I wanted to write about our trip to the hospital in Copenhagen but to be honest; I needed some time to “digest” this hospital visit, the meeting with the doctor.
Tobias had never been to this hospital before. It’s the biggest hospital in Denmark.
As we got seated in the train on our way to the hospital I remembered how some time ago I sat at the hospital we have been to so many times before & thought: Oh well at least they haven’t sent us to “Riget” (the hospital in Copenhagen) so guess it can’t be that bad with my son & now all of the sudden I find myself on the way in the train to this hospital, my sister was with me & of course Tobias.
Tobias was amazing & so happy in the train, it was a long train ride (2 hours) & then we had to change train at Copenhagen main station to Nørreport & then take the bus to the hospital so a long trip but Tobias was being a true champ & didn’t mind the trip or the fact that everywhere we went it was crowded.
It’s no secret that I have been scared out of my mind with the meeting with this hospital & all of the sudden standing outside this giant hospital I felt sick. I just knew I would get some news I didn’t want.
We had to wait about half an hour before this sweet lady (the doctor) came towards us, reached for my hand & said out my son’s name (I guess she could she my fear & maybe it was obvious that I was the mom of Tobias) – my stomach turned; what would she say? We entered a small office filled with toys – the sun was shining & the room was too hot.
This doctor is the head doctor of the department for very rare handicaps. She started talking & my sister was being a sweetheart & took care of Tobias & made sure he was happy & she succeeded.
All of the sudden the doctor started talking about RETT syndrome (Tobias had been cleared of that surely but NO there are still some kinds of RETT’s they haven’t cleared him for (big surprise for me since our doctor at home promised me that they had cleared him for any kinds of RETT) – Normally it’s girls being diagnosed with RETT syndrome but boys can get it too. If you don’t know what RETT is Google it & you will be shocked! But then she took the stethoscope & gave Tobias an exam at his stomach, lungs & heart & then she looked at me; my heart was in my throat & she said; I am very concerned about Tobias’ heart, it’s raging & the way his stomach is filled with air, his lungs sound a little odd too in his breathing (She is right, Tobias has a weird way of breathing, sometimes he holds his breath for A LONG time & other times he is hyperventilating). The doctor continues “I am afraid & worried that Tobias might be suffering from a autonomic nervous system disease (WHAT!!!! But really had mentioned these “symptoms” for the other doctor at the other hospital many times before, but no reaction & now this doctor says these things…..) My head started spinning around, I looked at my beautiful son who was smiling & laughing with his aunt then looked back at the doctor. My inner control freak screamed “What’s the future if he suffers from this?” but the fragile mom in me wanted to run, or at least just to shut up, I didn’t want to know anything right now. But of course my inner control freak won AGAIN & I asked with a steady voice “What will the future look like then?” – the doctor looked at me, trying to smile but then the words came out “If Tobias suffers from the autonomic nervous system disease the future is not bright BUT I don’t want to say too much now but he has all the symptoms & this disease CANNOT be cured…. The autonomic nervous system controls our lungs, heartbeat, organs etc it’s the system that controls the things inside our body that we can’t control ourselves, the things that just happens automatically” – I wanted to scream, I wanted to cry, I wanted to run, I wanted to yell at the doctor but I just put on my control freak FAKE face & nodded as if I was okay with these disturbing news but I was anything but, I was shattered into pieces.
My worst nightmare, the worst diagnosis can be right there in front of us & I hate this!
But no matter how terrible this visit was I have to say that this doctor has been the most honest one of them all (& believe me, I’ve met quite a few) & also she agreed on making some tests of Tobias that I have been wanting for a long time. Tobias has to get a complete heart, lungs, stomach examination. A MR scan of his entire back/spinal cord, a PET scan of his brain, blood tests etc .
Tobias was a champ the entire way home but of course tired but at least he was smiling. I tried to be happy on the way home, took care of Tobias & smiled & hugged him, told him what a champ he was/is, how proud he always makes me etc & Tobias smiled. But inside I was screaming & crying. I just wanted to break down but as always kept my fake smile on, talked with my sister about how I will fight no matter what diagnosis (I wasn’t lying, because will never give up!!!) but I just wanted to say: I am devastated, I don’t know how long I last, I am tired, I am fighting on my own & blah blah blah but I didn’t.
I’m still trying to cope with the possibility of this fatal diagnosis; I am praying to God that we won’t get the diagnosis because how on earth am I going to handle that? Tobias is my everything, I can’t lose him!!!
I want to be strong, I want to fight no matter what, I AM aware that we are all on loan on this earth, I AM aware that I need to change my own mood, spirit etc but RIGHT NOW I am just sad, broken, worried & that is the truth. I am not going to lie, I am not going to say I feel happy etc because I don’t!
YES I am happy to be breathing, I AM blessed to have my precious son, life is a gift but sometimes life gives too many obstacles & too many worries – my opinion.
I am praying to God, He is the only one who knows what will happen, what the Master Plan is.
But until I get any answers, I will fight! Maybe God has another plan for my son than I do – but until then I am finding the path we need to be on according to my heart. My heart tells me that I need to continue what I do; I need to fight no matter what diagnosis comes. It is my duty, It is my mission in life, it is MY son!
But right now, my world (my inside world, my thoughts, my heart & soul) feels shattered, I know I will rise again but right now in the present my shattered me is crying