Tuesday, July 12, 2016

New Identity

For better or worse, this blog has become a journal for me.

Tonight's Celebrate Recovery was tough. We watched a video testimony of a mother daughter team, both recovering addicts, both made major mistakes as moms. The mom talked about her own pride issues and how it kept her from drawing close to God. The daughter spoke about her unforgiveness towards herself and how that kept her from recovery.

I was surprised by the emotional explosion their testimonies set off in my heart, I really wasn't prepared for it. When we went to small group time, I ugly cried, even though I couldn't really understand exactly what hurt so badly.

I feel so much unforgiveness towards myself. I hate that I delayed Grace's diagnosis by not catching her bruises for weeks after the cancer started. I feel I let her hurt because I didn't have the guts to stand up to the ER doctors and demand more tests.  I can't seem to shake the feeling that I could have done something to stop it. I feel I broke promises that I made to protect my kids no matter what.

I can't seem to allow God's forgiveness to heal me because I don't want to be forgiven, not by God, not by me.

If I allow myself to feel guilty over her cancer than I can continue to pretend that I caused it. Obviously I didn't, but by pretending I did, I retain some feeling of control. The only alternative is to admit I have absolutely no control over cancer, over Grace's life, over my life. I think only people whose lives have been completely out of control can understand what I'm trying to say. It's terrifying. It requires total trust in God or total despair. There is no middle ground.

I didn't really realize that I was trying to keep control by not forgiving myself until tonight. I didn't realize it was pride. I was trying to be God, by trying to control Grace's cancer and also by deciding that his forgiveness wasn't sufficient.

I also realized that I have made an identity for myself that is in opposition to God. Since I was very young I had this image of a super-me. I saw myself as capable of withstanding great pain, overcoming all obstacles, a survivor, a healer, a savior...and for the areas I lacked, I condemned myself. This is the most tidy and neat form of pride that exists.

The pain I've been keeping inside has been creeping out. Lately I've been angry all the time, hurrying the kids for no reason, making stupid tasks important, and totally exhausted. Which makes me condemn myself more. I can no longer have this identity if I am to be healed by God.

I loved what "Ellen" said tonight at CR, 'If I had known back then what I know now, then I wouldn't have done it. So I can't judge myself for it, I have to forgive myself. And just say 'Jesus help.'"

In order to forgive myself I have to first see myself as someone who didn't know it all back then. I have to admit I never was the super-me and then I have to forgive and accept that un-super-me. Just the way Jesus has forgiven me. I have to see myself as Jesus sees me, totally broken, totally forgiven, totally redeemed.

I have to accept that I have no control over life, death, or cancer. I have to rely on Jesus, and trust that He is good, even when life is devastating. I have to accept his forgiveness and accept that he loves me as I am, not as I should be.

I have to discover myself, to be the just-me-not-super-but-not-condemned who can make mistakes and forgive herself.

I think I will.

Monday, June 13, 2016

Faking It

Life is busy. I realized that I've been keeping it that way on purpose...or subconsciously on purpose. But sometimes the real thoughts and emotions slip out at the most unexpected times.

Today at the park I was talking with two mamma friends and we were discussing our lack of time for reading the Bible and prayer. I mentioned that I am still struggling with forgiving God for what happened to Grace. That's not something I normally say out loud. Actually, its not even something I allow myself to think about. But once I said it out loud I realized that is exactly how I feel. And I feel so guilty for feeling that way, I avoid God even more.

I really appreciated my friend's advice. She said it's ok to feel that way. She said that God has made our relationship with him mirror marriage. She said that when we have a bad day with our spouse, we don't quit. When we have a difficult week, we stay in the marriage. Even if it's weeks or even a year of disconnect, we continue doing the right things, and in time (if there aren't any hidden/serious issues) the marriage will work itself out. After 14 years of being married, I know this advice is true.

I don't hear God when I pray. I don't feel him when I worship. I am uninspired by his Word. But I'm still here, doing the right things, waiting for the relationship to work itself out. I think that's the more true definition of love. Love isn't just what we feel like doing. Love is what we do when we don't feel anything.

And I think that's faith too. Trusting God when there are no feelings.

Today I was thinking a lot about cancer as we were driving to a Michael Hoefflin mini-golf event. I was thinking about Grace's cancer free carnival. I was wondering why I decided to have it now instead of next year. In all honesty, I think about the possibility of Grace relapsing almost every day. I want to celebrate her cancer free, but I don't have the feelings of excitement or even thankfulness.

Mostly apprehension.

I think I wanted to have the party now, because if she relapsed, then we wouldn't be able to have the party for a long time. I wanted to make sure it happened in case anything bad happened. I am so terrified of the chance of relapse that I refuse to think about it. It sits like a quietly simmering pot, hot enough to scald, but not hot enough to boil over. When it simmers, it can sit there for a long time and be ignored. That's what I've been doing. Feeling the heat, but refusing to figure out the real problem.

The real problem is I worry that if Grace relapsed, that I wouldn't be strong enough to handle it a second time. That my faith would give out. I don't have a surplus saved up should we go through it again, I'm still trying to replenish from before.

On my drive today I was listening to worship music and it was like God picked the playlist. All the songs were about how strong He is. I realized that I was fearful that my faith wouldn't be strong enough a second time...but in reality, it never was. It was His strength, his faithfulness, that got us through the first time. It had very little to do with me from the start.

That's where the joy of salvation springs from- from the realization that we can do nothing for ourselves spiritually, and that God has done everything for us because of his great love for us.

I don't think I will every feel totally at ease again in my life until all cancer is cured. But even then death will find us another way. But God has rescued us from death. I don't have to fear cancer coming back because the worst that could happen is death, and he has overcome it. And it won't be my strength or faith that will earn that rescue, it's what Jesus did on the cross.

It's the most basic Christian belief, but somehow the truth of it has escaped me for some time. Today that truth turned off the simmering pot, and instead of feeling apprehension, I felt gratitude. Peace. Instead of feeling guilty for not "feeling" faithful, I will accept that he accepts me in this place of quiet obedience.

Tuesday, April 5, 2016

What to do when your child gets angry at you?

Another cancer mama has asked me advice on "what to do when your child gets angry at you because they have cancer."

Grace was diagnosed with high-risk PH+ ALL two weeks after her fourth birthday. Because she was so young I became the cancer to Grace. "Why are you letting them do this to me mommy?" wasn't a question I could adequately answer for her. 

It was mommy who held her down to be poked with needles.  It was mommy who gave her the medicine. It was mommy who made her hold still for the doctor. It was mommy who said no to the friend's party, no to preschool, no to the park. 99.9% of the time, it was me, in Grace's eyes, who forced the effects of cancer on her.

Children aren't old enough to realize that the only other option would be death. Death is an abstract concept for kids and therefore they have no gratitude for you working so hard to keep them alive. They just see the limits and pain. And they see you doing it to them. Grace needed me, and she knew that, but she also resented me for that help. She was so angry. So angry. And she directed all her wrath at me. Not only was I exhausted but I had a kid furious at me for taking care of her.

We found a few solutions that helped immediately.
  • Give pre-approved choices whenever possible. "Do you want to have your ears checked first, or your throat checked first?" I remember one time Gracie blatantly refusing to lie down so the doctor could examine her tummy. "Will you put your head on the left or the right?" I asked her. "The right!" She shouted, triumphant to have control. Of course it was control I handed to her.  Cancer kids are stripped of almost all their choices. Any pre-approved options you can give them will help them feel like they retain some of their power. Word of caution: don't give open ended questions like "would you like to take a bath" unless you can live with their choice. Two options tends to be best.
  • Keep the family rules. I remember one of the first things we were taught when Grace was diagnosed was to continue to hold her accountable to our family's rules. We didn't listen. We eased up on the rules and the consequences. To our surprise, Grace got even angrier. The advice was right. 
    • When kids are in control of their parents they resent the responsibility, even as they fight tooth and nail to get it. The world is a scary place for them. If we are weaker than our kids how can we protect them from the even scarier and bigger world? They need us to be strong so they know we can protect them, guide them, and love despite their outbursts.
    • Also, kids are super smart, even the young ones. If they see you suddenly stop giving them consequences then they figure they must really be sick, really weak, no longer capable of doing the right thing. By holding them to the basic family rules like no hitting, kind words, bedtimes (as much as possible), sharing, it helps them feel strong. It’s also one less change in their rapidly changing world. Kids feel proud when they do the right thing. Don’t take away that opportunity.
    • Obviously you can't give spankings to cancer kids but there are many, much more effective consequences available, and I'd recommend Love and Logic for ideas on that.
  • Find new activities for them to excel at. Grace used to love riding her scooter and playing on the playground. For a while those activities were either too difficult or too dangerous. So we started baking and arts and crafts instead. She really enjoyed those activities and it kept her mind off what she couldn't do.
  • Play Therapy. When we could, we had her dolls act out what she was feeling with life. I'd play the doctor or nurse and her dolls could ask them questions she was too afraid to ask about herself. I also played with her a LOT more. Since she didn't feel well enough to self entertain and couldn't play with friends, I became her most constant playmate. That was hard for me but it built up intimacy. We noticed that the intimate playtime became really special to both of our kids when they were stressed out.
These are some tips that we've learned along the way.

  • "I can tell/hear/feel/see you feel ___________, but it's not ok to ___________. You have choices to calm down and then we can find a solution." 
    • First, it recognizes the feelings. Kids feel safe when they're allowed to feel around you. Even if they are doing it "wrong," help them put words to the tantrum/screaming/hitting/etc and it helps bridge that communication gap. It helps them know you're on their side and willing to help.
    • It puts limits on bad behavior. "...it's not ok to scream at me/talk rudely to me/hit me/ignore me..." are all acceptable limits. 
    • It teaches the child they can control their emotions. Choices can include: getting hugs, squeezing a toy, yelling in a pre-approved place, jumping jacks, taking deep breaths, etc. 
    • It allows for fair consequences. If a child does not choose to calm down and work out the problem then you can have consequences: timeout in pre-approved tantrum spot (1 minute per year old), having an "energy-drain," or loss of TV or iPad time. We've found these to be pretty effective.
  • "I know." This one is a simpler version of the above, helpful when you don' have time to think. "I hate you for making me do this mom." "I know." "I don't want a poke." "I know." It's an empathetic reply that doesn't get into an argument. "I want to go home." "I know." It's a good statement for those days when you're too tired to remember your name but it helps your kid know that you're on their side. 
  • Redirect their anger. I remember the first time I told Grace that I hate cancer too. She was shocked. "I hate cancer and I am angry that it hurts you," I told her. It put us on the same team. "But we have to get you healthy, and this is how we do it and we can be brave together," I told her. Help them redirect their anger to what the real problem is. I remember one time Grace wanted the nurse and I to scream with her when she got an NG tube she hated. We did, we yelled so loud! And we were on her team, hating her cancer with her that day.
  • When in doubt, structure! Structure! Structure! We learned this from Grace's therapist. Little kids strive on structure. They need to know what happened yesterday, what happens today, what’s going to happen tomorrow. Anything you can do to help them feel like they know what to expect in their lives will help lessen the stress. When Grace was first diagnosed we thought it'd be better to let the hospital trips be a surprise so she wouldn't be stressed out in advance. The older she got the more we let her know in advance and the more she would ask. She wanted to know how many days until the hospital, what was happening today, what was happening tomorrow. It helped her feel secure knowing what was coming and we could practice in advance to be brave. And by being honest with her, even letting her know when she'd get pokes, it helped her know I was on her team.
Even with all these ideas in practice we had some good days and bad days. I think what's most important to remember is to hold onto the good moments and let go of the bad. It's a beautiful thing that we got to tell Grace every morning, "God has forgiven us and given us new mercies today." We started fresh. 

Most of all, remember that your child does love you. It's the cancer they hate. Even if they can't express it, they love you and need you. By showing up every morning you are being the parent they need you to be. It's a hard job being mom, but you should be proud of yourself. 

Tuesday, March 29, 2016

Listening and Discipline Formula

We love Love and Logic. It has saved our family a thousand times over, especially when Grace was diagnosed. It really helps figuring out how to make parenting and consequences fair and simple and prepares children for the realities of growing up. But it lacks how to really listen to and sympathize with your kids. So recently we've also been reading Dealing with Disappointment.  It's a little dry as it's more a text book than a fun read, but it's brilliant and has filled in the gaps for us as parents.

We were starting to realize that our kids were often tantruming because they haven't the skills of self-calming or they just couldn't communicating the real problem. Often after a giant tantrum we gave them a calm and fair consequence (time-out) for their screaming fit but afterwards we were left with kids just as frustrated as before. We hadn't dealt with the real problem, only the most obvious behavior.

Our new formula, derived from the Dealing with Disappointment book, acknowledges the child's feelings, even mid-tantrum. I want to point out that acknowledges doesn't mean agrees with. You don't have to agree with how they feel about the problem. Acknowledging their feelings helps them feel understood and safe. Often their feelings are so intense that they can be frightening for a young child.  Acknowledging helps kids feel like their not against these intense feelings by themselves. 

And remember, there's no such thing as "you don't/shouldn't feel that." Emotions are 100% individual and can't be argued against, so don't bother. Telling a toddler, "you shouldn't feel sad because your cup spilled," won't ever work. Ever. But watch how "I can tell you feel sad because your cup spilled" works. 

When Luke started jumping into hysterics the other day because Grace knocked down his block tower, just saying, "I can see you're very angry," stopped his tantrum mid track. Grace then was able to make her wrong right by rebuilding it for him. Some days recognizing the feeling isn't enough to stop the tantrum. Then we note what action (screaming) isn't ok in our house and ask him what he can do to calm down.

Grace prefers to talk it out. Luke responds to deep breaths and jumping jacks best. Then we try to figure out what the real problem is and what he can do about it. Often we have to go back to calming techniques mid-talk until he's calm enough to work it out.

The other day after using this formula we found out that his tantrum was over the basketball hoop being too high. One he was calm the solution was as simple as lowering the hoop. He wasn't trying to be bad, he was just overwhelmed with frustration and lacked the skill to communicate it. Some days (like all day yesterday) Luke picked his tantrum spot as his calming technique by default when he refused to calm down. Once he had gotten some screaming out in his room we went through the formula again. 

As Chad and I have been trying out this formula it made us realize WE don't know how to have feelings. We both stuff them inside. So we went to our therapist Teri loaded with questions, because how can we teach our kids it's ok to feel if we don't allow ourselves to?

What she said was so simple, but so groundbreaking for me. She said feelings are safe. Feelings are meant to be signals to help you understand a situation. After you listen to their input you then decide what action you will take. The feelings don't dictate the action, nor do they control you. They are simply markers, or informers. The action that comes after is a choice that we make ourselves.

I had always assumed emotions drove actions. I was afraid to hurt the people I love. That's why I have learned to control my feelings so completely that I stopped myself from feeling them at all. I was afraid that if my feelings were out of control then my actions would be out of my control too. 

Chad said he felt he couldn't feel negative feelings such as anger because he believed it was sinful. I've certainly felt that too, that feeling sad or scared or angry was the same as being faithless. After Teri's simple explanation of the role of feelings we realized we could allow them into our lives and into our family.

We also got these Feeling Cards to help the kids learn words for their feelings. Most children have sad, mad and happy figured out. But disappointed, frustrated, anxious take some practice to define. 

We use these cards during dinner. We used to ask Grace how her day was and got the customary "good." Now she searches through the cards, holds one up and says "I felt left out when no one played with me at recess." Wow. What a difference. It really has given us more to talk about and we all take turns with our card. Again, Luke is a little young for this, but he loves trying and he's learning new words every day that he uses to tell us what his life looks like to him.

These were also the cards we used for Grace when she was diagnosed (at four, the same age Luke is now) to help her communicate her feelings about cancer and her treatment. It made a big difference trying to comfort Grace if we knew she was crying because she was anxious. If she was crying from frustration we could comfort her differently. These cards were instrumental in bridging that communication gap.

I just want to add that having feelings isn't the whole solution, just as only consequences isn't the total solution. It's that balance of feelings and actions that needs to happen for a person to be whole and healthy. So while we're glad that Grace and Luke are able to have feelings, we also keep them accountable to their actions with fair and calm consequences. 

Family Meetings

We've been working hard lately, Chad and I, to figure out how to be better parents. We've been reading like crazy, praying like crazy, anything to keep us from going crazy because of our kids. We've found some pretty great solutions that we think long term will help a lot.

For one thing, after hearing this podcast by "Parenting on Purpose," we realized our conversations with our kids are often on the surface level. We want to get into deep communication where trust and intimacy happen, but we didn't know exactly how.

One afternoon I was praying, asking God to give us help. Grace has been so angry for so long. We were getting good at the right way to discipline but we were realizing that we weren't touching our kids hearts, it was rules, consequences and lots of frustration on all our parts. And I swear, as I was praying, I heard "family meeting." I have read about family meetings once or twice before, and I really thought it was dumb- they seemed overly formal, boring and unnecessary. But I Googled it and found this TedTalk that convinced me otherwise.

I put together this family meeting worksheet and I also made a Family Cube. We have a stack of them in a three-ring binder and now the kids look forward to Sunday afternoons for our family meeting. We have good snacks to help keep the kids interested and then we do something fun as a family after as a reward.

The kids love the cube. They both take giving compliments VERY seriously and they positively color and bloom when we tell them the good things about them. I don't think we often take time to tell our kids why we think they're wonderful, and it's a really nice time to do it.

The first week was astounding. Grace said her goal for the week was "obeying better." We almost fell out of our chairs. She said she realized she felt proud when she obeyed. And through the week we reminded her of her goal, and when she obeyed I asked her how it felt. "I feel proud of myself," and I said that I was proud of her too. She worked hard to get her Chucky E Cheese tokens (we use these as rewards) and it was pretty amazing.

I think generally Luke is a little young for the Family Meeting but we are working hard to include him. We're thinking of giving him coloring to do and maybe doling out M&Ms when he participates to keep him interested.

I really like these meetings because especially for Grace I feel it helps her feel like she is part of the team, instead of being just told over and over what to do. She gets to pick what goal to focus on for the week. And we've noticed she really takes her goal seriously.

I'd love to hear how this might work for your family and if you have suggestions on how to tweak it, we'd love to hear it!

Tuesday, March 15, 2016

Celebrate Recovery

(In case the video isn't showing you can see it here: https://m.youtube.com/watch?v=-sUKoKQlEC4

 "I'm Melissa, I don't have an addiction but I'm dealing with grief."

"Hi Melissa."

I went to my first Celebrate Recovery meeting tonight. It's a Christian 12-step program, primarily intended for addict, both substance and relational, so I didn't think I'd fit. We watched a video, sang a worship song, said the 12 step creed, watched a video testimonial about sobriety, and then the men and women went into separate rooms for small groups.

"I don't know if the twelve steps are going to fit for me but I feel God told me to come. I haven't cried in two years..." and then I was overcome with hysterical crying for a few minutes. God knew the pain was there, I think I knew too, but I didn't know how to get it out. tonight it got out.

I've tried so many times. To cry, that is. I had three cry sessions since Grace was diagnosed. I can remember each one exactly. I was afraid that if I started crying I might never stop. By the time Bailey died I couldn't cry- and I felt terrible, like I was less than a human.

I had worked so hard to be strong for my kids, I was so good at putting on a brave smile, that I lost the ability to feel.

After I was done crying tonight in front of complete strangers I shared about Grace's diagnosis and how the video we watched really spoke to me. I hurt watching the coach push the kid so hard. It seemed so unfair. Why couldn't he be second place? What if he broke his spirit? What if the coach pushed too hard and hurt him? Why wasn't close enough good enough?

I was the football player with a burden to carry blindfolded and God was the coach not letting me rest, not helping lift the load, yelling at me. I felt intimidated by the coach. Then God spoke to me and asked me what would I have lost if I had given up half way through the field. He knew we had to reach the other side. And he was willing to push me to breaking to get there, because we had to get there. I had to get there and God knew it more than I did.

But being that strong has left me broken inside. The journey was painful. And I have not grieved it.

Apparently coming to a group where I can admit I am broken is going to be part of my healing. The prayer and worship will certainly be part. And hysterical crying, I think it will be a big part.

After we got home I was scrolling down Facebook and saw two of our little cancer friend's update. One family grieving. And other's little girl looked so small and sick. These aren't random "like" posts. These are kids we've hugged in the halls at the hospital.

And I hate cancer. I hate cancer. And the tears and the hysteria came out while on Facebook and they assaulted me when I wasn't ready. I hate that cancer can break families hearts. I hate that Bailey died. I hate that it leaves parents powerless. I hate that cancer broke Grace's GI tract. I hate that Luke panics that I'll get lost and not be there for him. I hate it all of it.

Now that the floodgates have been opened I can't stop crying. I don't know what to do with these emotions, I feel overwhelmed by them and out of control. I only know how to stuff them back inside, but I also know that bottling pain is a slow burning fire that is more dangerous than the open flame. I know because I've been at the brink of panic everyday but I can't find the fire to put out.

I don't know what to do with this pain, but I can't try to pretend I don't feel anymore.

 Thanks for letting me share that.

"Thanks for sharing Melissa."

Monday, March 7, 2016

Annie Bosko Sings

The talented Annie Bosko sang her "Fighter" song live at the CHLA Centennial Guild's Bloom conference this last Friday to a slideshow of Grace's journey. I was so touched.
Expect A Miracle from Ventura Weddings on Vimeo.