Family

If you look in the dictionary, you will find the definition of family is referred to most as a group that is related by blood or marriage. As you read further down the list of definitions, you will find a definition that states a family is a group of things related by common characteristics. In the world of chronic illness, the word family can take on many definitions, leaving me to ask the question: How do we determine who becomes a part of our family? Through our journey with PI (Primary Immunodeficiency Disease), I have found that my daughter and I have several families, some of which might not fall under the traditional definitions.

Family of Non Believers

Although we have been on this journey for 9 years, we still have those, friends and relatives alike,  that do not believe that this disease is real. I try to look at things from their perspective and I do realize how it is that they come to believe the way they do. PI is a rare group of immune system disorders with very common symptoms. The commonality of those symptoms is what makes it difficult for the mainstream public to understand. I get this! In the beginning, it was difficult for me to understand as well. My daughter kept getting sick with common illnesses such as ear infections, strep, pneumonia etc. She was in daycare thus exposure to the many germs that young children can come in contact with was large. It was easy to dismiss the frequent bouts of sickness as "a child in daycare is going to get sick". When we were finally referred to an ENT,  we were made aware of a possibility, that blood work later confirmed, that this could be more than just "a child in daycare is going to get sick" thing . People will believe only what they know and understand. It took many hours of research for me to understand and come to terms with what this disease meant and that this disease could become a life long battle for my daughter. I don't expect everyone that we know to do this same research just to understand what my daughter's diagnosis means. If PI garnered as much research and publicity in the mainstream media as other diseases such as the many different types of cancer, Alzheimer's, Parkinson's and many others, I believe the thought that such a disease as PI is not a real diagnosis would go away and the family of non believers would begin to get smaller. While I do not mean to imply that the diseases I have listed above are not worthy of publicity, it is the fact that the research and publicity they have received have made them recognizable terms within the general public and people understand now how they affect the patient and the caregiver. Ask some stranger walking down the street what Primary Immunodeficiency Disease is and the answer will be: Huh? Never heard of it. This is what needs to change and also what makes this group of family members important because they keep me motivated to teach and preach the world of PI.

Family of Medical Professionals

The immune systems affects several of the body's organs thus making it necessary to build a trusted family of medical professionals. This disease makes a patient more susceptible to common infections as well as other diseases such as Leukemia and Lymphoma and autoimmune diseases like Lupus, Rheumatoid Arthritis and many others. I mention these specifically only because these are the diseases that my daughter has already been tested for and is on the "watch list" to be monitored against. The list of doctors that she sees is ever growing. This list, so far, consists of a pediatrician, ENT, gastroenterologist, orthopedist, rheumatologist, psychologist, and immunologist. Some PI patients have more specialists while others have fewer. The fact remains, however, that these people become a big and important part of our family. Without this family of  "ologists", my daughter would not be healthy. I don't even want to think of where she would be without these wonderful family memebers.

Family of Social Networking

When a diagnosis is made of a rare unknown disease, a patient or caregiver is left devastated by the news and the search for information begins. With the Internet, there are many articles to be found with information on just about everything but just how reliable is all that information? The information gained from trusted resources is invaluable to a patient or caregiver. The information provided by such organizations as the NIH, NORD and IDF, to name just a few, is priceless. But who is a more trusted resource of information than a fellow patient or caregiver struggling with the same disease. Social networking has allowed these otherwise strangers to get "connected" and become a part of our family. I have gained as much knowledge from our social networking family as I have our medical professional family. This family can help guide me when something arises that I am unsure about. I can post a question and instantly get advice as to how they have dealt with similar issues. I can read other posts to learn what may lie ahead for my daughter thus allowing me time to prepare for the "what ifs". This family has taught me how to maneuver through the medical world and stay on top of this disease and has helped me to gain the knowledge and strength to help my daughter get through each illness that comes her way. This family, like the medical professionals, is an important part of our lives.

Family of Compassionate Friends

Everyone has friends. There are friends and then there are friends who truly understand our circumstances. This group of  family members consists of those people who are not related by blood or marriage but have a place in your heart as if they were. This family is made up of the people that have taken the time to read, research and understand the disease they are now connected to through friendship. This family is made up of the people that have taken the time to lend a helping hand or have offered a shoulder to cry on or just the time to allow a patient or caregiver to talk, yell or scream and have a moment of breakdown without judgement. These members of our family find ways to uplift and keep us strong. This family gets involved and helps keep the focus on fighting this disease and providing an emotional outlet when needed. I could go on and on about what this family means to the patient or caregiver but there is not enough words to describe their importance.

True Family

This family is the one that is closest to us. Our husbands, wives, parents, grandparents, brothers, sisters, aunts, uncles. This family is our step parents, step brothers, step sisters, our partners and our significant others. These our the closest members of our overall family. This group of people, like the family of compassionate friends, sees us at our worst and at our best and everything in between. They are right there beside us every step of the way. They celebrate the victories with us and they console us with our defeats. They are the first ones we reach for when times are good and when times are bad.  This group is our first line of defense against this disease. Without this core group of people, life with a rare chronic disease would be a much more difficult road to travel. Their love and support is unconditional which makes them the most important of all the families.

As you can see, family can mean different things to different people. This is our family and I love and treasure each and everyone of them. From the Non Believers who keep me motivated to educate and promote awareness, to the medical professionals who use their skills to care for my daughter, to the compassionate friends who provides the focus and emotional outlet, to the True Family who keeps me grounded and my spirit alive, our lives would not be complete without any of them.

How Do You Do It?

The comment "Girl, I don't know how you do it." has been said to me many times. So I decided to respond to that statement in this blog.

As all parents know, parenting any child has it challenges. Parenting is filled with ups and downs, right ways and wrong ways. None of us get it right all the time. We all make decisions every day to help our children be happy, healthy and successful. Parenting a child with Primary Immunodeficiency Disease isn't really that much different than parenting a "normal child" when you look at the whole picture.

When my child was a baby, I changed countless diapers and got up in the middle of the night for the middle of the night feedings and took my naps when she napped, just like any other parent does. I doted over her and shared her pictures to all that would see, just like any other parent does. I have been the dance class mom, the soccer mom, the softball mom and the myriad of other activities that a child can enlist in, just like any other parent. I have sat with her and helped with homework and have discovered that I, in fact, am not smarter than a 5th grader. We play with them, we do projects with them. We are their chauffeur to their many activities and birthday parties. We become their doctor and nurse in times of illness. We take care of their needs and most of their wants. We laugh, we cry, we worry, we love them with all that we have. We do all this because of our love for our children and our deep desire to teach them the things they will need in order to face the world on their own. So you see, when you look at the whole big picture, my job as a parent is no different than anyone else.

One of our projects while at home recovering from strep.

It's only when you break that big picture down to smaller snapshots that it changes a little. I have snapshots of helping to hold her down to have IV's put in her arm because she is sick with pneumonia, but I hold her down because that's what is needed to help her get better. I have a snapshot of her being carried off for surgery to put tubes in her ears because she has had 7 ear infections in 4 months, but I do that because it will make her better. I have a snapshot of her being wheeled away to have her tonsils removed because she has had countless bouts with strep, but I do that because it will make her better. I have snapshots of the countless blood draws over the last 9 years but I do that because I know its how her health is monitored to make sure I can do what's best for her. I have snapshots of more hand sanitizer and disinfecting sprays than any one human should own. If smell could be incorporated in a snapshot it would smell of bleach, the ultimate house cleaning disinfectant. There would be many, many snapshots of doctor visits and ER visits. There would be snapshots of daily medicines. Snapshots of meetings with school administrators and teachers about 504 Plans. I do all these things because I know it's what will help her get better.

The statement, "Girl, I don't know how you do it", should actually be directed at my daughter, for it is she that gets sick all the time. It is she that gets stuck with the needles all the time. It is she that has to go to the doctor and ER all the time. It is she that has to take six medicines daily, every day. It is she that has difficulty waking up in the morning because her head and body aches all the time. It is she that, even though some days are harder than others, she gets up and she gets through the day, every day. You see, she is the amazing one to endure the life of chronic illness. All I do is what any other parent would do: I support her in any way I can. I remind her to take her meds. I drive her to the doctor or ER. I am there for her when she cries because some days it gets a little overwhelming. I do what ever is needed at any given time.

When placed in a world that decisions have to be made daily to protect your child, a parent will do what is necessary to protect their child without a second though about it. Even though, my snapshots may include much more medical mumbo jumbo than the normal family, I do no more for my child than any parent would do for their child if faced with the same circumstances. Only our daily routines are different but the ultimate goal is the same: you do what you need to do to raise a happy, healthy, ready to face the world child.