When you first found out you were pregnant, you were probably filled with emotion — a lot of emotion. Excitement. Anxiety. Happiness. You probably couldn't wait for that first ultrasound to catch a glimpse of your little one. You decided to take part in prenatal genetic testing just to make sure everything was okay. But then your doctor gave you the news that your child has a genetic condition like Down syndrome or cystic fibrosis, or a disability like spina bifida. You're devastated, but all hope is not lost.
Take a Breath
The news you just received about your child's diagnosis is shocking and overwhelmingly painful. My own daughter was diagnosed at just six-days-old with cystic fibrosis. It is quite easily the worst time of your life. Find comfort in your family and friends. Take a breath. If you believe in God, this is where your faith is going to come into play.
Get the Facts
The best thing you can do is to get the facts. There is so much misinformation and there are so many stereotypes out there about children with genetic disorders and disabilities, and you are bound to hear the worst of it from people trying to help, like your doctors. But a lot has changed in recent years and the quality of care, as well as the quality of life, has improved dramatically for children with special needs. Do a bit of research through a web search for an association affiliated with your child's condition. That group will have the most up-to-date information. Knowledge is power, and will help you care for yourself and your child.
Meet the Doctors
You may trust your doctor completely, but she isn't an expert on every disability and genetic condition out there. No one is. Seek out a doctor in your area who is the expert on your child's specific condition and meet with her. She is probably going to be the one who helps you care for your child and she can give you the answers to your questions. Meeting the person who is going to be such a huge part of your life will allow you to find some peace.
Meet the Families
It's a good idea to meet some people who are living with the same condition your child has been diagnosed with. Many families are willing to invite you into their homes to talk about what day-to-day life is really like. It will probably be an emotional task for you, but it will help you to both better understand the condition as well as any changes you will or won't have to make in your life. It may put your mind at ease to see just how well children with the same condition are doing.
Life is filled with unexpected challenges, but having the right information, the up-to-date statistics and the specialists in your corner will help. Remember how much you already loved and wanted this child. Those feelings won't go away and will come on even stronger once you are holding your baby.
