The last couple of days have been tough. Really don’t know how to explain it or how to even write down the right words to how I’m feeling these days. I’ve said for the longest time that my life is like a rollercoaster but I think I just realized that I’m the rollercoaster. My mood can go from super happy to super depressed in 1 sec. Hate feeling like this.
Monday 16th July I attended a meeting at the hospital with my son’s doctor. We needed to clean the air & talk about what to do & what not do to. She asked my how I was feeling & I just answered the same as always; I’m doing fine, I just really want my son to be fine & find out what’s wrong with him. I only lied a little because OF COURSE I want to find out what’s wrong with my precious boy but I am anything but fine. I cry everyday & can’t sleep at night; I’m filled with worries & have nightmares. I have migraines several times a week. I’m just not in any balance at all.
She (the doctor) said the same thing as always; we don’t know what’s wrong with Tobias, we have no clue on what to do now, you might never get any diagnosis, maybe he will die a very young age & blah blah blah. I’ve heard it all before & of course it makes me sad every time but all the other times I gave myself comfort by saying; No my son will make it, he’s a fighter (& I know he is!!!) we will find a way, God is a good God & blah blah blah but this time I can’t shake it off me no matter how hard I try. Maybe all of the sudden it has occurred to me that maybe my son will never be well, I mean I love my boy as he is, he’s so cute, charming etc. But what if he will die from this? Gosh, never ever dared to ask myself this because it was NEVER an option but all of the sudden my heart is aching from this question; What if he doesn’t make it? I hate hate hate myself for even allowing this feeling, this thought to be stuck in my mind. I am the one who should fight for my son at any given time, I am NOT allowed to give up or sink into this old tune; what if?
I need to be strong for my son! The truth is, right now I’m anything but strong. I might sound like I could rule the world but no, need to be honest – I am breaking down. I need to change this mind of mine ASAP.
Two days ago my mom had spent the day with Tobias, she came home with him & we talked in the kitchen & my mom was talking about her fears etc regarding Tobias – I almost dropped down to my knees crying out loud, I wanted my mom to shut up, I wanted her to understand that she is not helping me at all by saying all these negative things. My mom held me tight & she was crying too. We cried for 15 minutes or so. My mom said goodbye to Tobias & left. At night I was thinking to myself; when I was a kid & scared of something, my mom could ALWAYS take away the fear & comfort me but all of the sudden, she can no longer take away my worries – then what? Who can take away my fears? It scares me so much. It actually opened my eyes a little, am not sure if it’s in the good way or anything but maybe it’s time to be realistic? But being realistic about Tobias, have I not been that all of the time? I know it may not make any sense to you.
My ex (Tobias’ dad) has completely given up on Tobias. My ex has told me for the longest time that I should be realistic & realize that Tobias is very sick, he will never be okay etc but every time I told him to stop being so pessimistic! I do think & always will think that he was way too pessimistic – what a coward!
But am I being too much of an optimist? I do believe that any parent should always fight for their children no matter what! & I will never give up on my son but on the other hand it has occurred to me that if not a miracle is soon to happen, then what?
Right now; Tobias can barely walk, he’s totally stiff in his movements, he just wanna lie in my bed all day, he can’t eat by himself, drink by himself, he still wears a diaper, he has no language, no sign language, can’t or won’t use his hands for anything, he doesn’t play, his temper is HUGE, he can’t get in a chair by himself – I think you get the picture, he’s like a baby but in a 5,5 year old body. I don’t wanna sound pessimistic but gosh right now time scares me!
All these negative thoughts keep wandering around in my mind & I don’t wanna be this person – I wanna be the happy mom with a happy face.
The doctors have for the longest time told me that Tobias is maybe not going to make it, he will never improve & I should think about other options than having him home or at least think about getting a relief family so I could relax etc. I always said NO I don’t need that but gosh what if I ever get that need? Would it happen, a mom not even being able to take care of her own son? What kind of a mother would I be? I would never forgive myself! Actually I feel like I should be yelled at for even writing this blog! But need to vent & I truly hope this will change my mood around because I don’t wanna cry every night. I’ve reached the point where people can almost not even ask me; how’s Tobias? Without me getting all teary eyed. It doesn’t feel good at all.
I know this; let go & let God but right now I do believe & feel that He should show himself in our life RIGHT NOW because time is running out – they all say that He will show up when we expect it the least but how can I not expect Him to show when we need Him to do so right now? What if I let go & time runs out? Will He then show & in what way?
People complain about when their children gets the flu or they are making trouble at home etc & I know that for those families these things can be “huge” problems but I would be so thankful if my son made some trouble at home & come on a flu will go away again! Tobias has no language but right now he could curse whatever he feels like, it would just make me happy!
I do think I’ve been realistic throughout everything we’ve been through & I have realized a long time ago that my son is very sick in some (unknown) way, but am I being realistic or pessimistic with my thoughts these days, can’t make up my mind. All I know is this; I love my son endlessly & I will never let him go! He’s my everything & without him, who am I?