishing us by giving us a baby with a serious heart condition – it was just the luck of the draw.

Still though, in the quiet moments this sinking feeling would enter my thoughts. Maybe I should have taken more folic acid or eaten better or treated myself better. Then, when I would use logic to tell myself I was crazy, new thoughts entered: how had I not known that something was wrong with my baby? Was my morning sickness a symptom? Should I have pushed harder to have the ultrasound techs look more closely at the baby’s heart?

The answer to all of this, of course, is no. And also – what difference would it make? If I had known about Laura’s heart defect prenatally, I would have been worried throughout my pregnancy which would actually have put more strain on her little body. I would have done mounds of research that would have concluded that Laura would be fine after her first surgery and that the rest of her life would be normal – devoid of any heart problems. Would that have been comforting when Laura went into cardiac arrest and the thought of a normal life slipped away? I think not.

In the hospital you feel guilty all the time. Guilty when you’re there because you should be sleeping, or doing paperwork, or paying bills, or even taking the time to update friends and family. When you’re not at the hospital, you feel terribly guilty that you are not there with your child. You start to think that maybe you could make sleeping in an office chair in the ICU work which of course you couldn’t for any more than one or two nights. You hear stories of parents who spent 23 hours a day with their child and you feel so terribly guilty because last night you had to leave at 6pm to try to eat a relatively healthy, home-cooked meal before you came down with scurvy. That’s when you realized that the parent that stayed 23 hours a day had their child admitted for 4 days – not 5.5 months.

The biggest sense of guilt came, though, after we returned home.

Every moment that I felt I needed a break or that I just didn’t feel like playing with Laura ripped out a piece of my heart. She nearly died. She could be dead. I should have been cherishing every single moment of every day.

Yes, we had to wake up every 2 hours to give Laura meds or to feed her but we should have done it with a big fat smile on our faces – because Laura could be dead.

Laura pooped and it got everywhere and she was screaming because her ativan was weaning off and she missed it – but we should  have been glad because she could be dead. 

Laura decided that sleep was for the weak but we must always keep a smile on our faces and a dance in our hearts – because she could be dead. 

A.J returned to work and I was left with a 7 month old while trying to pump every 4 hours and get her caught up in physical therapy, occupational therapy, and feeding but it’s fine, because she could be dead. 

I am so completely in love and overjoyed 95% of the time because it’s true – she could be dead. Laura is amazing – she is well behaved, she’s ridiculously cute and she sleeps well (and eats really well now). But every once in a while, I need a break. It took me a few months to figure it out but now I know the truth:

It is okay to want a break.

It is okay to be an hour late feeding the baby.

It is okay to forget to talk to my friends and family if Laura is unwell.

It is okay to be excited about Monday nights because that’s A.J’s turn to watch Laura while I go to band.

It is okay to put Laura in her crib with some toys so that I can have a shower.

It is okay to forget that Laura died 3 times.

It is okay to have moments that I do not cherish.

It is okay to let the house get a little messy from time to time.

It is okay to have days where I don’t want to talk about Laura’s time in hospital.

It is okay to be upset that Laura had to go through so much.

It is okay to feel joy when remembering our time in hospital.

It is okay to be thankful that God trusted us with such a special little girl.

It is okay to be thankful that we got the opportunity to go through what we did last year.

I have learned that guilt is okay. It is okay to feel guilty and to feel afraid but it is NOT okay to let it become your truth. It is not okay to allow yourself to place blame. It is not okay to blame yourself or others for the bad things that have happened to you. It is not okay to blame God for what you have endured. When life gets messy, it’s okay to take some time to adjust but the biggest, most important lesson that I have learned over these past months is that

I am enough.

All of me. Even when I want to pretend that Laura is still asleep so I can finish my episode of Grey’s anatomy…

2 thoughts on “Guilt”

  1. Sarah, Thank you for sharing your story on your blog. It is as though reading it helped me to understand the “transplanted guilt”. My daughter had surgery at birth (Tracheoesophageal fistula), then another surgery at 2 years old; then drowned and survived at the age of 14 years old. She is 20 now and I am extremely grateful; however, the guilt which weighs me down can come back every once in a while. And the feelings are the same… as though I can never do enough; as though I must always be perfect and not allow myself to hurt her feelings in any way; because she almost died and she went through so much in her life. That I owe her a perfect mother. It was very hard to disappoint her in any way; her pain/sadness/ disappointment become something that I felt guilty for when she was young. I learned to let her have those feelings without interfering with my guilt. And it got better. However, every so often the ‘transplanted guilt’ rears its heavy weight on me. I know it like my left hand. Reading your blog reminded me of what it is and what it is not. Coping with the guilt requires nurturing me today. She is a beautiful young woman with her vibrant life. The richness of my relationship with her includes these difficult feelings; and it is okay. Nurturing her to health was a journey of fun, sacrifice, joy, pride, and sometimes involved un-nurturing me. I had to set aside my needs and my feelings sometimes. Maybe that is why the guilt is heavy. it is the guilt of not being good enough for her AND not being good enough for me at the same time. I did my very best and i am grateful. Your words inspired me to remember what it was like. Good luck with your lovely daughter.
    Thank you,
    Nina

  2. Thank you for the lovely words, Nina. I think that parents in general learn a whole new level of guilt and expectations but the medical community has such a larger job still. There is always a sense of urgency that every moment must be picture perfect but of course it doesn’t – we owe our children a relatively “normal”
    Childhood with all that that means. I’m so glad to hear your daughter is doing well and has grown into a woman in her own right!
    All the best,
    Sarah

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