Wednesday, 27 February 2013

Something new to worry about

The last few days have scared the sh** out of me.

On Sunday Sunny had a hemiparesis on the right side of his body. He could not lift his arm anymore, he could not grasp anything with his hand, he could neither stand on his right foot nor walk. And I am not sure about that but I believe he also could not swallow properly. We called the emergency doctor and were rushed to the hospital with an ambulance.

They made a CT scan on Sunday but his brain luckily did not show any signs of a stroke or a bleeding or anything similar to that. Yesterday they ran an EEG which was also NAD. The next thing they will do is an MRI but it is not until tomorrow that it can be done because it is fully booked. So they discharged us yesterday because there was no need to stay at the hospital and the venous access needs to be renewed for the MRI tomorrow anyway.

I am so anxious because the cause has not been found yet. It scares me to death that it might occur again and we do not know why or what can be done against it. Of course I am glad that it obviously wasn't a stroke (which is what I thought of immediately when I noticed his limp arm) and that his brain seems to be fine but it is disquieting not to know why it happened.

I have a lot of things to do and arrange today: unpack, wash, organise things and pack stuff again. For the future I have to get organised at home much better, this is for sure. Since we had to rush to the hospital so quickly I just had about 5 minutes to pack a bag for Sunny and me and since I was so scared I was like a headless chicken, running around and tossing random stuff into our bag. My husband brought us some more stuff when he came to the hospital but my laundry is such a chaos that he had a hard time finding what I told him to bring. I really need to get this done properly in the future so that he will find the stuff I need him to bring. Apart from that I will prepare a check list and put it on our bulletin board in the kitchen in order to have it on hand when I need it. I already have such a list but it is on my computer and there was no time to print it out on Sunday. We are frequent guests to the hospital and I just have to face the reality that hospital stays will happen again and again and I have to prepare myself better for that. This kind of chaos is something that cannot go on like it does.

So, this was my short update. I guess I will not be able to post for the rest of the week as we will have to stay at the hospital until Friday at least.

Thursday, 21 February 2013

i am fine

when people ask me how i am i normally say "fine"
because i am fine
because i feel fine
because i believe i am fine
but then i meet a very good friend for a cup of tea
and she unintentionally asks me a question
a single question
the wrong question
and all of a sudden
out of the blue
in a split second
i break open
i am raw and vulnerable and full of pain
and tears stream down my face
i am shocked
by my own reaction
by that wave of emotion that hit me so hard
without warning
because one moment ago i was fine
and it hurts so much
that i just take all those feelings
and stuff them back deep inside where they came from
because i want to be fine again
until my emotions catch me off guard again
and blaze their trail again
another time
when i am inattentive again
and my shields are down
because i am fine

Tuesday, 19 February 2013

He's got balls

... and I mean that literally ;-)

Lately, Sunny is crazy about balls. It took him years to like them. When other kids already loved playing with balls, he couldn't have cared less about them. We tried to play with balls with him for years but he was so not interested in them.

Now, within the last weeks, they have become some of his most important and most loved toys. And here is my confession: I really, really dislike playing with balls. I am very bad at playing with balls. I do not have any talent for balls whatsoever. I am not good at throwing them and not good at catching them either. I am annoyed at how they roll away when you were not able to catch them and then you have to run after them. But the point is that Sunny wants to play ball with me together. So what is a mother going to do? Yeah, you guessed right, we play balls together because that is what makes him squeak with delight, giggle and belly-laugh right now. And he just cannot get enough of it.

So the first thing he does as soon as he comes home is get all of his gazillion balls and gather them on the landing of our staircase. Then I have to sit down on the bottom of the staircase. He throws all his balls down the stairs and I have to throw them up again on the landing. Mind you, I said that I am not good at throwing balls. So sometimes I throw a single ball up there three times until it stays on the landing because
a) I threw it too hard, it hits the wall and immediately comes back to me again
b) I threw too soft so that it does not even make it up to the landing and it bounces back from one of the stairs
c) I threw the ball crappy because I always try not to hit him with the ball (which is not easy for someone like me because I am bad at aiming, too, and the landing is not very big) and it goes anywhere.

This game seems to me to go on forever, until my arm hurts from throwing. And just as I sit comfy on the floor he shovels all of his balls down on me at once, they jump and bounce anywhere and since I am not good at catching them (and there are too many balls to catch now anyway) they roll away and I have to get up again and gather them. Did I already mention that this annoys me?

Believe me, there are many more balls in this house. I just could not find more right now. They are hidden EVERYWHERE. Yesterday I found one in the hood of my winter coat that was hanging at the wardrobe. Must have bounced in there somehow.

But you know what? Just as much as a dislike playing with balls I love how happy this game makes him. His joyful laughter is the most beautiful sound in the whole wide world to me. And this is why I play ball, every single day, although my arm hurts and I am annoyed and I would rather do anything else. Because that is what I do: always try to make him happy if I can.

Sunday, 17 February 2013

We are back

Does anybody even remember me? It feels like half an eternity has passed since I posted the last time. And this place is probably deserted now :-/ I do hope my few readers will come back!

We returned from my parents already some days ago but with Sunny being home due to a holiday week there was absolutely no time to post yet. He is extra clingy lately and needing me constantly so I am glad that he will return to kindergarten tomorrow. The house is a mess and I just cannot pick the space up thoroughly because he wreaks havoc again in no time. I always call him "master of desaster" because he is the most content when he is sitting in a huge heap of toys and books and stuff. :-)

We had a great time at home and enjoyed ourselves a lot. Sunny had a cold while we were there (nothing serious though) but that did not keep us from diving deep into the carnival, me attending some of the parades and Sunny watching them with my parents.

Most of all he loves the bands and especially the drums. This is what makes him really happy and he had so much fun there. When I told him we were going to the carnival some weeks before we left he immediately signed "drum" because he remembered from last year what he loved the most about it. He was dressed as a cat and got loads and loads of candy by the attendants of the parade. Once he was startled by a witch but my mom could soothe him before he burst out into tears. It was really cold so I had to make sure he wore warm clothes. So he looked like a really fat cat with his winter coat and snow pants under the costume ;-) He was the cutest kitty cat ever! <3

The region where I come from has a centuries-old tradition of celebrating the carnival and I am proud to wear our traditional costume while I am there and attend the parades. It is so much fun and it feels so good, so homey. It is something I really look forward to every year and I never fail to go home during that time. I searched Youtube for some videos so that you can see what it is like. Maybe you like it, maybe you think it is weird. ;-) Anyway, this is not from my home town but you get a good impression of what it is like. Just to watch the video now makes my heart swell with happiness and I am already looking forward to next year!

Thursday, 7 February 2013

Nothing has changed

Last week I opended the mailbox and found a letter of our geneticist. We went there last fall to have yet another, more specific series of genetic testing done, for the third time now. I was a bit nervous as I opened the envelope and before I took the time to read it properly I skimmed over the text quickly in order to find any results. But there were no results. Sunny is still undiagnosed. And, moreover, we reached the end of what can be tested by now. The letter said that more precise testing would maybe be available next year and that we should contact them again if we would like to have it done then.

As I mentioned before, I am cool with Sunny being undiagnosed. Truth be told, I would even have been very surprised had the letter contained any result and finally provided us with a reason for Sunny's delays. And although I really did not expect any result at all (after all the testing that has been done with regard to genetics and anything else that can be testet I guess I just got used to getting letters with no result in the end) there was still a strange feeling I had when I saw that the letter did not contain anything. Again. I cannot even put my finger on the exact feeling I had. Was it disappointment? Was it emptiness? Was it despair? Was it sadness? I don't know.

I do know, however, that nothing has changed and that sometimes there are worse things than that. And I do know that a diagnosis would not have changed much too, apart from having a name for it all. And maybe an outlook on a future I would not want to know about.

The feeling I had vanished quickly and I am fine. We have not talked about it thoroughly yet but from my point of view I do not want to pursue any more diagnostics any more. It is what it is and we will embrace the hard times and celebrate the good times. Like we always do.

PS: This week is crazily busy as we are going to visit my parents tomorrow and will stay there for almost a week. So there is a lot to do and organise before we leave. I am not sure if I will find the time to post while I am away as we are heading into the carnival season and hopefully will enjoy ourselves!

Monday, 4 February 2013


I guess this year was the first time that the Superbowl was shown on a "regular" TV station and not on a pay TV station in our country. As I was curious I recorded the show and the recording is now on TV while I am doing other things (like blogging for example ;-) ).

I still try to figure out the rules as they seem to be quite complicated to me as a layperson. I have never really watched a football game before and the commentators on our TV station try their best to explain the rules and the background of the game but I also checked Wikipedia for more information. Wikipedia said that the main goal of football is to gain space.

Watching the game had me thinking that we also try to gain space in our lives, to achieve more, over and over. And we fight for that just as much as the players on the football field fight for the yards that bring them closer to the goal. Sometimes we are reverberated and have to start all over again. And sometimes it is even one step forward, two steps back. But slowly and steadily we fight our way to the end zone of the field and we even manage a touchdown from time to time. This is even more true for our kids who have to fight extra hard for their accomplishments. But they never give up, they tackle their obstacles, they fight their way through the difficulties and do not cease to amaze us with their spirit, perseverance, and determination. And we, their parents, will always be there to tackle the difficulties, to attack problems, to defend them as good as we can and to celebrate their victories together with them. We are a strong team. And we all deserve our own Superbowl trophy for that!

What I really loved about the show elements of the Superbowl was that there was an interpreter for sign language while Jennifer Hudson and Alicia Keys sang at the beginning of the Superbowl and how the players, these strong, grown men - tall like trees - cried when the national anthem was sung. And how everybody in the stadium cheered during the anthem. That really gave me chills. Here, when the national anthem is sung or played, it is a very serious matter and no one would dare to cheer! ;-) Oh yeah, and the tight pants of the players are not too bad, too! ;-)

Hope you all enjoyed the Superbowl Sunday! And congrats to the Baltimore Ravens!

PS: This is basketball, not football, but check out this cool referee! :-)


Edit 05/02/2013: As the topic came up in the comments, I googled for the commercials from the Superbowl and found this link where they are collected.

Friday, 1 February 2013

What do they see?

I often wonder what other people see when they see Sunny.

Do they see that he walks and runs unstable? Or do they see how happy he is when he can run around, chasing birds, just being the carefree little boy he is supposed to see? Do they hear him laugh giddy with pleasure?

Do they see his glasses and pity him because he has to wear them although he is still so small? Or do they see how his beautiful eyes marvel at all the big and small things around him? Do they see how he takes it all in, processing the information in his own unique way?

Do they see that he talks to me with gestures and do they hear the sounds he makes in order to communicate with me? Or do they see how much he has to tell the world and me and how he uses his whole body to get his point across? Do they see how happy he is when he is understood? When we both share a language that not many people around us understand.

Do they see that he has problems with eating and that he still has to be spoon-fed? Or do they see that he is lucky enough to eat by himself, not needing a g-tube or anything like that. Do they see that he can swallow on his own? Do they see how much he loves cake and ice cream, like any other little boy?

Do they see Sunny and notice immediately that he has special needs, superimposing everything else that is to be discovered about this child? Or do they just see him and feel immediately that he is such a special boy, full of love, gentle, kind, content, with an ever-sunny disposition?

Photo credits

Do they see a mom who needs to be pitied because of her son? Or do they see a mom who loves her life, who is happy and thankful and full of fierce love for her little son, the light of her life? Do they see that we have a special bond that has always been there and always will be there?

I often wonder what other people see when they see Sunny.