An Open Letter to the Doctors Who Gave Up…
If I’ve learned one thing this year, it’s that you (doctors) really like to make blanket statements about the future of our children.
“He won’t walk.”
“He won’t talk.”
“He won’t play soccer.”
“He won’t drive.”
“He won’t…”
These are all things that have actually been said to me about my son, and I’m so tired of hearing them. What credentials do you have that allow you to see into the future? I’ve talked to so many moms of special needs children, and guess what I’ve found out? They’ve all been told the same thing.
“He/she will have severe issues in the future.”
“Good luck with that.”
“You can be prepared that he will be dependent on you for a long time to come.”
“There’s really nothing else you can do.”
The list goes on and on.
Why are you saying these things? I understand that you’ve been to medical school and are very, very smart, but I also know that the mama warriors out there have taught themselves a great deal of information in a very short amount of time, and we might even know the latest research and/or know our babies a little bit better than you do.
Let me tell you a few things about us:
- We have spent countless nights worried about our kids. We wonder what they may or may not do. Before seeing you, we have already typed out a list of all of our questions and grieved that our child may never walk or talk or drive or whatever other thing the internet has told us.
- You’re the best? We know. That’s why we’re here seeing you. And we have probably traveled across the country to get to you (or at least emailed you ten times, notified the hospital, called your secretary, found your cell phone number on our Facebook moms’ support group page…)
- We’ve done our research. We’ve already wondered about and scoured the internet for every short and long term solution/medicine/drug/therapy/exercise/treatment/specialist/surgery that might help ease our child’s pain or cure their medical issue.
- Our hands hurt. We’ve completed enough paperwork to replace all of the Harry Potter books with the medical documentation of our child, complete with every hospital stay, medication, doctor appointment, specialist address, phone number, and therapy he’s ever had or will ever have or may potentially be invented.
- We have a planner. That’s because that’s the only way we can keep track of our schedule anymore with all of our child’s appointments and therapies (and we’ve most likely hired a housekeeper or a nanny or we have a really awesome superhuman husband) that is keeping us somewhat sane with everything else going on.
- We’re now medical experts. Well, sort of, because we’ve read the latest medical journals and applied to the drug, therapy, or stem cell program at a prestigious university that has a really long wait list but we don’t care. Our child is going to get in.
- We’re fearless. We’ve seriously considered how to smuggle in the drug that isn’t approved in the US because it’s proven in other countries to be successful for our child’s diagnosis.
- We don’t need a pity party. We’ve had enough people look at us and pity us, feel sorry for us and give up on us. We don’t need one more.
- We’re tired. We’ve battled with the government, insurance, doctors, hospitals, therapists, employers, principals, counselors, etc to fight for our children and get them the care they deserve while we try to maintain a career and a household and a marriage and our friendships. Please don’t make this any harder by fueling our insecurities about our children. We’re exhausted enough.
- We pray. All the time.
So maybe, just maybe, if you are a medical provider, can you remove “won’t” from your vocabulary? Please try to understand how hard we are working so that this turns out OK. We NEED it to be OK. There might be a high likelihood of something not happening…there might even be a medical reason and 99% of the time it turns out that way. However, you can’t remove all hope from a mama warrior – we need hope.
Sometimes hope is all we have.
Sometimes that 1% chance is our only lifeline, and if you remove it, we will give up, too. Our babies need us to believe and keep fighting for them.
The next time I am in an appointment and you say “He won’t” I will just look at you and sigh. I’ll be disappointed that you’ve already placed him in the silo – the “no hope” silo. I’ll immediately start thinking of what new referral I can get, because I’m not coming back to see you, and everything you’ve just said for the last two minutes I’ve completely ignored, so we’ve wasted your time and ours.
Imagine if you replaced the words “he won’t” with “he may” or “he will…”
I have every confidence he WILL talk, and he WILL walk, and he WILL drive.
He’s the happiest kid I know, and the strongest. He’s a fighter, and he’s going to keep fighting.
#HeWill #SheWill #MamaWarriors