Seventeen years ago today, my first beautiful baby burst into the world, crying and crowned with the red hair her father had dreamed of. After years of miscarriage and infertility treatment, everything about the pregnancy, delivery and first few years of her life were magical. I slow danced and walked the halls with her daddy for seemingly endless hours as we tried to move labor along. I still remember that feeling of something akin to wet, hot, rubber being laid on top of me once she was delivered. It was all surreal.
While she had some bumps in the road medically in her youth, I would tell you it wasn't much more than the average child faces. When lung troubles in her toddler years could have become worse, they instead improved over time. In fact, for many years of her life, she used to impishly brag to people that she was "the only 'normal' person in our family."
Then she turned 15. She suddenly started developing some pain. We saw the pediatrician about it, and he had a good, pedestrian-type remedy to the discomfort. We followed through with it. Then the pain began to spread. In the interest of her nearly-adult privacy, I will withhold further details. However, suffice it to say that we suddenly found ourselves repeatedly visiting a specialist for our last remaining "typical" child.
- You are not alone. Although it seems more isolating to me to have an older child diagnosed, because many of these disorders are so insidiously invisible, there are many other families going through this with you. For example, an estimated 300,000 children in the United States have some form of Juvenile Arthritis*. Your challenge is to plug into these other families walking the same journey for support. The sooner you make those connections, the more empowered and less isolated you will feel.
- You will become even more of an expert on your own child. Since birth, no one has known your child as well as you do. Even if a diagnosis comes later into their childhood, you have likely advocated for your child with playgroups, schools or other outside activities. This diagnosis is just another area where you will become an expert. Take note of how it behaves in your child, what works, what aggravates things. And right from the start, involve your child in their own care.
- Our children are fortunate to be born at such a time as this. Although medicine is FAR from perfect, medical advances in this country, in this era have never been more remarkable. I find myself repeatedly thanking God that if any of my children had to have their diagnoses, at least it is at this point in time. What researchers know about DNA and the behavior of diseases these days is amazing. We can be grateful for therapies and treatments that exist to help our children.
- Social media has become a FANTASTIC resource once a diagnosis has been received. Not only have I formed friendships and found support as a mother through places like Facebook, Twitter, and other private groups, but these my children have too. Depending upon the age of your child, they may find a great, supportive friend with the same diagnosis through chat groups on social media.
- Don't believe everything you read on the internet! While social media is helpful and resources at the touch of a finger tip abound, not everything is reliable on the internet. People will also freely share magical treatments that worked for their child. That doesn't mean those same therapies will work for yours. DEFINITELY do your homework, but filter what you read online with the understanding that it is not necessarily true or accurate.
- Take heart! It will get more manageable. Notice, I did not say "easier", but rather "manageable". Hospitals and doctors can be frightening, intimidating places to be. You will find your own groove and baseline with this diagnosis. Things will become more familiar to you, and fear of the unknown will not oppress as heavily as you gain some knowledge and experience.
- Your child still has a bright future. Remember, your child has this diagnosis, it doesn't have them. Help your child to create positive goals and dreams for the days ahead, knowing that adaptations and accommodations are available if needed.
PRAY: LORD, this diagnosis isn't what I expected. Comfort my heart as I deal with the shock. Grant me wisdom as we move forward. And empower my child to be everything You intend.
~ Barb Dittrich
*Taken from "Diagnosis and Disease Process: What is Juvenile Arthritis?" via the Arthritis Foundation.