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…