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. 

photo credit https://www.flickr.com/photos/48745248@N00/

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. 

Chemo times 2

Some of you have asked about my kids being on chemo. They don’t have cancer, they have juvenile arthritis. JA can cause excruciating pain and deformalities, steal childhoods, bankrupt families, destroy marriages, cause blindness, and even kill. Although for different reasons, the difficulties my family has faced are not unlike the problems of cancer families, but without the public awareness.

The public’s knowledge and perception of cancer and juvenile arthritis is a touchy subject for the JA community. We know that arthritis can be just as life altering, if not as deadly, as cancer. We also know the general population is not aware of the similarities. It is hard to educate without sounding like whiny, self absorbed divas who want special treatment for their kids.

While both diseases have periods of remission and risk of recurrence, one way or another cancer treatment usually has an end. For many JA patients, treatment is a never ending battle. I have heard heartbreaking stories of JA children who shared infusion rooms with cancer patients and constantly asked their parents when it would be their turn to ring the bell announcing the end of their treatment. For them there is no end.

The mortality rate for cancer is definitely higher. I am thankful that I have not watched my child deteriorate, knowing there would be no recovery. My heart aches for parents who have lost a child. Even in remission, recurrence is a continuing threat. Parents of JA kids in remission have that same fear.

A friend of mine shared recently that her daughter was in remission. I joked that she was asking for trouble. A few days later she was back at the hospital. I felt bad, like it was somehow my fault, though I knew it wasn’t. That friend doesn’t blame me, but the pain is still there. JA parents hurt when one of “our” kids suffers, and we rejoice together on good days.

I won’t pretend to understand what it is like to have a child with cancer. But I do know what it is like to have a child in ICU, their sibling wondering whether they will recover. Both my kids have lived that hell on earth.

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.