I parent, you parent, we all scream at our kids

No two parents have the same style. They shouldn’t. What works for me isn’t going to work for everyone. I have always tried to keep the lines of communication open. My kids know they can come to me with anything and I won’t yell or have a knee jerk reaction. I may not be happy, but I always try to get the facts before getting upset. The more severe the offense, the more time I take deciding how to handle the situation.

I am also open with them about my past, in the hopes they won’t repeat my mistakes, but learn from them. I make a point to try and adjust the things my parents did with me that clashed with my personality. If one technique doesn’t work I don’t keep beating the dead horse, I try a mule. Or a carrier pigeon. Or…you get the picture.

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My favorite picture

I have friends that take a quite different approach. They manage the details of their kids’ activities, monitor their social media, keep a tight rein on their schedule and do their best to keep them away from bad influences. That works for them. It would never work for me.

With all the medical and emotional challenges we face, I don’t have time or energy to micromanage my children’s lives. I trust that I taught them well enough they can be responsible. I have gradually given them more autonomy, remembering how I was when I no longer had my parents watching my every move. I don’t want my kids to suddenly have freedom without the experience and judgment to handle it.

If you have teens, do you trust them? It will only be a few short years before they have to make their own decisions. Will they be ready? If you aren’t sure, it might be time to ask them some tough questions. Questions about sex, drugs, alcohol, choosing friends, being responsible with their time and money, all those things that teens and adults face.

Do your children confide in you? Do they know it is safe? Are you sure your teens feel they can talk to you about whenever is on their mind, without you judging them or dismissing it as trivial teen drama? Do their friends see you as an adult they can trust?

I’m not so naive as to think my kids are perfect. I know there are things they keep from me. I spend plenty of time praying that God helps them through the consequences of their choices.

But they know I am safe. Their friends know I am safe. They can call me in the middle of the night for a ride home without the Spanish Inquisition on the way home. They can confide in me when they aren’t sure how to handle something their friends have shared. And I keep their (and those friends’) secrets, unless it is something I absolutely believe the parent needs to know. If that happens, I discuss it with my kids before I go to the parents, so they understand why I have to break that confidence. They usually agree with my decision.

I encourage you to ask your kids, wherever their age, some open ended questions and then listen to the answers. Really listen. Don’t judge, don’t try to tell them why they are wrong, don’t jump to conclusions or tell them how they should feel. Ask. Listen. Love them for who they are. Let them see your humanity and imperfections.

And above all make sure they know you are safe. Nobody should be afraid of their parents.

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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.

 

Come to the dark side

I run tech for community theater. You know, turning lights and microphones on and off, playing sound cues, and such. I am in “tech week” for a show that opens Friday. This means rehearsal every day putting all the technical details together. Lights, sound, costumes, musicians, sets, props…anything and everything. By Thursday we need to be ready for a preview audience (what some people would call the dress rehearsal.)

I was at the theater before last night’s rehearsal chatting with the light and sound designers. I am operating the sound board, which for this show means 7 body mics, some sound effects and a few monitors. I asked the lighting designer who was running his board, and he said he didn’t have anyone yet. Starting tech week without a board operator is nerve wracking at best.

I knew a friend of mine is interested in getting involved in community theater, so I called her. She was at the theater a half hour later. She hasn’t actually run a show yet, but the light designer and I could tell just from her writing down cues that she will be more than capable of handling her 300-some cues. I’m excited to work with her, since we get along so well and she is taking a break from handbell choir.

One more person caught in the addicting creative process of the theater…

What just happened?

My son is at church. Preaching. I just can’t wrap my head around this. My baby boy is sharing words that God put on his heart. In public.

He seemed to have a special connection with my dad, but I thought is was just because they shared the same chronic illness. I couldn’t have imagined years ago that he would be following in Grandpa’s footsteps. I know this may not be a vocational choice, but I am convinced God gave him the gift of spoken word.

He has been working on this all week. He asked me enough questions I know he was trying to be accurate in his Biblical references. I got to hear him practice a couple times, and I have to say I was impressed. Not only with the message, but with his improvement in a couple days. I admire his openness. I don’t know too many young men with that kind of insight, let alone the nerve to say it to a room full of people.

I don’t know exactly what God has planned for him, but I know it is something special.

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?