Positive medical results bring on such negative thoughts.

/ yaynadja

 

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In the past 2 months, Luca has had the following medical appointments:

Cardiologist- heart is fine

hearing test- ears can hear but he doesn’t react to everyday sounds

Lung X-rays- all good

allergy tests- all good

EEG/brain scan- much improved (brain at level of 10-12 month old)

Luca is doing great. Sitting up on his own now- something I never saw coming. I didn’t have much hope. Luca is doing so great, palliative care have asked to close his file for now.

So, does this mean he’s NOT going to die? Does this mean he DOESNT have a Mitochondrial Disease? Do we have ANY IDEA WHAT HE HAS?! Why?

I know I should be absolutely thrilled at the news that Luca’s results are good. But in reality, I’m absolutely lost. Why? How?! Well, a negative result in anything can give me SOME answers. It could lead to giving him a “label” for the condition he has. I’m pushed further into limboland. I have mentally tried so hard to be strong with prospect of my son dying… and now that he seems to be improving I don’t  know how to be. If he’s not going to die, I must now try and be strong enough to be his full time carer for the rest of his life? Will that be 5,10,50 years? I’ve never felt so weak.

We saw the genetics team last week. Of the 300 genes they did research on (over 12 months) they couldn’t find any defaults. So, now they’ll be looking at about 4000 new genes. If they find a match- they’ll be able to give Luca’s condition a label. If nothing matches then – Limboland.

In the past, muscle biopsies were done to diagnose Mitochondrial Diseases. If we get no answer from the blood/DNA results- then we may have to take this step. It’s invasive and Luca would have to go under general anesthetic. And all for what? Me to get a diagnosis that doesn’t change anything. My mental state needs it. But that’s selfish to put him through that for my sanity.

The biggest haunting fear with Luca doing better, is that I’d be seen as a fraud. If he doesn’t have a Mitochondrial Disease and here I am asking for donations for AMDF on Luca’s behalf. Tugging at friends and families heart strings.

I want to let you guys know that, just like the Drs…. we’re just going along with what we know at the time. And right now, no one knows anything.

My mind is really dark and sad at the moment. I guess sometimes I mourn the son I thought I’d have.
Hoping to twist out of this mess to be strong for my boy that needs me.

 

 

 

 

14 thoughts on “Positive medical results bring on such negative thoughts.”

  1. Oh lovely… can’t even imagine how hard it is. So much confusion but please don’t be hard on yourself about anything. You’re navigating through unknown territory most people can never dream of entering… and you’re doing damn well. Much Lub xx

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  2. You’re not a fraud. You’re a mum doing the best you can with the information available to you at the time. And even if Luca doesn’t have a mito disease, you have done a fantastic thing raising money and awareness for children who have a condition with symptoms so similar to Luca’s. That will never, ever been seen as anything negative. Who knows,maybe in the future you will be able to do the same thing for another disease/illness. Or maybe you won’t and you’ll continue to help the Mito foundation. Either way, sick children and their families are getting support.
    I hope that you get some answers soon. I’m in a limbo land of my own at the moment and the not knowing really does suck (*disclaimer* my limbo land will never be as bad as yours as my current child is healthy and safe but I do understand the aspect of not knowing what your future holds and that is really hard)
    Good luck Nadja. I’m always here following your story and thinking good thoughts for Luca xxx

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  3. There is absolutely nothing wrong with wishing you had a certain diagnosis- How can it be wrong to wish you were able to prepare yourself and your family for the future rather than the uncertainty of this limbo? So what you say is completely understandable. Each time I read about what you are doing for Luca and others, I am amazed- you do a brilliant job. And no one could ever think you are a fraud- whether Luca does or doesn’t have mitochondrial disease, the fact is that it is a truly nasty disease, and you will have helped us to help the people and the families who are affected by it (and raised awareness of a disease most of us have no prior knowledge of) – no one can resent that xx

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  5. You could never ever be seen as a fraud, but a dedicated, loving mother who would give the world to her family. You are the strongest person I know and such an inspiration to us all. We love you and thank you so much for sharing this xx

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  6. Beautiful woman, what a wretched place to find yourself, despite the wonderful news about Luca’s tests. Predictability and some semblance of a plan is sometimes the only thing we can anchor ourselves to, and right now you must feel like you’re swimming furiously in the middle of an unknown ocean. You’re not a fraud, but a passionate and dedicated mama who fiercely loves her bubs and puts herself out there for the good of everyone. I knew nothing of mito before I read your story with a heavy and horrified heart, and am now not only aware, but will donate all I can to help kids with the disease. That’s only a good thing. Much love to you xxx

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    • This comment is perfect. I wanted to say exactly the same thing as Elouise. You are often in our thoughts Nadia and Luca. I love hearing your updates. We miss having you around in the group but completely understand why you’re not. But just know you have a whole lot of support right there should you ever need or want it. Xxx

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    • This comment is perfect. I wanted to say exactly the same thing as Elouise. You are often in our thoughts Nadia and Luca. I love hearing your updates. We miss having you around in the group but completely understand why you’re not. But just know you have a whole lot of support right there should you ever need or want it. Xxx

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      • Thanks so much. I really appreciate all the support I received from the group. While I’ve certainly gotten stronger mentally- it would not be beneficial for me to join the group again. It would keep me mourning for the child I don’t have. When, really I need to focus on the boy I have now. Thank you again. Xo

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  7. Be kind to yourself sweet girl. It’s a rough ride and uncertainty is so tough. I wish it were easier and I wish there were answers, but please know there is a sea of love for you. X

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