Wednesday, 19 February 2014

The good, the bad, and the ugly.... and how I feel in general

Apart from the news on Sunny that I shared last week there are also news about me and why this blog is neglected at the moment (which makes me sad).

The good
The positive news is that I finally found a job that seems to be suitable for me. I accepted a job offer some weeks ago and will start working again on April 1, 2014. I cannot tell you how much I look forward to that! Being a SAHM mom was fine - for a few months. However, it is not the right thing for me. I know there are a lot of mothers out there who enjoy staying at home and taking care of the household and whatever they do apart from that and that is just fine. For me it is becoming more and more of a strain. I feel isolated at home. I am missing conversations with adult (and, while Sunny is at school, actually with anyone!). I do not enjoy doing chores. It is just not fulfilling for me. So this is why I look forward to start working part time again soon.

The only problem will be the school holidays and the number of days that I can take off from work because they do not match. So I have to see who will be able to take care of Sunny while I work. I will talk to the respite care we had last year but since she was quite expensive and I will need her more often than last year I need to find another solution.

The bad
Some weeks ago I had something removed from my forehead in a small surgery that my dermatologist referred to as keratoderma which means, in her words, "nothing dangerous and not medically necessary to remove, just not nicely looking". However, I have had it for two years now and the last months it started to ache and bleed and it just did not really heal anymore. So I had it removed because it started to bother me. It was quite big in size and the surgery and healing process were rather painful and tedious.

The ugly
One week after the keratoderma was removed my dermatologist called me and informed me that the lab results came back and revealed that it was actually skin cancer and no keratoderma. Ugh. I was so relieved that I insisted on having this surgery! My dermatologist was shocked because she had been 100 % sure that it was no skin cancer.

She knew, however, that I was prone to skin cancer since I had my first one at age 16 - and had it removed for the same reason, because it had annoyed me, unbeknownst to my former dermatologist that it was skin cancer either. It seems to be a typical thing with my skin that those things look atypical on my body.

Anyway, I need to have two more surgeries in March where more skin and deeper dermal layers will be removed to make sure that all of the cancer cells are removed. The wound will stay open for one week until the lab results come back to make sure the edges of the removed skin are cancer-free. If not, the surgeon will remove more skin and then close the wound either with a transplant (most like skin taken from behind my ear) or, what would be best, try to close it without a transplant. The latter is more difficult because the skin on the forehead does not stretch very much and the scalp does not move enough to close a large wound. But I would only have one straight scar instead of a round one that a transplant would produce. He will have to see what works and what does not when he closes the wound.

How I feel
I have not been feeling too well lately. I am not as resilient as I normally am, I feel lethargic, I am easily irritable and get impatient and unfair quite quickly. I do not like the person I am at the moment and I hope that my new job will help me to find my spirit again. I do not think the skin cancer thing is the reason for my low in mood but I am sure it adds to it. I would just like to sit around all day doing nothing but when I actually DO that for some time (not the whole day, mind you) I feel discontent, too.

Also, I am really looking forward to the carnival starting next week and I will see if my body needs some vitamins or other herbal stuff that can help me.

Right now I feel uncomfortable with myself and I need to find my balance again.

Tuesday, 11 February 2014

The question of Sunny being on the spectrum or not: answered.

I was absent and completely removed from everything with regard to blogging for a long time since a lot has happened over here. Tonight I finally need to take the time to start writing about it all because the heap of things I need to get off my chest is getting bigger and bigger.

Today I will start with Sunny's evaluation for a possible autism spectrum diagnosis which happened during the last two weeks.

The possibility of Sunny having autism has been brought forward by several professionals during the last years, independently of each other. There were some who were quite sure he is on the spectrum. Then there were others who were convinced he did not have autism. The viewpoints were just completely opposed. When we were in Cologne in September 2013 it was mentioned again during our appointment.

This was when we finally decided to have Sunny evaluated for autism. Not that this diagnosis would have changed anything. He is still being fostered in the way that is right for him, regardless of an autism diagnosis. But still, we wanted to know.

So we had two appointments at a facility we had already had two long stationary stays at in the past years. This is why the staff there knew him quite well and they had extensive documentation and evaluations which was a major benefit for the evaluation process; it made it shorter than it would have been at another place.

The first appointment took place together with Sunny. He had to fulfil several tasks and exersises and the way he solved them (or how he did not solve them) was evaluated. I was handed over a questionnaire for his teacher and she was asked to call the psychologist in order to speak about his behaviour at school. The second appointment was today. This time only I had to come since the psychologist wanted to know a lot of things about Sunny's behaviour, so we had time to talk about this in a quiet atmosphere without interruptions.

To make a long story short: Sunny is not on the spectrum. It was evaluated that he does have certain autistic behaviours but that they rather stem from his developmental disorder and not from an autism diagnosis. She explained that this behaviour is more of a side effect.

It was also stated that the gap in this development has widened again. He does make continuous progress but not fast enough. That was like a heavy kick in the guts. It is so difficult for me to look at him with objective eyes and when the hard, cold truths are being spoken they hit me, time and time again. I wonder if this will ever change.

I think I have never left this facility in a good mood. Every time I leave for the one hour drive home it feels as if my car is too small to contain all the thoughts, the emotions, the pain, sadness, frustration, fear, and heaviness I take with me when I leave. It feels as if the roof of my car is about to be blown off from all the negativity that surrounds me and that I so desperately want to get out. My heart is always heavy on the way home because we always leave with another painful reminder that nothing is normal and that there is a lot to worry about.

However, the long way home is always cathartic and I am glad for that. I never arrive at home as sad as I leave. The more kilometres there are between the facility and my car the more I am able to see through the negative fog. To calm down. To block out certain things. Maybe this is not the best way to deal with it. But in these moments I am just glad that I can feel a bit better again.

Last year we were accompanied by a rainbow for a very long time on our drive home. And through the tears that I cried behind the steering wheel that rainbow gave me a feeling of hope and soothing.