Ezra Lucas Knight…

My sweet boy,

In the morning, you will be 9 years old! I can hardly believe that 9 years have passed since you made your unexpected entrance into the world here at home. It is an understatement to say that you have changed everything! Since your unplanned home birth, the following three have been born at home too.

This morning, we all went around our celebration breakfast table and said some of the things we love and/or appreciate about you. I said I love that you are both tough and tender. You have a bold and courageous spirit, often charging ahead into things that I’m not totally sure you can do….and then you prove me wrong. Most of the time.😉. You have accompanied me on countless trips to LA and you have been the gentleman, opening doors, helping with Elijah, and just being a great companion. When I take you with me grocery shopping, you lift all the heavy things for me-even those things that I’m not sure you should be able to lift.☺️. But you are also tender. You come and snuggle with me, and anytime you are excited about something, you have the most brilliant sparkle in your sky blue eyes. That sparkle is like all the world’s excitement, and all the world’s mischief all rolled into your eyes and your smile.

This year, I pray that you will continue to grow in maturity and wisdom, and my heart’s prayer for you has always been that you would love the light. Your love for adventure will be so important in making this world a better place. I pray that you would continue to have that tenacious spirit, which has marked you since birth….but that it would always be balanced by the tender. May love always be the guiding principle that directs you and sustains you. Remember that you serve the King of Light, and that he is always worth the battle.

I love you, my mighty warrior.

For the King,

Mommy

Eating your “chocolate hot dog” 😂😂😂

Out for a special dinner with brother (whose birthday is also this week!) and mom and dad. You guys were so over-the-moon about these soda bottles, you have been refilling them and drinking water from them.😂

On an adventure at the meadow with Judah❤️

Frozen yogurt with mom and dad after you and Judah finished your math!💕💕

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Finding words….DAY ONE

The One RB World conference in Washington D.C..

I am still finding the words to process it all, but the bottom line is that it SO far surpassed my hopes and expectations that it is difficult to find a starting point.

The first day was largely geared toward families and survivors. And that first day immediately caught me off guard with how tender things still are in my heart. I saw areas where maybe there is still some processing and healing to be done. (Perhaps more on that later?). And I saw that, PERHAPS…..maybe there are some ways that I need to care for myself more fully which would not only benefit myself but my whole family as well.

We took an amazing bus tour of D.C., which was really fun, and gave us an opportunity to connect:

My bus partner Hilary is brilliant! She runs the Impact Genetics lab in Canada.

Kristen is on the We C Hope board and is amazing at all things. We *enjoyed* early mornings together working the registration table.☺️

It was a fantastic and full day. And a great start to the conference.💕

Early morning

It is so weird that this view has become so normal to me.☺️

This morning, Ben and Elijah drove me down to LAX, and for the first time-at least in the last few years-I went through security by myself.

I’m headed to Washington D.C. for the One World Retinoblastoma conference. There will be lectures by many doctors prominent in this field. There will be Q and A sessions and networking and other families who are walking this road. I feel so privileged to have the support of my family, encouraging me to go and learn everything I can for our “Buddy Boy.”

I made it through security-although they have already made some changes in the last few weeks since I have flown.

Now just waiting to board and praying for my family while I’m away.🙏🏻❤️

The Big 4-0

Benjamin Paul,

In our almost 18 years of marriage now, we have seen good days, and some really hard ones.

These last couple of years have been especially difficult in many ways. You know me-I don’t like to be weak. I like to be strong. I like to take on the world. And then some.😉

I don’t feel strong a whole lot these days. I feel more like I barely make it through night shift week. But my favorite moment of that week is Thursday morning. You get off that week of working somewhere in the realm of 100+ hours, you climb into our bed and I melt into your arms. We both feel a sense of almost giddiness: we made it another week. The last bit of adrenaline that has sustained both of us is gone. There’s nothing left of us…except the rush of knowing that we have each other.

After all this time, you’re still my best friend. There is no one else I would rather do this crazy life with. And as we were working on my latest project….I thought…there’s no one I’d rather work this hard alongside.

Tomorrow is your birthday, and you will be forty years old. You still look about 25, except for the careful look which reveals gray hairs on both of our blonde heads. But we’ve earned them I think. We have earned the wrinkle lines both from smiles and trying to solve problems.😉. We earned these tired, ragamuffin bodies because we have pushed them hard in these years.

You know, the number forty has great significance to our God:

  • It rained 40 days and nights when God flooded the earth because of the wickedness of man’s heart
  • Israel wandered in the desert for 40 years because of their unwillingness to believe and obey God
  • Moses went up on Mount Sinai for 40 days when he received the law
  • The spies went and checked out the Promised Land for 40 days before they came back and gave their report
  • Jesus fasted 40 days and nights

And on and on I could go, because the number is so significant, it is seen more than 150 times!

But for you, I think it is significant–or at least my prayers for you, for us and our children, are that it is!

I pray that God’s Spirit would rain down upon us, cleansing every part, showing us where we have gotten it wrong, and how to move forward in His ways with grace.

I pray that where we have felt a little like we have been wandering, we would step into a new and fresh land of promise and purpose. Unafraid and unhindered by the difficulty of the wilderness.

Oh, I pray that we would have more frequent and more intimate times in the Lord’s presence-whether up on a mountaintop or in the valley, that His Word and His ways would strengthen us and give us grace to “walk worthy of the calling we have received.”

I pray that we would spend time, dreaming together of bigger things for the Kingdom of God–scoping out the Land of His Promises with greater faith and hope. That these years that have rocked us and worn us down would not keep us from dreaming BIG.

And I pray that more than ever, we would hunger and thirst for our God. That we would be satisfied in Him above all else, and that our deepest longings would be for eternal things.

I truly have a special excitement for this year. I pray that even when we are weary and worn and lonely and tired….we would come back to the moment where we melt into each other arms and celebrate every moment, every day, every week that we make it one more time.

I’m so glad you were born. Happy birthday. You sure do make 40 look good.😍

For the King!

Lisa

Big News!

Last night, I was trying to get a mischievous two year old to bed, and I was waiting on his mischievous 6 year old brother and mischievous 8 (almost 9!) year old brother to go potty and get in bed.

I heard the 8 year old boy climb into his bed. I called for the 6 year old boy.

No answer.

Then I hear running water in my bathroom.

I call again, this time slightly louder, but still trying to be quiet because I have the 2 year old boy laying on “mine’s” tummy.

No answer again.

Sigh. I take a deep breath. I’m going to have to get up and go get the mischievous 6 year old from my bathroom-but it means I will have to start all over with the 2 year old.

Sigh.

I come into the bathroom to find the 6 year old boy playing with my brush in the sink……

Deep breath.

“Judah? What are you doing? Mommy called to you two times and you didn’t answer.”

Judah bursts into tears and tells me, “I don’t know what I’m doing!”

And in that moment, the grace of God swoops back the veil for a moment. And rather than seeing a mischievous 6 year old boy, I see…..repentance.

He doesn’t understand why he is doing wrong. He isn’t even sure he wants to do what is wrong. In fact, he is very sorry he is doing wrong…. I see it in his face.

As I see this in him, I recognize the opportunity. We get him in bed, and I read from the Jesus Storybook Bible about David, the shepherd, who begged for God’s help and asked God to make his heart clean. Then we talked about Jesus, the Good Shepherd, who came to rescue us so that our hearts really can be clean.

We talked about repentance and being “bab-a-tized”, and how we need a Rescuer and how none of us ever get it right all the time-not even mommies and daddies!

I reminded him: “If you confess with your mouth that ‘Jesus is Lord’ and believe in your heart that God raised him from the dead, you will be saved!” (Romans 10:9).

I let Judah think about it all and take it all in.

So this morning, Judah came and curled up next to me on the couch and said, “Mom! You know what you were talking to me about last night? Well. I think I’m ready.”

And with Daddy just home from night shift, the three of us got to talk and pray, and his sweet, 6 year old boy prayer started with:

“Dear God, I don’t want to go my own way anymore. I want to follow Jesus.”

And in the sheer miracle of the moment I sat in awe of the goodness of our God. I could have blown up at Judah for playing with my brush in the sink and getting everything all wet….but His Spirit restrained me because there was heavenly purpose in it all!

I am so thankful for this moment in time, where I got to hear my 6 year old boy decide to follow Jesus.🙌🏻🙌🏻🙌🏻🙌🏻🙌🏻🙌🏻

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.