Wish Lists and Miracles

Our youngest boy, who is now five, has had a rough week since his last visit with biological family.  We used to be able to leave him in his own little spot or let him take an extra nap, and he would be able to calm down on his own – as long as no one was around to baby him or pay attention, since that was related to the underlying issue of family who gave him sugar (literally) for crying or acting upset.  That’s a hard behavior to extinguish!  

But this week, that just wasn’t cutting it, and his behavior was different than in the past.  So we talked to him about it, and he is old enough to use words this time.  He said that it wasn’t like before, where he was scared or having bad dreams or anxious because of thinking he might have to go back to his other family. 

This time, he said, its backwards. Like in the mirror.  This time I am just sad because I missed you all those hard years before I found you.  I didn’t have you when I was a baby like Kyrie is.

How heart-breaking is that?

Also, that’s straight up direct communication – and an authentic need for nurturing expressed, which is very different than extinguishing a behavior.

So we tried something new this week, and while a bit regressive developmentally, he was legitimately exploring it.  So when he expressed sadness for his little baby self, we did what we had to do: we swaddled him.

Nathan has swaddled him every night now at bedtime for a week, and the fits have stopped.  He is happy again, and we are having positive interactions, and he is much more grown up.  We have our Barrett back!

On the opposite extreme is our toddler who is no longer a baby,  and who will not cuddle unless it is her idea!

She will, however, act out her babyhood with her own dolls and pink hat.

Kyrie is doing well, as far as recovering from her gtube surgery.  She will have another follow up in a couple weeks, but we are on top of the granulation tissue.  Here is the BEST PLACE TO GET THE SOFTEST g-tube pads, for those asking where to get her some more.  These are our favorites!  

There are lots of sites we have tried online, and we still have some to sample that have been sent to us.  But so far, these are BY FAR the best.  They are so soft, and so smooth, and they edges aren’t too finished. It’s what is working for Kyrie, anyway. We love these the most. She goes through three to five a day, so we need lots!  Here she is with a Batman one, because she loves the Batman song (as learned from her brothers) and because my team at the hospital is called the “BAT” (Behavioral Assessment Team) team because we respond to emergencies.

Kirk’s book has been a huge hit, so he is super proud!  Mary’s book has just been approved, and we are excited to release hers.  We are needing books purchased as donations for waiting children whose families are not able to buy them, and right now have a matching grant that helps.  Thanks to those who are helping spread the word!

Alex and I have begun outlining his book on autism, and Anber and Barrett are still duking it out over which one is doing foster care and which one is doing adoption.  They are so funny!

If that hasn’t been fun enough, look at this text we just got from a friend!  We are on Audible now!


And then, and then, and then!

The first two volumes of my Book of Mormon commentaries dropped as eBooks on Amazon, iBooks, etc tonight!


That’s a lot of excitement these last few weeks!

If that were not exciting enough, our group home project is coming along… today we took the children to play at our old house while we measured the rooms exactly.  It’s so exciting to be moving forward!

Accomplishing such a big thing in the community really depends on the community, though.  We will be needing help with donations of twin beds, twin mattresses, kitchen items, and other things soon.  We will share a wish list in coming weeks, but please keep us in mind as you have those final garage sales and clean out your extra spaces as kids go off to college this fall!  We also need help with a day of service with some yard work and putting up a new wall in the house, if someone could help us organize that.

And then, quite unexpectedly, with all that good news came a bit of a scare. 

The hospital called and said Kyrie can’t wait and we need to be in Cincinnati by the first of September, which we were not expecting at all.

We thought we had two more months to raise those funds, and now need it faster than anything.  There’s no time for Nathan’s dinner theater fundraiser, and we are scrambling to see where to squeeze in the bake sale.  Nathan is working furiously right now as the children are in bed and I am at work, just to get the g-tube book editing finished and ready for publishing, but it may be too late for even that to help.  We have four weeks!  This is the month I only get $450 on both paychecks because of being off for Kyrie’s surgery, and now we have to come up with the travel money and be off work again – just weeks before I have to be off to speak to the chaplains and military leaders and authorities after conference in Salt Lake.  We just did an online fundraiser for gtube supplies and hate to ask again, though we might have to – any ideas on what else we can do?  We are trying so hard!  And everyone has helped us so much!

We even had these two boxes of gtube formula on our doorstep the other day, which will feed Kyrie for two weeks!

It’s amazing!  Her food cost about $200 a week, so this was a miracle to us!  Thank you!

From fundraisers to book sales to group home service, we are so grateful for so much support from so many.  It is your sharing and helping and serving and giving that is saving lives and changing the world, one child at a time.  Really.  Thank you.

We are a mess our family, creating more messes the more we try to help.

But consecration is messy.

Acting in faith is messy.

Giving all you have is messy.

But it’s worth it.

Every life, every family, every smile.

Edit: Our friend Sarah started this GoFundMe account for us – click here.

Promises and Provision

It is 2am, and I am cross-eyed and exhausted.

I woke this morning planning to swim with the children, but discovering a rainy day that left me slow and quilt-craving all day.  We spent the morning playing chess and doing puzzles until deciding that a rainy day was holiday enough to make homemade tacos.  Then I had to pull myself away from the house at two in the afternoon to work until 11pm tonight.

Now I have spent the last three hours approving edits on the final proofs of Mary’s book.  This is our next children’s book, and it’s her book about learning language.   It’s a tricksy thing to write a book about deafness and cochlear implants because of the clash between cultures, and a tricksier thing to write a book about that when you didn’t get into foster care until you were five but you aren’t writing a foster care story.  But I think we have pulled it off the best we can.

And it’s in Mary’s words, which is most important.

It’s her story, and no one can argue about that.

And she loves all the pictures of herself, naturally.

So finally, that one is finally done and ready for Nathan publishing.  Whew.

Cross that off the list, even while we wait for Kirk’s book to finally drop on Amazon.

The next book is Kyrie’s G-Tube book, just because the toddler books go more quickly, and I finished my part on that tonight and inserted the pictures Kyrie chose.

Now Nathan will edit it and also work on the cover art, and it will go for proofing next.

The children are just so excited now that Kirk’s book came out, which was somehow more real to them than Kyrie’s ABC book, and so now they are all clamoring for their turns.  We have each book outlined and in process, but we can only do one at a time!   But we are pushing through – partly because the demand is so high, and partly because I need my part of these books finished before the group home work starts snowballing.

Because I promised.

And because the children really, really, really want to tell their stories.

They are super excited, and uber adorable.

And I am in awe at the lives they are touching, and the children and families they are helping!

I am so grateful, after so many have helped us so much, to finally be able to have a turn helping others.

Oh!  Oh!  Oh!   And we have a huge opportunity for that!

We found out tonight that we received an offer from a sponsor who will MATCH all donations of books to children and families, and we have collaborated with several groups to receive these donations: The Parker Lee Project (sends medical supplies to children in need), Ronald McDonald House, foster and/or adoptive families, and special needs children and families.  This is amazing!  We have such a waiting list for children who want copies of our books but their families cannot get them because they are as overwhelmed by medical expenses as we are, and this will give us a way to send the books to these families for free… and for agencies like The Parker Lee Project and Ronald McDonald House and some local foster agencies to pass out the books as well.  When people donate books, 100% of the money will be used directly for donating books directly to these waiting children and families.  This is huge!  It’s a wonderful gift, and we are so grateful.

People giving to us so that we can give to others… it feels so very Acts chapter two, so very Zion-ish.

CLICK ON THE RED BOX on our book page to see how to donate, or share the link so that we can spread the word!

… and now, as ye are desirous … and are willing to bear one another’s burdens,
that they may be light;

Yea, and are willing to mourn with those that mourn;
yea, and comfort those that stand in need of comfort,…

And now when the people had heard these words,
they clapped their hands for joy, and exclaimed:

This is the desire of our hearts.

~ Mosiah 18:8-11

 

Also sleep.  Sleep is good.  Even if tomorrow is on its way.

Granulation Tissue and Group Homes

After two weeks of nearly perfect healing, Kyrie woke yesterday morning with a tiny red spot just under her Mic-key button.   We didn’t worry because her follow-up from surgery was already scheduled for later, so they gave her some silver nitrate on the spot while we were there.

Easy peasy!

Or so we thought.

This morning she woke up fine, almost nothing there except for some gray skin where the silver nitrate had been applied.

But after nap today, she woke up with this:

 

That bump under her button is granulation tissue.  It’s so frustrating!  It wasn’t even there before her nap!  It came on so fast!   We have been so careful to keep it clean and dry, and now have begun the battle every other gtube parent has fought.

Granulation tissue in and of itself is a normal thing.  It’s just gross and in the way and unpleasant.  It leaks a lot of mucus, and can grow really bad really fast.  We have to be careful to not let it get infected, so it really has to stay under control.

All it is, though, is her body’s hard work of trying to heal.  It’s the tissue trying to close the hole they just put in her, the hole we call a stoma, except it can’t close because the gtube is in the way.  So the new tissue gets pushed up and out, creating the extra ring bubble over where the hole in her belly is, as if it were try to close by growing up and around the tube itself.

Now we have a special ointment we have to keep on it to burn it off, and they will continue to use silver nitrate every couple of days, which means more doctors appointments and more holding her down, which she hates (as she should) and which is why we got the gtube instead of the ng tube.

It’s a normal experience for after a gtube, but unpleasant and frustrating.  We need it to heal up quickly, and are following instructions, and she is not messing with it or making it worse.  But we would sure appreciate your prayers in helping it go away!

The supplies we had ready when we came home from the hospital are quickly being used up.  We set up a Wish List on Amazon for those who are able to help with items not covered by insurance.  We especially need Nourish (on the Wish List), which is the formula we give her through the tube.  The list also has the split sponges and creams we use (for example, we keep Aquaphor on the good skin around the tube, so the harsh creams for the granulation tissue won’t hurt her good skin).  We also frequently need Q-tips and Apple Juice and sensitive skin baby wipes, but for some reason it wouldn’t let us add those to the list (it kept adding it to our grocery list instead).

We are so grateful for those who have sent us the protective gtube pads that help prevent this from being worse than it is by keeping her stoma nice and dry between cleanings!  I know there are so many sites online that sell them.  You can just search “gtube pads” and find lots of options.  They are really cute!  Some people have searched and found patterns and are sewing us some by hand!  Thank you!

In the meantime, we have spent this week trying to keep up with book orders since Kirk’s book CP and Me was released this week.  That led other people to finding the other books, and it’s been busy!  We also started the G-Tube book, and began recruiting editors for the marriage book we have been working on for the last year.   In the middle of all that, the children asked for a “puberty song” video, and so we got that filmed and now just have to finish editing it so that can drop tomorrow.   It also led us to the realization the children need a body book, too!  I began illustrations, sent the text to Nathan for editing, and we will start putting it together in the next month.

That’s all our writing projects besides our actual paying jobs and homeschooling the children.

Oh, and waiting for our Book of Mormon commentaries, Plain and Precious, to come out online.  They have been available directly through us in ebook format, but the kindle and ibook and all those versions drop on iTunes and Amazon any day now – at least the first two volumes.  We keep checking to see if they are showing up yet!   What a crazy year it has been!

We are also making progress with Kyrie’s Kids, even though that seems quiet and behind the scenes right now.  It’s a lot of work, as it turns out, to open a group home, much less four all at once!  But this week we got brochures edited and approved, business cards printed, and budgets finalized and approved.  We are starting construction plans, writing staff trainings, and finalizing contracts.  It’s so much work, but it is super exciting.  I’m relieved we are getting closer to having things going “in real life” after so much talking it for so long.

We had originally only wanted to open up a medically fragile group home because those children have almost no place to go at all, besides stay in the hospital.  But then as other facilities closed around the state and contracts became available, we bid for them to help adolescents and foster children also.  What we could offer as a team snowballed into a brilliant match for what our area needs, what our investors were willing to do, and what it seemed our communities could accomplish together.   It is all happening so fast!  Here’s the inside of our new brochure:

 

Except that we have worked on this for more than two years!  That’s a long time to work on something before you are ever paid for anything, and a lot of kids still waiting only because we don’t have the doors open yet.  The four adolescent group homes will open first, and then the medically fragile home later because of the needs in our state, but the overall project is really unfolding!  One step at a time!  It is a huge undertaking for us, but I don’t know how else to help more children and adolescents, use the gifts we have to offer, give both me and Nathan work in the same state, and be able to have our children with us together most of the time.

It is going so well, and our “Hope & Vision” programming is getting lots of good feedback, with other facilities across the country asking about incorporating it into their programs as the old coercion programs prove to be unhelpful long-term.  If you know the Sanctuary or other trauma-informed programs that have been on trend, this trauma-responsive kind of programming is what is the very latest thing and more effective long-term.  We are so excited to be able to help so many!

I even have to talk about it in Utah this fall, in front of the other chaplains and that crew, so that made me gulp for air. A community chaplain, they call me.  A mess is more like it, maybe.

Know who else was gulping for air?  Nathan, when he unzipped Kyrie after her nap and saw that granulation tissue.  Did you know this week was his birthday?  My present to him was guaranteeing no child threw up on him or pooped on him, which is what his birthday presents were for the last four years.  Mucus, though?  He didn’t say he didn’t want mucus for his birthday.  Happy granulated birthday, Nathan!

New Book Release: CP and Me

We are very excited to announce that Kirk has completed his book, CP and Me!

 

He and I talked for several months about what kind of book he wanted it to be, and how clinical or personal he wanted it to be, what age group he wanted it to be geared toward, and which pictures he wanted to include in how he wanted to tell his story.  He did a great job!  He is also very excited to be the first one to finish “not counting Kyrie, who is a baby so she doesn’t count unless she is screaming, which means she is breathing, so everything is okay.  But I’m the first big kid to finish my book.”  He is so excited, and we are so proud of him!

Nathan completed editing this weekend, and all together we approved the proofs Saturday night!

 

The book will drop on Amazon and other online retailers in about two weeks, but you can order advance discounted copies on our Parenting Class Solutions website NOW!

Autographed copies are available only our that website.  Autographs cost $5 and go toward Kirk’s I-break-my-glasses-all-the-time-and-have-to-buy-five-pair-a-month-and-also-I-wrote-a-book-so-I-earn-spending-money fund.  As with the other books, autographed copies may be delayed slightly in shipping as we pace autographs appropriately for an eight year old.

All our books are on sale to celebrate! 

CLICK HERE!

Barrett’s Talk on Pioneer Day

Today is Pioneer Day for The Church of Jesus Christ of Latter-day Saints.  We spend the day remembering and honoring our ancestors who fled persecution and walked west for safety and freedom to worship, ultimately settling in Utah.  It’s great fun for the children, and an important day for us historically.

They even get to wear cowboy hats and bonnets to church!

And one of our little cowboys had his turn to give a talk today!  I cried when I heard it.  The primary leader sent me this sweet picture.

What are gospel principles?

The gospel is what Jesus taught when he was on the earth. 
He couldn’t teach it when he was a baby, because he was still learning to talk.

But when he was a grown up, he taught about Heavenly Father and about the Holy Ghost.

He taught that we need to choose the right, and not make bad choices.
If we make bad choices, he taught that we need to fix it, and that we need to repent.

He taught about fasting, and about baptism.

Those things are some gospel principles.
Sometimes it is hard to choose the right. When you make good choices, it makes things better, but it does not always make things easier. 

This week is Pioneer Day.

My Papa has Pioneer ancestors. They chose the right, but walking to Utah was very hard.

My Mama’s ancestors had cousins who were pioneers. Her own ancestors chose what was easy and stayed home. But they missed out on temple blessings.

But my Mama is a Pioneer. She she chose to join the church all by herself. She chose the right, and she is living gospel principles.

It isn’t easy, but she got to be sealed to me in the temple.

I know that when you choose the right, you get more freedom and happiness and fun. And even though we make bad choices sometimes, that doesn’t make us bad kids.

In the name of Jesus Christ amen.

My Pioneer ancestor was William Booth, on my mother’s father’s side.

He was in the Cummings company, and clerk for the 2nd Fifty.


These companies traveled in 1851.

 

My family traveled those later years because they had converted in England, and it took a long while to join the saints in Ohio and then Illinois.  But they made it!

My ancestor traveled with his father, sister, and nephew, all of whom survived the trek, and his first wife who did not.  But he wrote of his love for her in his journals later, even after he remarried after arriving in Utah.

After remarrying in Salt Lake, and he and his family settled in Logan, Utah.

Somewhere out there I have cousins in Utah, and that is pretty fun to learn.

Even though our ancestor was baptized and confirmed in England, it was almost ten more years before he was able to make it to America and receive his other ordinances.  Once it became more available, his grandchildren were able to seal him to his parents after he had died.  I wonder at them, and him, and what it was like for him to experience this on the other side of the veil, and whether we were there… because it feels so full circle to feel it now.

Sometimes being a Pioneer means going long distances, and sometimes being a Pioneer means being the first one there.

Sometimes being a Pioneer means enduring hardship for what is right, and sometimes being a Pioneer means waiting decades or lifetimes or even longer for promises to be fulfilled.

Sometimes it means having the courage to conquer the impossible, the foresight to dream of happiness, or the hindsight to learn hard lessons from your own history and dare to set things right as well as you can.

Sometimes your own repentance heals generations, and sometimes you are not as alone as it seems.

Sometimes you do whatever it takes to avoid those same mistakes, because you know from experience that it takes a really long time to heal those kinds of wounds.

Sometimes you are really grateful for the temple, for those of faith who have gone before you, and for the prayers you have prayed through time.  Sometimes you are really glad you were rescued, that your family was restored, and that the same blessings are promised to your own children.

Sometimes it matters most when they are punks at church, or fighting for their lives, or promises of miracles yet to be witnessed.

And that first picture?  The super adorable one with them in the children in hats and bonnets?

You count six there, in that picture, right?

I count twelve, including the ones we lost before them, plus eighty who have moved on or returned to their other families but we know we will see and teach again.

I count thousands of their biological ancestors now sealed to ours, waiting their work to be done in temples as these children grow, hundreds of thousands of their ancestors being tutored by mine only so recently rescued themselves but now helping in our simple effort that people on earth too easily dismiss as a simply invasion of too many children that aren’t ours.

It’s bigger than that, do you see?

You count six children in the picture.

I count thousands of children yet to be born, see whole families in their histories, and see a millennium to come where we will learn and grow together.

You my six little ones adopted and sealed in holy temples, wearing their little hats and bonnets?

I see us, as a family, going back and back and back, and the ever present spirits still yet to be born as our family unfolds in the future.  I see them, and I know them.

I see millions.   Millions.

Like you, I see six little ones.  But the little ones I see are Pioneers.

Six little pioneers changing everything.

7 But behold, thus saith the Lord God: When the day cometh that they shall believe in me, that I am Christ, then have I covenanted with their fathers that they shall be restored in the flesh, upon the earth, unto the lands of their inheritance.

8 And it shall come to pass that they shall be gathered in from their long dispersion, from the isles of the sea, and from the four parts of the earth…

9 Yea, the kings of the Gentiles shall be nursing fathers unto them, and their queens shall become nursing mothers; wherefore, the promises of the Lord are great unto the Gentiles, for he hath spoken it…

10 … and the[y] shall be blessed…

~ 2 Nephi 10; Isaiah 49:23

Bolus on the Go

We learned lots from our outing yesterday.  Specifically, that even with her increased energy from the feeds and being able to breathe so well, she is still recovering and fatigues easily.

Except during sacrament meeting.

(Note to self:  No more naps before Sacrament meeting.)

We also tried the feeding pump and backpack yesterday, which is super exciting, except that she is still too small and falls over backwards.  She’s almost big enough, and is interested, but she is going to have to get stronger before she can carry the backpack.

In the meantime, we have this old insulated lunchbox, and it is working perfectly.   All her emergency kit supplies are in the top section, and an extra tube-friendly onesie is in the front pocket just in case:

Then on the inside, we can fit extra formula, an extension just in case, and then what we need for her feeding and cleanup:  ice packs, food already mixed (we use Nourish, but add cream and apple juice), water for flushing the tube, the cup and syringe and a tiny bottle of dish soap.  Perfect.

I decided to feed her in nursery.  I couldn’t just feed her in the bathroom, that’s gross.  I couldn’t feed her in the mother’s room because it seems silly when she is all grown up.  Just feeding her in the hallway somewhere seems intrusive (even if she did spend most of Sacrament meeting pulling up her dress to show everyone her new tube).  I finally ended up in the nursery, which seemed to normalize it for her, help the other children see in a non-weird way, give the chance for her new teachers to get comfortable with her tube and her, and transition her back into normal activity without any drama.  By the time everyone else had already finished the cool puzzles while she was doing her feeding, she was ready to get down and get started!

Then I was able to sneak out easily to take it all back to the kitchen for cleaning up and packing it all away again.  That seemed to work alright.  It felt good to figure out practically how to get everything done and still function at church.  I went back to check on her after I cleaned up, and she was doing just fine.  She had already stolen the baby doll, and was wrapping her self up in some blanket and telling people she was a burrito.

It was lovely to see old and new friends this afternoon, and to receive their words of encouragement.  It is a lonely road, sometimes, with so many children or so many special needs, anyway, and not always having the ability to connect or invest in friendships the same way as before.  I really, really appreciate the kindness of those who greeted us today – and who were patient with my daughter repeatedly flashing the crowd.

One thing I wanted to clarify, now that I have had some sleep, was about a comment we saw many times on social media when she was coding and struggling with extubation and we weren’t sure she was going to pull through this time – and then she did, again.  So many people said:

God is good!

Or other similar comments.

While we undoubtedly agree, we did want to speak up and share a bit of our own faith system regarding this issue.

It’s also close to our heart because we know so many other special parents whose little ones didn’t pull through, or her cohorts that didn’t make it this long, and even others who lost their sweet children unexpectedly when they were as healthy as anything.

And because we live every day knowing – even on great days like today – that we don’t know how many days we have left.

So we couldn’t keep quiet on this one, and needed to express some thoughts.

One is that we do agree that Heavenly Father is “good”.  We do.  But our faith system isn’t a prosperity gospel kind of doctrine.  While we don’t think God wants bad things to happen to us, and we don’t believe God uses hard experiences just for the purpose of punishing us, we do think difficult experiences are part of the overall plan of experiencing mortality.

And mortality is part of the plan, no matter how good God is, and that means people die sometimes.

Because we are mortal.

God is good, but not because Kyrie lived.

God is good because of who God is (has become).

God would still be good if Kyrie had passed, no matter how tragic and awful that would have been for us.

And He would have grieved with us, we believe, just as He did when my father passed from cancer or when my mother was killed.

God wasn’t “good” when Kyrie survived, and “bad” when I got cancer.

God wasn’t “good” when Kyrie survived, but “bad” when He allowed free agency – the ability to choose – even when that meant her biological mother would choose to use drugs.  God wasn’t “bad” when the natural consequences of this mortal world we live in meant that a mother using drugs had negative consequences on the child she was carrying.  God wasn’t “bad” when Kyrie’s twin sister didn’t survive that day, that day when I held them on the ambulance that brought them from the jail when they were born.

God was good in those moments, too.  God remembered Kyrie – and her twin sister – in those moments, too.  He even remembered their mother, who made such horrific choices and yet came to that place through the traumas she herself had already endured.  He knew, and He was present, and He was still God.

When my mother was killed, He knew, and was He was present, and He wept with us.

When I had cancer, He knew, and He was present, and He used every resource to help us.

But sometimes you don’t survive cancer, like my father.

Sometimes you don’t survive a jeep and a semi smashing into your car, like my mother.

Sometimes little boys with a southern drawl and understated enthusiasm don’t make it, even when your mom knows better than anyone exactly what to do.

Sometimes little girls who can’t breathe have brains injured beyond functioning, or hearts that nearly explode, or bodies that are just too tired.

It’s awful.  It’s horrible.  It’s heart-breaking.

But it doesn’t make God bad.

And when we do beat cancer, and when little girls gulp for breath again, and when we survive against all odds, we are relieved and grateful and know to recognize the Holy One who provided a plan of happiness in the first place, the Divine One who ordained families as good and necessary for our eternal progression, the Only One who is a Perfect Parent – giving us life, letting us live it, and loving us anyway.

Giving us the ability to choose was the only way we could know what happiness truly is.  We can’t know the sweet without also knowing the bitter.  It’s also true that means natural consequences play out, and even that sometimes loved ones pass and little ones die young.

But He is still my Father and my God, regardless.

And “good”, even when life is really hard.

And when life is super hard, I don’t think it means He has abandoned us.  I think He sends us as much help and comfort as possible to help us endure horrific experiences because He does care so very much.

And when you care so very much, you do the same for others that He has done for you.

So when your daughter survives a stroke and endures all awful hard work of therapy, then you go sing a song to cheer on your favorite cowboy when it’s his turn.

And when your children had a scary week worrying about their baby sister in the hospital, then you give them all the support they need.

Even when that means sword fighting with biological parents.


And even when it means meeting with your biological maternal grandmother so she can know you are okay, and tell your mother in prison that you survived another surgery because of the drugs she used.


And maybe if your biological mother has to work, then you get super cool bubble wands and reassure you will see her on Saturday at the physical therapy swimming party.


And maybe if your mom said she wants to move two hours away to hide the boyfriend with warrants instead of visiting you, then you get the biggest princess bubble wand there is, plus a video call with your safe cousin to talk about new training bras because you are telling everyone in the world about it all week long.


So maybe we learn, together, by being angels for each other, that God is good, even when we are enduring extraordinary circumstances.


Maybe sometimes enduring hard things together is what it’s all about.


Maybe God, who is good, never meant for us to feel abandoneded or for other people’s bad choices to separate us from what is holy.

Maybe we are just learning that we are in this together, that we need each other, that friends and family are like an extra bolus in your gtube, giving you just enough strength to keep breathing through just one more day.

Homecoming Emergency Kit

We passed our test of full feeds for a whole twenty-four hours!  

And, once we could do it on our own without nurses, Kyrie stopped the fussing and started helping and relaxed considerably for her feeds.  We have it down, now!

We spent our time waiting for discharge by playing hide and seek.

Except she kept hiding in the same place, so the seeking part was never too hard.

We finally got her discharge papers, and we were relieved they came in the morning so the children could come home in the afternoon after a long week of being shuffled around.

Her discharge diagnoses:

  • Hypoxia
  • Pierre Robin Sequence
  • Failure to Thrive, Endogenous, secondary to medical condition
  • Gastronomy Tube Dependent 
  • Oropharyngeal Dysphagia
  • Ventricular Septal Defect, Recently Resolved
  • Cleft Palate, partially repaired (revisions scheduled)
  • Allergy to Baby Wipes

We have four follow-up appointments to keep: the pediatrician, the pulmonologist, the GI doctor, and always the ENT who continues working on the wonky mess of a structure of her throat.

We are also being sheduled back in Cincinnati, allegedly in October, but dates aren’t finalized yet because so many tests and doctors have to be coordinated there, but we will know soon.

In the meantime, she should be nearly perfect until the next procedures.

We are very excited to have a little girl who can breathe and eat for a while!

She was so excited to see her wagon ride ended at our car!

And then she was asleep before we even finished loading up her toys and puzzles and art supplies!

Her seat belt connects right at the corner where her gtube is, so we had to cover it to be sure she didn’t wiggle enough to pull on it.  Tucking her bear in just with a leg and an arm seemed to work in a way that didn’t bother her or compromise safety too much.

We were thrilled to pick up the other children, and they were so excited to see Kyrie!

We are so grateful to the families who took turns caring for the children this week!  They had so much fun!  They were so spoiled!  They also got special time with Nathan’s parents for part of each day, and that was good for everybody!  We missed the grandparents while they were away in Utah visiting Aunt Clarissa’s animal baby farm house and Aunt Alicia’s new little boy.

Once we got all the children to bed, after a very very very long supper full stories about all the adventures the children had this week, it was time to set up our emergency kit.

This has the tubes, tapes, and syringes we might need if her gtube ever comes out accidentally (or gets pulled out by little toddler hands).

It’s actually a big deal, because her stoma (the hole in her stomach) is so small it’s likely to close within fifteen minutes they said.

So we have to be ready, just in case, with a backup mic-key button, and even a ng tube we could throw in there if nothing else worked, until we could get her to the ER to have it replaced.

But if the hole closes, we would have to have surgery all over again.

So we have to be ready.

We pulled these emergency supplies together as instructed, and put them in the top part of a lunchbox we have.  Then we can fit her formula and current supplies in the regular part of the lunch bag to stay chilled when we leave the home.  That bag, and her own backpack to carry the pump when she needs to, will go with her anytime she leaves the house so that we have what we need  if something happens or if it’s time for a feeding while are out and about.

It’s like diaper bag 2.0, and means we still load our van with four machines and three backpacks of supplies anytime she leaves the house.

The progress, though, is that some of it just to be near her.  We don’t have to take it all inside everywhere with us all the time anymore, which is progress, I guess, but also just part of life with a complex little one.

Nathan and I also cleaned her stoma site again last night, for the first time by ourselves.  It was not hard, but we were anxious and Kyrie was not happy!  Cleaning under the tube doesn’t hurt, but she does have stitches under there so those area are tender and we don’t want to catch on them.  Plus it is still taped down.  It’s so tricksy!

We put her pajamas on backwards so that (maybe) she wouldn’t be able to get to it or mess with it in the night.  Hoping on that, Nathan and I both went to sleep and slept all night.  I feel so much better this morning!  I’m also stealing the children away today so Nathan can get some real rest after this hard week.

This weekend is my weekend off, thank goodness, so I get to go to meet my brother in Arkansas for the day.  My father’s mother’s family is having a reunion.  But get this: it’s a genealogy event!  How cool is that?

It will give us practice taking Kyrie out and doing her feeds on the go, which we are supposed to practice and know how to do before her follow-up appointment.

But then I don’t have to go back to work on Monday, I guess?  I got to work last night, exhausted, and the time clock said I was not an employee!  I panicked that maybe I was fired for being off work (a fear you have after being let go via text message while you are in the hospital with your daughter once before), but knew my boss knew what was going on.  So I went up to my office and tried to clock in on my computer, but could not get to Cerner or Kronos.  I had to call the company number, and they told me my FMLA was approved after all!   I will not get paid, but I cannot go back to work until the 24th and will not have any computer access until that day.  They told me to just go home and take care of my daughter!

I cried. I was so exhausted, and so relieved, and so glad to still have a job!   All my tears from the whole intense week just came pouring out of me.  I cried all the way home, and cried when I walked in the house and surprised Nathan and the children, and cried as the children jumped up cheering.

We really needed this.

I don’t know how we will do the time without pay.

But we are ready with everything we needed for Kyrie to come home.

And know why we were ready?

Because community.

Heavenly Father most often cares for people through other people, and people with big hearts and generous spirits helped us get through the last week.  

Because our children were safe and busy and happy (and stuffed full of treats) while we were in the hospital all week.

Because people were kind enough to share our fundraiser link, or share a few dollars, or donate sterile supplies they had extra, so that every single thing we needed for Kyrie to come home had arrived by last night – plus a new travel concentrator on its way tomorrow.  

I cried about that, too, that experience of walking Kyrie into the house and everything being here ready to care for her.

We are grateful, so grateful, for all the ways people helped (even the meal we got Thursday night so the grandparents had a bit of relief one evening).

Thank you.  Really.  Thank you so much.

Because sometimes what you need in an emergency, and to prevent an worse-er emergency, is just plain good people and simple tools to help you care for good people.

And sometimes, what you need is no more emergencies.

Like having a little girl who can breathe.

Like having a little girl who has a way to eat.

Like having a community of angels who help a family endure a crisis (or four years of crises).

Like having friends who give you you hope and courage and strength beyond what you could muster on your own.

Thank you for your help, and thank you for your prayers, and thank you for loving a little girl and her brothers and sisters.  And her parents, too.

Just thank you.

Happy Birthday, Mary!

This girl came with a smile that melted our hearts, especially when almost none of the other children started out with smiles.

That was the first time we met Mary, when I picked her up and brought her to the park where Nathan was waiting with Alex and Anber.

And, as I said the other day in Anber’s birthday post, we knew this girl was special when even Anber liked her right away!

We had two challenges to deal with right away: first, a little girl who couldn’t hear at all and had almost no language (English or sign), and second, a Mama who had to learn how to braid black hair.

Both were tackled easily, and she immediately responded to her efforts.  The foster mom before us had already done the work of getting her hearing aids, and I knew how to deal with those, and I asked a friend from church to come teach me about hair.  It was so helpful, and even though I had to start simple, we got this girl what she needed.

 

Besides access to language and good care of her hair and skin, the other basic need Mary had was for food.  She had not had much experience with regular meals, much less healthy ones, and it took her a very long time to adjust (and not hoard her food).

 

The other big thing for Mary was that she had not been exposed to much at all, outside of the environment from which she had come, and so it did not take much stimulation to complete intrigue her.  What a fun season this was, to show her the world!

 

As language came, and her understanding of our family culture, she even wanted to play piano.  This made me nervous because we weren’t sure how much she could really hear, and we didn’t want to push it on her, but she was determined and stubborn and wanted to try.  And so she did.

 

When we found out she would be staying with us long-term, though the plan was always for her to return to her family, we went ahead and made a special room for her with the colors she picked out:

 

And I started getting braver with her hair!

 

But we didn’t see her really light up until a few months after she had joined our family, and we took her to the Deaf children’s holiday party at TSHA.  She loved it!  It finally clicked in her little head that sign language meant something, and she started asking for words, and our little trash hoarder who had been homeless figured out how “crafting” could turn her trash into treasures.  This was a day that changed everything for Mary!

 

The only thing that could make that better?  Gingerbread houses, you guys?  Christmas was MADE for Mary, and she exploded with excitement in all things bright and shiny with yummy foods and crafts and extra treats!

 

She responded so much to music that Nathan began taking her with him to symphony, so she could experience more sounds:

 

And one funny day, Mary finally heard music – and started to dance.

 

That’s when she changed from a sullen, withdrawn, “cognitively delayed” girl into a bright and active little girl as smart as anything!  She blossomed with every bit of language she picked up, and with every new exposure, and with every positive interaction we created.

 

We even saw attachment start to grow, ever so slowly, and it was a beautiful thing to see.

And also hilarious, because Alex and Mary are two of the funniest kids I have ever met in my life.

 

But there was one thing that was not clicking for her:  she came to us about nine months before Anber and Alex’s adoption were finalized, and she was not impressed to still “just be a foster kid”.  She wanted to be adopted so badly!  She asked us almost every day, and it was difficult to keep explaining the difference to her, and that she wasn’t anywhere near termination.  But this princess was one tough cookie, and she just kept pushing forward.

 

And I started getting really good at braids!

 

And it was sweet Mary, with the big heart, who was so excited about new brothers when Kirk and Barrett came – and she could keep up with them!

 

Mary came to us when she was just barely six, and by the time she was seven, we were asked to consider keeping her as it was no longer looking like she was going to be able to go home.

We said yes.

 

Who could resist a princess that dresses up and brings flowers to the table, even when all she wants is pork-n-beans?

 

This was the last Saturday play date we had with the boys before they officially moved in for adoptive placement.  They were the only ones we hadn’t fostered first, and none of us was completely sure how that was going to go.  And Mary was mad that they “cut in line” for adoption, no matter how many times we reassured her that it didn’t change us being able to keep her!

This was also the day Kyrie was born.

None of us knew then what the next year would entail, or how hard it would be, or how close we would grow together as we endured as a family.

But I was getting really good at braids, and now could bead, too!

 

And we knew by then, too, that Mary was smart as a whip and super advanced, not cognitively delayed at all!

 

She was also super nurturing:

 

And brave as the boys:

 

And always made the other children feel special by eagerly asking, “Do you want to sit by me?!”

 

She was also a super creative girl, with an imagination like nothing else!

 

And then it was time for her first cochlear implant.

 

Nathan gave her a blessing:

 

And she didn’t even act scared!

 

And while we waited for her to heal, we worked on making memories enough to become a family.

 

Finally, it was activation day – the day she would get the outside part of her processor, and get to use her cochlear implant for the first time.

 

Baby Kyrie was there, and her awful snorting-breathing sound was one of the first things Mary got to hear.

But she could hear, and now wanted to learn violin also!

 

Not only did Mary become a part of our family, but she became an important part of our family.  While Anber may have been our first baby girl, Mary has the distinction of being our oldest girl – with all the rights (and bossiness) and privileges that come with that position.   Know what, though?  She is a really, really good sister.

 

She has a temper, though, and there was that one day in first grade when she got irritated about having to wait on new braids… and so she cut off all her braids so she could get new ones… except then her hair was too short!  I cried!   She cried!  Talk about mother-daughter bonding!

But we survived.  And slowly, her hair grew back in the midst of many more adventures.

 

 

And then, just when we almost had hair again, it was time to shave one side because she had done so well with the first implant they were ready to do the second one.

 

Not only that, but Kyrie was in crisis at palate repair, so we literally took Mary from the hospital for her surgery all the way to Cincinnati for Kyrie’s surgery.   She was such a trooper!   We had doctor’s orders to help her sleep all the way there, and not unwrap her head until we had arrived.   That’s some serious family love, right there, managing all that at once.

 

The way home from that trip was as good for her as it was difficult going up, though, because that’s when we found out – finally – officially, Mary was getting adopted.

She was so excited!  And it was such a special day!

And those are all the pictures we could not share before that day.

 

Mary is our precious daughter, so bright and funny and clever and crafty.  She loves caring for her siblings, wants to be a teacher, and is very excited to be the boss of our family.  We love her!

 

Happy birthday, Mary!  We are so glad you are part of our family!  We love you!

(And can’t believe you are NINE!)

 

 

Happy Birthday, Anber Bear!

Our first baby came to us four years ago, at 11 months old.

 

That’s her, sleeping with her eyes open, laying in the pack-n-play that first night when she came at 3 in the morning dressed only in an EMSA towel.

That’s her, sleeping in the pack-n-play, that first morning when I brought Alex in to meet her, when he leaned over with his little four year old self and shouted, “Where did you get that little brown baby?  At the gift shop?”

We loved this little girl!  While I had done babysitting all growing up, and had nieces and nephews and little cousins, and had taught all kinds of little classes, this was Nathan’s first experience with bottles and diapers any tiny snaps and zippers.  He worked so hard caring for her!

 

It was the start of our family, with little Alex (and his long red curls) and baby Anber!  They lived together with us for two years, while other children came and went, before we ever got Mary, and three years before we ever got Kirk and Barrett.

 

But we were smitten with that little bald baby!  She was almost four before she had any more hair than that!

We loved that little baby girl, even though she only screamed those first few months.  It took her a long time to trust us, but we got there.

 

It was Alex, of course, who taught her how to smile, who helped her relax, who showed her how to play and laugh and sing.

 

This was the beginning of our story as a family.

These are the pictures we could not share back then, back when her face had to be hidden from view while visits continued and we lived and breathed from court date to court date, back when her code name here was “Toddler” and her big brother was only known as “Five”.

 

She grew up so fast!

 

And loved music from the beginning.

And always helped Mama cook.

 

We loved her, this little one that landed on our doorstep one night at 3 in the morning.

 

She has always had a thing for big sunglasses.

 

And she has always been a good helper.

 

Even though now she is the middle child in the girls’ room, she will always be our first baby.

 

And even though she is super shy and doesn’t like very many people, she loved Mary from the very first day.  We knew Mary was a keeper when even Anber approved!

 

And remember that time when she wasn’t even three yet, and they tried to take her picture at preschool, and she punched the photographer in the face and broke his glasses “because he told me to smile”!?!

 

Yes, we loved this little girl, so much!

 

Also, she is crazy.  You guys may not know this, since she rarely speaks outside the home, but she is one of the most hilarious little creatures I have ever met.  These three together are a riot, and their smart wit and quick banter cracks us up!  They are so funny!

 

Also, she finally grew hair.  Almost.

 

And she’s a daddy’s girl.

 

We are so honored that she is a part of our family, and having her sealed to us for time and all eternity was one of the best days ever!

 

That’s when we got to meet Kirk and Barrett, finally:

 

And if we ever thought Alex and Anber were BFF’s, that was nothing like the love these two “twins” have for each other!  What adventures we have had watching these two grow up together!

 

This was our family!

 

Plus one more, and Anber was the first one to meet Kyrie, since they were biological siblings and the others were not finalized in their adoptions yet.  Anber got to meet Kyrie in the hospital in Oklahoma City, after the first life flight, when Kyrie was about three months old and still in the NICU after her first seven surgeries.

 

We didn’t tell her when we finally got to bring Kyrie home, but just surprised her by picking her up early from school.

 

Ever our wild child, she is always coming up with some creative scheme just like Papa:

 

And she was as glad as anyone when Kyrie and I finally came home from Cincinnati.

 

That’s how I got three daughters, and how my first baby became the middle child.

 

 

Happy Birthday, Anber!  I cannot believe you are five years old!