As most of you know, my son is suffering from some unknown illness and doctors are/have given up.
The last couple of months have been a nightmare because no matter whom I talked to, they just wouldn’t listen to my frustrations!
Well, I admit – it’s been some very rough years but the last couple of months just somehow ripped me apart.
It feels so hopeless being a single mom to a child who’s suffering from something, obviously, but no one knows what and it seems like all I can do is to simply wait – but how do you just sit back and wait?
It’s my child – a boy who was well, healthy and grew/developed as any other child but all of a sudden he became sick and lost all the skills he’d learned.
A few pictures of my son before he got really sick
Gosh, it was terrible to watch and I couldn’t to a damn thing about it other than to love my new boy and show him that I’m here every day for him!
I’ve been home-training Tobias for a little over a year, and this summer he started school (a special class) and boy, it’s been great!
The teachers there are filled with passion for these children and my son seems like he really likes it there. It’s a new life for us but actually, I fell in a hole when he started school because I was so used to have him home, taking care of him – just him and I in our own little world. I think the biggest challenge for me was and actually it still is, to have someone else taking care of him. It’s so difficult for me to trust others with my boy. I’m really trying to get over that hurdle but it’s hard when I’m used to be the only one taking responsibility for Tobias, but I’m happy I took the decision in the end because it’s been a relief for me. As much as I hate admitting it, I actually needed the free time because it’s quite rough being a single mom to a boy who needs my care 24/7 – I know all kids do but my child needs the same care as a baby!
Anyways, we’ve been to another hospital and the doctor was being very annoying and I think she’d seen Tobias for 5 minutes when she blurted out: I think he’s suffering from infantile autism and I was like “but he’s already been checked for that and his story and the way he got sick doesn’t add up. ” and the doctor agreed.
My sister was with us at the hospital – it’s always nice to have someone with you
No seriously, if you only knew all the diagnoses there have been thrown in my face and every time I came with something, the doctors have been changing their minds – it just seems so super unprofessional to throw around all kinds of diagnoses without checking the patient’s medical journal! But then again, she just told me to wait, and maybe in a few years they’d know what’s wrong with Tobias.
I was so angry that I could cry but I kept my cool, but lost it when I got home. I cried for hours and to be honest, I’ve almost cried every day since.
All the doctors that has seen my son all agree that they think he’s suffering from some kind of an unknown neurometabolic disorder but no clue on what exactly. What scares the living daylights out of me is that a neurometabolic disorder can be fatal if you don’t find the answer to it in time. But, I’m trying really hard to stay positive!
My son has just recently gotten new blood tests taken and all of them were normal – so still nothing for the doctors to work with.
It was a long wait to get those blood tests done because once again the doctors had messed up the information for the lab
I’ve tried screaming at our entire system that I want help from abroad, but they keep making up excuses.
The last doctor I talked to said this: But Maja, we are not sure if your son is suffering from some kind of a syndrome or if it’s a neurometabolic disease so we can’t call for help abroad because we need to know who to contact.
What a lame excuse!
I mean, come on – surely, they could at least send my son’s journal to a hospital in another country! It just seems so unfair that I can read in newspapers about people getting help abroad but my son can’t!
I could contact hospitals and I’ve tried (I’ve called and emailed) but the problem is this; hospitals abroad want our doctor to contact them – and they won’t = frustrating!
My son starts riding physiotherapy next Wednesday and I truly hope he’s going to enjoy it. It’s pretty expensive to attend to and because my son is without a diagnosis, I can’t get any financial help.
I’m pretty excited to start this – unfortunately it means that my son has to take a school day off every Wednesday but that’s the way it is then! I’m afraid of horses but hopefully my son is going to be just as tough as the time he rode on an elephant.
Just as I felt all hope was gone, I got an unexpected email from a journalist telling me, that they’re making this new documentary about unknown illnesses and he’d read about my son because of a this Danish site for rare illnesses where my boy is mentioned, like back in 2012.
I immediately cried when I read the email because could this be our break?
Naturally, I wrote back to the journalist right away and he called me the day after. We talked for a few minutes, and he told me that they had a lot of people to choose from so he’d call me back the week after – so he did. Now they’re coming home to us on Nov 28 to see my son, make a little pre-recording – hopefully they still want to use my son’s story after meeting us. If they decide to go ahead, that will mean that they’ll try to figure out what’s wrong with my boy and they’ll even call expert help from abroad!
This could be our miracle!
I don’t want to get my hopes up but hopefully this can lead to something.
Then I’ve been thinking… but do I really want to know?
What if the diagnosis is fatal or some kind of illness that can’t be cured, then what?
As things are right now, I of course am aware of how sick my son is but at least I don’t know what the future brings – that can both be good and bad?!
Well, I just have to remember that I’m a lion mom and lions don’t give up!
Someday, my son is going to show the world that miracles do still exist!