A new family.. (chapter 3)

For weeks we tried to feed William the proper way - but William never got the hang of it.

For weeks we tried to feed William the proper way – but William never got the hang of it.

On Williams ninth day I talked quite alot with doctors and nurses the way I always do with people that fascinates me, and especially now when I nervously awaited something important – that chromo report – Normally these people gladly answer, but on this particular day everything was different. They knew something that we weren’t supposed to know just yet. So before the good doctor entered the room I was already prepared for something bad.

Later that same afternoon he came, along with some supportive staff (they often do when something difficult is about to be said – this was the first introduction to that type of meeting) and he sat in front of us – this part is quite dim to be honest but part of the talk is clear as a day.

Four of five days old William in my arms.

Four of five days old William in my arms.

Chromosome report showing a very rare disorder, a first for this hospital. He went into detail about numbers of chromosomes and how it worked and what was wrong in Williams case. The disorder didn’t have a name except the technical one but the national board of health and welfare had a webpage dedicated for the disorder for us to read. He had a printout with him that we couldn’t keep. I had time to read a few lines about life expectancy and it said around pre school age. Before he left he said we shouldn’t use Google but only trust the info on the page he suggested.

As this chapter really don't have any images that apply I'll just add some early shots from first week.

As this chapter really don’t have any images that apply I’ll just add some early shots from first week. Photo by Krister Wernerliv.

 

We were stunned. Linn especially, she comes from a very different culture were you are being taught that the norm is the right – everything else is wrong and only a burden to the society. How would she tell her parents? Her friends? What would become of her boy? How soon would he die? Will he suffer? She slowly withdrew into a dark hole. She cried tons and wouldn’t speak anything useful for days.

One of the first shots after William got ready for life without CPAP. You can also see the feeding tube.

One of the first shots after William got ready for life without CPAP. You can also see the feeding tube. Initially he also had a special heater above and below him giving this warmer light.

For those who wonder - yes. Most of these shots are taken with the Sigma SD1.

For those who wonder – yes. Most of these shots are taken with the Sigma SD1.

Found a new family!

The first thing I did was googleing. Soon I discovered rarechromo.org which is exactly what it sounds like.. Rare chromosome organisation also known under the name unique. This was our island in an ocean of dark matter.. (Try a Google for Trisomy and you know what I mean) We soon realized that those other one hundred with the same disorder had collected themselves into a closed Facebook group and that’s were I’ve been digging whenever I’ve had any questions. So instead of being unique as so many of you, William is one out of at least one hundred! That’s something! :D

That’s also where we discovered that Trisomy 9 mosaic adults existed and that gave us hope, hope of a future for our own Bruce Lee.

Now this post will get too large if I cover more ground so I’ll stop here the next episode will include¬†some episodes from the first year. Always feel free to ask anything regarding William and or photography. ;)

Little did I know that my boy would turn out to be super cool! :D

Little did I know that my boy would turn out to be super cool! :D

About Carl Rytterfalk

Welcome to my blog! I'm Carl Rytterfalk, a swedish photographer who loves everything that is interesting in the world of photography. In 2002 I fell in love with the three layered Foveon sensor and has since then been an addicted user of Sigma cameras. Though I use Canon and Nikon as well. :)
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6 Responses to A new family.. (chapter 3)

  1. Andreas Schubert says:

    Hi,

    glad to see you back and all the best to you and your little family. My heart is with you and I hope Bruce Lee will keep on fighting as he already did. I really can’t imagine what you three went through already but as a father of two little boys I think I can at least feel a little about your worries.

    Keep up!

    Greetings
    Andreas

  2. John Driggers says:

    Hi Carl, Linn & baby William,

    It must be hard for you to give up your role as best looking guy in the family now that little William has taken it away from you.

    It’s clear now why you have been gone from the site for so long. I admit to some concern over time about your well being and I’d report to my wife from time-to-time, “Just checked–Sigma Carl isn’t back yet.”

    Well–today I’ll have different news for her!

    As for you and Linn, congratulations on your new family. It’s obvious William couldn’t be adored more and parental love as a treatment for all maladies has great power.

    Linn will likely loose her title as most photographed family member on your site too. Somehow, I don’t think she will object.

    Wishing all three of you a healthy and happy new year.

    John Driggers
    Adelaide, South Australia

  3. Ricky says:

    I missed you Carl! I wish joy to all your family. Keep us up-to-date when you can, also when it’s not about reflex photography… the best for William, he is really wonderful.

  4. Mischa says:

    Hi Carl & family,

    I just came across this post about your lovely son. As a father of a child born blind, I may have a rough idea of what you’re all going through. I want to wish you all the best and please try to stay positive!

    Mischa

  5. Salim Ahmed says:

    Thanks for sharing your great experience. It’s exciting.

  6. Congratualte Carl Rytterfalk for sharing your notions. Being a father is the happiest thing in this mundane life. To be an ideal father is the most momentous task than any other thing. Only an ideal father can give his new born baby a right way to go ahead in life. Welcome for your new born baby. May he grow up with a perfect environment where there is no envoy, quarrel etc. Best wishes for Rytterfalk Photography for editing images with decent way.

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