“Living with someone who has Prader-Willi Syndrome can have a huge impact on families, especially on those with more than one child. At any given time the sibling of a child with PWS can feel love/hate, sad/angry, proud/embarrassed, protective/resentful and sometimes all these emotions all at once.” PWSAA – Go Orange Awareness campaign 2018
Our PWS angel Ella has an older sister Maia who’s in year 12 this year – sitting for the HSC, as well as a younger sister Anja, in year 2. 17, 12 and 7 – approximately 4.5 years between them. People often ask why we had such big gaps – it was never really planned, it’s just how it played out.
I started writing an overview of Ella’s relationship with and the impact she has on her sisters Maia and Anja, but it felt a little detached. So I decided to pen a little note to them.
PWS & Siblings
Maia and Anja,
Sometimes we forget to acknowledge the role that you both play being Ella’s sisters, and the impact that having a sister with a disability must have on you.
Maia – you were our first born and we enjoyed you as a baby so much that we didn’t start thinking about another child until you were about 3, thinking how nice it would be for you to have someone to play with. I remember when we announced to the family at your 4th birthday that we were expecting a baby, you were so upset and cried so much… you knew you had it pretty good and a baby was going to change your ideal little world.
By the time Ella was born you were 4 1/2, and I was amazed by how much you had matured in the 6-7 months since your birthday. You loved your baby sister and I cherish those photos of you holding her in hospital, adoring and accepting her, not questioning too much why she wasn’t coming home straight away or why I was constantly in tears. A lot of those tears were for you my girl, because I felt so bad that we had brought this upon you, the world of special needs, and I was so worried about what your future would look like caring for your new sister.
I loved the special bond you and Ella shared those first few years. You were a wonderful and supportive big sister, but you didn’t benefit from the experience of having a sibling that you could really play with, because Ella wasn’t walking or talking for a very long time… so you relied on your neighbourhood friends to fill that void. I was so happy you had them, but I was sad for Ella as she would watch you go out to play and she was often inside with mama.
I remember the times you resented Ella too and all the attention that was given to her, and how unfair you felt life was. We as your parents weren’t really sure what to do – maybe we overcompensated in some areas to make up for where you were lacking in others.
Anja – we always knew we wanted to have you, we always thought we’d have three…. but it was such a HARD decision after Ella was born to have another one, so you came a little later than expected. We worried about whether our next baby might also be born with a disability, but were also thinking about the future and hoping Maia would have someone to support her caring for Ella. We felt bad bringing a new baby into the world thinking about these things….
When you were born, Ella absolutely adored you (and still does). She loves babies and finally she had one of her own. You were such great little playmates and whatever you asked, Ella so willingly did it for you. We were so happy that Ella finally had someone to play with and fill her time. But then you started kindy, and being such a quick learner, you soon overtook Ella and your needs no longer matched hers.
At school, you had the burden of looking out for your older sister who was in the Support Unit. I didn’t realise how much this impacted you until you told me last year how relieved you were that Ella was going to high school and that “now Maia can look after her, I don’t have to worry about her at school anymore”. My poor baby, the weight on your little shoulders and the responsibility you took on at such a young age.
Maia, now that Ella’s in high school, you’ve gone back to that relationship you first had with her and have really taken her under your wing. We don’t know how much we could have coped with Ella starting high school without having you there to look out for her.
As your parents, there is so much heartache knowing that the load of caring for Ella has been thrust upon you… but we also know that caring for and growing up with Ella has taught you both some valuable life lessons around tolerance, patience, compassion and empathy. You have strong hearts and minds and in some ways, are mature beyond your years. We don’t say it often enough, but we are so proud of the amazing human beings you have grown to be.
Conn3cted are helping to raise awareness and funds for Prader-Willi Awareness Month. If you would like to help our fundraising efforts, please visit https://city2surf2018.everydayhero.com/au/team-ella-for-pws.
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Emily Garcia is our CXO and mother to 3 beautiful girls.