It’s no secret that I’m seeking a diagnosis for my little son who turns 5 in March.
Today his doctor at the hospital called me & told me that they have great suspicion that my boy has the severe & very rare FoxG1 Gene disorder, it’s similar to RETT Syndrome. The doctor also told me that they have no idea where to send the blood tests that they have to take from Tobias & when they will have the answer, really wish she didn’t tell me their suspect until she at least know where to send the blood tests because now I’m more worried than ever because FoxG1 is so unknown & our doctor told me that if Tobias has this illness they don’t know how to help us anymore. Gosh, really this breaks my heart if my heart could even break more than it already has. I’m devastated!
FoxG1 is in the same category as RETT syndrome, it’s like in the same “family” & with RETT syndrome it’s normally girls who get diagnosed & if boys get that diagnosis they are rarely to make it. But with FoxG1 the doctors don’t know the outcome. I’ve tried to find something on this illness but the information about it is small. But okay in a “wierd” way that gives me great comfort, I mean when nobody knows the outcome of an illness that leaves room for positive thinking in the way that then maybe if Tobias has this, he can become the example of how to live with this & hey miracles do happen so maybe my son will be well again or at least not be any worse than he is at the moment.
Also I read on a site that doctors, experts etc are working on a way to “cure” RETT syndrome, yet I know FoxG1 is an illness for itself but it’s also a genetic error so maybe the cure would be the same if a cure ever comes. Keep praying!
Tobias is cleared to NOT have the RETT syndrome but the doctors was actually very surprised that he didn’t have RETT syndrome because apparently he has all the signs & with FoxG1 it’s apparently the same signs/symptoms as with RETT syndrome.
I truly do want a diagnosis for my son but then I never thought we could risk getting this diagnosis but then again the doctors have been so totally wrong all the other times but then why am I this scared now? I have been chasing a diagnosis for almost 4 years but really just didn’t think it could be something this rare, fatal, severe etc. But am praying to God & He will show us the right path some day!
Right now I’m still fighting to get that home training for my boy because he doesn’t thrive in the special kindergarten he’s in & that’s the only offer we get in our town & I just know in my heart that home training will get my son a long way & will get him better & he needs to be close to me, his mom, all day. He screams when he has to leave for kindergarten EVERY morning & my God I could write a whole book about how bad this kindergarten is.
I attended a meeting with our Mayor the other day & he promised me that he would do whatever he could to get me that home training & that he felt so sorry for all the problems I’ve had with caseworkers, psychologists, the state administration, the kindergarten etc but now, he claims that he never said that so here we go again! I’m so sickening tired of our system & the way it treats families with “special children”. Come on, I’ve been fighting the system for 4 years now! First I started out with the custody case against my ex (Tobias’ father) it took 3 years & I lost but some time ago my ex told me that he did no longer want his son home other than for 3 hours every second week & not even this settlement he keeps. Such a moron, the weakest person I’ve ever met in my life.
4 years ago we started seeking for a diagnosis for my son. I’m TIRED but ever going & will NEVER give up.
Now I need to find a lawyer who can help me fight even harder against the system so my son can stay home all day without having to go to that stupid kindergarten & get the right, loving & caring help he needs.
I’ve been thinking about writing a book about the last 4 years – but it’s so hard to get started because there has been so much happening & my mind is still chaotic. I really need peace. I’m sorry if I sound like a total weak person, wanting pity etc – that’s really not my intention but am a single mom & every day I have to put on my happy face because I don’t want to show my son that I’m breaking down. The sad thing is that I know he can feel it because kids just can!
“What doesn’t kill you only makes you stronger” – can’t wait for feeling stronger because right now I feel the weakest person to walk this planet. But even if I have to crawl to finish line I will, I can win this for my son!
Brian Littrell (from the Backstreet Boys) sings: “Why be alive if you don’t follow your every dream” – He’s so right, my son has no language but I will teach him that we need to follow our dreams in life to be alive. Brian Littrell is my inspiration in life & if you don’t have his record: “Welcome Home” you need to buy it ASAP! That record saved my Faith & every time I feel down or my son throws a tantrum I put on this record, the only thing that actually works on Tobias’ tantrums, if he’s sad, needs to sleep etc. Okay now I even made some commercial in my blog LOL
But what I “hate” the most about life right now is that my mood/mind is like a rollercoaster, one minute I’m super happy about everything & feel like anything can come my way & then a minute later I’m totally down, feeling sad & feeling like I’m just not enough.
In my heart I know I’m doing right & that this too shall pass – just have to wait it out but while fighting the best I’ve ever learned.
My little angel is sleeping right now, can hear him snore – love that sound.