It’s no secret that my mood can be a rollercoaster.
I have days where I’m very positive and days where I feel very negative, I hate the bad days but I’m perfectly aware that we all have our ups and downs. But these last couple of days has been tremendously rough for me.
I’ve been crying a lot, especially when my son is sleeping.
Today, I needed to talk to my mom about it because I all of a sudden felt so alone. I’m very thankful to have her in my life because she’s always there for me. So is my dad but I don’t talk with him about stuff like that.
Even though we only talked on the phone, it did help. I love my mom for always taking the time to talk to me even when she has to work very early in the mornings.
Actually, she just said the same things as always when I feel completely lost but for the first time I think I truly listened and took it all in.
I’ve had stress and depression in 2008 and it’s easy to fall into that hole again. Not that I think I will ever be that sad and empty again as back then and also I think there are so many factors to why I have these periods in my life.
Truth is, I feel alone, completely alone. How can I feel alone when I have a beautiful son, a Bestie and my family who’s always there to support me? Well, I know why.
I’m home training Tobias and have been for a little over a year plus Tobias’ ‘dad’ only takes Tobias ever other Sunday for a couple of hours so it doesn’t give me much spare time to just “be me” instead of only being the home trainer/mom of my son.
I will never regret that I chose to do this for Tobias, for the both of us. It has been an amazing journey and it has changed something inside of Tobias. But I do miss my social life, seeing other people, talking about other stuff than my son. I realize it’s me who’s talking about Tobias all the time and he never leaves my thoughts. Everything around Tobias, I do alone. I take all decisions regarding him, all the meetings with doctors and other specialists, hospital visits and now the school visits as well. Again, please don’t think I’m complaining because this is my life and I’ve been living it for years like this since Tobias’ ‘dad’ never took responsibility.
Today I did something that I swore I would never do but I wrote a text to my ex about the medication Tobias is getting.
Because it’s so expensive and I’m without clue on how I keep paying for it right now but to no surprise my ex reaction as only: “wow is it that expensive?”
Hmm, what did I really count on? Nothing!
I know I’ll always find a way to pay for it and my parents are ready to help if we don’t get a grant soon for the medication.
Do you know the feeling of looking at yourself in the mirror and you have no idea on who the person in front of you is? That’s how I feel right now. Or no not completely because looking at myself, I see a loving mom who will fight for her kid any day! But I look tired, exhausted and I miss the sparkle in my eyes.
I miss me!
I hope I don’t sound selfish but just for one day, I would love to throw away all worries and just live.
I know that’s not doable because being a mom is a 24/7 ‘job’ and would never be without it!
Today I’ve spent most of the day thinking about what it is that makes me so sad all the time.
Is it the fact that my son is 6 years old and still, no one knows what’s wrong with him or how we can get him better?
Is it because I’m feeling lonely? (lost a lot of friends when I left my ex)
Do I miss having a boyfriend, someone to take care of ME?
An hour ago, I made a cup of coffee and looked at the pictures of my son. I’ve looked at them a million times before, always brings tears to my eyes. These pictures shows a happy and healthy little boy, who’s playing with toys, looking proud because he stole a juice, playing at the play ground, eating by himself etc. Then it hit me; I miss him!
Gosh, I hate writing this but dammit I miss my ‘old’ boy so much!
For the longest time I’ve been fighting to get my boy well. But now I see I’ve been fighting to get the ‘old’ Tobias back. I know some would say: but isn’t that the same? No, it’s not! I don’t think I ever said proper goodbye to my ‘old’ boy.
Why am I trying so damn hard to get my beautiful Tobias to be like that? No matter how I put it, he’ll never be one or two years old again. He’s now 6 and if he gets well, he will still be a new him. It may sound confusing but to me it all makes sense. I’m trying to hard! I need to stop all this trying and just enjoy the present. Enjoy my son and the journey we are on. He might never get well, that breaks my heart into tiny bits and I’m not sure how I will ever deal if a doctor finds a diagnosis that leaves no room for cure or improvement. But for now, I need to accept the fact that my son isn’t who he was and he’ll never be that boy again! And it’s perfectly okay.
Obviously, if I had the choice, he would never have been sick to begin with! No parents want that for their children. We all know this!
But it’s perfectly okay because I have no choice. I need to let go of the control, the past and everything else. All I need is the present!
I know this is easier said than done because we have a long way ahead of us, there are still so many unanswered questions and I’m sure we will meet new obstacles and so forth. But yesterday is a closed chapter and tomorrow is a fresh start! I want to cure my son but not to get him back but to say hello to a boy who’s conquering the world by simply being him!
Each day I’m training Tobias in using his hands, we’re not getting anywhere as it is right now. He only uses his hands for stereotype movements. I guess what’s been frustrating me the most is, that there was a day when he could use his hands for everything. It’s about time, I clean the slate. I don’t need to think about what he could do but I need to think about what he can do. Maybe that will move mountains.
My love for Tobias is limitless and no matter what the future has in store for us, we’ll make it. I loved the boy I gave birth to, he gave me life! I love the boy who’s now sick but full of potential and that’s what keeps me going: potential!
Tobias is still the boy I gave birth to but what I mean is, he did change and I know kids changes and we can never know how things will turn out but having a healthy boy and seeing that healthy developing boy fade more and more away, is devastating and it takes time to adjust.
I don’t know if I would have felt any differently if he was born this way? None of it matters because being a mom is a blessing!
The other day I posted a status on Facebook how expensive the medication for Tobias is and someone commented that it was ridiculous and the system should think about how much they save since most parents would have placed their ‘handicapped’ child in care.
Sadly enough in Denmark, I know that many would have done just that and it saddens me. I’m not judging the parents choosing this option at all but it saddens me that society doesn’t do more for families with children in much need of help! I know how alone I’ve been and maybe it’s lucky that I’m at least still standing, I don’t know. Anyways, I would never EVER place my son in care! I will always find a solution to care for him alone.
If I had the extra energy I would do anything in my power to make the world a much better place for all children in need of help. But for now, I’m concentrating on my own little world.