Friday, February 27, 2015

Identity Crisis

Grace and I are both having identity crises.


"Hi, my name is Grace and I have cancer." That's how she introduces herself these days to everyone at the park. The adults never know what to say. I'd like to say, "actually Grace, your last name is Bumstead, not Cancer," but I haven't directly approached the topic yet. Mostly because I don't know what to say. I'm hoping that over time she will begin to have her identity shaped by being herself and not by life in the hospital.

I am also having a crisis. I didn't realize it, but the symptoms prove it. I'm going to church, but the whole time during worship I'm thinking of other things. I'm finding ways to avoid intimate prayer. The thought of being open before God is terrifying. And it's guilt. I'm avoiding God because the shame I feel around Him is crushing.

I think that in the beginning, when Grace was first diagnosed, I happened to be in that amazing understanding that I knew that my relationship with God was really held in place by His mercy and His faithfulness. My identity was safe being human and God being strong. That was a very safe and tender place to be. I knew it was him carrying me, and I certainly needed it..

Somewhere along the line I decided that I should be perfect. I decided that I had to do a "good job of being a Christian under distress as an example of steadfastness to the masses." I lost sight of the truth that He loves me because He is love. I took my identity out of being His Ragamuffin and instead put it into self righteousness. It was at that same time that life became very scary for Grace and I began to doubt that God had ever loved us at all. The shame and guilt I've felt for doubting Him soon turned into shame and guilt over everything in my life that wasn't perfect.

I know that it's normal to doubt God, and I know He forgives me, but I haven't forgiven myself. It's not just something to forgive. It's my identity itself that needs to be reshaped. I don't think it's something that can be healed overnight. It's not a matter of facts or hearing/saying the "right things" to make me "feel better." It's not reciting Bible verses or knowing the right answers that will heal me.

It's a process of remolding my identity into the truth of who God is and who I am in him. I am going to start waking up before the kids and drink my tea on the porch while wrapped in my fuzzy purple robe. I am going to only focus on the truth that God loves the lost, the broken, the hurting, the doubting, the imperfect. And I will allow myself to be all of those things, because that is who I am.

I know my heart will heal as I realize that God accepts me - the real me- and as I commit to finding and accepting myself. I think that the more I do this, the more I will be able to open up to God. I feel confident it will work, because that was how I first found salvation...and have found it numerous times again since. Except I didn't have a fuzzy robe back then.

And I know Grace will heal too. I'm comfortable with cancer being a part of who she is, because it is, but I hope her identity becomes less and less about the cancer and more and more of just Gracie.


Friday, February 20, 2015

Becoming a regular mom again



I've been in the process of becoming a mom again to two kids, now that we're home more. 

All of my life I've struggled with Illusions of Grandeur...or actually, the pursuit of it. That is to say, I've always needed to be the best. Not that I was, but I had the ever present desire to be important, respected, accomplished, successful...to be a "someone."  Within the last two years God has been telling me that I need to learn what the term "content" means. I had Bible verses about it all over my fridge, trying to heal from my need to be seen as a success. But I wasn't able to change my heart as much as I tried.

Last year that need in me died. In a big way. All of my priorities have shifted and now all I want is to obey God, love my family, and do my share to take care of them in whatever menial way that God sees fit. To have my family together is really what life is about for me. I don't need to be anyone except a mommy.

Though I still hate doing laundry, despise dishes, and dread mopping my floors, I do it with much less grumbling. I've started to see that by obeying God in the small things, and not needing more, I am finally happy. Instead of striving for happiness I've found it in the menial, repetitive, unnoticed tasks of being a mom.

I was thinking today about how God loves the unnoticed. He always picked the most unlikely characters. He never went for the most attractive, or the richest, or the smartest. In fact, I can't think of a single time that God picked the cool guy.

By today's standards even Jesus would be a total failure. He didn't win over crowds (he dispelled them as soon as they were gathered with hard concepts like, "you have to eat God.") He wasn't respected by the religious elite. The Word of God didn't publish a single book in the Bible. The Healer didn't have a respected practice in Beverly Hills. The Light of the World mostly hung out with the sludge of society. Jesus was not successful.

And yet Jesus is everything the Father desires, and his unsuccessful life brought God glory. When we obey God, even when it's totally unnoticed and when it doesn't earn us respect or success, it is exactly what brings the Father glory. And he accepts that as glory, from unremarkable people like us doing unremarkable things like doing the dishes with an attitude of praise.

In becoming unimportant, and by embracing that, I'm happier about being a mom. The interruptions and setbacks (poop in the tub, swallowing legos, sand all over the clean floor) are less of setbacks and are now "part of the territory." So I'm not as cranky at the kids. I'm enjoying them more and trying to escape less. I'm not trying to fast-forward through my days, but best I can, enjoy my family. Not that I always succeed, but it's not about success for me anymore.

Now that I have time to be a mom again, I'm resetting all my attitudes thoughts and starting from scratch. And I am happy.

Thursday, January 29, 2015

Great is thy faithfulness



Last night I had nightmares all night long of being back in the hospital.

Grace had a scratch on her shoulder that had purple veins starting to creep near it. I was very worried it was an infection. I called the 4th floor Oncologist and they had us watch it for the night. By the morning it looked better but I called the Infusion "Fast Track" (like an Oncology Urgent Care at CHLA) and sent them the photos. While we waited for their response I got Grace dressed and emotionally prepped to be poked and to spend the day/potentially night at the hospital instead of going to school.

The threat of infection is still very real for Gracie, even though she is now in maintenance. We know one other family that their daughter caught an infection in maintenance and went into septic shock and spent some time in the PICU fighting for her life. The thought of it had me very scared to say the least.

I felt God so closely during most of our journey, but those last two months when we were in the ER six times and spent weeks with Grace in terrible pain and no answers- remembering that time still wracks me with emotional pain. Why did God allow it? Why didn't he provide answers sooner and spare Grace the misery? Why didn't he take my fears away? How can he love us if he turned his face from us?

This morning I was praying for God to take that pain away and I felt him whisper, "it's ok to be in pain. It will take time to heal, and that is ok." Essentially he was telling me to allow myself to be broken, to not skip the process of healing, and that I am allowed to be close to him even as I'm hurting and grieving and even angry at him.

I've spent all morning trying to wonder how we managed to get through that time and trying to understand if God did abandon us for that small part of our journey.

Then I remembered. Each morning in the hospital I sang,

"Great is thy faithfulness
 Great is thy faithfulness
 Morning by morning new mercies I see
 All I have needed thy hand hath provided
 Great is they faithfulness
 Lord unto me."

Day by day God provided what we needed. It was like manna for the Israelites. There was enough mana for each day. It didn't secure the week, but for that day it provided. If you held onto that day's worth of manna, and didn't get it new the next morning, the old mana spoiled. Every day you had to get "new mercies."

Looking back, I was only seeing and feeling the pain of the entire experience. Now I am reminded that day by day God held us and gave us enough for that day. I now see his constant and sufficient grace for each day. It didn't take the whole away. But he did not leave us.

I am still healing, but for today, his mercies will bring us through.



Monday, January 26, 2015

Cocooning


I've just wanted to say again how much we appreciate all the love and support that you have all given us, and continue to give. I appreciate not only that you leave encouraging comments all over our Facebook page, but also that you continue to leave them even though I don't often reply. I promise you, I read them and am encouraged by them. We have appreciated every call, card, donation, and thoughtfulness that you all have so generously shared with us.

I had supposed that once Grace had hit maintenance that cancer would be a memory we could put behind us and climb right back into our old skin. I was wrong.

Cancer is part of our world now and will always be. Many times the side effects of chemo can show up later in life and we don't know if Grace will have any long term effects. Even now we're still praying for Grace's GI Nueropathy to heal and that it won't be permanent. We also pray that Grace's cancer will never relapse. Yet the threat of it will always be real for us. We will be intentional not to let that shadow cloud over our lives.

But even if Grace never faces cancer again, we also have several little friends who continue to battle. And I don't doubt we'll make more cancer friends after that. I don't think we'll ever leave the cancer world. We just don't know yet how God intends us to be involved.

Another thing that has surprised me is how much I'd feel. I thought since the worst was over that I would naturally be happier. I am happier. But I am also often surprised by the intensity of my emotions and the timing of when when they appear. During church last week, and I don't know what triggered it, but I had a complete memory of being in the hospital. I saw the long white corridors, the locked rooms where BMT kids live, the nurse station, the smell of antiseptics. And it instantly brought up all the emotions I should have felt that day, but was unable to deal with.

I now know that it's actually a normal response. My therapist taught me that I should expect these sporadic emotions to be somewhat normal this year. Last year was an exercise is staying calm, brave, and numb. This year I will relive last year, especially on anniversary dates, but unlike last year, I now have the time and ability to feel. That is both a relief and a terrifying thought at the same time.

Grace has also been dealing with her experience. She has nightmares about monsters with needles and is asking more questions about what happened.

We've also found out that we can never go back to who we were before. We've been stretched and have grown in so many ways that we don't want to go back. Yet we keep trying. We booked up every available second to catch up with friends, family, errands...only for Grace to be nuetropenic, and we then canceled everything. We realized that this year we will have one foot in "normal" and one foot in "cancer," and that is still a lot to deal with. We also realized that our lives were too busy before and that we want more margin in our lives.

This year we will cocoon. It's like a family huddle. We will continue to focus on each other and keep close together to keep out dangers. In a lot of ways it'll seem like we should be ready to "move on," but inside the cocoon there's a lot of growing and healing happening that might not be noticeable from the outside. If we continue to seem absentminded, unsociable, or even stressed, please know that we're still cocooning. And it's a process that needs to happen so that we can heal.

And through the process of cocooning we're also doing "normalish" things. Overdue things. Like finally potty training my three year old son. (Just as a side note, pee on the wall can strip the paint. Just found that out a minute ago.) Grace is relearning how to play with her brother and with kids her age again. We're learning to ignore bruises again as she is actively dancing and jumping and living again. Not that they don't stop my heart every time I see one, because they do. But we're learning. And healing. And happy.



Tuesday, January 20, 2015

An Open Letter to Mothers Who Don't Vaccinate

 


Dear Moms who do not vaccinate your children,

You and I have more in common than you might think. My children are my sun and moon. I know you love your children extravagantly too.  Like me, I believe you would go to any extreme if it could ensure your child a long and safe life. I feel the exact same. Yet on the issue of vaccines, we differ.

I would vaccinate my children if I could. My daughter Grace is currently unvaccinated because I am not given the choice. Grace was diagnosed with a rare form of Leukemia a few weeks after her fourth birthday. It was the day time stood still for my family and me. Because of her cancer she is the most susceptible to catching diseases, the most likely to die from them, yet she is not allowed to have vaccines to prevent them. The irony of the situation is not lost on me. 

Before cancer became a member of our family I was on the fence about vaccines. I have never seen a case of polio or measles but I have seen plenty of children with autism. I was hesitant to trust “traditional medicine” but I was very comfortable using herbal and homeopathic remedies. I even grew our own organic vegetables. It just seemed the claims against vaccines were so accusatory, so loud, so confident. Everyone had an opinion. I didn't know who to trust.

When cancer hit we researched every kind of treatment for Grace. My husband and I decided we would use whatever worked, traditional or alternative, as long as it had documented proof of working consistently. Grace had a 20% chance of survival and we were willing to do whatever it took to get her a cure. We researched herbal remedies, including marijuana. We researched juicing, vitamins, raw foods, cooked foods, essential oils, you name it…no one could prove they consistently cured children of cancer. But chemotherapy did. Dreaded chemotherapy, the treatment we both hate and love, became our answer. It would bring Grace’s survival rate up to 80%. That was the day we decided to start trusting traditional medicine.

But it wasn't just medicine I didn't trust. I thought doctors were “in it for the money” and that they skewed research results in order to get funding from pharmaceutical companies. Now we had to trust doctors for the life of our daughter. Because of cancer we got to know our medical team very intimately. We spent over one hundred days living at Children’s Hospital Los Angeles (not to mention the days we spent there for outpatient treatment). I can’t speak for all doctors, but the doctors and nurses who work at children’s hospitals are there for the kids. Nothing else. They work tirelessly with cranky kids, exhausted parents, and with dying children that the doctors know they shouldn't get emotionally attached to, but they do anyways. Because they love kids.

And after they finished taking care of my daughter for the day, they went home and took care of their own children. They went from being our medical team to family. I found that everything that was said about them was wrong. I discovered that doctors recommend certain medicines for a reason. It’s because they want children to have the best chance at survival and to have healthy and happy lives. They don’t have a hidden agenda. They don’t rely on wishful thinking or hopeful remedies. They use what works. I wouldn't trust doctors to save my life. I trust them even more than that. I daily trust them to save my daughter’s life.

I wouldn't wish what we've gone through on my worst enemy. We saw our daughter too sick to eat, too weak to play, too tired to smile. We spent sleepless nights wondering if we would hear our beautiful daughter’s laugh in the morning. There is no pain like seeing your child suffer while fighting for their life.

Actually…there is one pain worse, and that’s only the anguish of finding out that you could have prevented it. I know I did everything to prevent my daughter from getting cancer and cancer still found her.  I would give anything to have my daughter vaccinated today. I would do anything to spare her from disease.

There are vaccines for your child. You can protect them from having to fight for their lives against life threatening diseases. These diseases are monsters. They steal life from even the bravest and strongest of children.  Please don’t risk your child’s life. You can do what I can’t. You can vaccinate and save your child from suffering or even death.

From one mom to another, if you have the chance to save your child from a life threatening disease, please, please, from the bottom of my heart, please…vaccinate your child.

Very sincerely,
Melissa Bumstead, aka Gracie’s Mommy
Read more about Gracie here: www.TeamGraceEllen.com

Friday, January 16, 2015

Children's Hospital Los Angeles "Imagine Special"

You can watch Grace's interview on the Emmy Award Winning special, "Imagine" on youtube. We were so glad to be part of this amazing show that highlighted the amazing things that Children's Hospital Los Angeles is doing for pediatric patients.

Wednesday, January 14, 2015

Death and Dying


"I'm scared of my toy dying," Grace said the other day while playing with a doll, "just like you were scared of me dying."

That pretty much felt like a punch in the stomach. In times like this I do the S.O.S. prayer. I don't have more time than to pray "save my ship" and get into solving the problem. Thankfully we've been over this topic a few times before, though none so direct. Thankfully God always hears this prayer and gives wisdom "generously to all without finding fault..." James 1:15

I don't want Gracie to be afraid of dying. Death is the reality for all of us and if it comes to Gracie tomorrow or in one-hundred years, I want her to be ready for it. We've let her know that some kids aren't able to beat their cancer. She knows that some kids will die, and have died, from cancer.

It's not to scare her. But I've heard of stories where cancer kids went from sick to actually dying in a sometimes short time. It's not common, but when an infection hits, these kids are literally fighting for their lives. Even the bravest and the strongest may not win their battle. God forbid Grace would die from an infection rapidly taking over her body, but if it did, I wouldn't want the concept of dying be something that we only had an hour to introduce, especially if I were to be near hysterics. Not that we wouldn't encourage her to fight her infection...

Also, I believe that kids are smarter than they let on. They can tell if we're hiding a concept. They also know that if we hide it, then it must be very scary indeed. If death becomes the unmentionable fear, then everyday life would be terrifying once the dots are connected from cancer to death. She would figure it out sooner or later. We didn't want that for Grace.

So I took a deep breath.

"We all die Gracie. Everyone. There were a few times I was worried that you might die," I said, "but I wasn't too scared," I said truthfully.

"Why?" she asked.

"Why? But because of Jesus we have a place called heaven where we won't die anymore. And there's no cancer or pain there. And I know that if you died that Jesus would take care of you and love you. We would be together again there."

In the past Grace has wondered if her toys would be there. I told her they would be. I figure heaven is a place where all our needs are met, so toys would be appropriate. She's also glad to know our two cats Dash and Alex will be there. Heaven isn't a vague, scary, unknown. It's a place very similar to home.

Since that day none of Grace's other toys have died. They go to the hospital often, but they're always healed once Dr. Grace tends to them. And I'm so thankful she's not afraid of dying because only then can you really enjoy living.


I wrote this about death the other day. It's a little wordy, but here it goes:

The process of leaving our mother's wombs is a frightening and painful experience. The transition is abrupt and unexpected. It is a process that leaves us cold, vulnerable, and weak. Yet our pain and effort is small compared to the labor of our mothers who did for us what we could never do for ourselves.

If we had the capacity to remember that day I think we would be deeply traumatized. We would be terrified that perhaps we would be suddenly expelled from this world into another unknown life. And of course, the fear of death is exactly that.

As I daily walk towards that time that I should die I will remember that it is natural that death should be similar to birth. Death is also a relatively short, often painful transition that brings us to life. Eternal life, that is. Yet our suffering and effort is small compared to the painful labors of our Savior Jesus. He did for us what we could never do for ourselves.

When we die and are birthed into heaven, I don't think we will be grieved by the experience. I don't think we'll have any residual trauma. It is likely we will even celebrate that day as our true birthday. For that will be the day we came into the fullness of life.

"Just as Jesus was raised as the first of the harvest, then all who belong to Christ will be raised when he comes back." 1 Cor 15:23