I am a Momma Bear to a young man who experiences intellectual and developmental disabilities, medical complexities, and a rare genetic disorder. Of course, when he was born, we had no knowledge of anything of this.
As we learned more about our firstborn son, that first year of his life, we also learned, rather quickly, that doctors and specialists, in some cases, really didn’t have any more knowledge than we did.
That was when we learned about and became Momma Bears.
What is a Momma Bear?
So what is a Momma Bear, you ask? I was raised in Alaska which is known for its population of bears; black, cinnamon, grizzly, brown, and polar. I was taught to NEVER stand between a momma bear and her cubs. It didn’t matter if those cubs were 15 feet up a tree, if you got between them and their mom, you were going to regret it!
In the wild, momma bears will take on all comers to defend their cubs. It could be a human walking a game trail or a male bear twice her size. She is afraid of nothing and takes on all challenges, even when the odds are not on her side.
That is my definition of a Momma Bear. A parent that advocates for their child as strongly and fiercely as need be, to make sure their child is safe at all times and able to live their best life.
How does someone become a Momma (or Pappa) Bear!
It is a joke in my family that doctors are dumb; we don’t really mean that. What we really mean is that a lot of doctors, especially specialists, are so focused on data and symptoms, that sometimes they forget that they are talking about living, breathing human beings with feelings.
Once a family with a disability diagnosis reaches the point that they understand doctors are stupid, that is when their transformation to a Momma Bear begins. Once you understand that doctors don’t have all the answers, things change. You realize that it is up to you to fight the good fight. To make sure your child gets the love, care, and support that they need. And nothing will stand in your way to make that happen!
Being a Momma Bear means taking on an advocacy role. This happens whether you want to you not. You will end up running over anyone standing in your way!
When does someone become a Momma Bear!
Before having my son, I rarely went to the doctor for myself. Maybe once a year. If a doctor told me to do something, I did it because I figured he knew best. I didn’t think to question his diagnosis.
Fast forward 19 ½ years after my son was born, and I question EVERYTHING! In 2021, I fired 2 neurologists and 3 pulmonologists because they dismissed my concerns. We were talked to like we were idiots, wouldn’t respond to urgent questions, or had dangerously inefficient office staff. I would never have imagined doing anything like that in the past!
Don’t make a Momma Bear mad!
Just because it still ticks me off, let me tell you about the first pulmonologist I fired. We had been out of the hospital for a week from an emergency bowel obstruction that turned into an emergency tracheostomy. I was mentally, emotionally, and physically exhausted and looking for answers about why my son now had a trach and who was going to be helping us through this unexpected twist in our journey.
This butt nugget of a doctor had the gall to stand in the hallway of his busy clinic and talk to us through our open door so that everyone could hear him. In the exam room were my son in his wheelchair, his support worker, and myself.
This “doctor” looked me in the eye and told me in a loud voice, “I can tell you how your son is going to die. He is going to have a seizure, go into respiratory distress, and end of story. No hope.”
I stared at him blankly, amazed that this thoughtless, disgusting, facade of a doctor had the gall to make that pronouncement when he had only met my son for 15 minutes and he hadn’t even bothered to read his chart (he admitted this, by the way!). And then to make that God-like pronouncement not only in front of my son but in front of the whole clinic!
His boss was the next pulmonologist I fired because he said he agreed with everything the first “doctor” said.
Because this Momma Bear wouldn’t settle for that destiny for her son, we now have a pulmonologist that doesn’t agree with that decree and believes with the proper care and preparation, we can get my son, maybe not completely without a trach but at least off the ventilator. He responds to our urgent questions and spontaneously calls us on occasion to see how things are going. Amazing!
I wanted to share this story because you don’t have to just blindly accept a diagnosis or recommendation from one doctor. You have the right to get 2nd, 3rd, or 4th opinions until you find the right doctor with the right fit for you and your family.
Whether you think you can, or you think you can’t–you‘re right.’ ~ Henry Ford
How many of us have heard stories of someone who only was given a month to live and then went on to live another 20-30 years? It’s because they didn’t accept what they were told. If they had, they would have rolled over and only lived another month, when they could have had their whole life before them.
I am more passive/ passive-aggressive by nature. But now, (thank goodness!) when the need arises, this Momma Bear will roll over and check in on her cub. And if she does that, you better be treading lightly, because it won’t take much for this Momma Bear to come roaring to life and take a swipe at anyone who is denigrating or misdiagnosing her cub.
Trust your inner Momma Bear
My takeaway for you in all of this is to trust your gut, trust your instincts. Doctors aren’t magical creatures that were given all the answers. The downside to this is that because they don’t have all the answers, we have to be willing to do whatever we can to find the answers and support that our precious children need and deserve.
Becoming a Momma or Pappa Bear is not something that someone can teach you, but it is inherent in all of us as we learn to defend our beloved cubs to the best of our ability. If that means turning over every rock and stone to sniff out the information and support that we need, we have to be willing to get a little dirt up our snouts. We will just have to shake it off and keep plodding away, always traveling this unexpected pathway in our journey of life.
You can do it, Momma Bear! The rest of us Momma Bears are out in the forest with you and will roar in solidarity when you need it most. Chin up, claws out, you got this!
If you like this post, you might be interested in these other articles:
Planning For Transition to Adulthood
How To Protect Your Medically Fragile Child
Why You Need Procedures And Protocols For Caregivers