forever in peace may you wave

Today at church a law enforcement officer was asked to speak to us about his feelings on obeying the laws of the land and how they relate to us spiritually.

He wrote
*life, liberty and the pursuit of happiness*
on the chalkboard
and began by telling us that the protection of these things was the reason for everything that he does in his work
and how it is [or should be] the purpose of government.

***

This Independence Day has been different for me.
I have been grateful for freedom in a new way.
For the
life
liberty
and the pursuit of happiness
that has come to my little girl.



She is gaining her own independence.
She has become more aware of everything around her.
Her life has become more full.
Her muscles are getting stronger.
She is rolling around everywhere [and fast too!]
and so has more freedom to get the things she wants
to pursue her own little happinesses
like yogurt cups,
glitter balls
and Karen Katz books.
She has learned a little sign language.
The first thing she does every morning [before we even get her out of bed] is exercise this new
freedom of speech
to inform us
that she wants
not breakfast
but books.



She is very persistent.
She makes her sign for books all day long,
no matter where we are or what we are doing
[even on an evening stroll].
My momentary exasperation melts away with the hope that it will be her persistence that will bring her more freedom,
to help her to keep trying
to continue her pursuit of happiness
and find it
on her own
whether it be reading books for hours or crawling across the floor or eating without help
and to never give up on it.

***



I am grateful for government who has provided ways
for our family
and especially for Janie
to be able to enjoy
life, liberty and the pursuit of happiness
more fully
with the help of the Early Intervention program
and her preschool program
[where she always keeps her eye the Grand Old Flag that flies out front].
Programs that have not only helped her
but have enabled her parents to help her
to pursue and enjoy
new found
freedom
even if it's just in our own
home of the brave
[someday she won't even be afraid of the vacuum anymore, I just know it.]
I have so much gratitude for these programs that are created to help those little ones who are born with challenges,
as well as their families,
to also enjoy
precious
life, liberty and the pursuit of happiness
physically,
emotionally,
mentally,
spiritually.
I am so grateful for those who hold these truths to be self evident,
that all men are created equal,
even those that may never have the *freedom* of speech to repeat those words.

the now.

now
we've got the sun
to clear away the clouds
So why look back
when there's a stunning blazing so amazing
now

-SHeDAISY

And I will also ease the burdens which are put upon your shoulders
that even you cannot feel them upon your backs
-Mosiah 24.14

Lately we've had the chance to meet up with friends from our dating/newlywed days. This has meant lots of catching up, which inevitably includes briefings on Janie and what might or might not be in store for her.

And I noticed something different. About me. About how I feel about all of that these days.

It doesn't seem so overwhelming anymore.

When we were first plunged into the reality that Janie was facing some challenges, the future very often seemed daunting. It felt as though an Oklahoma dust storm had swept across what had once been a panorama of possibilities, leaving everything covered with a heavy mixture of concerns, grief and apprehension. Our future with her felt like a great unknown. Would she be healthy? Would she talk, walk, go to college, get married? What will she be able to do in two years... ten years, twenty, fifty? I tried to keep the most painful possibilities from my mind, while at the same time trying to steel myself should the worst come into view.

Tears seemed to help clear some of the dust away. Followed by prayers. Repeat.

At least that's what seemed to happen at first.

Gradually, there were less tears. A few angels came along to make things clearer.
And faith came, little by little, like rain, washing more of the dust away.

Some of the dust just seemed to settle. We still don't know everything. But we have so much. She is healthy and she laughs often and SHE IS HERE. And she is progressing.

Now, when I think about the future with Janie, I am not afraid. I feel grateful for every day I get to be a mother, get to be her mother. It doesn't seem so hard to carry her everywhere. I don't get frustrated with the chunk of time and effort it sometimes takes to prepare her food and feed it to her. I know that she is part of the plan for my life. I know that she was sent to me, maybe even for me. To help me become.

yea, the Lord did strengthen them that they could bear up their burdens with ease
and they did submit cheerfully and with patience
to all the will of the Lord.
-Mosiah 24:15

Rediscovering your bliss
is the sweetest part of this
...
right now
we've got the Son
to clear away the clouds
So why look back when there's a stunning blazing so amazing
now

-SHeDAISY
[with a tweak or two]

hey, what's so funny?

Happiness is...

hearing Janie belly laugh
from the other room
and feeling grateful that she can be silly and have fun
on her own
even when she isn't able to do all the things she wants.

sssslow motion

Remember way back when it was so funny to hit the slow motion button on the VCR?

I used to do that with my friends, especially with our home videos. We hooted at facial expressions we hadn't known were possible and giggled at how our slurred voices made us sound like we were drunk
[or how we imagined we would sound, anyway]

I am beginning to wonder if somewhere there isn't a slow motion button for my life.
And I think someone got a hold of my remote control.

Yesterday I was planning to meet Jason for lunch at 2:00.

I did a little cleaning. I read a few books to Janie. I cut my workout short. We were running on schedule [wait... am I ever running on schedule?] ... let's just say I was kind of pretty sure I was running on schedule.

I showered while Janie rolled around our room.

On my way to the laundry room, I walked past Janie.

Her diaper.
It was calling to me.
In
a
bad
way.

Change diaper.

Finish getting dressed.

Janie is upset.

I determine she is hungry.

Downstairs to get the rest of her yogurt from breakfast.

Feed her the yogurt.

She looks around for her drink.

[Which I didn't bring with me.]

Downstairs for the drink.

Upstairs to Janie with the drink.

I head back to the bathroom to attempt something with my hair.

When I finish, Janie is laying on a blanket on the floor in our room.

I pick her up, ready to head downstairs to do her hair.

Her back is sopping wet.

I had left the sippy cup on the floor by her and she rolled into it.

Books are wet. Blanket is wet. Clothes are wet.

Set up books in the bathroom to dry.

Move blanket.

Change the shirt.

Change the skirt.

Change the pants.
[darn, that was a cute outfit, too]

Talk to Jason on the phone about three different times.

Now for her hair.

*spray spray*

Reach for the comb.

Where is the comb?

Crawl around the family room floor, looking for the comb.

Find comb. Finish hair.

Run back upstairs about three different times.

Meanwhile, I probably made facial expressions I didn't know were possible and wonder if this is what it feels like to be drunk. And also, why isn't there a fast forward button on my reality remote?

We leave the house at 2:15 pm.

We meet Jason for a 15-minute lunch date. Because after all that, I was not about to not come.

But even after days like that, I hope there is no fast forward button on my life's remote control.

I think about this a lot with Janie and how slow things go with her development. I hear people say to enjoy your children while they're small, because they grow up so fast. With Janie, I feel like we get to do that a little more than most. I still get to hold her and keep her close by. She is my little partner in crime, my little helper, my little bff. [and ever!]

I think about this a lot with myself and how slow I am at learning the lessons I need to learn in my life. I sometimes forget that life is about what we become, not what we do. And becoming [*sigh*] takes its sweet time.

Still, I hope whoever it is that has the remote for my personal lifetime channel returns it to me.

Or is at least getting some good laughs... just as long as they don't get too terribly trigger-happy with that slow motion button.

Although, right now, considering the lateness of the hour, I wouldn't mind the
::pause button::
while I catch up on some sleep.

someone to watch over her... and us

Happiness is...

...having those who help us give Janie the care she needs.
doctors.
specialists.
therapists.
teachers.
aides.
nurses.
and, of course, family and friends.

thank you all.

and thanks for caring for her parents, too.
which sometimes just means being understanding.
patient.
empathetic.
and excited about the little things.

we thank heaven for you each day.

room for waiting

In Education jargon, there is a little thing teachers call wait time.

It's when you allow students adequate time to answer a question. At first, it's intimidating. You have to learn not to fear that awkward silence that looms as the students wait to see if you will answer your own question for them. You have to let the silence, the waiting, show your students that you really are expecting them to think about what you are asking, and to give you an answer because you are not going to do it for them. Or, as the teacher, you have to use it to decide if you need to approach the question in a different way. It's not easy at first.

One day Janie was playing on the floor with some books. She does this often and sometimes as she is moving them they end up out of her reach [sometimes on purpose, sometimes not]. She soon lets me know she wants it back and with a yearning expression she appeals for me to get it for her.

Sometimes I do.

Sometimes I wait and encourage her to do it. I tell her to try and reach for it, or to lay down and roll to it and get it.

I always have to wait on myself and see if I can let her try and fail. To let her feel the fail. It's still not easy. And, sometimes, I don't make us wait.

On this day I went for the book and to my surprise, we reached it at the same moment.

I could have waited longer, waited on myself to see her succeed.

I think too often our fear of failure blocks out our hope of success, like a big black rain cloud moving in fast. I am trying to stay in the sun, to let go of the worries I have for her and let myself believe that she will reach. Reach all the things we hope for her, her potential, happiness, joy.

Today, again, Janie wanted a book that had made it's way out of her grasp. As I watched, she reached for it and failed. Without a trace of a cry, she carefully laid herself down and grabbed the book.

Waiting rooms are not so bad, you know.

The Sign for Love

Bailee and Afton with our Janie-scraggle-muffin.
But is she not the cutest scraggle-muffin you have ever seen?

***

A few days ago my niece Bailee, who will soon be turning five, asked me if I was glad that Janie was my baby.

I answered with a smile, "Yes, I'm very glad."

Then, sweetly, she asked, "When Janie is five, will she still be a baby?"

A question asked so simply, but it seemed somehow profound. I considered what Bailee wanted to know and answered, "Well, she will be bigger. But she probably won't be able to walk."

"Will she be able to talk?" was her next question.

I replied that we don't know if she will be able to talk.

"Does she know sign language?" Bai asked.

"Hmm, well, she can do a few signs," I answered. Well, actually, it's more like she can [kind of] do ... one sign. Sign language has been slow, on both our parts.

Bailee crossed her arms over her heart. "You should teach her this sign," she advised with a loving smile.

Once again, her words seem to resonate somewhere inside.

"We should," I nodded in agreement.

And,
as I watched Janie from across the room, I wanted to add,

We do.

With every goodnight kiss and good morning snuggle, with every morning reading session, every singing of her favorite song each time we pass the Temple, every time we decline an evening restaurant invitation because busy restaurants are too unsettling. With every peppermint patty broken into small, sticky pieces, with every refill of her dumped-out buckets of blocks and toys and every retrieval of out-of-reach glitter-filled balls, with all the little things we try to do to make sure she is comfortable, we hope she gets the message that we do.

And,
though it's not in the form of her hands crossed over her heart, Janie has her own signs for love. Her little kisses. Her waves goodbye. Her tolerance as excited little cousins keep stepping on her legs and feet. Her submissive acceptance of wearing restrictive braces each day and night. Her patience when mommy takes too long at the store because she keeps remembering things she forgot to write down on the list, and when mommy has ten more minutes to go on the treadmill, and when mommy has to shower and... she has a good amount of patience for a 3-year-old. That, and it must be a sign: she loves us, too.

Maybe she is getting the message. Because one sign [a real sign language sign!] has finally clicked.

More.

Another simple statement that is profound on so many levels.

More. Love.

So now to figure out how to say:

we will.

five words and a question mark

One summery afternoon earlier this year Janie and I met up with her cousins, their mommies and grandma at a restaurant for lunch. We drove extra far because it had to have a play place. When our waffle fries and chicken nuggets were gone we followed the little ones into the small indoor playground. Bailee instantly disappeared into a tunnel. Ammon followed Afton up to the first level where he could look out at the onlookers. And there he stayed. With Janie in my arms I sauntered over to him and we waved up at him from down below.

Suddenly there was a deep voice behind me. "Aww, she doesn't get to play?"

I turned, aware that he was talking to me. I smiled and gently explained that the reason she [Janie] wasn't playing was because she couldn't walk. Normally I take Janie around to play at playgrounds, but this place was cramped and full of kids and I wasn't feeling up to bum-scooting with a two-year-old through smelly tunnels with my shoes off. So we sat next to Grandma and watched.

The man's question echoed over and over in my mind. I had never said those words, but they felt familiar. They seemed to retreat to a place deep in my heart, the place where it hurts when I see Janie missing out, left behind, unable. And suddenly all the wordless yearnings that my heart had pushed heavenward during trying moments could be abridged into these five words and a question mark: she doesn't get to play?

Tonight Janie cried and cried, and I just couldn't figure out what she wanted or needed. And she couldn't tell me. And it was just awful. She can't go where she wants. She can't do what she wants. These are the moments that just break my heart completely.

Janie loves balls. She loves to toss them to the side and watch them roll. And roll they do. And if she can't reach it she gives up. Because it's so much effort for her to get down out of sitting and roll to retrieve it. Her other favorite toys include a top, bubbles, and books: parents required. So when the oven timer calls me away to take care of dinner, Janie cries in protest. Because when I leave, so does her play. And I hate hearing myself repeat, "I know, baby, but Mommy has to make dinner!" from the kitchen as she sits on the floor, miserable. And those five words with the question mark seem to echo through the house.

Some of the trying moments are bittersweet ones. Helping my niece down the stairs, holding her little hand or twirling another niece around during Christmas songs, dancing around the room during Barbie movies. And when we laugh about what Afton says or what Ceci does and wonder what Janie would be like at this age if... It's how I want to cry because Janie is afraid of the new fire truck that her grandma was so excited to get her and how on earth am I going to tell her grandma that?

It's when I wonder if I worked harder with her... would she be able to play?

And so tonight I sit with tears stuck in the corners of my eyes, wondering how on earth I am going to end this post... And I just keep thinking of these words. From a song by Cherie Call that had me and the dishes in tears a few months ago.

That's where faith lives.

They seem to sink to a place deep in my heart, the place where it hurts when I see Janie missing out, left behind, unable.

Just four words.

And no question mark.

In French, bebe faim

"Mommy is baby hungry." Jason informed Janie this morning. I had just finished telling him about a blog I had read a few minutes before. The author is hopelessly baby hungry, and I guess in my telling of it Jason formed his conclusion.

"No," I protested slowly. "I'm not baby *hungry*..."

It was strange to say those words. Strange because a twinge of guilt seemed to creep into my stomach as the words left my lips. I couldn't help feeling that our future children might feel bad to hear me say that.

"I'm just... well... I just..." I took a quick breath. "I'm actually kind of scared to have a baby."

We had planned on getting pregnant this past summer, but held off for Jason's employment scene to stabilize. And so, the clocks tick and Janie gets older and more comfortable in her place as queen bee. I want Janie to have a sibling. Siblings. I want her to learn she is not the center of the universe (and I don't mean that in a bad way, that she's a brat or anything like that.) I want her to have others who will take care of her. Especially to have others who will take care of her when we can no longer do it, if that is what she will need.

But I am terrified about the getting there part.

Today confirmed my fears. I had a busy day, lots of running around. And Janie didn't get much mommy time. By the early evening, she was whining nonstop. She wouldn't eat [which is the fast track to mommy meltdowns. Nothing stresses me out more than when she won't eat]. And in my heart I knew her frustration was because she really wanted to sit and read books and play together. I didn't have time, and even though I was trying to talk with her and entertain her, she was stuck where she was and so was unhappy. And so I was unhappy. And I thought, will this be a daily occurrence with another baby in the picture, say, one that needs to be fed every two hours?

And I know, I know. That, too, would pass. Sure, it would be hard for a little while, but things would get easier.

But that just doesn't ease my anxiety.

It's not just busy days or less time for Janie that makes my heart pound. It's the so many little things, too. I am so nervous about having two kids that will have to be carried around. How will I ever work a wheelchair and a stroller? Some days grocery shopping is my oasis, and Janie's, too. Getting out of the house is nice and good for our mental and emotional states. Would we have to quit doing that? The odds are extremely good that other children we would have will not have the delays that Janie has... but what if another baby did? Sometimes I wonder about which would really be harder. The here and now is what I know. If things are different, I will need to learn how to mother that child. From where I'm standing, it feels like I would be learning how to walk all over again, a new and different mommy-walk. In many ways, this child will probably be like an oldest child. Will I expect or ask too much? Will I stop expecting enough from Janie?

And there's the bittersweet. Thinking of a new child, learning to crawl and walk and talk, while Janie cannot do those things. Will she feel left behind? Will it make her sad? That thought is utterly heartbreaking to me.

Is it bad that for me, right now, having another baby would feel a little like taking vitamins? You know that it's a good, desirable thing. You know that if you do it things will be better because of it. But getting those enormous, distasteful things down is just no fun. Of course, I guess that's why they're good for you. If they were tiny or dipped in creme brulee... let's face it. They wouldn't be as good for you.

The label of my vitamins tells me they are best taken with food. So it stands to reason: you're just not going to be all that, well, hungry.

Uh. Hmmmm. And now to figure out what the "food" is in my little analogy.

If you figure that one out, be sure and let me know.

My angels start with A

Not all angels are from the other side of the veil.
-Elder Jeffrey R. Holland



Last night my niece Afton watched me from her mommy's snuggly lap. I smiled and waved at her from my spot at the kitchen table. She eyed me and buried her face in her mom. She can be so shy, that one.

A few minutes later she walked past me sitting on the floor. "Afton," I said in my sweetest auntie voice, opening my arms, hoping. "Come here and let me love on you."

She stopped for just a moment. Then she grinned and walked into my arms and held on tight for one of the sweetest hugs I've ever had. It left me feeling happy from head to toe for the rest of the night.

My nephew Ammon is a busy boy. He is always on the move, one arm swinging back and forth as he tromps along resolutely.

But every now and then, when I'm there, he will just stop what he's doing and say with a smile as sweet as butter,
"Meg."

He usually catches me by surprise, and I can never keep from breaking out into what is probably a slightly dopey grin.
Our eyes meet and I reply, "Ammon."
Then it's business as usual and he goes on eating his mandarins or sifting through the legos or heading to the kitchen for one of Grandma's pots.
I smile again whenever I think about it.




I can't help feeling that these little ones know.
Somehow they know that Janie can't always show the love that she feels,
love that I am needing,
even when I am unaware that I need it.
So they do it,
for her, for me.


thank you, thank you
little Angels

I have left the building...

My baby is starting school. I know people everywhere are saying that at this time of year, but at just two and a half short years, I really can bemoan with all my mommy angst: my baby is starting school!

Janie is now old enough to go to the toddler class at the special education school. I wanted her to go. She needs a place where she can have new [and eventually familiar] experiences. Her first day was Tuesday. I told the teacher I would stay if they wanted me to, since Janie needs assistance with mostly everything. My apprehension inflated and my heart sank a little as I watched all the other children walk into the classroom. It was easy to see that Janie was the most delayed child in the room. Was I doing the right thing in bringing her to school? The teacher kindly skirted around my offer and took Janie from me. I walked out of the room in a stupor and began down the hall, feeling that panicky feeling of knowing you left something behind. My body was moving but my mind kept saying, "Wait, am I really supposed to leave, as in leave the building?... wait, really? really really? They hardly know her. Should I go back and make sure they know that she can't feed herself, that she falls backwards from sitting and can't catch herself and..." I quickly came up with an excuse to stay and turned around. One of the secretaries helped me find Julie and together we watched Janie through the classroom window for a few minutes. She was sitting in the lap of one of the teacher's aides, playing with a bucket of blocks. Julie cooed over how well Janie was doing, introduced me to the mom of another of the families she works with, and then told me to go shopping.

To go. *deep breath*

I had come in on the wrong side of the building, so I had quite a walk back to the car. It was unnervingly surreal. I finally called Jason. I needed someone to help me get out of there emotionally. "This is so different from nursery," I fretted. "At least with nursery we are still in the building!" I found the exit. Got in the car. Drove home. Picked up a few of Janie's clothes from off the floor and found myself sitting in her room, looking around dazedly.

I didn't feel like myself. I was on the teacher end of this scenario not so long ago. I used to think it silly that parents would worry about pushing their little ones out of the nest. Don't worry--they will learn to fly, I wanted to say! School is a wonderful place. Now as the parent, I still knew this. But now I also understood that sending them off to school also means sending a piece of your heart out into the world. And the world is big and mean and scary and hard sometimes. And sometimes it hurts.

Fast forward to last night. I watched the movie "Joseph Smith The Prophet of the Restoration" (at the Joseph Smith Memorial Building) for the first time in a few years. For the first time since becoming a mom. And there before me was Lucy Mack Smith, courageous Mother Smith, refusing to let the doctors take Joseph's leg off, taking a chance to help him have a better life, even though it was uncertain and terrifying. I silently wondered how many times she asked herself if she was doing the right thing. I watched with new eyes as Mother Smith was also compelled to leave the building while everything inside her wanted to stay. She, too, turned back once, unable to stop herself, wanting to somehow save her little one from all the pain and fear that was ahead. And she had to leave, again, until it was over. She couldn't be there with him through it all. As her tears streamed so did mine. Though years of healing followed, undoubtedly Joseph was grateful for the choice his parents made. I guess this is the yearning of all mother hearts. That, despite the pain, their children will come out in one piece, be it physically, mentally, emotionally, spiritually.

Janie immediately reached for me when I came to pick her up from school an hour and a half later. Once we were in the car, however, she acted like she was mad at me for leaving her. My heartstrings felt the tug. But stronger than that was the feeling that she needs this experience, perhaps as Mother Smith felt that Joseph would need his leg.

I have come to see many times that motherhood, and for me, being the mother of a child with special needs, is a constant reminder that I have figuratively *left the building,* where I recognize that my life will never, ever ever be the same again. Everything I do and see and understand and learn will be colored by the fact that part of my heart and my view is changed, different now and forever. Becoming a mother is not the only thing that has changed me this way. We are all given experiences where we pass through things that others we know will never have to face. Undoubtedly it tugs at Heavenly Father's heart strings to see us sad and hurting, not understanding why He has seemingly left us, while He knows that we need it, not that He sends the hard things, but that to simply save us from them would jeopardize something greater.

And so,
starting school
it seems
my baby
is not the only one
who needs new [and eventually familiar]experiences.