Survival Tip #2: The Internet is Your Best Friend, and Worst Enemy

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When your child is diagnosed with a serious medical condition, almost all doctors will immediately tell you “Whatever you do, DON’T go home and Google this disease!” Um, yeah right. Isn’t that like telling a 3 year old not to touch something fragile? (Besides, if you hadn’t done exactly that, how would you have found me?) I have always been one of those people who wants to know EVERYTHING. I cannot just accept that everything the nice doctor is telling me is accurate, applicable to my situation, and in my child’s best interest. Case in point:

When Pumpkin was diagnosed with leukemia, we were so lost. We had never had to deal with anything like this before, and had no idea what to do about it. Pumpkin was seen by his pediatrician Friday afternoon, and by the time I had gathered Princess and Peanut from daycare, packed an overnight bag for us all, and made arrangements for my husband to meet me at the hospital an hour away from our house, it was too late for a biopsy to be done – apparantly the main hospital lab closed at 4:00 on Friday and wouldn’t reopen until Monday morning. Originally I saw this as a disaster, but over the course of the evening, and the weekend to follow, I came to see it as a blessing. We met the pediatric hematologist-oncologist Firday night. She was friendly, but pushy. She told us several times that we should have made it in to the hospital sooner (our pediatrician had said we had plenty of time to stop and do the things we needed to on the way), and that if we hadn’t made it in when we did to give him a blood transfusion he would have died. She took a slide of his blood and examined it, then came back and told us that even without the biopsy she had seen hundreds of cases like his, and she was absolutely confident that he had leukemia and that we needed to start treatment immediately after the biopsy. We were shocked, blind-sided with all of this information, and so confused. She never really bothered to explain to us what was wrong with him, how it would effect him, what the hospital offered by way of services, what kind of treatment he would need or how long he would need, or really much of anything. We spent that weekend searching the internet for answers, talking to family, and trying to decide what to do. In our research we kept coming back to St. Jude’s in Memphis. We lived near Tulsa at the time, so it was about an 8 hour drive from us. We had insurance, good insurance, but it only covered some of his expenses, not all. The hospital was in Tulsa, which was about an hour from our home, but we had no idea how long we would have to be in the hospital, if someone would have to stay with him all the time, what we would do with our other children while we were at the hospital, or how we would work out the logistics of work on top of it all – my husband worked out of state, only coming home on the weekends, and I had a full time job in Tulsa, but our daycare was in our hometown so I would have had to drive to work, drive back to pick up the kids, then drive back to Tulsa to be with our son in the evenings, provided I was able to work at all. St. Jude’s offered to pay all of our medical expenses not covered by insurance, they provided housing for us, they provided food and basic necessities, and even though it was far from home, logistically, it was easier for us all to be together out of state than to try to work around our various schedules and such in Tulsa. We told the doctor we wanted our information sent to St. Jude’s. Initially she refused, saying that there was no way they would accept us. St. Jude’s is a research hospital, and they only take children who are elligible for a study protocol in progress. She actually told us that “everything there is to be known about leukemia has already been found, so there’s no way they will be running a study that Pumpkin would be elligible for” and therefore, it was a waste of her time to even fax over the paperwork. We pressed, and eventually she relented, but only to prove us wrong. Imagine her surprise when Pumpkin was accepted. We told her thank you very much for your time, but we’re going there. She told us that delaying his treatment even by the 8 hours it would take us to make the drive amounted to criminal child abuse, and that if he died on the way, it was on our heads. She actually was on the phone with child protective services as we walked out of the hospital with our son. Knowing the outcome, I still don’t think I would have stayed in Tulsa.

Doctors are amazing people. Most become doctors because they want to help people. Some have amazing bed-side manners, and some do not. There will always be doctors you don’t like (trust me on this one), and there will be some really great ones too. But the one thing doctors are not is infallable. Despite what they sometimes think, they don’t know it all, and rarely are they looking at the perspective of the PARENT rather than the perspective of the healer. And this is where the internet comes into play.

Doctors will throw a lot of information at you at once, information you will probably be too numb to actually hear. You may take some notes, but you will think of a thousand questions you should have asked the minute you walk out the door. Some doctors are very accessible, but most are not. Not because they are ignoring you, but because they have many other children to care for besides yours. The time that they spend explaining things to you is time they are taking away from treating their patients. Having access to reputable websites (the Mayo Clinic, Johns Hopkins, etc.) to research your child’s particular disease, to be able to take the time to slowly process what exactly is happening with your child’s body, and what can be done to treat it, is invaluable.

The internet is also a great repository for personal stories. This is where the gray area comes in to play. Hearing from other parents who have gone through similar experiences is a huge blessing, and usually a huge relief. Just knowing someone else knows how you are feeling is an awesome thing, it gives you strength when you feel like you have none of your own. There are lots of support groups out there run by various outreach and support organizations. These are also a great resource. The number one thing you must remember above all else though, is NO ONE’S STORY IS EXACTLY LIKE YOURS.

There are horror stories galore of children who have died, or been horribly disfigured or otherwise harmed by the treatments that your child will have to undergo. There are stories of miracles, children who were not expected to live that suddenly went into a medically unexplainable remission, and have never been sick again. There are claims of miracle cures, whether they be experimental drugs or treatments, herbal rememdies, faith healings, and so on. But the simple fact is nothing is concrete. No one will ever be in EXACTLY the same situation as you, because every person is unique. Just like some people respond better to Tylenol than ibuprofen, some people respond better to some treatments than others. While the blogs, articles, and websites about other similar situations can give you hope, give you ideas for treatments for your child, they should never ever be used as the absolute last word for your child. EVER. EVER EVER. Information is a good thing. Being able to sit down with your child’s doctor and discuss alternative treatments is a great thing. But when you bring up an alternative treatment to your doctor, also be prepared to LISTEN. Ask your doctor why they are using the approach they are, and why the approach you have found would or would not be appropriate for your child. If your doctor is unfamiliar with the information you have found, provide them with the website, and any additional supporting documentation you have found for any approach you would like to use. Be able to rationally discuss any alternative approach, and be open to your doctor’s reasoning for not using it. Doctors are not perfect, but no matter how terrible their bedside manner may be, their primary concern is for the safety and well-being of your child.

The absolute best thing about the internet is the ability to find other people who understand what you are going through. As long as you always keep in mind that their story is not yours, having someone else who understands the feelings you have, who understands the medical terminolgy you are throwing out, is a beautiful thing. I have found several amazing bloggers, people I count among my friends, in this way. Our case is slightly unusal – we have several children with a wide range of medical issues. We are not able to concentrate specifically on one issue, so I have found a “buddy” for each of my children’s issues. While I can talk about my daughter’s heart condition with my fellow cancer mom, I get the best support for her issues from my fellow heart mom. I get tons of great information about the autism spectrum from a fantastic blog, information that my asthma support group doesn’t have because it’s not their specialty. Reach out to those who have similar situations, and you will be amazed at the amount of support they can give you.

The bottom line – the internet is a great tool, but it’s not the ultimate authority. Use it for research, use it for support, but don’t ever forget that what you find may or may not apply to you and your child.

Survival Tip #1: Medical Terminology

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There have been many times over the course of the last 6 years that I have really wished I had gone to med school. In high school, I had made plans to go to med school, up until my junior year when I decided 1, it was too much work, and 2, I didn’t really want to deal with all that… sick. I did have a brief career as a Certified Nurse Aide, working in nursing homes, a mental hospital, and an emergency room. My certification was good for 3 years, by the end of 1, I was done with it. Ha! Life has a funny way of throwing curve balls at you, doesn’t it. Surprisingly, being a CNA actually doesn’t give you all that much instruction in medical terminology, other than giving you fancy ways of saying pee, poop, and change that diaper. Oh, and something or other about blood pressure and range of motion. In other words, it’s a great introduction to being a mom, but other than that, not really all that informative. As a way to pass the time, I often read patient charts. I like puzzles, I like figuring out why things are the way they are, the cause and effect that leads up to this moment. Patient charts make for fascinating reading, especially at the mental hospital. In those charts there are a lot of words, phrases and abbreviations that did not make a lot of sense to me, so I started asking questions of anyone and everyone who would listen.

As a result, the first time I had to deal with a serious medical condition with on of my children, while my medical terminology skills were rusty, it didn’t take me long to catch back up to “nursing slang.” In my free time, I researched as much as possible, not just layman’s term definitions of my children’s conditions, but also medical journals, and anything I didn’t understand, I researched as well until I did. Yes it took a lot of time. Yes it was frustrating. Yes there was a lot of times I thought my head would explode from all the information I was cramming in to it. But when your children are sick, there’s not a lot you can do for them. You feel helpless, redundant, and completely out of your league when the doctors, nurses, and other experts come in and start throwing a bunch of information at you – information that most people have never even come close to understanding before. By doing the research I did, it gave me something to do instead of sit and feel helpless, it gave me information I didn’t have, information I could use to actually discuss my child’s condition with their provider, not just be told what they wanted to do with my child. And it also gave me a better understanding of the day to day workings of my child’s body. When my son was going through chemo, he had lab work done every day. Because I was the one with my son every day, all day, I was able to spot trends that the doctors who only saw him once a day and the nurses who saw him 4 or 5 times a day would miss – things like when a certain number was high, his mood would be just terrible – cranky, irritable, and unreasonable all day. It only happened on the days THAT number was high. Come to find out, that number is a chemical that effects moods. When you understand what all those numbers on the lab reports mean, you know what to look for in your child, and you are better able to articulate to your child’s providers what your child’s needs are.

The other benefit to having at least some knowledge of medical terminology was recently brought home to me when my dad was in the hospital. My step mother had been spending most of every day with him at the hospital, but when he took a sudden turn for the worse, the hospital started calling me to make decisions (I am his medical power of attorney). When I would call in the afternoons to check on him, I would start with “So, how’s he doing today?” and the nurses who had met my step mother but not me would just say, “Well, he’s not any better, but he’s not any worse, he’s pretty much holding in there. He’s got a little better color today, but you know that anything could happen at any time.” When I would then ask “What was his blood pressure readings and this time and this time, what was his creatinine levels, what was his temperature, how much insulin was he given, what’s the status on getting an NG tube placed” and so on, their attitude would instantly change. It’s not that they were unfriendly or unwilling to give information before, it’s just that when dealing with someone who has absolutely no knowledge of medical procedures and no ability to GAIN that information, it’s very difficult to give any other information than a very vague answer without a dramatic shift in patient condition. A working knowledge of medical terminology can give you insight into more subtle changes, and really, when it’s your child that’s sick, don’t you want to know everything you possibly can?  In my dad’s case, he had serious kidney problems and we knew he would not want to go on dialysis, but if his kidney function dropped below a certain point we wouldn’t have a choice. So we had to watch those numbers very carefully, and even the slightest change in either direction was a big deal for me because I knew how much weight that number carried.

The bottom line, when dealing with your child’s illness, you are preparing yourself for war. Arm yourself with every tool you can because knowledge is NEVER unnecessary or wasted.

Child-Sized Caskets

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I have been thinking about my son a lot lately. I have so few memories of him at this point, and I am trying desperately to hang on to every last detail. I know that memories fade with time, but realizing I can’t remember his sweet little voice, or his baby smell, or how soft his skin was, makes me unbelieveably sad. Planning his funeral was one of the hardest days of my life, and one of the memories that sticks the clearest in my mind was the funeral director telling us that he wasn’t sure what to offer us for a casket. They had a baby-sized one, and grown-up sized ones, but “they just don’t really make child sized caskets.” I think more than anything, that statement made me realize just how unfair his death was, how wrong it was. Pumpkin’s life story will be told in another post, but this one will be about his death, and the immediate aftermath.

Pumpkin died on a rainy morning in July. We were miles from home, and 8 hour drive away. When the doctors finally gave up on him, gave up on ever bringing my precious baby back to his smiling self, I felt… Nothing. Later, when I was able to think, I was angry – angry at the doctor who hadn’t listened to me that morning when I told him I was sick, angry at myself for not being his voice, his advocate, and pushing harder for him, and angry at God or whatever superior being you believe in for letting something like this happen to my boy. But at that moment, when the doctors and nurses filed out of his room, hands covered in blood, heads hanging, tears running, I felt nothing. I knew before they said anything he was gone. For some reason, I had to see him, to touch him one last time. I asked them if I could go in, and they tried to discourage me from it. I insisted, and they told me to wait until they could clean him up some. I waited for what seemed like an eternity, and finally I told them I was going to see my son, NOW, and if they didn’t like it, I didn’t care. I pushed past them, and sat by his side. A nurse stayed in the room with us, standing at his head, holding a towel. She kept wiping his mouth, nose, and ears – the blood was still oozing out of them, both from where his organs essentially dissentigrated, and from the massive transfusions they had given him in a vain attempt to raise his white blood cell count, to give him SOMETHING to fight the bacteria that raced through his body. I remember resenting her presence, thinking that this should be a time for us to be alone with our baby. I had wiped his bottom, his tears, and all his owies, surely I could handle this last task on my own without her help. My husband sat by his side, sobbing out his broken heart, clinging to Pumpkin’s hand like it was a lifeline in a stormtossed sea. I remember crying, for a little while at least, and then I remember just standing there, trying to absorb the fact that I was going home without my son. I don’t know if tears were still flowing at that point, but I think they were. I don’t know how long we stayed there by his side before I started to get restless. I couldn’t stand there any more, our son was gone, what was the point? I remember telling my husband it was time to go. I remember how he didn’t want to, and oddly, I remember being jealous of him, that he could cry and feel so deeply. I couldn’t feel anything any more. I wanted to, I tried, but there was just…nothing.

Pumpkin’s main doctor led us to a small room down the hall from the ICU. Someone handed me our baby, the nurses had been watching him while we waited and hoped and prayed and loved. The doctoei shut the door, told us to sit on the couch, and he sat in a chair next to us. Then he completely broke down, sobbing, railing at the unfairness, the injustice of this. I remember comforting him, telling him it was ok, it wasn’t his fault, he had done everything he could, and we were grateful for all he had done. I remember feeling the irony of the moment, thinking it should have been the other way around. He asked us a few questions, the standard death questions I suppose, although I don’t remember now what they were. He asked us if we wanted to donate his organs, and before I could say yes, he said nevermind, we couldn’t do that because there was nothing left to give. I don’t remember how long we stayed there in that room. I don’t remember leaving the hospital. I vaguely remember trying to find our car in the parking garage. I remember calling my mom, although I can’t remember exactly when I called her. I think it was while we were in the garage, but it might have been on our way home. We left the hospital and went to the Ronald McDonald House a few blocks away. Word had already spread. Either that or they could see it written on our faces, see that our baby was gone forever. There were people in the lobby when we walked in, but there was nothing but silence and sympathy as we walked by. I think there was relief too, relief that it was our child and not theirs. I saw it, and wanted to be angry about it but couldn’t. I understood, even while I resented it. The manager stopped us, told us not to worry about the standard check out procedure, that they would take care of everything for us. I nodded and kept moving – what I wanted more than anything was to move, to do something, anything to keep busy. I packed our room up like a maniac, throwing things in bags, not caring what went where just as long as it was done and we could move on. I know my husband helped, but honestly, I don’t remember him much at all. I was in a bubble, isolated from everything around me. I know he was there, and that he helped, and I think wanted to be out of there just as fast as I did, but I can’t remember him being there. The drive home was long, and mostly silent. Even our baby, 16 months old at the time, was quiet all the way, like he could sense something wrong. I don’t know, maybe he knew. For a long time afterwards, he had a terrible fear of doctors, crying and trying to run away every time he saw a stethoscope. He had never done that before, so I can only image he knew more than we gave him credit for.

Planning his funeral was a mixture of emotions, but all still somewhat detached. I remember putting a lot of thought into how the cards should look, and what he should wear. We had a small, private viewing, mostly family and close friends. We didn’t stay for all of it. The funeral director was an old friend of my husband’s family. He assured us someone would be with our son all night, and that the funeral home would be open to anyone who wanted to come by, all the way up until time for the funeral. I gave my daughter, 8 at the time, the choice of going or not. She wanted to see him one more time, maybe to reassure herself he was really gone, that we weren’t playing some mean trick on her. I don’t really know what she was thinking, who can really understand the mind of a child other than the child herself? She walked up to the casket with me, hand tucked in mine, creeping slowly, like she was afraid something or someone would pop out and yell “Boo!” at the last minute. When I looked in, looked at my son, I saw a stranger. It was like looking at a very life-like doll. He was so still, and silent. Some people say that the dead look like the living, only sleeping. That doll in the casket didn’t look like my son. Even in sleep he never had that stillness, and the face wasn’t quite right. It looked like a slightly older boy, like a brother or cousin maybe, but not like Pumpkin. My daughter started crying, yelling something about legs. It took me several minutes to process what she was saying. The casket lid split in half, like most caskets I suppose. The half over his head was open, but the half over his legs was closed. There was a satin drape that hung down from the edge of the closed side, hiding his legs from view. She was convinced they had cut his legs off, that there was nothing past the drape. Not knowing why it was there, why he was arranged that way, I wanted to reassure her that they were still there by simply opening the other half and showing, but I was suddenly overcome by the terrible fear that she was right. Or that if his legs weren’t gone, they were somehow horribly disfigured, naked maybe, or at the very least left untreated, reeking of death where his upper half only looked lifeless. Luckily, there was an attendant in the room who was happy to open the other half to show her, and me, that his legs were in fact there.

I remember dressing that morning for the funeral. Originally, I had planned something dark, traditional. But at the last moment, I couldn’t bear to wear black. I put on one of my favorite outfits, a bright turquoise sleeveless top with white capris that hard giant flowers in the same color as my shirt. I don’t know why, maybe I was trying to convince myself that this wasn’t a bad day, that this was a celebration of Pumpkin. It didn’t work, and I remember later thinking that what I wore was the stupidest thing to care about when my son was being lowered into the ground. When we showed up at the cemetary, it was overflowing with people. My office had given anyone who wanted it the afternoon off to attend his funeral, but they had to have proof they were there. There were a lot of faces there that I recognized in passing only, people who I had sat next to perhaps, or stood behind in line for the vending machines, but never talked to. I resented them, I resented everyone for being there, and at the same time was in a nearly manic state, wanted to be the perfect hostess, wandering through the crowd, shaking hands, saying thank you, smiling and pretending everything was ok. We sat for the service, the close family under a tent, the others stretched out behind and beside us. It was a bright, sunny day, oppressively hot. Everyone looked uncomfortable standing in the sunlight in dark heavy clothes, sweating like mad, wondering if attending something so horrible, so sad as a child’s funeral was really worth half a day off of work. My husband’s parents were there, his mom and dad bitterly divorced for a number of years. His dad and new wife sat with us in the family area, and his mother refused, standing at the back, not wanting to be anywhere near her ex husband. I wanted to slap her, shake, her, scream at her for being so petty and stupid. This day wasn’t about her, it was about our son, her grandson. The pastor was a friend of the family. I had met him a few times before, and he was always jovial, friendly, and un-preachy. In rural Oklahoma, finding a pastor who didn’t use every meeting as an opportunity to save someone is a rarity. I was shocked, angry, and rather disappointed when he talked briefly about our son, our family, and then moved into a lengthy sermon. I don’t really remember what he said, something about how we needed to take Pumpkin’s death as a sign from God that we needed to be saved, washed in the blood, before it was too late. That children were innocent, and therefore could walk freely into Heaven regardless of their religion, but that us adults were sinners and needed to repent before we had our turn at the Pearly Gates. It went on forever, until everyone there was shifting uncomfortably in their seats, and those standing started drifting away. I think he finally realized he had gone on long enough and wrapped it up. And then everyone left, and the bubble was back, distancing me from everyone and everything around me.

I spent much of the next couple of months in a daze. A few things stand out. I was able to stay off of work for a while, so I stayed home with my remaining children, going throught the motions, mechanically cooking for them, tucking them in at night, picking up after them. My husband had to go back to work, out of town, so I was alone most of the time. I remember one weekend he came home, and I had something to do, I don’t remember what. I told him the baby needed new shoes. I was gone for most of the day, and when I came home, he was still sitting on the couch, still playing the same stupid video game. I was so angry, angry that he hadn’t got the shoes, angry that he was able to escape with his grief, to deal with it by escaping reality via books or games, and I was stuck in it, every day, taking care of things, making sure the kids were fed and clothed and taken to school. After the first couple of night home, I wasn’t able to cry any more. I wanted to, I felt sad, I felt this horrible pressure inside, like a bubble growing, waiting to pop, and then just slowly deflating instead. After his funeral, he seemed to lock Pumpkin away in a box. My mom had the last pictures of Pumpkin enlarged and framed.. when she presented it to him, he slid it under the couch. I wanted to hang it up, and he refused. He said that he didn’t want other people to see it, to ask questions, and then have to relive everything as he told them Pumpkin’s story. While I could understand where he was coming from, I resented him deeply for it. Our son was someone to be proud of, someone who a lived a life that was much too short but still had LIVED. I could not understand why he would ever want to deny that part of himself. My mom set up a meeting for me with a local reporter. She was hoping that if our story was presented to the community, we might get donations, something to help pay the funeral bills. And I think she felt as I did, that Pumpkin needed to be remembered, honored, cherished. I talked to the man, gave him some pictures of the kids, told him about our experience at St. Jude’s. My husband was so angry with me when that article came out. He was absolutely furious. He had grown up in the small town where we lived, he knew most of the people there. By putting Pumpkin’s story in the paper, in everyone’s face, people he hadn’t talked to in years crawled out of the woodwork. Walking through the grocery store, he was always stopped by at least 3 people previously – now it was 10. People who he had hated, who he had fought as a teenager, people who he still held grudges and resentments against came up to him to offer their condolences, and he hated every minute of it. He felt that our pain should be private, not shared with anyone. And more than anything, he hated the article itself. When I told Pumpkin’s story, I answered the questions the reporter asked, from my perspective. I didn’t intend for it to sound as though I was there alone, but that’s how it came out. It wasn’t intentional, but having made the story public, my husband felt as though he should have as much credit or more for taking care of Pumpkin. I felt that he should have his share, and I was surprised by how one-sided the article appeared, but there wasn’t much I could do about it at that point.

Our marriage had never been particularly strong, and Pumpkin’s death was really the final blow. I wanted to go back home, to Alaska where I had grown up. I hated Oklahoma, hated the heat and humity and snakes and bugs, and I wanted to go home to the snow, the mountains, the clarity. I made the decision to go, and he decided to come with me after a short visit there. He found a job, and we moved together, bought a house, took care of our kids, had another. Our relationship was almost non-existant. We lived together like strangers, going through the motions but feeling nothing. A few years later, I had had enough and finally decided I was done living in the fog, done hiding in the shadows, and I left.

People deal with grief in many different ways. Some people surrond themselves with memories, building a shrine and almost worshipping their loved one. Some people hide away, lock up the pain and think that if they never see it, never think of it again, it will go away. Some people take the death of a loved one as an opportunity – a chance to educate others, to make them aware of their struggle, and draw attention to issues most people never want to think about. Some of us drift in between extremes, not really belonging to any group, dabbling in each. I think that’s me – I want to be reminded of my son, I want his picture on my wall. I want others to know about what killed him, that there is this horrible disease that thousands of kids are dealing with on a daily basis, that funding and research and CHANGE need to happen to make this thing go away. And most of all, I want people to know my son. I want him to have not lived his short life in vain, I want to know that his life had meaning, purpose, that somehow his life has touched the life of others, changed something or someone for the better. I have not been able to be the advocate for him that I have wanted to be. I’m not sure why – I make tons of excuses, I’m sick, I’m tired, I have too much to do. But lots of other people have the same issues in their day to day lives, but are still out there, lobbying for research, running marathons, giving speeches, being voices for their children both dead and living with horrible diseases. I don’t know if it’s an inherrant laziness on my part, or if it’s that I’m afraid to fail, afraid that no one will listen, that I will be forced to see that my son really didn’t mean anything to anyone but me. I think it’s both. This is my attempt to give my children the voice they deserve. It may not touch the masses, but if sharing their story, my story, helps just one other person to realize they aren’t alone, then I’ve done something to be proud of.

How do you define strength?

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This isn’t intended to be bragging, but over the last 5 years, I have been told by several people that I am the strongest person they know. It always makes me a little uncomfortable to hear. I don’t feel like a strong person. Most days, I feel tired, cranky, scared, lonely, and stressed. I constantly forget things, and more often than not can be found wandering the grocery store in my jammie pants with no idea what I’m looking for. In general I feel as though I am just barely keeping it all together, hanging on for dear life to a speeding train, looking more like an old Looney Tunes cartoon than a respectable mom of 5. When it comes to my children and their medical issues, I am terrified that I have missed something, or made a wrong choice somewhere along the line, and that I alone am responsible for keeping them alive and healthy – if I let go of the handrail for just a second, it all falls apart. I often rail against the unfairness of the world. My faith in God, or whatever higher being you recognize, is questionable at best.

I was complaining about this very subject to my mom recently. She said that the difference between a strong person and a weak one was that a strong person kept moving, in spite of the fear, the exhaustion, the anger, and the grief. I suppose by her definition, I am strong, but to me, I don’t see how anyone could do any less. When your child is diagnosed with a life threatening illness, you find a doctor, you get them treated, and you move on. When you bury your baby, you still have to get up the next morning, and the next, and the next – the world doesn’t stop turning, so how can you stop moving forward? I suppose you could turn to alcohol or drugs to dull the pain, to escape the reality of your life, but if you do, who takes care of everything else?

By my definition, strength is dealing with the things life throws your way, and then becoming an advocate, promoting awareness of your child’s condition, fundraising, lobbying for medical treatments, running in marathons, and still putting on your make-up, taking a shower, and facing the day with a smile. I can’t remember the last time I wore make-up, and I’m lucky if I leave the house in clothes that haven’t been peed on, pooped on, vomitted on, painted on, used as a child’s napkin, or covered in cat hair. But I keep going every day, and some days I actually manage to get it right.

What is your definition of strength? As the parent (or other family member) of a medically fragile child, what have you done that makes you proud of yourself?