This was the email I had waited so long for, the email I was really thinking would only be positive or at least be with info on how to come further in finding out what’s wrong with my boy but no the title of this blog is the last email I got from the American doctor; the American doctor who has a huge knowledge in neuro-metabolic diseases. This doctor gave me a feeling of safety, a feeling like “Okay, he will be the one who can help my boy” but no, he was not our miracle. Gosh where to go from here?
My heart is broken because seriously I have no clue on what to do now, who to seek, who to ask for help etc – should one make a video about my son & just spread it out to the entire world to see? Maybe then someone sees it & has idea on how to get a diagnosis for my boy & how to help him, if he can be helped?!
It scares me so much that after 3,5 years of visiting hospitals, trying alternative treatments, medical treatments, zone therapists, psychologists, writing with doctors from all over the globe, using hours on the internet trying to find a community where I could share my story & people could recognize it etc but still no luck. I am so very exhausted but guess all I can do now is pray to God that he will give me an answer some day. I need answers, I need peace & right now I am filled with despair, sorrow, worries, panic etc can’t even write how I feel right now.
I know you can tell me that God has a master plan for all of us, He is a good God etc & yes I know that – but as a mother to a very sick child, this doesn’t give much comfort at all.
Just recently Tobias has started falling a lot, it’s like he can’t keep his balance at all & guess it doesn’t help that he’s toe-walking all the time. I’ve tried training with him but it doesn’t work. Maybe it doesn’t work because it’s not supposed to help?
How am I supposed to help my son when I have no clue on what’s wrong with him? I know that I am providing him with all the basic needs & he gets so much love all day long but really I just don’t feel like that is enough at all.
Right now, I feel empty for ideas – I really don’t know what to do, how to feel, how to react, what to say at all because it all has been said before – I feel like I’ve put myself on repeat & am sick of hearing it over & over again.
All I can do now, is to give my son the best life he can have, make sure that he never is without anything & then pray to God & hopefully some day He hear my prayers & answers them as well!