I woke up around 5 am this morning by the sound of my boy. I think I slept maybe an hour or two. My eyes could barely open because they were so swollen by all the crying last night;
I opened my mailbox & there it was; the letter I’ve been awaiting so anxiously, I knew that the Social Board had made their decision & now I was holding it in my hands. Gosh, while holding the letter, I saw a flashback on all my battles & especially the last battle – the battle that lead up to this very letter from the Social Board. It was their decision on the hometraining I’ve been fighting to get for my little son.
I went inside our apartment, I knew that my mom could come home with my boy any minute now (he had spent some hours with my parents) I quickly hid away the letter, I didn’t want to open it until I had put my son down for the night. Maybe inside of myself I knew that it was going to be a negative result. My mom came home with Tobias & they were both happy, I tried to put on a happy face but my heart was racing like a mad horse & I felt sick.
My mom & I talked a little & she drove home. I gave Tobias on his pajamas, brushed his teeth & said out loud our prayers. Tobias was not easy to get to sleep, he rarely is but this time I just really wanted him to sleep because I had this important letter to open. I think Tobias could feel his mom being nervous but he fell asleep. I waited a little more, wanted to make sure he was sleeping well. Then I went out the kitchen & took my little golden cross in my one hand, opened the letter – I felt like a rush came through me; a rush of darkness & emptiness; there it was – the rejection from the Social Board. I slid down on the floor, crying, shaking. My mind, heart & soul felt like one big explosion. I couldn’t breathe & I definitely couldn’t stop crying! I’m still crying on the inside, while I’m writing my son is watching “Happy Feet 2” right beside me, he’s happy & laughing. My eyes are swollen, I’m tired, broke down, defeated & where do I go from here? But at least it gives me the greatest joy in the world to see that smile on my son.
I can’t believe the rejection since doctors have been telling the Social Board that Tobias is being stressed by the kindergarten, the other children & that Tobias needs to come home for a while. But still the system says no, I just don’t get it. No one knows what’s wrong with my son, all the doctors are saying they have no idea what to do now & what to examine Tobias for etc & still the system is saying that they know better?! What’s wrong with our system? I’ve fought many battles before, some lost some won but no matter what all of them made me stronger but how on earth is this lost battle going to make me stronger? I just can’t seem to figure it out, I mean this is my son & his life & his well-being I just lost, how am I going to turn this around?
I do know what my next move is but am pretty sure it’s a lost cause because have already tried that solution but this time I will go down on my begging knees & pour my heart out! Normally I would NEVER do such thing & really didn’t ever think it would come down to this but apparently it has.
I do believe in God & I do know he’s with us all but sorry just can’t agree on this one, I know we all have a master plan & that God is working mysterious ways sometimes but how can one ever justify this? My son is slowly slipping out of my hands. He’s sick & not getting better. If we don’t get help soon I know what the future holds & I DON’T like it! I can’t accept it & how am I ever going to get over this?
The doctors have tried to “prepare” me that if the last blood test he had made comes back positive with FoxG1 gene disorder that I might lose my son because it can be fatal. RETT syndrome is fatal for boys & Foxg1 is similar to RETT syndrome only with FoxG1 there’s no knowledge about it & doctors can’t treat it in any way at all. I’m praying that the test comes back negative.
Time is passing by, my son turned 5 some days ago – he needs help right now. He needs peace but most of all he needs ME! I believe in my son, I believe that together he & I can fight this no matter what but my God, we need peace & space to do so. We need to be at home, training, learning & we need to be happy without anyone trying to tell me what Tobias can’t do. Why can’t anyone focus on what he can do? I dislike negative people but what I hate is people being negative towards my son, not giving him a chance of showing what he CAN do!
My heart is breaking with the thought of what the future holds for my son if we don’t get this hometraining ASAP but who can I go to now? Who can make this happen? Who in this forsaken system believes in the parents rather than teachers who “just” read a book or two? Sorry it’s not that I want to criticize teachers or anything at all but when it comes to our children, a good parent knows their child much better than any teacher on this earth!
It took me some time to write this blog today because have been thinking a lot about everything & nothing. I started this morning & now I just put my son to bed. Today I chose to write one of our biggest TV channels here in Denmark to hear if they dare to publish my story, if they believe that we parents should have a chance to prove that we are the best for our children. Am excited to see if they want to take me into their live studio & let me tell my son’s story, the story about how a system who takes absolute no responsibility, a system which rather wants to hide away our disabled even though we all could truly learn from these unique people! The system in Denmark has “stolen” almost 4 years of my life, first the custody case from hell & now this. When I say they “stole” 4 years from me, I mean that in those 4 years I had to prove myself from A-Z. All the emotions I as a mother went through & am still going through, feeling down, defeated etc. But now enough is enough!!! I’m taking charge, but how? Argh, I just want to go outside to SCREAM, so everybody can hear it!!! But am afraid that nobody will hear it no matter how loud I scream.
I’m attending yet another meeting with our Mayor on April 2. I’m praying that I can somehow turn our Mayor into an actual HUMAN. A human who can think in feelings, life value, respect, accept, love, care etc instead of money & come on it would even be cheaper for him to let me stay at home taking care of my own child. Also the law, I don’t get how we can have a § that says that we are allowed to take care of our sick children at home but gosh, why isn’t that § working then? & who will take the responsibility for when caseworkers, mayors’ etc are not allowing this for me?
I’ve been down the mud many times before but this time around it feels different. It feels even worse than ever. I’ve been crying almost every day/night the last couple of months because this feels like crap. Sorry for my language but I hate when I’m no longer in any control at all or I mean, yes I can handle that life can’t always be controlled & that God has a master plan, but I really would just love it if I at least could control how my son is being handled.
I’ve decided that I will not post anymore blogs before something good happens, am tired of my own negativity & there’s really enough of that in the world; bad energy. But sometimes it must come out. But this will be my last blog until something new happens.
God Bless YOU