The year after our daughter was diagnosed with a terminal illness was the bleakest of my life. It was vibrant colors painted on a gray background. The weight of the diagnosis was coloring everything that we experienced. It was running through mud in an evening gown, a beautiful mess. Every day was a challenge and exhausting to keep moving forward. If we stopped, we risked losing momentum and standing in quicksand. Never before had something rocked us so deeply to our core.
That diagnosis was handed down over six years ago now. We have learned a great deal about coping mechanisms, navigating insurance complexities, local resources, handling diagnosis envy, adjusting to “new normals” as our daughter deteriorates, finding balance, and so much more. There is one thing that I want to reflect upon and share with you. I wrote a public service announcement of sorts to our friends and family just after that first year of mourning was coming to a close.
We had just found our strength post diagnosis.
Often it is hard to find the words to convey to your friends how you are feeling and what you may need. The truth is, they are equally as scared of talking to us. As we have experienced, when both sides worry about doing the “wrong” thing, both end up doing “nothing.” Then, as time goes on, all parties end up feeling guilty for not connecting and the relationship dries up.
To those we have just been diagnosed, here are my words from that truly difficult time. May you find your own way through the darkness and find strength, courage, and friendship to make your path a little brighter.
Post Diagnosis PSA
It appears that there is now a giant elephant in the room. Its name is A-T, and it apparently has the ability to make those in our company unable to speak. It renders them speechless, and somehow sucks away their ability to remember that we are pretty much the same people you have known and some loved for a long time.
I think this must be a common problem for people who have a major upset going on in their life be it divorce, job loss, infertility, or any other major diagnosis. People don’t quite know what to say, and so they dance around the giant elephant floundering all the while. If you don’t mind, I’d like to help.
Um, hi, my name is Becky. I like to make sure that people know that it’s ok to talk about that giant elephant in my room right here. After all, he’s stinky, quite large, and is taking up a lot of space in our world. It’s ok to bring him up. Perhaps we should give him a human name so we may talk in code when the munchkin is around. We try not to talk about the elephant in front of her. Despite our daughter’s diagnosis, we want life to be as normal as possible.
Hmmm. Let’s call our elephant Fred!
You see, sometimes we actually need to talk about him too. He’s a very real part of our life. However, in all actuality, he’s been a part of our life for a long time. It’s just only recently been given a name, a diagnosis. So, it’s ok. Don’t be nervous. You can say you are sorry to hear about it. We all know just how bad it is. It’s way more awful than drawing the short stick. It’s beyond stinky. You may not say everything right, but we don’t expect you to. If you hurt our feelings, we’ll gently guide you to our train of thought.
We won’t get mad. We will be honest with you about our emotions. This is going to be a crazy journey, and we want you there…need you there with us.
So, yes, my name is Becky. Have you met our elephant? His name is Fred. Please, sit down and make yourself at home.
Now that we have acknowledged Fred, we may discuss his newest antics or just move on to other topics. Regardless, we are just happy you are here. We still love the same things, traveling, photography, playing with our children, cards, swimming, movies, baking, laughing with friends, and more. Those are all excellent subjects to talk to us about. You are not diminishing the elephant (our child’s diagnosis,) by talking about “normal” things. We are mostly still the same people we were before the big bad diagnosis.
Our hearts are broken, but we still love each other, our life, and our children beyond measure. We wouldn’t change a thing. Ok, so we would change the fact that Bea has A-T, but since we can’t…you get the idea.
You can still joke with us, laugh with us, and even cry with us. I’m still Becky, just a Becky that needs to be a heck of a lot stronger than she’d ever thought she’d need to be. We are still the people who want to share that yummy recipe we made last night with you, but we may also want to talk about a particularly hard day. Oh, and it’s ok for you to talk about your bad day too. We understand over here that getting a paper cut stinks, so does stubbing your toe, or fighting with a friend.
We are not going to compare our level of awful with yours.
Our bad stuff doesn’t erase yours. We aren’t competing here. What would the point be in that? That’s a competition you really really don’t want to win anyway!
So, yes, please talk to us about what you would normally. You are allowed a bad day too. That’s ok. You are also allowed to have a beautiful day. We like hearing about those too! Just be sure to recognize we may be a bit nervous talking about Fred. We know it is hard for people to handle our big feelings about him.
While there are days the elephant feels like he has been sitting on our chest everywhere we go, there are more times that we leave him chained to a big sturdy tree, so that we may go enjoy our beautiful day! We have fun too. Sometimes we have to escape the diagnosis and pretend as much as we are able that it isn’t even there.
So that’s my public service announcement for the day. Please don’t shy away from those in your world who are going through something big. They need you. Sometimes just knowing that somebody thought of you is enough to bring a smile to your face and warmth to your heart. So, for the record, you can still call and talk to me about that killer new nail polish you’ve found. After all, finding the right shade of red can be a tricky feat!
How can I help?