When ye have done it unto the least of these, ye have done it unto Me.

Thank you all so much for the sweet comments and expressions of concern.  I am so sorry I didn't update yesterday-- I know many of you have asked for one.  I went into shut-down mode yesterday and just didn't feel like talking about it.   I guess I still feel that way today, but I know people are worried and I want to at least let you know that Graci is doing great.  She acted pretty much normal yesterday besides being tired and is at school today-- yay!  Unfortunately (and I can't put into words how frustrated I feel about this) her neurology appointment is next Tuesday.  Apparently, they like to worry mothers as long as possible  wait for the effects of the seizures to wear off to get accurate readings on the tests.   Obviously, the tests could show NOTHING and it could be a one time event that we can just chalk up as a good reminder of what's important in life.  Or it could be something bigger.  I am not fond of option two.

So, to change subjects and talk about something that makes me smile, I want to share three of many acts of kindness that recently happened to our family:

1.  As I've talked about in the past, we are the incredibly blessed recipients of "laundry fairies."  One of the sweetest couples I've ever met in my life show up every Tuesday and Friday morning to pick up FOUR loads of laundry.  They even let me just sit it out on my porch so I don't have to be here.   It's returned later that night or the next morning, neatly folded and smelling wonderful.  I feel incredibly sheepish even blogging about this, because I know that I am spoiled rotten and that I don't deserve it any more than any of you reading this.  I wish every busy mother could have laundry fairies in their lives, and you can be assured that I plan on being one someday!  Anyway... this couple exudes kindness and the true love of Christ.  I LOVE them.  So when Lexi and Xander burst into tears and began sobbing uncontrollably when they found out that their grandparents wouldn't be there for "Grandparent Day" at school, this sweet couple came to our minds.  The next time they came over, I timidly asked if they had plans on Friday at 10:30.  As it turns out, they were both working.  When I told them why I was asking, her reply was, "Well, then we'll just have to be there!  I mean... priorities, right?!!"  Even with all of my insistence that it wasn't necessary, they took their precious time to be surrogate grandparents for Lexi, Xander, and Jesi.  The kids were SO happy about this.  It's all they could talk about after school that day.  I had to laugh when Russ told me the next day, "I had so much fun with Xander.  As we were walking down the hall, a lady asked him, 'Is this your grandpa, Xander?' to which he replied, 'No, it's the guy who does our laundry!'"  Her quick reply-- "Even better!"  (:

2.  You all know of Elli's antics in her bed.    As I'm sure we've mentioned, Elli sleeps on what was once the guest bed (before we had so many cute kids) and it is a very nice, expensive, kind-sized mattress.  Because we don't have anywhere else to put the mattress, it has become hers-- lucky girl.  With her lovely habit of taking off her pull-ups and ripping through mattress protectors, it was in need of a good cleaning.  I found someone online who had great reviews and gave him a call.   He told me it would be $100, and after calling around, that seemed reasonable.  When he and his son came here, I explained how the stains got there, which led to questions about Elli and our other kids.  As he cleaned the mattress, I went out to play with Sophi and her friend, Jordan.  When he finished, he came outside to let me know that he was done and he wasn't going to accept payment.  I tried to convince him otherwise, but he had been touched by the kids and their stories and asked me to please allow him to do it for free.  My heart was so full, and I want to share his information in case anyone here in Utah is looking for a very kind man to do their carpet cleaning!   He did a great job-- the mattress looks amazing.  (:

3.  While at the hospital, one of our neighbors came over to check on the kids and ended up spending a good deal of time here.  Anyone that knows me knows that deep cleaning is not my forte.  I am very happy if my house is picked up-- it takes a special occasion to do something like baseboards or dusting ceiling fans.  I have one window that has been particularly neglected.  It is right above the sink and because I rationalize that nobody (meaning company) really ever looks through it, I haven't cleaned it in a VERY (you don't want to know) long time.  Apparently, LuAnn must have noticed this (hmmm... I wonder how....) and decided to clean it.  I mean, she took the whole window out and gave it a good cleaning.  I can actually see out that window now-- I know, amazing concept!  It was just one thing, but it meant a lot to me.  It also taught me that even though we can't do everything for someone, we can do SOMETHING.  She couldn't deep clean my whole house, but doing that one window made me feel super loved.  (:

Again, I could write many more examples-- please know that if you are one of the sweet angels in my life that I do know it and I do treasure you and appreciate you, even though I'm often not great at sending thank-yous or letting you know-- I really am grateful for EVERY act of kindness.   I'm determined to be better at following your examples and blessing the lives of those around me.  (:

--Christianne

Graci update

I'm writing this as a way to respond to the many sweet texts (to Jeremy's phone-- mine is lost--ugh-- so if you're texting me, I'm not getting it--sorry) and messages of concern about Graci.  I figured this would be the easiest way to let you all know what's going on.

At about 2:40 today I received a phone call from Graci's school telling me that Graci was having a seizure and to come immediately.  I was, of course, terrified.  With all of Graci's health problems, she has never had a seizure in our care.  (Her health report from China said that she possibly had a seizure when she was 5 or 6.)  Sophi's friend, Jordan, was over to play, so I threw them both in the van, sped to the Jordan's home, and basically threw the two girls at Jordan's mom.  (Thank you, Sharlie!  I am so glad that I knew I could do that without so much as asking if it was ok.)  When I arrived at the school a few minutes later, there were already firetrucks and an ambulance outside.  I jumped out of the van and went running for the doors.  School had just let out, and apparently word spreads fast because students were yelling at me, "She's in the gym!"

When I arrived, she was lying on the floor surrounded by teachers and paramedics.  She was talking a little bit and responsive, which was so relieving.  I sat next to her and comforted her and answered questions for the paramedics.  Jeremy came a few minutes later, and soon after he arrived, she had another seizure.

For those of you who have ever had to watch your child have a seizure, I am so, so sorry.  It was awful and frankly, the most terrifying thing I've experienced.  She wasn't breathing well during the seizure and the paramedics had so give her some medication through her nose to help her.  Hearing her finally gasp and take a deep breath was the most beautiful sound, but she continued to cough and struggle to breathe easily after that.  As soon as she stopped seizing, they strapped her to a stretcher and hurried her out to the ambulance.  They allowed Jeremy 15 seconds to give her a blessing inside the ambulance before taking off.  I was allowed to ride in front and watch her through a camera while Jeremy drove.  It was the longest 40 minute drive I've ever been on!  I won't share all the thoughts that went through my mind, but I will say that there is nothing like this to help you put life and challenges in perspective and to help you realize how you always want to be treating your children.

Because I am quite wiped out at this point, I will skip to what you really want to hear:  Graci is home.  They don't know what caused the seizures.  She had an EKG and it was normal (for her.)  There is no sign of infection or a stroke.  Cardiologists are doubting that it is related to her heart.  So... the next step is to get some neurological testing done.  Tomorrow we will be getting an appointment for an EEG which will hopefully give us some more information.  For now, we were given the instructions that if she has another seizure to call 911, but to otherwise let her rest and wait and see what neurology says.  So there you go.

Thank you to the wonderful friends who helped with kids and dinner-- we are so thankful.  I loved knowing that I didn't need to worry about what was going on at home.   I'm so grateful to have so many angels in my life.

I'm sure I don't need to ask-- but would you please keep Graci in your prayers this week?

Thanks,

Christianne

Missing a special friend

Jesi's darling best friend moved a few months ago.  While cleaning up the living room today, I found a piece of paper.  It had a darling picture of two girls within a heart and these words:

When Rylie had moved the world seemed different to me.  It's like the world has changed for me.  It's like I'm in a different world.  I feel very sad.  I haven't been having the right feeling so what should I do for now?  I think for this day nothing will get worse because I feel lonely without my friend Rylie.  I feel like when we Skype it's like we are together!!  When that happens I feel the world is very good.

Breaks my heart.

--Christianne

Two Beautiful Girls!

I went to bed last night next to the most beautiful girl in the world.  I woke up this morning next to two of the most beautiful girls in the world. About 5am I felt a little snuggle/kick in my side.  I groggily rolled over and saw Sophi staring up at me.  A big smile lit up her face as she leaned into give me a kiss.  Somehow my grumpiness at being woken up melted away into appreciation for this precious little imp that often tells me how much she loves me and that I am the best daddy.  Ah, parenthood...short on sleep, long on love!

-Jer

Couple of Pictures

The other day Cali and Jesi were gigling.  "What?" I asked.  Jesi explained: "When Cali locks her leg in place and stands up...she's shorter than I am!"  Another fit of laughter from the two girls.

We were driving to Parker's basketball game the other day.  Some of us were really tired...

A Family Home Evening trip to the rec center to go swimming.  This picture shows almost enough towels for our family:

Have a super-fantastic day!

-Jer

Who's on the phone?

Saturday morning I took Taylor to a junior high math competition.  On the way back I was going to go right by Walmart.  I figured I could stop and pick up some items for Sunday dinner.  I've become much more domestic lately.  I cook way more frequently than I used to.  I planned on making cream of broccoli soup (which I did and which turned out to be very well received by the kiddos!).

I called Christi to see if she wanted me to get anything for her while I was at the store.  She answered the home phone and we talked for a few minutes.  She asked if we had been able to find the competition and Taylor's teacher.  I had.  She asked if we were on time.  Early!  (This is a fairly big accomplishment for me.)  I asked how her morning had been.  Had she been able to go back to sleep after we left?  No.  What was the problem?  Sophi and Lexi kept coming in the room and needing this and that, etc.  Anyway, we had been talking for at least five minutes.  I finally came around to the point of my call.  "Do you need me to get anything while I'm at Walmart?"

Instantly this third voice chimes in, very matter-of-factly and without any hint that she might think she's a third wheel in this conversation:  "We could use some fresh rasberries and strawberries for waffles, 'cuz I love waffles.  And maybe you could get some Fruity Pebbles.  Actually, maybe you should get two bags of Fruity Pebbles 'cuz we have such a big family.  Oh, and you know those cookies you get for lunch?  The ones that are chocolate and strawberry and vanilla?  But you've been only getting the vanilla kind lately?  You should get some of the chocolate and strawberry ones 'cuz I really like them, too."

"Thanks, Jess.  Those are great suggestions.  Would you like me to get some cool whip for the waffles?"

"Just a minute, let me check and see if we have any...pause...Um, is sour cream like cool whip?"

"Not at all."

"Then, yes.  You better get some cool whip, too.  Good idea, Dad!"

I love my Jessica!!!

-Jeremy

Elizabeth

Elli.  What goes on in your head when you sing pop songs and church songs and songs I've never heard but that are obviously real songs and songs I've never heard because you just made them up?  What motivates you to go downstairs, play the piano for a few minutes, then come back up and play with three of your rmusical toys at once, pushing the same button rapidly so that you hear the first sound of whatever the toy does over and over and over again?  Why do you suddenly get angry and scream and throw a fit when two seconds before you were sitting silently with your thumbs pressing your eyes?  What makes you ask repeatedly for chocolate and pumpkin bread and juice and treats and fruit snacks and many other types of food (OK, that last one was a dumb question:).  Dear, wonderful Elli, what made you ask, "Dance with Mommy?" yesterday morning?  How happy you made your mother.  You had never asked for this before.  Last year I started dancing with you before you got on the schoolbus, and since then you have often asked to dance with Daddy.  But today, something made you ask for your mom. 

Oh to understand you, sweet Elli.  And to have you understand us.  You had an appointment with a child psychiatrist today.  We set it up a few weeks ago when you were going through an almost unendurable screaming phase.  It was having an impact on all of us at home and on your teachers at school.  We were hoping there might be some medication that would help you settle down, help you feel less agitated.  But now you've settled down on your own.  You're on to a happier phase with lots of giggles and laughs and jumps and bounces.  And so we wondered why we were taking you at all.

Elli, I continue to grow in my ability to love you for who you are.  I still have much to learn, but my own blindness is lessening as I have the blessing of seeing beyond what most people see.  Of seeing beyond what I've seen in the past when looking at people with severe cognitive disabilities.  Of seeing you.  The glimpses are few and often far between.  But they are there.  Times when the distance between us suddenly becomes oh-so-small.  A hug.  A kiss.  A rare comment.  Glimpses that let us know you are in there.  Waiting.  And we continue to wait for you, dear Elli.  And we have faith.  A perfect Father has a perfect plan for you.  One far beyond our comprehension, but nonetheless His perfect will for you.  And you are beautiful.  Beautiful for who you are now.  Because someday when your body and mind work perfectly, you will still be you!  That precious spirit He protected in a body that would never have to deal with temptation or sin.  And I am sure that when we meet the perfect you we will look back and say, "If only we had been less blind, we would have seen more of the real you back then."  The real Elli. 

Christi reminded me tonight of a post I wrote on Elli's blog a couple of years ago.  I had been blessed with a glimpse of an unhindered Elli.  The Lord watches over us.  He loves us.  And He blesses us with moments of perfect sight when we need them most.  And then they pass.  And we continue on in faith until the next moment comes.

So grateful for those moments.

-Jeremy

Good Kids!

We try, on at least a semi-regular basis, to have a family council each Sunday.  This is a meeting that the kids really look forward to.  During family council, each family member can bring up one concern they have or one idea they think would be good for our family.  Usually we just involve the oldest five, and the ideas and thoughts they bring up are very relevant.  We discuss each idea as a family and everyone is welcome to provide input and suggestions.  Everybody's thoughts are treated with respect, even if an idea isn't implemented.  It's a great way to introduce changes into our routines and to really get everyone's buy-in. 

One topic we've been discussing for the last couple of weeks is whether or not to begin a morning family scripture study.  We have always had a brief scripture after our family prayer in the evening, but it is tailored more towards the younger kids.  The morning study would still be short, but it would be more in-depth and hopefully more spiritually nourishing.  It would require us all to get up a little earlier, so there has been some resistance to the idea, but not a lot.  Overall, I've been really impressed by our kids' willingness to do something difficult but rewarding.

Last night at family council we decided to give the early morning routine a try for a week and then discuss how it went.  We all agreed to get up at 6:25 and meet in the living room at 6:30.  Taylor even volunteered to get up at 6:20 and make hot chocolate for everyone.  Before bed Parker said to me, "I really think it will be great to start our day with scriptures.  I'm really looking forward to it." 

WOW!

Let me just say that I was not too enthusiastic about similar morning scripture times when I was a kid.  I'm so grateful for such good kids with such great perspective:)

-Jer

Two Peas in a Pod

Lexi and Soph have a very special relationship.  I think it is at least in part due to their having been adopted together.  I love to see Sophi leading Lexi around the house by grasping Lexi's hand between her chin and her chest.  I love to see Lexi lift Sophi down from her high chair after she's eaten.  They are quite cute.  And they can get into some funny situations.

I'm sitting in my office trying to get some work done.  I hear Lexi and Sophi come downstairs.  They're playing in the other room.  I ask them to come into my office so I can ask them a question.  I hear Sophi start walking in, talking as she comes. 

As she gets close to the door, she suddenly stops and says "But Daddy...I maked!!!"  (That's how she pronounces 'naked'.)

 "Just come in anyway," I say.  Sure enough, she is naked as a jaybird (except for a pearl ankle bracelet?!?).  "Why are you naked?"

"Cuz I went potty."

"Who helped you?"

"Lexi!"

Uh-huh.  Somehow I just don't think this episode lived up to the same sanitary standards I would have tried to incorporate. Guess I'll just be glad that they work together so well.

-Jeremy

PS.  It just occurred to me that perhaps the title of this post should be "Two Pees in a Pod"...  Sorry:)

Ability

I met this young lady's mother at a medical convention recently.  What a great example Lauren is of the tremendous contributions and successes that can be offered by those with disabilities!

See the video HERE.
-Jer

The Woman

Jesi is such a dichotomy.  On the one hand she is still Daddy's little girl.  She loves to be tucked in each night.  She is sweet and innocent.  She can get her feelings hurt at the smallest things.  On the other hand, she is this pre-teen crusader with an agenda she is not afraid to share with anyone.  She tells us what she thinks of rules, seating arrangements, chore assignments and whatever else she wants to express her opinion on.  And her tone of voice lets you know who she thinks the boss is.

One of my favorite ways she takes charge is when she defends Christi.  If she thinks I've done something unfair or unkind to my sweet wife, Jesi lets me know!  Like this:

-"Dad, The Woman needs some rest!  You clean the dishes!"
-"Dad, you don't talk to The Woman like that!"
-"Dad, The Woman said she needs some chocolate!  Go to the store and get some!"

I have the feeling that I better get used to the concept of The Woman, or more appropriately The Women, letting me know where I stand for the next many, many years;)

-Jer

A Solitary Tear

"How are you?"

Asked millions of times a day around the world.

Usually more a greeting than a question.

"How are you?"

I asked with sincere intent on Sunday morning.

Nine kids in a pew and on time to church

makes it hard to focus on anything else, but

there are some things that make you

stop,

forget yourself,

love another.

"How are you?"

Such a dreadfully incompetent question

for one who has just lost her mother.

A beautiful 17-year-old girl,

burdens now far beyond the petty but oh-so-real poignancies of teenage life,

looking after three younger siblings.

Seated directly in front of us.

"How are you?"

"We're doing OK,"

said with a real, if subdued smile.

My heart went out, trying to comprehend their incomprehensible loss.

I focused on them for a few moments, until

"Dad, she won't let me sit where I want to"'s

pulled me back to my world.

My oh-so-challenging

and yet

not,

world.

And my mind forgot their sadness.

Until.

She turned to look at her little sister.

A solitary tear sat halfway down her cheek.

And my heart broke.

Ounce for ounce, has there been a more emotion-filled tear?

Which of the multitude of fears and frustrations

had pushed that one tear

down?

So composed.  So determined.  So strong.

Just one tear.

The opening hymn began

'Come unto Jesus, ye heavy laden

Careworn and fainting, by sin oppressed.

He'll safely guide you unto that haven

Where all who trust him may rest.'

So grateful.

Thank you, Jesus.

Thank you.

Thank you.

Thank you.

It is true.

His love is there.

His love is real.

Nothing can soothe the loss of a mother, a child, a spouse.

Except His love.

I am grateful that this mother, now gone, cared so much about her daughter.

Cared enough to spend a lifetime preparing her for this time.

Helping her come to know Jesus.

To love Jesus.

And to be able to reach out

and feel his loving arms

surround her in this time of

unsurpassed pain.

I pray.

That somewhere in the midst of those emotions,

in spite of pain,

overcoming the agony,

is the light of

hope

in that solitary tear.

-Jeremy

Random Sampler

Me:  "Elli, will you be my valentine?"

Sophi:  "DAD!  She's not a treat!!!"

(By the way, you could probably put every word Sophi speaks in all caps and not be exaggerating:)
--

I have come to the realization that I feel a distinct thrill of pride when Taylor and Parker tell me how envied their home lunches are and what powerful trading prowess they command.  When I first became cognizant that I found this somehow fulfilling, I felt a bit sheepish.  But I now embrace my domestic triumph.

--

Xander had a fever the other day and stayed home from school.  He designed a "thermometer holder" so it would always be around when he needed it...:

--
Green Girls with green lick-m-ade...:

 

 --

Jess has become quite the reader lately.  She's also a bit of  contortionist.  Combine the two and you get a sense of how she likes to relax...:

And of course when I took a picture of Jesi, Sophi demanded I take a picture of her, too!

-Jeremy

Out of the mouths of babes...

I fancy myself a decent singer.  It became apparent very quickly in Nashville that I'm nowhere near music star potential, but I feel like I can carry a tune, and perhaps even be of service to a choir.  Today as we were singing the opening hymn in church I sang the bass part.  I felt as though my deep, rich voice was nicely complementing those singing the melody.  Then Sophi gave me some insight into how those around me might perceive my musical capabilities:

"Dad!  Sing pretty!!!"

Pretty clear message:)

-Jer

Where to turn...

I love this video.   I especially felt for the young man in the wheelchair.   One blessing of having children with special needs is having daily reminders of the need to be grateful for my body.  Watching them struggle to do things that are easy for most people can be heartbreaking and poignant-- much like how you probably felt watching that man try to pick that flower.   But ultimately watching their struggles and the courage with which they bear them gives me strength to do the tasks that lie before me and a beautiful, eternal perspective on life.  I am so grateful to know who to turn to in my trials and I am grateful that my children also know and have such perfect faith in Him.  I love my Savior, Jesus Christ.

--Christianne

Fun times.

I have nothing cute or clever in me tonight.  It's been one of those days.  Started off when I woke up not feeling great myself.  Got worse when I went downstairs to get Elli out of bed and found out she had become sick in the night.  Not only had her messy diaper leaked all over, but she had thrown up and it was entangled throughout her thick black hair.  It was so sad.  Poor girl!!!  Poor mom!!!  Spent the day cleaning up the mess and then just doing enough to get by.   Jeremy was sweet enough to take the littles to the rec center and then make dinner to give me a little break-- during which time I promptly fell asleep.  Naps are the best!  Feeling more hopeful for a better day tomorrow.  (:

--Christianne

Oh, and since I'm sure you don't want a pic of the mess Elli made, I'll share this one instead-- Taylor, Grace, and Cali on their way to the youth etiquette dinner at our church.  (Parker missed it because of a basketball game.)  Can't believe I have FOUR in the Young Women/Young Men program!  I love these amazing kids so so much!!!!!!!!!

Elli meets the bureaucrats. (Or Jer's Soapbox)

Several of our children have been involved in IEPs over the years (Individual Ecucational Plans).  Kids who are receiving special services are required to have these in order to evaluate their progress and develop goals for their improvement.  With Elli, the progress is extremely slow.  This year, as part of the process, we have been asked to fill out a questionnaire.  The questions we are being asked about Elli have had me literally laughing out loud.  We are ranking her on an "Always to Never" scale for these:

-Stands up for others who are treated unfairly.

-Says nice things about herself/himself without bragging.

-Makes a compromise during a conflict.

-(This was doubly hilarious) Makes eye contact when talking.

-Stands up for herself/himself when treated unfairly.

-Does what she/he promised.

If you know Elli at all, you know that these questions are completely irrelevant to Elli's life.  As her educational plan is made, other bureaucratic balderdash becomes apparent.  In an effort to make things fit into their box, the legislature requires that kids have math goals, science goals, etc in their IEPs.  OK, that's really great in many cases, but have any of the people who create these guidelines ever been to Kauri Sue Hamilton???  Having a goal for Elli to be able to do addition up to 10 + 10 is more outlandish than setting a goal for me to part the Great Salt Lake.  It ain't gonna happen!

We are certainly grateful for Elli's FANTASTIC school and WONDERFUL teachers.  We will continue to check the boxes and fill out the surveys that must be filled out in order for her to attend.  I just wish those who were creating the standards and requirements would take the time to understand a little better just what these children need.

-Jer

I think I just sent Elli to school in Jesi's shoes...

One of those mornings

The alarm didn't go off.  Christi had to leave at 7:30 to take Sophi and Cali to Shriner's.  I had to see Jesi, Lexi and Xander off on my own.  I still have to get Elli up, bathed, fed, hair done and on the bus in 25 minutes.  We were up until about midnight working on a Rube Goldberg project with Graci.  (Thanks OODLES to my brothers Steve and Ty who spent a few hours of their weekend helping her design the thing 3 weeks ago.)  Felt like a tornado hit.  The kicker was as I walked the kids out to the car.  Jesi sat down and I looked at her pants.  They are light khaki.  It looks like she got rasberry jam on her hands...and then wiped them on the front of her legs...and she has a hole in one knee.

They ARE very loved!  That has to count for something, right?!?

Jeremy

Puzzle Them Home Help

I really need to do a detailed update on Puzzle Them Home, but I don't have time right now (finishing up homework assignments with our Grace-- gotta love Rube Goldberg projects!)  We continue to be humbled and in awe of everyone's efforts in our behalf.  It is AMAZING.  It is SUPER HUMBLING.  It is so much FUN!  I will fill you in on how it's all going later this week, but for now I need to ask a favor!  The Puzzle Them Home committee has been given some awesome opportunities to reach out to the realty brokerages in Salt Lake and Utah counties, and they need some additional help.  They think that this opportunity could be very key in getting our miracle and want to capitalize on it as much as humanly possible.  They are going to have a meeting at 1:00 tomorrow here in Herriman to explain to volunteers how they can help.  They are looking for people who live throughout Salt Lake and Utah counties, not just here in Herriman.  If you think that you might be able to help with this, first of all know of my absolute LOVE and GRATITUDE for you!  Please contact me at christi405@yahoo.com and I will give you details on the meeting tomorrow.  We need SEVERAL additional people to spread out the workload.  This will be something that will take up some of your time over the next couple of weeks.  I HATE asking for help, but we know that it's important in making this work... Thanks so much!!!!!!!!

--Christianne