Is there any comfort to be had?: #LIGHTtheWORLD

1 December 2016:

The brown cabbage smell surrounded me, as I climbed out of my car, by ICA supermarket this morning. That smell is what I associate with Christmas, with particularly my childhood Christmases, since then everything was made from scratch. And Christmas Eve morning meant brown cabbage smell, one of the most traditional things to eat, in Southern Sweden. Can’t stand it myself, but the smell is divine!

This morning was a stressful one, since nothing worked the way it should have. But in the middle of this, my two youngest boys were exalted. We turned the leaf on the calendar, and the picture for this month appeared. December has finally arrived, not a day too soon, for the boys, and not only “Tomten” (Santa/Father Christmas) are watching us on the photo, but our beloved D., serving a mission for our church at present, in Wales! The boys wanted to open their chocolate advent calendars of course and I was happy to not have to have that discussion in the middle of the chaos, since their father has hidden the calendars and I know not where. But they did get to open the “Mamma Mu” calendar I purchased for this year, since she is a favourite of mine. (If you have not met her, you must look her up. A very unusual cow, who refuses to behave the way she is expected to. Always informed of her wrong ways, by her close friend “Kråkan”, a funny crow.) We did not have time to read the little book, which was found behind 1 December. Something to do, later on this rain-filled day.

Mamma Mu and Kråkan organizing Chrismas. Can it get more Swedish than this? Hardly!

Mamma Mu and Kråkan organizing Chrismas. Can it get more Swedish than this? Hardly!

Yesterday, I visited my new doctor. I have been so disappointed with the medical and health care establishment, that I have not had a blood test for two years and I have refused to go see the Chinese doctor, my health clinic assigned me, against my will. Not a good thing to not go and see a doctor or take your blood tests, when you have Hypothyroid and Hashimoto’s. But if noone listens to you, what is the point? During the summer, I changed health clinic, since I refuse to ever have anything more to do with the Chinese man, who thinks he is God. But, I still did not do anything about all my troubles. I don’t have the energy and I wanted to write down all my woes and send them in advance, before I saw a doctor, since they do not have the time to listen to you. But I never got the energy to write that letter either! That is what it is like to have these diseases! You are TIRED! But, Friday, I walked in to the health clinic in town and after failing to get any blood out of my left arm, they drained the other arm. At least that is how I reacted when I stood up and had to sit down again, from the blood loss.

And then I met with my doctor, yesterday. Don’t know what to say really. She does not want to see my symptoms as caused by the thyroid diseases. What is causing my constant anemia then? I am to have three to four iron injections via IV. She thinks that this will magically make me more energetic. And she is sending me to a gynecologist to see why I have heavy menstruations. Right! I have had that since I was 12! She is sending me to a dietician, to get help with what I can eat, since my lack of gallbladder and still having gall attacks after certain foods, has me at a loss as to what to eat. So I do not eat a whole lot. Who wants to be in excruciating pain after they have had a meal? Not me! The weight gain, which happens when your hypothyroid medicine does not take away the symptoms of your disease, is according to her, to be blamed on my age. The hair loss, to be blamed on genes. Although noone else in my family have had the problem! The dry skin and soft nails, are blamed on stress. So is the loss of words and loss of sleep at night. She feels I need a holiday. Haha, is my answer to that. So, I feel depressed after seeing her, another symptom by the way. And I did not even get to tell her all the other symptoms which are sad or depressing to live with. And in the middle of this, I have promised to take on the challenge of not just thinking about myself this December, but to spread the light, like Jesus of Nazareth did. (Boy I hate using that name for him! The older I get, the more I feel it is wrong. I would not want anyone to distort my name in another language, or change it to something else, to cut off the roots from where I come from!) suggested that one could spread a video, on social media. Or pray in order to see the needy. Can’t remember the third, thanks to my hypothyroid! Oh wait, no according to my stress level. There was a long list, under the three simplest suggestions, and I decided to choose a challenge, which I actually CAN do. But, there is always a risk of alienating people and readers, by mentioning the forbidden words: faith, hope, prayer. Especially in the country I live in. Taboo! But, I have promised to do this, so here goes. I will share a story, which in a way, I do not want to share, but I am doing it, to give comfort to others, and for my children to read one day:

In 2008, I was once again delighted to find out that I was pregnant. It was the third time, we tried to have another daughter, me feeling that a daughter was missing in our family. As usual the morning sickness was overwhelming, lasting all day and night. But the hope, for another little being joining our family, made every suffering worth it. And the thought of finally receiving that longed for daughter, also made everything bearable, because I was SURE this time, that it was a girl.

Time went so slowly though. I could hardly wait till week 17 of the pregnancy to come about, when we would finally have confirmation of our hopes, dreams and intuition.  But week 17 finally came around, and like all expectant mothers in Sweden, I went to my ultra sound. We did not have any babysitter available, so D. and E. had to do their best in the waiting room, looking after F., “Kitty” and “Boo”. My husband and I walked in, I laid down on the bed and the midwife started her examination. Soon it would be revealed, the gender of my baby, if the baby was cooperative, showing the stuff. The midwife, finding out that we had four boys and only two girls, said “Well, then it is time for a girl now, isn’t it?”.

And then we saw a little penis! My heart sank, my husband squeezed my hand, and I wanted to cry. But soon, I realized that the midwife had got a very serious look on her face. She was not the happy person anymore, that she had been when we arrived. She asked me why I had not had an amnio done. And I answered “No matter what, I could never kill my baby, so why would I have an amnio done? Risking a miscarriage for what?” She stayed silent after that and then she finally said something: “There is something wrong with his kidney! It is way too big.” She showed us, what she was looking at, and the right kidney was huge compared to the little speck of the other one.

We walked out numb, from the room. Pictures of the baby in the hand, where you could see both penis but also the big abnormal kidney. When I saw my children, they started running towards me, and I guess I looked very happy, when I saw them, because my oldest daughter and D. blurted out: “So it is a baby sister!”. I hugged them all at the same time, feeling so happy over having them and being their mother. I cried and said “No, it is a boy. And he might not live to be born!” Because those were the first news we received. That, and the fact that I needed to come back, to see an expert.

Every two weeks, for the rest of my pregnancy, I had to go to the ultra sound department, in order for them to look at my baby boy and measure his right kidney. There was talk of him not living till birth. There was talk of him having to come out early so that they could operate on him or just to save his life. There was talk of putting a pipe in through my back, through my womb and in to his kidney, so it could be drained of fluid. Every doctor, being silent while examining his kidney via my growing belly. Me laying there on the bed, vulnerable and scared. And then trying to pump the doctor for information, wanting the worse possible scenario, in order to be prepared.

I can not remember a lot of what else went on during that pregnancy, since his well-being was constantly on my mind. I felt sick to my stomach, every time I entered the building for the ultra sound and I did not feel much better coming out. And then, in the middle of the summer, about a month and a half, before I was to give birth to him via C-section, I decided to pray. I did not pray for my son to live. No, I knew better than that. I prayed for the courage to face everything which lay ahead of me. I prayed for strength to accept what was to come. But most of all, I prayed for being able to stop worrying about matters which I could not do anything about. When I prayed in this manner, I finally felt a calm come over me. There was finally peace in my mind. I knew that there was nothing I could do, except get through my pregnancy.

The baby was pressing all my intestines and stomach upwards and every week, I was in and out of the hospital with gall stone attacks. They could not give me anything for the excruciating pain, because of the baby. I have never been good with pain and I was scared, but somehow, my thoughts were always with him. My little fighter in there. We called him “Sparky” after Captain Speirs, 101st Airborne, Easy Company, because he was totally “wild” in my belly and because he reacted to everything, noise, light, music, touch… We bonded he and I , in a way that I have not bonded with any of my other children, in utero. We got through it together, he and I. Both fighting for our survival. And somehow, after my sincere prayer, I knew that I would hold him one day. I could even feel his personality. That he would be the sweetest little angel, loved by everyone for his sweet disposition.

How did it all end? You really want me to tell you?

He was taken out by C-section, 14 days before time, because the strain on my gallbladder was too much and they needed to see what was going on with his kidney. As soon as he was born, he was put on medication, so he would not get an infection in the right kidney. Two months later, after lots of painful tests, he had to have surgery. But the surgery was not a success. He was born with an extra blood vein, which supplies the lower part of the kidney, with blood. So the surgeon could not perform the surgery, the way she usually did, but had to put together an emergency solution. And then they overdosed him on paracetamol and there was an infection, which they think ruined the kidney. BUT today he is a happy little boy, who is in no pain at all, even though his left kidney is doing 87% of all the work, and thereby has grown abnormally large. And his right kidney, which is doing 13% of the job, can not empty properly, so it is as big as the left one.

In 2014, this sweet little angel of mine, was diagnosed with autism and severe language disorder. But I have never REALLY worried about him, since that day I prayed about him and my worries. I have accepted one thing after the next concerning him, with the attitude, one day at a time. Every thing which he has accomplished so far, has been a plus in my book and has made me happier than happy. He is a happy, loving boy, who learns things every day. And to be honest, I do not really think about his sick kidney anymore, since the autism overshadows everything. But even there, I can feel that autism is not the end of the world, when it comes to him at least. You have never ever met a more loving, sweet boy than my “Gubby”. Yes, a child which always needs help, a child with a hundred questions, a child which has a very short memory, but a child I would not want to live without, for anything. His real name (I protect my children in social media, from being exposed) which I chose for him, means LOVED. And loved he is, by everyone who meets him.

(Yesterday, they had a Christmas Theme day at his school and they got to make a lot of ornaments, a ginger bread village and dance around the Christmas tree. His personal assistant has started to send me photos of what he does in school, since his memory is so short that I can not ask him “What did you do in school today?” and expect an answer. Instead he says “Never mind that!”. Because he does not have the language nor the memory for certain things. But the photos help him to explain and triggers the memory! I wish I could have shared them here, but I want to protect him. I will share one thing he made though!

Traditional Swedish Christmas ornaments: "Oh, Gubby, what a nice looking orange!" (Usually the cloves are put all over the orange but my son prefered a line, obviously!) - The sticks really hurt! "What? Sticks?" commented brother "Kitty". - Yes, they really hurt my fingers! Poor "Gubby", and yet he did his best to make pretty ornaments like everyone else at the school. My little perfectionist! (See tomorrow's post!)

Traditional Swedish Christmas ornaments: “Oh, Gubby, what a nice looking orange!” (Usually the cloves are put all over the orange, but my son prefered a line, obviously!) -The sticks really hurt! “What? Sticks?” commented brother ‘Kitty’. – Yes, they really hurt my fingers! Poor “Gubby”, and yet he did his best to make pretty ornaments like everyone else at the school. My little perfectionist! (See tomorrow’s post!)



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