It has been a rough week – a week where my son has been crazy angry every day with only a few laughs & smiles. It’s no fun at all seeing him like that.
I’m keeping faith & I know our miracle is awaiting us but gosh I need a little break or just a tiny miracle to happen soon because time scares me so much right now.
I ‘m taking Tobias to the biggest hospital we have here in Denmark on November 6 (it’s really our last chance for any help in our own country) I really pray that this doctor can see what could be wrong with Tobias or at least that she will make sure to contact as many doctors around the world so my little man can get the right help.
I ‘m hometraining my son but unfortunately the training of his motor skills are not going as great as I had hoped & last week a physiotherapist came home to us to see if she could do anything or give me advices etc but nope she only told me that I was being a strong mom with loads of love to my son, hmm yeah well tell me something that I didn’t know – of course I love my son endlessly but really had hoped she could bring something to the table. But once again I’m left alone in our society to take care of my son with no help what so ever.
I can feel the anger & the frustrations etc build up inside of me. Luckily some days I can push those feeling aside but this week has been a true nightmare so hopefully next week brings something great our way.
Tobias turns 6 in March next year & he’s getting bigger & bigger (thank God) but gosh am beginning to think what I will do if something doesn’t happen soon with his motor skills, do I then need to decorate my entire home with handicap friendly stuff etc? I just don’t wanna do that. Some people would call me crazy for not having any equipment at home to ease my everyday life but if I start getting that, I feel like I’m giving up as crazy as it may sound but I ‘m just not ready mentally to go there but am starting to feel exhausted in my body for carrying my son this much around at home, holding him when I have to bath him, carrying him to a chair & down again (multiple times a day) carrying him when he’s sad, lifting him up in his stroller, taking him down the stairs etc I hope it doesn’t sound pathetic but really he’s not that small anymore.
I tried training Tobias to sit on the toilet but okay maybe he’s not there yet because he panics every time I sit him on his toilet seat & screams. But am still trying when he’s in a happy mood because really would love if he could be diaper-free, that would at least take away some of the carrying/lifting throughout the days.
Well, I don’t wanna dwell in all the negative things because am also very thankful for our lives & thankful that my son is still alive. He is my blessing & my God, he has taught me so many things, & in fact he taught me how to be stronger. Guess that’s really needed, though.
He’s my little champ & I know he will write history some day! Maybe he won’t be able to write it himself but I for sure will do so!
I’ve decided to start writing a book about my son, maybe this book will never ever be published but maybe someday it will & maybe it can be a huge help to any other parents facing the problems I have faced & am still facing. I know I will at least try to see if it’s possible & if not, then I have a book with our history in & that’s a good thing as well.
Before I started writing today’s blog, I put Tobias to bed & after saying a prayer out loud he gave me a little smile & my God, a tiny smile from him makes everything okay! His smile brightens my entire life no matter how many struggles I face, his smile reminds me of just staying strong & in faith!