What Do I Do Now? It Takes A Village.

As parents, we watch our children growing up and we think of how we would like their lives to be. We often think of their first day of school. We think of who their first boyfriend or girlfriend may be. We think of high school and prom. We think of their first car and where they will go to college. Who will they marry, how many children will they have? While they are still babies, we have already thought of all the wonderful possibilities that life will bring to them.

One of the worst things a parent can ever experience is a doctor telling them that their child has a chronic, incurable disease caused by a genetic defect in the immune system, primary immune deficiency. A disease that renders their body at greater risk for infections of all kinds, big and small. A disease that even the simplest of colds could potentially turn into something more serious such as pneumonia. A disease that causes repeated infections that increases the risk of permanent organ damage, cancer and even death. There truly is nothing worse than being told your child is "sick" and may continue to be "sick" the remainder of their life.

So what does a parent do when given such news? The first thing you do is cry. Then you cry some more. That's right, you take a short time to have a pity party just for you and only you, it's ok. Life will be changing and you need to harness all the energy you have to do whatever needs to be done.

Next, the questions start popping up in your mind. Why did this happen to "my" baby? Was it something that I did wrong?  What does this diagnosis mean? How will I keep them from getting sick? There will be many questions that you will ask yourself but the most important one will be WHAT DO I DO NOW?

The most important thing you can do is educate yourself and everyone around you. You have already experienced the long road to diagnosis. For some, diagnosis can come fairly quickly; for others, it can take several years. I'm sure you have already experienced some of the stigmas associated with chronic illness. Although I truly believe most people do not realize that their response, or non-response to what you and your child are experiencing can be hurtful, it really can leave you feeling isolated and alone.

You are about to become a doctor, a nurse, a counselor, an insurance expert and advocate by default and it will be so important for you to know and understand your child's specific diagnosis. You will need to learn what steps you need to take to help keep your child healthy. You will need to learn what your child's needs are going to be in the school setting and meet with school administrators to educate them on those needs. Know and understand your child's right to an education. Work with school personnel to implement a healthcare plan for your child while at school.

Family and friends will also need to know and understand the needs of your child. Grandma needs to know that if she is sporting a simple cold; she may need to postpone a visit until it has been resolved. Your child's friends need to understand the importance of hand washing before and after play. Your own child needs to understand what they need to do to help themselves as well.

Caring for a child with primary immune deficiency can be very challenging. You want to keep them healthy but also want them to be a kid. Surround yourself with supportive people. People that will listen when you feel like screaming. People that will offer thoughtful advice in times of doubt. People that will rejoice with you when things are going well. People that will lend a shoulder to cry on when you feel you have lost control. Most of all, surround yourself with people that will help you help your child stay healthy and be a child all at the same time. It was said once that it takes a village to raise a child; no statement could ever be more true when that child has been diagnosed with a primary immune deficiency.