Hope is a dangerous thing

A short note: Thank you to all the people who have stopped by and left comments of support. I have continued to read all of your blogs and check up on your comments in my absence. I cannot say that this is a full return, but I had a desire to write tonight, and couldn’t see why I shouldn’t.

 

Hope is a dangerous thing. And when I’m not paying close attention, my own stores get refilled to unrealistic levels.

When the Peanut was first given her list of many ailments,  at each stage I held out hope. When I read up on grief it turns out this kind of hope is akin to bargaining. I told myself that I could handle what we had been told but not the next step on. I held out hope that we had heard all we had to hear about what was wrong with her.

At a certain point it did feel like we had heard the worst. But by then there were no more worst case scenarios, we were living it. I couldn’t see how we could get any more bad news. When we found out she was deaf on top of being blind and with brain abnormalities it really felt like there could be no worse news to pile on us.

And I was almost right.

While they had no more new bad news to tell me, the doctors found ways of telling me what I already knew as if it were more bad news.

After we had been told the Peanut could not see we saw the ophthalmologist again. He inspected her eye and drew back in surprise.

“I feel a bit ashamed of my earlier reading of her,” he said. “It’s looking quite different to what it did a few weeks ago.” I shook my head a little and assumed he meant for the worse. I was so accustomed to hearing bad news, my brain wasn’t wired to hear anything good.

He explained that her eye looked in a much better state than before, but that there was a cloudy haze in the centre of her eye. He pulled the surgeon in to have a look and the surgeon exclaimed that if the haze went away she should have reasonably normal vision. She could even be able to read a sight chart.

I could not believe it. My little Peanut, who had been declared blind, might be able to read a sight chart. She could be able to see.

On the way back to the ward, the nurse said she had held her breath as he delivered this news and hoped he knew what he was saying.

I told her that after so much bad news I was highly cynical of any good news, so not to worry about me getting my hopes up.

But hope is insidious.

Two weeks later we saw the ophthalmologist again and what I hadn’t realized was that part of my brain was hooked on hope and was pinning a lot on this appointment. He told us the haze was still there, but her eye looked quite good otherwise. He scheduled one more appointment for when the Peanut would be 8 weeks old and said if the haze was still there they would schedule surgery. He told me you have to get in before they are 10 weeks old if you want to ensure vision.

At the 8 week appointment, just last week, the ophthalmologist said she needed the surgery. They would remove the hazy part in the centre of her eye and hopefully give her some vision. They talked me through the surgery with a diagram, and both the surgeon and the doctor seemed optimistic.

The woman who a few weeks ago told that nurse she was cynical about any doctor’s promises was jumping into hope like it was a hot bath. She wanted this, more than anything.

So today, I find myself in the children’s ward, hope gone, with the Peanut recovering from general anesthetic in the cot next to me.

The Peanut’s eyes are not swollen from surgery. There are no bandages. Her eyes aren’t bloodshot. Because the Peanut didn’t have her surgery. The surgeon performed a thorough eye exam first, while she was asleep, and found that the surgery would be useless. They could remove the hazy area, but the rest of her eye was not going to be able to work anyway.

The Peanut is still blind, and will always be blind.

At best she will see light. So she will know night and day, but not her parent’s faces.

This news is the same we heard all those weeks ago. But now it feels like a double blow. When they couldn’t find anything new to tell me, they told me an old piece of news and made it hurt like a brand new wound.

 

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25 comments

  1. You’re at the coalface of each twist and turn, as parents you can’t help it. I’m sorry to hear of this … you had me bundled up in hope there too – and it felt good. There is something poignant in the doctor’s comment about her being able to see light. Such a profound expression we use day to day – if she can see the light – she is an enriched soul. Hugs and love. x.

  2. I’ll be sure to keep you in my thoughts. I’m Heather and I was hoping you could answer my question about your blog! My email is Lifesabanquet1(at)gmail(dot)com :-)

  3. You’re here! I’ve really missed your voice, your writing. I think about you all the time. Oh Peanut. Pema Chodron writes about how insidious hope is because it takes you away from the present moment. Well my present moment is often something to be escaped from! Really it is much too much to have the doctors tossing your expectations around. The Emily Dickenson poem is often in my head, “hope is the thing with feathers that perches in the soul…”

    1. Thank you, it’s nice to be missed!
      I agree sometimes I think if we didn’t have hope we wouldn’t be able to escape. Just hurts a lot when it gets pulled out from under you. It’s sad really because the blindness was the first thing we had come to terms with, but now that it’s back in another way it feels harder.
      I like that Emily Dickenson quote. Very apt. Digging its claws in, that thing with feathers!

  4. Lots of hugs. Glad to see you writing, but sad that you are hurting so deeply. Your strength and courage to share your story with us is unbelievable. Peace, peace, peace my dear… that is my prayer for you and your family.

  5. Sorry Tessa, I am sitting here in tears. I had so much hope reading that. Then bang as you say it is all ripped out from under you. I really don’t know what to say. You are a very strong and courageous woman. You will teach your peanut to be just as strong and resilient. I’m sure. You are doing a great job. It is great to get an update. I bet your little peanut is growing so quickly. Just remember we are all here to support you thru your journey in any way we can.

    Thinking of you and your family.

  6. I have checked in so many times hoping there would be words from you. I was looking forward to a miracle post because I was sure that was what would send you back here. I am so upset for you all that a glimmer of something good has been taken away again.

    I think of you often.

    xxx

  7. You and your partner are obviously very strong brave and courageous people and peanut will have that strength inside her and be made stronger by being surrounded by your strength and courage. Not for her the humdrum of our day to day insignificant woes. Thinking on you often.

    Does she still enjoy her bath?

  8. Oh Tessa. I’m crying and there’s nothing I can write. I’m sorry. I think about you and the Peanut so much, and even if she doesn’t ‘see’ your face, she knows you. You are her everything Tessa and you have so much strength and she will know that xxx

  9. I have no miracle words but can offer hugs. She will know your face though and probably better than any sighted baby. She will learn every nook, cranny and wrinkle of your faces through her touch! Stay strong xx

  10. Hi Tessa,

    Thinking of you and your family.

    How are things with peanut? I hope that she is growing well and you are enjoying your time with her.

    1. Hi,

      The Peanut is going well. She is starting to move her legs more, and is pretty happy most of the time.

      There have been some personal developments however, which are fairly crazy. Including Mr. Million managing to extricate himself from the situation leaving me and the Peanut to our own devices.

      I feel like I am a character in some unbelievably dramatic soap opera.

      1. Oh Tessa,

        I don’t know what to say. I’m really sorry that you are having personal issues as well. You all need all the support you can get at the moment. Trust me I know it can be hard. It was terrible when I had the twins you need great support. I hope that Mr Million wakes up really soon and realised what a wonderful family he has and what he is missing out on.

        But it is great to hear that the peanut is going well. I think of you often. You are a very strong person and you will teach your peanut to be just as strong and courageous. Your doing a wonderful job.

        Just remember that we are here to support you and give you a virtual hug when you need it and when your feeling low. Every day is a new day and no one knows what that will bring. I hope that it brings you all the happiness and hope in the world.

        Thinking of you and your peanut. Keep us posted when you are ready.

      2. Very sorry you hear you are having issues with Mr. Million. It’s the last thing you need. This is the time to be unified and support each other. But I suppose everyone deals with things differently. I hope that you and Peanut are doing well despite this.

  11. Thinking of you and your peanut. I hope that you have received some good news and things are improving with Mr Million.

    Take care.

    1. No, the Mr. Million stuff is well and truly over. He’s done some pretty horrible things in the last 6 weeks. There’s no going back from that.
      But the Peanut is doing well, aside from a bad cold.
      We got our first smiles in the last week or so, which is pretty special.

      1. I’m really sorry to hear that about Mr Million. I’m sorry to hear that Peanut has a cold. It’s that time of the year. I know my kids all have a cough at the moment. Can’t wait for winter to be over. Very exciting to get your first smiles. Enjoy all the firsts. They are so special. Sounds like you are doing a wonderful job and Peanut sounds like she is doing great.

        I hope that you have plenty of other family and friends to support you. Just remember that we are all thinking about you and your Peanut.

        Take care.

  12. I’m so sorry, it’s terrible to have hope taken away like that.

    Maybe a moment like this can help make those good unplanned moments a little more exciting.

    I have recently had a grief experience myself–completely different and much less serious situation, but I can relate to this sequence of feelings so well. No idea how to move past it…lol. But I’m sure you will find a way.

    You are an amazing mother!!!

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