Without her

He pressed down firmly on the home-made play-dough with his teeny 6-year-old hands, making creations, bending and twisting, begging me with his eyes to help.  The almost-two-year old stared and took it all in, tentatively reaching for hot-off-the-oven dough.  It was the first time she had ever met the squishy stuff.  It was long overdue but today was her lucky day because her first sister was at school and Mommy was feeling creative.

And they molded and stretched and pounded with ease of movement,
sharing utensils and giggling.

Freedom.  For them. For me.

No one had to yell "June...NO!"
Nobody had to get their finger half-bitten off by reaching their fingers into her mouth to swoop out the swiped playdough.
No one had to snatch the tools from her for fear she would  destroy them with her teeth. 

Not one of us had to keep an eye on her so she didn't steal away to the bathroom and suck down all the toothpaste or eat the toilet paper or the plant or the magazine.  Especially the new Martha Stewart one.  You know the one with all those delightful, colorful macaroons.

It was easy. It was give and take. It was pure joy and delight.

And for an hour I played with my two children and wished it was them.
Always.
Only them.

All was at peace as I took in the sight of them.

And then we bundled up in warm cozy jackets and walked outside.  Just the three of us.  James reached over and wrapped his big hands in Char's bitty hands and mentioned they were freezing cold and they sat there hand in hand in hand in hand as I strolled home with the boy too big for the double stroller.  And it was pure sweetness.  Charlotte commented on ducks and dogs and James was utterly amazed that she was saying words and pointing and connecting and smiling and looking us in the eye. Because he had never experienced this before.  This new sibling kind of love that he could never share with his first sister.  Not yet.

And his first sister is about to get off the bus.  This sister who we need to love.  Who I know has been good for us, just as we have been good for her.  We are learning to love each other. Still. To connect. To care for. To communicate with. And just with every hard thing in life, it takes time to sort it all out. But sort it out we will.

And even though I wished for a moment that it was just the two of them taking up all the space in this house, in this heart, in these thoughts, 
reality sets in and I realize

I could not imagine my life without her.

This mystery-girl.

She is good for all of us.

My friend sent me this today. 

Ecclesiastes 5:19, 20 
"Moreover, when God gives someone wealth and possessions, and the ability to enjoy them, to accept their lot and be happy in their toil—this is a gift of God. They seldom reflect on the days of their life, because God keeps them occupied with gladness of heart."

Weight

My husband and I spent three hours on Saturday making June a weighted blanket. Weighted blankets are used to give sensory input to people who have low-sensory systems and are sensory-seeking because of it.  It can also help with restless legs and make a child or adult feel more calm and snug.  June sandwiches herself between her tent and bed every night, making her legs numb and cold.  We were hoping to help her find a similar sensation through a weighted blanket.  I believe we were successful.  Online, these blankets are anywhere from $130-$200.  Here's what we did.

We sewed two pieces of 40" X 70" flannel together (opposite sides) on three sides.

We turned it right side out and sewed 5 inch columns down the quilt vertically.  Next we had to figure out how many pounds our blanket should weigh.

The formula is .10 X the child's body weight + add a pound (we added an extra pound because we were making a slightly larger blanket).

We needed a 6 pound blanket.  We used poly beads (found on ebay) and Rich figured out we needed about 1/4 cup of beads for each pocket.  We poured beads down each column, then sewed horizontal stripes after each pouring.  You can imagine how tricky this got toward the end, moving a near 6-pound blanket and smoothing back beads that were creeping their way out of the pockets.

Rich smoothing beads down. June doing her usual pilates moves.

Three hours later, we folded the top over and sewed it shut.  I must say that it looks pretty cute!  Also, I am happy to report that June has slept two nights with it soundly and has taken one nap in the stroller with it.  She is also enjoying it while reading books or watching TV.

I'm thinking it was worth it.
So she can sleep feeling weight on her shoulders.

And I wonder...

How many nights do I fall asleep with the weight of the world on my shoulders?  No weighted blanket needed.


"I praise you Father, Lord of Heaven and earth, because you have hidden these things from the wise and learned, and revealed them to little children.  Yes, Father, for this was your good pleasure....Come to me, all you who are weary and burdened and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light."  Matthew 11:25-26, 28-30.


On a lighter note, take a look at what we've been up to:

June shows empathy (for the first time) when her sister goes to time-out 

for stealing her toy.

Charlotte throws a T.T. because she can hardly stand being in time-out.

June actually watches the toy train without destroying the track. Big success!!

Charlotte dresses herself up every day (note upside-down coat) and says "Bye bye!" 

We had 9 inches of snow a week ago, resulting in several days of missed school

And tons of fun!!

75 cents

We've been fighting over 75 cents.  My husband and I.  It seems to be the theme for the last decade.  And I'm tired and I want to curl up in this super cozy blankie and surf itunes for relaxing songs that I might like. 

My son lost his second front tooth the other day.  You know what that means.  Lisp while talking, super cute face, and eating apples again...all pointing to the inevitability of growing up.  He informed me that all his friends in his class get a buck under their pillow and he only gets 25 cents.  He's not sure why the tooth fairy keeps jipping him.  So, I tell him that I think the tooth fairy knows he has everything he needs and make up lame excuses, but, he's not buying it because we both know his friends are middle-class rich and have an over-abundance of everything they need as well. 

Well the big morning finally happened where he was brave enough to pull it out with his own two unsteady hands.  We treated it like a newborn baby all day, and then away it went under his pillow for the fairy.  I was all set to slip $1 under his pillow when my husband asked why the inflation.  I stopped in my tracks, not feeling like fighting.  He said we're setting him up for a keepng-up-with-the-joneses attitude and I'm thinking, I've already disappointed him at least 10 times today.  I said "no" to the $80 sneakers, the yoghurt-covered raisins and the movie, what's 75 cents?

So, I put the measly quarter under his pillow.

Morning came quickly with a small whimper as I acted happy for him and he burst into tears because of his huge disappointment. 

I don't know why I'm telling this story.  Maybe I want you to be on my side. 

I'm thinking the disappointment will come in time.  I don't think I need to create scenarios so he can learn to be disappointed.  I know a mean kid will call him buck teeth.  I know he'll feel left out one day when he finds out he didn't get invited to a birthday party.  I know some girl will break his little heart.  For now, I'd like to spoil him a bit and give him $1 for each tooth that falls out, because I'll only get to do that 16 more times.


And then it was like a mirror was put up to my face and I was looking at all my dollar hopes and dollar dreams.  I tried to let go of the nagging feeling that I was putting my hope in things to come, not being thankful for each moment and realizing that there are quarters out there for me to gather.  There is Heaven this side of Earth. 

But I'm too busy doing the dishes, trying to get rid of stuff because it's past Christmas and the materialism is choking me.  Too busy fixing a hair bow, making lunches and worrying about whether or not we're going to sell which house. Too busy sorting and folding the clothes because we have been blessed with too many...while my children pull on my shirt and whisper, "Come look at the sunset",  and "Come play dollies",  and "Come look at the tree branches as they blow and sway".

Really, truly, I am about to move to a tiny house on a plot of 100 acres, where there is a rolling river and tall trees.  We'll bring wooden blocks, a couple of dolls, a few books, a deck of cards and a bag of clothes.  My husband even looks like a lumberjack lately.  

 May your day be filled with quarters from our God above, and maybe, just maybe you can put them together in a basket to make a few dollars. 

18 seconds

This afternoon I got a phone call from a friend that made me cry.  The good tears. My friend Rachael phoned to tell me A REALLY important something.  She just saw me yesterday and so I knew it must be a DIRE emergency for her to be calling me at 3:50 pm today.  She started right in, "Did you see the video?  June is walking!!"  I said, "What? What are you talking about?"  She continued, "I'm sitting right here in the waiting room in the therapy building and I just saw June walk by me! Like down the hall...with no one holding her hand...like she's been doing it for years!!" I gasped and clung to the chair.  Was this really happening?  Rachael of all people was delivering this news. Rachael, who has a daughter much like mine, who knows full well the anticipation and the waiting for the miracle of walking to occur.  We both cried.

My mind started reeling.  My 4 and a half year old baby's life started flashing before my eyes like in one of those Hallmark commercials sort of way.  I thought of those first agonizing motions she made to crawl, I thought of the first time she looked into my eyes, the first and only time she said the word "more".  I thought of her perched on the table, perched on the piano listening to notes and vibrations penetrate her core, and then, even last night snuggled up beside me so tightly because we both had insomnia.

I would no longer be introducing my daughter and getting strange looks that my four year old was in the stroller and my one year old was crossing the street all by herself, leading the way.  I would no longer say, "This is June and she doesn't walk or talk yet, but she's working real hard to do it real soon."  I might, just MIGHT, by Winter be able to tred through snow and stand and look up at the Connecticut Winter sky as snow flakes fall on our eyelashes and in our mouths and we giggle that cute June-bug giggle.  And maybe, just maybe June bug will twirl.  By Christmas. 

When June got home from therapy, I peeked out the upstairs window and watched her get out of the car and wobble her way into the house...with some guidance.  I grabbed my kids and we all raced down the stairs 100 miles an hour and greeted her at the door with kisses and hugs.  She must have known her secret was out because she smiled her impish grin and then of course I had to get my camera and we had to go exploring in the yard and the sidewalk, because I had to see for myself...all 18 seconds of it.

And that was a good day.  I have that good feeling and I am thanking God, and singing Hallelujahs and sort of floating around...that kind of feeling when you think you might be in love, or you first find out you are pregnant (for the first time), or you are about to take a trip to an island.  I would like to thank Kayla, June's attendant for having the ingenious idea to put a belt on her in the therapy office one week ago today.  And of course, I am forever indebted to Kat who has encouraged her to walk as much as possible with holding her hand and loving her like her own.  June has been blessed beyond measure with teachers and therapists from CHKD, Early Intervention, and Norfolk Public Schools.  You guys rock!

Steps

I had the privilege of watching a little 4 year old boy this week who stole my heart in about two hours and who decided to break it the third night. He came down with croup in the middle of the night and I swear I was watching my own child there, gasping for breath, praying over him that he would somehow make it to morning.  It was frightening at times.  Croup is a weird thing.  It gets really bad at night and then by morning, your kid is bouncing around and smiling, acting mostly normal, all except for the nasty barking cough which will again, become too much to bear the next night, filling up lungs and shrinking airways. 

Isn't that how it is?  We dance in these circular waves of existence, acting like things are fine at times, and refusing, or pushing down emotion, stuffing and compacting old and new trash, and then when we take a second to rest, we're choking, gasping for air, asking God to take away the pain because we can't breathe, can't sleep.

It's hard to balance your life perfectly.  Having it all equal out into 8 perfect apple-pie sections where we spend the right time in the right place, with each child, husband, friend, and God...having the right amount of time set aside for cleaning bathrooms, dusting shelves, baking bread, running 3 miles, reading some non-fiction, researching the latest obsession on google, emailing a teacher, socializing, being hospitable, being crafty, adventurous and daring, blogging, and baring your soul to one another. 

This got me thinking about how simple June's life is, how simple it will always be.  She will always be searching for the beautiful in the landscape...the lines, the contrasting color.  She is generally content when her basic need of being fed, clothed and toileted is met.  She could live in a yurt and in fact, would want to.  She will most likely never have an over-crowded life, too much to think about or time-manage.  She will forever take pleasure in the little loves of nature like the wind blowing, or the trees swaying, or water splashing.  She will take her time learning to talk, learning to walk. 

My little June certainly teaches me something almost daily, and tonight as we practiced walking with her new "belt" on, I saw her face light up with joy as we praised her for her accomplishments, every little step a little closer to the real steps that she will take one day soon. 

We ended the night in a living room huddle.  The clock kept ticking away and we kept prolonging the bed-time ritual.  I almost never do that, but tonight, it felt good to watch June walk in circles with her belt on, face beaming.  Tonight, I read a magazine while the kiddos played on Daddy, taking deep, strong, healthy breaths and hearty laughs.  Tonight, I made pumpkin pancakes and eggs for dinner, because a green veggie and chicken (again) seemed too boring.  Tonight, I let the dishes rest in the sink while I reflected on the day.  Tonight, I spent extra time reading to June bug the story of the Velveteen Rabbit...because she was listening.  With all my family snoring upstairs, tonight I will join them.

For the joy-less

I went to a women's conference a couple years ago and I remember the speaker having us chant the mantra that we will choose joy...and to go forth.  After I left and I was digesting these words with all my friends in the car, something felt funny, and wasn't right.  How do you just choose joy?  Like you're ordering a big mac, or an ice cream sundae with a cherry on top.  My friend confided in me that she had been in a deep depression and couldn't just get out of it.  How do you get out of it?  That slump.  That deep dark hole when the circumstances for sure, aren't changing.  I started thinking, pondering about my own life. 

I have struggled with deep deep depression, to the point of having to be picked up off my bed, packed up, and carried home by my mother. I slept nights with music playing and I slept the day away wishing it were night.  I came out of my room to eat fruit, maybe. 

I have experienced heartbreak like no other, having a relationship for many many years and having to let go of him...forever.  I felt like I would be ripped in half or my heart would literally fall out of its chest.  It scarred me so deeply that I still think about it and dream about it to this day....15 years later.

I cried tears of pain as I watched my friend's 3 year old girl laugh and chase  my 4 year old boy around the cupcake store, mourning the loss of what would never be between my son and my disabled daughter, and also between my friend's daughter and my own daughter who were previously and subconsciously labeled "best friends" in the womb. 

I was going through a near nervous breakdown when I was 6 months pregnant with my third child.  My back was thrown out and I couldn't lift June anymore.  The entire contents of my kitchen was strewn about my house as they zipped up my kitchen, and labeled it a toxic wasteland.  We were also in financial crisis.  Our renter hadn't paid us in 10 months.  My sweet sister came and got my kids from me for two weeks.  I felt like I was giving them up for adoption. 

I have hated my own husband to the point of wishing we had never gotten married.  It was all a big mistake.  I cried myself to sleep with my Bible open on my chest hoping that somehow God's word would get through to my inner core.

But somehow I was supposed to choose joy in these circumstances.  Christians had been chanting it for years, since I was a child.  Well, through this process of grieving losses, trying to forget what could've beens and managing my own seratonin levels, I figured out something.

Joy chose me.  It was a gift.

In all those instances where I was able to walk away with joy in my heart, there were deep deep moments of grieving.  Some events were years, others were days, but the thing that kept me going was not that I had chosen joy, but rather I had put my hope in a God who would grant peace for the moment and for sure someday lift me up out of the dark, slimy pit. The only choosing I did was to not put my hope in the unhappy situation changing. 

And God has been faithful every single time.
He gives JOY, not necessarily immediately, but ultimately.

"Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up.  You will increase my honor and comfort me once again." Psalm 71:20-21

"Weeping may tarry for the night, but joy comes in the morning." Psalm 30:5b



And it washes over us unexpectedly.

Retreating

I am a fairly organized person, or at least I thought I was until the other day when I went to bring my son's medical form to the doctor's office so they could fill it out stating that he has had his appropriate immunizations and is all set for Kindergarten.  The receptionist looked at me and said, "Ma'am, we can't fill this out because your son never had his five year old check-up."  What?  There must be something wrong with their computer.  My son is 5 and 3/4.  He had his shots months ago, I remember. Doesn't the whole office remember? He screamed so loud we had two nurses holding his limbs down. "Please check your files. I am positive he has had his check-up."  I never miss appointments.  She checked again and reiterated what I already heard.  Embarrassingly, she set up an emergency appointment and we are set to take him there on Monday. 

So I guess you could say I am forgetting things.  I am a little bit not like myself.  That's what happens when you travel the whole summer.  I actually feel refreshed and revitalized after last week and I wanted to share with you about how we were ministered to last week.  I can't tell you how important this was for us.  Let me start off by saying that if you have a family with typical children, this vacation will not likely sound exciting to you at all.  But if you are a family with disability, please read on.  You need to go there, to sign up tonight.

A few months ago, we learned about the Joni and Freinds Family Retreat at a FIN conference here in Hampton Roads.  It was a retreat for families who had disability and was relatively inexpensive and included room, food and many other things which I will explain.  We didn't really know what to expect, but we signed up anyway, thinking it sounded pretty neat.

The location of this specific retreat was in Flat Rock, North Carolina at a Retreat Center called Bonclarken I and it was in the beautiful mountains on a lake.  We drove up with our van and they were cheering us up the driveway, calling us by name.  As we got out of our van, three angelic women appeared and said, "We are here to help you."  These women were STM's (short term missionaries) and each one of them was prayerfully assigned to each one of my children.  These women were excited to be there, completely over-qualified and ready to serve us in any way, shape or form.  I literally burst into tears and couldn't stop crying tears of joy as they led me through registration.  I almost felt naked not having to look after babies while signing papers and filling out forms.  We were dear friends by dinner.

The mornings were spent with the children in programs specifically designed for them.  June was in a "quiet" program and she did all sorts of therapeutic things, like run her hands through rice/noodles and swing, listening to music. Rich and I listened to a speaker, worshiped and then met in small groups with other people who had incredble stories to tell. The afternoons were spent together as a family with or without the STM's.  Charlotte always napped and was watched by her STM, but we were able to do zip lining, June did horseback riding and James did archery.  There was also nightly programming, but our kids had a hard time lasting that long and we were usually back to the hotel by then.

I highly recommend this retreat to anyone who has disability in the family (there are several locations across US).  It was so unique being able to eat dinner together in a cafeteria where there were wheelchairs and people spilling things, and strange noises.  The judgment was erased.  Everyone was free to be themselves.  No one stared at my child unless to say she was adorable.