31 October 2005
Dear Julie,
You are standing in a room surrounded by friends and family at Phyllis’ wake. Your mother-in-law was so excited you were having another baby and you’re feeling very sad she will never meet him. Now you are thinking about that, and standing in a room surrounded by emotional people waiting for a phone call that was going to cause more emotions.
What a day to be waiting for a phone call like the one you were about to receive. 4pm was the time the doctor told you he would ring.
Looking at your watch, you knew the time was getting closer and even though you tried so hard, the nerves were building up so much. Taking yourself away from the crowd was a good idea because you didn’t want to cause a scene and dash out of the room. So, you left and waited on your own for the phone call.
As the phone rang, you stared at it wondering whether you should answer it or not, but of course you did. You knew who it was, and you knew what he was going to say. Call it a gut feeling or women’s intuition. Whatever it was, you knew in your heart what he was going to say, and you thought you were ready.
You were ready to hear the words, but you weren’t ready for the emotions that would rise up. You thought you would be able to receive the news without the emotions that were going to come up.
‘Your baby is a little boy and the tests have shown a result of Down Syndrome, an extra chromosome in number 21…I’m so very very sorry.’ They were the words your doctor told you over the phone.
This was a man that had a very dry sense of humour and was straight to the point at all the appointments you went to with him. You had known him for a long time as he was your doctor with Caleb and Blake. You had never known him to be so emotional, but today he was saying ‘I’m sorry’ many times before the call ended.
With his words, your positive nature kicked in immediately and you began telling him not to be sorry and everything would be ok, because in your heart you knew it would be. Even though you are trembling, I’m proud of you for doing this. You knew things were going to be alright.
The very quick phone ended, and you quickly searched for Mick heart pounding and hands shaking with the news you were about to give him.
When you saw him, no words were needed as Mick knew the phone call was coming too. You both looked at each other and immediately began to cry followed by nervous laughter. You both decided you wouldn’t tell anyone the news today as they have enough to deal with, but as Mick walked away, you knew that wasn’t going to happen.
Within 5 minutes of him re-joining the group of family and friends, people began coming up to you and embracing you with ‘I’m sorry’ and tears.
The confusion in your mind was racing and you and Mick wondered whether going ahead with this pregnancy was the best idea.
The doubts and fear overtaking the positives on what you had already both decided. Natural emotions that cannot be helped and come to us when we least expect it.
The feelings you went through are normal whenever we are facing something unexpected and not really understanding what the future may hold, especially when it is about a baby you will be bringing into the world.
But please don’t feel bad about the emotions you are going through, and don’t torment yourself about feeling negative at times. Let the emotions come and make sure you talk to Mick about them and to your friends. Support is so important.
When the doctors begin telling you about termination, stand your ground early and tell them you have made your decision. They are going to talk to you about termination more than once and you will sit and listen each time until it gets too much. Don’t let it get to that point. Tell them straight away and be firm. You won’t like what you will hear, and you shouldn’t have to listen to it more than once, especially as you and Mick have already made your decision and you have told them this.
Do research and list all the questions you have when you visit your doctors. They may not know some of the answers so tell them the research you have done and list all of the questions. Tell them you would like answers and you would like their support and guidance rather than the negative things they have been telling you.
You will lean on your friend Tina who runs a coffee/support group with other mums who have children with Down syndrome. Every fortnight you will meet together at Tina’s house to chat and talk about many different things. You will also get to see their beautiful children living with Down syndrome.
This support you have is second to none and this group will help you through many moments such as the negative ones with your doctors, while you are pregnant and beyond. Use their support and lean on these ladies often as well as the Down Syndrome Association and join other groups that you can turn to. These people are all there for you and to help whenever you need it. Don’t wait to ask them questions. They are waiting to hear them.
You will be shocked to hear how many people say ‘I’m sorry’ when they hear your precious bundle has Down syndrome. Don’t be mad at them, they don’t know what else to say. Begin educating them early. Tell them you would much rather hear congratulations and talk about when the baby is due and whether you know the sex of the baby and have a name picked out. Tell them this, because it is a baby you are bringing into the world to join your family and you want to celebrate. He will be your son and you are proud. Make them know this. Tell them it’s OK to be nervous and not know what to say but remind them you are having a baby and it’s exciting.
Hearing ‘I’m sorry’ over and over can be very disheartening and you will become angry about it. Don’t let this happen, it is not needed. Just tell those around you it’s congratulations you would prefer to hear.
Don’t worry about what your baby won’t be able to do. These are questions you are asking yourself, but make sure you enjoy the pregnancy and enjoy getting your home ready for him. The room you are creating is beautiful and he will love it. Make sure you enjoy this time before he arrives.
Please don’t worry and cry because the gift you are going to receive in 5 months is going to be one of the best gifts you have ever received along with your other two gorgeous boys. There will be challenges, but there are challenges every day in life and with your children no matter if there is a disability or not.
This little bundle will be your son, teacher, friend and inspiration in years to come not just to you, but to everyone around you. Be as proud as you can and show everyone what an amazing perfectly healthy human being he is.
His brothers will be so fiercely proud and protective and will have a bond like no other. They will always be there for this gorgeous little bundle you are going to name Darcy.
Caleb and Blake will be the ones that keep your positive nature there because they are so excited to meet their new baby brother. You will love how excited they are and include them in all the decisions about toys, his room and clothes you will be getting ready for him.
The doubts and fears will keep raising their heads throughout your pregnancy and you should make sure you talk about these with Mick and with the support group you are part of. Don’t bottle them up and pretend they’re not there.
Enjoy your pregnancy and be ready for the ride of your life with the amazing boy who will join your family.
In years to come, you will become an advocate for this little man, and you will share your journey and messages for other future mums to help support them in them in their journeys.
You may not think so now, and you may be feeling very lost at times, but you will make some amazing connections and friends and be a great voice for Darcy and for others that live with Down syndrome.
Try not to worry too much and make sure you keep asking questions to those that can help you. They are there for you 100% and want you to embrace their support.
Enjoy your new son and make amazing memories with him.
From your future self X
Written by Julie Ambassador Darcy's Mum
