When platitudes start to make sense

When the Peanut was born, people would tell me all number of platitudes. The most common from nurses and hospital staff was that the Peanut “is not her diagnosis”. Internally, I scoffed. I was faced with another piece of bad news each day leading to an overwhelming list of medical issues. ┬áThis statement did nothing for me. It didn’t help me or the Peanut and it felt like it came from a place I would never reach.

But now, 15 weeks later, I’m starting to get it.

In a recent update from the Peanut’s paediatrician she outlined where her medical situation was sitting. Her paediatrician is a lovely caring woman, but tone in medical summaries is never warm. The reports are clinical and medical and lack any of the heart that being around the Peanut brings.

And then I got to this phrase:

“While development is progressing, the gap between the Peanut and normal is widening.”

In my head I saw the Peanut in her hospital bassinet alone at night, as she would have been each night, with wires coming off her. The words are like the hospital itself. They isolate me from her, from the people who love her. They make her something other than “normal”. They turn her beautiful smile into a disappointment and a sign of late development, rather than something to be celebrated.

The words put distance between us, and I’m sick of it.

I’m sick of hearing her diagnosis and letting it colour how I feel about her. Sick of hearing diagnosis and seeing her differently. I’m sick of hearing only the negatives. The Peanut is my baby and she is not her diagnosis. She is a person. With a beautiful smile.

If I could talk to myself 15 weeks ago, I’m fairly certain I would have about as much luck convincing myself that “the Peanut is not her diagnosis” as the nurses did, but I’m not going to feel bad about where I’ve come from. I’ll just feel good that in the place I’ve ended up, the platitude now makes sense.

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17 comments

  1. It is amazing what time can do. :) It is hard in those first moments/days/weeks when everything is fresh and raw and there is no visible light.

    I don’t fondly remember our first paediatrician appointment post discharge. I came away telling my husband that I hated the paediatrician. It took me a little while to get my head around the fact that I did actually like him I just didn’t like what he was telling us. We are now almost 12 years down the track with the same guy and we have a great patient/parent/medical professional relationship.

  2. We all do things in our own time. The peanut has a beautiful smile which no doubt reflects a beautiful personality and she will always be her own unique self.

  3. Time does help. I know from experience when your getting all the bad news it does change the way that you feel towards your baby. Time does make it easier to accept what is happening and to know how special your little one is to you. I understand the relationship you have with your pead. It does get better, well ours did and he was just as excited when out little one reached certain milestones.

    So please that you are coming out the other side. Just take one day at a time and enjoy your Peanut.

  4. Dear Tessa,

    Usually, in the morning, my mind starts working on my own poetry, but right now nothing seems more important than writing this to you.

    Last week, I wrote a somewhat tongue in cheek (me? go figure) blog about ‘liking’ blogs. One of the commenters wrote that a ‘like’ never seemed like it was enough. I can’t think of that sentiment being any more true than when I read your blogs lately. And at the same time, I am at a loss for what to say.

    What I can say is this: what I love about you Tessa, is your practical approach to everything, your need to be realistic and deal with the matter at hand. To me this speaks volumes in the amount of strength you have.

    I know you are facing difficult times and I am glad you are also able to find joy. Please don’t take my likes at face value. I am not merely ‘liking’ your articles, but saying ‘I understand’ and ‘I care’, even though that does not seem to do the matter justice. Wishing the best for you and your family.

    Your friend,
    Marissa

    1. Thank you for such a lovely note, Marissa!

      I absolutely understand the “like” issues when you just can’t quite think what to say, but want to acknowledge someone’s post. And I more than understand not having anything spring to mind when reading my posts. Many of my real world friends end up saying they don’t know what to say, and I absolutely understand. I wouldn’t know what to say to me either.

      Just knowing people are thinking of me, and care, means more than you could know.

  5. Ugh! What doctor wrote that? Hospitals are challenging places to feel human even without doctors with no sensitivity writing meaningless, hurtful commentary. Glad the Peanut is not her diagnosis anymore. Glad to hear about her beautiful smile!

  6. Ah you’re BACK! YAY!!! I am so glad to see you’ve been writing again! (Well, sharing what you write.) You have a gift for it and I seriously need you out there, telling your story, telling Peanut’s story. I’m very happy that this evening I get to catch up on no less than three posts (where have I been?). Beautiful little girl, beautiful words, beautiful mama.

    1. What can I say? When I decided to come back I had a lot to say! :)
      Very glad to be back, although I have to say, everytime I post something I have a mini panic attack about it.
      When I have had some low moments recently, I have thought of you and Lydia out there getting on with your day and it makes me feel better. Thank you for being there when I needed you! There is a blog post coming up with your name on it!

  7. Hi, I just happened upon your blog and wanted to drop a note since your story reminded me of mine. We also found out about some issues when my daughter was in utero and found more after birth which led to a rare diagnosis. My daughter is almost two now. It’s nice to connect with other people in similar situations and especially so since ours is so unique. Here’s our blog http://lifeofevc.wordpress.com. We don’t update as often and it’s mostly informational but you might find it interesting. Also, here’s another blog I follow that you might find helpful http://sociallyinappropriatemom.blogspot.com. Hugs.

  8. I’m so glad to read this post! My son was born with coloboma, micropthalmia and a heart anomaly about 6 months ago.

    I check in now and then to see how you and the peanut are doing.

    We are in different medical situations, but lots of the things you are feeling are very familiar to me.
    I can’t describe the shock, the grief, and the shame I felt when he was born. The shame I think was the worst- I felt so guilty to even have that emotion.
    I notice that each month I think I am “better” now- and only looking back do I realise I still had a long way to go.

    You seem more positive in this post. I’m so glad for you. My experience was that it continued to get better (apart from the bumps (read: another medical problem discovered) along the way).

    As you say, some things you can’t be told- you have to get there by yourself. But if at all helpful, these are things that have helped me so far:
    1) being confidently in charge of my son’s medical care. I wasn’t happy with the first opthalmologist we saw. So I requested we go to the leading eye centre in the country (even though that’s a 4+ hour trip). Turns out initial opthalmologist had misdiagnosed as I suspected. He’s now under the care of 4 different ophthalmologists for different aspects, each leaders in their field. It’s your child. If you are not happy, don’t be shy to ask a second opinion or ask to see someone else.
    2) meeting other parents in a similar situation, with slightly older children. I went to an event with the charity MACS ( http://www.macs.org.uk ). I found it so inspiring to see how kids can overcome the challenges they face. I remember one girl who was about 4, she was a complete cutie. She had so much fun that weekend. (She also had charge syndrome- deaf, severely sight impaired, tracheostomy, gastrostomy, learning and mobility difficulties). And seeing her with her parents – well, I won’t be so callous as to say it made me realise that it’s ok. But it made me realise that we all find our own route to a kind of ok, and that smiles and cuddles from your child- these are very precious indeed, cherish them whenever you receive them.
    3) any child with a sensory impairment will develop differently/ maybe more slowly than other kids. Don’t beat yourself up about milestones and timing (so much easier said than done). Celebrate the achievements your child makes all the more. Google developmental journal national childrens bureau – the developmental journals have milestones to help you record and monitor, without getting hung up on when they *should* appear. Also helpful activities to stimulate your child.
    4) my visually impaired baby has ticklish lips. Touching his lips as if I was touching around the points on a clock face is a surefire way to get a massive smile.

    Ok, way way too long response. Sorry.

    Just sending you love and “you are not alone”ness feeling.

  9. Those first days are so hard. I’ve been dealing with crazy diagnoses, birth defects, and “different-ness” for a long time now, and there are still times I feel isolated, both from other mothers and from my child (which ever child it happens to be that day). You are not alone.

    My youngest son was blind for his first five months of life. He still has impairment, but it’s much improved since we got on top of his hydrocephaly. Touch and hearing go a long way when you’re baby doesn’t see, or doesn’t see well.

    The labels help doctors and therapists to understand what tools kids need in order for them to be helped. But sometimes you just have to leave those words at the door. Don’t connect with the words. Connect with Peanut. Who is this tiny person?

    You can do this. And the best thing I’ve learned about being a mom for kids with special needs, is that I’m just a mom. My goal is to provide my kids with the tools they need to navigate their world more easily. And that’s just as true for my “typical” kids as for my SN ones.

  10. The best thing ever is when you get to the point when you just except the fact that she is on her own timeline she will do things when she is ready and not before. It was so hard because so much of the early developmental stuff is on this succinct and convenient timeline. Honestly we had a huge celebration this week because after 16 years, Kennedy learned to tie her shoes. She just could not get the coordination of all the pieces together to do it before that. She read and studied Shakespeare last year in English class, memorizes all of her lines and movements for dance in all of the high school musicals in her mainstreamed high school, and she is doing extremely well in many other aspects of school and in other areas of life but there are still those pockets of development and those things that they “should be able to do “by a certain age that I have excepted she will do on her own timeline. There really isn’t any kind of exact timeline for kids who have this diagnosis either. Peanut will have her own timeline and she will continue to delight and amaze you. And the celebrations are even bigger when you know how hard they’ve worked and how much they’ve overcome to accomplish these things that so many people take for granted. Even after 16 years. ;)

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