When my son was born we were so proud and posted the normal photos on social media to share our joy with the world. During his first week of life we shared only a few photos of our family holding him and everyone smiling ear to ear. Then something terrible happened. He became seriously ill.
Over the course of the first month of his life he was transferred from one hospital to another, finally ending up in a major city under the care of world-renowned doctors in a major city. A city we were unfamiliar with and far away from the ones we loved.
During the next 4 months, our hospitalized son was subjected to countless consultations from various departments within the hospital and what seemed like endless testing for various genetic conditions. Some of these tests took months to obtain results and were only administered in special labs in various institutions around the country and, eventually, around the world.
Struggling to manage the daily tasks of being a mom and a wife in this type of situation was exhausting. I became withdrawn from family and friends, overcome with an unfathomable concern for my sick child, the welfare of my healthy child, and the lack of any “normal” relationship with my husband while we were in this crisis.
After months of not receiving any definitive diagnosis, our son’s health was failing. We were all overcome with the fear of impending doom like a cloud floating over all of us.
My husband and I were obviously depressed, my daughter was doing poorly both socially and academically and if something could have shaken us to snap us out of it we would have been very grateful.
Don’t get me wrong, we were incredibly grateful for the kindness we were shown with the phone calls, cards, and prayer circles that were all going for my son and our entire family. But being a hours away from family and friends, alone in strange city, and sitting over your infant child whose health was failing is, quite frankly, depressing!
But someone did come along. She offered the smallest piece of advice. The advice was not to hide in our grief. Share what we were going through, even if we had to edit the details, because we had a community of people who truly cared, even if they were miles away.
I admit, I had to ponder the advice a lot because, to say this quite frankly, if you see something that is unsettling in life, your natural instinct is to turn away. My son’s situation was dire. He was an infant that no one, other than his nurses, doctors, and our immediate family had gotten to know. I wondered how I could express my joy of being a mother with the ultimate sadness of his failing health in a way that our family and friends can digest.
I literally was concerned, like a mama bear, how everyone would perceive our situation. How silly right? But my maternal instincts had kicked into high gear and I was in protective mode.
I ended up biting the bullet and facing my fears and letting our family and friends know what was going on with our son. The support we received was absolutely the most comforting thing we had felt in months. I would post what was going on as I found the time, because I was still filtering all of it, but when I did, I felt like I was lifting a weight off my shoulders and putting it out there.
We would read the replies and share them together with our daughter with smiles on our faces. We were able to find joy in the sentiments that were being sent to us. Our family was able to express our joy in the small milestones our son was able to achieve while in the hospital.
When it came time to decide on an extreme treatment, called bone marrow transplant, to save our child’s life, we were able to share this with our family and friends. Yet again, the support we received was tremendous.
I have to thank my step-mother for offering that small piece of advice because it truly did help our family get through some very difficult times by sharing our experiences with our family and friends.
This was over 5 years ago. Social media has evolved significantly with closed groups, support organizations, and many, many more people sharing their experiences and receiving the same hope we received from their families and friends.
I’m grateful for social media, because without it, the journey of life with a rare chronic disease can be a very isolating place.