Broken heart, Cate, Tess

Tess’s Mindfulness Resources

This is Tess.  She is now 7 years old.  Tess is a Congenital Heart Disease Warrior, having lived through two complex open heart surgeries.  She had a major heart surgery on her 2nd birthday, and again at the age of 4 years, 2 months.  Those surgeries each came with difficult recoveries.  Tess is incredibly verbal, and around the age of 3 she began to say things that led me to believe that she was experiencing some Post-Traumatic Stress Disorder (PTSD) related anxiety.

Yoga had provided me a great coping mechanism for anxiety when I was working through my own medical trauma.  I was hoping it would do the same for Tess.  Tess began her own yoga practice shortly before her 3rd birthday.   She fell in love.  In fact, her 4th birthday was spent in the Yoga Studio, celebrating with all her fellow yogis.

Sign outside of yoga studio that states the day’s schedule, and also wishes Tess a ‘Happy Birthday!’

She loved it so much that she was able to tell us that her only wish for her birthday was to share some yoga with Bowen and Cate.  Daddy came along too.

Daddy, Cate, Bowen and Tess all sitting on red yoga mats, wearing red for CHD awareness, with their hands in ‘ohm’ position.

Yoga introduced her to mindfulness.  So did her local school district.  During the year that Tess attended 4-year-old Kindergarten (4K), the Kindness Curriculum was used.  This curriculum uses mindfulness practices to help preschool/young elementary aged kiddos learn to emotionally self-regulate.  The curriculum is available to you here.

The ideas that I saw Tess coming home with dovetailed beautifully with some of the ideas that I had learned in nursing school to help my tiniest patients work through painful procedures.  In nursing school, I had been offered the opportunity to attend a 12 hour training session to learn how to lead children in Guided Imagery.  I embraced it and immediately saw its benefits.  Anytime I placed an IV or an NG tube, I would ask a few questions about where the child wanted to go and we would let their imagination guide them there.  This distraction was key in helping their body relax and rid itself of some of the anxiety that came with these procedures.  This did not replace medication to help with anxiety, it was merely another tool in the toolbox.

I had already begun using Guided Imagery with Tess.  When she was anxious, we would ride unicorns through the clouds.  We would take a trip to the Magic Kingdom in Disney World, on a day when NO one else was allowed to attend.  Her and I, alone, skipping down Main Street.  This was so helpful for Tess.

Tess was given a small, smooth, pink, heart-shaped crystal by a wife of a beloved teacher who practices Reiki.  That crystal was in Tess’s hand the entire time she lay in the Cardiac Intensive care Unit (CICU) recovering from her second open heart surgery and subsequent cardiac arrest.  It is always in her hand as she relaxes to fall asleep at night.  It is part of her practice.

Tess has a 5-year-old sister, Cate, who is built entirely differently than she is.  Tess is a serious, empathetic, intentional, thinker.  Cate is a silly, wild, fun-loving, energetic, fast-mover.  Tess compares herself to Beezus and Cate to Ramona, the beloved characters of Beverly Cleary’s ‘Ramona Quimby’ series.  That is a very accurate literary parallel.

Tess, Cate, and now their 6-year-old sister, Gigi, all share a bedroom.  While Tess craves quiet and relaxation as she falls asleep, Cate has sensory needs that make it so she needs something aside from that to help her go to sleep.  That ‘something else’ became constant chattering, jumping on her bed, swinging from the bottom of Tess’s lofted bed.  Cate could not settle.  Gigi is Deaf.  She simply removes her Cochlear Implant processor, rolls over, and ignores Cate.  Tess can’t.  Cate stresses Tess out.

Cate attends a preschool I own, where emotional self-regulation through mindfulness is a huge part of the curriculum.  Before rest time, the teacher in the room leads the children through a story that focuses on Guided Imagery/Meditation.  She is teaching them to find their own ability to practice mindfulness.  Cate told Tess that during these moments, she pictures a giant, purple dog in her head.  She rides that dog all around, not in a relaxed fashion, but in a wild way, she and her purple dog jumped over furniture, cavort through the grass.  They have the kind of adventure that Cate needs.

Tess seized on this.  She now talks Cate through her purple dog adventure.  I hear her doing this for Cate, helping her to relax as she and her dog visit our local park, running all around the playground, sliding down the slide together, becoming exhausted, and then slowly laying down in the grass.

Cate breathes in the grass, and she falls asleep.

I asked Tess about this, about how she learned it, about how she became so wonderfully effective at leading other kids through it.  This was her answer to me.  “I don’t know, everyone just did it with me.  My yoga instructor did it on my mat when she wrapped me up and rubbed my feet.  My 4K teacher did it when we had our belly buddies and we lay in a circle, watching them go up and down as we took belly breaths.  You did it in the Echo (Echocardiogram) Room, when they had to take pictures, but I was scared about my heart.”

She’s right.  Everyone in her life has taught her that this is a great way to cope with anxiety.  I am so proud that she is now able to help others cope.

A note: I wouldn’t hesitate to have Tess seen by a mental health provider, and to have her use medication if that becomes necessary.  And, it may.  I am a huge advocate for using ALL the tools in your tool box to help your child feel better.  Mindfulness is a tool.  So is medication.  Please don’t mistake my words here for either/or.  This is not.  It can be both/and.  

–FullPlateMom, who is going to do a tutorial on turning a Beanie Baby into a ‘Belly Buddy.’  But, it will be the stuff of Pinterest, so, consider yourself warned.

 

Broken heart, Cate, Dessert, Gigi

A Quieter Christmas. A Quieter World.

Last year was an emotional year for us as we figured out how to celebrate Christmas differently.  We grieved our way through.  Just a few days after Gigi nearly died after a routine surgery.  We spent almost all of January with her in the hospital recovering from a surprise heart surgery.  She is doing so well.  But, I’ve been through that enough to know that when the anniversary of these events rolls around, I don’t do so well.

This year I planned ahead to give myself a break.  I am taking a break from social media.  Facebook and Twitter are deactivated.  Those two are a double edged sword for me.  They connect me, but they also cause endless problems as people weigh in on situations they don’t really understand.  They’re both a blessing and a burden.

Last year was a year of quiet.  This year is a year of new traditions.  On Christmas Eve, set aside hours to play an epic game of Monopoly.   We saved all of our sugar cookie dough for later in the day, then we frosted for Santa.

We ate Chinese food in new Christmas pajamas and made a tradition out of watching The Princess Bride, which has nothing at all to do with Christmas, but is one of our all time favorite movies.  There will be pancake breakfasts and plenty of time spent just looking out at the fresh snow, because my child care centers are closed until after the New Year.

I’m breathing in the joy that comes in the morning.  It looks something like this.

–FullPlateMom, who wishes you a very quiet holiday too.

Broken heart

My Turn.

I pride myself on never getting sick.  I had enough of being sick during my late teens when I spent months upon months in the hospital.  Since that time, I have promised myself that I’m not going back.  I exercise, eat right, and do the best I can to stay healthy.

I blew my streak to bits on Friday night with what I thought was a stomach bug, but actually landed me in an Operating Room.  It all turned out fine, and I was discharged at 1am because I am all about getting OUT of the hospital.  I did everything they asked of me, and made a safe choice when it came to leaving, but I did it because I couldn’t imagine how Tess and Gigi would feel if they woke up and found out I wasn’t in my bed.  The fear there would be so awful for them.

Tess and Gigi know hospitals better than just about anyone.   How scary would it be for them to find out their mom was admitted to one?  I thought of them often as I did things like drink CT contrast and get IVs placed.

It all sucked.

The staff at the hospital was awesome, no question, but as they rolled me down the hallway to the OR, asking me consent questions as we went, I got a flash of panic.  Just a little.  I’m a nurse too.  I even have a graduate degree in a medical field.  But, when it comes to the people caring for you laying out all the risks, it’s still scary.  Kids understand more than we think.  Suddenly, I felt extremely small and powerless in that hospital bed.

There’s a usefulness to that feeling.  It is a reminder of what my kids go through every time they are hospitalized.  Gigi goes through it with limited language to express her fears.  Tess went through it when she barely knew us, and had no reason to trust we would do anything more than inflict terrible pain on her over and over.  It was a useful feeling for me to remember what it feels like to be small and powerless, rolling through those sterile hallways, so frightened.

–FullPlateMom, who won’t forget, because her girls need her to remember.

 

 

Broken heart, Gigi

Give Me Your Tired…

Gigi is home and recovering beautifully. Thank you so much for asking. Her energy level improves daily. The area of her scalp that was so damaged by the multiple surgeries she had to stop the bleeding in her head is healing little by little day by day. Her courage amazes me. She came home, she found her feet, and she wanted to run. That want, even though it caused, some scary falls, is what carried her through. Her determination is extreme. I am 100% sure that is why she is alive.

She does have a clotting disorder. That was a shock. But, it’s not unmanageable. It’s so much better to know these things and be able to face them head on. As Joe and I took a moment to absorb the news, which, literally, only took a moment, we both had the same kind of divine moment of gratitude.

Gigi is a miracle. This clotting disorder is completely separate from her hearing, vision and heart issues, which were probably all caused by one “something”, but we have yet to figure out what that “something” is. Prenatal infection? Genetic mutation or deletion? We don’t know yet. But, this clothing disorder is different, and also relatively rare.

Our sweet girl is the lotto of genetics.

It is a miracle she is alive.

I won’t take that for granted, not for one day.

Not taking anything for granted leads me to the next sort of semi-troubling “something” that has been happening in our home. I have been blogging here since 2009. This blog has seen me from four children to 11. From becoming Becky who lived in a bubble and didn’t really understand what her brown babies would face, to being keenly aware by being slapped with it over and over again.

Becky from the bubble, who wrote to you, only you weren’t here yet, in 2009 no longer exists. I think we all go through that, right? Life is one metamorphosis after another. You become, and you become, and you become. I’m becoming quite different than I was.

My children, obviously, are as well.

The hate we face is at an all time high.

It has invaded this little corner of the internet in ways I have never seen. I get more hate mail than I have ever gotten before. Foul mouthed, abusive, using the name of our President against me, hate.

I am what you profess to want me to be. A white, Christian, pro-life mother of many through adoption. The problem becomes when I speak the way this white, Christian, pro-life mother of many through adoption NEEDS to speak. It’s not the way some of you think I should. And because some of you confuse privilege with pie, thinking that equal means less for you, I get a lot of anger lashing out from a place of fear.

When I speak about my children’s black lives mattering, it doesn’t mean your white children’s don’t. I don’t know where you got that idea. I’m only speaking out, as an mother, any Christian, any person who identifies as pro-life, should. Because, statistically, facts have proven over and over black people are in danger in this country. Equal for my children does NOT mean I want less for yours. I speak out in favor of the ACA and people automatically assume it means I want people to pay more for the health care we all require as a human right. I do not. I want to pay less, but not on the backs of some of the children in my home becoming uninsured all together.

It’s loud here, so I have backed away. The question then becomes, if writing this publicly is so painful, do I take it back to what it once was, a blog of musings meant for only my children to read. Thousands of you visit every day. It is my hope that maybe by opening our lives like this, you laugh a little, and maybe learn something too. What you learn will vary. Maybe you’ll learn big families aren’t freaky, that childhood trauma isn’t a death sentence, or that black kids really do feel other-ed a lot in our communities. Maybe you’ll see the beauty in the broken and you’ll go on to adopt. Maybe you won’t, but you’ll understand why I see the beauty in it.

That was my hope.

I am so blessed by this blog. We have gained friends and support from it in ways I couldn’t have imagined, so it is definitely a give and receive situation. It feels like I’m giving a lot of my children though and receiving a lot of hate lately in return.

That has made me retreat just a little, to take the gift that my kids are to the world every day and hold onto them for just myself. I’m scared. It’s so hard for me to know, are they safe with you?

As I typed this earlier today, feeling so dejected, I watched tonight as several hundred people gathered at airports to try to protect complete strangers. I have to hold onto faith that you would do the same for my kids.

I would do it for yours.

FullPlateMom, who has no hate, and no fear, everyone is welcome here.

Broken heart, Gigi

Fly Home Buddy, I Work Alone.

We have now been inpatient with Gigi for eight days.  I haven’t really slept in a week and a half, since her initial surgery and rough recovery.  I have watched Finding Dory more times than I could have ever imagined.  It is what comforts her right now, and the girl who almost died gets whatever she wants, I declare it.  Each of my kids has had a movie that has comforted them through a hard time.  For Tess, it was Frozen.  Oh my gosh with the snow glowing white on the mountain tonight.  Over and over and over, it glowed.  For AJ, it was Incredibles.  When he first came to the U.S., leaving behind everything he knew, he watched Incredibles on an endless loop.  It was by watching that movie nine thousand times that we found the expression “Fly home Buddy. I work alone.”

At first it was a joke.  I would say it to the kids when they were up in my business.  “Mom! Mom! What are you doing?!?”  “Fly home Buddy.  I work alone.”  And, out they’d go.  Then I’d say it to Joe.  “Do you need my help with that?”  “Nope.  Fly home Buddy.  I work alone.”  Then I began to say it to myself.

At the beginning of this hospitalization I thought, “You’ve done this before.  You can manage it.  Life will be fine.”  When people asked to help I told them we didn’t really need anything.  “Fly home Buddy.  I work alone.”  Don’t visit.  Don’t help.  We’ll be fine.

We weren’t.

Joe has ten kids all alone at home.  Ten kids from backgrounds that make the unexpected REALLY hard to deal with.  I am staying at a hospital almost two hours away with a 4 year old who is non-verbal.  She is very sick and doesn’t have anyone here, aside from me, who can sign.

Someone started a Meal Train.  Joe has had meals every single night that I’ve been in here.  He has grocery money for the month, which means he can take time off of work if he needs to, just to be with the kids at home.  My parents helped bring the kids to and from their usual extracurricular activities.  His mom slept at our house so that he could work his usual night shifts.  The kids teachers have been taking them places on their days off.  That’s right, their teachers are volunteering their free days to be with my kids.

As I watched Gigi make progress over the last 24 hours, waking up more, drinking a little bit, doing some Physical Therapy, I also watched her become more depressed.  She’s not my Gigi.  She closes her eyes or stares at the wall.  Tonight, as I walked across the bridge to the Ronald McDonald House to get some dinner, I felt pathetic.  I’ve been in an ICU room all day, all alone, with a child I can’t comfort.  She’s so damn sad, and there is nothing I can do about it.  God, it’s the worst, loneliest feeling.

I went and got my dinner and went into my room for my ritual twenty minutes of alone time.  I stand in the middle of the room for twenty minutes, all alone, and just breathe.  No beeping.  No crises.  Nothing.  As I left the room I saw the voicemail light blinking on the phone.  My Amazon package was at the front desk.  I had ordered more hairspray and some slippers.  Comfort items.  When I got to the desk and introduced myself, the lady laughed and gestured to the cart behind her.

“Either you have an online shopping problem, or someone loves your daughter very much.”

A bunch of someones.

There were 12 packages there, each one of them different and special.  I put them at the end of Gigi’s bed.  Each time we have to do something painful or unpleasant, pulling a tube, making her sit up, I am going let her open one.  They will make the unimaginable less unimaginable.

–FullPlateMom, who doesn’t ever work alone.

Broken heart, Fruits, Tess

Our Own Physical Therapy

We are now one year past Tess’s big heart surgery.  So much joy in that!  She is still working hard to catch up on some of the milestones she missed because she was so sick for so long.  Tess is still behind in gross motor development.  She is 5 years old and her balance is still effected by being bedridden for so long.  Her body can’t do what other kids’s do without some major effort.  Her movements are jerky and uncoordinated.  She can’t come close to skipping.  We only just mastered galloping.

She doesn’t qualify for Physical Therapy anymore, not through school or our insurance.  She can function, yes, but we’re looking for more than that.  So, we had to do something else.

You’ve heard about Tess’s love of yoga (or ‘yuga’ as she called it for so long).  This has helped her immensely, and continues to help her.  In fact, her goal is to teach it to other kids.  I have a GREAT post about that coming up.

Tess also takes ballet.  Ballet of the Storybook variety.  It is SUCH a fun class, and so much of what is done overlaps with what yuga has to offer her.  They work on core strength and posture.  They work on control of movements, and, because the teacher is lovely, she works on breathing with the kids.

DSC_0254

DSC_0257And at the end of every session there’s a recital.  This time the kids put on Sleeping Beauty for us!

DSC_0281

DSC_0291

DSC_0289It really couldn’t have been any more adorable.

–FullPlateMom, who loves to see her girls find their inner strength.

 

Adoption, Attachment, Broken heart, Deafness, Gigi

The End and the Beginning.

It’s Thursday morning.  In our new world of never ending therapies and our constant quest for language, this is the morning where Joe takes Gigi to Hearing Clinic (I know, she doesn’t hear, it’s confusing, they work with her on processing language.  In her case, this means ASL).  This is the one hour I have all week where I’m not 1. With Gigi 2. At work 3. On the treadmill or 4. Passed out.  Life moves at breakneck pace around here.  I have about 56 balls in the air at any moment.  Over the past two weeks, I’ve dropped about 16 of them.

Work is hard.  I’ll admit it.  It’s hard to have 20ish people counting on you to make payroll, fix things that are broken, balance the budget, administrate their very necessary benefits (health, dental, retirement, etc) when you’re doing all the same things for a nearly equally large group of people that live with you.

School is hard.  My gosh, I didn’t expect this one.  School has always been my ally when it comes to the running of this large and in charge family.  Middle school, you stink lately, both the peer group you offer and the quality of education.  I had to take a long hard look at whether or not I want our kids to be part of these three years of absolute hell.  Thanks to a night of time away with some like minded mamas, I realized the value these experiences have in shaping who my kids become, and that maybe the middle school is truly doing the best it can right now.  Our education system is so broken.  For my kids who are enrolled in middle school currently, yanking them isn’t the answer.  We’ll keep going, one foot in front of the other.  I need to offer up help and see if we can do better together.  For the first time in four years, we’re not adopting again.  It’s time to volunteer a little more at school and complain a little less.  It’s time for my kids to learn that a free education doesn’t mean it won’t cost you in time, energy, and patience.

Health care is hard.  Tess and Gigi saw their Cardiology team last week.  Tess is a rock star.  One year ago, yesterday, she left the hospital to come home with her brand new FOUR chambered heart.  Dolly is home!We celebrated this monumental anniversary with a photo shoot in the main atrium of the hospital, in front of the fish tank we had visited so many times while she was inpatient.  We would take her IV pole, Oxygen tank, pulse oximeter, and we would roll it right up to those fish, like it was a parade of celebration.  She would last about four seconds, then we would roll the show right back to bed.

It’s hard to even fathom that now.

DSC_0142This was her leaving the hospital after her appointment, and after a shopping trip in the gift shop, of course.  DSC_0148

IMG_6466While Tess’s road is reaching the end, Gigi is at the beginning of this long path.  Tess will need lifelong monitoring, and maybe the occasional tweaking of certain elements of her heart, but the major surgeries are behind us.  We think.

Gigi will need 2-3 open heart surgeries in the next few years.  Her heart function is declining the way Tess’s was.  We had the choice to intervene now or to wait.  If Gigi had more language, I would do this while she was younger, because, less memories, easier healing.  Sadly, she was given no language in her first 3.5 years of life.  I have no means to explain to her what’s happening.  Can you imagine?  She would be so scared.  So, we’ll wait.  We’ll wait until we’re at a point where we can wait no longer.  That could be six months from now, it could be two years from now.  We’re living under that dangling sword again.  I hated that sword before.  Tess has taught me that you can’t focus on that.  You have to go on with life as if every day were a gift.

So, we do just that.

IMG_6442Gigi is an outdoors girl, for sure.  The midwest enjoyed a warm snap for awhile and she LOVED it.  She was outside from pretty much sun up to sun down.  She climbed, slid, swung and ran until she couldn’t anymore.  She is gaining strength and learning new things every day.

DSC_0140Earlier this week, we celebrated four months of calling her ours.  There are days when I want to curl up before, and after, all the therapies, after fighting all day, all week, all month, to get her what she needs, and say “I can’t do this! It’s doing NO good! She’s SO delayed! She’s so hard to work with! She’s never going to get where I need her to be!”  Then I look at where she is, where SHE needs to be, and I see all the progress she’s made.

And, because of that, and for her, I rally.  I pull myself up, and I fight on.

–FullPlateMom, whose hour is almost up.  Good thing too, she misses her Gigi.