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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Blessings in Disguise

We’ve all heard the saying, “The Lord works in mysterious ways.” People keep saying it because it’s true.
For over a year now, I’ve been trying to make a certain change in my life that just wasn’t happening.  For one reason or another, God kept closing doors. The one time it seemed to be an urgent need, He provided another solution to the urgency. Because of this, I have been patient, looking for solutions regularly.
Recently a solution practically fell in my lap.  Through a course of events, and a little nudging from the Holy Spirit, my son was the broker for an act of kindness that our family gave to one of his friends. Although it was not a big deal for us, it meant a lot to the friend.  What I didn’t realize was that it would turn into a big deal for us, providing a solution to that year-long quest. 
After we made the initial gesture to the friend, I felt God telling me to take it one step farther. This next step was one that most people would think is completely illogical, but I trusted God. During that conversation with the friend, we both cried, hugged and talked about options. Immediately I felt a sense of peace that I haven’t felt in a long time.
She accepted the offer, and in doing so managed to open that door that had remained closed for so long. There is one other step to take before we can walk through that door, but God has already shown me the way to navigate that brief delay.
By doing what I thought God was telling me to do for someone else, He provided me with a blessing I have waited for over a year.

December 21, 2008

Today is a bittersweet anniversary. Seven years ago our family joined an exclusive club that nobody wants to be in but has the most wonderful people on earth.

We have laughed and cried. We have felt joy and pain. We have had moments of complete despair and of grateful thanksgiving. We have met some absolutely wonderful people in the most devastating circumstances. We have been encouraged and have encouraged others.

Our family, like so many others, had a trial by fire so to speak and came out victorious. I asked my son yesterday how he deals with the constant pain and he said it was a supernatural God-given strength. I believe my daughter and I were given a similar mental strength to live the lifestyle that comes with having a special needs family member.

We have all had an education we didn’t want. We have learned medical jargon, coping skills, accommodation law, pain management, and how to maneuver the maze that is public school for differently-abled students. We have gained extraordinary patience, empathy, endurance and flexibility. We have become closer to each other and to God.

I would never wish this journey on anyone, but am beyond thankful for the friends I have made along the way. I have fond memories of a weekend this summer with a small group of these friends in New York City, thanks to the research efforts of the Novartis pharmaceutical company. I frequently spend time online with these friends and others discussing the joys and trials of life with chronic medical issues. Many of us have come close to losing our precious children to a devastating illness that most people aren’t even aware of.

If a nickel was donated to research every time one of us heard, “She is too young to have arthritis,” or “He was fine yesterday,” or “Isn’t she over that by now?”, scientists would have found a cure years ago.

Life is full of contradictions. Life with a chronic illness is no exception. Today I mourn the loss of my healthy son but at the same time celebrate the gift of the life we share with close friends who also grieve.

December

The weather was nice today. Like 75 degrees. On December 11.  It’s hard to remember Christmas is 2 weeks away when I don’t even need long sleeves and the thermostat in the car wants to turn on the air conditioner (although my friends in Australia would think it is chilly for this time of year.)

It’s easy to remember it’s December when I look at my calendar. On top of my regular work, medical appointments and handbell rehearsals, I am running lights and sound for a Christmas play, have a couple extra tech shifts at the church for special programs, and am playing in the handbell choir for 2 services on Christmas Eve. Whew!

If you are anything like me (and half the general population) it’s easy to meet yourself coming and going in December. I (and the aforementioned general population) also have to consciously carve out time for prayer, relaxation, meditation, or whatever you to do keep yourself centered and sane.

No matter what keeps you busy this time of year, make sure to spend quality time with those you love, and to take that time for yourself. Don’t get so caught up in the busy-ness of the shopping, decorating , cooking and celebrating that you find yourself exhausted before the holiday arrives.

Well, the play is starting. Catch you later. After some quiet time.

 

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.

Healthy is all relative

Are you healthy? Is your family? Do you know what healthy really means?

I wish I had appreciated the health our family has lost. My son used to be an excellent athlete whose biggest worry was whether his uniform and water jug were clean. My daughter used to be a dancer whose toughest decision was whether to take jazz or hip hop. I used to enjoy the American dream of a husband, 2 kids and a house in the suburbs. All this was before my neurological differences caught up with me. Before my daughter developed crippling anxiety. Before my son was attacked by his own immune system.

Now we see healthy as a day when he doesn’t need pain medicine to get moving. When she can go to school without a panic attack. When I can talk myself into going to work, then stay focused enough to get there. Healthy is a week when I spend more time at work than in a doctor’s office.

To some, poor health might be having a sore throat for several days, spraining an ankle, getting the flu, or being fatigued from too many short nights. I don’t want to minimize those challenges, especially if you aren’t used to anything less than perfect health. If the worst you know is a broken leg, then a broken leg is pretty serious. I wish the worst I knew was a broken leg.

Whatever your circumstance, take the time to appreciate the abilities you do have. I am grateful that we function as well as we do. That we have proper medical care. That we have insurance to pay for necessary medications. That I have friends and family I can count on. I know it could be much worse, and I thank God it isn’t.

Fire in the hole

A lot of my friends and family know that a family in my neighborhood had a house fire Monday night. OK, technically it was eeeeaaarly Tuesday morning.  But I hadn’t slept yet, so it was still Monday.

We are friends with this family. We go to the same church, our kids are friends, and we see each other sometimes at community events. We know each other well enough to trust each other with our kids, so naturally they knocked on our door at 1:00 in their pajamas. (Don’t your friends do that?) Little brother was actually wearing just his Spiderman undies, carrying his blanket. The kids ended up spending the night with us, and I was glad to do it. This family didn’t know what condition their home would be in, the least I could do was take in the kids. Fortunately the damage was minimal and should be repairable.

Growing up my biggest fear was a house fire. Maybe because of the stupid movies they always played during fire prevention week. Apparently they were designed to scare you into making an escape plan and other preparations. This was before too many people had smoke detectors. Monday was the closest I have actually come to a house fire, and it was close enough. Even after taking a shower and changing clothes, I still smelled like smoke on Tuesday. It’s no surprise the firefighters told my friend that simply washing their clothes wouldn’t get out the smell.

When you are in crisis mode, most people don’t do a lot of deep philosophical meditation, so it wasn’t until Tuesday that I stopped to think about how God laid things in place well before Monday. My kids are teenagers, but we happened to have a pint-sized tshirt in our “give away” area so Little Brother had something besides Spidey to wear. Not that it bothered him. We had considered moving over the summer, but didn’t. This meant we were close enough that mom didn’t have to worry about the kids. My son and I were both having trouble going to sleep, so we heard the knock on the door. My kids only attend school in the afternoons, so getting to bed a 3 am wasn’t a big problem. Our kids all knew each other, so Little Brother hardly knew anything was wrong. A few more examples came to mind, but my memory has a slow leak, so they are long gone.

I asked my friend what they need, and she didn’t know yet. I’ve been there, and it seems like I always think of something a half hour later. Fortunately she has lots of people willing and eager to help when she figures it out. And me? I’m thankful nobody was hurt and the damage wasn’t worse. And that most of the 2-3 dozen firemen were standing around with nothing to do.