The life

Ég skrifaði litla grein fyrir blað downs félagsins í flæmska hluta Belgíu og kom hún út núna í desember. Ég skrifaði hana á ensku og var hún svo þýdd, nokkrir eru búnir að biðja mig um að leifa sér að sjá svo ég ákvað að pósta bara ensku útgáfunni hér. Þeir sem hafa fylgst með okkur síðan ég byrjaði að blogga hérna kannast nú við þráðinn :) 

The life we live is what is normal to us. It might not be that normal to other people but this is what we know as normal. We do not live the typical 9-5 life routine with weekends off and we move quiet a lot between countries. We try to live quiet an organized life in all that uncertinty and I would think that we are quiet well prepared for all the surprises we have to deal with in our “normal” life. 

In 2007 we had our first child, our daughter Andrea, we lived in London at that time. Since then we have moved between 3 countries and life has changed a lot. Not only in ways of changed living experience between countries also we had our 2nd child. Nothing could have prepared us for the birth of Viktor, we went to the hospital for a check up but did not return home like after every check up. Viktor was born 8 hours later 4 weeks premature and the doctors told us he had down syndrome. The world fell apart, what, why and how.....Down syndrome? Next weeks went into a bit of a blur and getting to grips with everything. In the middle of all the adjusting there came a new team... not in Denmark where we were living but in Belgium. 

For the first time in our lives together there came a new question when deciding if we should move, How is the health care system in Belgium. And the important question how is living in Belgium with a child with down syndrome. After a bad experience with the Doctors in Denmark, lack of the human touch and strange explanations we had decided that nothing was going to stop us continuing living our “normal” life.

We were driving home from a hearing test when we first heard about the possible Belgium move..... we were so happy because our little hero had such a good hearing. When Oli got a call from his agent talking about Zulte Waregem... in my ears it sounded russian.... We smiled happy about our little hero and laughed about the funny names on the teams who liked Oli. 

Next weeks continued in the settling, crying and getting used to everything. Also we took the decision to move... it was not a difficult decision because I was certain that nothing around children with downs syndrome could be as bad as what we had experienced in Denmark. 

Viktor being 3 months and Andrea little more than 4 years we packed our things and drove to Belgium. We were very well welcomed and I saw pretty fast that Belgium people like to organize and be organized;) It was good for us and exactly what we needed, we needed a good plan. The team doctor and his assistant Ilse helped us getting into everything with Viktor. We got a really good feeling from the start, we had made a good decision. The confirmation on that good feeling we got was when we walked into UZ Gent. Ilse had booked us in for an appointment in the down policlinic and there we met a good doctor. We had heard that Viktor was strong and we thought he was just the best but the feeling when the doctor was examining him and Viktor grabbed her fingers and pulled himself up and she said... wow he is strong. From that moment the good feeling came over us and it only became stronger. The doctor explained everything for us how they do things here in Belgium how and when they check certain things and in the end of the medical conversation she gave us the Downpass. There the strong good feeling just became confirmed I felt like I was handed the bible, some guidance and it was going to be alright. For the first time since Viktor was born we got some proper explainations, answers, a plan and guidance. Everyone who have children with some limitations know how important that is, so you do not feel like you hang in the free air or so you feel like there is something which is tying you to the ground.

It did not only end there... we also got to talk to social helper to help us find out how the administration worked in Belgium. So we met a very lovely girl and she explained everything and helped us come in contact with DeTandem. If we thought we were fine before, everything just became even better when we started to get there support and we owe them many gratitudes and thanks.

From our first appointment in Gent and until now we have experienced how good the system in Belgium is for children born with down syndrome but we have also got to see the not so good side of the system. But all countries have flaws in their systems that is sad but true. 

The hard decision we took when we decided if we should move to jet another country with our son who has down syndrome or if we should put a stop on our “normal” live and move to Iceland where everything sounded so secure and good has certainly paid off for us. As you know you always think everything best comes from your home country but our experience here has even been better than we ever hoped. And what we never dared to hope for is that we know that we are even getting better service sometimes than we would get in our good Iceland. :) But where ever you are you always have to continue the journey of life, fight for your children and live your life to the fullest.

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GJÖF LÍFSINS

Lífið er tækifæri, gríptu það.
Lífið er fegurð, dáðu hana.
Lífið er gjöf, njóttu hennar.
Lífið er draumur, láttu hann verða að veruleika.
Lífið er er áskorun, taktu henni.
Lífið er er skylda, gerðu hana.
Lífið er leikur, leiktu hann.
Lífið er dýrmætt, gættu þess.
Lífið er auðlegð, varðveittu hana.
Lífið er kærleikur, gef þig honum á vald.
Lífið er loforð, láttu það rætast.
Lífið er sorg, sigraðu hana.
Lífið er söngur, syngdu hann!

Móðir Teresa

S

ps endilega skilja eftir sig spor ;)