Because Kyrie’s medical precautions continue, we are still doing nursery at home.
Here was here little Christmas nativity lesson this morning:
Because Kyrie’s medical precautions continue, we are still doing nursery at home.
Here was here little Christmas nativity lesson this morning:
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.
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
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.
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.
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 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 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!
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.
When Anber was a toddler, I took her to the library almost every day.
Her baby sister goes to the hospital almost every day, it feels like.
For me, it is one of the griefs of having a medically fragile child. I wish we were going to the library instead. I miss those kinds of moments, and grieve the loss of them from our lives. But Kyrie doesn’t know she is missing the library.
For her, the hospital is home.
She knows the people by name.
She knows what elevator buttons to push.
She knows which wagon is hers.
She can drive herself to the lab, or to pulm, or to surgery admission. She knows where to go. This is where she has grown up.
The growing up piece is the miracle.
We never knew we would make it two.
She has been through so much, but still she is here, with good days and sick days, breathing days and purple days, play days and sleeping days.
But after a year of 19 pounds, we have suddenly jumped to 23 pounds.
And another inch taller.
Maybe because she had been sick, and on oxygen, and the child has only ever gained weight when she was on oxygen.
But after a handful of good days, and off air when she is awake and up and moving, the gtube has helped her maintain that weight for a whole week – which, for us, is a really big deal.
Because every ounce matters.
Every breath matters.
Every syringe full of nutrients matters.
Because that’s how we got a whole year of tomorrows we never thought would come.
Today was not a fun hospital day.
I mean, it was better than an ambulance ride, and better than a life flight, if that’s what we are comparing to in this little life.
But it was a poke and prod kind of day, a picture and scan kind of day, a hold you down on your back so you can’t breathe and suck out your blood kind of day.
Because that’s the thing about medicine: they can’t help if they don’t know what’s going on.
And to know what’s going on, they need pictures and levels and numbers.
It’s the ugly side of miracles, you guys.
We take the miracles where we can get them, like her finally being back on the growth chart at a whopping 3rd percentile.
Because everything else is so hard.
Getting food in her is hard.
Keeping food in her is hard.
Breathing is hard.
Playing is hard.
Development is hard.
Getting those numbers can be hard.
Numbers that tell us if and how much her body is still processing food. Numbers that tell us about her kidney function. Numbers that measure what her life is expected to be.
And now they say – they, who are specialists states away and looking at numbers instead of the girl we love – they say what we have fought to avoid is happening, that her heart is too big, and has been working so hard for so long that the tissues are getting tired and hard, and that her organ function is becoming the primary medical concern rather than airway structure.
They moved forward with genetic testing this morning, as a last chance at finding an underlying cause that can explain everything and offer some hope.
Except, they say, we are already treating her as we would.
So it’s an illusion, really, because these results probably won’t actually change anything.
That’s when we practice using our words.
I do not like to be sick.
It makes me angry if they hold me down.
It makes me sad they take my blood away.
I do not like surgery but I do like popsicles.
It’s more than courage.
Courage implies a choice.
This is different. This is violating. This is the assumption continuing this saga will give her more moments for other things, like going to the library again someday.
But again, that’s why palliative care is so important.
Because today, when they say her heart is too big, we can still go home to our own beds.
When they say her heart is working too hard because she can’t breathe, we can still go home to our own toys.
When they say her heart will wear out because of working so hard for so long, we can still go home to our family for our little life together.
Because at our house, someone is supposed to be around to steal all the hairbrushes. Someone needs to collect all the crayons out of everyone else’s school boxes. Someone needs to pinch the children when they are naughty.
Because that’s quality of life, when you are only two.
That’s our news today, that we didn’t have any good news.
There were no good numbers, no good scans, no good pictures.
Except for this one:
And that one is everything.
Well, our family had our first all out tweenager drama today.
Yes. Those looks.
No details, because that’s the thing about tweenagers: you can’t really share their stories.
I mean, I promise we think the older children are as cute as Kyrie, but we don’t share if they don’t want to share, so sometimes they give the illusion of slipping under the radar, and other times they are just busy doing their own thing which doesn’t have to be documented in social media if they don’t want or we aren’t there, and that’s okay, too.
But here is the part they did want to share, “in case it helps some other children who don’t know how to be teenagers yet”.
Also, my nine year olds are not teenagers, I just want to point that out one more time.
Anway, here’s the video they wanted to make today:
For those who cannot hear (the video was edited on a phone where it isn’t as easy to add captions), Mary says that she was teasing Alex for being in love, and Alex says he handled it by throwing a temper tantrum. Mary says she learned to not be a bully with her words, and to not talk about private things in public. Alex says he learned about problem-solving by using his words, and setting boundaries, and we give some example responses he could use next time, like “that’s private, so let’s not talk about it right now”.
How adorable is that? It was really hard for me to keep a straight face, because they are such sweet babies. Except that this was really big for them, and brand new in their world, and they are feeling so very grown up. So I tried hard to respect that, and take it all very seriously, but in my heart I know they are adorable.
That’s how what seemed to be a Sunday School disaster of epic proportions in which everyone assumed I would be monstrously angry, turned out to be an excellent learning opportunity for all of us – and an early intervention for these tweenagers who maybe won’t always confide in me so easily as they grow up and differentiate themselves in the normal process of becoming their own individual selves.
What matters, more than anything, is that we are family.
And that means we are learning to be kind to each other, and gentle with each other, and loving toward one another. It means we forgive each other, and let things go. It means we serve one another, encourage one another, and cheer each other up when we can.
That’s easier said than done some days, even for parents, which makes it extra important for us to model all of those things, from letting go to increasing in love.
That’s how today, which these two assumed would leave them grounded for “weeks and weeks” (we have never grounded them for weeks and weeks) turned into them helping me cook Thanksgiving dinner, which we missed on Thursday because I was working (the children had Thanksgiving with Nathan’s parents while I worked).
They were so proud of themselves! This is what is important: our relationships, our time together, and what we will remember about it all as it passes far too quickly. It’s true there are times the children need limits, or times when natural consequences play out in ways from which we cannot rescue them. But other times they need nurturing more than reprimands, and the very most sensitive beginning to the very hard years of adolescence feels like one of those times.
Limits we reviewed today? No dating until you are sixteen.
Natural consequences that played out today? If you gossip in Sunday school, everyone knows you tell secrets. If you run out of class to hide in the bathroom, everyone knows your feelings were bigger than your words.
And the nurturing?
We talked about liking other people, in a dating kind of way, for the first time. I mean, not in a curious about what will happen some day kind of way, and not just in a what are the rules for our family kind of way. But in a I-am-genuinely-interested-in-someone-for-the-first-time-ever kind of way.
And we talked about growing up, and changing feelings, and bigger feelings. We talked about ways to express that in good and healthy ways, besides just warning of the less helpful ways. We talked about how you know when there is someone worth liking, about when to like someone, and about liking lots of different people to learn what kinds of things in other people that you like and what things you are not comfortable with as much.
We talked about being a friend to your brother and to your sister, even when they like someone.
We talked about that friendship being more important than dates, and that you will know a good date when it fits well in that friendship, too.
Because we are family, I said. And we went through a lot to become a family. So not taking care of each other is like cooking a whole fancy meal but not eating it.
And that brought us back to childhood, because just talking about a fancy meal made us need to eat one.
And so we had thanksgiving, to celebrate our family, even a family that is growing up.