Cochlear Implant Mapping

In our book, Keeping Kyrie, we told the story of Mary getting her cochlear implants.

We also told her story in her own children’s picture book, Marvelous Mary.

It was a decision I always wondered what I would decide if I had a Deaf child, and then there she was – but still in foster care and her biological mother made the decision.

In our Keeping Kyrie book, we also tell the story of me getting my own cochlear implants, which was actually a really hard story to tell.

Getting cochlear implants was a difficult decision, but it was what I decided for me at that time.

I did not grow up in American Deaf schools, could not consistently get interpreters where I lived, did not have family who learned ASL or signed at all consistently, and the Deaf community I could access was so limited: either drama that I didn’t want, alcohol that I didn’t do, gossip in which I couldn’t participate, bullying that I didn’t want, or professional like me and isolated and living their own lives where we had little contact with each other (which maybe could have been different of an experience for me if I hadn’t been the only Deaf counselor in the state).

Regardless, I was so limited in access that getting cochlear implants became the choice for me.

I wanted to explore. I wanted to restore. I wanted new tools to try.

And so I did.

I culturally offended myself, and got the cochlear implants.

Maybe I got tired of fighting, and gave up.  Maybe I was worn out from defending myself, and quit.

Maybe I wanted my voice back in a world where no one could see it.

But it was my choice, and I own that, but really want hearing people to understand that the cochlear implants are a tool and not a cure.  I hear nothing at all, nothing, when they are not on my head.  When I go to bed at night, I take them off, and I hear nothing.  When I go swimming, I take them off, and I hear nothing.  When that lady rear-ended my car a few years ago, she hit me hard enough to knock them off my head, and I could hear nothing.  I am Deaf.

As a Deaf person, using sign language is a big part of my life.  That in itself is its own journey for me, as I mentioned not growing up in Deaf schools in America, and living in so many places and countries even well into my adulthood.  It took staying put in one place long enough to really become fluent in ASL specifically, and still now my accent or confusions or mixing with my other signs is as much as any other “immigrant” with a second language.  It’s part of why I know the Deaf school is so important to Mary and to Kyrie, and I am so glad they are going there and growing up there, and I hope we get to stay for as long as they need.  There are also regional “accents” or specific signs used differently in different areas around the country, just like a Jersey accent or a Michigan accent or a Louisiana accent or a Boston accent.  Mary and I have loved learning new signs used here in Kansas City, and its fun for us to compare to other signs we know from other places or countries.

That’s the preface I feel pressured to share, before I explain about mappings, because getting cochlear implants was a big deal for me.  It was a big deal for Mary.  It’s also not something we would ever say anyone else should do, or ought to do.  It’s a very personal decision.  It’s also not something to do instead of sign language, or to cure deafness.  I want to be clear about that.  It’s only a tool, and not a tool that works for everyone, and not a tool chosen by everyone.

But I did, and that’s the short version of why I did.

Here’s a picture of my scar on one side, back when I had no hair from chemo this summer.

Maybe I just wanted to see if it would change things for me at all, but mostly I wanted more choices in access to the world around me, during a time in my life when it felt like I had few choices.

But it’s more complicated than that, because cochlear implants are pretty controversial in the Deaf community, and for good reason.

Deafness, from a community perspective, isn’t something we need cured. It’s who we are. It’s our culture. It’s our language.

I wanted access, not a cure.

It wasn’t like it is here, where now we have interpreters everywhere we go and even the people at the gas station can sign. I didn’t have a Deaf ward to go to for church. I couldn’t do my work without better access, and I wasn’t ready to move. It’s more complicated than all that, but for me, at the time, it seemed like it was the best choice.

And for me, in the context of my own life at that time, it was an amazing adventure that offered new freedom and independence and access in different ways than before.

It’s not something I would ever recommend to someone else, or ever wish on anyone.  It was a brutal surgery.  Besides the actual healing, my taste nerve was cut along with the auditory nerve (the two nerves swirl around each other like a rope), so I entirely lost my sense of taste for two years, and am even just now still getting some of that back.  In one surgery, my skull was too thin and so they had to change where the implant was placed, and now they are forever uneven on the back of my head, which basically cured me of any OCD because my choices were to either let it go or just be crazy.  It just is.  Mary’s are more even on her head, but the surgeries are usually done six months apart at least, to give your brain time to heal, so that’s why they are often spaced a little differently and not perfectly placed.  The doctors are getting a little better at it, though, I have noticed, and placing them higher up now, too, so they don’t fall off so much. I have to admit I am a little jealous of that.

Having cochlear implants doesn’t solve everything, either.  In some ways, it makes things harder.  Like now people can assume I hear and understand them when I don’t.  People don’t try as hard to sign with me.  I get asked to do things that I really am not able to do, but people forget I am Deaf because of the implants.   It also isolates me in some ways, because a lot of Deaf people still resent them and a lot of hearing people still think they are a cure.  It’s hard to find a place in this “biracial” world between cultures.

But it’s not all bad.  I have learned amazing things, and gotten new experiences I never would have had if I hadn’t tried them.  There are some things it makes easier with fewer adaptions.  It was a god-send while living in Oklahoma where it was so hard to get access or interpreters or things like that which were my right but not legally enforced.

I shouldn’t have to have surgery to know what’s happening at your mental health conference.

Anyway, here’s how cochlear implants work:

There are things I love about them, like listening to Nathan practice violin, or not getting hit by cars as often, or sometimes I can hear the birds when I go for a walk.  There are amazing sounds in the world, like amazing colors, and I am grateful to have gotten a taste of experiencing them in this phase of my life.   I love hearing my children laughing in the backyard, and I love that my “hearing” will stay the same as I get older instead of losing it later.  I already dealt with that, so at least that’s one thing on my side health-wise.

But what matters are the children’s smiles, and how they play with each other.  I can see that, without hearing.   What matters is not the words people say to me, but the tone in which they present it and what their real motives are.  I can sense that, without hearing.  What matters is that I look both ways before crossing a street, which you would think I am old enough to have some common sense to do.

And living here, in Kansas City, my cochlear implants are almost irrelevant.  There is access everywhere.  I have interpreters when my children have IEP meetings.  I go to a Deaf church.  My oldest and youngest daughters go to Deaf school, and are more fluent everyday, and they help my other children practice and keep up and continue to make progress in their learning.  We go to the theater, and there are open captions.  We go to the grocery store, or the gas station, or doctors appointments, and there are people who can sign even without interpreters, and interpreters available when we ask.  I have Deaf friends, who are gracious to me, even though I have cochlear implants.  I have Deaf friends, for the first time, who also themselves have cochlear implants.  It’s like Deaf Heaven here, and I wish I would have known a long time ago.

But now, here we are, in the middle of Deaf Mecca, and it is amazing.  We love our life here, and the accessibility, and the schools, and the people.  It’s been the most healing experience for all of us in ages.

Cochlear implants are not perfect, or the same as your God ears.  There are 32 electrodes to my brain, and to Mary’s, which is not nearly as many channels as hearing people have naturally.  It’s very rusty and robotic, which is part of why it is so terrifying for people who never heard anything to then try and adjust to the noise.   Even with my having them eight years now, they are still very overstimulating and cause me great anxiety.   Here is an excellent video about what that anxiety is like for people with Deaf anxiety – though I can’t use earbuds as a way to cope:

 

So even with cochlear implants, there is anxiety in some ways, and the cochlear implants are only a tool.  They do not make me hearing.  They do not take away my language.  They do not make me understand everything.

It’s like voicing: in the times I use my voice, that does not make me hearing.

My cochlear implants are not a cure, only a tool.

Using a broom as a tool to sweep your kitchen doesn’t make you a witch.

Wearing cochlear implants as a tool for accessibility and experience doesn’t make me hearing.

Along those lines, voicing for myself, or using my voice, or even writing a blog instead of videoing a vlog is not the same as being hearing or understanding what others are saying.

I wanted to share all that because I have a lot of new friends who are learning about Deaf culture, and learning about sign language, and learning about tools (like cochlear implants).   But most hearing people, either know someone who is losing their hearing or will even themselves lose their hearing, just as a natural part of getting older.  So it’s kind of an important thing to talk about for everyone.

So since cochlear implants came up yesterday, when I took Mary for a “mapping”, let me explain them a little bit.  I already shared the video above that shows how they work.  But they also take some maintenance.

Here is a picture, from the computer screenshot, of what it looks like when we go to the audiologist for a “mapping”.  The picture on the left shows the shape of the actual implant part that is inside our head (underneath the scalp, but nesting in a little crater carved into the skull).  The picture on the right shows the tiny thread of electrodes (numbered) that are pushed into the cochlea to bypass the part of the ear that doesn’t work.   These parts are both inside the head, and do not come out without surgery.  They also cannot be replaced without surgery.

The part on the outside of our head that you can see is called the “processor”, which is the computer that picks up the sounds from the microphones and sends it to the coil that sticks to our head by a magnet to “talk” to the implant inside our head, like in the video above.

Anyway, each of those numbers of the “array” inside the cochlea represent a different frequency.  So some are working to “catch” high sounds and some “catch” low sounds.  These get interpreted into digital information by the computer processor (outside part on the head) and sent to this array, which sends it on to the brain as digital information.   So it’s not the same as just amplifying what everyone hears, like a hearing aid.   It’s like listening to sound through a very limited but incredible computer.

Here’s what it looks like inside the head:

I can’t even look at that picture, because it makes my ears hurt.  Real or phantom pains, don’t know.  But I cannot think about things shoved in my ears and just stuck forever without being able to get them out.  I cannot be conscious of that because it would make me nuts.

But most of the time, you don’t even think about it, like not feeling your socks until they get stuck between your toes wrong.

People who get cochlear implants are either people who have not heard before, and want to try them, and so have to learn how to hear…. or they are people who have heard, lost their hearing, want to hear again, and now have to learn to hear digitally.

Either way, there is a HUGE learning curve, that takes years of practice, which is why so many people quit trying before the cochlear implants are very successful.  Because it really takes a lot of work.  And it’s kind of terrifying, but we will talk about that in a minute.

To learn to hear digitally, whether you knew sound before or not, you have to have the cochlear implants “mapped”.  What they are mapping are those electrodes, meaning how much sound the electrodes send to the brain and which sounds the electrodes send to the brain.  They do this by plugging in the outside processor into the computer, to show the settings of each electrode.

Each electrode shows up as a “channel”, just like if you had a sound board at some music event with microphones or instruments on the different channels.  Each channel is a different frequency of low or high sounds.  This is incredible technology, to get so many in there, even though it is still nothing like the way hearing people can hear 20,000 frequencies.  Getting up to 16 or 22 is really kind of a big deal, but obviously nothing like actually hearing.

There are two things they test for in a mapping, and adjust for as best of a listening experience as possible.  For one, they test basically how much of that frequency you can handle.  It’s more than just how loud, but I don’t know how to explain it.  But making sure that when that frequency is loud it doesn’t hurt or isn’t painful is part of the process.  The other thing they adjust for is what is the very softest a sound can be and you still detect it that sound happening.   This gives you a range for each frequency, of how soft a sound can be and you notice it to how loud it can be before it hurts.

That doesn’t mean loud sounds don’t hurt.  It was two years before the sound of the toilet flushing, the dishwasher going, or the garage opening didn’t make me throw up.  Kyrie or Barrett screaming still makes me knock my implants off my head sometimes, if it happens suddenly or unexpectedly.  Fire alarms or ambulance sirens sting, no matter what your settings are.  Those are extra loud sounds, and it just is.  Sometimes my children are so loud, that it all turns to static, and I get super anxious and flustered and irritable because of that Deaf anxiety like in the video above.

But mostly, for normal everyday sounds, these settings from the “mapping” are what makes cochlear implants as comfortable as possible with as much quality sound as possible, for a good listening experience.

Getting a “mapping” happens pretty frequently when you first get cochlear implants, because they don’t turn on all those channels at once.  You have to kind of work up to it, learning to tolerate it, and get used to what all the sounds mean.   So in the beginning, it’s a mapping every week or couple of weeks for a while.

Each  mapping takes about two hours or sometimes three.   It means sitting there, listening to beeps on one side, then another.  It goes on so long that your brain just starts hearing phantom beeps, whether they are happening or not.  It’s kind of a trippy experience, but not necessarily unpleasant.

Now Mary and I go for mappings about every six month or so, just to fine tune the sound we are hearing.  Sometimes we try a new map, and it doesn’t work for some reason, and so we go back to the previous map for awhile before trying something new.  I still cannot handle the two highest frequency electrodes, so have them turned on for a backup map on another setting.  I can practice when I want, but just push a button when it is too much and those turn off.   It’s kind of amazing.

But it’s not the same as real sound.

Here is a video people ask me about a lot, that shows what it is like to hear with cochlear implants.   The same clip is played over and over, but you hear what it is like with more and more channels.   The first clip is like when you first get cochlear implants and only have a few channels turned on, and then the next clip is like when you have more channels turned on but are still learning sound, and then the next clip is with all channel turned on (I don’t have all channels turned on) and better at learning sound, and then the last clip is what it is like for hearing people.   There is an example of talking and an example of music.

 

I wouldn’t wish it on anyone.  It’s that hard.  It’s that brutal.  It’s that terrifying, even now sometimes.

But it’s also amazing – as a tool – and an incredible gift for which I am grateful.

But even then, that doesn’t detract from my love for sign language or my culture, and that’s why it is so important to us that Mary and Kyrie be at the Deaf school where they will get to experience those things from so early in their lives.  It’s a beautiful thing, ASL, and there is power in silence – even for hearing people.   There are things I know and notice, feel and ponder, and experience in the world around me that I never would if I heard perfectly all the time or worse my cochlear implants all the time.

Now, if my hair would just grow back from chemo a little faster, I wouldn’t look quite so much like I just escaped the Matrix.

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Last night we had Thanksgiving with Nathan’s family:

These are normal moments: worn out grandparents, exhausted parents, happy cousins (except for when they are not), delicious food the gtube kid just picks at, and everyone barely to bed on time – only settled down by too-early Christmas music, with all the fun songs played first to match their mood and then slowly settling down with calmer and softer songs until they fell asleep on accident.

They slept late this morning, the one day we had to get up, of course! But we did get them up and around in time for breakfast… just in time to see all the snow! We had a very cold day of appointments!

Today was a big day.

We first saw our counselor, everyone as a family, for a bit, to check in after biological family visits yesterday and in preparation for Kyrie’s palliative care meeting.

All six children had opportunity to talk with the palliative care team counselor privately and together as a family about their feelings, about their experiences with her hospital stays and ambulance rides and medical incidents at home. They have also talked about what they want their time with her to look like, and what kind of funeral they want for her to have when it is time. They also explored at length what “quality of life” means to them, and to her. It was really good!

They understand she has some very good days, but that she is still very medically fragile and that when we lose her it will likely be a sudden thing rather than a decline. They also showed them this chart to explain the chronic death trajectory prognosis (item d on the chart):

We are so glad, though, for every moment she is with us, and that we have had her longer than we ever thought we would. She is such a feisty spirit, and making it to three and a half means we have gotten to see her little (very big) personality evolve. It’s so fun (most of the time) to get to know her as a person!

We also saw my oncologist and Sjogren’s doctor, to whom I had to again explain why I don’t want to be on pain pills, but got new eye drops so they won’t feel like sandpaper and hopefully I won’t lose my eyes.

They are watching the pressure and the infections and we will just “wait and see”, they said, as if waiting to see wasn’t why I was there for an appointment.

I need to be able to function, though, enough to use my phone and computer to work.

We have found a little ball in physical therapy that helps my feet enough I can walk more easily.

I could do more aggressive IV chemo, but it would change my prognosis. I could do some lighter oral chemo, but have to keep repeating the cycles like this summer. We will talk about it. In the meantime, I still drink my juice, take my (non-pain) medicine, and argue with them about steroids. Steroids make me feel so crazy, and swell me up so much, and it is so annoying that five years of cancer has changed my body so much, caused our miscarriages, and now leaves me trying to function through all the chemo damage like neuropathy and hair that doesn’t seem to grow back fast enough (I look like my brother!)

But all of that doesn’t matter when I am just glad to be alive.

My doctor has never had an ovarian cancer patient live longer than five years, so that is something special, he says.

Great, I say, shrugging my shoulders, because it’s not like I signed up for this contest.

But even that, though, seems to fade in the background when we are fighting for Kyrie’s life.

At her appointment, we looked at her most recent results of her clinics and tests from Kansas City, as well as the lab work from last week when she stopped breathing in the night (longer than a usual apnea episode). We also got her into the JAWS clinic (she has already been to the cleft clinic) in Kansas City so we can get a new sleep study scheduled to see if a BiPap would be better for her at night, and a new swallow study to see if we need to increase suctioning machine or adjust her meals or tube feeding at all.

They set two goals:

1.) to keep her comfortable, and

2.) to prevent incidents that put her at risk of illness or sudden death.

But we also had some good news, considering.

She is on the growth chart, barely, but on there, at 27 pounds! We will take it! This is so great, and every ounce gives her an advantage.

All parents know what it means to feed an infant every two or three hours when they are first born, and that’s what our life is still like with Kyrie, even though she is nearly four. She gets to try to eat, after being NPO (nothing by mouth) for all of last year, but she still has dysphagia (trouble swallowing) and relies on the g-tube for complete nutrition.

She also still uses all of her calories for breathing through her restricted airway, so needs additional calories just to get enough in her each day. We use the g-tube for the bolus feeds to be sure she gets enough. This means measuring how much she eats of what and counting every calorie to adjust how much goes in the g-tube to keep her growing.

Comfort care for her also means oxygen at times, even when her sats are okay. She shows she needs oxygen when she becomes fatigued, or her color changes (cyanosis), or her behavior changes to account for hypoxemia (not enough oxygen), or irritability goes up because she doesn’t feel well from not having enough air.

Often her heart rate goes up too high because of her changing oxygen, which causes other problems. Her heart working too hard and getting too big from having to adjust all the time to all that is cardiomegaly, which leaves us fighting heart attacks and strokes.

She’s a hot mess, this one.

But her feisty spirit has kept her going, awakened her from coma after coma, and pulled through one miracle after another.

And through all that is her pediatrician and those nurses and that staff we love.

I used Kyrie’s own list of things to talk about to post the update:

When you are three and a half, it’s important to have a friend who really listens, but also gives it to you straight. You need to be able to discuss all things of most importance: how palliative care busts you out of the hospital, how not to break a rib during CPR and what to do when it happens anyway, which ambulance drivers you like best, why you want cupcakes at your funeral (and your birthday, if that comes first), how to jump rope with oxygen tubing, who had the best Halloween costume, and which necklace goes best with your sweater.

The big discussion today, beside funeral cupcakes, with the palliative care team, was whether or not she and the other children could stay in school for the winter.

But, her labs show an immune system doing better than last winter, though it still takes her twice as long to recover from whatever bug she catches from us.

And, the whole idea of palliative care is keeping her comfortable and managing her quality of life, so what does that mean to her?

But Kyrie is so bright, and very much able to express herself. She was able to verbalize why she loves school, and why being at school is “normal” and “quality of life” for her, and how being at school helps her “play with friends instead of think about being sick” and “school makes my brothers and sisters happy” and “all our teachers love us so much” and many other similar comments… so the team decided that for now, her quality of life being in school outweighs the risks, especially since her trajectory is chronic death anyway.

This means she and the other children get to stay in school for now! She is so excited! They are thrilled! We love their schools so much, and are so happy they get to continue studies in these healing environments that have been so good for us as a family.

That’s how we head home tonight, on roads as cold and icy as the last four or six years have been, but safe and warm in our van, our home, and these schools.

(Poor Anber, seat belt blocked from the photo!)

It was a big weekend.

It was a long day.

We had hard discussions.

But we are a family who does hard things.

We are coming home to more things: new sensory therapy for Alex, new audiologist for Mary, and facing the neurosurgeon with Kirk for his shunt. It’s time for Barrett and Anber to face the consequences they chose for almost burning down our house last week – I will tell the story, promise!

And once again, we bring Kyrie home with us, instead of living at the hospital. Tomorrow she returns to school after missing almost a week. We go back to showing up every three hours in her class to do her feeding tube and oxygen.

These are the days for our family, hard days, but together days.

This is life for our family, with sufficient for our needs because of miracles from so many angels all around us.

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We had some serious drama yesterday morning, before we ever even got to breakfast.

The short story: Anber and Barret got caught lying, and our house almost burned down.

The long story I will share another day, but everyone is okay, and I promise to tell the story.

It matters, though, because it meant we were late getting on the road to Oklahoma, where we hoped to be in time for the football game, which is – of course – more important than anything else, right?

But once we were finally safe, and everyone was loaded up, we were glad to be on the road and headed back “home” to Oklahoma.

I am (kind of) teasing about football.  Saturday is a work day for me, since I take Sundays and Mondays off, so there was not much football, anyway.  But we caught the tail end of it!

On our drive, we stopped halfway at our favorite playground, ate lunch from home in the car to stick to our budget.  We dropped our things off at the hotel, setting up beds and getting out pajamas, so that when we got back to the hotel everything would be ready for us.  Then we rushed over to surprise the grandparents with our very grand entrance that mostly was just jumping out from around the corner and screaming SURPRISE!   Except that grandad was unloading groceries from the car when we got there, so he caught us, and then it was Aunt Alicia (Nathan’s sister) who opened the door, so our surprise was not quite as planned… which, you know, is not surprising.  But everyone was delighted, and the children were excited to play with their two little cousins while I went back to the hotel to work.

And maybe watch football.

When it was time for dinner, I picked them up so Nathan could stay and visit with his sister.  The children were super excited for pizza, claiming “very perfect behavior” at the grandparents.  No doubt.  We at the pizza while watching the end of the game, and then did the most important hotel thing of all: swimming.

Anber and Barrett did not at all complain or throw a fit about missing swimming, and I was really proud of them for that, because I know that was hard.

But so would be not having a house to live in.

I can’t tell that story today, though, because I have to tell another one first.

We enjoyed visiting our previous ward in Bartlesville, and getting to go to church with the grandparents and Aunt Alicia’s family.

But then we had to leave, to go to the children’s visit with their biological families.   We met in the library this time, since it is too cold for a playground (and a Sunday).  Like always, Mary’s parents were both in jail again, so she and I had some special one on one time together.

Like always, Alex’s dad came:

And like always, Kirk and Barrett’s mom came:

But what was different about this visit is that for the first time ever, Anber and Kyrie’s mother joined us:

She got out of prison early this summer, and transferred to a treatment program to finish her time.  Anber and Kyrie and I discussed it at length, and Anber wrote out a list of questions she wanted her mother to answer about what happened to them.  We went for the big family session at the treatment program, and the visit was alright, as much as the first visit in four years could be, but her mother didn’t answer any of the questions Anber asked.   So Anber pestered me about that until I finally called her mother out on it, and that’s the story I have to write about today.

Because she sent us a letter, through her therapist, about a month ago.

And I had not responded.

Partly because Make-a-Wish, partly because my eyes have been so bad, but mostly because it is hard.

It is hard to face the woman who did what she did to my children.  It is hard to face the woman who made Anber so skittish, so disorganized, and so afraid of new people.  It is hard to face the woman who neglected Kyrie and her sister until the twin died, who made Kyrie fight for every breath and endure all she has, who refused to sign consent for Kyrie’s first round of surgeries until it was part of her plea deal… but then still refused to sign for anesthesia.   Who does that?

An addict, that’s who.

And addiction is really, really hard.

And addiction is really, really complicated.

Addiction destroys the user, but also nearly everyone around them.

And clinically, I know that.

So that gives me a filter, enough so that somewhere in me there can be some compassion for her, even for her efforts at healing.

But more importantly, she could have quit, or given up, or aborted her pregnancies, and she didn’t.

She did give them life, the best way she could, and she is the mother of my children.

She is their mother, in a different way than I am, but those girls love her with their whole being.  They miss her.  They mourn her.  They yearn for her.  They will always need her.   They are a part of her, and she will always be a part of her story.

So yeah, it’s hard.

And yeah, it feels like starting over again, when we have made so much progress with Alex’s dad and Kirk’s family, and Kirk and Barrett’s mom.  It used to be this hard with all of them.   But slowly, over time, we learned to trust them just as much as they learned to trust us.

That might surprise you, that they have to learn to trust us.  But for all they care, we are the couple who stole their children.  I mean, they get it, but still.

It’s hard for all of us.  That’s the point.

But the children?  We share the children.

And the children need these visits, developmentally and emotionally and for attachment development, as long as it is safe to do so.

And for Anber, part of her feeling safe was getting some answers to her questions.

And now she has them.

Their mother wrote two letters, actually.  The first one was to both girls:

Anber and Kyrie,

I want you both to know that I had so much fun with you at our visit!  I have missed you both so much, so so much.  I love you both and that has never stopped.  From the moment you both were born, I have loved you more than anything in the world.   I’m so sorry I’ve had to be away for so long.  It has not been easy being away from you two.  But I had some things to work on and fix about myself so that I can be a better person.  Even though you’ve moved to a different state, I still want to be close to you.  I want to get to know both of you, my beautiful daughters.

I love you both. Always. Forever.

Mom L.

So.  There is it is.  The last of the illusion that I am there only mother, while I have to share all the other children.  Because no matter how hard it is, or how much work it is, the right thing to do is to let them know their mother.

We have to be safe, yes.  We have to be careful, yes.  It is a lot of work, both for her and for me.   But it is the right thing, if nothing else because I would rather help them through this process of their story than them being stuck with it on their own when they are young adults suddenly on their own.  It is their story, and they have a right to know it.

That’s what Anber said, when she wrote her letter.

And here was her mother’s reply, which Anber asked me to include here so she can reference it later when she grows up:

Anber,

I have wondered for years if you thought about me as often as I did you, or if you remembered how much I loved you.  I have loved you all your life.  I planned on watching you grow up, and spending your whole life with you.

My choices are what led us here. To this moment.  I want to answer some of your questions my little one.

You asked me why I did drugs. At that time, I had a lot of things that I needed to work on, and I used drugs to try to make myself feel better.  But they didn’t do that.  They were the main reason I wasn’t able to keep you with me.

Your next question asked if I will come to visits and play with you.  My love now that I am allowed back in your life, I will stay as long as you will let me.

You said you remember I didn’t always come to the visits.  When I didn’t come, it was because I couldn’t.  I got into trouble that made me go away.

Please believe all I wanted to do was get you back.  All I wanted was to hold you in my arms and not let go. But I kept making wrong decisions.

You asked if I was in parent school, yes honey, I am in a program to fix the areas of my life I had trouble with.  I am in school to have a really great job too. 😊 The place I’m at right now is helping me fix the consequences of my choices and help create a better life for myself.

You asked if I missed you.  Anber I have missed you every second, of every day, all of your years on earth.  More than you can know right now.

You asked if I know that you are adopted and yes, I do.  I’m sad that you can’t live with me anymore because I love you so much, but your Mom Emily is so amazing and I know she loves you very much little one.  She is the greatest and I’m so thankful you have her.  Because I wasn’t there.  You will have a full and wonderful life with her and that makes me so happy.  You and your sister are blessed, and so very loved.

You asked if I still love you, and I need you to know I will love you forever. And ever. And ever.

You asked if we can take pictures together, and I would love to take pictures with you whenever we can see each other.

You asked if I know that you are proud of me for trying so hard, and I want you to know that it’s the best feeling in the world to know that you are proud of me.  Anber I am proud too. I am so proud that you are my daughter.  I am so blessed to be your mom.

Your final question asked if I will say sorry to you.  Yes Anber.  I will. I am sorry. I have been so sorry.

I should’ve been there and I wasn’t.  But I’m ready to be there now. I’m here for you to talk to, whatever you need, you have me for life.  In my heart, you will always be my baby.  The one I brought home from the hospital.  The one who held my hand as we walked through the house.  The one who’d laugh with me as I chased her up the stairs.  These things I’m sure you don’t remember, but I carry those memories forever.

You have never left my heart.

I love you Anber. Always. Forever.

Mom L.

So there it is.   Not a monster, but a mother, and one who has grieved.

I know letters don’t fix everything.  Anber knows it, too.   Kyrie was just delighted to get mail.

But it’s a start, and a start of something that will heal them, even as they piece together the hard pieces of their past.  This is healing work that can start now, instead of on their own later.  This is grief we can acknowledge now, instead of bottling it up and not speaking of it for years.   This is part of what it means to raise other people’s children: they will always have other mothers, and other fathers, who were there first, no matter what happened later and no matter how good of a job you do now.

But here’s the thing.  It’s all love.  The other parents made mistakes, and were in hard circumstances, and struggled to fix their problems in time to still get to keep their children.  All of that is true.  But it’s also true that the choices the children’s biological families made, or the circumstances they were in, has nothing to do with how much they loved their children.   Their families love them so much, so entirely, and I want my children to know that.

They need to know, not just because there is so many people out there who love them.

But because they make mistakes, too, like almost burning down our house (I promise I will tell that story soon), and we still love them.

They are not their behavior.

They are fierce spirits who have endured much, stuck in tiny human bodies with much to learn (just like me), but still are good and noble spirits who are children of God no matter what.

And if that’s true, if I truly have a testimony of that, then it is true of their parents, too.

And I want these kids to know that.

And so we visit, when it is safe and appropriate, with plenty of breaks for recovery between visits and not having the next one until every single one of them is ready, and every once in a while we call, and always we save school papers and class projects to share with their biological parents… because parents.  Because love.

And having their biological families in their lives to also love them does not take away one ounce of the love we give them.  It’s not a competition.  It’s a story.

And it’s their story.

So this is our story, because love.

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While I don’t really think jinxes are a thing, I know enough to know you aren’t supposed to do it.

You don’t go on shift when you work at a hospital, and comment about how quiet it is, or else things go crazy and suddenly it’s a full moon.

You don’t mention at an elementary school how healthy everyone has been, or else all the sudden everyone is passing around some bug that’s bad enough to make you stop touching your own children for seven to ten days.

And you don’t, definitely don’t, ever – never ever – post a blog about how everything is so good and calm and restful and your daughter who hasn’t died yet is doing so well and seeming so stable.

You just don’t.

Because that’s when everything falls apart.

Kyrie started coughing at school yesterday, did not recover well from her little field trip where she struggled to have enough air for a small nature hike, and then was in crisis last night.

It’s been a minute since Kyrie was in crisis in the night.  We are in a good rhythm with her, and know how to prevent so much, and can manage her airway in the ways that seem to work for her.  But last night alarms sent us running up the flight of stairs in the dark.  We scrambled over dollhouses to get to her, and begged God for a heart beat before starting rescue breaths.

You know it’s a good day when you have a heart beat.

Mary wears an eye mask on her face because of the lights on Kyrie’s machines at night.  She is Deaf, obviously, and so at night her cochlear implants are off for charging, and she hears nothing.  But still, we know how to do CPR in the dark lighted only by the flashlights on our phones, the way some parents are good at exchanging quarters for teeth under pillows.  The other children sleep through ambulances because it’s as much a part of their normal dreams as bicycles and volleyballs.

There was a season when an ALTE (apparent life threatening event) meant a week or two in the hospital, but now they know Kyrie and we have learned her mysterious ways, and it’s nothing but a quick check for pneumonia, some time for observation, and a virus panel to see what’s cooking.  Being on palliative care helps that, too, since her orders are about keeping her comfortable, coordinating with her pediatrician, and minimizing hospitalizations (which actually keeps her healthier and prevents her from getting infections or viruses she would be exposed to there).  Her good days are so good, and her “normal” moments look so “normal”, and her busy-silly-goofy moments look so… three-year-old, as much as any.  It is so deceiving, albeit a gift of days and moments we never thought we would have, but always we must be ready, and always we must be vigilant, and always we must be watching.

She will, one day, so quickly and easily slip away from us.

And yet, for now, she is still here, bouncing back when they say she won’t, coming back time and again as if she is boss of the world (she is) and just stepped out of the office for a moment and has come back with new assignments for all of us.

Sometimes she brings back messages, stranger than any jinxing superstitions.  They are sometimes from God, or from my (deceased) parents, or from others she has met.  I think that’s one thing that knits her and I together so closely: we’re not always sure which side of the veil we’re on.

By morning, her only concern was that her belly hurt where her g-tube is, and we think it is sore from the coughing.  But we changed the tube a week early, just to be sure everything looked okay.  Whatever it was, it seems to be better this evening, and she isn’t complaining about it anymore.

Not feeling well, she spent most of her morning laying on me or crawling on me or bring toys for me to hold while she got other toys to crawl on me.

We were both tired from the night, and so we napped in her bed, snuggled up with giant teddy bears and a pile of blankets.

Her sats were better today, and she seems to be breathing as best as she ever can, though her cough is persistent.

I left her at lunch time, to duke it out with Nathan about whether or not she was going to take a nap, while I went to do the IEP for this guy:

His teacher took that picture of him fishing on a field trip recently, and I love that smile!

Turns out, Alex still has autism.

So.  That’s a thing, which we knew.

But it is fun to see him doing well in ways they said he never would – like reading, which he’s gotten really great at, so much so that he’s been pulled out of the special education reading group.  He was so disappointed!  He said to me, “these are my friends, mom.  I may never get to see them again.  And what if they don’t let me read now?”  His teacher and I reassured him that he still gets to read, but he graduated from group and doesn’t need help with reading because he is doing so well.

And, you know, his friends he will never see again are the same ones from his grade that he sees all day in class, and at lunch, and at recess,

It’s not a crisis, Alex.  Your sister not having a heartbeat?  That’s a crisis.   You graduating reading group?  Not a crisis.

Thanks, mom.  I didn’t know.  When I don’t know, then I don’t know which emotional response to find.  If I can’t find my emotion, then I don’t know which face to put on.

Just your face, buddy.

Then he gives me that smile, the one that can charm the pants off me even when I know he’s as guilty as sin.

He’s a punk.

His funniest thing right now is working really hard with Nathan on metaphors and similies…. except he keeps calling them smiles.  I don’t know if it came up because of something between him and Nathan, or if it started at school, but Alex is trying really hard to think of puns and notice metaphors when he comes across them.  We talk about them a lot, because those kinds of idiomatic expressions do not translate into American Sign Language, either, so we can play with phrases and give double meanings a lot just to make things funnier.  We may really just be confusing the child.

He’s definitely confused about math.  He can be really good at one piece, but then when we go do something else, it’s like we never did the first thing.  He can either add OR multiply, for example.  But fourth grade is kind of all about doing both, in a particular order, in the same problem.  He and Kirk are both struggling with word problems, and it’s become pretty clear that maybe this is less about autism or cerebral palsy and more about having writers for parents.

I’m a therapist, so I know everything is always the mother’s fault.

Especially math struggles.

So now, instead of just math facts at dinner we are having to make up word problems to talk through and help the children think.  We try, anyway, but it usually gets off track pretty quickly because instead of solving the math question, everyone wants to analyze what’s happening in the story and why and what the character motivations are… because children of writers.

But mom, in real life we don’t need to know how many apples the boys and girls had together.

We just need to know if the boys asked permission first.

That boy cracks me up.

But he’s amazing, and has come so far, truly.  He’s doing more than they told us he ever would, and he is genuinely trying (except for when he isn’t), and so eager to do good even when he is a hot mess.

That’s a metaphor, mom, because I am not actually hot.  Unless you mean cute.  I am pretty cute.

He is so very easily distracted, and I am begging him to focus in class so we aren’t cornered into medicating him.  It would, in many ways, make life much easier.  But he was on meth for so long before we got him, from the very beginning, and had such a difficult detox, and is doing so well, that I am really concerned about how his brain and body would respond to any kind of medication from the stimulant family.

Maybe it would help, and I am neglectful for waiting so long to try.

Or maybe it would guarantee he’s an addict by age 12.

Or maybe they are all six going to have face those demons on their own anyway, and it’s not really my battle.  I cannot rescue them.  And they need to be able to function before they start self-medicating anyway.

Or maybe he’s just the charming distraction our family needs, and a perfect delight – even a comfort – entertaining us enough to forget for small seconds that Kyrie is fighting for her life, or that the doctor said I won’t survive another round of chemo, or that somehow the hard years behind us were at least years together.

Except, as good as he is at that, and as much as it is absolutely a gift to our family, it’s not his job.  It isn’t his job to rescue us from hard feelings about everything going on, and it isn’t his job to entertain us until we all forget how scared we are about Kyrie, and it isn’t his job to make everything okay.

That’s too much pressure for a little boy.

But he’s also maybe the only person on the planet who can make me laugh until I cry.

Except for how Anber walks into a wall at least once a day.  That’s pretty funny.

But it means that when life gets hard, like in math at the end of the day at school, there’s no room left on that stress thermometer for him to deal with it.

It means that in the quiet moments when he is alone, or when something little goes wrong, or when he thinks he failed in some way, our sweet Alex cries.

And I don’t know how long they have to be adopted to believe they are safe now, and won’t be in trouble for normal mistakes that are a part of the process of learning, and that they can make mistakes without being in danger.

And I don’t know how long we rest in this beautiful place, where it actually snows, where the children have what they need in school, where we have friends as a family, where we are all actually happy, for that to be enough rest and healing for all of us to be okay again after everything we have been through.

And I don’t know how to bulk up the level of safety and comfort and strength and endurance and healing enough to make them be able to face what looms before us, with little girls who can’t breathe and cancer that won’t go away.

I can’t make these kids, or Nathan, go through anything else.  It’s too much.

So when I plead with God for air for my daughter, and when I beg for Hezekiah years to grow my children, it’s not because I am afraid.

It’s because these precious spirits have borne so much on their shoulders already, carried so much in their hearts already, endured so much already.

People hear our story and comment about what a miracle Kyrie is.

It’s true.  She is.

But so is Alex, who makes us smile in impossible circumstances.

And Kirk, who sets the table without being asked while we change out the oxygen tank.

And Barrett, who tolerates a sick threenager without question, no matter what baby doll dress she makes him wear.

And Mary, who makes sure all of them still play like the children they are but have never gotten to be.

And Anber, who asks the questions no one else dares to say out loud.

They are my miracle babies, these who have come to form our family, even if it is a family who does hard things.

Alex and Kirk decided to skip special chorus today.  They came home, both of them with silent tears, because they were afraid they will get kicked out.  The big school musical is coming up, and they are so excited for it, and felt today they had sacrificed it.  Because it was snowing, I waited in the van just across the street so they didn’t have to walk home in the cold.  I was surprised to see Alex and Kirk, and asked them why they weren’t at choir.

Alex said, because, Mama.  Kirk and I did not want the little ones to walk home in the snow alone.  We wanted to be sure they were safe.  We’re a family.  And we’re in this together.

I tried not to cry on the way home, that short drive just around the corner.

And that’s not a metaphor, Mama, because I literally mean it.  We’re in this together.  You know, in the van.  We are in the van together.  You see?  So it’s not a metaphor because it’s really happening right now.

And then I snorted.  Because this kid cracks me up.

Kyrie was waiting for us at the front door, watching the snow, waiting for the other children to come home.

They bounded up the steps, ignoring the excitement of the snow, wanting to be sure Kyire was okay.  They were all surprised to see her, thinking she would still be in the hospital.  Kyrie hugged each of them, and they all petted on her and oooo’ed and awwwww’ed over her.

And then Alex, being Alex, stepped back outside before I could stop him, scooped up some snow, and ran back inside and threw it on the living room carpet.

Kyrie, do you see this?  This is snow.  SNOOOOOW.  Can you say snow?

Kyrie bent down to touch the snow, and I bit my lip to keep from correcting Alex for dumping snow on the carpet.

Because this is palliative care.  This is quality of life, right?  And not just for Kyrie.

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Last week, in between runs to Kyrie’s school for her nursing care, I stood in my kitchen laying out freshly washed gtube pads to dry.

It is a new life, now, being home with my babies finally again. I treasure the mundane things I have missed: cleaning the kitchen, picking up the house, keeping laundry going, making dinner, and helping with homework.

I don’t take for granted the being home to touch their sweet faces, tickle them and chase them, pet their hair, and squeeze in all the snuggles I can before they are too grown up and cool to sit with me in my reading chair.

And this year, they have made it in the school year longer in public school than any year since Kyrie was born.  We don’t yet dare to hope, any of us, that this will last all winter or all school year, and they still scamper off each morning knowing it might be their last day.   I remind them, then, not to take those moments for granted, either, and all of us are far better at living in the present than we ever were before she was born.

That’s why, when I stood in my kitchen, staring out the glass doors to our deck and into the fall leaves of the trees in our backyard, I knew I didn’t want to miss this.

I have been inside hospital walls for three years.

The moment Kyrie was born, I was whisked away from life as I knew it, and stuck inside hospital walls until last year… and even then, as I returned to work, my days and nights were still in hospital walls, either for her or for me or for my work.

It’s been a long time since I was outside.

I realized it at the end of this summer, when we moved and I was still driving to Tulsa, and I began those early morning drives soaking in all the green on my way.  There was so much green!  The fields were so open, and the morning fog was so beautiful, and I wondered how long it had been since I had relaxed that much to breathe that deeply.

But even then, I was still in my car, and there was no time to stop.

We were in survival mode still.

There is something about palliative care that helps you relax.

There are hard conversations, difficult decisions, and a learning curve about preventative and comfort care.  But once it is all figured out, it is kind of like stepping off the diving board, and there is this letting go that happens, and you just fall.   There’s no more ladders to climb, and no more fight left, and no more fear: because you have faced it all.

Kyrie is doing well, compared to where we have come from, and it’s only five months until she turns four.  They said if we can make it to four, she has a chance at childhood.  She is still on oxygen, still dependent on the g-tube (though doing well at oral feeding and working hard at swallowing), but she is active and busy and happy.  She is learning to discipline herself, regulate herself, and respond to correction like any other little three year old.  She is smart as a whip, extremely verbal, and so expressive.  She soaks in everything, misses nothing, and puts all of it into song.

She is alive, and she is living.   It’s a new place for our family, as we let go of our role as keepers of Kyrie, and she becomes old enough to voice her own preferences and needs and find new ways to meet them herself (which, really, she has always done so well in her own way).   It’s a new place for our family, for the focus to shift back to “normal” family things like homework and reading and math facts, even if we always keep one hand on oxygen tubing.

I cringe less now when she barrels down the stairs on her stomach, because I understand now she somehow knows how to tilt just right to avoid snagging her g-tube on the steps.

I don’t startle so much when she falls to the ground, because I know she is using her behavior to pace her energy and breathing, and that she can manage it on her own.

It’s no big deal to watch her wrestle for her turn at the water fountain, because I see she is mostly copying them and manages her airway herself.

We are not careless.

We are still vigilant.

The oxygen is still by her bed, with pulse ox cords plugging her into the matrix at night.  The suction machine is always within reach.  My counters are still littered with syringes and little blue tips and packets off formula for her gtube.

But what we pay attention to has shifted to shapes and letters, fingerspelling and storytelling, learning new games and playing outside.

We still watch the color of her lips and hands out of the corner of our eyes, but we don’t have to hover anymore.  Usually she will tell us, because she knows.  Sometimes the children notice.

But mostly our faces are turned back toward the other children, with life back in balance again, taking turns with each of them for small moments of one on one time amidst the chaos.  There are five spelling tests to practice for each night.  There are five reading out loud “minutes” to get through each day.  There are five sets of piano practice to get through, and four sets of violin practice to get through, and six backpacks to check every afternoon.  There are six turns to take at helping make dinner, twelve chores to do each night, and six little prayers to say at bedtime.

And then there is us, me and Nathan, left together at the end of the day once dusk settles.

We have been torn apart since we were married, through one crisis or another, and because of the years in hospitals – whether because of Kyrie, or me, or the call to chaplaincy.

But now we are home, together.

Nathan is working from home, writing lyrics everyday, working on two new musicals and other projects, finally free to create again after sacrificing so much for so long for us.  He has provided what I needed: a steadiness through these hard years, a commitment to anything needed for me or the children, and a faithfulness to God.  I am working from home, in private practice and counseling online, in the early hours before the children wake and in the afternoon before they come home.

The rest of the time… I rest.  I go to the gym.  I stop at Kyrie’s school to do her feeding.  I come home and clean up, me and the house.  I work some.  I sleep some.  I do what I can to recover from chemo and manage the pain of Sjogrens.   I meet the children when they come home, and we walk to the park before making dinner and doing bedtime.

Our life, which has been so hard for so long, is suddenly so simple and so healing and so restful.

I shared a couple of weeks ago during Relief Society (the women’s organization at church) about how we had done family scripture study with a friend’s family the night we had them over for bobbing for apples and hide and seek for Halloween.  Someone commented how “perfect” it was, and their family could never doing scriptures so well.  But I would argue there was nothing perfect about it, or us, other than the act of faith in us trying.

We are coming out of years of crisis, and it was our faith that held us together.  We are coming out of years of being torn apart just as we came together, and it was our nightly scripture readings over the phone or FaceTime that kept us knit together.  We are coming out of years of crisis, where our only hope were the words and blessings of God.  It is our habits of faith that held us together when life has been so hard, and it is the patterns found in scriptures that have led us to this season of rest (however short or long it may be).

But we are not perfect.

We are human.

We are humans with weakness, relying upon a God who makes weak things strong.

Nathan is tired and worn out after effectively single parenting for three years, while I was living in hospitals.   He has learned to be a father in ways he never would have if I had been home all the time, and I am in awe at the progression of his self in the process.  But he is a man who openly struggles with depression, and works hard to manage that in the middle of all that goes on in our family.

I am exhausted from cancer and Sjogrens these six years, and with that immediately following the deaths of my parents and our miscarriages, but fostering happening in the middle of it all.  I have very severe social anxiety, and am for the first time in a very social ward at church.  I mean they have book groups and play groups and field trips and girls nights and craft nights and dinner groups and all these events and gatherings, which is great but overwhelming, and kind of bad timing while I have these little ones and cancer.  I have yet to be able to attend anything or participate outside of Sundays – and even just Sundays are hard.  I am slowly making friends, though, and love the people in our new ward very much.

I am just so tired.  Not like depressed-tired or withdrawn, and I am still interested and participating when I can, but I mean physically I cannot do a lot right now, and it’s hard to pace me.  The pain is terrible.  Sometimes I cannot walk.  Sometimes I really cannot see or have so much pain in my eyes that it’s hard to bear the light.  Any tolerance I can handle for my eyes is saved for my work, which I get through because my family needs that, but otherwise would be off the phone and computer entirely.  For the last week, I have been so tired I could not even blog, and am just trying to stay off another round of chemo and avoid an increase in steroids before my face and body swell up any more.

I have a really good therapist, and go every Monday to process everything I have been through these hard years.  I might be in therapy forever.  I’m a fan, you know, of therapy, when you can find a good therapist.  It’s not just because I am a therapist, but also because everyone has been through so much in their own way.  Nathan has a therapist, the children have a therapist, and I have a therapist, and we have a therapist for the family as part of the palliative care team.

That’s how not-perfect we are, how human we are.

Mary is on the cusp of adolescence, torn between a girlhood she only got to enjoy at the last minute and the intriguing but unsure teenage years that lay before her.  Alex is so good at being Alex that he is still himself as his adolescence unfolds, as if he has somehow already been an adolescent this whole time.  Kirk is entering a phase in his life where his strengths are not appreciated developmentally by his peers, and so he is torn between who he is and who he thinks others think he should be, and trying on different faces to see if any might fit better than his own.

It is a fascinating time, watching them grow up, these babies who were my first grade triplets only yesterday, and now are nearly halfway through fourth grade and all of them crashing into the double digits like ten is the new thirteen.

Anber and Barrett are my challenges right now, worrying me in different ways.  Barrett is about half his age emotionally, which means he is sometimes twins with Anber and sometimes twins with Kyrie.  He still has screaming tantrums that go on for hours, and so our little life that has such sweet pictures is often set to the soundtrack of how we are going to be stabbed in our sleep or our beds set on fire or how we are the worst parents ever.  Saturday night was worse than it has been in ages, climaxing in Barrett tearing up his room, destroying his things, and throwing half of it into the living room.  This, unfortunately, he learned from Mary, who holds in all her hard feelings at lets them out twice a year in an explosion of rage that you would never expect from such a sweet creature.

We responded by removing everything from his room that could harm him, making dinner for everyone (including Barrett), and letting him know he could join us when he calmed down.  It was a long night.  By Sunday, there was nothing left in his room and we agreed with him that it was not the safest room for him. He has so many times taken things from his siblings and hidden them in his room, stolen treats set aside for after school snacks, and wandering the house at night waking people up.  So we moved him out of his room.

Kirk, who initially wanted the attic room, had simultaneously decided the stairs were too much for him (which we had wondered, but wanted to let him try when he asked), was very excited to take the ground level room which is easier for his cerebral palsy.

That meant the largest attic room was now empty, but it didn’t seem fair to reward Barrett with that while Mary and Kyrie were sharing a smaller, regular size room.

So after church on Sunday, we moved Mary and Kyrie up to the attic room, which opened up their larger room with the flowers on thew all for Anber, who had been waiting her turn for more space.

Except we couldn’t move Anber’s room because she had locked herself out of it.   This girl.  My sweet girl with such a mean streak.  She is so disorganized in thought and presentation, not because something is wrong so much as her spirit doesn’t quite fit in her body.  She is forever running into things, knocking things over, and running into people whom she knocks over… we have had her eyesight checked, and her spatial reasoning tested, and she’s fine.  She just really likes to move her body, and moves quickly, and isn’t quite contained in her own skin.

That’s what happened when she moved a cot against the wall behind her door after playing hospital (which is how our children play house, where instead of feeding and changing diapers on baby dolls, they spend their time giving CPR).  I told her three times to stop running through the house.  Then she did it again, bolting out of her door and knocking into Kirk, who fell into the door and nearly squashed Kyrie.  They were okay, but in the process Anber also hit the cot, and slammed the door shut on her way out, so that the cot fell behind the door – effectively bracing it shut.

We tried everything.  There were no hinges on the outside of the door, so we couldn’t just take the door off.  We tried pushing things under the door to shove the cot out of the way or lift it enough to get a hand in enough to move it.  We tried taking the doorknob off, but the screws were on the other side.  We tried the window, which was not only locked but also painted shut.  We asked for help, and three others tried, everything, too.

Finally, our ministering friend came over and drilled a hole in the bottom of the door to get a metal rod through, and then cut a higher small square in the door to get another piece of wood through, and worked it together to get the cot lifted up and out of the way.   We finally got the door open, and I presented Anber for both an apology and an offering of gratitude.  Then I took the cots out of her closet.

Once that was finally done, we could move Anber into the waiting room that was empty where the other girls had moved out, and then finally, just before bedtime, got Barrett moved into his new room across the hall from us.

That was the hard thing to do.

The easy thing to do would be isolate him further, show him how frustrating the screaming is, and punish him severely for being so mean to the other children.

Except that’s not what it is about, or what he needs.

It’s about attachment, and being a three year old in a six year old body.

So we moved him closer to us, and had a Barrett intervention.   We kept him home from school on Monday, not to reward him for his bad behavior, but to regulate his emotions for him until he could.  We did therapy.  We did mirroring.  We lifted him back up into the safe place he has in our family.

And then we talked with him and Kirk directly, about it being their adoption anniversary, and how we didn’t get to foster them first, and how adoption is a great thing but also a grief thing, and how they fall apart every October when their adoption day comes around.  We talked about how loved they are by so many, and how being happy here doesn’t mean they have to stop loving their biological families.  We talked and processed and talked and processed and talked and processed.

Parenting is hard.  Parenting is exhausting.

Parenting well is harder.  Parenting well is even more exhausting.

In the end, Barrett had a bit of a breakthrough.  It was tangible.  It was like when he learned to read.  It took him ages to figure out how to read, and he fought it, and it was awful.  But once it clicked, he got it, and now he is very fast and very fluent and can read as well as the fourth graders.

This was a moment like that: it clicked that what he was feeling wasn’t anger, but fear, and that he could just say so.

And then he began to cry.

Big, gulping tears that were the tears of an infant in domestic violence, tears of an infant torn from his mother, tears of a toddler torn from his aunt, tears of a preschooler leaving his foster mom, tears of relief to finally be home.

And so last night, after family home evening, when he realized he was out of hangers but had two shirts left, which normally would of started a raging tantrum no one else even knew was coming, he recognized it as frustration instead of anger, and even had the insight that he was afraid he would miss dessert if he couldn’t solve the problem on time.

And for the first time ever, instead of screaming, he just sat down and cried.

And crying, in our house, is always okay.

Being angry is okay, too, but not screaming threats or breaking things, or hurting other people.

And because he was crying instead of hurting others, we could finally, after four years, reach out to him in a new way.

And we held him, and rocked him, but this time instead of fighting us, he melted into us, and cried and cried and cried.

And then used his words.

And then figured out his own problem.

And then fixed it.

And then smiled.

And then cried again because he was so proud of himself.

And so when it was time for bedtime prayers, we asked him to stand up on the pew, and we all gave him a cheering round of applause.

Because it was amazing.

All because of that stupid cot behind Anber’s door.

So we clapped for her, too.

And that’s how we deal with things at our house, when we are not so perfect, and so very human, and all of us need a break, and all of us need a little celebrating, and we don’t want to miss a minute of it.

Trick or Treat

The children had an amazing day, getting through homework well and right away without complaint:

Finishing chores without any whining:

And playing games quietly once they were ready for dinner:

It’s almost like they thought it was a special night or something!

It was Anber’s turn to pick dinner, so she and I made homemade chicken nuggets, and she and Papa made homemade French fries. It was a great cooking date! And super yummy, they said.

We did our family scripture study and prayer time, got everyone in their costumes, and added an Alice g-tube pad to Kyrie’s costume as a surprise:

We managed to get everyone ready and out the door just as dark settled in for the evening.

They had so much fun trick-or-treating! It’s fun to watch them grow and participate differently each year. It was Kyrie’s first year without oxygen and being able to walk with the big kids! She loved it!

We let them walk for an hour, with one small rest in the van halfway, and then cut them off at bedtime. But we surprised them with glow sticks to help make pajama transition happen quickly, and said our bedtime prayers to the flickering lights of excited children.

They each got to pick two pieces before bedtime, and were so happy to scamper off with their own little nightlights.

We have happy children tonight, and very tired parents! But I am relieved all my little chics are back home, safely tucked into their beds.

And no, you can’t sneak into the kitchen to eat candy all night, because it is hidden away for movie nights and after school treats, so don’t even think about it!

Halloween Costumes!

Halloween, for us, is a fun holiday about costumes and imagination and creativity.

Obviously, its history lies in honoring the dead, which our family does primarily through making genealogy research a priority – which is an extra huge challenge when all your children come from different families.

We aren’t into the spooky stuff, not beyond play, though we do play a killer game of hide and seek in the dark pretty regularly, Halloween or not.

We don’t buy into the commercialism, and give most of our candy to local non-profits.

But as a family where the husband/father is a theater man who writes musicals, Halloween is an opportunity for bonding and dress up and costumes!

Every year, our family is a book for Halloween. The children submit ideas on which book, and then we have a family vote. We do homemade costumes, don’t spend money on them, and put together accessories from the dress up and prop boxes we already keep for play.

It’s super fun, but is also one more way to build attachment with six children adopted from foster care.

It’s a fun activity that unites us, but still lets everyone express themselves as individuals.

The first year we were married, we only had Alex. He was The Pokey Little Puppy, which was his favorite book as a four year old.

The next year, we had Alex and Anber and Mary, and their favorite book was a giant zoo book about animals. They called it Noah’s Ark, but it was just a picture book about animals. We still couldn’t show their faces that year, but they were adorable animal babies.

(Alex was a cheetah, Mary was a Zebra, Anber was a Giraffe, and the dinosaur was a little sweet boy we very nearly kept but in the end, he got to go home to his Grandma.)

The next year Kyrie was born, and we got Kirk and Barrett. They were also old enough to help with the DIY costumes, and they were homeschooling for the first time because of trying to keep Kyrie alive. They picked Peter Pan that year, and we did the Steampunk version as it part of an art and science and history unit we did in their homeschooling.

Nathan was Captain Hook:

I was Smee:

Mary was the Tiger Lily:

Alex was Peter Pan:

Kirk was John:

Barrett was a Lost Boy (still very literally at the time):

Anber was Tinkerbelle, complete with a jet pack she made out of soda bottles and a belt:

And Kyrie was the mermaid:

We decorated our trunk like the ocean and made a bean bag with a blanket over it be the island where we laid Kyrie to breathe and rest while the others chased down candy in the church parking lot.

They all remember this Halloween because it was the first one with all eight of us together.

The following year was our year of hospitals, with my cancer back and Kyrie in the hospital time and again, selling our house, and living in the 800 square foot two bedroom house next to St. Francis while we fought for Kyrie’s life.

It was fitting that during this time, we read The Boxcar Children series to them, and that’s what they picked for our costumes!

It was almost a little too real, that year, but they were adorable and delightful.

Last year, we were officially released from hospitalizations, with me in remission and Kyrie let go on palliative care. It was good news in some ways, but difficult news in other ways. We retreated back to our Owasso house to regroup and get it sold for Kyrie’s medical bills, wondering how on earth we could ever meet the variety of special needs of so many different children. Our life together had been so difficult, but so wonderful, and it definitely felt like a series of unfortunate events, so, of course, we were Lemony Snicket.

Nathan was Mr. Poe:

Mary was Dr. Orwell:

Alex was Lemony Snicket:

Kirk was Count Olaf:

Barrett was Klaus:

Anber was Violet:

And Kyrie was Sunny:

This year we finally made the leap to move to Kansas City, where all the children can have the services they need: autism center, cerebral palsy clinic, deaf school, good therapies and counselors, and the hospital for Kyrie but with us living nearby – and in adequate housing, in our miracle house.

We still can’t explain the house. Less than we were paying before, but six stories and room for all the children to have their own room. It’s not new or fancy, but for us it is amazing, and we are grateful. We call it The Story House because it has so many stories and our family has so many stories.

It’s all kind of magical, the way Heavenly Father worked everything out and provided for us and protected us.

Not magical as in potions, but as in awe-inspiring.

And it’s been crazy, the chaos of what we have been through, and our effort to fight our way through to the other side of all this.

We have chased rabbit holes trying to keep Kyrie alive, raced the clock working so many jobs to pay her medical bills and try to raise the family, worked on regulating our emotions as our preschoolers become big kids, laughed our way through the craziness of it all, enjoyed date nights of cancer “tea” as I did chemo cycles for a fourth time, and smiled our way through the mess of all of it – not in a fake way, but because it was all so worth it to have found each other and be a family together.

So, yeah, that’s our book this year!

We are Alice in Wonderland!

Mary is the Rabbit:

Alex is the Mad Hatter:

Kirk is the Cheshire Cat:

Barrett is the Doormouse:

Anber is the Red Queen:

And Kyrie is Alice!

They are so excited!

Mary and Kyrie have a little parade and party at the Deaf school tomorrow, and the other children wear their costumes to school next week.

It’s our first year for them to still be in school at this time of year, without being pulled out to protect Kyrie’s immune system!

It’s all so exciting!

Happy Halloween!