It’s been quite a long time since I wrote a blog post, so now you’re getting a little update on what’s going on in my life.
Most of you, following this space, know that my son is suffering from an unknown illness and no, I still have no clue on what’s wrong with him. Tobias and I went to a hospital where we talked to doctors about a full genetic test – a test Tobias isn’t getting but the doctor promised me, she would try to think about other genetic tests. I still haven’t heard back from her. I guess my son is just one big mystery to all doctors.
Some time ago, Tobias started having these smaller seizures. We were admitted to the hospital for observation but unfortunately, the doctors couldn’t tell if my son was now suffering from epilepsy and therefore we’re now waiting on being admitted to another hospital…. It’s been almost 6 months, and I still haven’t received the actual appointment.
My son’s seizures became worse and longer… even in school they got worried about this. As if my son hasn’t been through enough already. The seizures were now so intense that whenever they hit my son, he would drop to the floor without warning. Therefore, he was sitting down a lot to prevent him in getting hurt. This wasn’t rally satisfying because my son needs to walk around in order to develop his motor skills.
This week (Tuesday) a teacher called me to let me know that they had called an ambulance to come get my son because he had a very bad seizure, almost 4 minutes long, and it was difficult for the teachers to get my son to react to anything. I was scared out of my mind. My mom picked me up immediately and we drove to the hospital. Thankfully, one of Tobias’ teachers was at the hospital, she was in the ambulance with Tobias, and she stayed with us while we were at the hospital – such a sweet lady! The doctors didn’t do much but at least, they checked that my son was okay.
This experience made me really frustrated, sad and angry because I had nothing on my hands to help Tobias through these seizures.
The day after he had been on the ambulance, his doctor called me and said that Tobias really needed to try some epilepsy medicine because it was getting too dangerous with his seizures and the way he just drops to the floor. I couldn’t agree more and since we still haven’t heard from the other hospital, I didn’t have any other choice. So I picked up the medicine and then went through the day, crying and crying, because I was kind of torn between giving these pills to my boy or not. My logic sense knew that I couldn’t do anything else, but my heart wasn’t agreeing since this kind of medication isn’t without risks at all, but I gave Tobias a pill at night before bedtime. Today, he haven’t had any seizures at all… yay!!! Still not happy about the toxic pills but but but, it’s the only solution for now.
This week, I also took Tobias to this clinic that has a very good reputation in helping people who suffers from all kinds of diseases. I’m not going into details about this since I don’t know much yet… all I know is that it was a great meeting and the doctor was very kind and helpful. He explained many great things about how our brain works, our central nervous system etc. It was good to hear his thoughts on my son. I was very skeptical since I’ve tried so many alternative treatments for my son, and all of this is very expensive and nothing has helped so far. But this doctor was kind enough to give (for free) this energy power bracelet to my son. A bracelet that’s made out of silicone where there are placed as many negative charged ions as possible. These can be discharged and penetrates through your skin. It’s well-known that negative ions can enhance your cell membranes, which will give you a stronger immune system than without the bracelet. I don’t know if this is true, but I’m willing to give it a chance.
On October 2nd, Tobias is getting his first craniosacral therapy session at this clinic and I can’t wait.
This month, Tobias and I were in our local newspaper and it was a great article about my son, his story and his unknown illness, how I cope as a single mom with all the fights against the system, all the hospital visits etc. Many of our neighbors have stopped me and told me how amazing the article was and how in awe they are. All I can say is this; it’s my son, my responsibility and I love every day I get with my little man.
But some very good news about… ME:
September 1st, I started as a student at the university (in a city close to where I live – I have to take the train to get there).
I’m studying a BA in library science and knowledge communication… it’s still very new but I love it. I’m in a great class and the teachers are amazing! It’s a little more difficult to get everyday life to function completely but luckily, I have my mom and she helps me when I have late days at the university and therefore can’t make it home in order to get my son from school. Thanks mom, for all your help and support! I love you!
It feels amazing to be a student, because it gives me something else and I feel like I matter in another way. It’s not to sound negative or anything, but the feeling of talking with other adults about stuff that has nothing to do with my son, is so fulfilling and it gives my life a whole other perspective that I really needed.
It’s now been more than two months since Tobias saw his dad, and not once has my ex mentioned, he misses his son and that he’s sorry for not being there… I’m so disappointed and kind of hurt. I’m not even sure why I’m hurt because it’s not like he’s ever fully been there for Tobias ever since he became sick.
But I will write this; Tobias hasn’t been happier than he is right now. He’s full of smiles, laughter and you know what? He loves to run away as soon as he gets the chance. Is it nerve wrecking when you know your son isn’t the best at walking? Sure is! But I do need to let him run free at times, he needs to see the world without me holding his hand all the time. It’s difficult but my goodness, he’s developed so much the last couple of months. It makes me happier than words can ever describe.
Tobias, my little champ, you’re the best and you keep surprising everyone in your life!
So this was a little update on how things are going in our little household…