My son has had so many difficulties with behavior in recent months. He has every single reason in the world to be angry and sad on top of all the regular difficult 4-year-old emotions, but his dad and I have unintentionally encouraged it; making excuses for his tantrums, by allowing him to be silent or even borderline-rude to doctors or nurses, and by allowing bad behavior to go without consequence. There is always a little voice in my head that I hate even more than the hopeful voice, and she says, "He might not get to live a long life... why not let him do what he wants?" It's harder to shut her up than the stupid voice of hope. But I cannot live my life as a parent on the assumption that the worse case scenario will be OUR scenario. I need to live as if he will grow to be a crotchety 99 year old man one day; hopefully one who is able to hear that he will not be getting two string cheeses for snack without stomping to his room and screaming, "No one likes me!"
So we are cracking down. It is hard and awful and miserable, and we suck at it. The other day we had planned for me to take him and his older sister to see a movie. The behavioral book says that if a negative behavior happens, to give a consequence without more explanation than, "No, you're not going to do ___ because I don't like the tantrum you threw earlier today." He was having a hard morning, and I had given him far more grace than I probably should have without any consequence beyond TV and video games taken away for the day, plus time in his room when he was freaking out. But shortly before it was time to get ready to go, he threw a granddaddy of fits; slamming the door so hard the doorknob fell off (our house is 78 years old, this is not unusual). My husband and I hunkered down for a meeting and decided that we should do the hard thing and not let him come to the movie. Both of us were heartbroken to think of having to follow through, especially while overhearing the kids talking about how excited they were to go after lunch. So we cheated.
We had another pow-wow before ever telling our son of any consequence and decided to let him choose whether he wanted to come to the movie but not get popcorn and pop when his sister did, or not come to the movie at all. Jealousy over drinks especially is a major problem for him, but even so, I did not expect him to choose not to come to the movie, which he did. Apparently (and I'm glad I missed this), when his sister and I had just walked out the door he started screaming, "No, Mommy, I changed my mind! I want to come! I want to come! Mommy, stop!" Ugh, I'm tearing up just imagining the pathetic scene. My husband, so rarely the bad guy, told him that his choice had been made and he had to take his nap.
Unfortunately for our tough-love lesson, the movie theatre lost power after only 6 minutes and my daughter and I didn't even get to see the movie. We finished our discounted pop and popcorn in the dark. My daughter, starved for attention as she is, was understandably very upset about it. To try and make it up to her, I found another kids' movie playing at a discount theatre and, on a whim, took both her and her brother to it, completely disregarding his previous choice to skip the movie.
So after a special event like going to a movie even though he had behaved poorly that day, he was grateful and delighted, right? No, he fussed throughout a large part of the movie because his sister had eaten popcorn 3 hours earlier. Then he yelled at me when we got home because it was time for dinner and he hadn't had a chance to do anything "special". What is wrong with 4 year old brains? I felt like I lost every battle at every corner that day.
Although the next day when I commented that he had been doing better with his temper, he said, "Next time, do you think I can get popcorn?" So maybe a little teeny bit of something sank in. A little.
Thursday, June 23, 2011
Shut up, hope.
My son has been "well" for the most part for at least two weeks. It's a strange feeling. I feel a nagging sense of hope down deep but I will not encourage it, or even acknowledge it very much. Any time when we've gone a month without hospitalization I start to feel this, and I hate it. I know that my son feels it as well. Tonight at bedtime he said, "I'm never going to get better, EVER," and the next minute he prayed, "Thank you for me getting better."
He knows the basics of what we know; that he has one pressing "kind of sick" that is causing him to be on so many medications and is also the primary cause of his dietary and fluid restrictions. He knows that is the sickness we're trying the hardest to make better. But he also knows that he has another kind of sickness that will be with him his whole life. I've tried to encourage the optimistic possibilities and tell him that maybe that "kind of sick" will be no big deal, that maybe he will just have to take a couple of kinds of medicine and that will be all. But I also try to be honest and tell him that no one knows right now what its effect will be. That uncertainty is miserable for me, and is stressful for him as well. But I am not the kind of parent who can lie to my child and tell him that everything will be fine, when it very well might not.
He was put on a new medication in a gelcap last week that was nearly impossible to mix into pudding like his crushed pills, and the liquid version was ten times more expensive than gelcaps. So I read up on teaching kids how to swallow pills, and we went for it.
My little guy is such a surprise sometimes. With something like jumping into a pool or lake or trying out a slide at a new park, he hems and haws and talks himself out of it. But he took to swallowing pills like a fish to water. He's now swallowing his pills two at a time, and is talking about trying to move up to three or four at a time soon. I'm so proud of him. At the same time, his new ability means he's drinking more fluids at meds time than he was previously, so I have to be a little more stringent with drinks throughout the day, but that is a small price to pay to be able to hand him one more thing he can control in regards to his diseases.
Now, what to do with the enormous quantity of pudding stashed in the pantry?
He knows the basics of what we know; that he has one pressing "kind of sick" that is causing him to be on so many medications and is also the primary cause of his dietary and fluid restrictions. He knows that is the sickness we're trying the hardest to make better. But he also knows that he has another kind of sickness that will be with him his whole life. I've tried to encourage the optimistic possibilities and tell him that maybe that "kind of sick" will be no big deal, that maybe he will just have to take a couple of kinds of medicine and that will be all. But I also try to be honest and tell him that no one knows right now what its effect will be. That uncertainty is miserable for me, and is stressful for him as well. But I am not the kind of parent who can lie to my child and tell him that everything will be fine, when it very well might not.
He was put on a new medication in a gelcap last week that was nearly impossible to mix into pudding like his crushed pills, and the liquid version was ten times more expensive than gelcaps. So I read up on teaching kids how to swallow pills, and we went for it.
My little guy is such a surprise sometimes. With something like jumping into a pool or lake or trying out a slide at a new park, he hems and haws and talks himself out of it. But he took to swallowing pills like a fish to water. He's now swallowing his pills two at a time, and is talking about trying to move up to three or four at a time soon. I'm so proud of him. At the same time, his new ability means he's drinking more fluids at meds time than he was previously, so I have to be a little more stringent with drinks throughout the day, but that is a small price to pay to be able to hand him one more thing he can control in regards to his diseases.
Now, what to do with the enormous quantity of pudding stashed in the pantry?
Wednesday, June 8, 2011
8 Things They Never Tell You
Things I never knew about life with a sick kid until it hit me in the face:
1. How easily you can handle medical things
Remember the days when your first baby was little, and tears came to your eyes when she cried during her shots? Yeah, that leaves pretty quickly when you have a child getting blood drawn several times a day. And doling out over a dozen medication doses in a day is a piece of cake, even when my son throws a fit and screams and runs away because the liquid steroids taste awful.
2. How poorly you handle everything else
I don't know if it's just me personally, but keeping all of my children fed, clothed, and medicated is the very maximum that I can accomplish many days. I see a sink full of dirty dishes and the idea of washing them is so terrible I'd almost prefer bamboo shoots under my fingernails. Not to mention the emotional wreck I am most of the time; so much so that hearing that a movie I'd wanted to see would not be in the theatre on the one day my husband and I could get away for a date brought me to tears. And the movie ended up staying for that day anyway.
3. How hard it is on siblings
My baby may never know life without a sick brother, but my oldest daughter has had a very difficult year. She had behavior troubles in school, which is very unlike her, wakes up with nightmares that are often about losing her brother, and has outbursts toward both of her parents on a regular basis. Some of her stress comes from not receiving as much attention as she deserves, but I think more of it comes from the constant worry about her brother. The two of them share a room, so she has been there for all of the down and dirty moments from vomiting to screaming pain. She doesn't understand it all, but she understands enough to worry her poor little heart out.
4. Irrational worry
I have never been a worrier, and I praise God for that, because a natural worrier (like my mother-in-law, for instance) would have a much harder time emotionally with chronic disease in the house. But there are moments when I open the door to my son's room and feel nearly certain that I will find that he has died. Logically, there is no reason for me to fear that at this point in time, but that doesn't stop it from coming.
5. How differently people treat you
When I see anyone who is a friend on Facebook or is aware of my son's condition, he is almost always the first topic of conversation, frequently even before the word "hello". I expected that. But it seems that people also expect that I have lost my sense of humor and shouldn't be joked around with during this "difficult time". Or, even worse, that I am so constantly busy with my own family that they shouldn't bother to call on the phone or ask me out for a cup of coffee. I certainly didn't have a bustling social life before my son became sick, but it has all but died in the last year.
6. How little people can actually help
We don't have any family in town, but we have many loving people who support us in prayer and frequently offer to help. But the thing is, there's not really much anyone can do to help. Little household chores would be helpful, like folding laundry or mowing the lawn, but those aren't the kinds of help I feel that I can ask for from someone who isn't close family. And as much as my husband and I would benefit from some time on our own, with a nursing baby and a son who needs many medications throughout the day, it really isn't practical to ask someone to babysit for us either.
7. How little faith helps
As many times as I've heard God referred to as "The Great Physician" recently, it has never brought me solace. I know without a doubt that God could heal my son this very minute. But He hasn't. And as much as I'd love to have faith that He will heal my son, I don't. Because he might not. Children die every day, many of them Christians. God loves his children, but He allows them to suffer. Yes, there is probably a greater purpose behind all of it that I don't see and maybe never will, but that doesn't stop it from sucking.
8. How much faith helps
Remember how I mentioned that I'm not a worrier, but that I suffer from crippling worry every now and then? If I did not know that my son is in God's hands, those crippling moments might last for days, rather than minutes or hours. I confess that I have not had a spiritual breakthrough, with hours spent praying or in scripture, or even a significant improvement in my too-lax devotional life. But I am in constant prayer throughout my day. Not locked in a closet or on my knees, but as I wipe the face of my filthy baby, or as I hear the whimpers of my son, or as I see the heartbreak on the face of my daughter. I know He hears me, and I know He is with me. And any "strength" that people say they see in me is His, not mine. And He gives only as much as I need: enough to give medication, but not quite enough to wash the dishes.
1. How easily you can handle medical things
Remember the days when your first baby was little, and tears came to your eyes when she cried during her shots? Yeah, that leaves pretty quickly when you have a child getting blood drawn several times a day. And doling out over a dozen medication doses in a day is a piece of cake, even when my son throws a fit and screams and runs away because the liquid steroids taste awful.
2. How poorly you handle everything else
I don't know if it's just me personally, but keeping all of my children fed, clothed, and medicated is the very maximum that I can accomplish many days. I see a sink full of dirty dishes and the idea of washing them is so terrible I'd almost prefer bamboo shoots under my fingernails. Not to mention the emotional wreck I am most of the time; so much so that hearing that a movie I'd wanted to see would not be in the theatre on the one day my husband and I could get away for a date brought me to tears. And the movie ended up staying for that day anyway.
3. How hard it is on siblings
My baby may never know life without a sick brother, but my oldest daughter has had a very difficult year. She had behavior troubles in school, which is very unlike her, wakes up with nightmares that are often about losing her brother, and has outbursts toward both of her parents on a regular basis. Some of her stress comes from not receiving as much attention as she deserves, but I think more of it comes from the constant worry about her brother. The two of them share a room, so she has been there for all of the down and dirty moments from vomiting to screaming pain. She doesn't understand it all, but she understands enough to worry her poor little heart out.
4. Irrational worry
I have never been a worrier, and I praise God for that, because a natural worrier (like my mother-in-law, for instance) would have a much harder time emotionally with chronic disease in the house. But there are moments when I open the door to my son's room and feel nearly certain that I will find that he has died. Logically, there is no reason for me to fear that at this point in time, but that doesn't stop it from coming.
5. How differently people treat you
When I see anyone who is a friend on Facebook or is aware of my son's condition, he is almost always the first topic of conversation, frequently even before the word "hello". I expected that. But it seems that people also expect that I have lost my sense of humor and shouldn't be joked around with during this "difficult time". Or, even worse, that I am so constantly busy with my own family that they shouldn't bother to call on the phone or ask me out for a cup of coffee. I certainly didn't have a bustling social life before my son became sick, but it has all but died in the last year.
6. How little people can actually help
We don't have any family in town, but we have many loving people who support us in prayer and frequently offer to help. But the thing is, there's not really much anyone can do to help. Little household chores would be helpful, like folding laundry or mowing the lawn, but those aren't the kinds of help I feel that I can ask for from someone who isn't close family. And as much as my husband and I would benefit from some time on our own, with a nursing baby and a son who needs many medications throughout the day, it really isn't practical to ask someone to babysit for us either.
7. How little faith helps
As many times as I've heard God referred to as "The Great Physician" recently, it has never brought me solace. I know without a doubt that God could heal my son this very minute. But He hasn't. And as much as I'd love to have faith that He will heal my son, I don't. Because he might not. Children die every day, many of them Christians. God loves his children, but He allows them to suffer. Yes, there is probably a greater purpose behind all of it that I don't see and maybe never will, but that doesn't stop it from sucking.
8. How much faith helps
Remember how I mentioned that I'm not a worrier, but that I suffer from crippling worry every now and then? If I did not know that my son is in God's hands, those crippling moments might last for days, rather than minutes or hours. I confess that I have not had a spiritual breakthrough, with hours spent praying or in scripture, or even a significant improvement in my too-lax devotional life. But I am in constant prayer throughout my day. Not locked in a closet or on my knees, but as I wipe the face of my filthy baby, or as I hear the whimpers of my son, or as I see the heartbreak on the face of my daughter. I know He hears me, and I know He is with me. And any "strength" that people say they see in me is His, not mine. And He gives only as much as I need: enough to give medication, but not quite enough to wash the dishes.
Sunday, June 5, 2011
Banishing Negativity
Our son's prognosis is unknown, but could be very bad. We have no idea what to expect for him in the long run, and will not know that for six more months at the soonest. My mind is in survival mode, not allowing me to think about the possibilities very often, but every now and then the worst pops into my mind. They're triggered by idle thoughts, like wondering what my 9 month old girl's first memories will be, which makes the unbidden thought, "Will she know her brother as she grows up?" comes to mind, sometimes bringing on a near panic attack. It is torturous to not have any idea what kind of outcome to expect for him, or how much of his life he will spend on dialysis due to kidney failure, and it is so hard to hold back those negative thoughts. They keep coming back, over and over, in different ways, and trying to throw them right out before they make me lose it is the best that I can do.
The thought that scares me the most is the possibility of having to explain to our son that he might never be well, or even worse, might never really grow up. That is a possibility that hasn't crossed the lips of any medical professional yet, but words like, "potential kidney failure" and "only one transplant" bring them to mind nevertheless.
Yesterday he was talking to my husband about some of his temper tantrums. My husband asked the hypothetical question, "What about when you're in kindergarten and throw a fit like this for your teacher?" to which our son replied, "Well, I won't be sick then." It was a heartbreaking thing to hear when it has such a slim chance of being true.
The thought that scares me the most is the possibility of having to explain to our son that he might never be well, or even worse, might never really grow up. That is a possibility that hasn't crossed the lips of any medical professional yet, but words like, "potential kidney failure" and "only one transplant" bring them to mind nevertheless.
Yesterday he was talking to my husband about some of his temper tantrums. My husband asked the hypothetical question, "What about when you're in kindergarten and throw a fit like this for your teacher?" to which our son replied, "Well, I won't be sick then." It was a heartbreaking thing to hear when it has such a slim chance of being true.
Sunday, May 29, 2011
Mini Triumph
My son's pain returned again this afternoon, as we knew it would. The added challenge this time was that our family was 50 minutes away from our home hospital. His pain increases very quickly, and in the past instances the only solution to his pain has been a morphine drip, which we clearly did not have access to.
When I saw his pain begin the way we'd seen it in the past, I gave him a generous dose of high sodium food. It is a simple and painless trick that had a chance of helping him, if not with the pain, with the recovery after the pain had ceased, and could potentially reduce his risk of being hospitalized again. He was able to eat some before the pain kicked unto high gear, but not as much as I would have liked. We prepared to book it home to the ER, leaving our oldest daughter in the care of her grandparents for the night. But by the time my husband carried our son to his car seat, his pain seemed to be improving, and within ten minutes of the drive it had disappeared entirely. It was such an amazing relief to be able to just bring him home rather than having to make another ER trip followed by yet another hospitalization.
It was also a little validating, as parents and medical caretakers, to feel like our suspicions of low sodium causing this pain might be at least a little correct.
When I saw his pain begin the way we'd seen it in the past, I gave him a generous dose of high sodium food. It is a simple and painless trick that had a chance of helping him, if not with the pain, with the recovery after the pain had ceased, and could potentially reduce his risk of being hospitalized again. He was able to eat some before the pain kicked unto high gear, but not as much as I would have liked. We prepared to book it home to the ER, leaving our oldest daughter in the care of her grandparents for the night. But by the time my husband carried our son to his car seat, his pain seemed to be improving, and within ten minutes of the drive it had disappeared entirely. It was such an amazing relief to be able to just bring him home rather than having to make another ER trip followed by yet another hospitalization.
It was also a little validating, as parents and medical caretakers, to feel like our suspicions of low sodium causing this pain might be at least a little correct.
Thursday, May 26, 2011
Lesson from a small one
Last week-end my 4 year old son was hospitalized for the 10th time in his life, and the 8th time in the last 9 months. He was in the worst pain I can imagine seeing anyone in. Think of a movie where a character is in agonizing emotional or physical pain: Sophie's Choice, Band of Brothers, Saving Private Ryan, etc. (Apparently agonizing pain is synonymous with WWII in my mind.) This tiny 4 year old kid who has already been through more than any child should ever have to go through, was writhing in pain, screaming when he could but usually not even able to do that, and no one knew why.
As the mother who had carried him from the parking ramp into the emergency room in the only position that didn't make him scream, I had to hold it together for him. I couldn't let myself fall apart. He has given me very specific instructions in the past about not crying in the hospital, or at least not in front of him, so I couldn't go against his request at a time when he needed strength. So I did the only things I could think to do. Pray for him, advocate for him whenever a nurse or doctor did something I knew he wouldn't like or that they couldn't see was causing him further pain, and stroke his hair and talk to him. I didn't even realize what I was saying, just that the maternal instinct kept the words coming in low, soothing tones, at least until he shouted at me in a voice filled with agony, "NO!" Which, in the state he has been in recently, could have been referring to literally anything, from a snack he saw someone eating in the hallway that he wasn't allowed to have, or a compliment someone gave him that he didn't like. But he thankfully followed it with, "Mom, it's NOT okay," at which time I realized that what I had been saying, over and over, was "It's okay, honey, it's okay." He was so correct that my heart hurt and my eyes filled with tears. "You're right, sweetie. It's not okay. It's very not okay. Nothing is okay right now."
In the hours to follow, during which the pain continued but mercifully decreased, I found the forbidden words returning to my tongue repeatedly. I tried to bite them back when I noticed, but they still slipped out occasionally. If I didn't remember to contradict them as they came, my boy reminded me that it isn't okay and I shouldn't say that it is.
Such a small thing to realize, but it has been a revelation to me. Sometimes things are not okay. And it's nothing short of a bald-faced lie to say that they are. I teach my children that lying is unacceptable, and yet it took a 4 year old boy in the throes of misery to call me out on the lies I've been telling him for months. Things are not okay.
It's okay for me to tell God about how not-okay life is right now too. He loves my son too. Why He isn't healing him is literally beyond me, but it pains Him to see my boy writhing in pain even more than it pains me. This situation is not okay with God either. Why He is allowing it is something I do not understand and may never understand, but in the meantime, it's okay for me to admit how awful it is. Staying strong is overrated.
As the mother who had carried him from the parking ramp into the emergency room in the only position that didn't make him scream, I had to hold it together for him. I couldn't let myself fall apart. He has given me very specific instructions in the past about not crying in the hospital, or at least not in front of him, so I couldn't go against his request at a time when he needed strength. So I did the only things I could think to do. Pray for him, advocate for him whenever a nurse or doctor did something I knew he wouldn't like or that they couldn't see was causing him further pain, and stroke his hair and talk to him. I didn't even realize what I was saying, just that the maternal instinct kept the words coming in low, soothing tones, at least until he shouted at me in a voice filled with agony, "NO!" Which, in the state he has been in recently, could have been referring to literally anything, from a snack he saw someone eating in the hallway that he wasn't allowed to have, or a compliment someone gave him that he didn't like. But he thankfully followed it with, "Mom, it's NOT okay," at which time I realized that what I had been saying, over and over, was "It's okay, honey, it's okay." He was so correct that my heart hurt and my eyes filled with tears. "You're right, sweetie. It's not okay. It's very not okay. Nothing is okay right now."
In the hours to follow, during which the pain continued but mercifully decreased, I found the forbidden words returning to my tongue repeatedly. I tried to bite them back when I noticed, but they still slipped out occasionally. If I didn't remember to contradict them as they came, my boy reminded me that it isn't okay and I shouldn't say that it is.
Such a small thing to realize, but it has been a revelation to me. Sometimes things are not okay. And it's nothing short of a bald-faced lie to say that they are. I teach my children that lying is unacceptable, and yet it took a 4 year old boy in the throes of misery to call me out on the lies I've been telling him for months. Things are not okay.
It's okay for me to tell God about how not-okay life is right now too. He loves my son too. Why He isn't healing him is literally beyond me, but it pains Him to see my boy writhing in pain even more than it pains me. This situation is not okay with God either. Why He is allowing it is something I do not understand and may never understand, but in the meantime, it's okay for me to admit how awful it is. Staying strong is overrated.
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