Here are a few of the lessons I’ve been learning and re-learning over the last six weeks about life, grief, and suffering. (If you’re new here in the last little while, here’s some context.)
Lesson #1: Find Fellow Sufferers
I am discovering the importance of connection during suffering, and the relationship between isolation and suffering.
Does that make sense? Let me explain.
One of my greatest assets and coping mechanisms throughout this experience has been connection with parents in similar situations. There is just so much comfort in knowing you’re not alone.
All types of suffering have become a point of connection — I can suddenly relate to families who have lost children, who have children with special needs, etc — but the greatest comfort comes from folks whose suffering is most like ours. My favourite people in the world, suddenly, are moms with SCID babies. They get me. And they offer me hope. Because somehow they are surviving this.
By contrast, some of my hardest moments have been when I’ve felt most alone. When it has felt like everyone else in the world has healthy children, and we’re the only ones with a sick baby.
True, I have gotten incredible comfort from every kind word or donation we’ve received and every prayer that has been said on our behalf. But BY FAR the most comforting words have come from those who have been here. THEY GET IT.
I’ve spent a lot of time comparing the pain of infertility I experienced years ago to the pain I’m experiencing now. And I think part of the reason infertility cause so much suffering was because I felt SO ALONE. I knew there were others out there but at the time I didn’t know any of them personally. I felt so isolated. Like a freak.
I am reminded once again of the importance of sharing our experiences. There is power in suffering together.
This is what I have learned: DO NOT SUFFER ALONE. Do everything you can to find fellow sufferers. The internet is a spectacular tool for this. (It might even be the internet’s greatest power.)
(Side note: when my brother-in-law was diagnosed with autism 24 years ago, my mother-in-law had never heard of the disorder. It wasn’t until he was four and a half that she met another autism mom. Finally, she could feel less alone. And autism affects about one in 75 children. Do you know how long it took me to find two other moms of SCID babies after Felix’s diagnosis? Which occurs in about 1 in 100,000 babies? About a week. They found me. Within a few more weeks, I met two more moms whose babies have ADA-SCID — Felix’s particular type of SCID, which only accounts for about a third of all SCID patients. And they both live in Ontario. And they’re Christians and they’re wonderful people. Hallelujah, thank you Jesus for the Internet.)
If you are in the midst of a crisis, you are not alone. You are NOT. Someone else is going through what you are. Find them. Reach out to them. I urge you. You will both find comfort in each other’s friendship.
Happy people probably don’t really want to hear all the details of your suffering. I mean, if they love you, they do to a point; but it doesn’t bring them joy. And they can’t really help you. Not the way a fellow sufferer can. They can be sympathetic and help take care of your physical needs, but they can’t help you feel completely understood. They can’t help you from that wrenching feeling of isolation.
You need to find fellow sufferers. The more like you they are, the better. They will actually find joy in hearing about your suffering, as weird as that sounds. Because they will see that they’re not alone.
(Note: By all means, maintain your relationships with happy people. They will help you make it through, too. But you will need more than just them.)
Lesson #2: The Transience of Suffering
This one I keep having to learn over and over again. I will probably have to learn in again tomorrow.
So many times in the last weeks, I have gotten frightening news about my baby and responded by thinking, “I will never be happy again.” I feel like my life is over. This is it. The end of joy. This time it is definitely permanent. I will never experience happiness again in my life.
And then the next day, or even hours later, I find myself laughing hysterically with my awesome husband. I may still be in the hospital room with my tiny son hooked up to a dozen tubes and monitors, but for the moment I’m at peace and even amused at something we’ve just shared. I feel hopeful. I feel . . . like myself.
The sick, sinking feeling of hopelessness and grief will come back; but never for more than a couple of days at a time.
Sadness and suffering are never permanent. Even if they last for years — and the might — a day will come when it will be over. The pain will be a memory. I have that to look forward to.
This too shall pass.
Lesson #3: Accept Help
Right now, have zero spare resources. Caring for Felix is sucking up 101% of my energy and emotional faculties. I have to remind myself that I cannot feel guilty for not doing anything more than that. I can’t feel bad about failing to make the world a better place for anyone but my son right now.
Right now is a period for receiving. I’m going to take it. I will give to others again some day. But right now my job is to accept all the love that is offered me, because otherwise I might never make it to a point where I can give again.
So I am holding out my hands and receiving everything that comes my way.
(Thank you, kind friends, for offering it. Hopefully someday I can return the favour.)