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.