Friendship: The Best Thing In Life

This is a story of friendship. True friendship. One that has never wavered no matter the circumstances. One that has endured the many illnesses, cancellation or rescheduling of activities. A friendship that when one is hurting, be it physical or emotional, the other is hurting. This is about my daughter and her best friend and what they have taught me through the years.

They were only about 3 years old without a care in the world when they met. They met in preschool and become the best of friends. They couldn't wait to get to "school" so they could play together. They were inseparable.

As luck would have it, they would be in the same kindergarten class. Their friendship blossomed so much so that it was determined that going forward it might not be a good idea to have them in the same class together. It was heartbreaking to them at the time but we laugh about it now. It seems they were a bit too chatty.

Now they are 10 years old, 5th graders, and beautiful young ladies. Believe it or not, still as close as they were then. They are more alike now than they were when they were little. They enjoy many of the same things, mostly computers and Nintendo DS. They admire each others individual abilities. They watch out for one another and take care of one another. When one is having an issue, the other is always there to help. When shopping, "Do you think she will like it too?" is often the question asked. Another common question is "Can she go with us?" or "Can we have a sleepover?". So as you can probably already tell, I don't just have one daughter, I have two and I love every minute of it.

Their friendship can teach people many things. Through our journey with Primary Immune Deficiency Disease, their friendship has endured. Although disappointment does happen when plans need to be changed, there is understanding.  When sickness is at hand, there is compassion. When there are delays due to doctor appointments, there is patience. Most of all there is empathy for the disease that is a part of not just one, but both of their lives.

Primary immune deficiency doesn't just affect the individual that has been diagnosed, it affects their friends and family as well. Through it all, these two girls have learned that it is better to accept one another for who they are and to love each other in spite of the disease that makes them different. If all people could be as understanding as these two are with one another, the whole world would be a better place.

We should all learn what these girls have been living since they were 3 years old

:
Be accepting to one another for who they are.
Be caring to one another not only in actions but in words as well.
Be considerate of one's situation.
Be understanding and not judgmental.
Be most of all love one another for God made us all, he just made some of us a little different than others.

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.