Survivor's Guilt?

Harriet continues to improve at an astonishing rate! She still has pain, but here are some of the things that have happened in the past two weeks:

1. She's driving again. (Exciting progress in terms of her pain, but it is also like being driven around town by someone who is trying to kill me.)

2. She has applied for a couple of summer jobs.

3. She is doing (some) schoolwork, on her own, no prodding from me.

4. She is helping out with Gunny the Magnificent Chewing Puppy and has decided she wants to train him to be a therapy dog so she can help other people.

All of this is fantastic, miraculous, joyful, hopeful as we watch her heal and look forward to a pain-free day for her sometime in the future. It really seems possible now!

And then... THEN... I feel guilty. I feel awful when I tell another Pain Parent about Harriet's progress. Because I remember that I was happy for other Pain Parents when their kids got well, but my heart tore open as I wondered, "Why not MY kid?" So here I am on the other, happier side of that equation and it is tearing me up. Is this some kind of survivor's guilt? Am I being silly or hypersensitive? I just can't decide.

What do you think? Is it encouraging to hear that someone else is healing when your child is still hurting? Or does it make you feel worse?

A little better, and some puppy love

Well, Harriet was a little better this weekend. Which was great since on Friday she had CT scans of her head and her abdomen to try to track down a phantom infection. Sinuses? Appendix? No one knows! And her vein infiltrated (OUCH) which meant a second IV for a needlephobic kid, so... Fun. The kid earned a BREAK, for crying out loud.

To put this into perspective: Last fall, we had to put down Sarge, our 11-year-old German shepherd. He was quite simply the Best Dog Ever.

We got Sarge when Harriet was four years old, and he was devoted to her. She was devastated and his passing left a big, gaping hole in her already painful life.

After all of the medical goings-on last week, I decided that we needed some happy in this house. Even if, at this point in my life, I do NOT need to take care of anything else that poops.

So we went out on Sunday and picked up this little guy:

We named him "Gunny" (military family, HELLO). He won't be little for long. He is only 12 weeks old in this pic, and he'll weigh a minimum of 85 pounds when he is all growed up.

Nothing is as happy as a puppy. Except when he wakes you up at 3am... But it is worth it because Harriet is thrilled, and excited, and focused on something other than her pain.

Puppy love!

Anger Management

Sometimes, my Pain Parent life makes me angry. Even now, when maybe -- just maybe -- we have possibly found a solution that will help take away Harriet's pain.

Some of these things are easy to discuss with my friends, Hubs, and other Pain Parents. And I know that some of these things are just me looking for a target for my impotent, helpless feelings.

But some of these really ugly, vile, rage-filled moments are my secret. Once in a while, these things pull me down and make me turn some of my anger toward myself -- as in, "How could I even think that?!? I must be a Bad Person!" So I'm dragging them into the light and naming them. Maybe that gives them less power. Or maybe it shows another Pain Parent out there that these feelings are normal.

1. Doctor anger. Before Harriet's pain began on July 17, 2010, I always tried to work with doctors. They're only human, and we're in this together. But the past 20 months have really chipped away at my respect for many, many doctors. Particularly the doctors at a children's hospital. Some of these quacks should never be allowed to treat pediatric patients, not EVER. But I digress. (See what I mean? ANGER.) To be specific, I am enraged when doctors promise to call back but don't, promise to call in pain prescriptions but don't, and say things to your child like, "Well, there's no cure; no one can do anything else to help you." When a child is in severe pain, there should at least be a sense of urgency and common decency. And maybe some darn manners. Or maybe that's just me. (And I have to remind myself that we have also found a couple of fantastic doctors who give us their home and cell numbers and are clearly trying their hardest to help this poor child. I love those doctors and I recommend them to anyone who asks. And I bake cookies for them!)

2. Friend anger. I love my friends. I do. You guys are the BEST. But sometimes, when I walk into a room and some frantic whispering comes to a sudden and suspicious stop, it bugs me. And it upsets me when a friend says, "Oh, I would have invited you to do such-and-such with us, but I know how much you have going on right now." Please let me make my own decisions about what I can and cannot do. Last time I checked, I'm an adult. And if you didn't want to invite me, just don't freakin' invite me! Please don't use my child's pain as an excuse. That hurts me. And it makes you a jerk.

3. Hubs anger. Don't get me wrong - Hubs is awesome. But... But. He goes to work and comes home and gets a report from me on what's happening, and then questions what I'm doing. I know he wants (and needs!) to participate in this awful situation. But when I'm at home drying my kid's tears and holding back her hair while she pukes for three straight hours, the last thing I need is someone waltzing in at 7pm to tell her she just needs to drink more water. And oh, how this man sleeps! While I lie in bed begging God to help my child, he's sound asleep. I'm jealous of his sleep and it gives me a convenient target for my rage: "How can he SLEEP right now? Does he even KNOW how bad this is?"

4. God anger. I am a Christian. My favorite Bible verse has always been Romans 8:28, the one about God using all things for good in the lives of His people. I can talk a good talk about trials and persistence and all that good stuff, and until all of this, I thought I was living that belief. But, sitting by my child's hospital bed in the dark hours of the night, after yet another medicine has failed, I have gotten so angry with God. How could this keep happening to a kid? How is this OK, or helpful, or anything good in any way? Haven't we learned enough, grown enough, prayed enough yet? It frightens me to even put into words the times that I have questioned God. And then I get upset with myself, and afraid of some kind of lightning-bolt-striking-my-kid consequences. That's not what my faith is like. That's not who I am. Is it? And that brings us to...

5. Self anger. I'm an only child, a strong Southern woman, a military wife, a mom. I am accustomed to taking the situation in hand and fixing things for my family. I get things done. And suddenly, here is a horrific situation I cannot fix. My child is in constant, 24/7 pain, and I can't make it stop. I can't even find the right doctor/treatment/medication to make it a little better. My child says, "Mom, it hurts SO BAD," and I have nothing left to try, nothing I can do for her. That makes me hate myself. Why can't I figure this out? And when I question my faith, or rage at God, I really despise and fear myself. I never thought this is who I would be, this helpless person holding a sobbing child.

I think all of these angers are normal. When I'm not trapped in the throes of an internal rage, I know that it is probably OK to have these feelings. I think we Pain Parents have to give ourselves permission to be angry, to get it out of our system, to acknowledge this feeling and then move on.

What do you think?

Finally, a pain scale that tells the whole story!

I have come to hate the pain scale. Every nurse and doctor wants to know, "On a scale of one to 10, with zero being no pain and 10 being the worst pain of your life... How is your pain?"

Harriet gets this question constantly. Even more often than she gets the advice to drink more water. Gah!

We were thrilled to see this new and much improved pain scale from Hyperbole and a Half:

I think that says it all!

"My Secret"

Not a lot of children's books out there address what it is like to be in chronic pain. But here's one!

My Secret, by Gretchen Rautman

Here's the book description from the link:

"This is the story of a child's struggle with a secret; that she is in pain. The child does not know how to share her secret, and is scared of what people will think of it. Through the story, the child learns how to share her secret and cope with the pain. This book is based on my experiences with chronic migraine as a young child. It includes talking points at the end of the book for adults to help get an idea of what their child who is suffering is going through. This book can bring an understanding between adults and children who are suffering. It can be very scary to a child to be forced to deal with chronic pain, and my wish is that this book can help comfort and inform. All proceeds go to the Migraine Research Foundation."

Because the author herself has childhood experience with pain, I have high hopes that she'll provide a useful perspective. If you and your child have read this book and found it to be helpful, please let us know!

(My chronic pain kiddo may be a little old for this, being 16 and therefore knowing EVERYTHING [insert eyeroll], but I might get it for her anyway.)

The Healthy One

I'm a Pain Parent, trying to deal with my oldest child's struggles with chronic pain.

But I'm also the mom of The Healthy One: my youngest daughter. We'll call her Angel. Angel is the most generous person I have ever known. She is not one to complain and is also fiercely independent. At the age of 12, she handles schoolwork completely on her own and gets straight As, thank you very much. She has discovered, and has been discovered by, boys -- but thinks they all pale in comparison to her dad.

Oh, how I love this baby girl of mine!

Angel loves her big sister fiercely and wants her to be well. But of course big sis' illness affects Angel's life in so many ways. And I worry.

I worry that she'll be jealous of the time I spend caring for her sister.

I worry that she'll think I don't love her as much.

I worry that this will permanently scar the relationship of these two awesome girls, who I had always imagined would grow up to be best friends as well as sisters.

I worry that there won't be enough therapy in the world to make up for the times Angel has had plans changed, or even cancelled, because her sister was sick or in the hospital. Does this make her feel less important, less loved, just... Less? God, I hope not.

Sometimes, parenting a healthy child right alongside a chronically ill child feels like it tears me in two. The Sick One can't handle a trip to the movies, but I promised The Healthy One I would take them to see it this weekend... And so on, and so on.

There is no "win" here. There is just putting one foot in front of the other and trying so, so hard to reassure both of my darling girls that I love them to pieces. And still...

I worry.

Migraine Surgery, part 2: Back to parenting

Well, I just went back and read the "Migraine Surgery, Part 1" post. It was a good reminder of how far we've come. Right now, Harriet is tired -- the nerve pain on her scalp keeps her from sleeping -- and sick from pain meds making her nauseous. Throwing up when you have four incisions on your head and a healing nose = NOT FUN. It has been discouraging.

But we have to remember that her pain is better than it was, and one day soon we will see the fruit of all of this!

I've learned that it is really, really helpful to communicate with other patients and other Pain Parents who have gone through similar surgeries. Sometimes, they can tell you what to expect better than any nurse or surgeon! I have found the online community at MD Junction (www.mdjunction.com) to be really supportive and informative. They have forums for many, many, MANY health issues and are a good place to go if you need info or just need to understand that you and your family are not alone.

Now that we are a bit more than one month post-op, I'm back to the usual conundrum:

How do you parent a child in constant pain?

I can tell you what NOT to do, because... well... I've done it. And it sucks. And that is, don't hold in the small corrections and disciplines you know your child needs. These will build up inside until you find yourself blowing your stack at a kid who yes, did something wrong, but does NOT need a parent who is losing it. (cue the Pain Parent self-loathing)

Of course it works better to calmly address things as they come up, but that is easier said than done. What seems to make the difference for us: conversations that offer Harriet solutions for what to do when her pain is particularly bad and she finds herself wanting to lash out at the people who love her. Waiting until the trouble starts is really too late to address this. We have to lay out in advance what is expected, and what she can do when she feels like she can't meet those expectations.

Harriet is 16 and taller than I, so it is easy to forget that she is still, in fact, a child. A child who is coping with health issues that would flatten many adults. She needs guidance and she needs coping skills. Most of all, she needs to know that we love her NO MATTER WHAT. And that this love means we want her to grow into a strong, capable adult who knows how to behave in civilized company.

Last night, Harriet said, "Mom, I just want you to know that I appreciate how you are going through this with me, and helping me. Thank you."

Wow.

Helping our children is a privilege. Sometimes, many times, it feels like a burden. But who better to help our children than us?

Hang in there, Pain Parents.

Migraine surgery, part 1

January 17th was The Day: migraine surgery for Harriet. Here is the list of all the procedures they did to my baby (well, she's 16 but will always be my baby!):

1. Bilateral endoscopic release of the zygomaticotemporal branch of the trigeminal nerve
2. Septoplasty
3. Turbinectomy
4. Bilateral decompression of the greater occipital nerve, partial resection of the semispinalis capitis muscle and bilateral subcutaneous flap to shield the nerve
5. Third occipital neurectomy

The surgery took almost four hours. When surgery was over, but before we got to see Harriet, the surgeon came out to talk with us. Everything went just as planned, and he also found a blood vessel on her right greater occipital nerve - one big source of her pain - so he removed the blood vessel as well.

Harriet went into surgery with her usual pain level of 9 on a scale of 1-10. She woke up from surgery with her pain level at a 5. When she said that, I gasped and started to cry, and then the nurses (who were FANTASTIC and took great care of all of us) started to cry too. Of course, as the nerves woke up over the next few days and we dealt with all kinds of post-op yuckiness like drainage tubes (ew!) and nasal tubes (ow!), her pain got worse... But the primary pain is related to her surgery and not her migraine.

That's right! She still has migraine pain but it is definitely BETTER. Better after a year and a half of constant, debilitating pain. Better after an army of neurologists told us there is no cure, she needs to deal with the pain because it will never end, she's just stressed, she wants attention, or (my personal favorite) there's nothing left to help her but psychiatry.

It is so exciting to even contemplate that Harriet might get back to a normal life.

The surgeon tells us it will take 3 to 6 months to know for certain just how much relief she gets, but the initial results are VERY encouraging. Her biggest complaint now is that her scalp hurts and is super-sensitive. This is a common side effect of the greater occipital nerves finally being decompressed - they get "angry" and cause more pain for a while. It hurts to let anything touch her head, which means she is only sleeping a few hours here and there, so she's exhausted. But this pain will pass, leaving Harriet with either a greatly reduced migraine or (prayerfully, hopefully) no migraine at all.

This has been a hard couple of weeks, but Harriet, her dad, her sister and I can tell that we have done the right thing. Now, we sit back and wait for the healing. I'll blog a little later about some of the post-op specifics and some of the things along the way that have surprised us about this experience.

Please, Lord, let this be it!

Is this it?

Well, I haven't wanted to jinx it, but it is finally here...

Harriet is having migraine surgery tomorrow. They are decompressing the greater occipital nerves at the back of her head; removing a tiny nerve branch near each temple; correcting her deviated septum; correcting a "paradoxical turbinate," or as I call it, a weird-shaped thingie in her nose; and, while she's on the table anyway, removing two moles from her back.

The surgeon is quite confident that this will give Harriet significant migraine relief. As in, this could stop the perma-migraine she has had for 18 months straight. She could go back to being a regular teenager who just gets migraines once in a while. She could get her life back!

I'm afraid to hope, but also afraid NOT to hope.

Recovery will be painful, not to mention gross. She'll have tubes in her nose for a few days, as well as drains COMING OUT OF HER HEAD (ew) that I have to change every four hours for the next 3 to 5 days. I picked up all of the post-op meds today, and will spend an exciting evening getting all of this stuff organized so I can manage my kid's pain without OD'ing her.

Some people wake up from this surgery and can already tell that the migraine is gone. Others take a few months as the nerves have to settle down after being compressed and in pain for so long. And some find out that the migraine stopped at the surgery sites but, surprise, they also need the forehead nerves done too (which we would have to do 6 months or more from now).

We are just praying, and hoping.

Maybe, just maybe... Maybe this is it!

Please don't...

When a child is in chronic pain, please don't...

...Say things like, "I just don't know how you can make it through the day." This is so discouraging!

...Pepper her with questions about what she has tried. Ask her dad or mom later, when the child is not around to be stressed by a conversation about all of the tries - and failures - she has experienced so far.

...Lecture him about good nutrition. For one thing, it sounds like you think it is somehow his fault, his "bad" choices, causing his pain. For another, people with a chronic illness -- and their parents! -- are hyper-aware of everything they put into their bodies. They probably know more about nutrition related to their health issues than you do.

...Ask the Pain Parent, "Have you taken her to a doctor?" (Yes, people really do ask this. And it defies explanation.)

...Question whether it is "really that bad." It IS really that bad, and she will NEVER FORGET that you questioned her pain.

When a child is in pain, please do...

...Watch what you say to the Pain Parent when the child can hear you. Words hurt.

...When you have a suggestion, an idea, or a news article that may help, ASK FIRST: "I know you're really on top of this, but may I share something that made me think of you and your child?" We get so much unsolicited advice, often in the form of lecturing, that it is lovely to have someone ask us before launching into something. (We know you're trying to help, but sometimes we are overwhelmed!)

...Ask, "How are you feeling today?" This makes the question very specific and helps the child, and the parent, look at the pain in the context of just today, instead of the monstrous experience as a whole.

...Offer a hug, a shoulder, a minute of your time. Children in pain, and their parents, feel so isolated. We need to know you remember that we are hurting.

My own child in pain, Harriet, would add one thing to this list: Stop asking me if I drink enough water! She gets this question all the time. When she answers that she DOES drink enough water, they start quizzing her on how much H2O she drinks in a day, as if to prove her wrong. Some determined folks continue with a tirade on the importance of proper hydration even after we've established that the kid is, indeed, hydrated. Go figure.

Kids helping kids

Our young friend, N, is in the hospital and in terrible pain. This little girl is 10 years old and has some awful health issues, including nonstop head and abdominal pain that the doctors can't seem to address. Harriet has insisted on going to see N every day since she went into the hospital last week, even though Harriet herself is still dealing with her own pain.

Today, I watched Harriet walk into the hospital room where N was sobbing in pain, saying that she had no hope. Harriet -- who, let's remember, is only 15 years old -- sat right down on the edge of the bed and started whispering to N. In a few minutes, the tears had stopped and the two girls were talking about some pretty deep stuff: hope, God, pain... It was unbelievable. N's mom and I ended up going out into the hallway to give the girls some time to talk.

Pain has made these children old and wise beyond their years. It breaks my heart to see them suffer, but it heals my soul to see them help each other.

When no one understands the pain of your child, the feelings slide from terror to hopelessness to rage from one moment to the next. Today, these two girls showed a room full of grownups how important it is to help each other through our darkest moments. To fearlessly jump in and grab the hand of someone else who is hurting, even when we are hurting too.

Maybe especially when we are hurting.

"And if one can overpower him who is alone, two can resist him. A cord of three strands is not quickly torn apart." --Ecclesiastes 4:12

Sweet 16

Harriet turned 16 yesterday. She was in too much pain to have a party, but she didn't complain. We went out for a quiet, family dinner, and that was it in terms of celebration.

On Harriet's 16th birthday, here are the numbers ruling her life:

30+: Meds she has tried

24/7: When she hurts

21: Total days in the hospital

18: Months of constant pain

15: Injections into her head

12: Pills she takes each day

8-10: Her pain level

8: Neurologists she has seen so far

3: Physical therapists

3: Nerve blocks

3: Counselors/pain psychologists

And the one that is making us all nuts right now (drum roll, please):

14: Days waiting for Dr. Fancypants to schedule Harriet's surgery

Someone's in the hospital - now what?

Someone you know has a child in the hospital. You want to go visit, and boy-oh-boy do you want to help. Here are my recommendations for taking something on your visit that the child and his or her parents will appreciate and use. (I also think this approach works quite well for grown-up friends in the hospital!)

First, let them know you're coming. A surprise hospital visit is No Fun.

Second, ask what you can bring. But you have to ask the right way. Don't say, "Can I bring you anything?" They'll say no. Your average Pain Parent has a white-knuckled grip on everything as he or she tries to stay on top of the situation, and won't want to ask for help. So, you have to be specific and make it easy for them to accept small favors. For example:

"I'm going to bring you some munchies - is there anything in particular you and the kiddo want me to include?"

"I'm stopping at Starbuck's on the way to the hospital - what would you like, or should I just pick something for you?"

Third, pack a little bag of oh-no-someone-is-in-the-hospital goodies. It's not much, and it doesn't have to be expensive - these are simple things they'll be glad to have on hand. And you don't need a fancy bag, just whatever you have handy; I used an old Coldwater Creek bag last Saturday.

Here are a few ideas for things that you can put in the bag to take to your friend and their child:

1. Notebook and pen (to keep track of questions for the doctor, and to take notes on what the doctor says).

2. Saltine crackers, granola bars, apples, or other healthy and "easy" munchies. Make sure what you pack doesn't require utensils, won't make a mess, and doesn't have a strong smell that can upset someone who already feels awful. Remember, no need to get fancy -- I just raid my pantry.

3. Bottles of water and maybe a couple of cans of Sprite, ginger ale, or something you know they like. I know that my Pain Parent pal CP will be ready to murder someone for a Diet Coke by noon, so that's part of what I take for her.

4. A quiet activity that the child can do in bed. This can be something as simple as a sketch pad and colored pencils, an age-appropriate book, or a kit to weave friendship bracelets. Think twice before you send markers - again, anything with a strong smell can create more trouble for the patient.

5. Lend a few of your own DVDs so they have something to watch on the hospital's DVD player.

6. Today's newspaper and/or a magazine.

It's natural to want to DO something when a friend is sick. That's what I like about my oh-no-someone-is-in-the-hospital bags. You'll feel better taking something to help your friends, and they'll appreciate the thoughtfulness.