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.

 

Siblings

This morning, my little toddler was crying because he wanted to take his sister’s medicine and I said he can’t.

This is happening for few days now and I think we got in this phase when he will need some answers regarding to sister’s condition. It is really hard to explain that to 2y old child when grownups can’t understand either, but I will try.

For now he only remembers her as sister who doesn’t walk or talk or can feed herself, dress herself and she needs mommy for everything. He isn’t aware that she doesn’t see either, but I can understand that it is hard to process in his age.

He was always so supportive in his own little way. When Gabi started to lose ability to swallow, he would always started to cheering while she was eating and drinking; “swallow Gabi, you can do it! Come on Gabi, drink, go sis”. Or when I would trying to walk with her, he would walk in front of us, imitating ataxia and “showing” his sister how she can walk by herself. When they are in playground, he doesn’t let anyone come near her or touch toys with which she is playing with. He is very protective and supportive and he is only 2 years old.

This things are maybe heartbreaking but they are beautiful in some way and I am happy that they have each other.

My worst nightmare is how it will affect him after Gabi dies. It is something I can’t even think of because it is to hard and I can’t prepare him for that either. I know that is wrong, but it is hard to live day by day and then preparing that we will lose her. I know that as a pact in some part of my mind but I can’t really feel that because it still seems so impossible.

They have bond that is so strong that will survive even death and I am so happy to have them both, no matter how hard it can be. Soon they will have another sister and I believe that is the most precious gift I could give them. 

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💖

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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!