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?

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 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!

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.

Hugs can hurt

This week, I had the chance to visit with a Pain Parent friend whose 17-year-old daughter has chronic head, neck and back pain. She's understandably a very tough kid -- this pain has had her in its clutches for more than three years now.

As we chatted, this girl told me about an upcoming medical procedure-slash-test she has coming up. She told me that the doctor said if this doesn't find the problem, then there is nothing else that can be done for her.

That is WRONG. If the doctor doesn't know what else can be done, then the doctor should say, "I don't know what else to do for you," and help the patient figure out the next doctor to try. To tell anyone (especially a child) that there is no hope -- when there certainly could be hope, it's just with someone else -- is cruel. Pain is not life-threatening, and I think that's why so many docs see no reason to try anything new or different or admit that someone else might be better able to help. It's just pain, right?

But, back to our friend. I asked if I could do anything for her, and she said, "I could really use a hug, but..." and she winced. How sad is it to crave human touch but to know it will cause even more pain?

So I gave an aching child the lightest of touches, a very gentle hug that I tried to fill with all of the warmth and love I have.

Where do I start?

Hello. I'm a Pain Parent. I feel like I have so much to say to other parents who have children in chronic pain. But where do I start?

I'll keep fiddling with this blog until I figure out a way to post a timeline of my daughter's pain. We'll call her Harriet. She got a migraine on July 17, 2010 that has never stopped. Never ever. Excruciating pain, nausea, and sensitivity to light and sound every day and every night for almost a year and a half now.

We've seen neurologists by the dozen, chiropractors, physical therapists, counselors, pain psychologists, an otolaryngologist and a naturopathic doctor. Three hospitalizations, horrific medical procedures and a list of meds as long as your arm. Nothing touches Harriet's pain. (We are now on the trail of a possible new diagnosis and solution, but more about that later.)

During this journey, I've met a few other Pain Parents. It seems we're all having a similar experience. Doctors try a few things, get stumped, and then say it's depression or it's for attention. Then they tell you this is just "your life now." Never mind the child screaming in pain and pulling her own hair in agony. Never mind the basketball-playing, cross country-running, martial-arts-medal-winning kid who has had to give up everything to sit in a dark room alone with her pain.

No one tells you how to care for a child with chronic pain. No one tells you what to try next. And no one tells you how to handle it when your child begs, "Mom, it hurts SO BAD, please help me!" ... and you have nothing left to try.

And let's not forget the healthy kids in the family - we also have to make sure we're parenting them, too.

My heart breaks for the other Pain Parents out there, but I am so thankful for the ones I've gotten to know throughout this experience. If you have a child in chronic pain, YOU ARE NOT ALONE. There are other parents out there struggling not to cry when it's a three-month wait for an appointment with another specialist, putting on a brave face when the umpteenth prescription fails to help, and doing our best not to assault unfeeling receptionists and medical "professionals" who see no urgency in the fact that a child is hurting.

Email me any time for a shoulder. I may ask the same of you! Together I hope we'll be a little stronger than when we're alone.