Screaming at Heaven

I spent the last few days at Allume a christian bloggers conference for women. One of the most inspiring sessions I went to was led by Logan of Life for Dessert. Let me tell you that this woman is all kinds of amazing. She told the story of her fourth miscarriage and how she shared with the world through her blog how angry she was with God.

I, predictably, cried for a good half of her session. As she talked about authenticity I knew that I needed to share a story with you. Very few people know it. There is a lot of pain in this box that I have so carefully left on a tiny shelf of my heart. It’s hard to know where to start but it’s time to try.

On Tuesday January 31st at 8:30am I got “the call”  that changed our lives and within 48 hours we had a full diagnosis, Ethan went through two surgeries and started chemotherapy. Things moved so quickly I’m not sure I even brushed my teeth the first two days. And I didn’t really have time for a breakdown either.

That is until Friday the 3rd rolled around. Ethan was receiving several different types of chemotherapy by this point. I agreed to go home and have dinner with Justin while my mom stayed the night with Ethan. Unfortunately just as we were preparing to leave Ethan was hitting a bad point. His body was struggling, not with the chemo but with all of the dying cancer cells.

This sounds like a good problem to have, I know. Dying cancer cells = good. Unfortunately they die so quickly and there are so many of them that the body isn’t able to process all of the waste of the cells breaking down. It became a enormous burden on his tiny little body.

I watched as my son laid in his bed barely responsive and his heart beating wildly. I looked over his lab results with the nurses that showed his kidneys were overwhelmed. I listened as the doctor told me the next eight hours were critical and that dialysis in the ICU was a very real possibility.

I really don’t know how but my family managed to get me to leave as planned. I think I was in shock. I can’t explain the fear I felt broiling inside of me on the car ride home. I went from petrified, to horrified, to infurtiated in one 20 minute car ride. When the car rolled into our garage I told Justin to go inside and leave me in the car.

I heard the garage door close and it was like a dam broke.

I screamed. In the car, in the garage, alone. I screamed at God.

I have never ever yelled that loud in my life. At first just wrenching pain breaking out in the most primal way possible. Then words came and I screamed them too.

WHYYYYYYYYYY? WHY DID YOU LET THIS HAPPEN TO MY SON?

HE DOESN’T DESERVE THIS! THIS CANCER DOES NOT BELONG IN HIS BODY!

YOU TAKE THIS OUT OF HIS BODY RIGHT NOW! I WANT IT GONE!

I HATE THIS! TAKE IT AWAY FROM HIM! PLEASE, GOD, PLEASE!

For a good 15 minutes I screamed at the very top of my lungs until I had no voice and no energy left.

It hurts for me to remember. Not because I’m ashamed but because that emotion was so raw and so real. It affects me physically right now just thinking about it.

I needed to share this with you because it’s the truth. I was angry with God. He knew what the condition of my heart was, whether I was shrieking in the car or not. God can handle my anger…. this hideous fear blazing with pain. He can handle it because He is everlasting and unchanging. No matter how mad I am at Him, His love for me will never, ever waver. His mercy and grace will always infold me even in the midst of my wretched fury.

So if you are holding your anger as a wall between you and God, I have a suggestion. Break down that wall and let your anger out. Scream at heaven and let the Lord of compassion show you that you are still loved despite your pain and bitterness.

You see it’s not so much the fact that you are angry but what you do with your anger that matters. Will you let it separate you from the Lord or will you confront it, wade through the fire of it and make a choice to go beyond it?

PS: If you want to know how Ethan came through that night you can read the rest of the story here.

photo credit: paul bica via photopin cc

Flu Savvy: How to Stay Healthy This Fall

It’s that time of year again: flu season. A battle for every mom and especially for moms of kids with compromised immune systems. The flu vaccine is one line of defense against sickness but since it only protects against a select few strains, additional precautions are warranted. Anyone, vaccinated or not, can transmit germs that cause the flu. But before you become a complete germaphobe, let’s look at the most effective tools at avoiding germs and strengthening the immune system.

First Line of Defense: Avoiding Germs

  • Avoiding Germ Fests: unfortunately the top two places to get exposed to germs are: school/daycare and offices. School wins the prize for the widest spectrum of constant exposure. So unless you are planning on working from home or homeschooling, be sure to utilize other tricks for avoiding & killing germs while in those places. Be liberal with the hand sanitizer and hand washing during those trips and after.
  • The Right Way to Sneeze: I’m a Mythbusters fangirl. If you have Netflix streaming I highly recommend watching the episode about proper sneezing technique (S9:E6, Mini Myth Madness) or YouTube. It shows kids why sneezing into their elbow is so important. It protects you and others around you. If you sneeze into your hand you transfer all the germs you have on your hands to your face and vice versa.
  • Speaking of hands & faces, this is a great time of year to coach your kids to keep their hands off their face, away from their eyes, out of their mouth and out of their nose. One of the primary ways we share germs is by transferring them from our hands to our mucous membranes and visa versa.
  • Another Mythbusters episode (Flu Fiction, S8:E6) shows how casual contact in social settings spreads germs. It also illustrates how to avoid germs regardless of how germ-y other people are (watch Kari).

Playing Offense: Killing Germs

  • It goes without saying that proper handwashing is crucial. Teaching children to wash their hands can be fun! First of all, pick a short song… any song that they like and remember. They will need to sing it twice while they wash their hands. Wet their hands, apply soap and scrub the soap (above the sink, not under water) before rinsing. Make sure the scrub the “in-betweens” and backs of the hands, not just the palms. Ask them to sing the song once for scrubbing and again for rinsing. Both steps are equally important: we need to dislodge & kill the germs plus get them thoroughly rinsed off the hands.
  • Hand Sanitizer, or as we call it “hanitizer”, is a great second line of defense. Alcohol & triclosan based hanitizer can be very drying and irritating especially for kids. Our family prefers the CleanWell brand which is alcohol free & triclosan free (I also love their hand soap). Teach your kids to use it before snacking or after going through crowded public places. Hanitizer works best when you rub your hands vigorously while it drys.
  • Sanitizing Your House: The most important places to clean are: door knobs, appliance handles, light switches, toilet & sink handles, the TV remote, your computer keyboard, desks and your cell phone. Anyplace you touch with your hands a lot. Also replace your kitchen sponge very frequently and microwave it wet for 2 minutes at least twice a week. Wash pillowcases frequently during flu season.
  • How to Disinfect Surfaces: You can use a disinfecting wipe or spray. Either way the surface must stay wet for 4-10 minutes (depending on the product) in order for it to disinfect. This means you may need to wipe several times to get the proper kill level. I usually work in one area at a time, like the kitchen, walking around in a circle and wiping each surface over and over again. I do this once a week during flu season.

2nd Line of Defense: Strengthening the Immune System

Note: if your child is currently receiving chemotherapy, please check with your oncologist before giving any immune boosting supplements. Different oncologists have different protocols regarding supplementation. The rest of your family can take them as needed to avoid bringing illness into the home. It’s easier to keep your child healthy when you are healthy!

  • Vitamin D is a fat soluble vitamin that plays a large role in immune function. It is produced naturally by the body when your bare skin is exposed to the sun. During the winter this is harder than normal, so taking a high quality D3 vitamin is advisable. Most multivitamins do not contain nearly enough vitamin D. Click here to read more and see recommended doses. It’s important to get your vitamin D levels checked on a regular basis.
  • Elderberry extract: one study found it reduced flu symptoms and shorted duration by four days
  • Zinc: another vitamin crucial to healthy immune function. You can take zinc as a lozenge, syrup, tablet or in food (oysters!). Despite recalls I personally love Zicam. I use it as soon as I feel any nose/throat tickle coming on.
  • If you choose not to get the flu vaccine, you have another immunization option: Homeoprophylaxis. It’s worth researching.
  • Eat immune boosting foods: blueberries, pastured eggs, bone broth,
  • Reduce sugar intake: sugar decreases the ability of your white blood cells to kill germs by 40%
  • Get regular exercise: one study found that people who exercised regularly (five or more days a week) cut their risk of having a cold by close to 50 percent

photo credit: MissMessie via photopin cc
photo credit: Robert S. Donovan via photopin cc

Overcoming “He has no idea how much I do.”

I hear momcologists complain about their husbands often. I’m guilty too. The most common complaint: “he has no idea how much I do”. This is usually coupled with a feeling of intense burden in taking responsibility for all the care their child is receiving.

For most kids with medical challenges, 90% or more of the treatment plan will rest on the mom. Some of this is by our own design. I don’t know a single mother who doesn’t want to be sure their child is receiving the very best care. We fall into the control-freak trap pretty easily. We want to know all the details of what to expect and we usually end up shuttling our child to all the appointments and giving all the medication.

So we get in a pinch when we start to feel under appreciated for how much time we invest into our child’s care on top of feeling overwhelmed by the responsibility. Bitterness starts to creep in, followed by resentment. This is a yucky place to be in and over time will damage your relationship.

Please understand that men don’t usually sense this depth of complex emotion. Most of them think: “Wow, this cancer treatment is working out pretty well, things are ship-shape, my wife’s got it covered, no need to interfere.” It is not because they don’t care. It is usually because they don’t have a grasp of the scope. Dumping guilt trips or giving the cold shoulder is probably not going bring progress. So let’s create a plan for helping your husband understand.

  • Our treatment calendar & medication center is in the kitchen. I try to keep everything labeled and updated.

    The benefits of sharing the burden:
     Now I agree there is a very strong case to be made for one person having an eagle eye view of the treatment plan. Things will be less likely to fall through the cracks that way. However, this does not mean that same person must facilitate every single part of the treatment plan. If you want to be appreciated for what you do or receive help, then you must first start by creating awareness and delegating responsibility. This also becomes crucial if you are sick or otherwise unable to facilitate the treatment plan for a while. Someone else should be able to to pick up where you left off at any time.
  • Creating a visual treatment calendar: Print out monthly calendars for at least the next four months and tape them up on a wall together so that all four months can be seen at once. Divide each day in half (top & bottom).
    • In the top box for each day: Write in pencil all planned treatments given at the clinic even if you don’t have fixed appointments yet. For example: if you know your child will receive an IV medication on the 10th day of this phase of treatment, pencil it in now and add the appointment time later when you know it. This is your appointment calendar… things you have to leave the house to do.
    • In the bottom boxes: Pencil in any home care such as oral medications, supplements or hickman maintenance. Write all the basics that get taken for granted but are required for your child’s comfort, safety or treatment plan. This is your medication calendar. As things change, erase and update.
  • Creating a medication dosage chart: post next to your treatment calendar a detailed medication dosage list. List each medication or supplement separately and include: the amount given, when to give it and any notes or instructions. So if your daughter will only take her antibiotic in liquid form mixed with chocolate syrup, write that down. When a dosage changes, erase and update. You may need to print & fill out a new dosage chart for each phase of treatment.
  • Share it: When your treatment calendar & medication dosage charts are complete, ask your husband to go over them with you. Tell him that you will do your best to keep them updated. Make an agreement that if there is anything he is responsible for, you will but a big star next to it. Let him know that each day at dinner time you will try to remember to give him a treatment update of how the day went.
  • Using Cozy to share calendars: I believe the visual calendar is non-negotiable if you really want to see a difference in the level of awareness and reduction in resentment. You can go digital as an extra bonus. Some moms & dads love technology and need to carry the plan with them everywhere they go. If that’s you I highly recommend creating a Cozy family calendar for appointment reminders. Once you have any type of appointment scheduled for your child, add it to the calendar and you can set it to automatically remind everyone who is sharing the calendar.
  • Delegate things: Usually there will be one aspect of treatment that becomes a sticky spot for you. Maybe you have a very hard time coaching your child through it or it causes you an unusual amount of stress. Sticky spots are great to delegate. Help your husband to take ownership of one particular treatment or type of appointment. Schedule it to his personal calendar and allow yourself to let go of it. It’s amazing how kids will respond totally differently depending on whether mom or dad is present. You may be surprised to find that something extremely challenging for you ends up being a piece of cake for him. This does n0t make you a failure, it just means you have different specialties. Nobody can do it all and its good for your child to experience the support of both parents.

These are just some ideas to try. They may or may not work for your family, of course.

PS: What tricks have you found to share responsibility and reduce resentment in your marriage? I’d love to hear what works for you. Leave a comment!

Five Things Your Child Needs from You During a Blood Draw

You’re the mom. Do you know how much power you have to encourage your child? During an blood draw or IV start, the way you react to and control the situation will in large part determine how your child will respond. We can either choose to feel petrified by that or feel empowered by that. I hope in some small way it makes you feel good to know that your influence matters. In other posts about IVs and blood draws I’ll talk about specific strategies for pain relief and coaching skills. Here let’s just talk about the basics. I’m going to speak using the pronouns he/him for this article but please know everything applies to girls as well.

  1. He is looking to you, his emotional mediator, to know how to react to what is happening. This is the time to pull up your big girl panties, muster your courage and put on a encouraging, calm but focused face. Deep breaths, staying at eye level and being within 18 inches of his eyesight is absolutely crucial.
  2. He needs to know that even though you aren’t the one doing the procedure, you are in charge of who is touching him and what they are doing. That means you need to step up and pace the nurses. You tell them when to start, you tell them if you need to take a break, you tell them if you need to stop and try a different approach.
  3. He needs very short, clear, positive expectations of what is going to happen. Less is better. As women sometimes we slip into to-much-information mode. The younger the child, the less detail is necessary.
  4. He needs reassuring, steady touch, verbal encouragement and visual distraction during the procedure itself.
  5. Immediately afterwards he needs enthusiastic praise and a chance to tell you how he feels about what happened.

Photo credit: Jagrap via photopin cc

How to Coach Your Child Through an IV Start

So before I get to the nitty gritty we need to talk about scenarios for a child getting a blood draw or IV. There are typically three of them:

  1. You are in an emergency. There is no time to waste and it must be done quickly.
  2. It’s an unexpected procedure and it’s happening now but you have a bit of time to prep (at least 45 minutes).
  3. You know days or weeks ahead of time that it will have to be done.
Let’s talk about strategies for scenario one first: an emergency. It goes without saying that this is a high stress situation. You are going to be freaking out inside and it’s very easy to feel paralyzed. I want you to use that adrenaline to laser focus on your child. Get close and get engaged. These tips are usually helpful for ages 3 years old and work best if they don’t have pre-existing needle fear (more on that in later posts). You’ll need to adjust what you say for older kids. Let’s set this up:
  1. As soon as you know an emergent IV/blood draw is necessary, tell the nurse you want needle-free J-Tip anesthetic. Almost every ER & medial center has this and it will be essential. The nurse may hedge a bit but I strongly recommend you stand your ground. Say with authority “We need to have J-Tip anesthetic for this placement. Can you grab that while I tell my son what to expect?”
  2. If at all possible use a second adult that the child knows to help you (dad, grandma, etc). Have the child sit on that persons lap. You will then kneel or sit in front of the child and next to the arm the nurse won’t be working on. The person who is holding the child will slip their hands loosely around their chest and shoulders as the procedure starts. Their responsibility is to keep the child’s body & upper arm still. You will slip your hand onto the child’s wrist as the procedure starts to make sure they don’t move their lower arm or hand.
  3. Get face to face with your child and say: “We need to put a teeeeeeeensy tube in your arm to get some blood/give you medicine. We are going to do this as quick and easy as we can, okay?” *Give a smile & wait for an okay back.* “The nurse is going to use a magic mist to make your skin very sleepy so that the tube will feel like a tickle, okay?” ** “The magic mist makes a fizzy pop noise like when we open a soda can, doesn’t that sound silly?” **
  4. Hopefully the nurse now has everything prepped and ready to go. Your first challenge is sometimes going to be the arm tourniquet as kids tend not to like the feeling. Tip: have them place the tourniquet over their shirt sleeve or a piece of fabric if possible. This minimizes the pulling of hair and skin. Words to use “Before we can do the magic mist, we need to give your arm a squeeze and feel around with our fingers. You can watch if you want.”
  5. When the nurse has found the vein and is totally ready, say “Look straight into my eyes while we wait for the fizzy pop sound of the magic mist, okay? Guess what? Your only job is to hold your body still as a statue. When I have to hold my body still as a statue, I like to make my eyes wiggly. Like this…. Can you do that too? Good job!”
  6. You are in full distraction mode now. Talk, talk, talk. Continue to reinforce holding their body still as a statue and distract by doing wiggly eyes and a silly face contest. The point is to keep their eyes away from the procedure at all times.
  7. Once the J-Tip is done, they should really feel nothing else. It is extremely fast and effective anesthesia which is why in an emergency situation it’s pretty much non-negotiable for my kids.
  8. Be very, very careful with your words. Children are highly suggestible. Even saying something as simple as “It’s barely going to hurt at all.” plants the possibility of pain in their mind. Words not to use: needle, shot, poke, hurt, pain, ouch, owie. Even “be brave” can create an expectation that this is something to be afraid of.
  9. If your child asks “is it going to hurt?” choose your words with caution. The best answer you can give is: “This is the extra special teensy tube nurse and she knows all the tricks.” ~ “The way to make this quick and easy is to use the magic mist and hold reaaaaaalllllly still, okay?” Don’t repeat the word “hurt” back to your child. Quick and easy are the words you want to emphasize along with telling them how they can help make that happen. You’ll also notice that I end almost every phrase with “okay?”. I’m angling for a subconscious agreement because “okay” is a child’s natural response.
  10. When you are finished, reinforce! “Wow! You were the best still statue ever! Are you so proud of yourself?”
Now on to scenarios two and three. If you know ahead of time you are going to have this procedure your best plan of action is to prepare yourself. Read over these tips several times. It is worthwhile to make this a pleasant experience for your child because it will set the tone for future procedures. And, honestly, we have really great ways of preventing pain during draws if you know to ask for them. Do not ever let a nurse talk you out of using the numbing options. Stand your ground.
If you have a child under the age of 9, I do not usually recommend giving them advanced notice of the procedure. If you have a child over the age of 9 or 10 then you may want to give them a gentle heads up on the day of. The best reassurance for that age group is to tell them you have arranged really great numbing options so that they can relax. No matter the age, bring several distraction tools: iPad, books, iPod, etc
  1. Have the nurse check the child’s veins and tell you the place they are going to try first and second. About an hour before the procedure apply a topical numbing cream to all the areas that might be used. This cream is usually called EMLA or LMX. It is globbed on and covered with a dressing. In my experience you need at least 45 minutes for it to be completely effective. Don’t fudge on the time, longer is better.
  2. I have tested EMLA cream on myself, it is extremely effective which is why it is completely non-negotiable for my kids anytime they have any type of shot, IV or draw. Once the skin is numb it stays numb for quite some time. This even helps with post-procedure discomfort.
  3. As you are applying the cream say ”We need to put a teeeeeensy tube in your arm to get some blood/give you medicine. We are going to do this as quick and easy as we can, okay?” *Give a smile & wait for an okay back.* “I’m going to put on this magic cream to make your skin very sleepy so that the tube will feel like a tickle, okay?” ** “Doesn’t that cream feel cool and nice?” ** “This magic cream takes a little bit of time to work so we need to leave it on for a while, what kind of game do you want to play while we wait?”
  4. Bring a second adult that the child knows to help you (dad, grandma, etc). Have the child sit on that persons lap. You will then kneel or sit in front of the child and next to the arm the nurse won’t be working on. The person who is holding the child will slip their hands loosely around their chest and shoulders as the procedure starts. Their responsibility is to keep the child’s body & upper arm still. You will slip your hand onto the child’s wrist as the procedure starts to make sure they don’t move their lower arm or hand.
  5. When the cream has had to time to work and the nurse is prepped and ready, get in position face to face with your child. Your first challenge is going to be the arm tourniquet as kids tend not to like the feeling. Tip: have them place the tourniquet over their shirt sleeve or a piece of fabric if possible. This minimizes the pulling of hair and skin. Words to use “We are going to give your arm a squeeze with this rubber band and feel around with our fingers. You can watch if you want.” “Can you feel how sleepy your skin is right there?”
  6. When the nurse has found the vein and is totally ready, say “Look straight into my eyes while we let the nurse wash off your arm, okay? All you are going to feel is tickles. Guess what? Your only job is to hold your body still as a statue. When I have to hold my body still as a statue, I like to make my eyes wiggly. Like this…. Can you do that too? Good job!”
  7. You are in full distraction mode now. Talk, talk, talk. Continue to reinforce holding their body still as a statue and distract by doing wiggly eyes and a silly face contest. The point is to keep their eyes away from the procedure at all times. Alternatively you can hold up a mobile device playing their very favorite movie or show. It needs to be held so that your child’s face is turned away from the procedure.
  8. Be very, very careful with your words. Children are highly suggestible. Even saying something as simple as “It’s barely going to hurt at all.” plants the possibility of pain in their mind. Words not to use: needle, shot, poke, hurt, pain, ouch, owie. Even “be brave” can create an expectation that this is something to be afraid of.
  9. If your child asks “is it going to hurt?” choose your words with caution. The best answer you can give is: “This is the extra special teensy tube nurse and she knows all the tricks.” ~ “The way to make this quick and easy is to use the magic cream and hold reaaaaaalllllly still, okay?” Don’t repeat the word “hurt” back to your child. Quick and easy are the words you want to emphasize along with telling them how they can help make that happen. You’ll also notice that I end almost every phrase with “okay?”. I’m angling for a subconscious agreement because “okay” is a child’s natural response.
  10. When you are finished, reinforce! “Wow! You were the best still statue ever! Are you so proud of yourself?”
Well those are my basic tips and strategies for blood draws and IV starts. I’m going to follow up with a post soon on how to handle the situation when things don’t go as planned or you have a very fearful child.

The Hardest Thing

On January 30th, 2012 I did the hardest thing I have ever had to do as a mom: I held my screaming seven year son down in order to have his blood drawn. I listened to him beg through his tears “I don’t want it to happen”. At the time I silent cried and powered through while thinking that it was such a waste of effort. I almost called the whole thing off. After all, he was just a little bit sick… two weeks of being worn out, with an ear ache and swollen lymph nodes. It’s just mono. Is it worth traumatizing my son for a blood draw over mono?

On January 31st, 2012 at 8:30am I took the hardest phone call I have ever had as a mom: the pediatrician telling me I needed to take my son to Children’s Hospital immediately because it was clear from the bloodwork that he had leukemia.

What followed was a month of hard things. A month of coaching, cajoling, crying, fearing, praying. Watching toxic chemicals being injected into my sons precious body by a nurse in a hazmat suit. Catching vomit in a basin while I held his head and tried to keep him calm. Screaming at the top of my lungs in my car in the garage so that no one would hear me. Learning the complicated day by day chemotherapy plan and making decisions about research studies.

So many hard things.

And yet in the eight months that have now passed I am thankful for the hardest thing I have not had to do. I have not had to say goodbye to my son and that is the best thing.

So let’s talk about coming to terms with The Hardest Things. I don’t know about you but it’s easy for me to wallow in memories sometimes. Like melty-mascara-puddle-of-ugly-crying-tears wallow. But I don’t want to live in that place and I certainly don’t want to live my life from that place. So how to we move past sticky memories of The Hardest Things and find true freedom? Here is one technique I use regularly.

  1. Spend some time really come to terms with it. I’ll be honest, this is probably going to involve a lot of crying. If your Hardest Thing creeps up on you and then you shut down those emotions repeatedly, you are only deferring the emotion for later. Instead of waiting for it to pop into your mind (why this always happens to me in the car, I’ll never know) I want you to choose a time to confront it. Maybe that is right now, maybe you need to pick a date and write it on the calendar.
  2. Get writing. I want you to to sit down with some paper and a good pen and I want you to pour whatever comes to mind about your Hardest Thing on the paper. No punctuation, no grammar checks, no spelling corrections. Write as fast as you possibly can. You are not writing a story to be saved for posterity, you are dumping your brain on a page. You may spend lines and lines repeating yourself just to relieve the emotion. I once wrote “I hate this. I hate this. I hate this.” for half a page.
  3. Write emotionally. The facts are going to be part of this exercise. Get what happened out on the page but also focus on how it made you feel. Write what people said and then what you thought about it. Write things that invoke the senses. Write about touch, taste, sound, smell. Anything that is a trigger for the memory should flow onto the page. Do not censor yourself! The point is to release what is bottled up inside you. It doesn’t matter if it doesn’t quite make sense or doesn’t look nice. In fact it should probably look ugly, almost illegible.
  4. Decide what to do with it. Once you are done you can decide what to do with the pages you wrote. Some people fold them up and put them away to be read years later. Some people burn them. For me, once I write it I’m done with it. I don’t reread what I wrote. Ever. I keep it but only because it’s in my journaling book.

Do I still think of my Hardest Things? Yes. Frequently. But it is typically in a simple, remembrance type of way instead of a funky, wallowing type of way. I can think about them and not have a panic attack. I can think about them and still feel hope & joy. For me, this writing technique has become a vital part of my self care. I hope that it’s helpful for you too.