Our story

I didn't want to tell this story. In fact, after we made the decision to return to Germany back in October, I simply wanted to close this chapter of our lives, pretend it never happened, mask over the hurt and move on. We decided not to do anymore press interviews. We didn't want anymore publicity, positive or negative, on our family or our children.

I simply wanted peace. I wanted a place to call home. A place for my children to call home, wherever that may be. I wanted to put all my previous dreams and hopes of building a life in New Zealand high on a shelf somewhere and never have to see it or think about it again.

Until I read this article last week. And this. All along I carried a secret thought that perhaps we were simply unlucky. That it wasn't meant to be. That having a child with a disability was our cross to bear. That rules are rules and perhaps the NZ government had a right not to accept our child because of who he is. But seeing the same thing happen to another family, one that has perhaps much more to offer this country than we do apart from our genuine love and history with it, brought the hurt right back to the surface.

At one point I even thought it was my fault, for moving back to Malaysia when I was pregnant with Liam. For wanting to be near my family when I gave birth to my firstborn. If I hadn't done so, if we'd just stayed on in NZ, Liam would naturally be a NZ citizen and they would have to accept him no matter what. I blamed myself for not being far-sighted enough. For having a child with a disability. Until I realized that what is happening here is so wrong. On so many levels.

My child was rejected from this country and it wasn't because I moved back to live in Malaysia for awhile when I was pregnant. It's not because he was born with a rare genetic disorder. It is because there is something fundamentally wrong with a country that refuses a child residency on health grounds, when both his parents have the legal rights to live and work in this country.

For those of you who don't already know this, The Husband is a New Zealand citizen by descent. This means that his citizenship was passed down from his father, my father-in-law, who was born and raised in New Zealand. So even though The Husband grew up in Germany, he has held New Zealand citizenship all his life. He has a New Zealand passport. He has lived and worked here for nearly ten years collectively, moving here in his early twenties, and then living back and forth between the two countries he calls home, Germany and New Zealand.

I, on the other hand, have been a New Zealand resident since 2008 when The Husband and I got married here in Auckland. I was working here as a journalist on a work visa when we met, which makes us both valued, full-time employees who have contributed to the tax system through all our years here.

In 2011 I fell pregnant with Liam. I suddenly wanted to go back to my home country of Malaysia. I am an only child, and I wanted to be near my parents, who have missed so much of my adulthood due to me living abroad. I didn't want them to miss out on the experiences of being first-time grandparents, even though it was only going to be for awhile. And so, we made the decision to move back to Malaysia for a few years, so I could share that very special time in my life with my family there. Little did we know how much that one decision would affect the rest of our lives.

Liam, as some of you know, was diagnosed with congenital heart defects at birth. This then led to a quick decision to move to Germany, where we knew The Husband would find work easily, and where Liam would receive the best healthcare we could provide for him, being a German citizen. We didn't think returning to NZ then would be an option, as cost of living is considerably higher than Germany, and I wasn't planning to return to work again so soon. It is also a much smaller industry for The Husband's type of work, and with a sick child and without any family support in the area, we headed to Germany. It was in Germany where after a heart procedure, Liam was diagnosed with Williams Syndrome. We continued to live there for another two and a half years, where I gave birth to Nolan, before we started to get back on our feet and the possibility of returning to New Zealand became real, a country which we've always considered to be our home.

The Husband was offered a position with his old company when they learned that we were planning to return, and in February 2015, we sold everything we had and flew here with our boys. Being both legally allowed to work and live in the country, we didn't think it would be a problem to move here with our children. Of course they would be allowed to stay. If we're both living and working here, surely anyone can see that our one-year-old and three-year-old has to be with us. Surely no government in its right mind would decline a child's residency application to live in a country with his family.

But you know what? They can. And they did. After hundreds of dollars in fees, medical reports, and paperwork, Nolan was granted residency within a month of his application, while Liam's went on to a medical assessor for further review. Nearly eight months later and a continuous submission of more paperwork, medical reports and letters of support, and we finally heard that a decision was on the pipeline. But even then, we still didn't think they would actually decline his application. That they would reject a three-year-old's application for residency in a country where his entire family lives and works and pay taxes, because of a disability that was not his fault.

Our story ended up in the press. We received a lot of support. Unfortunately, we also received a lot of nasty comments and feedback from people telling us not to 'burden the healthcare system' with our sick child, never mind that we both worked full-time and have done so since arriving in this country, or that our 'sick' child did not receive a single therapy session or extra medical care in the year we've been here until towards the very end of last year. We paid privately for him to see a cardiologist. We were prepared to pay privately for any medical care needed, should he require any and not be in the healthcare system by then.

Of course, his health was a consideration. We knew he'd need therapists, teacher aids, perhaps more visits to medical specialists than other children. We've heard and experienced good things for ourselves with the healthcare system when we lived here before. BUT we didn't come back to New Zealand, a huge move which took everything we had, for that reason.

We came back, because we've always wanted to do so. Because having a life here and building our family here was always our dream, even though circumstances meant we've had to move away for a period of time here and there to be with our respective families. We're a multi-cultural, expat family, with relatives in Malaysia, New Zealand and Germany, but New Zealand was our home base, and our starting point, because this was where The Husband and I met all those years ago. This was where we got married. This was where we started our lives as a married couple and where our separate backgrounds and cultures merged and became the little family we now are - Malaysian, Kiwi, and German all at once.

No, we didn't choose New Zealand for its better healthcare system. In fact, Liam had all he needed provided for him in Germany. But we returned because our heart told us this was home. Because it was home. Because we wanted our sons to grow up by the beaches we love so much. Because we wanted to return to this beautiful land, to work here, to live here, to grow old here.

That is, until we were told that our child was not wanted. That his ongoing and future health will be a burden to this country. That my beautiful, sweet, genuinely lovable three-year-old is a burden, and not welcome in the country where I live. Which broke our hearts completely in two.

Never mind that it's a violation of human rights. That it stinks of discrimination towards the disabled. That it was a shortsighted decision based on a one-for-all rule that shouldn't necessarily be the case. And yes, we could have appealed the decision. We could have brought in lawyers, involved more press, spent more money, waited another year for the appeal to go through and a decision to be made. Perhaps we could have won. Or possibly be rejected once more.

But the thing is, our hearts have been irreparably broken. The country we both love so much, that we gave up all we had in Germany to come back to, has disappointed us beyond belief. At the end of the ordeal, all the stress, the worry, the anger, the frustration, the unfairness, simply boiled down to one thing. We no longer want to live in a country that does not welcome our child.

In one of the articles, Professor Leeman states that "it is already hard to have a disabled child but it is even harder when you live abroad because you don't have the family to support you, and then it is even harder when you see you are not welcome with your child in the country where you live." After reading that, I knew it was time I shared our story too.

At the end of the day, this country can't welcome The Husband and myself, and one son, but not the other. Because unless we were monsters for parents who would leave one child behind, all that tells us is that we're all no longer welcomed here.

Never mind my double degrees in Communications and Psychology, and the fact that I may be able to eventually contribute and work with the disabled community here and especially the NZ Williams Syndrome Association, being a cause so close to my heart. Never mind The Husband's unique skills in his field of Engineering, and his ability to speak fluent English and German, prompting his employer to write a letter of support to the local minister stating that his skills will be hard to find in the local community. Never mind that Nolan could grow up to be a doctor, a teacher, a lawyer, a therapist, a worthy, contributing member of society. Never mind that Liam already cheers up everyone in his path who meets him, and brings smiles on peoples faces simply by being who he is, Williams Syndrome or not.

They could not see beyond the disability. Beyond his 'potential future medical needs'. And just like that, our nearly 10-year-old New Zealand story comes to an end too.

We're okay now. Or at least, I am. The Husband, who is half Kiwi and has been proud to be all his life, understandably carries a lot more hurt than I do. But we're looking forward to returning to Germany, and like I said before, closing this chapter of our lives once and for all. Hopefully one day we're able to look back and remember only the good times.

But this story needed to be told. For me, for us, for our children, for Professor Leeman and his family, for anyone out there who've gone through or are going through the same feelings of disbelief we went through. This story needed to be told, because even if I am only one voice, it may be enough to make a difference one day. So here it is.




Comments

  1. I simply cannot understand how a country can discriminate (especially) children like this. I cannot understand how New Zealanders do not think this is unfair and make change happen. Glad you have found peace with it.

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    1. I think a lot of people do think it's unfair but do not have the power to change it. =( I had to accept it, because otherwise it would just eat at me and tear us apart. But I hope people will sit up and start to take notice that this is going on and it shouldn't be.

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  2. It seems odd that it would even be a question of whether he could stay when both you and the husband showed up on the shores legally. I'm sorry that things didn't work out as you hoped...here's to your new chapter back where you are welcomed with open arms.

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  3. I just can't believe it. I really cannot. It's so unfair and cruel. But thanks for sharing your story. I hope someday they come to their senses and change the law.

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  4. Hallo, Schade! Be strong, you little beautiful family! It's so weird I have to ask whether you had the slightest idea beforehand that an outcome like this is a possibility when applying for residency permits for the kids? Is an outcome like this outlined by the immigration office in their rules and guidelines?

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    1. Hi Mara. It does state that you have to meet an acceptable standard of health. But since my husband and I are legally allowed to move here and live here, we naturally assumed our kids would be granted residency as well as who would separate kids from their parents? And it wasn't as if all of us were applying for residency, then I would understand if we didn't meet their health criteria as immigrants. But I already held my residency, and my husband is a New Zealand citizen. So we didn't think for a moment that our son's residency would be declined, because that is essentially telling all of us that we would all need to leave as well.

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  5. :\ understandably this is not on your mind atm, what im going to comment, but I would totally seek justice and sue NZ. Perhaps there would be other interested parties with likewise stories and law practitioners that would agree to co op pro bono. Good luck with the move back!!

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  6. Wow, I just stumbled across your blog and this is shocking. So sorry for you and your family. I hope you settle back in to life in Germany as smoothly as possible.

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  7. Oh man, as a Kiwi I am so so sorry.
    I simply wasn't aware. If you and your husband were granted residency, one would assume there would be no issues for your children. Given we intend to either adopt internationally or move overseas ourselves, this issue bothers me deeply.

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