A letter to a new mum… whose baby has Down Syndrome

Dear new mum

Before I say anything about Down Syndrome, I firstly want to congratulate you on the birth of your beautiful, precious baby. Your baby is unique and special and perfect – just like all the other babies who have been born today.

Instead of feeling the usual joy and excitement after the birth of a new baby, you may also be feeling a combination of many other things right now. Confusion. Sadness.  Fear.  Grief.  And maybe, while you are holding your sweet baby, you might feel some guilt for having all these terrible thoughts and feelings.

Chloe and I in hospital a couple of days after she was born

Let me tell you this muddle of emotions that may be overwhelming you right now are completely normal.  And they are completely necessary.  It’s all part of the grieving process and you need to go through this so that you can come out the other side a stronger and wiser person.  Being told that your baby has Down Syndrome (or any condition for that matter) can be a very scary thing.  It’s ok to feel like your world has fallen apart and that you might not cope with this – especially if your child has other health issues that you need to contend with.

Chloe has been an inspiration to me

But let me reassure you how these feelings will soon change and how your life will also change… You will cope.  You will love your child more than life itself.  You will move on.  And you may not believe it now but you will be happy again.  Life will be incredible.

Excited and oblivious to the news I would be receiving two weeks later

When I was pregnant, I used to imagine what my perfect little bundle was going to be like.  Would she have my husband’s eyes?  Would she have dark hair like me? I would look into the future and think about all the dreams I had for her.  All this came crashing down when I was told that the baby I was expecting had Down Syndrome.  Nobody wants their child to have Down Syndrome.  No one would ever wish for this.  But in time, you will learn there is a lot more to life than what you thought you knew.  You never knew the half of it.  And soon, you will build all those dreams you had for your baby right back up again – not because you have to – but because you will want to.

After receiving the diagnosis, you may want to join some support networks, read some books or get in touch with other families who also have a child with Down Syndrome.  What ever you choose to do, the positive stories you hear will elate you and make you feel better about your new found situation.  You will look and think “that’s not so bad. They look like normal people, they are happy and their kid is really very cute – what was I worried about?” And the sadder, more challenging stories and textbook derived information you might come across may scare you and put you back on that spiral of sadness and fear.  And then guilt.

You need to know that your baby’s journey is their own.  Like ‘typical’ children, no two children with Down Syndrome are the same and like any ‘typical’ family, you will create your own story, which will be both beautiful and challenging.  Life is filled with highs and lows and Down Syndrome is just a part of that.  It is what it is and you just make the best of it. The Doctors and social workers may have already told you that the future for a child with Down Syndrome has never looked brighter.  They are right!  There is so much support and assistance available to give your child the best opportunity possible to live a happy and fulfilling life.

If you are worried how this diagnosis will impact your other children, don’t be.

Sisterly love!

Your other children will show you exactly what unconditional love is all about.  As time goes on and your children grow together and develop their special bond, you will wonder what you were worried about.

There is so much to learn about the world of special needs and this can be quite overwhelming especially if you have little or no idea about it in the first place.  Like all new mums you will also learn about your new baby – this is the best and easiest bit.  With all this learning, you will also find out who your true friends are.  The love and support you and your baby will receive from family and friends will blow your mind.  The world is an amazing place and we all have so much to be thankful for.

You will also learn a lot about yourself.  You will discover a deeper love, happiness and patience within yourself and a new found gratitude for everything you have in your life.  You are so unbelievably lucky.

Having a new baby will keep you very busy and as time passes, you will one day realise that it has been days since you last cried.  And then weeks.  And then months.  Happiness and pure joy will creep in when you least expect it.

Our adorable girl

And if you haven’t already, one day very soon, you will look at this child with new eyes and you will see how perfect they really are.  You will realise their diagnosis does not and will not define them.  I will not fool you, things may get tricky at times and you may feel sad and scared from time to time.  But it will never be like what you are feeling now.  What you are going through right now – being told that your child has Down Syndrome and adjusting to this new life ahead of you is the absolute worst part of this whole experience.  And your beautiful child will be the best of it.

Enjoy your new baby – they don’t stay little for long!! xoxo