Joshua Has An Event - Part II

Friday, Joshua wasn't feeling well. 

I learned something very important. 

You cannot teach an ESL kid much needed vocabulary in the midst of an event.  

"Joshua, are you light-headed?" 

Confused look.

"You know, like woozy," OR better yet, act it out: Mom sways and falls on the floor.

Is your heart beating too fast? Too slow? Irregular? 

(Clap beats to show what irregular means.)   

Dazed expression.

Yah, definitely need to work on the vocab.   
I realized that while needing to make a hasty exit, my big kids were dispersed around town at classes and to top it off, I had an extra little sweetheart in my care. So my first call was to these very special neighbors. (In these parts, a neighbor lives within a mile or two.) 

Dave was on my doorstep within five minutes. Love him!

Before I even had Joshua buckled in his car seat, all the kids were outside swinging with Dave and waving good-bye. I do regret not taking the time to explain to them what was going on. 

Once I was on the road, I HAD to text Cheryl, my friend who has led a very parallel foster care/adoption/transracial family life. We have joked over the years about our dirty messy crazy busy houses and if we had to call someone in an emergency, we hoped it might be each other because then it wouldn't matter, that level of dishevelment and organized chaos that we call home. I knew she would feel my pain.

Because I left my house messy busy AND dirty crazy. Oh well. 

Priorities you know.

And she added her prayers because that is who she is.

About halfway over, God said, "Tell Kristel." 

Yes, she is my closet prayer warrior.

Even though she lives on the Continental Divide now, she has my back.

Kind of like a dot in the middle of my heart-mommy square. 

I highly recommend that everyone have a Kristel.

Then I remembered to call my husband.

Yah, I'm a dud. 

If I was super worried, he would have been home in a flash and we would have gone together but this was new territory with Joshua and I didn't want him to miss work for a false alarm.

We rolled into the office around noon and they were all business.

Weight check, symptoms relayed, blood pressure was fine, O2 around 86-87 which is Joshua's normal. All the same from when we were there a week ago for our regular check-up.

My favorite nurse, Kris, hooked Joshua up to an EKG and within minutes said, "Oh! I can see what he's feeling. You did the right thing."

I wasn't sure whether to feel relieved or notch up the worry-o-meter. 

Basically, his heart was giving a little extra ta-dump on every third beat. 

This is called: Trigeminy Ventricular Ectopy. 

Not completely abnormal in the regular population but when you have a special heart like Joshua's, definitely concerning.

The Nurse Practitioner came in to triage us, heard his funky ta-dump, and said we would go home with a 24 hour Holter monitor so they could see what was going on over a longer period of time. She told me what to look for if things got worse and also sent us for some bloodwork. 

Before our regular doctor appeared, he wanted to know via the nurse if we had made our appointment in Boston yet.

Have I told you about that yet? Joshua is scheduled to have a full evaluation with the heart transplant team at Boston Children's Hospital in the beginning of May. 

I feel a Part III coming on. 

The doctor appeared and did a quick echo to make sure the muscle and the valve were the same as he had seen last week. He said it all looked fine. He was also glad this happened before our Boston trip so that it would be on the radar. He was going to send an e-mail letting Boston know right away..

Well. What is going on? Is it the beginning of Joshua's total heart failure?

Too soon to tell.   

At this point, Joshua was back to talking and smiling. The nurse, the nurse practitioner, and the doctor all assured Joshua he wasn't dying and sent us and a monitor on our merry way.  

We asked the girls in the office where to find the closest recommended Chinese food because giving blood requires a substantial reward! 

Especially when you are Joshua, and you've had quite a day already. 

At this point we are about 6 hours into this "event" and the funky beats were tapering off. Now that Joshua knew what was happening, he started calling out numbers every three to four minutes.

2.......14.......7.......2.......17.......and so on, very matter-of-fact.

That's how many times his heart was misfiring successively.

The kid cracks me up. He is so smart.  

Blood taken - no problem. He filled those vials like a champ. 

Let-me-tell-you, the Chinese at the restaurant ate this guy right up.

Especially the twenty-something girl.

She asked me, "How much did your son cost?"

Some things get lost in translation. 

Her mother who spoke no English ordered her to get Joshua chopsticks and then oohed and aahed at his proficiency.

Me, I was the proud mother.    

After we had our fill of delicious Chinese food, Joshua made an announcement.

"Mom, it's all done."

"What? Are you full?"

"No, my heart. It's all done."

Apparently noodles and dumplings are a cure-all. Next time, we will head straight for the soy sauce.

Joshua has been fine ever since. 

I think if we ask him one more time, "Hey man, how-ya feeling?",  he might defect/ or throw up on purpose/ or ask for more candy. 

Which he will most definitely get... 

Postscript: Blood work came back normal. Grrr....we wait for the monitor results due in this week. 

Part 1 - When Joshua Had An Event

Friday morning, Joshua put his hand on his heart and said, "Mom, I don't feel good." 

Oh MY heart! 

Last Friday took the stuffing out of me.

Through it all I was rocking the three C's - calm, cool, and collected.

By Saturday, I was toast.

Joshua? He's totally fine.

As far as we know.

(This was his "I want to grow my hair pony-tail long and get an earring" phase.  

I could write a whole post about that. And you would be surprised.)

In twenty months on this continent, Joshua has never complained.

 Ever.

He is an awesome kid with a smile that lights up a room, or a family, or a church, or a town.

I repeat, Joshua never complains. Oh, except when I won't let him play the IPAD. 

Being the non-alarmist parent that I am, I sat on the "my hearts hurts" thing for about an hour keeping a close eye on him. He pushed through a math lesson and when I looked over, he had his head down on the table and was zoning out. 

He seemed to be breathing okay. But talking was diminishing. Kind of like when you are in labor and you have to concentrate on what is going on inside. Talking would be too much trouble.

I then asked him if he wanted to play the IPAD, the ultimate distraction. 

He nodded, "No."

I called.

Cardiology.

Immediately.

"Come in," they said after deciding whether it would be ER or their office. 

Ten minutes later, we were out the door and the kid had the nerve to fall asleep in the car. Totally readjusted the rearview mirror for that seventy-five minute white-knuckle-drive.  

At this point, although I certainly didn't WANT anything to be wrong, I also didn't want to show up and have them say that he was totally fine. I hate wasting other people's time. Being our first event with Joshua, I wasn't 100% sure he wasn't being grumpy. 

He is a normal 9 year old boy, after all.

While he was sleeping and I was alone with my thoughts, I figured  maybe I would send a few texts to some other heart moms who would understand the alarms going off in my head. Every stoplight, I furiously texted and forwarded. I kept the circle small 'cause at this point, I really thought it would be NOTHING. 

Rest assured praying people, if it was SOMETHING, social media would have been bombarded!

I will get to the rest of the story but as I was driving home, I reflected on the amazingness of whom I texted. 

Three China hearts moms.

Three other families who adopted seriously ill children not knowing if they would live long enough to get home.

From the same orphanage in Hangzhou.

Talk about the tie that binds! Can I be honest? I'm not sure if we all lived in the same town that we would be the best of friends. We all have very different lives and are at varying stages in life.  

But....we all went to China.

And we all adopted children with extremely complex congenital heart disease. 

And not one of us has a single-solitary-regret. 

Of this I'm sure.     

Here are the Heart-Hero-moms with their Hangzhou Honeys!

Andrea, with her son Bryce, is a dear friend who was the last person to visit Joshua in person before we left for China. She told me about his pigeon chest (thank goodness I was prepared for that because it is shocking) and confirmed his dear personality. She helped me through those first six months of learning how to live with a terminal diagnosis. We've never met because she lives in the northwest corner, yet somehow that doesn't matter a bit.

Mary brought Ivy Joy home last year and has endured five open heart surgeries alongside her daughter, spending many months thousands of miles away from her home in Arizona. Her inner strength is contagious and her calm spirit kept my sanity intact when we landed in Boston with Joy in a bit of an emergency situation.

Sonia adopted her very own Joshua and brought him home to Florida. The boys skyped from their hospital beds soon after and share many memories from their time together in Hangzhou. Sonia cares deeply for the least of these and is only a text away for some serious Calling-On-His-Name when needed.

These three women all responded within FIVE minutes. 

Assuring me of their prayers, support, and love.

Seriously? We four Hangzhou mommies hail from all four corners of the United States: Northwest, Arizona, Florida, and the Northeast.

What a square!

There are many other beautiful and supportive China heart moms that I have met along the way, but darn, I don't have their numbers...

This adoption thing is so much more than I ever imagined.

So much more. 

Part II - in which I thank others and tell.......the rest of the story where Cardiology was VERY glad I called. 

Easter Grace - The Circle Extended

  The depth of Lent,  preparations for Easter, our journey to the Cross.

We read Vinegar Boy each night as candle and cross inched forward. The story chronicles the day that Jesus died. We felt the imagery of the Roman persecution, the disdain of Israel, loyalty and love of the disciples, the wrenching earthquake and darkness as the Spirit drew near, the love of Jesus.

We discovered baked eggs.

Playing with paper.

To make something out of nothing...

We folded and made one cut. No one saw it coming. The cross.

Black and white, the darkness that MUST come before.

As I was lamenting the energy spent on gathering Easter clothes that would be worn for 45 minutes and discarded, God did a work in my heart that for my kids, the beautiful colors of Easter MUST come, we NEED to celebrate the empty tomb.

Watercolors washing over the Cross.

And then the day came when He arose.

 And Easter grace was given.

And might you notice a new face here? 

Another brother and a mother joined us for church and a meal.

My husband left at 6:00 am to go and pick them up and be back in time for church at 9:00. And to interject some humor, a quick stop at Stuff-mart on Easter morn to get Erik some shiny black shoes because I cannot keep up with the footwear, I just can't.

She loves all my children. 

This mother I share two children with.

After four years together, she is beginning to ask, to wonder at our peace in the midst of trial, could God love even her? Does everything happen for a reason, the terrible and the good? How can He help her make sense of her life?

When we invited her and the brother, I humbly went to those joining us for our Easter meal, people who have been on this journey of loving others with us for many years. I felt a responsibility to let them know that she was coming, asking them to extend the loving arms of Jesus past our family so that she could see LOVE in action. 

My friends and family did not disappoint. They loved on her. They accepted her. It wasn't awkward. It was right. 

Since that day, I have more deeply realized the ripple effect that foster care and consequently adoption have had, not only on our immediate family but everyone around us. We have asked others to accept people who look different from us, have intense and often tragic histories, who are still living a life filled with heartache and strife. 

And they do.

Acceptance, a beautiful way to define love.

Forty Glory - Today Might Have Been The Day

We are not fanatical about weight checks but we do ask Joshua to weigh himself a few times a week. We would want to know if he was losing ground because that might be a indicator of other problems cropping up.

Our goal since he came home (at 35 lbs) was to hit the magic number 4-0.

Today, I think Joshua may have crossed over into the next decade of poundage. 

Or pretty close anyway. We can definitely claim a straddle.

A few weeks ago we had a close call when Kloey and I witnessed a 4-0 on the digital scale at home. He screamed and took off running to find some more kids to share in the moment. By the time he got back to the scale he was 39.8 and not budging. That's how fast it goes on our little dynamo. 

This morning after breakfast he weighed in at a solid 40.2 pounds. Yahoo!!!

Of course, after he had his diuretic and before lunch he was back in the 39's once his body dumped all the fluid. That's how life is when you have a funky pumper. We don't want it to work harder than it has to so meds will always be part of our life!

But I think we've turned the corner and Joshua is thrilled! 

We have been plugging three snacks a day on top of meals and trying some protein drinks. Hello avocados, peanuts, cashews, cookies, and rice with olive oil. You are helping.

Come to think of it, he has been complaining about his shirts being a little tight....

Such a good problem. Bring it on!

It's Hard Both Ways: Adoption

We have three adoption scenarios. 

All of our domestically adopted children came through the foster care system and subsequently had visitations with birthparents that went on for years. They remember their families, aunts and uncles, grandparents, and siblings. They remember places and birthdays and animal friends. They remember.

 **********************************************************************************************

Presently, our older girls have no (or limited) contact with the people who were part of their lives until they were four and five years old. Our paths cross every so often; years ago an Aunt who works at the grocery store made herself known to me. But so far, there have been no "relationships" built or maintained. 
This was not a fearful or conscious decision on our part but we were guided by some wise social workers, Casa workers, and a therapist, to cinch up the circle for awhile giving the girls time to heal and grow.

It's hard. 

Really hard.

This not knowing.

 Nor can we answer the questions that inevitably come.

 At least not to their satisfaction. 

We cannot assuage the grief. 

We cannot change the circumstances. 

We cannot turn back the clock.

So we hold them and comfort them. We learn to listen. We grow thick skin and try to bear the grief when the arrows of anger are hurled straight at us. Though it is not our fault, these terrible things that happened. The gaping loss in their lives, we weren't on the scene.  

But we are here now. Forever.

And when they are ready, we will confront the past with the present and go find the people who, in their minds, still matter. We will support them and be present for whatever comes when truth is revealed. 

 **********************************************************************************************

Years later, when the babies came, the opportunity to create an open-adoption relationship came about. Why not, we thought? We knew the way with the girls wasn't ideal. Perhaps there was another way to do adoption. 

Maybe maintaining relationships would be better, the grief less, the questions answered in real time? We had a choice, no one would have forced us or twisted our arms, but we decided we wanted this for our boys. We went forward with an informal agreement to stay in contact, made easy by the coming and going of little Miss Rosy. 

And what has developed has been nothing short of amazing and crazy and wonderful and bizarre and sometimes downright difficult.

Early on, she asked us to adopt Micah. We were stunned, unworthy of such honor. The heartfelt entrusting of flesh and blood to our care and keeping was overwhelming.

She came to Trey's adoption. She came to help us celebrate the eighth "birth" into our family though she was laced with pain and sorrow in doing so. The what-ifs wracked her. How could they not?  But she came for him, for us, for her. 

That my friends, is strength. 

But, and perhaps there is always a but, it's hard this way too. 

We have annual photo sessions with the other siblings, as many as can be gathered that year. We often stop by to visit and play. We shop for the kids and pierce ears together. We've even gone to the beach a few times. Twice we have shared a meal in our own home. 

However, there are emotional ramifications for our boys. Even though they were babies, they know. They feel the loss. It's much more subtle than with the older kids but the confusion is still there. 

When we are together, my boys are doted on and played with, tossed in the air by the older siblings. Loved on. And they adore the attention. 

And I squirm.

Because we only allow them to see the good side.

We are fiercely protective of our young sons. They don't see the domestic violence, the drugs and alcohol, the regular police presence, all the dysfunction that led to their removal. 

They don't know.

We have inadvertently created another kind of fantasy. 

And the Mom and I? We talk about the day when she will have to tell them the truth. The hard truths.

Together, we pray that the love we share for these children will carry them through those inevitable questions and the stretching days of, "Who am I really?"  

 **********************************************************************************************

 Finally, there are the Chinese babes. 

Only just here. Learning about home. What a family can be. 

They don't understand about birth parents. 

One doesn't want to know or even talk about it. 

Yet. 

There may never be any answers for them. The people and places in their pasts don't exist on paper like the others; giving us another form of heartache to learn about, to carry for them and with them.

Still, we honor those unnamed life-givers for allowing us the privilege to know and love and cherish these beautiful, precious children.

 **********************************************************************************************

There is no right way to do adoption. No rulebook, no road signs. 

But there is hope. 

And we have had the privilege of watching each of our children 

reach out and grasp tightly the hope that is true and right and real.

I lift up my eyes to the hills-- where does my help come from? 

My help comes from the LORD, the Maker of heaven and earth. 

He will not let your foot slip-- he who watches over you will not slumber; 

indeed, he who watches over Israel will neither slumber nor sleep. 

The LORD watches over you-- the LORD is your shade at your right hand; 

the sun will not harm you by day, nor the moon by night. 

The LORD will keep you from all harm-- he will watch over your life; 

the LORD will watch over your coming and going both now and forevermore.

Psalm 121

Linking up today at We Are Grafted In with other families sharing the "openness" in their own adoption stories.