Fire, Decisions, and What Matters Most

Well. This is what our neighborhood looked like on Tuesday morning at 9am. The pictures don’t even really do it justice because we could see the flames coming over the ridge behind us.

Our power had been out the night before, and it made us realize how really unprepared we were for a true emergency situation. We also realized that what would take the average family a few minutes would take us much longer. And, we thought about how difficult it can be to get in and out of our little valley and decided this was a good time to go.

We had each kid grab their pajamas and underwear. We grabbed our Mac computer that has many of my pictures on it. And, we grabbed the medical bin with our important documents and Elijah’s medical records. And we left.

We headed to my mom’s house first and this is what we saw.

We decided it was really time for her to go too.

Then we stopped by my brother’s house, which is close by, and this is what we saw:

So, we decided it was time for them to go too. It took us a good 30 minutes just to get out of town because so many others were doing the same☺️

But we safely made it to Carpinteria, where we met up with my dad who had gone to work in the morning.

All together, we headed to Pismo where we spent last night and will spend tonight. We will wait to see what the wind brings tonight and tomorrow, and then make decisions about what is next.

We are praying for so many that we love and the valley that is our home.

But we do so with such thankful and grateful hearts.

Um, we only took up about a quarter of the In N Out.😂 Sweet rest to calm the soul.❤️

These kids! They are amazing! Morning walk on the beach. AKA: therapy session for all. Moments to breathe in grace and beauty.

Fun to explore.

And now we wait!🙏🏻🙏🏻🙏🏻🙏🏻❤️

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Celebrating!

Elijah’s MRI was clear, except for one spot which we *hope* is calcified tumor. It’s one of those things where no one can really say if there are live cells remaining.

Prior to his last regrowth, he went about six months with no new tumors and no regrowth. And then, one of those stubborn tumors just started growing again.

So, the longer he goes being stable, the less likely it is that the tumor will regrow.

This is just the reality of cancer. It is unpredictable and impartial.

We choose to celebrate the victory and enjoy today.💕. Thank you all for your prayers!

Prayers and process….

We would love your prayers this morning as we head to CHLA for Elijah’s MRI and oncology meeting. He has been getting over a slight cold, so it will be up to the anesthesiologist as to whether they go ahead with the procedure today or not.

Also, I want to apologize if I worried anyone (especially my mom!😉) with my last post. The truth is that there are really good weeks and some that are more difficult. The week before I went to NY was a particularly difficult week, and my post was just….the processing. It’s hard sometimes, to be vulnerable and to say when things are raw and painful. But at the same time, I want to say what I’m processing because I am not the only one hurting. So many around me are dealing with difficult situations and painful ailments, and if we are truly going to be authentic and find our way to healing, then we have to be honest.

So. I’m okay. Really. But some days are really, really hard and I think all of us can relate to that. We need each other if we are to keep going. And also, I think within Christian culture, there’s a tendency to want to hide our true emotions, rather than allowing the facts that God is absolutely good and that life can be very difficult and painful to coexist. Both of those things are SO true. The goodness of my God is not altered by my experience of difficulty–in fact, it is enhanced as I see that in Christ, my God suffered for me and sympathizes with me.

God is good.

Pain is real.

But it is not the final word. The final word for me in Christ will be life-the fullness and abundance of it, in its most beautiful, perfect state. Free from sorrow and grief.

So thank you. For reading my real and honest. And for standing beside us and praying us through.❤️

Further in….

The dictionary defines trauma as:

A deeply distressing or disturbing experience.

The problem is, you don’t always know that what you are experiencing is traumatic, because in the moment, you are too busy experiencing it. You just keep putting one foot in front of the other, doing your best to keep up with the demands and responsibilities, until one day it all catches up to you and you think:

When did it start being so overwhelming to get dressed?

When did I stop loving so many of the things that made me me?

When did I stop living and start to just exist each day?

It’s like, you wake up from the fog of trudging on through a difficult season, and you realize that there was a lot more damage than you noticed at first. In fact, the damage affected so many areas, so many little hearts, so many details that you’re not even sure where to start with the clean-up and healing.

When I attended the One RB World Conference in Washington D.C., I was shocked at the tears that sprang to my face in the first ten minutes. As I listened to stories of survivors talk about their mothers who took them back and forth across the country for treatment, my breath caught in my chest….and it hurt.

You see, I frequently tell our story and so I’m used to it. There’s a rhythm to it, and I have learned to anticipate many of the questions I get so often:

  • What’s the prognosis?
  • Why do you go to NY for treatment?
  • How’s he doing?

But what I could not be prepared for, was hearing someone else tell the story of what I have lived the last two years. It’s only then that my heart breaks with sympathy and understanding for the sheer exhaustion of all personal, natural resources in a situation like childhood cancer (or many other situations like it). I hear the pain, and the worry, the depletion of finances, the toll on the family, and the relentless hearts of moms and dads who have fought insurance battles, treatment decision battles, personal battles, all while trying to “keep it together” and save their child’s life.

It wasn’t until I heard it from someone else, that I understood why I am so exhausted all the time.

We made the decision for Ben to stay home from New York because we didn’t feel like we should both be gone on Noah’s birthday-especially since we were both gone last year on his special day. Caleb, recalling his 11th birthday, which both mom and dad missed because we were in New York said succinctly, “Yeah, that was awful.”

Especially this last year, I have had so many physical ailments that I have just become weary of being in (almost) constant pain. Tests and doctors have revealed very little and so you’re left wondering, “Are they just missing it? Or is this really all just *stress*?”And quite honestly, that part of it all is still a mystery. If it is all just stress, then I feel like we need to make some major life changes!!!! But what, exactly, would those be? We need Ben to work night shift so we can keep paying our bills. Whether there is something wrong that they just haven’t found yet, or whether it really is stress that is wrecking havoc in me…. I have to remember that my God is the God who heals. Even trauma, in His hands, is molded and fashioned into something useful-not that it doesn’t hurt. But it doesn’t hurt without purpose. (Grant it, it may be a purpose that I don’t understand or can’t see).They say that when you lose a limb, you can experience phantom pains where the limb used to be….your nerve endings are angry and aggravated that their signals have nowhere to go. Well. I’m looking around. I’m assessing the damage. And the best I can do today is to make sure the signals have somewhere to go. I can’t guarantee that there won’t be pain–in fact, I can guarantee there will be. I just need to make sure that the signals aren’t ignored. That they are heard, that they are understood to the best of my ability, and that I get help. I must bring all the pain I find–whether it is missed birthdays, endless amounts of “pokies”, or my own weariness–to the throne of God’s grace. I must let the tears fall, and feel the ache in my chest, and I even have to just have days where the exhaustion of getting up and dressed is just too much.The dictionary defines healing as:

The process of making or becoming sound or healthy again.

So this is my heart’s prayer for our family. That this season would be the season where healing begins. Romans Chapter 8 was so encouraging this morning as we read it as a family:“…letting the Spirit control your mind leads to life and peace…You are controlled by the Spirit if you have the Spirit of God living in you…For all who are led by the Spirit of God are children of God.

So you have not received a spirit that makes you fearful slaves. Instead, you received God’s Spirit when he adopted you as his own children…For his Spirit joins with our spirit to affirm that we are God’s children. And since we are his children, we are his heirs. In fact, together with Christ we are heirs of God’s glory. But if we are to share his glory, we must also share his suffering.

Yet what we suffer now is nothing compared to the glory he will reveal to us later.

The trauma is real. It is painful and difficult. But the healing, when it is complete, will so far outshine the trauma that it will swallow it up by life and peace.

The healing may not be complete until heaven, but as the Spirit gives life within me, I will walk further and further into that healing until it is all I know.

As the kids and I were praying the other day, I saw a picture of myself, standing, watching the waves come straight for me. I felt that feeling: I’m barely keeping my head up right now, I am not going to make it if more waves come. And then I saw myself, stretch out my arms and fall backwards into the water. I heard the verse in my mind:

“Deep calls to deep at the roar of your waterfalls; all your breakers and your waves have gone over me.”

Psalm 42:7

I remember when I was first mothering quite a few and they were all little. There would be moments where I would feel overwhelmed by the constant needs, the loud noises, the endless need for correction. I would feel this feeling, like the waves were coming and I wasn’t going to make it.

I remembered that I would always hear a whisper: “Go further in.”

Get down on the floor and play cars. Read a story. Get out and take a walk.

So, when I told the story to Ben about the waves coming, and hearing the verse about all God’s waves having gone over me, he reminded me of something about waves.

When you feel tossed about in every direction, and you feel like you aren’t going to make it…..if you fight the wave, you become more panicked and you lose air more quickly. But if you just let the wave take you wherever it is going, you conserve energy and you are often able to come up for a short breath of air.

And so, while I have felt much like I am being tossed about by a wave, with no clear idea exactly where the wave is headed….

I’m going to stop fighting the wave.

I’m going further in.

And maybe I’ll even find that healing occurs along the way.

Maybe I’ll even learn to swim again.

On our way, Noah!

My sweet Noah Benjamin,

You are such a tender-hearted young man. You are so compassionate, and you faithfully pray for those around you. I am so proud of the ways you have grown and matured. It came at a difficult cost, however.

Last year, you had both Mommy and Daddy gone for your 10th birthday. So this year, you faced the possibility of us both being gone again with great courage. We decided, however that it was best for at least one of us to be home for your birthday. So, Daddy will be there when you wake up this morning. And you will have a special letter from me. But I want you to know: we are on our way!! You’ll wake up early and pile in the van and drive down to the airport, and I’ll rush to greet you because you are so very special to me and I can’t wait to hug you!

Everyone in the family agrees that you are very helpful with the younger kids. I love how nurturing and thoughtful you are with them!!!

You surprised me this past year with your math. You handled it with such maturity and diligence, and even finished before I expected because you were so faithful. You have also been so faithful with your bible reading in the morning, and I have been absolutely blown away by some of the things you have prayed as we have been praying through the Scripture we read.

You are one of the most loving humans I know, and I’m so glad I get to be your momma. One of my greatest prayers for you is that you would always, always know how loved and special you are. You created by God to spread His love and creativity in the world, and I can’t wait to see how God does that through you. Happy birthday, Noah! I’m on my way to celebrate you! And if Mommy and Emma look a little tired, it’s because we only got a couple hours of sleep.☺️

All my love,

Mommy

Great news!

Elijah is still all clear! No new tumors and all the old tumors are scars. We are rejoicing in this great news and we will be back in 3 months!!

Elijah only had to have one poke today so we are very thankful for that as well.

We had an amazing feast with our friend Margaret last night! And Elijah had so much fun playing cars and airplanes at Margaret’s house!

Both Emma and I were pretty wiped out from the long day of travel yesterday, so we were anxious to get back to RMH and rest. Elijah seems to have other plans😂😂

But overall, we are so thankful that Elijah is still showing no evidence of disease!🙌🏻