Feeding tube

It’ s been a year since Gabi has trouble with eating and drinking. Some days are better and some are the worse, but basically she can’t eat or drink like she use to. It is causing so much stress for us and for her also. She lost some weight so I keep pushing and trying to give her more and more food, but it takes so much time to do that. Some days it feels like feeding is something that I am doing hole day. One meal approximately takes 45 minutes and drinking one cup of liquid around half an hour, on bad days even more.

Regardless to all that I was so stubborn about accepting that she needs PEG surgery. Like everything in this disease, losing every function you feel some kind of guilt. Maybe you didn’t try enough, maybe you are considering this just to make it easy for you not her, maybe it will make things worse, maybe that means she is closer to final stage and so on… It is so easy to find some quilt and it is so easy not to have courage and put your feeling aside and do what is best for her.

Last few months I think I definitely changed. I saw so many parents struggling with same problems as I, with same feelings, ripping themselves apart and that’s not helping anybody… especially not the children…

This disease is such an emotional rollercoaster, but I have decided to find my own path to struggle with it. I’ve decided to put my emotions aside when it comes to making decisions. I won’t let my feelings get between what’s best for her. I won’t let my daughter loses weight and struggle eating just because I can’t handle another lost battle.

So, today we had an appointment for PEG surgery.
Doctor was great. He explained everything I wanted to know, answer every question and took time to repeat it as many times I’ve needed. We scheduled operation on 10th August and instead of being down or worried I am actually looking forward to it. I know that my daughter will benefit from it and I can’t wait to see her happy and satisfied with getting enough food and liquid. We will gain something from it not lose. Disease is the one who is taking things from her but not medical procedures that are working on making hers life quality better. This is opportunity for making things better for her, so cheers to that!

 

 

 

I am Hamburger

We did it. We move to Hamburg a month ago. We wanted to give a Gabi chance to live dignified life no matter how long it would last. In Croatia we couldn’t provide that so we picked Hamburg, Germany,  because of the doctors specialised in this disease and because of schooling and supporting system here in Germany. And here we go 🙂

I can’t say that there is much to say at this beginning. We are just dealing with paperworks and trying to figure out everything. And Germany has lots of paperwork to do. It is very hard, bureaucratic country with lots of rules and papers but on the other hand, you get everything you need to function normally, no matter how ill is your child and that is what I love here. She is equal citizen as any other and this country is taking care of that. That is something we couldn’t imagine in Croatia, so we either could leave or whining and we choose to leave.

Now we have to deal with ourselves. Find a job, do everything we need, learn language, assimilate to new culture, find friends, make our children happy and satisfied , and so on. We are only at the beginning but I can’t say it isn’t hard. especially when you don’t know language or procedure here but we keep going and working on that.

So here are the tips for moving into another country:

 

 Don’t expect miracle                                                                                           

No matter how good is for you to move in the another place and no matter what are the reasons,  be aware that you wan’t feel any benefit at the beginning. First days will be great, because everything is new and you have so much to see and explore but that is only the tourist phase and it wan’t last. After a few days you will be sick of exploring and you will have to do the first steps to start a real life. And then it will hit you hard. But like the first phase, this second phase won’t last long either and you just need to go through it. You will feel benefits at the end and you will feel like home one day. Just keep that in mind and don’t let your feelings interfere with your perspective.

Start with little things        

                                                                                                            
You can’t have your old social structure in new country. You are newbie and don’t let that get down to you. Start with little thing. If you have a child, going in the playgrounds will be good for you and your child and you can meet some parents that could be your future friends. If you have pet, like a dog, you can go to walks in the park where are plenty of dog owners and you already have one sharing interest and that is something you can start with. If you had any hobby or activity in you home country you can find a group to join in your new place. That is also a way to connect with people with same interests like yours. And finally you have internet. Search for groups of people who are also just moved and want to share experience and maybe socialise. I put that in the end because real contact is something you will desperately seek first weeks or months in new country and virtual one you can always have with your old friends.

Inform yourself    

 Inform yourself about everything and I mean everything. If you haven’t done it before moving this is definitely a deadline. Search and explore about basic things like public transport, doctors nearby, schools, kindergartens, banking, phone and internet operating, procedures and even laws. If you are inform you will definitely spare yourself of wasted time and save yourself some money and most important you won’t get surprised.  When I just came in Hamburg and sign my address, I’ve got a letter few days after with a very short deadline where I have to inform this Hamburg school center in what school my daughter will go. I have only had few days to do that but I was stunned because I didn’t know yet and this wasn’t easy to do because my daughter has special needs and she can’t go to normal school and I needed advice from the doctor where she could go, but  I didn’t solve our insurance yet and it took only a moment to be in stress and going crazy about something I haven’t heard before. We solved our issue but it costed me time, money and some sleepless nights, so informing is best thing you can do for yourself.

Enjoy  

                                                                                                                                           

In this period where you still don’t live a normal and everyday life, enjoy. If you are not working immediately, children are not in school and kindergarten while you are preparing everything, enjoy a little bit. There’s no much opportunity in everyday life to be with your family and have more time than usual.  Set daily goals what you need to do and enjoy free time. Explore, go to walk, have a picnic, find interesting places, play a sport with your family. It would be like little treat after everything stressful that is going on and this will keep you fresh and strong 🙂

Arrival

We had a rough few days.  Gabi with cold, then I got the cold and Vigo got cold and I could count nights of non sleeping.

Then in Friday, my hubby had a car accident. Taxi driver drove thought red light and my hubby crashed into it. Thank God he is alright, which I can’t say about the car. Being without car with toddler and child with disabilities is living nightmare.

So, goodbye sweet Toyota.

But, I decided that I am gonna write about something else.
Last night, hubby and I decided to relax and watch a movie. My choice was “Arrival” since I have heard so much good critics about it.
I can only say, I had “wow” moment.
Spoiler
The moment when Luiza (main character) knew future and that she will have a daughter who will die in childhood due rare disease she has, and still, she decided to do everything same as she done, which means going through enormous pain of loosing a child, I had “wow” moment. 
 
It is exactly how I feel. It is what life really is. 
 
This disease will take my daughter sooner then it should. It will leave me childless and in enormous pain, but if I knew everything before, I would do everything the same way I did. I would have her.
I would go through all the pain, just to have this experience with her. Just to hold her, kiss her, hug her, hear her laugh, touch her and smell her. All the memories we have together and every day I have privilege to be hers mommy, it counts, it worths.
These are the things that life is made of. These are the things which makes life worth of living. There is no disease and there is no death which could take away this things. Love is eternal.

 

Temperature

If you could say what is parents worst nightmare, I think it would be temperature.

Specially if you are google freak like I am. All around the internet you can find all kind of scary stuff that temperature could be symptom of. You never know when to go to the doctor. If you come too early they will send you home, but if you come too late, something bad could happen. If it’s nothing big, your child could get something much worse in doctors waiting room. And so on…

It really freaks you out.

Last two days Gabi has temperature. And I am freaked out. This time not because all that stuff I mentioned. This time it is real.
My daughter suffers from fatal neurodegenerative disease, called Batten’s disease. If you could name one disease that is the worst thing that could happen, this is the one.

I will explain it all in one other post, but basically it is disease that is taking your child bit by bit. Gabi was happy, healthy child until age of 4. Then epilepsy started. After all kinds of tests and after a long period of watching how your child is slipping away, we finally got diagnosis. That terrible diagnosis, that tells you that she will never be better, that she will be much worse, that she will end up bedridden, blind, not able to talk or eat and that she would die, probably around age of 8-12. That is Batten’s disease.

Sometimes that disease really gotten into our lives that we accept it as part of our reality and not thinking about it every single second of the day, but at days like this, where your child  simply gets temperature, you know that because of this disease, nothing is simple anymore. You know that any infection means life treating condition for your child, you know that with every infection she will lose another function, that with every infection you are risking to end up in hospital on infusion, and so on…

So we are fighting now. She sleeps like an angel in her bed and I wonder is she aware of any of this.

Weekends, aghh

I can blurry remember my ex-life.
By ex-life I mean life before I became mommy, but when I do, I remember how I use to love weekends.
Oh, those weekends. Beautiful weekends when I could relax, sleep, enjoy reading, drinking coffee in the morning, hang out with my friend.  I could do anything, you name it. I would usually done nothing special, but still, I could if I want 🙂

Well, after children weekend are scary two days when you need to be very careful and plan every single second with activities, or it could turn out to be disaster. You need to think of how you will make their day fun and active and how to survive it yourself.
But when you don’t, I called it “those days”.

I had one today. It is snowy and wet outside, it is cold outside, it is post Christmas period and everyone is home dealing with their post holiday depression stuff. I wanted so much to stay home and do nothing, but nooo. I have active toddler who is throwing his snickers in front of me, saying he wants to go out. So we went.

We walked through that muddy, wet snow like two crazy folks and only one who could sympathize with us are dog owners since they know that feeling. My feet were wet in a second (attention: don’t buy the cheapest boots for snow, save money and walk in socks, it is the same thing) and I wanted to go home. Vigo was delighted by that mud. I blame Peppa Pig. Thank God it didn’t lasted long.

Afternoon, I needed to go through that torture with Gabi, because I can’t leave her without fresh air.
So the same picture again, expect Gabi hates being cold, so we went for short walk just to get my feet wet again.

So, if you are reading this, you probably think what am I talking about, I just had two walks today and complaining.
Well, that’s not the point. Point is, if you don’t have fulfilled day with kids and you think you got easy way out, you think wrong. You will be punished. Hard.

Enjoy 🙂

“Socks in a sink”

“Cleaning the kitchen”

” Being artist on walls and radiators”

” Cleaning the closet”

Don’t underestimate your kids :)) 

This is my first :)

Hi everyone.

This is me trying to live normal life with not so normal circumstances.

I am just ordinary 29 year old girl, who lives in Croatia, Europe with my hubby and two kids.

My son Vigo is 21 moths old little toddler, pure energy bomb and you will hear a lot of him 🙂

My daughter Gabriela is 7 years old little girl, who suffers from terminal neurodegenerative disease called Batten’s disease. She is ours bright star who made our lives everything but ordinary. She made us do everything possible and impossible and impact our lives in ways that are hard to explain, but I will try 🙂

Besides that, we love to travel, we love to cook and eat good food, we love to explore new things, listen a good music and survive everyday challenges.

You would all find it here and I hope you would enjoy 🙂

My first picture to post will be from our trip to Rovaniemi, Finland, Santa Clause Village, where we went to make my daughter’s wish come true, to meet real Santa.
So if you did’t believe that real Santa exists, you are wrong, Gabi would tell you 🙂