Before you read any further, just know that this blog post is really not me, trying to offend anyone.
Maybe I just need to write this, because I’ve been extremely stressed with exams. My son has been struggling a lot with stomach problems, which means sleep is something we haven’t had a lot of. I just had a water damage that destroyed my kitchen (all fixed now but it was a pain). I feel lonely at times. I know what my dream is, but it’s far, far away. I’m tired of not having a diagnosis for my son. I’m super annoyed that my son’s dad really isn’t asking for Tobias at all (not that I’m surprised but still, it hurts).
Maybe I just need to vent, to rage out, to scream, to ask the world “Where’s the love? Where’s the compassion?”.
Well last year, our local newspaper wrote an article about my son and his unknown illness. I was truly happy when the journalist asked me, if she could bring that article because she wanted to help my son. I’ve received sweet compliments when I met people, who’d read the article. Some people contacted me asking if my son didn’t have RETT syndrome, which he doesn’t. But other than that, nothing has really happened.
Until today… The article was in the newspaper around September last year and this month, the photographer, who took the pictures of my son and me, wrote a little piece about people, who had made the biggest impression in 2014, and he’d picked a photo of my son and me. (I’m so moved and thankful for this!). And the photographer wrote a short summery about my son. It lead to a woman who contacted the newspaper, asking them to give her contact info to me because she thought she could help my son. This is kind and I was very excited but then it hit me; this is going to be something very expensive (as all ‘alternative’ treatments are). But, I called her, because what if she’d read the article and felt a need to help my boy and maybe even for free?
Stupid and naïve me!
I called this woman and she was very sweet. She told about herself, what she did and how she felt compassion for my boy and she really wanted to help him. To put it short; this woman helps people with motor skill problems etc. I listened and we talked really well together. But, and there is a but, there always is… this treatment is, in fact way, too pricey for a single mom who’s studying.
I’m sorry if this sounds ungrateful or mean in any way. But if you read an article and feel like you want to and actually CAN help a child, you even ask someone to give your contact info to the mother but you want a lot of money for it?! I just don’t get it. If you think you are that good, if you think you can help improving another human being, then show it! Do it for free or at least come with a discount!
When you are a parent, you’ll do anything for your child. There’s not a bridge you won’t cross just to make sure that your child is getting the best in life, that your child knows that your love is endless. If you’re a parent to a ‘special need’ child, you’ll do exactly the same as the above. Only, you’re more desperate! You want to roar to the world for help. If you’re a parent to a ‘special need’ child without a diagnosis, you’ll do exactly the same as above. ONLY, you’re adding endless nights of no sleep because you’re searching the internet for information, hints or doctors who might be able to help. Believe me, I know – I am that parent!
So it’s quite obvious that being a parent to a child who’s suffering from an unknown illness, that you’re willing to pay anything if there’s a little hope that you found the miracle you need.
Oh yes, some might say; but why don’t you just accept your child the way he/she is? I do accept my child, I love my child and I am fucking proud of my boy! BUT, I do NOT accept that we live in a world where everything costs a million! I do NOT love when people try to make money on other people and their despair. I am NOT fucking proud of the system when it fails to help people in need (this applies for all systems who don’t help people who need it – not just my son… I am talking around the globe!).
I get that people (including me) need money. That’s why we work! Yes, I get that.
But why and how do we choose our career path? Do we choose it because that’s where our passion lies? Do we choose it because it’s been the same in the family for generations? Do we simply choose knowing it will give us a lot of money?
Did we pick it because it was where our true passion was and then realized that we can actually make a fortune on it? Can it be combined; money and passion?
It is super easy to make money by helping a desperate parent, I’m being honest about it. Believe me, I’ve spent a lot of money on all kinds of different ‘alternative’ treatments, diets, tests and blah blah blah.
I’m not gonna lie, there is, in fact, people out there, who just want to help. Again, Micheal, I’ll never forget what you tried to do for my son – I just wish we didn’t live that far away because then maybe the result would have been different.
Sadly, it is extremely rare, almost as rare as winning the lottery, that people who claim they can help your child with the unknown illness, that these people help you for free. No, they require a lot of money. I get it, you need your salary as well. Sure you do! But why ask someone to contact you because you want to help, when you want full price?
I want to help my son, I really do! Make no mistake of that! But I am tired… tired of spending way too much money (even my parents spend a lot of money) on alternative treatments. Every time someone says “Oh, I can help your son. It sounds like something I heard before, seen…” and blah blah blah… “and the price is… “and your almost dropping your jaw!
Acceptance… what is that?
Is it accepting my son the way he is? YES, I do accept him the way he is. He’s mine and I’ll love him endlessly.
Is it accepting an unknown illness? Well, I do accept that my son is sick – I can’t really run from that – but I do not accept not knowing what happened. Why did he lose the ability to talk? Why did he lose the ability to eat and drink by himself? Why did he start having stereotypical movements with his hands? Why did he start walking on tip toes? Why did he lose interest in his surroundings and the people in his life? I could go on but it’s just too sad.
To be honest; things are improving. I don’t know why. Is it because my son is surrounded by amazing teachers, who really fight for him and most importantly, they believe in him. Is it because he no longer sees his incompetent dad (yeah, I did write that… sue me!)?
Maybe this blog post doesn’t make any sense at all. Maybe I just needed things off my chest. I don’t know. I was just very frustrated with that phone call today. It made me sad. Not only because I, once again, realized that the world is not full of people burning with passion to help others, but also because I know, I don’t have that kind of money. Every time I hear about a treatment and it sounds like it could, maybe not cure, but improve my son’s condition, I become super excited and then it hits me; this treatment is as expensive as all the others and I can’t afford it. Can we live without this treatment? What if my lack of money is the reason why my son won’t recover?
Enough is enough! I am, in fact, doing all that I can to help my son. I need to tell myself that it is okay. I don’t have to spend that money. My son is improving, slowly but it’s happening.
Well to be honest, of course I was happy to talk to the woman and it is somewhat sweet of her wanting to help… I am sorry, I just can’t afford it.
When you are a parent to a child with special needs, you want to do every possible thing to help improve your child. Not because your child isn’t good enough. Maybe it is because you (I) have no clue on what’s going on in your (my) child’s mind. Is he okay? Is all the movements he’s doing with his body, stressing him? You want to help and support because you want your child to know that he/she is capable of anything!
I tell my son every day that I love him, that I am proud of him. Even if we’ve been at the grocery store and he threw a complete tantrum, I still tell him that I am proud. Some would say; but why compliment for tantrums? Because he walked on his own two feet. Something he wouldn’t do a year ago. You see, your child is capable of anything. YOU (parent) are capable of anything! Trust yourself, your gut and know this; the love you and your child share, it’s free. The smiles and the laughter you share, is free. Sure, a smile doesn’t cure everything but it sure as hell throws away your worries… maybe just for awhile but it still counts.
Acceptance combined with patience… that’s my new ‘live by rule’.
Stay true to yourself, believe in yourself, believe in your child. Most importantly, remember that money cannot buy you everything.