The surgery

It has been awhile.

Coming back to Hamburg again after holidays was really hard on me. Not because of the “I am foreigner ” thing but because I knew we had some major events waiting for us.

One of them was Gabi’s PEG surgery.

I know it is just a surgery, that it is simple procedure but, for me, it is everything but simple.

I know this is the one more thing that this stupid Batten disease took away from my daughter.

It is one more lost battle and getting closer to lose a war.

On days like that, I just can’t stay positive. Nothing makes sense anymore and I just want to disappear. Then I usually disappear. Emotionally. I just shut down, from friends, from family, from social networks, etc. I need period of my time to touch the bottom and rise up again. Every time, every loss, every function and counting.

Well she had a surgery. Firstly everything went well but the second we started with feeding, she had enormous pain. She was vomiting and even stopped breathing from the pain. It  was the hardest thing for me. I just can’t stand seeing her in pain. She didn’t deserve any of this.

We somehow managed through that first and second day, even though I had little break down on the second day evening because she was without liquids for whole day because of the mistake one nurse made and I was trying to explain that to the other stuff there on English and they didn’t understand me so I was freaking out. It is so damn hard when you are in hospital and you don’t know the language.

My beautiful child held my hand and cuddle me while I was crying because of her. Don’t even know what to think about that.

Update:

I was starting to write this post and then stopped. She had another surgery last week and now we are in recovery phase. She is not the same. Every single thing has effect on her. So we shall see what future brigns

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Grand mal

After all this years dealing with Gabi’s epilepsy and various types of seizures she is having daily, I’ve always felt lucky because she never had grand mal.

I have only saw it on TV and Internet,I’ve read about it, I’ve thought about it and deep in my heart I was hoping that I would never see it.

But…. this stupid disease has no mercy. Not a bit. Second day on our holiday vacation, at 5 am Gabi had first grand mal.

She was shaking in her bed, rolled her eyes, drooling, looking like she was dying.

I saw so many seizures in our epilepsy journey but this was something that left me paralyzed. I was watching her so helpless few seconds. It was only few seconds when I was standing next to her and my mind was full of all the scary thoughts. Is she is dying? Is this disease progression? Will she ever recover? Is her brain more damage? What if this won’t stop? Is this the moment when I need to say goodbye?

It took only few seconds until I rushed to find emergency medicine and give it to her and seizure stopped immediately.

We were “lucky”.

But as everything in this disease, nothing happens without major consequences. Since that grand mal she is very poorly. She can’t hold her head, she is tired but can’t sleep, she can’t eat or drink normally.

I am trying to act normal, trying to enjoy holidays because of my son, but deep inside I am trying to pick up the pieces like a numerous times before. Trying to put this in our new normality and say goodbye to life before. It is always so hard, but in this disease you have to do that thousands of times until the last one.

So, we are “enjoying” our holidays. Gabi is relaxed in her pushchair, enjoying the heat mixed with summer wind. Vigo is playing and screaming, just like every other toddler and I am writing this post, looking at my bag where I keep emergency meds, thinking when it will be that I will need it again.

Solo trip with kids

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I did it. First of all, look at this picture. This are the stuff for me, my 2y son and 7y daughter for three weeks.

I know, I can’t believe it is possible also, but I did it.

Yesterday I traveled with my two kids alone to Croatia. We traveled by plain because it is faster and easier for us. I couldn’t take many bags with me because I was alone and pushing two buggies and one bag, while being 5 months pregnant, was already too much. So I did it. I packed everything in one bag. Luckily it is summer and we will spend most time on the beach wearing beach clothes, made everything easier but still… while I was living in Croatia and first beach was only 2 hours drive away, I would bring as much as it could fit in my car and since I’ve gave birth to my first, I’ve always drove minivans. Gabi’s first summer, my car was full and I mean full to the top. She was still baby, so I’ve took  two pushchairs, one for beach and one for city walks, I’ve took feeding chair, chair for playing, mini bike, etc. Talking about craziness.

Next year the same. She had two bycicls in the car,one baby skate, lots of beach equipment and also pushchair in case she gets tired.

It was happening every year.

When my son was born, it was same, just little less stuff for both of them because we needed to share space. When Gabi stopped walking, we had two buggies in that car so we had a little less space again.

And this year, when I need to travel thousands kilometers, I am carrying only one bag and I am fine with it. Everyone has everday outfits for seven days and by the end of the week, I will wash everything and we will repeat our outfits. Kids have one extra for accidents and I am counting that they will spend a lot of time in the beach without wearing anything so that we will be good. It is a plan and I will let you know was it successfull.

We are now enjoying our first day on holidays 🙂

P.S. Trip went well and if you have insensitive kids like me, they will watch Poyoco and Peppa cartoons while you can trow up as long as you want ( oh yeah, being pregnant and end up in turbulence is not good combination).

Life is all about perspective

Yesterday I had a great day. I was so happy and excited. The reason was this thing that would make me so miserable just two years ago. I’ve spend the whole day thinking about how life is made of perspective and how the same things can bring different feelings.

I had appointment with Gabi in her new school. It is school for special needs children. When we got inside, the school was full of children with various needs. Mobility impaired, intellectually impaired, both of that, etc. Also, in the hallway you can see all kind of equipment, like wheelchairs, walkers, stander, bicycles, special chairs, and so on. I found this image beautiful. Gabi was so happy and excited and I was so happy and excited because of her. She is going to school. What a wonderful thing.

After we came back from school, I’ve remembered myself just two years ago. At that time, Gabi was healthy child with “just” epilepsy that was hard to control, but she was beautiful, healthy and normal little girl. I loved the way she talked and think, the way she played and learned. After the meeting with our doctor, because of the antiepileptic meds that weren’t helping, I went home crying. I was miserable, hysteric, I’ve felt like world was spinning and I couldn’t breath. The reason was because doctor said that seizures are persistent and that they will maybe affect her thinking and learning in the future and that she will maybe have problems in school because of that and that I should consider maybe ask for more individual program for her when the school time comes. I was devastated. I felt ashamed, I felt like I was the worst mom in the world. Just think about my daughter and her being anything different that “usual” or “normal” child was something I couldn’t deal with.

When I remember that feeling, I am not sure should I laugh or cry. I would definitely give everything I have that someone tells me that now.

But now I know what diagnosis she has and what to expect. I know that she wouldn’t survive past teens and that we are so lucky that she is still in condition that she will actually go to school. That I have opportunity to see my daughter get into the school bus and go to school. I am so happy because of that now and I was so miserable back then.

Life is definitely about perspective. Same things have different feeling, different taste. We humans are so more adaptive than we think we are. We are survivors. Us moms, we are the warriors. It is in every one of us from the moment we have our children. We can survive enormous pain and be happy when we win little battles. We can change the perspective and live with hope and strength when everything around us is falling apart.

So, cheers for Gabi’s school. We are happy.

 

Third pregnancy

I am pregnant with my third child. This is definitely new experience for me. Not new as experience on pregnancy but new in a way I am dealing with it.

When I was pregnant with my first child I was immature college girl who didn’t know what happened to her.  I was so excited but also so scared. Everything was new to me and that was the whole new world for me. I have read so many books, articles, I was online all the time going through various forums and groups gathering as much informations I could get. I’ve watched every single thing, I was little paranoid also, counting days of pregnancy and comparing it to other pregnancies wanting to know is everything like it should be. I don’t have to mention healthy food and enough rest. It was my obsession. I was still in college and I was doing great as student so I can’t say that my behavior was irrational. I was just very into my pregnancy.

With my second child it was different. I was already very well prepared. I’ve planned my pregnancy and I was ready for it, emotionally and physical. I was relaxed and done less things by the book. It wasn’t burden to me, it was just period that I need to go through to get my baby and I was just like that, waiting the end of pregnancy as “reward”.

And here I go for the third time. This baby decided to come in the worst time ever. We are in the middle of huge changes in life, we have so many challenges beside raising a toddler and taking care of terminally ill child, and here we go. This was quite shock for me. After the first shock, I’ve accept the fact we are going to have another baby, but that’s it. I am entering in 5th month of pregnancy and most time I am not even aware that I am pregnant. If this baby isn’t such a kicker, maybe I would forget sometimes. I am in full speed, doing everything like always and swallow legs are the only thing that reminds me that it is time to slow down. I am not thinking about baby much, I haven’t bought anything yet and it feels like my mind is not aware of any of this right now.

Sometimes I feel guilty, but I know that when this baby comes, I will fall in love in a second and that is all we need.

I love my children the same. I’ve never thought that was possible and after the first child that you can love anybody in the same way, but now I know that you can. I have different experience raising my two children, but love is the same. I have different experience in pregnancy but love is still the same.
So, baby girl Mara, we are so looking forward to meet you and love you 🙂

Living with toddler

What’s the hardest thing in women’s life? Raising a toddler.

Every day is new surprise. And by the surprise I don’t mean tantrums, behavioral stuff, stubbornness or that “normal” things. I mean ideas. Every day, there is a bunch of new ideas in theirs head.

“Hey, why don’t I throw my sneakers through window? I could definitely drink water from the toilet, it looks really nice. Oh look, mom is putting a make on, I should make our house beautiful by putting it on the wall. This old lady has a nice dog, I wonder what happens if I put my finger in the dog’s eye? ”

And so on… their brain is working constantly and making ideas what to do next and you just have to deal with that as you know. Maybe you scream, maybe you cry, maybe you curse your hubby for making you pregnant at first place, but that’s not helping.

Today at the breakfast, while I was feeding my daughter, my little toddler decided that the better use of yogurt is body painting then food. Of course he knew that mommy wouldn’t approve that so he would put an angel face and spoon in his mouth every time I’ve looked. So, story short, instead of just making breakfast, I had cleaning the house at 8 am, bathing my son and being exhausted before the day began. And that is just beginning. Until noon he had plenty of new ideas and this is going on every single day.

 

Instead of going crazy, I always try to find positive side in everything, so I had to think hard before I could find any, and there it was.

Raising a toddler you will gain great skills. You will be best negotiator, you could deal with any crisis so you could become crisis management any time. You will become best salesman and you will definitely know that customer is always right. You can work in any stressful environment and keep up with every deadline because you know what means when your boss tells you “now” . You won’t complain on your colleagues or your boss because you have been through worst. Multitasking is something you do while sleeping. And so on. See? Raising the toddler really benefits you and if you raise more than one, you are definitely an expert.

When I am in a good mood I can definitely see positive side in everything, so for those other days, my advice is to keep going because we all know that it will pass one day and your little toddler would grow up and become normal child 🙂

Love for Gabi

June is the month of Batten disease awareness, so to raise it I’ve made Facebook campaign for Gabi. Sending love from all around the world. You can’t cure this terrible disease, you can’t help her, you can’t give her childhood back or give her chance to live a normal life, but only thing you can do is send positive vibes and love and live day by day trying to make the most of it. So send love to her💖