Whether it’s a high fever, unusual behavior, a bump or fall, or a more serious prognosis — loss moms often struggle with anxiety when their rainbow baby is sick. I certainly was no exception…
When my phone rang as I headed down to our car from the pediatrician’s office, my heart sunk. It was the neurology clinic, ready to schedule our rainbow baby’s EEG — the same test our pediatrician told us we’d need just minutes before. “They wouldn’t be moving this quickly,” I thought, “if it weren’t serious.”
And serious health concerns were the last thing I wanted to face. It was a cruel irony — after struggling for five years through recurrent loss, and going on to deliver a healthy rainbow, I still stood to potentially lose this child I had fought so hard for. A deep fear settled in for the long-haul.
I was no stranger to fear. Fear’s roots had nestled deeply into every crevice of my heart since the moment my pregnancy test turned positive, reminding me daily of the obliteration I would feel if something were to happen to this last baby of mine.
But I was a complete stranger to the fear that overtook me when it came to my rainbow baby’s health.
I knew all too well that babies are not immune to scary health issues. And yet my tenuous hope that at least after all the losses, a rainbow baby should be protected by God, or karma, or the universe, slowly disintegrated before my tear-stained eyes.
Before this appointment, I spent the many hours nursing her each day drinking in her every detail — like the one eyelash on her left eye that grew adorably longer than any of her other lashes, or the way her ears have these tiny notches in the tops of them, or the way her middle toe peeks from beyond her big toe like two runners crossing a finish line and one breaks through the finish line just before the other. And after that appointment, I spent compulsively Googling her symptoms on my smartphone as she nestled at my breast. This was supposed to be a time of sunshine and rainbows. Not time for another storm.
Words I never wanted to hear alongside my child’s name became almost commonplace. I lived from doctor’s appointment to ER visit to testing to a hospital stay, while fear became my constant companion. I struggled to enjoy the present — always wanting to rush time along so I could just get answers, or go backward in time before any of this began.
After talking with other moms who are parenting after loss, I know I am not alone in these feelings.
It doesn’t matter if our child’s illness is routine or serious. Moms after loss face 6 absolute needs when their rainbow baby is sick:
1. We need people to affirm and acknowledge our concerns.
Some well-meaning people sought to assure me by downplaying my concerns. But instead of making me feel better, I felt worse. I felt unheard. So I relied on the friends who heard my concerns and said, “Yes, I see what you are dealing with, and even though I hope things will be fine, you need to know what you are feeling about the situation is perfectly valid.”
2. We need to feel free to tell doctors about our fears.
I wanted them to understand the years of losses leading up this child so they could understand why I respond the way I do when things look like they are going wrong again. But fear has always kept my mouth shut. I was afraid if I admitted to having the A-word, they would only see every symptom I brought before them as a figment of my overactive, dark imagination. My need to be taken seriously by doctors beat out the very real need to be understood. Sadly this need is one we loss moms often don’t have met.
3. We need friends who have been there to speak up.
I’m forever indebted to my friends whose children had undergone cancer testing to give me tips on how to do a 24-hour urine collection on an 8-month-old or what I should pack in our bags for our hospital stay. I needed them to confess to me their fears they faced and how they managed them on a day-to-day basis. The people who had gone before me became the people I relied on most for emotional and practical support.
4. We need reassurance.
I’m not talking about an, “I’m sure all will be fine.” I mean, legit reassurance. I needed an Owlet to monitor her breathing and heart rate at night and was forever grateful to our friends who bought one for us. I needed the right tests to be administered by proactive doctors who would not rest until they understood what was going on. I needed to hear that our baby would be fine from a licensed professional, not from a loved one who hoped that would be the case.
5. We need permission to fall apart.
I had put on my brave face for so long. Through each loss, through trying again and again and again. I didn’t feel brave in my rainbow pregnancy, but I tried to be anyway. Tried to brave my way through a delivery that scared the crap out of me. Really, I spent five years trying not to just completely fall apart at the seams. But I needed to have permission to not be brave. I needed to fall apart — at least some of the time. I needed to be honest about how deeply out of control I was, and how much that scared me.
6. We need acceptance that our world has shrunk for a time.
For a season, I could not think deeply of anything else but my daughter’s health. I wasn’t a great friend, or intern, or writer, or homemaker, or any of the other role in my life. I needed people who understood that I had a one-track mind, and I needed those friends to wait for me to emerge from whatever it was that we were facing.
In short, we loss mamas need what all of us crave when we are facing a scary situation …
Validation. Emotional, physical and practical support from loved ones. Proactive and knowledgeable professionals to work with. Grace for when we can’t hold it all together. And to know that no matter the outcome, our people will be there, waiting for us. They’ll be ready to love us through whatever comes our way next.
For my baby and me, what came next was sweet relief. After a year of tests for all the concerns, we found out everything was benign. Even though my daughter’s first year of infancy was scary, we didn’t have to face it alone thanks to an amazing support system who understood my needs.
What do you need when your rainbow baby is sick? Which need above do you find hardest to meet?