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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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.

kids5

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.

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.

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.

Tolerance? No thank you.

I hear people talk about tolerance all the time. We should be tolerant of differences. We should tolerate other races, religions, body types, abilities, lifestyles, etc. Well I don’t want to tolerate these things. I want to embrace them. These differences are what make us unique. Interesting. Human.

Do I wish everyone believed in Christ? Of course. But if they don’t I love them anyway. Do I wish people treated all races equally? Absolutely. I was raised colorblind and wish the world could operate under that paradigm. Do I think others should be accepted even if we don’t share or agree with their lifestyle choices? Yes. In spite of my feelings about their choices, it is not my place to judge. I am called to show them God’s love. I wish the things that divided us were not things that cause so much hatred and fear. I wish our worst arguments were about which baseball team was the best, or whether we liked the ending of a certain movie, or who should have won The Voice.

I have to admit, though, there are some things I cannot tolerate. I also must confess I used to do some of those things. Things like racism. Bigotry. Hatred of someone you don’t understand. Judgment of choices that don’t align with your beliefs. Condemnation of someone whose struggle isn’t apparent at first glance. Pushing your agenda on someone else. I try not to do these things and ask if you see me doing them, call me out on it. Preferably privately and tactfully.

I know I have a certain naïveté that others may not like. Some may think I am too trusting, or unaware of the struggles of those who don’t share my privilege. That’s ok. I probably have struggles they aren’t aware of. That doesn’t mean we automatically have to take sides. I am not “for” or “against” any group of people just because they belong to that group. Ok, maybe there are one or two groups that I hate what they stand for. But I don’t hate someone for who they are, especially if it is not something they can help. And that’s all I ask of others. Accept me for the creative, impulsive, melancholy, socially challenged, single mother and sports fan that I am. No judgment, no hatred. Hugs optional.

What college do you go to?

My daughter just got back from getting the oil changed in my car. My 16 year old daughter. She told me about a young man who struck up a conversation with her. He started with her Texas Rangers shirt, eventually asking where she attends college. Did I mention she is 16?

She is quite a beauty. Inside and out. After what she has endured in her short life I’m not surprised. Her parents divorced, her brother has a chronic illness, she has anxiety, her mother (that would be me) and brother have ADHD and she lost 2 of her grandparents in a couple years time. She is hypersensitive and hypermobile. Translation: she can taste medicine that is supposed to be covered with flavoring and has super loose joints. Her sense of smell is also very acute. I feel sorry for her if she ever gets pregnant and has to walk near the meat section of a grocery store.

For now I will enjoy having her at home, still volunteering to run my errands. I know that all too soon the college question will have an answer.

My baby girl

My baby girl