A few weeks ago, a friend reached out to me to ask for advice on a sensitive topic. One of her best friends was losing her son to a progressive disease called SMA and she wanted to know how she can best support her.
I had lost my firstborn son, Alex, to the same disease almost 7 years ago when he was only a few months old. I gave her some suggestions on what she could do to let her friend know she’s there.
If I had learned anything about grief and loss through the years, it is how incredibly isolating this journey can be.
The fact is, we all grieve differently. No one person's grief is exactly the same as another’s. The days after my son’s passing were a blur. Although he had a terminal, progressive disease we weren't prepared for his sudden departure (as if any parent ever could be).
The day he died, I remember vividly.
It was July 12, 2012. My son coded twice that day. The doctors didn’t think he would make it much longer and they were preparing us for the worst. We didn’t know how much time we had left with him and had to face so much uncertainty. I had promised him we would make it out of that hospital and be at home, but I was so terrified that he would die in that cold, sterile hospital room.
The hospital approved the ambulance to transport us home since Alex was so fragile, and they were worried he wouldn’t make it home alive. We were all scared. The paramedics rolled Alex and all of his equipment down to the ambulance. I distinctly remember how his eyes opened and he lit up. He was so happy to be outside, even if it was for a little bit. He kept his eyes open the entire ride home and I could tell how happy he was. He was going home alive!
After we got home and settled in as best as we could, I looked at my son and held his hand. I could tell he was really happy to be home and he didn't want to sleep. What happened next, I can hardly explain. I was starting his scheduled respiratory treatment and noticed his monitor was beeping. His oxygen saturation numbers were going down and his heart rate was also coming down just as fast. At one point, both numbers showed zero. My worst fear! What do I do?! I panicked just like any other mother in this situation would do.
How could life be this quick?
We quickly proceeded to do CPR. Me, my husband, the hospice nurse and my sister. We all took turns. It didn’t work. The numbers were fluctuating a little but the nurse explained that it was just from us pounding on his chest. After what seemed like 5 or 10 minutes I looked into my husband’s eyes ,and without uttering a single word, we came to an agreement. We stopped CPR.
We didn't want to pound on his little chest anymore. He wasn't coming back to us.
Alex waited until we got home so he could pass away peacefully with us. I didn't want him to die in a hospital room where the response team would flood into our room for a code blue. I didn’t want the doctors, nurses, residents and other staff to come in and take notes on what they saw and then use that as their “lunch-hour conversation"." I didn't want my son's diagnosis or his death to be another case study for them. I wanted people to remember him as baby Alex who had a family that loved him unconditionally.
The following days were hell. I had to make decisions I never thought I would have to make, especially in my young life. What kind of casket would we want for his body? Would he be cremated or buried?
Four days later we had our child's funeral, and that was it. We buried him on another very hot July summer day… and with that we said goodbye to him forever. Well-meaning people tried to make us feel better by saying things like, "you'll have more kids" or "he was really sick.”
Days and weeks followed the burial and I felt more isolated than ever. I had my husband as a support. But I wanted to talk about it and he didn’t. Sometimes we sat in silence together and other times we would fight.
I felt like everyone went back to living their lives and mine stood still. With losing my son, I lost my sense of identity. I went from being a college student, to being pregnant, then having my son and becoming a young mom and then, in an instant, I was a childless mother.
I put my life and my career on hold so I could raise this baby and just like that, he was gone.
I didn't know what to do with myself. I had to pick myself up some how, but I could barely carry my own weight.
There's really no place I could have gone where I would feel ok except the cemetery. I would visit my son almost every day. I would bring flowers or little gifts and talk to him and other times I would walk around and visit the other babies. Sometimes I googled their names to see how they died.
I was obsessed with death.
I met other moms in a support group for grieving parents. We all loved our children, but felt out of place in society. Our family and friends distanced themselves from us and either couldn't handle what had happened or didn't want to deal with having friends who had gone through something so tragic.
I don't have many friends left. It's easier for me to meet new friends and start from scratch. I miss my old life and the innocence of it all. But that is in the past and I know I’ll never have that life back. I’m a changed person now and I see things differently.
I will never be naive about life again. Nothing goes as planned, no matter how hard you try. You can't control a miscarriage, infertility or a diagnosis. But what I do know is that even though the past cannot be changed and the future cannot be predicted, you can embrace the present, if you choose. You can be a better parent, husband, wife, sister, brother or friend to others, because you know, first-hand, how precious life really is.
It's been almost 7 years since Alex's passing and I have finally come out of the fog that once surrounded me. My two kids have given me a sense of direction that I was craving as I was early in my grief.
Sometimes I meet people who have lost loved ones and they seem unable to move forward. I get it, I was there once. I didn’t think I could live without my son and I didn’t know how I could go on. I didn’t know if I would ever smile again. And when I did, I felt guilty.
Grief is challenging. Moving forward is challenging. But do not be afraid to find happiness again. Do not be afraid to find purpose in your life again. I know it seems easier said than done, but I am in a different stage of grief right now and I have accepted my son’s death.
I have found a new purpose through my two younger kids.
I find peace in knowing that there was nothing I could have done differently to save my son’s life. I find peace in knowing that he was in pain and after he calmly passed away in my arms, he found freedom. I find peace in knowing that he was loved, wanted and cherished every day of his human life and that if love could have saved him, he would have lived forever.
-Joanna, Mother, Chicago, Illinois