The Diagnosis is Not the Person

Ty and I have been talking lately about how incredibly bad Evie looks on paper. There’s a reason every single person who has read Evie’s list of diagnoses is shocked to no end when they actually meet her. She’s NEVER what they expect.

Her long list of past and ongoing issues cannot capture her spunk. There’s never a spot in her medical records for “Smiles with whole body and makes hearts melt” or “Loves to pick fights with big sister because she wants to wrestle” or “Is one of the top snugglers in the world and can make her mama’s heart swell with so much love and joy”.

No. You won’t see those things in her medical records.

In a culture where it only takes a doctor sharing a possible diagnosis with expectant parents for that child to be deemed worthless, this is incredibly sad. An ultrasound. A blood test. Neither can tell the parents WHO their child is, only list some of his or her possible struggles.

And then I wondered, who DOES look good on paper? If someone were to list all your struggles, all your “imperfections”, all your past and ongoing issues, all your possible future challenges, with no mention of your accomplishments, your personality, or your impact on those around you, how would YOU look? Is it something you’d want to pass out to everyone you meet? Would you want it to dictate your value to the world? I know I wouldn’t!

So why do we do that to children? Why do we base their value on just the “con” side of the list?

One reason, I think, is that the general population does not understand that a medical diagnosis has degrees.  One label can have a huge spectrum of severity. Take Evie. She is labeled DeafBlind.  DeafBlind does NOT necessarily mean that someone is 100% deaf and 100% blind.  It simply means that both senses are impaired to some degree (or in a child’s case, are possibly impaired. Evie’s vision seems to be great despite the coloboma in her left eye, but she’ll keep this label until she can tell us her vision is okay since kids can compensate so well).  People see a label staring out at them and don’t realize that label can mean a whole slew of things. They let the fear of the extreme case in a textbook dictate their actions.

And this isn’t even all of them!

Another reason is that (most) doctors are incredibly pessimistic.  I’m sorry.  It’s true.  We learned pretty quickly in the NICU that a doctor will give the worst case scenario and the nurse will give you the truth.  I imagine there’s some legal stuff going on, doctors feeling that they need to be all doom and gloom so you don’t come back and sue them, but there’s also their focus on the “facts” instead of the child.  When we left the NICU, we were told Evie was going to be deaf and blind and never really do much.  We only heard discouraging “facts” about “Evie, the CHARGE baby” (“facts” that didn’t truly represent the huge spectrum present in CHARGE).  But what about who Evie was – the spunky baby with so much determination to do what she wanted to do (like yank out her feeding or breathing lines)? What about the Evie who loved to look at her mobile? Or the Evie who moved and wiggled once she got her trach and could finally breathe? Or the Evie who became agitated when the suction machine was on or a particular neonatologist was talking (somewhat random funny/sad story: Evie would get very upset and crying, dropping her oxygen levels and shooting her heartrate up, whenever the neonatologist who had admitted her the day she was born would come in her room and talk. That doctor was only with Evie for a few hours when she first arrived, but weeks later when that same doctor showed up, she freaked out!  We finally got to a point of making the doctor stand outside whenever she wanted to talk to us! Babies DO remember. Don’t let anyone tell you otherwise. Fortunately, they’re also very resilient).  They painted an extremely grim picture for us, one that was incredibly discouraging to us, and she was ALREADY here in our arms!  I hurt for the mothers who are given such a grim prognosis for their unborn babies. And yes, all of those things COULD HAVE BEEN TRUE.  But do we base a child’s value on what could happen? On what their limitations might be?  Or do we start teaching ourselves to see a child instead of a diagnosis? A child that, regardless of limitations, is valuable.

I wish a diagnosis could be given by another parent walking that road.  Instead of a doctor delivering the “facts”, I wish another mother could come in, hold her hand, and interpret the “facts” for her.  Explaining what the long list of diagnoses actually look like in the real world instead of a textbook.  And then offer her the “pro” side of the list to compare with the “cons”.

I saw a picture recently of a young man with Down Syndrome and it said “Your words, attitudes & actions impact my life more than my disability” and it is so very true.  I dread the day when Evie will be able to see how people respond to her, sometimes with disgust and fear.  It breaks my mama heart that even now people only see Evie’s equipment and can’t see HER.  I mean, come on! She is ridiculously adorable!  Seriously.  How can people look at this sweet face:

She’s not what you’d expect after reading that long list, is she?

And be afraid or disgusted?

How? Because they only see her diagnosis. They only see the trach, the hearing aids, the gtube, the AFOs.

Please see her.

The diagnosis is NOT the person.  Please see our children for who they are, not what’s listed in their medical records.