Friday, 4 July 2014

Two insights

I spent the past weekend at my parents, together with Sunny. While I was there I had two insights that made me think and ponder since then.

The first one is that Sunny's disability is obviously getting more visible or apparent now. For many years this was different. I have always wondered what other people see when they look at him and how others perceive him. In the past a lot of people did not realise that he was different because his disability is invisible. Now this seems to change slowly. It is not his appearance but rather his unusual behaviour and his inability to speak that makes people realise that he is different. We were at the swimming pool together with my mother on Saturday morning where a group of three kids with special needs and their caretakers were, too. Before we were about to leave one of the caretakers approached me and wanted to know when we were going to leave because apparently there is only one key for the changing room designed for people with special needs and they wanted to make sure that we would not leave at the same time. I did not even know that a special changing room like that existed so that was no problem but I was a bit surprised because she had only seen Sunny and me interact in the water. Sometime earlier my mother got into contact with a stranger and after they small talked for a while he asked her about Sunny, what kind of special needs he had and so on. We also spoke to an elderly woman who also mentioned that she had experience with disabled kids. All of them were nice and kind but it got me thinking because those encounters were so heaped and happened within two short hours. What is also remarkable is that all of them had had some kind of boundary point with disability in general. Maybe others do not dare to talk to us that easily or they do not perceive it yet like experienced folks do.

However, this is a new experience to me. On the one hand it might make it easier in the future to deal with the stares because people will realise that Sunny does not behave strangely because of bad parenting but rather because he has special needs. But on the other hand it is another difficult step I have to take on the road to acceptance. Until now it was still possible to disappear in the crowd and not stand out that much. Sometimes I think it is easier to have a diagnosis immediately after birth. That does not mean that those mothers do not have bad days and feel pain for various reasons and because society behaves horrible, too. It is so hard to explain what I mean. For me the process of acceptance and learning to deal with it is so long because it happens gradually since Sunny was born. I have to adapt to new situations and adjust my way of dealing with them constantly. I guess this will still take some more years.

The second insight is that I do not want to talk about Sunny's special needs with everyone. We had a class reunion while I was at my parents and one of my oldest friends (whom I spent my entire schooldays with, starting in first grade) and I had a long talk. We had not seen each other for a very long time and updated each other. Because he is a doctor now he asked me why we were at the hospital frequently (we are friends on Facebook so he knew) and when I told him that Sunny has special needs and went into detail I saw pity in his face. He touched my arm and said that he was so sorry. However, in my opinion there was no reason to react like that because I talked to him in a normal tone, no tears, just delivered facts in a normal way. I said that he did not need to be sorry and that we were fine but his pity did not vanish.

Do not get me wrong, I am not ashamed to speak about my beautiful son and his special needs. I am so proud of him and I love to show off his gorgeously beautiful face. I love to talk about his contagious laughter, his wit and his curiousness, his brilliant memory and the way he speaks without saying hardly a word. What I do not want is others pitying me for him being just him.

PS: Happy 4th of  July to all my Amercian friends and readers! Enjoy the day and have fun!

Thursday, 19 June 2014

Second birthday

Today marks the 6th anniversary of Sunny's major surgery. For privacy reasons I am not going to disclose what kind of surgery it was. All I can say is that it lasted six hours, that Sunny lost a lot of blood, that two surgeons were needed, that it affected a very sensitive area of his body, that he spent four days in the ICU afterwards and another three days in the regular hospital ward, that I had never heard of a surgery like that before (but later met other kids that had the same surgery and that it is not as rare as I thought - but still something most people never heard of before), and that it scared the hell out of me.

I will never forget how I carried him all the way through the hospital in my arms until we reached the patient air lock. I tried to be strong so that Sunny would not be scared but I failed miserably and cried. He started to get upset, too. Then the anaesthesiologist approached us and gave Sunny his sedative. Within two seconds he got completely limp and heavy in my arms. I was not prepared for it happening that quickly and I was almost convinced that he had died that very second. It sounds completely ridiculous writing it now but at that time I did not think, I just felt his body become heavy and limp and switched into panic mode. The anaesthesiologist said "we need your child now" but I could not give him away. He repeated "we need your child now" over and over again several times until he finally took him out of my arms and softly placed him on his bed. I will never forget the sight of his legs dangling lifeless in the air when he took him out of my arms. A second person lifted them up while they lay him down. Then the air lock closed and I fell into my husband's arms and cried hot tears.

The minutes turned into hours until we were finally told that the surgery was over and that he was brought to the ICU. We had to wait another hour until everything was in place there and we could finally visit him. I will never forget the moment when I saw him again after his surgery. I was so glad he was alive!!! He looked so beautiful and peaceful because he was still asleep. 

I will never forget this date and although the surgery was not life-threatening it was a very difficult, scary one. I will be forever grateful that everything went well and I celebrate this date every year. This year is no exception. Here's to Sunny's successful surgery! 

Wednesday, 18 June 2014

A magic night to remember

We attended a special event recently: the so-called Dreamnight at the zoo. It is an annual event, taking place preferably on the first Friday of June in zoos around the world. This special event was invented for children with chronic illnesses or disabilities and their families. It was founded in the Netherlands in 1996. The employees of the zoos dedicate their time without any reimbursement to make magic happen for all the kids that get to visit the zoo.

It was the first time that we were able to get an invitation since they are very often handed out to self-help groups (which we are not part of due to our lack of diagnosis) or a few special hospitals (none of which are ones we are treated at) so it is almost impossible to get an invitation if you are not part of one of these institutions. Luckily for us, a friend of mine was there to make a performance and she was handed over three invitations to pass to someone else. She knew that I had been trying to go there so she gave us one of them.

On the day of the event the regular visitors of the zoo are requested to leave earlier. Before we got admittance to the zoo there was a performance with drums and dancers in front of the entrance which all of the kids and parents really enjoyed. Then the gates were opened and we could go inside. There was so much to do and see that we almost had to hurry to get to do all the things we wanted to do.

First of all we started with feeding the monkeys. We were given pine cones which we stuffed with popcorn and various other foods. We sprinkled honey over it to make the food stick and then we threw it into the compound. The monkeys loved the pine cones.

On our way to the monkeys we were able to pet chickens and chicks. Sunny was very anxious and did not really want to do it but he was fascinated at how the chicks were held by the zoo personnel and talked about it a lot in his own special way.

We went on to do some pony riding. Since the ponies are at the other end of the zoo and everyone started to visit the animals and attractions near the entrance we were almost alone. Sunny, being the hippo therapy champion that he is, excelled at riding the pony and got a lot of compliments for his good sitting posture. He could do several rounds because no one else was there and he was very happy about that.

Right next to the ponies were the goat. There was a time when Sunny was eager to pet the goat, he even went so far as to cuddle with them and lay his head on their backs or holding their cuddly tails. This time he was reluctant so we did not force him to get close to them.

We went to see the cows with their calves and the big pigs.

A highlight certainly was feeding the giraffes. We were given large tree branches with lots of leaves on them and got to stick them through the fences where the giraffes eat greedily. Sunny enjoyed this so much, he squeaked with delight and could not get enough. I mean, when do you have the chance of getting so close to those majestic, beautiful animals? When they stuck their mouths and noses through the fence you could even pet them if you were brave and quick enough. It surely was something really special.

On our way to the lower part of the zoo we watched the feeding of the vultures and also could peek inside the ice bear cave.

After all those exciting things we took a break and had dinner and beverages. Everything was free of charge and a band played while we sat outside and enjoyed our food. Sunny, always acting like a camel when it comes to drinking, downed all of our cups so we had to go and get more beverages for ourselves - and for him, of course.

After feeling rested and full we went on to see the feeding of the sea lions. This is something we rarely miss when we visit the zoo. Sunny loves the sea lions and is actually quite good at imitating their sounds. We love how he does that and ask him to do it very often. It is just so lovely!

We moved on to get a chance to pet a penguin! That was just cool. It felt very soft and fluffy (like a bird) and his wings were rather rough. Sunny even dared to come close and pet it, too.

Then we went into the aquarium. Sunny loves to watch the fish in their tanks and ran from one tank to the other. The bigger the fish are, the better. He found a huge tank with huge fish where he placed himself in front of and just enjoyed watching them.

After some time there we moved on, Sunny and my husband paying a visit to the crocodiles while I stood in line to pet a snake. Touching a snake is something that I always wanted to do so I grabbed the chance. It was a rather small colubrid (no huge constrictor snake, lol) and I was impressed at how muscular it felt and how it wrapped itself around my wrist. Its skin felt smooth and sleek. It was awesome and I am glad I took the time to wait for this experience.

On our way out of the aquarium we got the chance to pet a large koi carp which was very fascinating for Sunny. He pet it several times and could have done that for the rest of the night, I think.

The Dreamnight was slowly coming to a close and when it started to dawn we all went outside and watched a fire show. Sunny was mesmerised!

On our way out each child was given a small present.

In the forefront of the event I was wondering how Sunny would handle being up way past his usual bedtime but in the car on the drive home he was the one being the fittest of us three. He sat in his seat and was still fully awake and excited while my husband was snoring away next to me.

It was a very special event that we will surely not forget. It felt good to be surrounded by others who share our experiences and challenges. There we no stares, no awkward feelings. We were part of the group and not the outsiders. That felt really good. I also love how the staff at the zoo bent over backwards to give our kids such a special night that I am sure everyone enjoyed as much as we did.

Thursday, 12 June 2014

Teething problems: I thought we were done!

I should have known better than to announce in my last post that Sunny is fine - because this has changed for the worse in just a few days.

Since Sunday last week he has not been feeling too well. We had a heat wave here with temperatures up to almost 40 °C and I thought he was just feeling miserable because of the weather. On Monday it got worse. He was whiny, dispirited, grumpy, tired, and clingy the whole day. Monday was the hottest day here. He asked for his favourite drink (milk with water) frequently throughout the day but only drank one or two sips every time I gave him his bottle which is very unusual; he normally drinks large amounts of his milk drink. On Monday night when I wanted to brush his teeth he started crying and put his finger in his mouth. I looked inside with an electric torch and saw that his upper molars are coming through, both almost at the same time. The one on the left side already broke through a bit; the one on the right can already be seen shining through his gums.

Since then he has been refusing almost any food and, what is worse, also reduced drinking a lot. Which is not good at all in the middle of a heat wave. It got worse every day and yesterday it was so bad that I took him to see our paediatrician. He has so much trouble swallowing that I was sure he has strep. But he does not have any kind of infection. She checked his ears, lungs, stomach, throat - everything is fine. She even did a blood count to see if his infection markers were increased, but they were not even a bit elevated. However, yesterday he already showed signs of dehydration so I have to be careful and bribe him into drinking as much as I can.

However, he just is not his usual funny and happy self and that breaks my heart. I see how miserable he is all the time. It is a constant state he is in at the moment and I am so sorry for that. I wish I could help him bear the pain. So today I decided to have a dentist check his teeth to see if there was anything else apart from teething going on but she told me that from a dentist's point of view everything seems to be normal and that she cannot help us.

The only thing I can do is ease the pain with medication and hope that it will be over soon. Given that it already lasts for almost a week and the teeth still have a lot of work to do until they are finally all out does not make me really hopeful that it will be over soon. It is hard to see your child cry when he wants to eat or drink but is not able to because of the pain. That makes my maternal heart break over and over again. The nights are also horrible, he wakes up almost every hour and I am so very tired already.

I have never experienced anything like that in his history of teething and I never thought his last molars would bring that much pain to him. He always had painful times when his teeth came but it was never that bad. Well, you live and learn.

Tuesday, 3 June 2014

Coming home

It is difficult to pick up this blog where it was left after such a long absence. 

The truth is, I also did not really know what to write. I feel like being stuck in a tornado since last winter and do not know how to get out. But nobody wants to read my constant whining about that. So I was unsure whether I should even return or just give up blogging altogether. 

I was completely away from the screen which also means that I stopped reading blogs in the last months. It was all just too overwhelming for me and I needed to step back and try to balance my life (which I am still struggling with). I did not even check my e-mail account (the one that is connected to the blog). It was simply not possible for me. Sometimes I wonder whether I am (or was) on the verge of a burnout or/and depression but I know that these are severe diagnoses and I am very cautious using those terms.

However, I do want to connect again with my fellow bloggers and friends but I also need to concentrate on the most important ones for me. Otherwise it will quickly become too overwhelming again. 

Apart from my new job which is very fulfilling but also very exhausting, and caring for Sunny there are other issues in my private life that need my attention and draw a lot of energy out of me. I rarely get time to relax lately, with evenings filled with things that need to be done and that I did not manage to do during the day. The Pentecost holidays (2 weeks) are just around the corner, allowing for even less time than usually. I finally found two lovely and caring daytime nannies for Sunny but that means that I will have to take him there and pick him up again each day during the holidays when normally he rides the bus to school. 

But I need to stop here and now because I start whining again. Everbody’s life is busy, I know that. So I will just leave it at that and move on.

Here is what you probably want to know: Sunny is fine. 

Apart from the fact that we spent the weekend before last in the hospital due to another concussion he got while he bumped into another kid during recess and fell backwards, hitting the concrete hard with the back of his head. The teacher called me and told me about the accident while I was still at work. But he seemed to be doing okay apart from being more snuggly than usual and she told me she would monitor him closely and get back as soon as this would change. An hour later she called me again, telling me that he needs to be checked by a doctor because he was not being himself and that he was so tired. When I heard that I was already 80 % sure he had a concussion so I left work early and drove to his school to pick him up. On my way there she called me again and told me she just called an ambulance. She sounded nervous and worried and hung up the phone without any good-bye. That was when I got worried, too, and I drove as quickly as I could. When I arrived at the school it was time for all kids to go home so the whole schoolyard was full of buses – and the ambulance. On my arrival I was immediately guided into the schoolyard and as I got out of my car I already heard Sunny screaming inside the ambulance. I rushed to find him there with his sweet teacher who tried to console him. He was very scared and in bad shape. He did not feel well, I could tell that immediately. The teacher informed me that after our second phone call Sunny’s left arm suddenly went limp (fortunately it only lasted for a few minutes!) and she was afraid that he might have had another seizure so she called the ambulance. 

The paramedic told me that Sunny needs to be checked in the hospital and that the hospital staff already waited for us. My husband was away for work and so Sunny’s kind teacher offered to drive my car to the hospital (which is half an hour away) so that we would have clothes and everything with us for our hospital stay. She said she would somehow manage to get home again. It was the sweetest thing she could have done for us and yesterday I brought her a beautiful flower bouquet to thank her. The car was packed because we had planned on visiting my parents for the weekend. So we had everything we needed with us.

On our ride to the hospital Sunny fell asleep on my lap, then he startled and cried because he probably had a headache, then fell asleep again. When he heavily threw up on me it was clear that he had a concussion. 

The hospital staff knows us already and we were greeted by the nurses like old friends. The paediatric clinic had just moved to a new building so we got a brand new room with a gorgeous view which was the one thing that made it a bit bearable.

Luckily, no second seizure was diagnosed which was a huge relief for me. I am still always very worried about that. Our latest EEG in April remained unchanged and since Rolandic epilepsy usually does not go away before puberty I do not expect it to change in a positive way before Sunny gets older. The good news, however, is that it also did not get worse and if the next EEG will be the same our neurologist told us that one control EEG per year would be sufficient. And this is great news!

Another thing we accomplished in the week before we went to the hospital was that I finally managed to wean Sunny off his pacifier. I know, he is much too old to use a pacifier, but it was always so difficult to try and he only used it for falling asleep. I always went into his room when he was sound asleep and took it out of his mouth. Anyway, one day I just decided that it was finally time to get rid of it completely and so I just did not give it to him. When he started crying and demanded it I told him that his friend J from school was such a big boy and that he surely did not us a pacifier anymore. He seemed to understand because he stopped crying immediately and accepted that. It was such an easy transition, I never would have imagined that and I was so glad that it went that smoothly!

Saturday, 22 March 2014

... and my heart went awwwww!

Today there was an event at Sunny's school in order to raise some money for the kids. Sunny did not want to come along but since I had made a cake that I had to drop off there I went alone.

After I handed over the cake I looked at the beautifully handcrafted decorations that were for sale and decided to say hi to his former kindergarten staff. I found them all together in one room where they waited for the kids to do crafts with them.

They were really happy to see me and we talked for a while. It was so good to see them again and I felt very comfortable.

Before I left I spoke to the lady whom Sunny had had the closest bond with. They were so very close back in the days and it was always clearly evident how much Sunny loved and trusted her and also how much she loved him. She was always his go-to person where he felt protected and comfortable, safe and secure. I asked her how he reacts when he sees her now and she told me that he still comes over during recess when he sees her and that she even gets to hug him. She is so impressed with how much he has developed since he left kindergarten last summer and how he has transformed into a small school boy. She was also impressed by how he moves along now during recess, paying attention to the vehicles like tricycles that cruise across the playground. When she was still responsible for his safety she said she was always afraid that he would get run over because he never paid any attention to anything or anyone and now, while he is still accompanied by one person, he stops when a vehicle approaches and is much more in control of the complete situation.

And then she told me how much she misses "her Sunny" and that he really was such a very special boy for her. She said that anyone just has to love him because he is such a tender, darling, and kind child. And she told me how glad I must be that he is my kid and that I am so very lucky to call him mine.

And that was when my heart went awwww and my eyes got all teary. <3 It makes me so happy to feel that someone else is that much in love with my beautiful boy, too. 

PS: I will share the details of where I have been lately in the next post which will hopefully happen soon! Thank you for bearing with me although I have been absent. It means a lot to me!

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.