Friday, 29 March 2013

The shortest update in the history of mankind

All is well here, I just do not find the time to blog properly. Sunny is on holiday this week and will also be home next week, and this is when blogging is nearly impossible for me.

I returned from my parent's place on Tuesday and then had loads of laundry to do, pack away our stuff, get a lot of things organised and so on. Just the usual stuff.

It is just that the last weeks have been crazily busy and every time I started to catch up I either visited my family or had to stay at the hospital with Sunny.... I have the feeling that I will never be able to catch up on all my favourite blogs and all the other social media stuff. And as much as I love social media sometimes it feels like a burden because I always feel the need to be on top of everything, to stay in touch with my fellow bloggers and all. Next month I am going to attend the confirmation of my nephew which means another weekend away from here.

Photo credits

The weather is still horrible in my neck of the woods, it is cold, rainy, and grey. Anyway, I just wanted to wish all of you wonderful Easter celebrations! I hope to get back to my regular self again soon. Enjoy the days with your families and loved ones!







PS: So glad I do not have to take care of any Easter decoration because the Easter bunny never left its place ;-)

Monday, 25 March 2013

The Week In Pictures: calendar week 12/2013

A visit to the kids' dentist
Driving home in the rain after one hour in a traffic jam

Easter crafts from kindergarten
Easter cookies, also brought home from kindergarten
Baptism of my nephew

Friday, 22 March 2013

Wounding and healing

Wounding and healing are not opposites. They’re part of the same thing.
It is our wounds that enable us to be compassionate with the wounds of others.
It is our limitations that make us kind to the limitations of other people.
It is our loneliness that helps us to find other people or to even know
they’re alone with an illness.
Rachel Naomi Remen, M.D.


I read this quote some days ago and it resonated with me. And while in the first place I do not think of illness when I read it but of special needs I think it matches perfectly nevertheless.  

Very often I still feel wounded and I am still in grief. But at the same time I am healing, each day a bit more. And yes, having a child with special needs makes me see other people with special needs in a new light. It has made me much more empathic. It has boosted my awareness and my compassion. And it was my loneliness in this journey that made me start to blog and I am glad that I found others out there who face the same difficulties and encounter similar situations. I truly hope that we can help each other through this, that we can laugh together and be there for each other when the times are tough.


In additon to this I want to share a beautiful video which made me well up with tears several times. It is about empathy and seeing the world through the eyes of someone else, if only for a moment.



Have a wonderful weekend, my friends! :-)







PS: I will go and visit my family this weekend since my nephew is going to be baptised. I wonder how Sunny will behave in church during the rather long service ;-)

Thursday, 21 March 2013

Can you imagine...

... that I just cried because one of the nurses of our paediatrician is moving to another city and had her last day in the practice of our paediatrician today?

I went there to pick up a prescription and when I was about to leave and already halfway through the door she called after me, got up and told me that it was her last day today. And immediately my eyes welled up with tears and I asked her if I could hug her. I wished her the best for her future and was so sad because she was always super nice to Sunny. She said that she already cried, too, but then again this is something totally comprehensible since this is her working place and she has to leave all her lovely colleagues and her great boss. 

However, I think I have taken being a wimp to a whole new level. ;-) But people who are that nice to my son are near and dear to my heart, therefore I just had to shed some tears.


Wednesday, 20 March 2013

I love you, too

I tell Sunny that I love him at least once a day. Each night when I put him to bed the last things I say to him is that I wish him sweet dreams, a good night's sleep and that I love him fiercly. He never responded or reacted to that which always made me a bit sad. Even when I asked him occasionally if he loved me, too, there was never any reaction.

On Sunday night I did what I do every night: tell him how much I love him. And then, when I asked him "do you love me, too?" he suddenly put his arms around my neck, pulled me close and hugged me tightly. My heart skipped a beat and I was the happiest mom on the planet!

Then there was another incident yesterday that made me so happy again. We sat together at the table with his talker. He pressed the button for nice/dear/beloved/darling (there is no appropriate 1:1 translation for the word), then he pulled at my arm in order for me to come close to him. He then hugged me and afterwards he pressed "Mama". Awww, that made my heart melt into a puddle in a instant!

Photo credits

I have yet to experience him to tell me "I love you" in his own words, with his own sweet voice. But for the time being this is more than I ever dreamt of. It makes me so happy that he finally knows how to show and tell me that he loves me, too!







PS: It is funny that I found a post dealing with this just last week from the Love That Max linkup. I wanted to write a response to it since I read it but got distracted and forgot about it.

Monday, 18 March 2013

The Week In Pictures: calendar week 11/2013

Hi folks! I hope you all had a wonderful weekend!

Here's to a happy Monday and a happy week to you all!

Cookie treat from far away
The return of winter
Enjoying good food
The sun came out on Saturday again



Friday, 15 March 2013

Finish the Sentence Friday - 3: I did something stupid


I am finally back on the bandwagon and linking up with FTSF.


I did something really stupid once, I…

... tried to hide my online shopping parcel from my husband. And he found it. Ugh. 

You know, my hubs is not always too enthralled about my online shopping behaviour. Because I love online shopping. I think it is the best invention ever: you can take your time to choose what you want to keep, try it on several times, you can combine the clothes with the ones you already have at home and see what matches, you have the biggest variety available and do not even have to leave your couch for it. Paradise! Very often I order a bunch of stuff, try it on at home and return most of it again. Not because I love ordering stuff just for the sake of it and not keeping anything but because a lot of clothes look totally dorky when you try them on and do NOT resemble the picture shown on the internet. So I order a lot and only keep a bit out of that. And since my man ususally just notices what is delivered but not what I return we have some discussions here and then... ;-)

So I started to use a certain strategy: hide the stuff from him during the process of choose and return, then wait a few weeks and then, casually, wear it at any random opportunity without even mentioning it. Sometimes he might ask me "are these jeans/shoes/whatever" new?" and I go "this?? No, that's oooold, I just haven't worn it for a while" or "actually I already bought that last year" (um.... well. It's not so flattering for me to admit all of this...).

Anyway, some days ago I received a parcel while he was home. I answered the door and thought "where am I gonna hide this??" and the only place that came to my mind was the space underneath the stairs of our back door entrance. I stuffed it underneath as far as I could and wanted to fetch it later. And then I forgot about it.

Turns out he has the nose of a drug-sniffing dog because some days later the parcel stood on the kitchen table. Oops. He just put it there without any comment to me. I found it when I went in there, sitting on the table like my big fat bad conscience. I am still embarrassed when I think about it. And I still wonder what he thought when he found it.

And this was when I decided to stop doing this. And I am really ashamed and sorry. :-(

But before I put on the penitential robe let me just take those three parcels to the post office before he comes home! :-D


Thank you to Kate of Can I Get Another Bottle of Whine…, Janine of Janine’s Confessions of a Mommyaholicf, Stephanie of Mommy, for Real and Dawn of Dawn's Disaster for hosting Finish the Sentence Friday!

Next week's sentence to finish: "One time when I was bored out of my mind, I..."




Thursday, 14 March 2013

From delay to disorder to disability

We have been in our journey for more than five years now. In the beginning we were always told that Sunny was just delayed and that he might close the gap to his peers some day. But as the years pass by the gap is widening instead of closing. And nobody talks about closing the gap anymore.

Instead, the term "developmental disorder" is more frequently used now and also the term "disability" is being brought up more and more. It shows me that this thing we are in is something that is going to stay and that it will not eventually and miraculously dissolve like fog in the sun. Although I wish it did.

I used to be offended when somebody asked me about Sunny's "disability". I would always correct the person and say "he does not have a disability, he is just delayed". I really had a hard time hearing the word "disability" in connection with my son (and I still do). But while the gap widened more and more and while reality caught up on us I grew into this special needs world as well. I had time to get accustomed to the facts. To accept things as a given. To let go of my expectations. To see the reality we are in as it is getting clearer day by day. And, therefore, I started to talk about his disability now and then, too. I am still using the term "developmental delay" most of the time, but I also sometimes say that he has a disability. And while I still do not like that term and it is still not easy for me to talk about it, sometimes and in certain situations it feels more appropriate. And sometimes it emphasises our need for a different treatment, one that helps us better.

I try not to close my eyes from the facts and my heart knows that I have to start living with this new word in our life, one that will stick with us in the years to come. This word leads me to another world other than that of developmental delay, one where I felt home in a way because I had time to settle in there. It was a place that still opened up possibilities in any direction. But I feel that I have to leave this safe world as time moves on, and go to a new world of uncharted territory. The world I still have to get used to and where I will have to find a new kind of home in.


Monday, 11 March 2013

In love with Girl Scout Cookies and my blogging friends!

Some time ago I had a conversation (in the blog post and the comment section) on Girl Scout Cookies with Misty from Meet The Cottons. She asked me about my favourite cookies. When I had to admit that we do not have Girl Scouts here and, therefore, I never ate any Girl Scout Cookie in my whole life, Misty almost could not believe it. She said that everyone was entitled to enjoy Girl Scout Cookies and that she wanted to help me close that gap in eating experience in my life. So, a few e-mails back and forth later I decided on the kind of cookies I wanted to try.

Fast forward some weeks later. Today I received a package in the mail. It was from Misty. It included a box of Samoas, the cookies I had chosen. I was so curious to know what they were like so I ripped open the packaging and tried one immediately. And they are SO delicious that I just ate another one. I will savour them because I only have one box, so I'll indulge in them only now and then.


I want to point out how much I love that Misty was kind enough to make the effort and to invest the money to have those cookies shipped to me. It really is such a kind gesture and I appreciate it so very much. Thank you, dear Misty, I am really glad that you cared that much! And, as I already said, if you ever need anything from my side of the world, just let me know!

Sometimes the internet still amazes me. It makes interaction across the globe so easy and such a normal thing but, when you really think about it, it is still a huge accomplishment! I love it!




Sunday, 10 March 2013

The Week In Pictures: calendar week 10/2013

If you missed the first post on my new little series, please check it out here!

I can smell spring!

First ice cream of the season
Playing ball in the sun


Friday, 8 March 2013

Today is International Women's Day!

Yes ladies, today is our day! I wanted to share this with you because I think women are awesome! Well, some men ;-) are awesome, too, sure, but this is our day today.

So celebrate yourself today! Feel good about yourself today. Think of three things you like about yourself. Because most of the time we only think of what we are not good at, what we don't like about ourselves. Think about it and let me know in the comment section what it is that you like about yourself. Okay, I admit it, I read this on another blog and just loved the idea!

I will start and tell you what I like about myself:
1) My readiness to help others when they need a hand.
2) I try to see the positive in other people and give them the benefit of the doubt.
3) My sparkling eyes.

Wear a nice outfit today, put on some make up (if you like to wear make up, that is) and just feel good. Enjoy the day and tell yourself: "I am gorgeous!" Because we ARE gorgeous!

Happy International Women's Day!!


Five Minute Friday: Home

Today I will link up with Lisa-Jo Baker for Five Minute Friday for the first time.

What does Five Minute Friday mean? Quote from Lisa-Jo's website:

1. Write for 5 minutes flat – no editing, no over thinking, no backtracking.
2. Link back here and invite others to join in.
3. And then absolutely, no ifs, ands or buts about it, you need to visit the person who linked up before you & encourage them in their comments. Seriously. That is, like, the rule. And the fun. And the heart of this community..
Oh and Ahem, if you would take pity and turn off comment verification, it would make leaving some love on your post that much easier for folks!

I will give it a try today. 



Home...

GO

When I think of home, the first thing that comes to mind is my son. More than anything else I want to give him a safe home, a haven where he always feels loved, protected, and welcome. A place where he can be just himself, without anyone judging him for his unfamiliar behaviour. I hope that when he is grown up he always remembers this house as his home where he felt comfy and protected.

Then I think about my other home, the one I left more than ten years ago. The one my heart still aches for on some days. My home town, the place I always said I would never leave. But then you meet you to-be-husband and you have to decide if never really is never. Or if you are brave and couragious and take the leap into the dark and the unknown and leave the town where you were born and raised. The house you grew up in, the friends you have known since elementary school and who stayed there because they love this town just as much as you do. And sometimes my heart hurts for that place, therefore I try to return as often as I can.

STOP



Wednesday, 6 March 2013

What can you expect from your friends?

Well, maybe the title of this post is wrong because the question is if you are even entitled to expect anything from anyone. So it might be rather "what do I expect from my friends?"

I have a friend. A very good friend. I have known her since we were 14 and our friendship has never had any breaks or big conflicts. All those years we stayed in contact although we lived far away from each other and, by the time we met, neither had a driver's license nor a car and were still too young to travel alone by train. But we still managed to keep in touch all these years which I think is a big accomplishment back in a time where there was no Skype, no Facebook, no mobile phones, no Whatsapp, no possibility to text or e-mail. Just the plain old telephone or snail mail. And I guess this might show you how proud I am of this friendship and how much it means to me.

My friend has three kids, all of which are neurotypical. They visit regular schools and kindergartens and were never really sick apart from a cold here or there or maybe an ear infection. Things that all kids go through from time to time. We do not meet very often, although we live closer to each other now. But each of us has her commitments and so we keep up with regular phone calls and, as of late, Whatsapp messages since she has a new mobile phone now.

I know she accepts Sunny for who he is. I know she likes him. But I also know that she just does not get it, this special needs thing. She is so far from getting it. She cannot even imagine what it is like. And I have the strong feeling that she does not even want to try to get it. Even more so, I feel like she shields herself from it all deliberately. Like "if I do not see it, then it is not there" or "if I do not deal with bad things, they will not happen to me or my family". I feel that she is totally blinding out all the negative things we have experienced on our journey so far. She does not want to deal with it and does not want to burden herself with it. Of course, when something happens she asks how we are, but it is always on a rather cursory level.

Some years ago our doctors assumed that Sunny might have autism. I was shattered and devastated and she was the only person I opened my heart to and told about it. She did not have any words of comfort for me. All she did was to reply "I do not know what to say" on the phone. Over and over again. No "I am so sorry for you" or "is there anything I can do for you?" Nothing. I could tell she was shocked, yes, but that did not help me. I needed some comfort which she could not give me. And maybe she was shocked because she had just learned that bad things can happen to kids, too.

With our hospital stay last week there was a similar situation. I informed most of my friends via Whatsapp or text message that we were at the hospital and what had happened. They texted me back, all of them completely shocked, and some of them also called me. She also texted me back and told me how sorry she was for what happened. We texted back and forth and I know we were in her thoughts. When we had to return to the hospital for the MRI on Thursday I informed her afterwards that Sunny was okay. She then wanted to know if any doctor had already "remarked anything", which is a very vague question. I did not know what exactly she was referring to and told her that yes, of course, I had already talked to the doctors but that there had been a lot of examinations and that she needed to clarify her question, i.e. if she was referring to a particular examination. Because she already knew that all examinations were NAD. She answered that she was referring to the reason for the hemiparesis. To which I replied that the doctors did not know. She wanted to know if they told me "anything else" because I was asking what she was referring to and because she thought we were "only" there because of the hemiparesis or if anything else was wrong. To which I replied again that the doctors have no idea so far and that there was No Abnormalty Detected in any of the examinations, as I already mentioned several times. And that I wanted to know if she was referring to a special examination. Then, because her questions were so intangible, I added that the whole subject was too complex to be discussed in a Whatsapp conversation. To which she did not reply anymore. I haven't heard of her again since then altough I informed her on Friday that we had been discharged from the hospital. I know she read it but she did not react.

She could have simply given me a call and I could have answered her questions properly. Obviously, she is mad at me now. And I wonder why and if it would have been my "job" to call her after the MRI. I mean, I was in exceptional circumstances the whole week and I do not feel like it would have been my job to call her. If she were in hospital with one of her kids I would never expect her (or any of my other friends, for that matter) to call me in such a situation but I would always be the one to call her to show her that I care and that I understand what kind of stress she is going through right now. It just shows me again that she cannot imagine what we were going through last week.

And this is where my expectations come in again. What do I expect from my friends? I think we all expect our friends to act in a similar way we would act if the situation were just the other way round. But I know she shields herself from the bad things and I know she does not understand the situation I was in. And, therefore, she probably did not feel that it was her "job" to call me. She is one of my best friends and I just wish she would really try to get this. Our life.

I am so disappointed by her behaviour. Not becaue she did not call me but because she is mad for reasons I do not understand. But right now I just do not know how to react. I think it is highly immature to play the "who calls whom first" game but at the moment I just cannot call her because I am angry, sad, and frustrated and that would make a phone call challenging, at least from my side.

What adds up to the whole situation is that another friend of mine whom I just met last year really cared so much for us and texted frequently and also called me several times. She asked repeatedly if there was anything she could do for us and was almost disappointed when I said no. She by far exceeded my expectations, even more so if you think of the short time we are friends now. I was so grateful for her support. 

Monday, 4 March 2013

Just a short update

Today I am trying to settle into my normal routine again. But there is a lot of work to do and, therefore, I will have to keep this short.

We were discharged from the hospital again on Friday. The MRI went well and the result is that it is also NAD. So a stroke, a bleeding or a thrombus can be definitely ruled out. I am so glad about that! What is left as a possibility is that it could have been a seizure. Therefore, we will have a follow-up EEG in about four weeks. The neurologist told me that even if it was a seizure does not mean it has to inevitably happen again. Actually, it is possible that it might never happen again.

But nevertheless I am so scared because I was always afraid of the possibility of Sunny getting seizures at some point in his life. I know that his diagnosis (developmental delay) makes him prone to seizures and this was always one of my biggest fears. I try to stay calm but that is so difficult right now.

On a lighter note, Sunny is totally back to his own self again. He is the happy, funny, carefree, and enthusiastic boy he always is and for that I am so grateful. His body functions are also all back 100 %.

The rest will remain to be seen. I am already dreading the follow-up EEG right now because I am afraid of what it might unveil. So we could really use some good thoughts, vibes and prayers from you. Thank you!




Sunday, 3 March 2013

The Week In Pictures: calendar week 09/2013

I am starting a little series today: The Week In Pictures.

I know my blog does not contain many pictures because, as you may have already guessed, I am trying to keep this blog anonymously. And the pictures I sometimes would like to post just don't match the content I am writing about. So I thought it might be fun to do a weekly recap and show you what we have been up to the last seven days. Some pictures might come with an explanation, others might just stand for themselves.

Hope you enjoy it!

Quiet night at the hospital