Another birthday!!!

Noah Benjamin,

Happy birthday! You are twelve years old today! Your last year before becoming a teenager☺️❤️

You are such a loving young man. Today, when it was time for Daddy to drive me to the hospital to be with Uncle Shane, you said that you wanted to come up and see Uncle Shane and Grandma. Even when I said you might have more fun at home with your new books and drawing materials….you still wanted to come.

I love how you see things. You love Marvel characters and are quite talented at drawing them.

I am so proud of you and the young man you are becoming. Thank you, for being so gracious and sharing your momma today. I am really sorry that you are becoming used to sharing your birthday with the tragedies of others…..but I truly applaud your loving heart, and your willingness to make the hurts of others so important.

I love you Noah. May you know how truly loved and special you are, and may you always love as big and bold as you do now.

I love you,

Mom

Prayers for Shane

Please pray for my brother Shane Nash. He was in a car accident Wednesday and was taken to Ventura County Medical Center.

It was determined that he has two fractures in his neck, a broken rib, a chest tube for a partially collapsed lung, and a fractured heel.

He was transferred to Cottage Hospital for investigation of a damaged artery in his neck, but today we learned that they will treat with blood thinners and reevaluate in two months to see if further treatment is needed.

He is not up for visitors at this time as he cannot talk or move much without pain. You’re welcome to leave notes of prayers or well-wishes for him here and I will endeavor to read them to him in the days to come.

He has a long, long road of recovery ahead of him, and your prayers and encouragement are appreciated for every step of the way. Thank you for loving him.

Double digits!

Ezra Lucas Knight Hester! Today you are ten years old. It is safe to say that you have changed my heart and our lives forever, and I just can’t imagine a life without you. You are truly a helpful young man, and you love teaching your younger siblings….as long as they don’t give you too much trouble.😉

You like almost all things active–you love riding your bike, your scooter, and are getting into skateboarding as well.

You fly through your school work many days because you just want to get to the FUN (but you are learning that if you don’t do your best work the first time….it will only prolong the time until you get to the fun stuff.)

I would never be the mom I am today without you. You have challenged me in ways I never even imagined possible, and yet the sparkle in your blue eyes make me see a world without the same limitations that I have in my own.

I just know you will do incredible things. Probably things that will keep me up at night. Maybe things that will change the world as we know it. My constant prayer is that you would love the things of the light. That you would always be drawn back to the heart of Jesus, which is the heart of love. That you would learn to live so confidently in the love God has for you that you can learn to bear offense and unkindness with the bold meekness of love. That when you get it wrong….you would run to Jesus, and not be afraid to say I’m sorry.

And that you won’t ever stop giving me your snuggle hugs and wanting me to rub your back.

I love you Ezra Lucas! Happy birthday, sweet boy.❤️

Love,

Mommy

Feeling Older

I had two secret little wishes that I prayed about before our recent trip to NY.

On my birthday, I learned that the worship team from our church was kicking off their Fall Tour for the new album….in NY. On my actual birthday, while I was in NY, they were going to be playing a live worship concert, and I REALLY wanted to go.

However, I knew it most likely wouldn’t work out because I couldn’t bring Elijah and I didn’t have anywhere else for him to be.

I think that was part of Emma’s motivation for wanting to come to NY–she wanted to watch Elijah so that I could go to the worship concert on my birthday. (So sweet!). But once we had the details all arranged and Emma was definitely coming with me….the tickets were all sold out for the Elevation concert.😏

My other secret prayer wish was that since Emma would be with me in NY, I wanted her to get to see ballet.☺️. The NYC Ballet has special tickets for young adults between the ages of 13 and 30, and since Elijah and I don’t fall into that age range, Emma would have to go alone. But she was up to it!

Unfortunately, we just didn’t really have the time with appointments and all, as well as the weather not making it very easy on us to do so.

Even though neither of those things worked out, it still ended up being a cool day. Emma and Elijah slept in, so I had some quiet time to myself in the morning. We had breakfast and took Elijah to a playground in Central Park that “he remembers!”

And then, we had the most amazing dinner at Armani with Joey and some new friends. I was quite scared to take a 3 year old to such a nice restaurant, but Joey took great care of him, and even got Paw Patrol working for him.☺️. Joey takes the very best care of us, and we always make great memories (hmmmm🤔 I think many of those memories for Elijah and Emma involve treats….but hey, what are uncles for, if not to spoil them?☺️)

Elijah was REALLY excited that he got to ride in a taxi:

It was truly a special evening to remember and the desserts were amazing!!!!

We also were given a special ride to the airport by Star Treatments, an organization that provides transportation for kids going through medical treatment.

They picked us up nice and early Saturday morning in a Sprinter party van!

They were so very kind to Elijah, even having snacks he would like….. but Elijah was pretty grumpy and was having a rough morning. It was still a huge blessing to have our transportation taken care of in getting to the airport!

The next day, Ben had a really nice day of celebrating planned at home. We have a recipe for gluten free waffles that is really tasty. So tasty, that the kids even prefer it to regular waffles! So, as a special treat, Ben bought a second waffle maker so he could make waffles for everyone.💕

We did a family bike ride to the park, and the kids enjoyed running around.

Then we had a nice celebration with my brother and his family, and my parents.

It was a really nice welcome home, especially after the traveling and the not sleeping much.☺️❤️

Breaking Point….

I love Ev’s facial expressions. Her eyebrow raising eye sparkles get me every single time.

In this picture, her face looks like how I feel: “Am I going to make it???”

Our flight home was rough, and let’s just say we had an experience that may have tarnished Emma’s impression of Brooklyn for quite some time.🤣. Ben said that he wants me to start wearing a GoPro when I go to NY because the stories I come home with are somewhat unbelievable unless you have real footage.

After a couple of days of migraines, which really wears on my resilience….we got the news that Ben’s work is changing our health insurance.

And none of Elijah’s doctors in NY will be covered.

This is a tough blow, for many reasons. But primarily, for a 3 year old to have gone through all that Elijah has, and to finally have some sort of routine, some comfort in the familiarity of these doctors who have SAVED HIS LIFE and his vision…..

Well. It would be really hard to make a change.

After spending most of the day feeling like Evelyn’s face⬆️, and lots of tears, which meant another migraine…..

I am at peace.

There’s nothing I can do right now, because we don’t have access to all the information we need to see just how it will all play out.

For now, I just need to rest in God’s faithful care of Elijah (and our whole family!). I need to prepare myself for the fight ahead–because I truly believe that continuing on with his current team of doctors is what is best for Elijah.

And then….somewhere in the deep part of me, I need to prepare myself to let go.

If I don’t win, and I can’t work it out for Elijah to continue, then I need to prepare myself to let go, believing that even then Elijah will be well cared for.

So. Today. I got up. I prayed and cried and worshipped and read my Bible. I called the people I could to begin the process of figuring this thing out. I enlisted a couple of close friends to pray for my weak and weary heart. And, now…..we wait. To see what comes.

If I, like Evelyn, keep looking up with determination and patience, I just may find myself on the other side of what seems like the breaking point, and on to the next adventure.

Update on Elijah

I’m really sorry it’s taken me so long to update today….

So, we arrived Tuesday night and Elijah did a great job on the flight. He slept through dinner, which was not ideal but was kind of nice because Emma and I enjoyed our time with my lovely friend Margaret. He woke up on the bus ride back, so I decided I should get some food in his belly before trying to get him to sleep.

We had worked with Starbucks to get a lower sugar version of a child’s hot chocolate when Elijah noticed a prepackaged box containing hard boiled eggs. We thought this was a pretty good choice considering all the tempting baked goods, so we went for it. He ate one and then part of another.

When we got to bed, Elijah was very restless and had a hard time getting to sleep. He woke up screaming about wanting to go home, and not wanting to go to New York. Upon further questioning, I’m pretty sure it related to the POKE he knew would be coming. He was pretty vocal the whole drive into the city☺️ about wanting to go home.

I finally got him to sleep, but by that time I had a hard time getting to sleep myself. Just when I fell asleep, Elijah woke up saying, “My tummy hurts, but not that bad.!” And then he threw up all over the bed.😳😳😳😳😳😳😳

The Bentley Hotel was so nice and brought up some new sheets for me, and I got everything off the bed. Once I got him settled back down, he eventually feel back asleep.

But proceeded to wake up about every hour or so throwing up. 😬😬😬😬

I kept checking him for fever, but he did not have one. Finally in the wee hours, it was as if he had gotten everything out of his system, and he fell asleep. I let him sleep in, but finally we needed to get up for his appointment.

I also felt that I needed to feed Emma at least. So we walked about 11-12 blocks to stand in line at a bagel place that was supposed to be really awesome. Unfortunately, the line took longer than expected, so I barely grabbed some bagels and then we had to leave to RUN the 11-12 blocks back to his appointment. Unfortunately, Elijah was not in a good mood and screamed the whole way. I tried calming him down but he wasn’t having it.

As soon as we got to the appointment, I picked him up and he calmed right down…..and all of a sudden, he was a happy guy! He wanted to EAT! So, we are very confident that it was food poisoning that made him throw up.

His appointment in dermatology was amazing!❤️🙌🏻. They said that at his age, they will just monitor his spots and watch them. But they asked if we could stay about 20-30 minutes longer in order to do some “specialized pictures” of two of the spots. Turns out, these *specialized pictures* provided a virtual biopsy!!! So they were able to tell me ON THE SPOT that they were benign moles. There are only 3-5 of these machines IN THE COUNTRY.

Needless to say, we were so, so thankful to be here and to have this care.❤️

Anyhoo. We needed to get over to the RMH and a good friend of mine was also transferring from the Bentley to the RMH. She had a car service that was taking her luggage and very graciously offered to drive our stuff over! So we were able to walk over and our stuff was there waiting! Such a blessing!🙌🏻

Joey cut Emma’s hair for her❤️❤️❤️❤️

And he trimmed mine as well. Then we grabbed a bite to eat and Joey spoiled Emma and Elijah with some yummy treats.

Elijah slept much better, and we were up early for the hospital. Elijah had a pretty hard time with his poke, (Emma could hear him screaming from the waiting room), but he calmed down quickly once it was done.

He looks great! No new growth or new tumors! We come back in FIVE months! And he woke up from anesthesia better than he ever has. Most of the nurses know Elijah does not usually come out of anesthesia well. The nurse carried him out and said, “He woke up nicely and asked for green juice?”

I’ll have to save the rest of our day for another post since it’s been pretty long already.

But thank you for reading, for praying, and for loving Elijah and our family.❤️

Goodnight❤️

We had a few unexpected twists just before leaving for NY.

First, I realized on Friday that I hadn’t been contacted about Elijah’s appointment with the oncodermatologist…..I called but no one was there. Fortunately, I called again Monday (and hey, maybe they were planning on calling the day before). Anyhoo! This appointment is actually not at the main hospital where Elijah is seen, but at another of MSKCC’s locations (they have MANY! throughout the city). This location is a bit farther from RMH, so I’m glad we figured that out and can adjust our plans.

Next, we received a phone call saying the RMH was full.😩. They said we could stay one night at the Bentley, and then, as long as there was availability, move to the RMH on Wednesday. So, we are hopeful that we can move tomorrow. It’s inconvenient, and I still haven’t quite figured out 11+ blocks with our luggage and stuff….. but, we really prefer the area as well as the playroom, the staff, and friends that are at RMH right now as well.

One thing that is kind of cool though–the Bentley happens to be closer to the location of Elijah’s appointment tomorrow. So, we will choose to be thankful and pray that it works for us to move to RMH tomorrow.

The Bentley also has a lovely view of the East River.❤️

Here We Go Again!

We are almost to the airport in the wee hours of the morning.

The other kids wanted to come in order to drop us off at the airport. I thought that was very sweet, and then I heard the kids talking about playing electronics! Evidently, Daddy had let them play on the drive home one time.

But I didn’t mind. I thought it was a special gift that in the midst of this craziness, the kids can find joy in driving us down to the airport and saying goodbye….and then enjoying a little game time on the drive home.☺️

Waiting to board our flight. So sweet to see my “bookends” having a very early morning conversation.☺️

Messy, but beautiful

Dear Benjamin Paul,

Tomorrow is your 41st birthday. I was thinking today, that with our birthdays so close, we have been celebrating our birthdays together for over 20 years! (Remember when we all went to El Torito, before the bug incident😳😬, and how they brought us flan and sang to us???🤣)

Every time I stop for a minute these days and slow down a bit, I start to get emotional. I never imagined that this is what our life would look like. It’s a mess! But it’s beautiful.

There are so many things I love about you. You are one of the hardest working men I have ever met. In fact, I’m not sure I could believe how hard you work–both at your place of employment AND at home–if I didn’t live with you to see it myself.

This past week, seeing you take such great joy in caring for your grandpa just reinforced my appreciation for the depth of your character.

I think one of the things that I’m most thankful for as I’m thinking of you tonight, is just how much you put up with when it comes to me. My intentions are good…..just overly ambitious at times. I mean, I want to love everyone and I want to save the world.😬. So I get these “great ideas”, things that sometimes involve just me, you and me together, or ALL of us. You are so gracious to just jump right in and work alongside me….and eventually you probably outwork me even when it wasn’t your project to begin with.

I dream of taking trips with you and exploring this beautiful world. I dream of lots of things but the reality of day to day life is much more messy.

And much more beautiful.

I don’t have beautiful pictures of us skiing together, or exploring the hiking trails of national parks across the country. I don’t have pictures of us having lazy, dreamy meals in some far off land.

But I do have memories of us side by side for countless hospital trips…..waiting for test results, making decisions about Elijah’s treatment.

I have you by my side, for great celebrations (like each and every precious one of our seven kiddos being welcomed into this world!), and really dark and hard moments, like losing the baby this year, or feeling isolated and alone through this journey with Elijah, or trying to constantly figure out what is wrong with this body of mine.

That’s what is hard about your birthday. I feel like I just can’t make it special enough to really say how much I love and appreciate you. And since it’s night shift week, I know that I won’t have the easy-breezy carefree-ness about me that I would like for you. It’s more of the messy–where we barely see you, and try to squeeze in a celebration amongst not much sleep and whining and grumpy-growly.

Sometimes I wake up and think, “How can this be our life?” Sometimes it gets so hard that I don’t know how we will make it.

I’m trying so hard to see the beauty in our mess. Even when my emotions are strong and I grow weary in certain parts of the journey, I know there is beauty all around me. I know that what we have is extraordinary, because God has been so kind to us and continues to show His grace. I know our children are extraordinary, and I am just amazed that we get to spend our days with such cool people…..even though the noise and chaos sometimes gets a little overwhelming. I know that our grocery bill is extraordinary, and planning meals and making food can sometimes be so intense…..but I am so thankful for our partnership as we try to navigate making healthy food choices that we think are best for them. I’m so thankful for your job, and for this house that we outgrew long ago, as we have been able to have four beautiful babies enter our arms in this very house, and our neighborhood is amazing! And even though I’ve gone about twelve rounds with our insurance company, I’m still amazed at how God has used them to provide what we need to take care of Elijah.

Happy birthday Ben. Thank you for putting up with so many of my crazy schemes. Thank you for loving me and our children and being willing to work so hard. I’m so glad you were born 41 years ago.☺️. I’m so glad that you made a decision to follow Jesus, and to do hard things in order to walk in His ways. I’m so thankful that together, our good Father has rescued us so many times and held us so close to His heart. And I’m so very glad that you decided to marry me, and that you continue to choose to love me and my crazy ideas, and our big beautiful mess. May we find the greatest joy and the purest beauty in following hard after our Father. May we seek His Kingdom above all else, and find ourselves in Him. And when it’s really, really messy, may we remind each other always how beautiful it really is.

I love you, and I wish you the happiest of birthdays.💕

Lisa