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.

SH_07 2012-12-11

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:

P1000686-002

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.

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19 thoughts on “The Diagnosis is Not the Person

    • She is just a beautiful child who can love unconditionally and should receive the same. She is one of God’s angels and I love her for what she is. Just a beautiful baby girl. God bless her and all her family!!!

  1. Thank you for this post. We are all too familiar with people treating Liam as his disability. It is heart breaking.
    I see your Evie as a beautiful child and her photo just made me simile! She’s very fortunate to have you and you her.

  2. I really enjoyed this post. I work with a lot of parents (informally – it’s not my profession) whose children are diagnosed with developmental delays later, particularly those with ADHD or ASD. The thing that I *always* remind parents (aside from letting them know that *any* of their feelings about the diagnosis are valid, and they should take time to work through those legitimate feelings) is that your child is the same child today as s/he was yesterday. Yesterday you had a vivacious fun little boy and today he got a label/diagnosis, but that changes nothing about your child. The diagnosis is used to help justify the treatments or therapies that you may need your insurance to cover, or the school system to accommodate with an IEP or 504 plan, but it doesn’t change the essence of who your child is. I think it’s important to keep that in your head as a parent because so many OTHER people will forget the child in favor of the label/diagnosis.

    Evie is stunning – and she looks happy and fun. What a beautiful little person you have in your lives.

  3. We have learned so much from reading your experiences with Evie. In the first place, we had never heard of Charge Children. Secondly, we have never had to be around a “struggling” child, (God has blessed us with healthy, or normally functioning children so far) but you are teaching us to look from your side of the coin and that is a lesson so many of us need to learn. We all need to see your struggle and be there to support you on the “frustrating” days, a shoulder to lean on in the sad and trying days, and most importantly, a reenforcement of Evie’s need when we meet and visit with her. One day, she will have to learn to deal in the world alone, and if we don’t know how to work with her, we make her road so much harder for her. Just learning sign language will let us communicate when she is doing wrong or in need of some type of assistance. They say “we all need to learn a second language” and what better way to communicate with a deaf child?

    Maybe God is leading you into a journey of life’s work that you would never have understood or thought of doing, Megan?? Maybe someone reading these posts will also be lead into rethinking on their life’s road. (Therapy, science and teachers of exceptional children, a mommies’ helper, house parents for these people needing assistance in group homes……..who knows who’s life you may be reaching with these “personal” and informational posts. I truly hope you are saving them and one day put them into a book or reference for other parents who are searching for answers and feel the world has deserted them. These links will prove to be priceless for a someone.

    Thank you…………..and keep them coming. The Holdings from Indiana

    _____

  4. Beautiful words. When we cannot figure out what’s going on with our child, when they need help… We need those labels. Those labels open doors, get them testing and treatment and medications, get them services, help us understand them. But they can certainly box them in, limit them, and hide who they really are as well. Our children are SO much more than a list of their diagnoses.

    Your daughter is beautiful! 🙂

    • Most definitely those labels are useful! We are very grateful for each diagnosis that gives us a “game plan” of what steps are next. But you’re right, when those labels aren’t fully understood, they tend to be limiting as well.

      • This post had struck such a chord with me due to the long list of dx codes used in describing my daughter as well. As with yours, what do they really mean sometimes? On paper the codes mean little without a lot of elaboration and knowing a history- and even then, in the case of my daughter, her condition has fluctuated dramatically over the years. Sometimes for the better, sometimes for the worse, but the icd-9 code alone is not going to tell you that.

        I’m so grateful for the therapist who administered her last motor eval. Did she decline? Yes, but the report made my day- among the clinical details were little snippets showing who my daughter really is- the pride she showed in her accomplishments and determination to master the tasks put in front of her.

  5. I love the picture!! Evie does not look like a diagnosis at all, but a beautiful little girl. As I read ” I wish another mother could come in, hold her hand, and interpret the “facts” for her,” I found myself thinking that at some point, I hope you will be that person! It’s a whole new world for so many parents and too many times they feel like they’re walking alone. This blog is a step in that direction. Thank you! I love sharing this with the parents I work with.

  6. Awesome, awesome article and little girl and mother! You are so right. Words have an enormous impact. My child has CHARGE. He’s not a CHARGE kid or any other term that makes his diagnosis a primary part of what people say about him. He’s a very handsome, blonde haired, blue eyed young man who loves music and is very charming. He just happens to have CHARGE. Thanks for sharing your thoughts!

  7. Megan – beautifully written! I fully understand your concern and sentiments having lived this life for 19 years now. It’s nice to hear it stated so eloquently from a newer parent:)

  8. Thank you for this post, we can really relate so well…we also were given the worst case doom and gloom about our son, we always did have so much hope and faith and he has overcome many obstacles that we were told over and over again he would never accomplish. At that time hearing those terrible “facts” was like taking a bullet and now we always say when he hits a new milestone that hearing those “facts” from the beginning of our journey only make his accomplishments ten times better! We also are always saying how terrible he looks on paper and agree with everything said! I am enjoying your blog and so glad I came across it, your daughter is beautiful and precious!

  9. Your daughter is adorable! We have a large family and 3 of our children have a long laundry list of diagnosis. 🙂 They are people! Our son, whom they declared brain dead at 16 and 19 days, is a school teacher. 🙂 Our daughters are happy and healthy girls, full of life.
    You are so correct! Our children are not a diagnosis.

  10. Thank you! My daughter, Zoey, was born with CHARGE almost 7 years ago. She died when she was just 3 months old and her ‘list’ of “imperfections” seemed to grow with her as she grew.

    She, too, was an amazing, bubbly, wildly sweet, little girl with a whole world of potential. It’s hard to seperate the “diagnosis” from the little person inside.

    Your daughter is gorgeous and your post was inspiring!

  11. Pingback: A Long List | All That Hath Life and Breath

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