Frankie has just been born, she looks up at you with her beautiful almond shaped eyes and you know immediately that she has Down Syndrome. In that moment the first words that tumble out of your mouth are…. ‘she’s perfect.’ And she is.
The journey begins.
You are in for a ride.
Just not quite the ride you might be expecting.
I’ve got a few secrets to share with you.
You will cry and you will grieve and that’s ok. Talk it out with the people you love, make contact with parents already on this journey. You don’t have much personal experience to draw on but as one Mama will say to you in the not so distant future, ‘my life having a child with a disability is not what I expected it to be’. You’ll discover this in your own time. For now you have your own preconceived ideas to work through. You have fears, worries and questions. What will the future look like for us all? What about the dreams I had for my child? Will she be included in school, in society?
Unlike the negative language used during pre natal screening, your baby is not a ‘risk’ Frankie won’t suffer with Down Syndrome. Down Syndrome is a condition, not an illness or a disease.
You’ve just had a pretty smooth pregnancy, quick birth, no trip to NICU. In fact these first months will prove to dispel everything you ‘should expect’ with Down Syndrome. Frankie will take to breastfeeding like a pro, her heart will not need surgery, she will meet typical milestones over these first months.
You will be so fortunate to have the most chill baby you’ve ever met. Breathe and enjoy these moments that you’ll never get with her again. The pace of this life is one you will come to cherish, unhurried and beautiful.
You will realise how vulnerable you can be but also how strong you really are. You will discover all over again the amazing people you already have in your life, they will stay by your side during the struggles and the joys. They will love your baby with the same intensity that you do. You will be overwhelmed by their love, support and generosity. So overwhelmed you never quite feel that you’ve found the right words or ways to say thank you.
A lot of the information you will read or be told will be out dated. You will soon discover that so much is now known about how our children learn and about their health. You will be in touch with families who will share the journeys of their incredible children, you will learn about and talk with people who have Down syndrome who are accomplishing amazing things and making the world a brighter, better place.
There may be times you feel anxious about joining playgroups, feeling like you can’t relate to other parents, worried about how they will react. But as you push past these feelings of insecurity and uncertainty you’ll meet beautiful people with open minds and open hearts. They won’t treat you or Frankie differently. You’ll realise we are all facing our own struggles, they may look different but they are all just as important. Some days we own it and other days we just try to keep our heads above water.
You will initially worry about what people will think and say. And what you will say in reply, do I mention Frankie has Down syndrome or just leave it unsaid, do people know just by looking at her? You’ll soon realise you just don’t care. You don’t need to explain or justify Frankie. She is who she is.
As a brand new Mum navigating your way through this world you’ll be floored when a nurse, yes a nurse says ‘it’s a shame you had a little downs’ after you have just been boasting about how well she is doing at 5 months and how in love you are. You will tell her you don’t think it’s a shame at all but be able to tame your mama bear instincts to rip her to shreds and instead take the issue higher hoping that this will inform the way the entire staff deal with future parents whose children have different abilities and medical needs.
Parenting is tiring but when people make throwaway comments online about whether your child has the right to even exist it’s downright exhausting. Sometimes you can brush these comments aside and keep your head up but other times you’ll want to curl up with your daughter and keep her safe from the world. But you’ll know she has too much to give, expectations to exceed, views to change, a world to explore and a life to enjoy. Her resilience in this life will motivate you to keep moving forward through the struggles that will also come.
Frankie will teach you things you didn’t realise you needed to know. You’ll not only become a Mum, you’ll become a researcher and an advocate. You will earn more creases on your face, from worry and from laughter.
You will spread awareness and work to make this world a place where Frankie and other people with disabilities, and complex needs are safe, supported, and feel that they belong, their rich contributions to this world acknowledged and valued.
You will look back and wish you had never shed a tear because there is nothing to grieve for. Those worries you had will disappear as you grow together, Frankie will be resilient, motivated, hilarious, kind, happy and these are the dreams I have for my child. She will be invited to parties and have a solid team of family, friends, teachers and therapists, all backing her to go far.
She will be ok.
More than ok.
And so will you.
Bio: My name is Anna. I live in Wellington, New Zealand with my partner Tim and our 2 year old daughter Frankie. During our pregnancy we found out there was a higher chance that our baby could have Down Syndrome, however we opted out of more invasive testing but were monitored along the way. While it has been a crazy ride she is the absolute best thing to ever happen to us.
This letter is part of DSDN's October Down Syndrome Awareness Month campaign. We asked our members to write a letter to themselves during the time they received the diagnosis. Do you know a parent with a child under the age of 4 who needs connections and support? Let DSDN help and get started here.