As my husband reached over to switch off the ICU machine that was beeping for the hundredth time in an hour, the nurse comments to herself: “ICU parents”. It struck me at that moment, that certainly my husband and I have had a very unique experience this year, literally spending months in Intensive Care Units across two different hospitals. It is something that forever changes you and certainly teaches many lessons.
It was last year this time I stepped into a neonatal ICU for babies for the first time. I had been in adult ICUs before then, just to visit family or friends. Since March last year (2017), we have spent more than 3 months in ICU. Between myself and my baby we have had 4 major surgeries in 6 months. I had to have an emergency ceasar birth at 34 weeks after a prolapsed spine disk. Four days later I had a major back operation. Our baby, Gabriella, even at just 2.4 kg had to have cardiothoracic surgery to manage her severe congenital heart condition. At 6 months she had her second open heart surgery and a few relapses after that before she finally recovered. (See my husband’s post for more details: Andrew Graaff — Gabriella, God is my strength.)
I hope these 5 short lessons act as lights to guide you through stormy seasons of life.
Lesson #1: There’s purpose in pain
Ever thought what life would be like if we didn’t have pain killers. That thought ran through my mind as I lay in ICU with my morphine releasing gadget they gave me after my cesarean before my back operation. Even lying down and stationary I had pain with the morphine. But I could instantly feel when it was running low and was so grateful for my morphine gadget which allowed me to manage my pain relief. And I was grateful for my drips, where the nurses could top me up even further. At one stage I counted: I had 6 pipes running from my body. I was flat on my back, bed ridden and not able to sit up. But any movement still brought on pain. Often I just lay there in pain with the tears streaming down. I just needed to be still. Work with my pain, understand it. Pains purpose for me in that situation was to prevent me from doing any further/permanent damage. I have lost feeling in some parts of my legs, I had to learn to walk again. But had I not remained flat and still at that time, I may not be walking today. We ignore pain at our peril. The sooner we address it and deal with it, the less the permanent the damage.
Lesson #2: Life’s mysteries unlock new possibilities
As I lay flat on my back in ICU, I stare frowning at my 4 medical doctor specialists standing at the foot of my bed. They’re doing their morning rounds and coincidentally this morning they’re all here at the same time, talking with each other about me. It’s the morning after my cesarean (baby’s birth), and they can’t quite figure out what the best treatment for me is going forward: gynecologist, neurologist, physician, neurosurgeon. Tears start rolling down my face again. The sense of lack of control over everything in my life is just overwhelming. And it seems my doctors don’t know either.
It’s one of the most unsettling realisations when you or a loved one is sick and suddenly the doctors don’t know how to fix you. For six weeks being pregnant, I could keep no food down, only water and some ‘mush’. I searched wide and deep for answers but with all the medical advances, no one had a cure for extreme nausea with pregnancy (hyperemises gravidarum).
I don’t know how Gabriella and I survived with almost no food for 8 weeks. I don’t know how I breast fed being bed ridden for 6 weeks after my back surgery. Mysteriously my baby and I are thriving having endured that and so much more.
So many mysteries of life exist yet also the possibilities that goes with that! The unknown and mysteries still abound everywhere. We have a choice to crippled under the lack of control it presents us with, or we can accept the challenge of unwrapping the new possibilities it presents.
Lesson #3: Adversity unlocks new inner strength
I feel like I can take on the world because of what our family has come through. I’m so excited that we did not break. Listen, it was close! With baby’s last visit, my husband, even my baby’s doctors were sending me for psychiatric treatment. I sat opposite the Psychologist, so angry I was there, and asked him a few questions. Is there anything abnormal about what I am feeling given what I am going through? If you had a baby in ICU for weeks on end, who’s fighting for her little life? A mommy who for months could not have her baby with her and could only see her for a few hours a day? How would you feel? His answer: “You’re right, there’s nothing abnormal. In fact its miraculous that you and your husband are still standing without medication.”
I experienced deep levels of anger, deep levels of fear, extreme fatigue. But you know what. Somewhere inside of me something rose up I did not know I had. A new deeper, greater inner strength was released. An answered prayer and a gift from the Holy Spirit of God. Like from the ashes of my reality a Phoenix rose up. To sit my husband down and say – I am struggling, but I am okay. To say to my boss — I cannot work now or I will break. To say to my friends — I miss my baby so much I cant breath, so I need space to be sad and don’t try to fix it because you can’t. A strength to manage the people around me so I could manage myself.
Without months of adversity I would never have gotten to that point. It’s a powerful freedom, one I thank God for the most.
Lesson #4: Transitioning from a sprinter to a marathon runner
I was a top sprinter in school. I could never do long distance running though. Certainly I was built for speed and not long distance. However these last two years has meant I needed to make the transition from a short distance sprinter to a long distance marathon runner.
A sprinter needs minutes of strength and bursts of extreme energy. Everything is sore for a few seconds once it’s done and then you’re fully recovered very swiftly. A marathon runner by contrast needs hours of endurance and long term energy. It’s about persevering through pain and once you’re done, you may need days to recover. As a sprinter you need a quick warm up on the day and you’re good to go. As a marathon runner you need to prepare for months to be able to endure kilometers.
I remember walking out the ICU on day 14 of visiting baby in ICU. The emotional intensity of seeing my baby in pain overwhelming, the heart ache of still not being able to take her home. Having to rush back to work knowing she is fighting for her life. As the ICU doors flung shut behind us, I wanted to collapse in a heap. Drop to the floor, crawl in a corner, weep and sleep. But I knew I just had to keep going. I just needed to get to my car. Then I just needed to drive. Like a marathon runner, just targets one step at a time, breaking the long run into small milestones.
When you’re in a long time of trial and trauma — it becomes about the basics of life. Sleeping. Eating. Washing. Survival. Conserving all energy today, knowing there’s a long stretch ahead before you come to the end of the journey.
Lesson #5: Trust your instinct and test everything
In crisis, we tend to just follow and listen to those “in authority over us”. Especially doctors. But no one has spent more time with your body and your loved ones bodies than you. And you have an inner voice, the voice of God, who guides you. Having spent so much time in ICU repeatedly, I’ve seen how Doctors have bad days too and make mistakes. Each has line of expertise where they stop. They have a glimpse of the piece of the puzzle. But you are the puzzle maker. You have to keep engaged to bring yourself and your family through to the other side.
We were not the most popular parents because we questioned everything. Maybe that was extreme. But many of our questions, we believe resulted in either a faster recovery, less discomfort or ultimately her healing. Why does she need another drip, there are 3 in her already. This is the third blood vessels that’s collapsed from the drip, please ask the Dr why she can’t receive the medication orally.
Gabriella’s pediatric cardio surgeon is incredible. But he didn’t recommend stem cells, he doesn’t even seem to believe in its possibilities for the future. But we do. Our instinct tells us that we will not accept that for the rest of her life she lives with a broken heart and before she’s 30 may need a heart transplant. There are greater possibilities. That piece of the puzzle may not exist yet, but it’s up to us to ensure that we keep looking till we find it.
There are times when we need to speak for those who can’t, follow our God-given instincts and wisely test every bit of advice. You and your loved ones live with the consequences, long after a service provider has received their payment.
In conclusion, 2017 was a traumatic year and I intend to write more about it in 2018. As this year kicks off, I’m filled with hope and a greater courageousness. I believe this is because of the lessons learned in ICU and I hope it will be an encouragement for many others too. These have powerful applications in our personal lives, our work lives and for our nations. Especially when times of trouble hit.
I hope these lessons encourage and strengthen you and your loved ones through times of trouble. From our families heart to yours. With deep felt gratitude to my mother, our families, friends and our Father in heaven who covered us with grace.