Thursday, August 14, 2008

Expect the Unexpected

I've been wanting to blog about this for some time now, but I was waiting to tell my family in person first, and with my mum being in hospital it sort of fell back.

I wanted to let all of my online and real life friends know that we're expecting again!
Peter and I have already started the process required to adopt a baby with Down's Syndrome. We have a lovely Volunteer Agency doing our homestudy at the moment. When the homestudy is done, in a few months' time, we will be aproved to adopt, and then we will be looking for our child. We are hoping to be parents of three by next summer!

We are looking for a little girl, and because of adoption regulations and the age of our children, she will have to be as young as possible, probably between 6 and 10 months (although we would not mind a slightly older child if they decided to place one with us.)

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THE FINE PRINT

Now I know that I've blogged quite a lot already about DS (Down Syndrome) and a couple of people I know told me they find it "depressing." I'm sorry to hear that, as I don't think it's depressing at all. I don't blame anyone, ofcourse, but I would like to believe that as you get to know our daughter you will grow to find her delightful instead of depressing (this seems to be the reaction of most family members I've encountered on and off line.)

In any case, I know it is a very unusual decision, and it will take most people by surprise; so for your benefit, here is the full story:
How we came to want to be the parents of a baby with DS.

When I was pregnant with Matilda, I did an awful lot of research. Peter and I wanted to know what everything meant, what every test offered was for and what the risks and benefits were for each one. We wanted to be able to make an educated decision about everything (we're control freaks like that.) As a result, we looked into the most common genetic and birth defects -what could go wrong with a pregnancy, that the tests could detect; what the implications would be; what could be done about it. We decided pretty soon that we would accept any baby that we made, and that we would not terminate for any condition that was compatible with life (and the latter ones come with physical defects so great that they would be obvious in our 20 week scan.) So we refused all tests appart from the ultrasounds.

In our research, we read not only medical descriptions of the various conditions, but also blogs, books and essays by the families of children born with various chromosomal or genetic defects. We saw videos, looked at photographs. I found myself especially drawn to the ones about DS. So I went on reading more and more. I started feeling that I was "preparing" myself for something, like it was meant to be.
When I was pregnant with Philip, we repeated the discussions about diagnostic and screening tests; again, we decided to not have any. We went on doing our research; and I went on reading about DS. We were touched and impressed by these people. I, especially, felt a really strong sence of "destiny." I know it sounds corny. I'm not religious, and I can't explain it, so you'll just have to accept it. Believe, if you will, that it was what I was "meant" to do, or that I just convinced myself about it, and then made it happen by taking certain decisions, following certain paths. It makes no difference -there it is. Do with it what you want.

Peter, being the wonderful person that he is, took me seriously and thought hard about adopting a child with DS. He can be very thorough. We mulled it over, weighed the pros and cons and did yet more research. We went to group meetings. We visited families with children of various ages. When we decided to go ahead with it, it was not a rash decision.

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So what might our daughter be like? She will probably be short and plump (people with DS tend to be shorter and stockier than average.) As a young child, she will be like all babies and toddlers, but she will probably be reaching her milestones at a slightly delayed pace. She might be 9 months when she sits up, or 2 years when she walks (as a very rough average, children with DS have a developemental age approximately half of their chronological age. This means she might be Matilda's age, and behaving like Philip. That's all there is to it -nothing scarier than that.)
She WILL learn how to walk, run and talk. She might take longer to do so, and her speech will probably not be as clear -but we will be able to have chats with her like we do with all our children. She WILL go to school. She is more likely to have a heart condition that might need monitoring or medication, she is more likely to have hearing problems and need hearing aids, she is more likely to have low muscle tone, which means she will find it more difficult to do things such as run, or hold a pencil steady enough to write. Thank goodness for computers then. As she grows up, she will have friends, things she likes to do and places she likes to go to. She will tell jokes, or play practical jokes on us (like her daddy used to do!) She will get angry and get sad and ask questions, but she is likely to be a happy, friendly, empathetic person most of the time. She will probably be more innocent than her years, and she will probably be slower to respond to things, or learn things -but she WILL learn them. She will need us to look out for her, but she will NOT need us to be looking after her 24 hours a day (this is what a lot of people seem to think it will be like, for some reason!) She is very likely to be able to live semi-independently. This means she might have her own appartment, or share a house with room mates, and probably need someone to check up on her during the week, help her with planning, bills etc. Or she might need to live with us all her life -we don't mind. We enjoy having our children now, we are sure we will continue to enjoy having them later. We LIKE being interdependent.

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Have we thought about what this will mean for our children?
This is a favourite question. The answer is: yes, we have. We understand that having a sibling with additional needs will probably make some things more difficult for them than they would have been otherwise. We don't believe this is a bad thing. Having to deal with difficulties is how you learn to overcome them. We KNOW they will love and value their sister (we came across many siblings of people with DS, of all ages, and they all loved their brother or sister and said they learned things from them.) We believe that having a sister that society doesn't see as "intelligent," "attractive" or "valuable" (read: likely to make lots of money or get famous) will teach them that looks, brains, money and success are not the most important things in life. Being happy and a good person is. They will learn to be patient, they will learn to accept difference and they will learn that making fun of people is hurtful and wrong. We will not have to make an effort to teach them these things; they will learn them from their sister.

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What about if we can't look after her when we are older?
Ah, the second most common question. I'll humour this one too.
She is more likely to live semi-independently than not. IF she is not, we might be able to look after her. IF we can't, she will have at least 3 brothers and sisters that might want to have her live with them (we're not finished having babies yet.) IF none of our other children want her to live with them, they might decide to all chip in to get someone else to look after her. Or another family member or friend might want her. Or the world might have ended by then. I don't understand this question, I have to admit. That's an awful lot of IFS. Peter and I might be unable to live independently in our old age too, but no one seems to worry about that. We might end up in a home, she might end up in a home, any of our other children might end up in a home.

Learning more
Heh, I know this is wistful thinking, but this child WILL join our family. If you would like to learn more about DS, to prepare for her arrival or answer any other questions you might have, here are some good links:
http://www.downsyn.com
http://www.downs-syndrome.org.uk/

I know that a lot of you will not understand our decision, but we just want to share it with you, and hope that you will accept it and wish us best. The rest will come later.

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(Photocraphs courtesy of google images.)

9 comments:

Michelle said...

congratulations. And hey, that IS my girl up there. :)

Megan said...

Anna - You are such a wonderful, generous woman. I am so excited to watch your family grow in this way.

Angie said...

Your post made me cry. Congratulations are starting the adoption journey.

Angie - My girl Sam(from downsyn)

Anonymous said...

Many congratulations.

You are certainly amazing.

What have both your and Peter's family said?

Nicole said...

You will be truly blessed! I can't wait for you to join this journey and all the amazing things that come with it!
HUGS, Nicole

Kris said...

You're awesome! You'll probably find it's the kind of folks who can't wait to be rid of their own kids back to school that make the most negative remarks. People who like being with their children will understand completely - a child is a child no matter if they have DS, CF, asthma, eczema, allergies... they all drive you insane and love you unconditionally. :)

I hope it all comes to fruition very soon.

Kris x

Dolores said...

As a parent who has adopted 3 children with Down syndrome, I can tell you that there will always be people who will wonder why. But YOU will know why and so will anybody who takes the time to get to know your children with DS. There is so much joy in parenting them; celebrating each milestone, the unconditional love-- they will openly share their joy and excitement with you in the little things that we take for granted. Do not fear, the good will outweigh the challenges. My older kids said (during their teen years) that "adopting is the best decision we ever made" and "you sure picked some good ones [kids to adopt]!" The older kids don't stay away from home long because they love and miss their younger siblings.

Dolores

June Berger said...

I "totally get" where you are coming from. We have adopted Jonathan (DS) and are adopting Anah (DS). We wouldn't change our lives for anything (unless it were to adopt more children with DS ;o) ). Wishing you much joy in your journey.

The Gross Family said...

Wow. I couldn't have said it better. I have truely received each and every question you touched on. I suppose it is human nature to wonder why someone would actually choose to parent a child with a special need. Just like wondering why someone would choose to have 18 children, marry with three wives, etc.

If your not comfortable with a situation yourself, then it will be apparent in your attitude of doubt or disposition to incredulity toward someone adopting a child with a SN.