The “In Between”

The season I find myself in is so….different. I know–life is made up of transitions. You go from one season to the next, from one grade to another, and so on.What I am finding difficult to navigate currently….is the in between place.

I see pictures of “first day of school.” And rightful celebrations of kids moving from junior high to high school, or from elementary school to junior high. And for a minute, I panic, thinking I’ve done everything wrong because as a homeschooling family, we don’t always tidy up finish lines and beginning lines with a neat little bow or a ceremony.

I am frequently caught totally off guard by a child who declares with joy and pride, “I finished my math!” And then I have to scramble to see if I have “what’s next” on hand, or if I need to order something. And because we don’t follow the same school schedule, I find that we “start” a new school year at all the “wrong” times.☺️That’s part of the beauty of our homeschooling adventure-I don’t have to work within the rigidity of anyone else’s guidelines, I can just let them work at the pace their hearts’ desire! But one of the downsides is that not all of their accomplishments are celebrated in the same way. My big two kids didn’t do a “graduation” from junior high into high school….mostly because we were plugging away, Elijah was diagnosed with cancer, and when our heads stopped swirling for a minute at some point this year, we realized the big two were already well into their high school requirements and had gained a lot of important life experience in the process. I just didn’t realize that they were ready for a “graduation” of some sort until the time had already passed. It’s not all bad. It just leaves you with a sort of in-between feeling.

And, we are “in between” in the church department. We were very involved at our previous church, but with a child with cancer, a church outside our community, and a husband who works every other weekend, it just wasn’t going to work for this season. We’ve had some neat opportunities at various churches in the valley, but our bottom line is that Elijah still has to be well to go under anesthesia…and so we can’t risk having him in a class with other children (most of the time). Which means, we are just kind of in-between.

 

And Elijah. He has had no new growth for the last 6 months or so! This is amazing and so encouraging!!!! But he is still at 10 weeks in between “surgery”, or exams under anesthesia. So, we aren’t quite in the thick of it as we were, but we aren’t free of it either. We are just kind of…..you guessed it. In between.

 

And our house…..we are bursting at the seams, but we can’t afford what would be a good fit for our family in this area. Do we move to Waco, Texas, where the Fixer Uppers are?😂😂😂😂😂. Or do we stay in our bursting our seams state and try to make better use of our space?

All this to say….sometimes the in between place is hard to navigate. Sometimes you long for a heavenly home, where aches and pains don’t follow every breath, and bills don’t seem to crash over you, and doctors appointments don’t dictate your schedule, and “pokies” aren’t part of your two year old’s familiar existence.

And yet even in that heavenly longing, you still marvel at how these once tiny ones are growing into amazing, wonderful people who have their own ideas and opinions and interests. Even as I long for sleep and for my mind to think clearly, I still feel my breath catch in my chest and my heart beat with joy as I get a middle-of-the-night arm flung across me or stuck under me.

I don’t get to know how many days Elijah has. I don’t get to know how many days any of my children have, or how many I have myself. I only know that I have a today to live, and a heavenly future to hope for with certainty.

I don’t get to know how long it will be until we will be really involved at a church again. I only know that there are people to love in my community right now, and I can love them even while I’m in the in between place.

It’s like this picture. Swings make me sick to my stomach. And this park is right across the street from Sloan Kettering, the hospital where Elijah receives treatment. The in between place can kind of beckon to you, to stand there and notice everything wrong with the place you’re in, or let you give all your excuses for not stepping into the joy and potential of the moment, even with all its imperfections. But that wouldn’t be very fun at all. So I got on the swing.

Honestly, I don’t think I’m doing my best here, in the in between place. I long to live with the kind of passion and fire that has always marked my existence, but on most days, I feel more like I’m surviving. I go back and forth between wanting to solve the health mysteries that plague me….and just wanting to ignore them to the best of my ability. I long to make sense of things, here in this in between place. More than anything, I want to experience the nearness of God in this place.

But at the end of the day, no matter what *place* I find myself in, He is here. He is worth the battle. And I know I have today. So Lord, give me the grace and the strength and the courage to love well in this place, until I’m in the next one.🙏🏻❤️ Even when the swing makes me sick and I don’t like where it is….help me to get on and enjoy the ride anyway.

“The heavens proclaim the glory of God.

    The skies display his craftsmanship.

Day after day they continue to speak;

  night after night they make him known…

The instructions of the Lord are perfect,

    reviving the soul.

The decrees of the Lord are trustworthy,

    making wise the simple.

The commandments of the Lord are right,

    bringing joy to the heart.

The commands of the Lord are clear,

    giving insight for living.

Reverence for the Lord is pure,

    lasting forever.

The laws of the Lord are true;

    each one is fair.

They are more desirable than gold,

    even the finest gold.

They are sweeter than honey,

    even honey dripping from the comb.

They are a warning to your servant,

    a great reward for those who obey them…

May the words of my mouth

    and the meditation of my heart

be pleasing to you,

    O Lord, my rock and my redeemer.”

Psalm 19:1-2, 7-11, 14

Yesterday’s Recap….

It was a really nice day. My favorite thing was this:

Getting to the see the city through her “lens”-what makes Emma stop and take a picture? She has a lovely eye for details and found architectural items worthy of photos. That was fun.


He seems like such a giant!!!!!


We started out the morning by finding some green.😂😍

We admired and remembered the many who have fought for our freedom and our unity–because we NEED each other. ❤️❤️

That’s one thing that I love and miss about being at the RMH-you meet so many other families, you hear of their journey, your heart breaks, and you remember that we all need each other.


We took in the beauty of Central Park….


And hung out with Shakespeare😂😂😂

Saw “Tavern on the Green” and had a lovely discussion about Mr. Popper’s Penguins.


Caught the subway right near Juilliard….


Went to the plaza…


So Emma could have her ham and gruyere crepe.❤️😋
I couldn’t find any food just then, but we were able to get a chiropractor appointment:

After which I was able to find……you guessed it! A salad with chicken.😂😂😂😂😂😂😂😂

Went to Bloomingdale’s for the first time and tried on some shoes….

Saw a cupcake ATM!!!! Decided we should check out Sprinkles cupcakes…..they *happened* to have GF options.☺️. And yes, it was a little bit mean that Emma and I had cupcakes while Elijah was asleep in the stroller…..but, we will make it up to him later.☺️


I took Emma by a cathedral that Ben and I had stopped at, one of the times Elijah had to have chemo. We both agreed that it felt like a holy place…..and that the beauty and magnificence of the place somehow helped remind you how small you are, how big He is, and yet He loves us still!


It was a really great day in the city. But we were wiped out!!! They had dinner at the RMH, which was lovely and gave us opportunity to meet some lovely families.

Early morning!

I missed all our stories from yesterday-I hope to share about them later today. But I knew the big news people would be waiting for would be how Elijah is doing!

We had an early morning-6:30am check in, so our beloved bakery wasn't open yet. After we got Elijah all checked in, I sent my darling Emma over to the bakery to grab our green juice and GF banana-chocolate chip bread.😋

Yes. I sent my 14 year old daughter on the streets of NY by herself. It was only a block (ish) away. And I had her text me when she was on her way back to me. She did a great job! And it was a big help.

Two pokes today. They tried for the arm, and once I saw that it wasn't going to work, I spoke up. So. On the second poke (this time in the hand), he was good to go.


He had some time to play before it was time to head back. Once they pushed the meds, he fell asleep in my arms.

I felt good. Not too worried or concerned. My sweet daughter was looking for Scripture for her watercolor paintings, and she needed verses with the word "peace."

I recalled two that I had tucked away in my memory:

"Peace I give to you, my peace I leave with you…" Jesus, in John 14:27

And:

"You will keep him in perfect peace, he whose mind is steadfast, because he trusts in you." Isaiah 26:3

I said these verses out loud, and then set about writing on the thank you card for the doctor and staff. I noticed as I did, my hand trembled.

Wait. I'm not nervous. Why am I shaking?
Well. It's really early, I've had no food, and I just laid my baby down and am waiting to hear if there is detectable cancer in his body…..

I don't feel nervous, per se, but as a dear friend of mine once said, "My body betrays me."

So I thank the Lord for the perfect peace that comes even when my hand hasn't quite gotten the message.

We wait.

The doctor comes in and says everything looks great! The two things we are looking for are:
1. New tumors-the chances of new tumors developing keep going down the more time passes
2. Old tumors regrowing-we are at about a 10% reoccurrence chance (and we've already done that once!), but the closer we get to the year mark, the more those chances go down even more.

We come back in 10 weeks! This happens to fall on "the birthday week" in October, which encompasses both Ezra and Noah's birthdays. But I think we can work with it. All in all, we are rejoicing with this good news and now we are just waiting for him to wake up from anesthesia. His green juice is waiting for him.💕💕💕💕💕. And so are we.

We made it!

This is Emma and I at about 3am when we left the house:

Back in the old neighborhood by RMH!🎉


I found a great pizza place here in NY that does Gluten free crust or Whole wheat crust-but it's closer to the Bentley. This is neither of those, but it's just around the corner from the RMH.☺️. We were all hungry! But since I couldn't have this….

Shocker! Salad with chicken! AND, sweet potatoes, apples, brown rice…..it was delish!

They were doing jewelry making and had some really nice quality beads. So my darling girl sat down and got creative and gained a new friend-a sweet, 10 year old boy in a wheelchair was enjoying her company.

Elijah at the playroom!☺️

It was Elijah's BEST FLIGHT EVER!!!!! Thank you so much for your prayers! And a nice attendant for JetBlue even carried the car seat on the plane for me without me even asking!!!❤️🙌🏻🙌🏻🙌🏻🙌🏻🙌🏻

Ready! (Or Not….)

I spent the morning running errands in preparation for our trip….last minute travel size items at Target and snacks from Trader Joe's.

I was just about to start packing when I hit my first afternoon crash. So, I took a short power nap which took me a good hour and a bowl of granola to recover from.

We had a lovely "breakfast feast" for dinner, thanks to Ben. Waffles, goat cheese eggs, and yummy melon.😋. A friend shared with us a gluten-free waffle recipe that has pretty much changed my life and has been such a treat in this season where there are so many things I can't eat that sit well with me.

Anyhow! On to packing! It's different this time. Sharing a suitcase with a baby is different than sharing a suitcase with a 2 and 1/2 year old.☺️. I have my old standbys-I wear the same things every trip people! But I decided to change it up this time (we'll see how that goes!😂). Mostly because it is forecasted to be quite warm and humid.

I'm packed and ready to go. Well, I think I'm ready. But ready or not, we leave the house in just over 5 hours! I asked the kids at dinner tonight how they were feeling, and pretty much everyone was feeling good because they said they are used to it now. That both broke my heart and gave me courage at the same time.

As I lay my head down, I want to fill my head with thankfuls. ☺️. There are many, so I'll just share a few.

I'm so thankful Ben is off and will be home with the kiddos.
I'm thankful that even though our van kinda pooped out this week😳😔, we are able to borrow my mom's car to get down to the airport tomorrow.
I'm thankful for the amazing doctors and hospital that provide treatment and have taken great care of Elijah✈️🏙🗽
I'm so thankful to have Emma with me this time-I know she will be a big help, and she will make sure that we eat.😂
I'm thankful that God is so big; He can watch over everyone here in Ojai, all the pieces of my heart that I love so dearly, and yet He still goes with us whether we are "ready" or not!❤️❤️❤️🙌🏻🙌🏻🙌🏻

Tender Projects…

This is a picture of our dining room table (from Easter). I like the table quite well as far as style goes, but we were having some problems due to its fit in the space, as well as the sharp corners.

Because Elijah is missing his right eye, he would often hit that side of his face on the sharp edge because there just wasn't enough space for him to navigate around it. Well, also, he can't see on that side of his body.

Since my heart broke a little bit each time this happened, I decided to take the leaf out of the table, to give some more clearance space around the edges. This seemed to help Elijah quite a bit, but it meant that our family didn't fit around the table. Someone would have to squeeze in at one of the corners and it wasn't a highly coveted place to be.☺️

I like the rectangle shape of a table very well, and I had lovely and thought-provoking discussions with various ones in our home concerning the need to let Elijah learn, at times the "hard way", how to navigate this life with only one eye. I did, however, decide that at two years of age, the corner of the table into his face did not need to be part of that learning.

Imagine my pleasure, when at a garage sale in town, I noticed a gateleg table that seemed to have three legs very close together. I also noticed four leaves leaning close by. I asked about it, and no one seemed to know if the leaves went to the table, or if the table opened up at all.

It did.☺️❤️

Those close to me will notice right away what drew me to this beauty:
Rounded corners.

And not only that, at a great price, it was a perfect opportunity to practice chalk paint and distressing. Really, it was a good opportunity to rub my heart and soul into something and for my kids to see me creating something for our family.

And not only are the corners rounded….not only it is more narrow, therefore giving more clearance to maneuver around it, but it seats all nine of us.☺️

There's still some work to be done-including adding some latches to keep the leaves tightly connected….adding some front apron to it, and sanding/staining the top so that it is all one color rather than a few.☺️

But overall, this was a fun project that gave me an outlet to work and process life while creating. It was tender, because I knew I was providing something for our family, and taking care of my little guy. And it was made all the more special by a thoughtful gift from a friend:

Bon appétit.

Long Time…..

It's been a long time since I have posted! Part of that is because we have been fighting illness as a family….part of that is because I have had my own personal health issues to struggle through….and part of that is because I have had no words.

I haven't been on social media either. Half of my friends are walking through childhood cancer, and the other half are living "normal" lives in the middle of the summer. I have felt a lot like we have one foot in each world.

But the most beautiful explanation of this different season I find myself in, came as I was trying to purge our kitchen cabinets.

You see, our family of 9 is really bursting at the seams in our sweet little home. We have been praying for God to "expand our borders" in a very literal sense.😂. In the meantime, while we wait for God to work on our behalf, I need to work creatively to use our space so that we can function well. And that means having less stuff.

I look at my kitchen cabinets, full of many unused items, and I begin to go through in my mind thinking, "What can I get rid of?"

The difficulty comes, as I told Ben, with the season that we are in. Let's be real, folks….we use paper plates and paper bowls for many of our meals. And yes, I know that I'm killing the environment and all, but two and a half years ago our whole life was turned upside down and we had to keep going. So, with my back about to give out if I stand too long at the sink, and with a husband working 16 hour night shifts to make ends meet, we made a decision to use paper products, which has enabled us to keep going. (Not to mention that between Ben, myself, and the bigger kids, a load of dishes still gets done everyday even WITH the use of paper products!)

As I looked through our cabinets, I came across lovely tea plates and cups….and my mind ventured back to days where "school" was just as much tea party as it was reading and workbooks. I recalled the days of having friends over and setting the table with veggies and hummus and muffins I would make full of healthy, yummy goodness….and my heart ached.

Do I let go of these things that I am not using? Or do I keep living with the hope that my life will be "normal" again?

Does life ever get back to "normal" after childhood cancer?

But I realized, that childhood cancer or not, I'm really asking the same question every believer is:

"How do I live with one foot in today and one foot in tomorrow?"

This IS our new normal. And next month, a new factor will enter that will change our normal and make it into something different yet again.

I'm not sure I answered the deep questions or rumblings within me, but I just tried to do the next right thing I knew to do. I don't need all the dishes that were in my cabinet. There were many things that just needed to go. Our breakfast burritos were served on 1/2 a sheet of paper towel this morning. But I kept the tea cups and saucers that bring back sweet memories of a different season.

I breathe in deep, those precious moments where the type of tea was more important than letters and numbers (in many ways, it is still more important in our house😜). I breathe in deep, the grace of today–both the delightful and the difficult. I revel in the special blessing of dropping off teenagers to help at a church in town, and come home to little ones playing train tracks. I stick down a new piece of contact paper in the cupboard and feel the accomplishment of seeing something new, something fresh, and something promising on which to set the same dishes down upon. I think ahead, to the days when we will return to the "real" dishes for every meal. And I smile thinking, "Maybe tomorrow, I'll have a tea party."

And in that, I remember the special joys I have had in each season of mothering and schooling these children. I think about the difficulties in the last two years, and I realize that there were many difficult things before that-this was just a different kind of difficult. A week from today, we are getting on a plane again. We are going to New York again. Elijah gets a poke again. Anesthesia again. But also, I'll see faces that brighten my day, and places that have become familiar.

Those difficult things, they haven't changed. They haven't even really become easier over time-if anything, they are a little more weighty as time goes on. But the difficult, when laid down on *new contact paper*, that is, when recalled with the backdrop of eternity and heaven in mind, well, they call me forward, to a time where even the grandest and fondest memories in my mind will only pale in comparison to the glorious future ahead, in the presence of the Good King, where there will be no more cancer or death or loss or grief. And that….that is worth stopping and having a tea party for. That is the "new normal" I have to look forward to.

Yep. Lord willing, these dishes will see constant, consistent use once again. But doesn't the new contact paper just change the whole look of everything? Doesn't it almost make you WANT to use one of those lovey white dishes today, even if you do have to wash it?☺️

"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light and momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."

2 Corinthians 4:16-18

Oh Lord, would you give me "new contact paper" on which to set my dishes? Give me a new perspective for today by reminding me of what my *tomorrow* holds one day in Your presence. Oh! And will you help me to stop, and enjoy a cup of tea while I wait?☺️❤️❤️❤️❤️