LETTER TO MYSELF ON DIAGNOSIS DAY – 19 years ago.
Dear Vanessa,
This is going to be a wild ride so strap yourself in and hold on tight. The important thing to know is that this ride is not going to be the one that you have envisaged. This ride will be full of highs and lows, but this diagnosis is not an end story, it is actually the beginning of a very beautiful journey.
Your child will teach you and your family more than you ever expect. Your family, friends and community will not isolate you, in fact it will be the total opposite. Your family and your soon to be born baby will have extensive support, love and encouragement. You will be surrounded with a massive network of people who are in this journey beside you. You will have a huge village willing to support you in every aspect of your daughter’s life.
The life of your family will not be destroyed by this diagnosis. There will certainly be some very difficult times and sometimes you will feel that you cannot go on, but you will go on and you will continue to beat every single challenge that comes your way. You will see each difficult time as another challenge, and you will find the strength to get through it.
I am not going to lie, you have a battle ahead, but it is something you can do and you will not ever stop to think that you can’t. You will tell yourself very often that you cannot do this anymore and each battle you beat will show you that you can do it and you will continue to do this.
Your little baby will go through some very hard times. She will have many surgeries and procedures, actually over 31 operations by the time she is 17. These times will test your resolve and push you to the limit. You will wonder how she is tough enough to get through, but she will bounce back each and every time. You will promise her to always fight with her, she never gave in and you as her parents and family will fight just as hard.
The hardest of these times will be when she develops a brain tumour. At this time, you will be sure that you will lose her. You won’t lose her. It will be the hardest time of your life as you watch your daughter go through major brain surgery and lose her ability to walk. This will all be temporary as your warrior girl will pull through and show you that she wants to and deserves to be on this earth.
Your daughter will have a challenge with her eating and drinking and she will never be able to drink any fluids at all. Eating and drinking will be a life-threatening issue for your daughter as she will not be able to have any liquids in her mouth. I know this sounds daunting, but it will come to be just a part of life. It will initially cause you a lot of worry and many hospitalisations but in time it will become second nature and you will all learn to live with this health condition, it will not be a major issue for your family. It will stress others out though, but you will be an amazing educator and advocate for your daughter to keep her safe.
Your little girl will walk and talk (she will actually talk your ears off). She will be a little slower to meet milestones but as the years pass no one even cares at what age your daughter took her first steps or cut her first tooth. She will not be defined by these milestones or at what stage she achieved them.
Your daughter will have some awesome opportunities in life. She will be the face of a major charity in your area. Her beautiful face will be well known in the Illawarra as a KidzWish and Celebrate T21 ambassador. Her face will appear on TV, on advertisements on buses, in magazines, on the news and on You Tube. She will love the attention and thrive in her many important roles.
Your little girl will be so loved by so many. She will be a social butterfly and she will capture the hearts of many. She will be very funny and have a great sense of humour. She will make sure she is the life of the party. Her personality will be very outgoing.
Dance lessons, school, birthday parties, school awards and friends will be no different from your other children. Your daughter will attend all these things. Although undressing herself in dance lessons will become a regular event.
Your daughter will meet so many famous people and she will show them the amazing things that can come with having Down Syndrome. She will share her story and educate people. She will show others the amazing resilient young lady she is.
Your thoughts of the future are very different to what your future will be like. Most of your thoughts now are negative and sad. Your life will have periods of time when things are negative and very sad but the majority of life will be very happy. Your resilience and ability to cope will be phenomenal. You will look back yourself in years to come and wonder how you got through and your ability to continue to do so is a testament to your strength and resilience. These are skills you may not have developed without the challenges you have faced.
You will reflect regularly and be absolutely amazed at how your little girl has grown and how quickly time has gone. Right now, you cannot see the joy and happiness that having a child with Down Syndrome can bring but I promise you the joy and love will be immeasurable.
You will not have a lot of time to reflect on the diagnosis of Down Syndrome in the beginning as your daughter will be very sick. The first four years will be spent in hospital and you will roll from one day to another, always being beside your daughter fighting. As the years pass though, you will do a lot of reflecting, learning and educating others. You will make a big effort to educate others on just how amazing life can be living with someone with Down Syndrome.
Not right now but I can assure you, life gets easier, more beautiful and more fulfilled. You will adapt, change and evolve without even stopping to realise. Life will just go on with the changes you need to make and in time these changes are no big deal.
I must warn you, you will become a lioness and protect and advocate for your daughter like you never knew you could. You will never take on any battle without giving it your all.
If there is one thing you can take away from this letter, I want it to be this. Life will be much different to what you are currently imagining, it will not be all gloom and doom. Your daughter will be funny, caring and friendly. She will teach you more lessons than you realise. Life will be happy, and you will be so very proud of each and every achievement of your daughter.
Your daughter will have many friends, more than you can handle at times. There are really some amazing things that come with having a daughter with Down Syndrome and you will realise, at times it is easier than having neurotypical children, especially during the teenage years.
Don’t waste time wallowing and focusing on the negatives, you will miss so many of the positives. It really is an amazing journey. You got this.
Kind regards
Future Vanessa.
Written by Vanessa,
Ambassador Kiara's Mum
