Friday, 5 September 2014

Pain and healing

Today was our last speech therapy appointment for some months to come. We will now start a therapy unit of OT with a focus on sensory integration. Our SLP says that she needs a new basis for commencing her therapy and sensory integrations shall provide this basis. She will be our therapist again after this break, thankfully!

We spoke about many things today that were on her mind, like Sunny's talker and how we get him to use it more at home. Or how exhausting it must be for me to read books to Sunny ALL. DAY. LONG. every day and that I probably will be glad when school starts again the week after next week. And yes, I am exhausted and will be so glad when we have our regular schedule again. I know she thinks about Sunny often and how she can help him to improve his communication skills. She also made him say "Määäääh" for the first time.

This woman has become an important person in my life. She always gets me immediately and sometimes she did not only do therapy with Sunny but she also helped me in so many ways with her insight, her experience of life and her empathy that she became a very valued person for me.

So today when we parted and we had to say good-bye (and, if you have been following this blog for some time, you know what is going to come) my eyes welled up with tears.

SLP: Oh, don't cry! We are going to see us again, remember?
Me: Sure, but you know me, I cry all the time!
SLP: So you need another holiday after school starts again!
Me: This pain is rooted so deep inside me that no holiday will ever be able to heal it.

Her looks spoke more than words.

On the way home, in the car, I thought about this. Why do I always cry in situations like these? When someone tells me that I am an awesome mom and that they do not know if they could do it. When they congratulate me on things that are just normal in my opinion (like taking care of my son the way I do it) but obviously a big deal for anyone else. It always feels weird to me because I believe that what I do is just natural for any mom (but I am aware it is not). When friends and strangers are kind.

I am not sure. Maybe it is because it always makes me aware of how our lives are NOT normal when it is MY normal and the only thing I know. Maybe it stirs up emotions that I try to keep under control. I think of myself as a rather positive person but my heart is sometimes so heavy and moments like these just make it spill over. Sometimes just one word is enough to make it overflow or burst. 

I also thought about that second last line from "Welcome to Holland" by Emily Perl Kingsley that says

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

Is that really true? Will this pain always be there? Deep down inside me somewhere, lingering, always sitting in a corner of my heart, waiting to emerge on a suitable (or not so suitable) situation? Will I still feel this pain when I will be 50, 60, 70? Will it fade eventually, become softer and not as sharp as it still is sometimes?

I do not feel it often, but I know it is there because it reminds me from time to time that it is still with me. Maybe it will change over the time and grow with me as I grow from this experience that is our life. Or maybe it will stay as it is forever.

Either way, there is just one thing I know: I love Sunny more than anything else and that helps me overcome this pain every single time. This love heals my heart.




Wednesday, 13 August 2014

Houston, we have a sheep!

Recently our SLP has been working on animal sounds like frog, cow, sheep, cat - stuff like that. She is using a mixture of Castillo Morales (more or less a special massage of the oral muscles) and TAKTKIN (which derives from the American PROMPT therapy and helps the patient by simulating how certain sounds are being made) in order to help his mouth form different sounds. I was going to link the two therapy methods but I could only find German links, sorry for that. 

She has already been able to make him do the frog sound (QUAK) some sessions ago with the help of her hands. And he was the happiest frog ever heard! It brings him so much joy! Today when we walked down the stairs to her office he tried to do the frog by himself and then laughed.

(Credits)
 Today they worked on the sheep. Sunny tried really hard and both of us showed him how he had to form his mouth. She used her hands helping him to adjust his mouth and lips while I slowly made the sound and showed him my mouth movements. He did pretty well and we were quite content. When the session was finished the SLP and I talked about various stuff while I packed up our belongings when all of a sudden we heard a loud MMMÄÄÄÄÄHHHHHH! Our heads flung around and we saw Sunny, his face beaming with happiness and pride!! We could clearly see that he was so very happy that he had managed to make the sound correctly - and all by himself! We cheered and applauded him, I cuddled and kissed him and he jumped up and down from excitement.

When we returned home Sunny proudly and happily demonstrated his dad the sheep sound several times. And he even managed to do it correctly two or three times.

It is such a big deal for me and I am really happy how well he did! We will be practicing the sheep a lot in the future!! Yaaaaay!



Gentleman of the year

Just a short post today. This is one of my favourite songs right now because it makes me happy.

And, let's be honest, I am sure everyone of us would just love to dance in public without even caring for a second what it looks like! ;-) Just feel the beat, let the music warm your soul and oblige to whatever your feet, legs, and arms tell you to do!


Enjoy! :-)



Monday, 11 August 2014

A detour

This post was planned to go live last week. I had already written most of it on Monday and decided to finish and publish it on Tuesday evening. 

Then we took another detour. I would love to say it was unusual but it was not since Sunny had another concussion last week and we stayed another two days at the hospital. It was the second concussion this year and the fourth in his life. The last one was at the end of May this year. It is funny how the nurses all know us and greet us almost excitedly when we walk in. Can I just say that I am sooo fed up with all of this hospital stuff??

Here is the short version: I was about to make Sunny ready for bed and decided to open the windows in this room in order to ventilate it before he would be going to sleep. I turned my back to him for all of about three seconds when I heard a loud noise followed by immediate crying. As I turned around I saw him lying next to his changing table with his face on the wooden floor. I am not exactly sure what happened but I guess he tried to climb up the changing table and crashed while trying.

So I scooped him up, turned him around and saw blood in his mouth. He had hurt the inside of his cheek and was bleeding. And he was crying. Since his pain tolerance level is rather high I always know that it really hurts when he cries. The right side of his face was red and already turning a bit blue so the impact must have been quite strong. I consoled him but he was back to his quirky self soon and seemed normal at first.

After some time I put him to bed and snuggled up to him when he suddenly started yawning. However, he was yawning every ten seconds and I think about ten times in a row. That was when it dawned on me that he probably had another concussion. I am a concussion expert now with four of them so I know the signs. I went downstairs with Sunny to tell my husband about the accident and that I was presuming he had a concussion. I told him that I was thinking about going to the hospital.

Sunny, however, seemed quite normal again at that moment and had stopped yawning while I was carrying him so we decided to wait a while and see how it all develops. When we returned to his room he did not want to lie down anymore but instead sit on my lap and snuggle close to my chest. I presume he was already feeling sick by then.

When he fell asleep sitting on my lap (Sunny NEVER sleeps outside of his bed!) and even seemed to become unconscious at some point everything was crystal clear so I called my husband to take care of him while I packed our hospital bag. While I was packing Sunny threw up all over my husband so I hurried as much as I could and took him to the hospital. It was after 23:00 when we could finally move into our room and crash in our beds. We were both exhausted.

So, that was that. Bummer.

And this is the post I had prepared to publish earlier last week. I just posted it some minutes ago where it belongs, date-wise.




Tuesday, 5 August 2014

Farewell, dear first grade and dear class! :-(

Last Wednesday was Sunny's final day of school before the summer holidays.

It was a sad week because we had to say good-bye to Sunny's class and almost all his fellow students. One of them is moving up to a new class (he is a lot older than the rest of the kids and will be in middle school from now on). One of them will be leaving the school in order to attend an inclusive classroom in another town and facility.

Sunny's most important friend will be leaving his complete home life and environment behind to live in an orphanage/children's home and this fact is breaking my heart so much. What is even worse is that the children's home is roughly two hours away so we will not even be able to visit or meet him somehow by chance. Sunny's teacher could not go into detail about the reasons but she mentioned that the social surroundings and situations of the child were very difficult and that he will be staying in the home for a longer period of time. When she told me about it she had tears in her eyes and I know how hard it is for her, too. She is such a loving and caring person, I can totally see why it hurts her as much as it hurts me (or probably much more, given that she saw this boy every day). She pledged for a home in the same town that Sunny's school is in but the parents and the youth welfare service mutually decided for the other home.

So there are only Sunny and another boy left of the initial class and with no new students to enter elementary school this year Sunny and the other child are going to be divided to the other two classes left in elementary school.

Sunny's aide will also be leaving which is another hard blow that we have to stand. Sunny and him shared such a strong bond, words were unnecessary between them. They were very, very close and did so much together. On Mondays the class was usually taught in the woods and outside and Sunny and his aide loved to saw, hammer, and drill wood and make crafts. His aide was tireless when it came to working with Sunny and I guess he enjoyed it as much as Sunny did. I know he will be greatly missed by my son.

I am very grateful that he will keep his loving teacher for most of the days in the new class though. She will be in another class for two mornings a week but otherwise will be in Sunny's class together with another teacher. I thank the heavens for that! It is the only good thing about all the changes coming in the next school year.

The new class will have seven instead of five students and I wonder if or how this will affect Sunny's attention span and capability to learn. I hope it will not affect him in a negative way.

So last week on Monday we had a final farewell barbecue and spent some time together for the last time. The parents were invited, too, so it was a bittersweet experience and I shed quite some tears as you can imagine if you have been following this blog for some time.

I just hope that we will be able to keep in touch with the boy that left for the inclusive classroom since Sunny likes him a lot, too. 

I am a bit worried about how Sunny will be able to cope with all of these changes. I hope he will be as happy in his new class as he used to be. He loves to go to school so much, it would be such a shame if that changed. Just imagining it makes my heart heavy.

For now, however, we will try to enjoy the summer holidays that lie ahead of us and I will try not to be consumed by negative thoughts about the coming school year. I will cross that bridge when I get to it.





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!