Our son was born 2 years ago with harlequin ichthyosis. We were told he would not live, we were shocked, devastated, free falling with fear, desperation, confusion. We had an exceptionally fantastic NICU team who cared for us. Our hugest luck was a nurse present at Max’s birth who had already cared for 2 collodion babies. She knew what to do for our baby and she gave us the best advice that I continue to use today:
“You are sailing a boat now with your son, you decide who will be in your boat with you. Positive and supportive people will help you float and sail, negative and difficult people will only make your boat sink”.
Following this advice we have been able to focus on the good in life and let go of the difficult things. And there are many good things in our life, starting with our charming, beautiful and intelligent little boy! We have wonderful grandparents involved in his life, great friends and relatives supporting us. We have random people who appreciate the cute little boy Max is and don’t worry about his skin. We have all the medical aspects of Max’s condition sorted and he is doing exceptionally well. Better than anyone expected. He is an absolute joy and we are so incredibly proud of him and everything he has achieved.
The only difficult aspect of Max’s condition is the negative reaction we receive from some people, strangers on the street and sometimes people close to us. At first we thought we had to explain everything to everyone and more or less apologise we had failed to give our baby perfect skin. But after a few of weeks being home this stopped, we were so proud of our fighter there was no way we were going to listen to any pity or useless advice. He is going to have different skin all his life so we quickly decided to give him an example where he is in control of it.
We tell everyone he has it from us and it is simply extremely dry skin. He uses a lot of cream and washes a lot, but that is it. He is not in pain and he does not itch and it is not contagious. He lives a very happy life and is a very bright little boy.
For the people close to us that haven’t managed to be nice or connect with our little star we simply don’t have much contact with them anymore.
For the regular stupid “wow that is a sunburn!” from people on the street, I have replied “wow were you born that rude or did it come later?”. For the stares/grimaces I have gone up to people and said “he sees you so you really ought to smile!”. It takes a lot of courage to do this and sometimes I have been pleasantly mistaken, once a mum and her daughters were actually staring at our unusual Norwegian buggy and hadn’t noticed Max!
Now we can’t be bothered talking to rude people – it takes too long – instead we have created personalised cards to hand people with a little information and reminding them to be respectful.
We have had many beautiful encounters too. We travelled a lot in Max’s first year and came across people with similar stories to ours, we also came across people who didn’t know anything but were compassionate and sweet anyway. These encounters give us huge faith in humanity.
Everything has gotten better. The challenges are not over but we believe long term everything will be ok.
Max started Kindergarten in March, just after his second birthday. I thought I would keep him home longer but he is too independent and sociable! He is in an inclusion Kita which means each class has a couple of children with differences. He has wonderful teachers who manage his creaming very well and the other children all play with him.
We have a great life with our gorgeous son and every day my husband and I smile at how far the three of us have come and how lucky we are.
Being part of the ISG community helps us and we would like to thank all the people who work for the group or are connected to the community. By being present and active you make the seas smoother for Max to sail.
As written by Louise Jenkins, proud mum to Max