Latkes and Applesauce

We used the leftover potatoes from the family gathering the other day to make latkes for Hanukkah, and we had just enough applesauce to go around.

The children were as delighted with this as they are a holiday that includes playing with fire every night!

Celebrating Hanukkah is not a Mormon faith thing, obviously, because it is a Jewish holiday. But after so much time in Israel, and such study of Hebrew, and the friends we have made in study and in worship, it is part of our identity and culture to acknowledge. It is a story of a miracle, and the return to the temple, both of which are important pieces of our faith and worth emphasizing.

There is a dark side to miracles, though, which is usually the struggle that leads up to the miracle. Whether it’s years in exile before the celebrated return, or a bloody battle before the victory, or the diligent work through mundane tasks to harvest much needed provision.

These are themes familiar to our family, after the hard years we have endured.

I do not mean to complain, as every family endures hard things. But I do share and write about the particular hard things that have been our hard things because those are the lessons and miracles of which I can testify.

And this season, with Hanukkah and Christmas – and even autumn’s Diwali with all of its lights – is the season for celebrating miracles.

Ultimately, these miracles are the victory of light over darkness, good over evil, knowledge over ignorance, and hope over despair.

That’s what we learn from miracles, and why the struggle before a miracle is necessary, whether that is confusion before understanding, wandering before settling, or even grieving before resurrection or reunion.

Regardless of our circumstance, and even though we have moved a ridiculous amount of times in the last few years, I love that our family has wandered like Abraham or like Moses. This can be our story. We went into exile to gather ourselves, and we wandered in circles as we became a family. Then, after having found each other, we returned here to our home base to rest as promised.

And it was good.

And now, as we set out again for what we hope is a final stop, we are starting out as a family solidified and strengthened. We are not being chased away by ghosts this time, and there are no new kids in our group anymore. We are one, just a family, as we are.

Our tiniest miracle continues as Kyrie is still with us as Christmas approaches and we thought she wouldn’t be. Daring to hope, we see her gaining strength (and weight) and becoming a little person instead of a baby. The gtube has saved her life, and her clear lungs mean that every bit of oxygen we can get into her really actually means something. She sings and dances, and runs and plays, and laughs and even screams for the first time.

She is so normal.

We will take every day that feels like that, even with syringes that pump in her organic feeding formula and even with the oxygen tubes that lay around our house now like forgotten toys.

Those of you who bought fan club t-shirts, by the way, should be getting them soon. They are being printed today and shipping tomorrow! How fun is that?

That’s not all the news we got early this morning.

After waiting two and a half years, the full report on Kyrie’s genetic testing has come back and was emailed to us.

Her results were normal, which gives us hope regarding some of the additional struggles they were afraid she might face in the future.

It is good to get good news for a change!

What a feeling to have burdens lifted, for loads to be lightened, to find out there are some hard things that just won’t be required for you (or her) to endure after so many other hard things.

This is a relief. It is good news. It doesn’t take everything else away, but it means that we don’t have to worry about the extra things they said were possible – she’s not going to lose her sight from this, or have juvenile arthritis, or other related things from other syndromes that sometimes have some of her symptoms. This is good news, a mercy given to a child who endures enough already.

But it included other news, too, which confirmed what we already assumed: cell damage and structural issues and something else I don’t even understand all indicate that in Kyrie’s case, her medical problems are indeed caused by alcohol and polysubstance abuse while in utero.

We knew that already.

But now it’s on paper.

On paper in a way she will have to face and process as she gets older.

On paper the very same day her (and Anber’s) biological mother is being transferred from prison back to the local jail for court, to get out years early because of overcrowding.

It stirs up an emotional response in me that I confess is not pretty or tender, but feels more like a storm I am afraid of because of the flashing bolts and roaring thunder. There are not even words on that stupid feeling wheel for how this makes me feel.

That woman-child, barely twenty when she was sent away to prison for what she did to my baby, has never served her real sentence. Her real consequences should be seeing this baby when she is purple, and then blue, and then grey. Her real consequence should be watching her struggle to breathe, choke on her food, and wipe away the tears that fall as she aspirates on her drink. Her real consequence should be sleepless nights week after week, month after month, again and again, in hospitals far away from home and all alone. Her real consequence should be watching that baby in a coma, pleading with her to wake up to a life of pain and struggle. Her real consequence should be two fingered chest compressions on a toddler the size of a doll, washing eight billion syringes a day, or shoving a tube down her baby’s nose and throat so as to keep her alive, even though that was one more thing blocking an already restricted airway. Her real consequence should be learning how to travel to a hospital a thousand miles away with a van full of medical equipment, getting strapped to gurneys on helicopters, or having to find a way to fly home again with an infant and six machines in your lap on the airplane. Her real consequence should be the exhaustion from suctioning every eight minutes 24/7 with no nursing help, the fear instilled from blaring heart monitors in the night, or the trauma inflicted from having ten minutes to keep your baby alive when it’s a forty-five minute drive to get there. Her real consequence should be having to plead and beg for one more dollar to get the next medical supply not covered at home but necessary to keep her alive, to work one more night shift to make up for the one spent in the hospital, or to research laws about trading medical supplies that home health won’t take back but you no longer need in hopes of finding the things you need more desperately than your own air because it’s the difference between life and death for your child. Her real consequence should be waking in the night because the Holy Ghost himself has warned that the child is not breathing, learning to trust that voice to tell you how to move or turn the baby so she can breathe or eat or gasp for air, learning to trust God for the provision and protection for that baby to live another day.

Those should be her consequences.

But they weren’t.

They were mine.

It’s so atonement-ish.

Because I chose to bring that baby home, promised to care for her, and have done my best to do right by her.

And so on the day that woman goes before a judge to plead for mercy and early release, her now almost three year old daughter runs to me to sing the Good Morning song and tell me she already went potty like a big girl.

And I will hold her, and kiss her, and hug her.

And then I will tell her about her other mother, where she grew in her tummy, her other mother who loves her so much and has spent every day missing her – which is maybe the hardest consequence of all, and one from which there will be no early release.

But it is a season of miracles.

And for lighting the world today, we are called to be merciful.

Even merciful to mothers who make mistakes.

Even merciful to ourselves.

How far can you go today to show mercy to someone else or to yourself?

What pain can you release for the cause of mercy, even when doing so doesn’t justify a wrong or erase natural consequences?

What hard place in your heart is being called to soften, what story needs reframing, what grudge needs letting go?

Who needs forgiving from something so awful they can’t undo, even while consequences haunt them far more than you ever could?

What small good can you do in the world, for someone who doesn’t even deserve it, for someone who maybe won’t even appreciate it, or for someone who needs a break in life when there has been no hope?

When Anber and Kyrie’s mother gets out of prison, I will take them to see her when it is time and they are ready.

It will be the hardest visit ever, not because she is worse than the other biological parents, but because the damage was most externally obvious. And because we have had this illusion of time where they were only mine. And because I am really comfortable with being really angry at what she has done to this child.

But that kind of anger is not of God, and justice is His to serve instead of mine.

And while there are days I know Kyrie would not be alive if we had not sacrificed so much to care for her, I also know she would not even be here if it were not for her mother.

And she is not my story so much as her mother is her story and Anber’s, and they need to write it themselves.

We have said it before: children are not happy meal toys to be possessed. They are living beings, with their own stories to write, and that woman is their mother.

It’s harder, too, because it is a starting over.

We met Kirk and Barrett’s mother at adoption, after the hard pieces of their story, during a new beginning for the boys. She and I have worked hard to learn to trust each other, as we offered visits and as she participated. It grew out relationship into the safe place it now feels, even in such painful circumstances, and it is starkly contrasted with Mary’s mother who deserves the same kind of mercy and love but hasn’t participated.

I don’t know what will happen when this woman will get released. I don’t know if she will participate. I don’t know if she will be safe for the girls. I don’t know if she understands how hard Kyrie’s life has been, or how she has struggled, or what a miracle it is that she is still with us.

I don’t know if it isn’t maybe true that Kyrie lasted this long just to see her mother again, and process that in her own way.

There’s purpose in all of it, I know that.

And I know that today is the day we are called to be merciful, so that is significant to me.

Difficult and unpleasant, but significant.

But that’s part of the journey, the uncomfortable part.

It’s part of adoption. It’s part of fostering. It’s part of being a family.

Mercy.

Biological Family Thanksmasgiving

Today was one of our favorite days of the year: our Thanksmasgiving with our biological families.

Alex’s parents and sister and niece and nephew came:

And Kirk and Barrett’s mom and baby sister came:

So did their aunt and uncle and cousin:

We even got to meet Barrett’s father’s mother for the first time:

And we talked to Barrett’s father for the first time in prison – he has not seen Barrett since Barrett was ten months old:

So grateful to his mother for doing the hard work to make that happen. It’s a tricky thing, triggers and memories and biological family issues and feelings about it, but it is Barrett’s story, and it is his to work out. Anber also talks to her mother on the phone in prison, and has been pretty direct with her. Kirk, even, at some point, when he is ready, will need his own very serious conversation with Barrett’s father. It’s a tough call, but we would rather they begin working these issues now while we can support them, rather than facing it full on as adults on their own.

Speaking of hard issues, I begged and pleaded, but we were unable to get anyone at all from Mary’s family to come. But, Mary showed them how to string up popcorn:

And Mary was also the boss of ornament making:

The children had their first recital, playing for their families:

Then Nathan led them all in Christmas carols while Mary helped me serve up the meal the children cooked: turkey, volcano potatoes, sweet potatoes, plus an Aunt’s fruit salad and a mom’s green bean casserole, and apple pie.

While they were all in line for their food, they passed the children’s school work lining the hallways:

These were gifts for the families at the end.

Anber and Kyrie’s mother’s twin sister and mother made it just in time at the end:

But the most fun part, so say the children, was the gift exchange! It warms my heart, not because the children got a few gifts, but because all the families have “adopted” all six children as much as we have, so everyone had a few gifts to open – even Mary, who had no family show up at all. They had such fun!

Push for Alarm

Because I know what is on each floor of the hospital, and because certain kinds of issues and cases are all grouped together on similar floors, and because hospitals leave families so raw and exhausted, it is often easy to tell what people are enduring by the looks on their faces and which elevator buttons they push, without even asking them anything.

The same is kind of true in therapy in general, that because behaviors and interactional patterns are grouped into diagnostic categories, and because I am trained to see these the same as my preschoolers are trained to recognize red or blue or their letters or numbers, it is sometimes apparent what people are struggling with by what they do or don’t do, or what they say or don’t say.

I mean, Nathan has a good rule about me not diagnosing people in public, but it makes reality shows on television fun to watch because I can see what I see and know what I know but not actually have to intervene at all, right?  It’s just television, not my responsibility.

That’s a version of living in pre-mortality, knowing what we know but not actually doing anything.   I talk about that in my In The Beginning book, and Nathan talked about it this morning in the marriage class we teach on Saturdays.  He said when we lived with Heavenly Father, we already learned and knew so much.  We didn’t come to Earth just to learn more, like from a book.  We came to Earth to practice what we have learned, like the way we practice piano and learn more only by doing.

Sometimes what we need to practice are new skills, like learning how to parent pre-teens after you learned how to parent preschoolers.  Other times what we need to practice are un-learning the wrong skills, just like how practicing the wrong fingering in scales develops the habit of playing the scale wrong.  Other times our lessons are about the learning itself, like how to keep trying or how to practice longer or how to have a better attitude about practicing in the first place.

Sometimes it’s about asking for help from someone who already has those skills, and I have loved the push recently from our church leadership about asking experts.  It’s really helped us in unexpected ways.  We aren’t afraid to ask for second opinions for Kyrie.  When our house drama happened, I used the free legal services through my employment to help us fight that.  We even have our own family counselor for us and all the children as suggested by the palliative care team, and which makes perfect sense when you look at all of what our family has been through in the last five years.

It helps, asking for help.

My home teacher from four years ago helped us find our new house.  My visiting teachers have checked on my children, and checked on me, and been an ever present reminder that our family is not forgotten.  Friends, who have already moved us (and our swingset) eight hundred times are already asking how they can help when it is time.

Our children are healthy and well as much from the prayer warriors surrounding us like choirs of Christmas angels, as much as anything from our own parenting.  It makes it tricky to remember if the children are the miracle, or if the miracle is the faith of so many fervent prayers.

The children, of course, like pushing the elevator buttons.  Living in hospitals as much as we do, between my work and all their issues, they get to push these kinds of buttons most every week if not several times a week.  We go to so many appointments and have to go to so many different departments that we can even take turns with who is pushing which button when.

Except for the fact that Kyrie thinks she is already three, and so she is the boss of the buttons.

Except that she can only reach the alarm button.

And because it rings so loud, she is delighted with pushing the alarm button as often and as many times as she can get away with – it’s a Pavlovian experiment gone wrong.

What we have learned is which hospital has a company in India who answers their elevator alarms, and which hospital has a company in Singapore who answers their elevator alarms.

It’s a thing.  Who knew?

Alex did it at the court house the day he was adopted.  We finished his finalization, and they announced his new name, and we snapped a few pictures.  Then he promptly ran out into the hallway and pulled the fire alarm.

We are a six alarm kind of family.

Except also, some things really are that hard, or really have been that bad, or maybe you really are that stuck.  That’s when you need to ring the alarm and call for help.  That’s why it’s there.

That’s why someone carved “I heart you” under the alarm button, did you notice?  It always makes my children feel like they have been hugged.  Because, according to Mary, “when you need help, for real, and ask for it, for real, it gives people a chance to love you and gives you a chance to feel loved.”

I think it’s true.

Life is hard.  It’s gross.  It hurts.

But you aren’t alone.  You aren’t alone, and you aren’t forgotten.

Take a deep breath, even that counts as an act of faith, when your only prayers are tears.  He already knows you, and already knows what is going on, and already has a plan to help.  He’s not going to be intrusive or compel you.  He’s just waiting for you to make your own choices, like choosing which floor you’re going to when you visit the hospital.  He already knows what’s on the floor where you are getting off.  He’s just waiting for you to talk about it.

Saying your prayers is like pushing the alarm button.  I promise someone will really answer.  They aren’t kidding around about those elevator alarms.

Houses in Glass Boxes

I spent all last week bringing boxes home from the hospital.

When my day off finally came today, it was time to start packing.

We did the most important things first: my mother’s china, then our books, and we even made it through the bathrooms and a good start on Kyrie’s medical supplies.

We also got the children’s desks and homeschool things packed, which is a great start at helping them transition.

We really did so much today!

The children are so excited!

Especially because they are all getting their own rooms, except for Anber (who doesn’t want her own room) and Kyrie (who doesn’t yet care).

We are just excited because, theoretically, we are moving to stay, as far we know, and that is a relief after the last two years.

And, Kyrie is still with us.

And she is having a fantastic week!

Good sats, tolerating feeds, and for the first time ever, asking for feeds. And learning, playing, and singing. She has been our happy girl.

Barrett’s struggle, I have found, is his very high intelligence confounded by his very low frustration tolerance. We celebrate the smallest of successes, and cheer him on through any not-giving-up. He soon will be a whole six years old, and I cannot believe how much he has grown since the little two year old we first met. He is the best little giggle, though, and I love that we hear it more and more every day.

Anber thinks she is already six, but loves to read and is quick in math when she is paying attention. But she is proud, and does not like to be wrong. This gives us two five year olds who are doing just fine, but struggle to learn to keep trying. She has come so far, though, and even though she was mad at people for watching her dance in the recital, she stayed up there and she dance! We were so proud!

Kirk is tender and sweet and funny, but aching for his own space. He is a good brother, but wears out – partly from cerebral palsy, and partly from personality. He is so much like Nathan, and both of them would rather have more quiet time than what Kirk gets from his two extroverted brothers. He can keep up with them, and do anything they can do – and with only one hand!

Alex turned nine only a month ago, and already is no longer a child. He talks to himself in the mirror until we are rolling with laughter stifled only for fear of disrespecting his valiant efforts at grooming. With that comes adolescent struggles, namely his mouth, which mixed with autism repeats anything he has heard whether or not it’s appropriate. He continues to be one of our greatest adventures.

Sweet Mary is a comfort to our hearts, but we know her adventures are only beginning! Tonight at dinner we laughed until we cried, reselling her sleep walking stories – our favorite being from our recent trip to Kansas City, where she thought she was climbing into her bunk bed in the dark but really was climbing up on the hotel desk and cuddling with the lamp! She is delightful and funny, and always creating.

Nathan is busy creating, too. He found lovely little sticks which he has worked on and painted and decorated. Their Christmas gifts will be Harry Potter wands he has made, and they will love them. We also found feathers, and he has made them little quill pens. They will be ecstatic! I am making them blankets with little Harry Potter badges on them, to stay with the theme.

It’s so funny they are so into it, as we have never yet let them see them see the movies. The later movies are PG13, and the later books are far more older than our children. We decided to let them read the first book this year, and only the third graders have seen only the first movie. Nathan read them the first book, and we made it a Thanksgiving tradition, so it won’t be until next year they read the next book before they see the next movie, and so on. It helped us pace the experience, so it should work out for them to be older by the time it’s their turn to see the older movies that are PG13. We really are, for the first time, having triplet pre-teens with three preschoolers, instead of just six little ones. The older three are not little, any more!

We have also decided, by necessity and to ease the challenge of moving during the holidays, to have Christmas at the new house even though we cannot yet be settled so quickly. It will be part of the surprise, and part of the celebration, and bring us home for a new year – all of us gathered, all of us here, all of us beginning together (again).

When you walk the path of discipleship–when you move toward Heavenly Father–there is something within you that will confirm that you have heard the call of the Savior and set your heart toward the light. It will tell you that you are on the right path and that you are returning home.”

~ President Uchtdorf, October 2017

Eternal Grace

It is the season to #LightTheWorld, which is the Mormon version of the advent calendar in a doing kind of way.

The fun started on Friday with giving freely as we have received freely.

I gave a hug to someone who needed one, even though I am not a kind of huggy person.

So maybe that’s not a fancy kind of giving, but it was something I could do that was still a hard one for me.

Then Saturday was about giving “drink” to someone who is “thirsty”.

I thought maybe we could share some of Kyrie’s extra feeding formula to someone who needed it like we did a few months ago, but I couldn’t find anyone. I pulled off the assignment by giving a friend a listening ear, and some basic coping skill information, and in the end, hope.

Today was about doing well on the Sabbath Day, and what the world needed more than anything from me was for me to spend some time with my children.

I didn’t just need to “do well” on this Sabbath Day. I needed to mom well.

I tried. I made their favorite hot breakfast. I got lunch for after church in the crockpot. I let my girls snuggle with me during steak conference, working on taking down their braids because it is what meant attention and care to them, even though such activity would be against the letter of the law for me. But they interpreted it as snuggles, and that is what was important today.

When my younger three were done after the first hour of our conference meetings, I didn’t fuss at them. I just excused us, took them for a walk, and finished with them in one of the other “cry rooms”.

After church and after lunch, I gathered all their blankets into one giant pile in the living room, and we all took turns snuggling. I didn’t worry about dishes. I didn’t worry about coming up with dinner. I didn’t retreat to my own room to rest on my first weekend off work in two weeks.

I just snuggled my babies, all afternoon, even when they “did my hair” and wrestled instead of snuggling.

It was what we needed, and throwing together dinner and treats for the Christmas devotional was an easy thing after first having done what was most important.

Sometimes doing what is most important is harder than others.

Like not being afraid.

It says more times in scriptures than anything else, do not fear.

And that’s one of the lessons presented every time a person of faith is being prepared to enter the presence of God: do not fear.

That’s what it says, every time.

Do not fear, not when your daughter is sick.

Do not fear, not when you have six little ones to raise.

Do not fear, not when politics are ugly, not when the world is a scary place, not when you are doing all you can do to make the best of it as a family.

And the way you make the best of it is more than just not being afraid.

It’s about every day being an act of faith, about getting up to try again, about having the courage to do better than yesterday.

Or maybe the wisdom to soak in every second of the present for all it’s worth.

There are plenty of days where I wish I could have done better at whatever I was trying to do, or been kinder with whomever I was interacting, or done more to help things go a little more smoothly at work, or been a little more patient with the children.

So many children.

But if the Sabbath is a temple in time, then today was one of those rare days of sitting in the celestial room for hours of prayer surrounded by angels who care. It was the kind of day that made the noise of the children sweet again, made the burdens of mortality worth it again, and made the next steps clear again – even when we don’t have all the answers or escape routes that would make life less threatening.

What I mean to say, is that today I rested.

I know, right? It’s a big deal.

But I rested, and it was good.

We ended the evening with the Christmas Devotional, which was so amazing, but here was my second favorite quote:

“Divine love fills eternity.

It overflows with eternal grace.

It reaches out and lifts up.

It forgives. It blesses. It redeems.”

~ President Uchtdorf

Eternal grace. I think that’s what I needed.

Windows and Doors

They say that sometimes, when God closes a window, it’s just to keep you from jumping off the ledge.

This is the kind of day I had.

I mean to say, it started with the dentist appointments and therapy appointments.

That’s rough enough, right?

But then I had to go to the attorney’s office, which is terrifying even if you are there to get your daughter in the local public school with her siblings or if you are there to save your stolen house.

And we are right in both cases, they said, and we have all the documentation needed.

This is a relief, even if it takes time.

We are grateful for the good attorneys, all for free because of the legal insurance plan at work (which I only clicked to add last year for a few cents each month because of a Hinckley quote about insurance).

We are grateful for good counsel from friends, and Nathan’s parents, and our bishop.

We are grateful for priesthood blessings, which a year ago promised we would be back in the yellow house “for a short period of respite and retreat, where angels will minister and care for you as you recover from the hard years you have endured as a family”.

It has been that. Thank you.

So now we must be careful and wise and prepared and face the door in front of us.

A way up door, too big for just a step, but not quite a window.

This is our life.

So do we go through?

Or wait for door number three?

We couldn’t decide yet because the day wasn’t over.

I had a team meeting for work on my day off, and then had to do a home study for an adoption for my contract work.

That left me leaving Tulsa during the worst traffic, pretty much having missed my whole one day off in two weeks.

Or, maybe that was its own kind of miracle, in a door or window kind of way: getting so much done in a single day without being penalized for missing work. That’s good, right?

So that’s how I met Nathan at the park, after he picked up Alex from social skills group, so the children could play while Nathan and I talked.

And then we talked with Nathan’s parents.

And then we talked with our bishop.

And then we signed the lease for this:

It’s bigger than our yellow house, but almost the same price in our budget.

It will give them more space for growing up, keep us safe while the house drama settles, and lets us stay in the same ward and neighborhood with their providers for all their therapies and home health stuff.

And we can finally stay put for awhile, renting out the yellow house when it’s all said and done.

A tender mercy confirmed in its timing, a blessing of provision when it seemed impossible, and deliverance when it seemed all was lost.

Maybe a little over-dramatic, or not, but that was our day.

In our most recent General Conference, President Uchtdorf said:

God knows your every thought, your sorrows, and your greatest hopes. God knows the many times you have sought Him. The many times you have felt limitless joy. The many times you have wept in loneliness. The many times you have felt helpless, confused, or angry.

Yet, no matter your history–if you have faltered, failed, feel broken, bitter, betrayed, or beaten–know that you are not alone. God still calls to you…

The fires and tumults of mortal life may threaten and frighten, but those who incline their hearts to God will be encircled by His peace. Their joy will not be diminished. They will not be abandoned or forgotten…

Those who heed the inner call and seek God, those who pray, believe, and walk the path the Savior has prepared–even if they stumble along the path at times–receive the consoling assurance that “all things shall work together for [their] good.”

For God “gives strength to the weary and increases the power of the weak.”

When we prayed for help, we didn’t know it would come from a family who was my home teacher eight years ago.

When we prayed for deliverance, we didn’t know it would mean a whole extra room just for homeschool.

When we prayed for provision, we didn’t know it would mean an extra bathroom.

We just knew we had promised to take care of these children, and our Father had promised to take care of us.

And so we knocked on that door, and He opened it.

#GivingTuesday

There are so many wonderful groups and organizations and people to help today, the official “Giving Tuesday” of the holiday season shopping spree.

It is a great day to consider buying a t-shirt to support and honor Kyrie – click here to get one!

And all of our books are still on sale!

We have the Keeping Kyrie book that tells the story of our family, which you can BUY HERE.

We also have a series of picture books for medically complex children, including an ABC book for nicu/picu little ones, a book about cerebral palsy, a book about cochlear implants, a book about getting a g-tube, and a book about being the sibling of children with special needs.  You can get these here, or get a discount for getting the whole set!

We also have started a new series of picture books about foster care and adoption, and the first one was just released last month.  It’s about relinquishment of parental rights, and told in a gentle story of quatrains.  You can get it on sale HERE.

For our LDS friends, our Book of Mormon commentaries are also on sale, which you can find HERE:

Plus, a brand new compilation of talks from the last two years, sharing studies about how we can create order in our lives out of the chaos of our circumstances – get it here!

And, if you don’t need any of these yourself because you are so put together and your life is so easy, then you could buy these books for your friends or family who do need them!

And if your friends and family also have it easy, with no need for inspiration and resources for the struggle of life, then you could use #GivingTuesday to donate books to those who do.

We have a long list of parents waiting for copies of these picture books for their little ones, and we need more donations to deliver them.  We have a sponsor who will match donations of book, so now is the perfect time!  CLICK HERE to donate books to special needs families!

Kyrie’s Heart, #Homeschool Heart

Kyrie’s heart has always struggled, since she was itty bitty.

The problem with a heart, as it turns out, isn’t so much how well you can breathe.

I mean, that matters.

But more so, what matters is how consistently you breathe.

If your heart knows your body doesn’t get enough oxygen, it can adapt, to an extent, for a while.

But this changing levels of oxygen all the time wears a heart out differently because it has to work extra hard to keep adjusting.

That’s always been her problem.

One option is still the trach, but no one locally wants to do it because they fear she would be vent-dependent, which raises other concerns, and because she gets sick so easily that a trach would make her even higher risk. We have been round and round it her whole life, and the the issues on the table change again with palliative care.

In the meantime, we have real children who have real questions about our everyday life that comes in between all those medical appointments.

So we have talked about the heart as it has come up, and even about the parts of the heart and how the heart pumps.

Because they want to know.

And because we have one very smart two year old who asks really big questions.

What does my heart look like?

Why does my heart have muscles?

What do heart muscles look like?

How do heart muscles work?

How does my heart pump?

That’s a lot from a two year old, and Anber and Mary had even more questions.

And especially after seeing the fish jump out of the tank at the pediatrician’s office, where they got to look and learn about that fish, we have had all kinds of questions about animals and how bodies work.

We have even looked at some DaVinci art to talk about the math of it, the beauty of it, and the science of it.

That’s why it made sense, in a homeschool and natural learning kind of way, when the science teacher friend showed up with a(n animal) heart for them to dissect today.

The boys were not as interested, so we didn’t make them do it, but the girls loved it.

They learned so much today, and answered so many of their own questions!

I am so grateful for learning opportunities like these, outside the books of our classroom, and so grateful for this lesson today that normalized some very grown up heart talk for a tiny little girl.

That’s palliative care.

Thank you, Shannon Chatwin, for the heart!

#LDS Primary Nursery Lesson at home – I Can Take Care of My Body

Because Kyrie is on medical precautions, she is unable to attend nursery class during primary at church.

But she doesn’t want to miss out on her sunday school lessons, so we have class at home!

This week was especially poignant, since it was all about taking care of our bodies.

That’s a big lesson for a tiny girl on oxygen, and a gtube, and a hearing aid, and with so many medical complications because of her body not working well at all.

But the lesson manual has great tips for making it sensitive in such cases, and we had a blast focusing on all the things her body can do and remembering that the medical stuff is part of caring for her body, and she is very good at it!

At first hesitant about this lesson, Kyrie ended up having a blast and making me laugh and cry all at once.