To my soon to be adult child(ren)

You are a teenager on the edge of independence, almost ready to leave the comfort and safety of the nest. You can see the freedom of the world outside and long to enjoy all life has to offer.

To you, my protection has sometimes felt like a straight jacket, because you can’t feel my arms in the sleeves hugging you. You don’t see the detours I know are there. You don’t have the wisdom of my years of life experience to warn you of dangers around the corner.

I know because of the unique challenges our family has faced, you are much wiser than your years. But you are still young, and that emotional maturity cannot replace life experience.

I challenge you, as you prepare to make your own way in the world, to remember these 5 things:

1. Everyone has something to offer.

No matter how young or old, everyone has had some experience that you haven’t. They can offer you a different perspective on life or share a unique tidbit of wisdom that nobody else can. It could be the innocent view of a child, untouched by a cynical world, or the calm patience of someone who has learned to stop and savor each moment.

2. Choose your friends wisely.

You can be friendly without getting too close. Don’t trust until you know someone is trustworthy. Don’t follow the crowd because it’s easier than making your own decision. Make sure your friends are a good influence on you, and you are a good influence on them.

3. Don’t give too much of yourself.

It is important to be a good friend and to give back to society. Just be sure you don’t give to the point that there is nothing left. Protecting yourself from harm is just as important as giving and doing good. If you can’t function, how will you be able to serve others?

4. Do what brings you joy and peace.

Do you enjoy drawing? Then grab your sketch pad a few times a week and get lost in the art. Does music calm you or lift you up? Make sure to take a few minutes every day to listen to some favorite songs. Whether your passion lies in animals, dancing, baking, or playing an instrument or a sport, make time for it regularly. This is what takes you from being alive to really living.

5. Don’t be afraid to ask questions.

The only stupid question is the one that you already know the answer. It is easier to ask or answer a question than to fix a mistake. If someone thinks less of you because you asked, they are the one with the problem. Know that they are not wise enough to help you learn, and move on. Never lose your thirst for knowledge.

I can see you becoming a fine young adult with a faith and compassion that are not common in our world. I love you and am beyond proud to have had a hand in shaping who you are. You are a precious child of God and many, many people care about you.

Don’t ever lose the spark that makes you uniquely you.

Photo credit http://elderberry.blogspot.com

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A Community in Anguish

Human society is built around communities. Most communities consist of either family, neighbors, or colleagues, or acquaintances who share a similar journey. One of my communities was rocked yesterday when we learned of the passing of an eight-year-old girl from complications of systemic juvenile arthritis.

Yes, that’s right. Arthritis killed a little girl.  Let that sink in for a moment.

My heart goes out to the family of that girl who had to make the agonizing decision to discontinue life support for their precious child. I have friends who have come close to losing a child, some on multiple occasions. I have watched fathers in tears describing the struggles their child has faced. I have held in my arms mothers remembering their battle with this horrible illness. I have nodded in sad recognition of the difficulties of other families. I, too have cried in unbelieving grief.

When I hear stories of other parents that have struggled to find a diagnosis for inflammation of the spleen or liver, fluid in the lining of the heart or lungs, high spiking fevers, strange rashes, joint aches, morning stiffness, or swollen lymph nodes, I realize how fortunate my family is. We have not had to deal with joint replacement surgery, eye inflammation that can lead to blindness, ridicule and judgment from family and friends who don’t believe the diagnosis, intolerant educators blinded by their ignorance, unavailability of trained pediatric rheumatologists, and a medical system that can make it almost impossible to obtain expensive life changing treatments.

Yes, we are fortunate. In spite of the loss of innocence of both my children, in spite of the dozens of medications my son has had to take in the last seven years, in spite of the hundreds of hours we have spent in doctors’ offices and hospitals, in spite of the thousands of dollars in lost wages, we are blessed. I have never wondered, although partially from denial, whether my son would live to see his next birthday. I have never had to choose between paying rent and buying medication. I have never lain awake nights wondering why doctors can’t figure out what is wrong with my child. I have never feared for my job because of too many medical appointments. Unfortunately, I have heard numerous stories of exactly these concerns.

There are other, less tangible ways we are fortunate. We have made lifelong friends in an instant. We have become stronger and more compassionate. Our family has become closer and more resilient. We appreciate the little things more. We don’t take our health for granted. Our faith has been strengthened.

Many people who learn of our situation feel sorry for us. While I appreciate the sympathy, it is unnecessary. I do not look at this as a curse. Yes, there are painful moments, such as this week. I and thousands of parents like me will never stop fighting for our children. But most arthritis parents have not lost a child. It profoundly wounds all of us when one does.

Somber day

I am, along with the rest of the nation, remembering the terrible events 14 years ago today. Like every American over the age of 20, I remember exactly where I was, what I was doing, and who I was with when I heard the news. I wasn’t personally affected at the time, but I remember realizing that the world my children know will never be the same as the one I knew as a child.

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When life was simple

I am in a quiet mood for other reasons today. My work has been particularly challenging lately, and with all the time I have to take off for medical appointments I have had some long days. I’m getting to old to put in 12-14 hour days all week. Lack of sleep makes me grumpy and makes it harder to deal with my melancholy brain.

Also, The Boy is struggling with his medical condition. This week has been particularly hard on him also. He hasn’t felt good enough to leave the house for 2 days. I wish I could help him, but short of making sure he has things like medicine and water there isn’t much I can do to help. I’m not even home enough right now to give him any moral support.

Today is one of those days I wish we could turn back the clock and fix mistakes we made years ago. There are so many unpleasant things in my life stemming from my poor choices that it just adds to the guilt. I have messed up and my kids are paying for it. Yes, I know every mother thinks that, but my kids really are suffering in some ways. They are too wise and experienced for their ages. They know things teens shouldn’t have to know.

Why can’t life be simple like it was when I was a child?