I haven’t blogged since last year so thought it was about time.
This Friday, a man and a woman are coming home to Tobias and I.
They have a wheel chair that we have to try to put Tobias in to see if it fits or we need a different one.
I hate the fact that I had to accept getting a wheel chair for my son but his stroller is really too small and since Tobias is still not strong enough to walk that far, we need something so we can get from A to B. Tobias doesn’t use his hands therefore it will only be me controlling the wheel chair. I truly hope they found something suitable and that it isn’t something ancient and heavy!
It’s no secret that I’m totally sad about the wheel chair. Some people told me that it really wasn’t that bad and that I shouldn’t feel bad or sad about it but if you have dedicated your life to helping your son to improve and to get back to life, back to the person he was before this unknown sickness hit him, then it’s kind of a failure that you didn’t reach the goal. My goal was that when Tobias was too big for the stroller, he would be able to walk totally by himself BUT unfortunately we are not there yet and I think it will be some time before we will be able to have that as a victory. But until then, we are still celebrating small victories every day. I couldn’t be more proud of my little champ, my little fighter!
He’s really unique as any other parents thinks about their children. But even though doctors have given up on helping my son, he’s still making little progress every now and then and most importantly; he’s still smiling and his laughter still makes me cry happy tears. His laughter is so warm, it cuts trough any pain I might feel, any sorrow or worry I carry around, his laughter is my cure! His smile is the one thing that can strengthen me and that keeps me going!
About the wheel chair, it’s not that I see it as a wrong thing and it’s not because I don’t accept the fact that my son is very sick still. BUT to me it represents something inside of me that I don’t want to win over me! That is, the fact that I promised everyone including myself and my son that I will never ever give up and I haven’t given up. I see the wheel chair as transportation and that’s all it is. We will still keep going, still try walking longer and longer distances! Nothing can break down my fight as long as Tobias is smiling and is happy.
Some people might call me naïve and that I’m dreaming and should realize that my boy will never be well, he turns 6 this month, he should have been better by now if there was any hope and blah blah blah but do NOT ever take away my hope as a mother! The hope is all I got and it’s my salvation! When I gave birth to Tobias, I fell in love right away and I’m still very much in love with him and love him even more than I thought was ever possible!
I do miss the boy he was before he got sick and I would give anything to hear him call ‘mom’ or for him to play with toys, making trouble at home and so on but the boy he is today, is still my baby boy and the promise I gave to him when he was inside my womb was: I will always love you no matter what. You can never do anything so wrong that my love will stop. No matter what happens, you are my one priority and I will always fight for you, even if you have days where you can’t fight for yourself! That vow is still very much valid and that will never ever change.
Tobias and I sure have been through a lot and I know the fighting and struggles isn’t over but it is what it is and we will conquer!
I still wish that my ex, Tobias’ father, would take much more responsibility and that he would care more but you can’t force anyone to care or to take more responsibility if they don’t want to or don’t know how to. It took me a long time to understand that and for a long time I hated my ex for being the worst father ever but now I know that he’s just not capable. He sees Tobias every other Sunday for some hours but usually he’s always complaining about how sad Tobias has been or how problematic he is and so on. Before it broke me down and I hated him for saying stuff like that! Today I realize that he’s saying these things because he’s blaming himself for not being able to be a better parent. I sometimes wish Tobias didn’t have to come home to his father but the law says otherwise and again, maybe one day my ex wakes up and takes more responsibility and maybe someday he learns that he needs to fulfill Tobias’ needs and not the other way around. One can always hope! I just hope for my ex that, that one day isn’t too late. Only time can tell.
Things are definitely not always going the way I hoped they would but guess I should be used to that by now. After all, this battle with Tobias has been going on for 5 years now. I know doctors have given up and that’s okay. Actually Tobias’ doctor has offered me a diagnosis for Tobias because in Denmark we only get help economically if our children has diagnoses and she told me she could give him ‘mental retardation’ since he is very much behind in development and his motor skills are bad BUT I didn’t take that “offer” because I do NOT want to sell my son cheap. I rather want to suffer a little economically than giving my son a diagnosis that might not be true and a diagnosis just so the system can help me. I want a real diagnosis if we ever get one. I don’t want a cover up. Call me crazy, but that’s the way I am! My son deserves the truth and if he ever gets all well, I will not tell him that I cut him off short just to get money! We will make it and I’m not afraid and to be honest, no matter what diagnosis we might get if ever, I will not let it destroy the hope.
Tobias and I are moving forward. Every day has challenges but we overcome and most importantly, our small home is filled with love and hope and dreams.