Mom of Ella, who has Phelan-McDermid-Syndrome

Anne is probably one of the strongest people I know and confident. When you talk to her you experience two things: Endless admiration for how she handles her life with her sweet daughter Ella who has been diagnosed with the very rare Phelan-McDermid-Syndrome (very, very simply put: people who have it are missing a little piece of one chromosome resulting in mental handicap, language development and motor nerves - only around 1000 people worldwide have been diagnosed) – and endless inspiration because she is a fucking fighter in the most positive way possible. I met Anne back in 2011 and just recently she told me about her daughter and her experiences with our society especially when it comes to tolerance. We admire her so, so much and we love that we can learn so much from her and that she is so ready for pushing boundaries for not only her daughter but every kid out there.

1.Who are you and what do you do? 
My name is Anne, I am 34 years old and I am living in Tutzing at lake Starnberg in Germany. I work as an advisor and consultant at a media company.

2. When did you become a mom? 
I became a mom at 30 - back on October 2015z

3. And then Ella came along. How were the first months?
Totally crazy! But filled with so much love. When I was in labor I thought to myself: I cannot doing, unimaginable - me  being a mom? Not happening! But once they put Ella on my belly it’s just like everybody always says: endless, unconditional love. The first year in the life with Ella was totally normal. She slept more than others and in those typical “what my child can do already”- conversations I - in hindsight - was often the still or mum one - but actually everything else was completely “normal”. Also according to all of the doctors.

4. How did your life change? 
My life today is more honest and more direct than before Ella - and I am not afraid anymore. I am not scared of no one and nothing - that is amazingly freeing. Sometimes it feels like that we live in a parallel universe. Not that it’s bad or worse there - and sometimes it feels more relaxed than on the other side with healthy kids - because they seem more under more pressure. 

5. When did you notice, Ella is somehow „different“? 
We had just moved into a new house, new life, so much excitement and happiness. It was nothing that would pass my mind that our child is seriously ill. But that’s what it was. Doctors in all the hospitals we visited told us, Ella will never pass high school and “you know are able to get a disabled person’s pass”. 

No kidding – these were the very first comments and reactions regarding the disability of our daughter. After a while my husband and I we did our own research and read a lot - and eventually got to go to very good doctors. It was a bit of a longer procedure because Ella has a very rare syndrome (the Phelan McDermid-Syndrome).

6. How did you proceed after the diagnosis? 
Of course there were sleepless nights and always the questions “why her”, “ why us?” And at some point I picked a special corner in our house - I call it my Feng Shui corner - that’s where I sat when I was really sad. And for whatever reason when I sat there, I felt more calm, inner peace and I could breathe. We also got rid of the stupid “why us” questions. I could also ask instead “why not us?” - life is pure destiny.

7. How can we picture your daily life? 
I don’t think it’s much different than to other families. Ella Wales up around seven and before saying anything, she laughs first - always.  In general she laughs a lot. I had her in three different day cares up until now, but it never lasted long. I want Ella to be accepted just like every other child. For me it doesn’t even have to be inclusion - but it has to be right and good for Ella. In this point, I have the same expectations as any other mother. Unfortunately there is a big difference between expectation and reality when it comes to the integration of disabled children.  So far I have bad experiences with inclusion. Even though it works well in other countries and able bodied and disabled people get to grow up together. 

8. Has the relationship to your husband changed and if yes, how? 
Directly after the diagnosis my husband said immediately: “She is and stays the best” - I am still thankful to this day for him saying it. His attitude helped me a lot to stay and handle the whole situation in a positive way. We are both grown ups, no one of us stood still and I believe it will help us grow our entire lives. Our jolly and carefree times are rather short, yes. We now fully understand the dimensions of “in sickness and health” or “in good and bad days”.

And of course we also have our limits. But we laugh a lot and my husband has a great sense of humor and that helps. Always.

9. What is the most beautiful and what the most challenging when it comes to being Ella’s mom?
The most beautiful is she herself, her laugh. She is the best teacher that I could get. In only the Short amount of time we have had her I have learned so much about life and myself. The  society and my environment is the most challenging part. The endless explaining and simply the fact not going into a restaurant or a playground anymore without being looked at as soon as Ella behaves differently. In the meantime my skin has gotten pretty thick but that is something that will always annoy me. 

10. How can we picture Ella’s day?
At the moment she is home that means we can plan our day freely and we only do things we are into like two hippies. During summer we  go to the lake a lot, she loves being around people so she likes grocery shopping or simply going for a walk through our village. In the afternoon she is often in Therapie like horseback riding and speech correction and physiotherapy.

11. How would you describe your daughter in three words?
Smart, sassy and funny.

12. You go to the grocery store with Ella. How does this go down? 
Ella communicate differently than other people. She makes sounds like aaa, ooo, ughh, and she looks totally normally while doing so but in the very beginning I had to listen to things like “Do you talk to your child even?” Or “Have you been to the doctor yet with her?” from strangers. But there are also funny situations. Ella gets a kick out of the beeping noise when a product is scanned. Recently on a Friday afternoon - everyone was stressed including the cashier - Ella makes a squealing noise when she hears the beep and laughs and cannot contain herself with excitement. After a short while everyone’s stressed faces changed and everyone smiled.

I think it’s monumental what a child like Ella can impact society.

13. How come you are so powerful and confident and have you changed?
Even though you don’t see it but I work out. Since giving birth I gained a lot of kilos but regularly work out. That does me god. friends are extremely important also the exchange with other families. That empowers me. We met so many great People through Ella. I also got more confident and I don’t care about little problems anymore.

14. Mommy Shaming: With what prejudices or accusation do you have to deal? Is there a question you get asked a lot by strangers?
Have you had an amniocentesis? For my taste this question alone is too invasive and no one should ask a mom or a pregnant woman this. But this is the most typical question I would say and it has become common. It’s like you want to make sure that it couldn’t have happened to you because you had one but there is so much knowledge missing in this question. Many syndromes - including ours - can only be tested under certain circumstances during pregnancy. A blood test is not certainty it only focuses on special syndromes and if positive leaves you with an extremely decision that needs to be made. And also, the blood test is also not 100% certain. Therefore, even healthy children might get aborted because the test was positive. 

15. Let’s talk about tolerance: What was the most hurtful memory?
In one Kindergarten which braced itself with being inclusive, they told me that Ella cannot join any excursions or trips they take and in general they would have to see first if it works out with her. They would have never told this a mom of a healthy child.  

16. What do you wish for in other people?
Reflection - how would they like to be treated if they were the ones being affected?

17. Do you want more kids?

18. What do you wish for in the future for Ella?
Enjoying and living life to the fullest. She should live as independently as possible - we will do everything for it.

19. What should we change in Germany in order to integrate disabled children better? 
When disabilities become more common, everything will change automatically. My dream would be a campus with all kinds of schools - also a special needs school -  in one place. Projects could be organized in between all schools. All the fear of interacting would be gone. 

20. What do you think about the German empathy? What can ever single on of us do to be more empathic, mindful and considerate? 
I think we should learn from our history. In 1945 there was factually no disabled life anymore in Germany because of the euthanasia. With this in mind we have to have the discussion around blood tests. Especially all political parties have a great responsibility  – and when the FDP, a liberal party here in Germany – tweets an image of a child that has trisomy 21 with the note that they rather known that this „risk“ can be for prevented for everyone, then I am not only mad but also am scared what direction his country goes into.

21. What do you want to tell the world? Something you want to get off your chest?
In the end everyone will have something like Ella at one point meaning that everyone will have something old or unique about him or her. Everyone will kind of slow down this society - some more and some less.

Also: Why can’t we laugh with or smile at mothers and their disabled children if we see them in our daily lives – maybe even smile wider at them than moms with healthy kids. That would be so much more beautiful than just the looks - and a positive discrimination. 

Photo Credit: privat; Jan-Philipp Strobel, Gmünder Tagespost
Images show Ella with her mom and dad, and her during therapy with dolphins and her weekly horseback riding therapy


by Teresa