Dear New Mum
My story is probably very different from yours and you’re probably feeling things right now that I never had to face. You see, River wasn’t diagnosed with Down syndrome until he was 6 months old, it was missed by medical professionals and strangely I often feel very grateful for that. I feel that way because throughout my pregnancy and for the newborn baby period I was just incredibly happy. I wasn’t overloaded with scary medical advice, or told that my baby would have a terrible life, or that it was unfair on the siblings, or that I should have a termination. Nobody told me they were sorry. I suspected River had Down syndrome when he was born, but I was assured by doctors and midwives that he was fine. Even after that I think I still knew deep down, but I clung to the fact that everyone told me otherwise and put it to the back of my mind. Or at least I tried to. Either way, for the first 6 months of River’s life he was just my beautiful newborn baby, without a diagnosis and I fell head over heels in love with him.
I always wonder whether I’m the right person to be dishing out advice to new parents, whether they learn during pregnancy or at birth. It may sound a bit strange but I often feel a bit left out, a bit on the sidelines because I missed out on such a huge part of having a child with Down syndrome. I never had that life shattering moment of sadness, that moment where you feel like your life will never be happy again. I just didn’t feel it, and the only thing I can put it down to is the fact that I had already gotten to know my son and just knew it was all going to turn out ok. And I guess that because I had suspected and known deep down that River had Down syndrome, that I’d already in some way processed those feelings without them really bubbling to the surface.
But I do understand. I do understand the sadness you feel and the fear that you have, because I know I would have felt exactly the same way. I know I would have felt devastation, I know I would have felt angry and I know I would have felt unable to cope or see a happy ending. I know I would have felt lost, not knowing which way to turn and how to make things ok again. I know that I would have felt like a failure, that I’d failed my family and that I had failed my new baby. I even know that I would have felt guilty for feeling everything that I was feeling.
What I thought I knew couldn’t have been more wrong
I would have pictured Down syndrome and imagined the outdated and false stereotypical vision that so many of us within society believe. In my mind I would have seen a lonely adult, with no friends, old fashioned clothing, with no understanding and always with their elderly mother. It would have been so wrong and now I can see how views of Down syndrome within society couldn’t be further from the truth, but I’m being honest and that’s how I would have felt. I would have pictured my son as a man without any type of ‘normal’ existence, a man who could never feel true feelings, and a man who would never have anything to offer society or who society would never accept. I would have seen a bleak and grey existence for the life I had wanted to create so much, and I would have wondered if it would be kinder for him to never have existed at all.
It breaks my heart that I know I would have felt this way, and I know for sure that I never would have pictured River as a man who could lead a fulfilling life. I can now tell you though, that everything I never would have been able to picture for my son, I hand on heart picture it all for him now. With honesty I can tell you that when I think of River’s future I see him with some form of independence, with a circle of friends, with a job, with hobbies, with passions, with ambitions and with love. I envision a school life full of childhood friendships and an ability to learn along with a love of it. I can see a life filled with travel, a life filled with adventure and a life full of substance.
I’m ashamed to say it now, but before I knew what I know now, I never would have thought my son’s life could be meaningful, or anything other than just sad and disappointing. I can tell you without any uncertainty that I never would have been able to imagine the feisty, determined, funny, cheeky, sweet, loving, adventurous, fearless, smart, mischievous, social, amazing and totally gorgeous little boy we have been blessed with. I never would have imagined our River.
I know you’re feeling a huge sense of loss – I get it
I may not have the initial diagnosis in common with you, but something I’m sure you are feeling is a sense of loss. I know as I felt this loss myself, and I can only compare it as a sense of mourning for the life that you had pictured in your mind for your child. A sense of mourning the life you thought they were going to have. That life that you had let yourself imagine doesn’t exist anymore and it’s a deep feeling of sadness, it can even be compared to a death. We’ve lost the life that we thought our child would live, it’s just not going to happen and that is hard to bare. We all do it as parents, picture a life of milestones, education, careers, marriage, children, etc. We picture our future grandchildren and the life that society has decided we should all lead. We all have our children’s lives practically mapped out before they are even born and when we feel like it’s been ripped away from us it hurts. It hurts and it takes time for those feelings of loss to heal, it takes time for us to move on from those emotions.
What I can tell you though is this. You will move on and it is all going to be ok, in fact, it is going to be incredible. The loss you are feeling right now will pass. The sadness, the hurt, the fear and the pain will all pass and you will see a light. You will get to know your baby and you will soon come to realize what a blessing you have been given. You will soon learn that you are one of the lucky few, and that your child is exactly what you never even knew you wanted or needed. You will get to a point where you won’t want to change it even if you could.
It won’t be easy, but the best things never are
I’m not for one minute saying it’s going to be easy, it won’t be. You will face hurdles and barriers, and you will have days where it all feels too much. You will worry about your child’s future and you will worry about their acceptance within society. You will worry about their health and you may face dark periods where your child faces illness. You may feel frustrations regarding development and you will without a doubt feel a frustration about the struggles of receiving services they are entitled to. But I promise you this, those worries and fears are nothing compared to the sheer joy your child will bring to your life. You will feel an overwhelming sense of pride and admiration, and you will become their biggest supporter. Your child will show you the world through new eyes and you will become a better person, becoming more accepting of others and really seeing a person for who they really are. You will embrace differences and you will want to teach others to do the same, you will want to make a better society for your family. You will become stronger than you ever thought you could be, you will find a voice that you never knew you had and you will fight with every last breath you have to create a better world for your child. You will not be able to imagine your life any other way, or yourself on any other journey in life. Most of all you will feel lucky, and you will wonder why the hell you ever felt so lost or so sad.
So New Mum, my advice to you is this
Feel exactly what you need to feel and feel it without guilt. This is a journey for you, and it’s not an easy one. You need to feel these things in order to process them, deal with them and come out the other side. But you will come out the other side, you will get stronger and your life will be beautiful. Your child will shock you, teach you and you will burst with pride every single day. Your life will be filled with love, laughter and adventure and you will adore your child. You will love your child, you will love your life and you will love Down syndrome. You may not believe me right now, but one day you will love Down syndrome. It is part of your child, and it is the part that will show you what life is really about and what is really important. Believe me when I tell you this, one day it will be a part that you wouldn’t want to change in a million years.
Good luck and Love Always
From a Mum who is a little further into this wonderful journey.