Beach Conversations with Joey

We took a full family walk on the beach tonight and went all the way to the view of the lighthouse.  This was the spot that Bobby and I had previously found which held all the good shells after the tide came in.  Joey didn't want to come at first because he hates to walk.  He melted down for a second and cried, but Bobby was able to get him to calm down and come with us.  We were all searching for shells and Josh told us to find the best one so that we could compare when we got home.  It started to sprinkle, but stopped a minute later.  As soon as the rain came, Joey said, "it's raining!  Can we go home now?"  However, because it stopped, we stayed for another minute.

I was busy looking down searching for a "cool" shell and didn't notice that everyone else had started walking back until Bobby called my name from a distance.  I looked up and turned to follow them, and saw that Joey was at my side.  He said, "Mama, we're walking back.  I came to get you."  I was so touched by my sweet 4 year old boy, who has had some difficult moments lately throwing fits, walking all the way back to make sure I didn't get left behind.  We walked, hand in hand, the entire way back down the beach to our rental house.  The conversation that followed was nothing short of God-ordained.  A gift given to me, and hopefully to him, too.


Me:  Thank you so much for coming back to get me Joey.  I love you so much.  You have a wonderful heart.

Joey gave me a big side-hug.

Me:  I'm so proud of you for walking all the way down the beach and not fussing.  You're doing awesome, buddy.

J:  Warriors do the hard thing.

Me:  That's right, warriors do the hard thing.

J:  Warriors protect the weak.  I'm a warrior because I'm going to protect my family.  If a bad guy was coming, I would stop him, even if I was scared.

Me:  That's awesome bud, good job!  But you know who God has appointed to protect all of us?  Daddy.

J:  Yeah, but I'll protect my family from bad guys.

Me:  That's awesome, Joey.  The world needs you to be a warrior, and God has given you such a strong heart.  You know what?  There aren't many warriors in this world, bud.  This world needs you to be a warrior.  You are such a special person.  God has made you with such a special purpose.  I don't know what he has planned for you as a grown up, but I know it's going to be amazing because God has a made you with a very important, special purpose.  He knows exactly what he created you for, and it's going to be awesome.

J:  I'd be like David and Goliath.

Me:  Yeah!

J:  Because David was a kid and he was scared, but he still did the hard thing.

Me:  Well, I'm not sure if David was scared because he knew God was with him, but he was a little bit older than you.  Maybe 10 or 12.

J:  Yeah, because kid's don't die.  Well, sometimes they die.  And sometimes babies die, right?

Me:  Yeah, sometimes babies die.

J:  Like Caroline.  She almost died because she almost didn't get surgery in time.

Me:  That's right, she almost did.

J:  Yeah, but she got surgery and didn't die.  Sometimes kids have surgery.  Does that happen to grown ups?

Me:  Yeah, it does.  Papa had to have surgery one time, before you were born, to save him because of his heart.

J:  Oh.  Do I need surgery?

Me:  No, right now there's nothing scary going on in your body.  You're healthy.

J:  Well, I can protect Caroline because I'm a warrior.

Me:  That's right.  We all have to protect Caroline.  And you get to protect her because you're older and can take such good care of her, and keep her safe and protect her from bullies.

A minute later:

Me, looking at the most beautiful pink, purple and yellow sunset:  "Joey, I imagine that sunset is what heaven looks like.  The most beautiful sunset you could imagine."

J:  I think Heaven is all yellow.

Me:  Oh, all yellow?

J:  Yeah.  But God is all the colors.

J:  Mama, can God hear us when we're in Heaven?

Me:  Yes, He sure can.

J:  Can he hear us now?

Me:  Yep!

J:  Can we hear Him when he talks?

Me:  Well, we don't usually hear God talk to us out loud on earth, but when you believe in Jesus, the Holy Spirit tells us what God is saying.  When we read the Bible and learn more about who God is and what's important to him, we know the right thing to do.  And if the thing we want to do is the opposite of what the Bible tells us, then we know it isn't the right thing to do.

J:  If we do what isn't in the Bible, then it isn't right.  I don't know where it says that in the Bible, but I know that's what it says.

Me:  Well, we'll have to read in the Bible more, bud.  You could start reading the Bible now I think.  You're such a good reader that I think you could start reading some of Jesus' stories.

At this point, we reached Bobby, Bobby Sr. and Caroline.  And then Bobby asked me if I had seen the rainbow.  Apparently, on the opposite side of the sunset, the opposite side of where Joey was and where I was looking, was a bright, large rainbow across the sky.  What a gift.  It's a memory of Joey that I had to write down, because I absolutely never want to forget it.

Is The Life In The Legs?

In December of 2017, we found out that Caroline would be born with Spina Bifida.  It was shocking (although, oddly we felt prepared - read my previous blog), and we began doing all the research that we could.

I came across an article written by a mother in the United Kingdom.  The summary of her post was that they found out their son had a high enough lesion that, likely, he would not walk.  They decided that it would be unfair to let him live and suffer through a life with a medical condition that would leave him without the use of his legs.  They aborted him.  In her retelling of her story, the mom recalls feeling panic and regret just before the abortion began, but her husband was with her assuring her that they were doing this for their child.

I cried.  I hurt so intensely in that moment for this couple (and their other children) who missed the opportunity to know their child because they were scared of what life would be like for him.  Or what life would be like with him.  Now knowing my own daughter, 18 months out of the womb, I grieve even more for them.  Make no mistake, when your child is diagnosed with a condition like spina bifida and they aren't even out of the womb, your world is upside down and you think the worst.  It can be a very dark time emotionally and spiritually.  It was for us.

But we have to ask ourselves, what defines the value of life?  What gives value to your children's person?  Is it in the legs?  If one day your child lost their ability to walk or use the bathroom on their own, would they lose value to you?  I think the truth is, we can't say what defines our value.  Our view on human worth should start with a fundamental knowledge that we are not the ones that give life to our children, but it is God who creates and grows them.  Because He gives them life, He also gives them their value.

My daughter is nearly 18 months.  She's had 6 surgeries since birth and started out very behind in her mobile skills.  She's now talking more than the average toddler.  She crawls everywhere and is learning to walk.  She gives me kisses over and over, followed by hugs and snuggles.  She copies her brothers and sister and laughs when they do something silly.  She is deeply loved by hundreds of people who have watched her grow.  She has already taught us of the amazing ways God is in the little details of our lives.  She is who He has always meant for her to be.

3 weeks after Caroline was born, our neurosurgeon told us, "there's something that happens in the minds of spina bifida children that makes them some of the sweetest kids in the world."  Turns out he was absolutely right.  Our daughter has a sweet, sweet spirit.  Life with her is bright, joyful and a constant reminder of God's grace.  Would I heal her legs, hydrocephalus and bladder if I could?  Yes, because as her mom I want to take away her struggles.  But if these things are what shape her heart and influence who she is, then I wouldn't change a thing.

At least 1/3 of babies with spina bifida, diagnosed before birth, are aborted.  In other words, out of 90 babies diagnosed with spina bifida, 30 of their parents will never know how amazing they are.  

To the parent whose baby has been diagnosed with spina bifida, your baby is a blessing.  Even in the midst of coping with a difficult change in your lives, please know that your baby is still your baby, a precious gift, even if they aren't how you initially expected.  God will bless your life through your child.  He may even change the world through them.  Your baby's life matters, and you are stronger than you think.

"As [Jesus] went along, he saw a man blind from birth.  His disciples asked him, 'Rabbi, who sinned, this man or his parents, that he was born blind?' 
'Neither this man nor his parents sinned,' said Jesus, 'but this happened so that the works of God might be displayed in him.'"
~John 9:1-2

I Would Have Missed This....

It's often frustrating and discouraging that we weren't able to stay in Texas to have the fetal surgery.  I get angry at the doctors for the mistake they made in not letting us have it as I feel Caroline move and realize she could lose her leg movement.  So I want to remember the amazing moments that I got to experience up to her due date (things I would have missed if I had been in Texas for 3 months).

Trey wanting only me to comfort him when he bumped his head 3 times in one day.

Practicing piano with Gia and watching her growth.

Joey sticking out his lips and talking in a deep voice (I whanna snack, Ma.Ma.)

Trey reading his first sentence.

Nerf gun fights.

Picnic movie lunches on the living room floor.

Caring for Gia in the middle of the night when she had the stomach bug.  Then cleaning the bathroom after a "missed attempt" while she stood beside me keeping me company.  When I told her to come get me if she missed the potty during the night, she said, "but then you won't get to sleep."  And she told me, "I hate being sick.  I can't even help making dinner!"  Sweet girl!!

Joey putting a plastic bag on his head as a hat and wearing it around the house for 45 minutes, like it was a totally normal thing to do.

Meeting Kenna's baby.

Hugging Joey for a good 2 minutes when I lift him out of the crib in the morning.

Learning that Joey's favorite color is red because that's the color shirt he wants to wear everyday.

Hearing Joey say, "I'm not shute (cute)!"

Hearing all about Gia's day after picking her up from school and having good conversations with her on the way to piano.

My long walk in the neighborhood with Trey where I got to ask him all about his favorite things.

Valentine's Day date with Bobby.  He made the best beef stroganoff he ever has and we watched Wonder Woman.

Giving Trey a bad haircut and having Brianna come over to help me fix it.

Trey making a "race track" during his morning bath with the bath paint and being fascinated that the water turned blue.

Watching shows with Bobby after the kids go to bed.  He often gets me ice cream.  One Sunday afternoon, I won a bet and he got me an orange soda.  I let him get one, too :)  I made an Orange float out of mine.

Going in Gia's class for math helpers, Valentine's Day and Math Night.

Enjoying Bobby's Mexican roast.

Taking photographs of new babies and pregnant friends.

Wednesday, March 14, 2018:

Two warriors off to save the day!

 Joey's warrior run!

I asked Trey to smile...

I asked Joey to smile...

I asked Trey to really smile, ha ha!

Joey's "Hulk Smash" face

Trey's Kerby face

They were attempting to both make Kerby faces.

This morning my boys ate fruit loops, watched Sonic the Hedge Hog, and then went outside to play and watch the front loaders and other diggers work on our street.  They pretended to be Sonic, Kerby, Captain America, "Hulk Smash" and probably others that I didn't hear.  They ran around, climbed on the stones, put on their "warrior" faces and just enjoyed each other.  I was wrapped in a blanket with my book and camera in hand having the best time watching them.  Cool and cloudy, messy faces, hair and teeth not brushed yet, my PJs still on and a constant change of super heroes... makes for the perfect morning outside :)

Saturday, March 17 (St. Patrick's Day)
- making green eggs and cinnamon rolls with green frosting for breakfast.  Listening to Irish punk music and watching Bobby dance with the kids.  Telling the kids all about who St. Patrick was and how he told Ireland about Jesus.  We watched a cartoon video about his story and they loved it.  When Gia heard the part about St. Patrick going back to Ireland to share the gospel with the people who put him in slavery, she took off running to the bathroom to read the verse that has been on the mirror:  "But I tell you, love your enemy and pray for those that persecute you..."
- Getting ready for Nana's birthday (running errands with Gia and Joey)
- Going to Hobby Lobby with Gia to get ribbon for matching bows for her and Caroline.
- Selling our bench and meeting the ladies who had daughters with severe disabilities.
- Bobby and I making beef stroganoff.

27 Week Caroline Update

This whole process of our daughter's condition has been a roller coaster of emotions.  We feel hopeful one moment, helpless the next.  Confident in the Lord's will, then questioning what His purpose is in all of this.  Completely encouraged by the gifts and encouragement of others, and completely in the dark with all the doctors involved in this case.  Thankfully, the Lord has allowed one of us to be strong with godly perspective while the other struggles, and I'm even more in love with my husband each day as we grow through this together.

A lot has happened in the past month, but the short of it is this:  At 22 weeks in Utah, Caroline measured in the 27th percentile.  At 24 weeks in Texas, she measured in the 5th.  This disqualified us from surgery and lead them to believe my placenta might not be working well.  At 26 weeks in Utah, she measured in the 31st percentile.  That kind of weight jump doesn't happen.  A mistake was made.  We could have gone through with the surgery.  But I'm 27 weeks today (3rd trimester), and our window of opportunity is gone.

I feel exhausted even writing about the up-and-down emotions we've experienced since finding this out.  Our doctor has a theory as to how it happened, but nothing has been confirmed and right now we really don't know what happened.  

The next step is figuring out the details of her birth, post surgery and care thereafter.  I have been told that as long as her head and spinal sac don't get too big, I can have a natural delivery.  That was the one bit of good news I received in the past two weeks.  After birth, they will close up the opening within 24 hours and she will, most likely, spend time in the NICU.  I'm struggling with knowing I won't be able to hold my baby for days, but I'm thankful I have a few months to process that knowledge and deal with it.  After that, her care will depend on the severity of her hydrocephalus and her neurological function, along with whether or not the chiari malformation has any affect on her (please pray it doesn't).

As we work through knowing we could have helped our daughter and now can't, I remember the blessings God has graciously given us:

* All of you, reading this, who have prayed for our baby, given us gift cards and letters, speaking words of truth and encouragement and forgiving me specifically when I can't remember things (even though I write them down on my calendar).

* The AMAZING doctor we have to deliver Caroline.  That's a whole other story, but we should not have had access to him (he's extremely busy), and are completely thankful for the connections that lead us to him.  I'm also thankful for another medical professional who has called to check up on us through all of this and will be very involved in our care after Caroline is born.

* Our families, who have sacrificed time and money to care for our children, clean our house, make meals and be here for us as we seek joy in the grief.

* We've had opportunities to share our faith with a lot of people, including every doctor we've come into contact with.  We WILL glorify the Lord in all of this as best we can.

* Seeing our church rally around us and take on extra responsibility (especially in Kids ministry).  It's really been an honor to see.

* The fact that I am not separated from my children for 4 months.  I'm so thankful to be with them every day.

We know God doesn't need this surgery to heal Caroline.  We also know that it may have been his plan all along for her to have special needs.  In either outcome, we know He is good and we know He is sovereign.  Yes, it's very hard.  I don't want to watch my baby suffer.  But He has created this amazing human that He loves so dearly and she is going to show us what strength and joy really mean.  

Please continue to pray for her healing.  God is able and we pray this boldly.  Please also pray for our confidence in Him if He chooses not to heal her.  I have asked God to make her joyful, and would love for you to join me in that one, also.  We are so very thankful for you all!

The Diagnosis

Does her head look okay to you?

Gently, "No."

Does her spine look normal to you?

Gently, "No."

After seeing multiple ultrasounds of three normal babies, I guess I could recognize when certain things didn't look right.  I knew her head wasn't as round as it should be.  I knew her spine was a little bit too curved.  The technician said, "You're asking me these questions as if you knew something wasn't right already."  I told her, "No, I just remember what the other three babies looked like, and she's different."

Then, the diagnosis.  

"It's spina bifida," the technician told me.

I think I was expecting her to say "scoliosis."  Spina bifida took me off guard.  I know what it is.  After volunteering for 7 years at a Radiothon fundraiser for Duke Children's Hospital, I had some experience with the condition and knew what it meant.  I looked at Bobby and said, "this is a big deal."  He knew.  Even without know what spina bifida meant, he knew.

So we sat, a little shocked, as the technician told us how impressed she was with how we were handling it.  We cried a bit as we told her that we had known before conception that God had a special idea in mind for this baby, and I told Gia my tears were indeed happy tears when she asked because, yes, we are still grateful for this blessing God has entrusted to us.  

She told us that Caroline's leg movement was fantastic, and that was a great sign.  She showed us the opening at the base of the spine where Caroline will eventually need surgery.  Apparently the location of the lesion is also a good sign.  Then she walked us to see Dr. Davis.

Our doctor is the most wonderful OBGYN in Utah.  Probably in the world, if you want my opinion.  He was kind and calm as he spoke with us, but even he was a bit at loss for words.  He said it's only the second case he's had this year, and before that he can't remember having a baby with this condition in the past 10 years of his career.  So, there wasn't a whole lot he could tell us other than his experiences during his residency, although even that little bit of information helped.  We'll be going to see a specialist next week after we take a few days in St. George to digest the news.  Then we'll know more.

Have you ever seen the movie The Nativity?  I love watching it every year because, although not 100% Biblically accurate of course, it's so well done and gives a picture of how the characters of the Bible might have dealt with the situations surrounding Jesus' birth.  As we drove away from the doctor office, a line that Mary's character said played over in my head:

"Elizabeth, why is it me God has asked?  I am nothing."

I can't imagine what strength God sees in me to see fit to give me a gift with such special needs.  I often feel weak, emotional, forgetful, inadequate.  Why has He asked me?  I can only think that it's because this baby is not about me, but about what He's going to do in the world through her in spite of me.  When you see what incredible ways that Caroline touches people, you can know that it's is all because of the grace of God.  Not of my doing, but because of His strength and greatness and goodness. 

 So, we rejoice over this baby as we have with all our babies.  She's a blessing and a miracle, and we are excited to meet her and see who she will become.  

* UPDATE:  We have had tests done and seen a lot of doctors.  We are considering our surgical options but aren't sure what the next step is quite yet.  Please pray for God to give us wisdom to make the best choice.

I have not been good at posting blogs for little Joey.  Life just takes off with 3 kids and blogging has taken a back seat.  But hopefully I can remember some of the milestones that he is experiencing now.

It took until Joey was 18 months to say more than 5 words, but just after that point he took off and can now say just about anything!  My favorite of his words are "airplane, upsie (oopsie), shewie stinky, shhyeah."  His little voice is totally precious!  I love hearing each new word he learns (which is a daily thing).  I need to video him talking more so I can remember it when he grows up.

He's in 2T clothes, although as summer is ending I'm still squeezing him into his 18 month summer clothes.  He wears size 5 shoe, but is close to being in a 6.

His favorite foods are mac and cheese, cheese, cereal, smoothies, popsicles and any kind of dessert (especially fruit snacks).  He still doesn't like to eat fruit or most veggies.  It's amazing he's as big as he his since he seems to barely eat.

He's warm and cuddly but takes a long time to warm up to people outside the family.  I think this might change as he grows older because of his personality, but for now he's all about Stranger Danger.

He has been able to jump with both feet since about 19 months, and now he's a pro.  He loves to dance, jump and run!  He also loves riding in the new van!  It's been great riding with him now that he can't hit Gia the entire time :p

He wants to be just like Trey.  He wears a cape when Trey does, eats what Trey does, copies Trey when he talks or plays.

Joey loves to be outside, no matter what we're doing out there.  He'll jump on the little trampoline, blow bubbles (another favorite), go for a walk, play with Nola, or play at a park or splash pad.  I don't know what we're going to do when winter hits!!

Joey's going through a hitting/pinching stage.  It's not my favorite stage, but we're working through it.  Trey went through it, too, and came out of it, so I know Joey will, also.

He favorite people are definitely Gia and Trey, but he also likes to play with Sawyer and Zoe.  He of course is nicer to the big kids and likes to play with them as well.

He sleeps great:  2-3 hour naps and 11-12 hours at night.  It's a good stage!

He loves Mama and Daddy.  He also has his own routines at bedtime with us (he has to have a specific song from me and a tummy rub from Daddy).

His favorite movie is still "Baby Dance."  He also likes Little Einsteins and Daniel Tiger.

His favorite books right now are Brown Bear and Little Blue Truck.  He does love books!

Joey -18 months

My baby is quickly becoming a little boy.  This is bitter sweet for me because I love each stage that he comes into, but I will miss how sweet his baby stage has been.  He seems to be stubborn like the rest of us, but in a different way than Trey or even Gia.  He can fall apart in a second if we take away a toy or he's ready to take a nap, but he's quick to say I'm sorry and give cuddles.  He forgives easily and moves on to the next moment.   

Joey is definitely an extrovert, although he's recently been going through a separation anxiety stage where if we are around people who aren't very familiar he clings to me and doesn't want to play until he really gets comfortable.  If I leave him somewhere, he only cries for a moment and then has fun.

Some Joey facts:

This boy LOVES his baths!  He could play in the water for hours if I let him.

He is an extremely picky eater.  He loves sugar and I have to keep the cabinet locked where we keep the candy because he's learned how to eat through wrappers and open suckers!  

He listens and obeys fairly well, although if he really wants something he might shake his head no and then cry hard when he can't have it.  Most of the time, however, I can ask him, "Joey, will you please give that to [me, Trey, Gia, whoever], and he will walk right over and do it.  I'm also teaching him to say "yes mama" and he does it almost every time I ask.

Joey lives for praise!  I believe that words of affirmation is his number one love language, followed by physical touch.  

While Gia cuddled mostly with Bobby, and Trey cuddled mostly with me, Joey is an equal opportunist.  He loves and initiates cuddling with us both and will hug anyone he's comfortable with.

One thing that we do every week is grocery shopping on Monday mornings.  He and Trey sit beside each other in the car-cart and eat a free cookie while we shop.  It's become something I look forward to each week.

His favorite thing to watch (really the only thing he likes to watch) are our Classical Baby DVDs.  These were Gia's favorite as well.  Trey went right into Elmo Signing With The Stars, but all 3 of them enjoy watching Classical Baby with Joey now.  

Joey still drinks 3 sippys of milk a day (when he wakes up and during story time at nap/bed). Sometimes he gets another one after nap time while he watches Classical Baby.  

Bedtime routine:  reading Found while drinking milk, cuddling under his blanket, prayer with Mama.  Then I lay him down, smile at him as I hand him a book and either his monkey or Elmo stuffed animal and tell him night-night.  Later, I go in before bed and take his blanket out of the crib because one time a few months ago I went in and it was wrapped around his face.

He doesn't really have a favorite food because what he'll eat from one meal to the next changes.  He likes sugar, broccoli and mac and cheese most of the time, and is ALWAYS ready for milk.  Mostly though, if I let him feed himself he will at least take a bite... he hates when we try to feed him.  Mr. Independent.

He's in 18 month and 24 month clothes and wears size 4 1/2 size shoe.  He's still in size 4 diapers.

He weighs 24 lbs 15oz (60%) and is 33 inches tall (75%).  His head is becoming more proportional, ha ha.

He loves to be outside and play.  He's very into sports (shooting the basketball, throwing back and forth).  He's a good pitcher, but doesn't normally catch the ball (although he has before).  

Nola his his buddy!  She tends to run away when he comes up to her, but he is so sweet with her.  He hugs her and pets her as he smiles.  It's precious.