Hey Mama

Hey, mama. Yes, you with the sleeping child. The child you just comforted enough to relax and sleep in spite of the pain. The sick child.

We’ve been there. One day your child is healthy, the next day they have a fever. One day they are playing, the next they have lost their appetite and every ounce of “endless” energy. One day they are exploring their world, the next all they want is you. Mama.

Having a sick child is a game changer. Cleaning is unimportant. Laundry can sit unwashed. Dinner may be late, and will not be what you are used to. Those bills will have to wait. Your sick child needs you. 


We get it. You have to take care of your child. You love and care for them, nurture them, and teach them to become independent.

Suddenly they don’t need to hold your hand. They don’t want help carrying their science project. I can manage my own gear, thank you. Can I go to the party if I’m home by midnight?

But tonight they are your sick baby. You would move heaven and earth to heal them. You would change places with them in a heartbeat. It tears you apart, and you are exhausted. 

You can’t take away the pain. You can’t give them back their energy and appetite. You are helpless, reduced to giving comfort and praying. And trying not to let them see how concerned you are, because that’s your job. Mama is supposed to make everything better. But it consumes you, because a kiss won’t make it all better. 

It doesn’t matter what is wrong or how old they are. It could be the sniffles or a major illness. Teething or surgery. A fever or a severe, debilitating disease. They may be six months old or 22 years. We understand. We’ve been there.

If you are among the fortunate majority, recovery will be quick. Your child will soon be running, jumping, eating and playing again. When this happens, be thankful. Because not every mama bear gets to see their cub get better. Some cubs stay sick. 

If you haven’t been there, count your blessings. Too many of us have. 

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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.

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?

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.

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