Rise Up

A year ago my friend gave me a phone number. She said, "You need to call this woman. She has a daughter who reminds me of June."

I wrote the name and number in my journal and said I'd call.

A few weeks later, she asked me if I had called her yet.

Again, I told myself that I really should call.

I never called.

Yesterday I learned of the tragic events of a woman in Norfolk who took her own life and then took the life of her daughter, ending it all. All the pain, the misunderstanding, the grieving over what could never be. All the back-breaking moving of a body, the emotional planning, the Super-Mom facade. Gone.

This woman was the woman that I didn't call.

I sobbed almost immediately when I heard the news. Not because of guilt. But because the whole story was much too close to my heart. Because I never did meet her. Never shared a moment of understanding with her. And I knew she was a woman probably much like me. I knew she went to church, had friends, seemed happy and put a smile on for the general public.

I am assuming a lot here because I don't know her story.

But this I know.

We, as a community need to understand how hard it is to raise a child with special needs. Many times we, as Special Needs Moms look super confident and friendly, because how else would we want to appear if we were seen in public?

If I have actually gotten it together to enter the world with my very different and unique daughter, then you can bet your bottom dollar I want everyone to like me, to be my friend and also think I'm generally amazing and wonderful. I want you to think that I could meet you by the fountains at the zoo on a Friday morning for fun and games. I refuse to look like the needy, sobbing Mom in the corner with the wildly stimming and special needs daughter. Because who would want to spend time with me then? Who in the world would want to get to know me or my strange family then?

Sometimes I wonder...
How many more years can I enter the public realm successfully?
How long can I use the changing table in the public museum for my daughter who is five years old?
How long can I push her around in an umbrella stroller before I have to switch over to a wheel chair? The answer is...about 5 more pounds.
How long before she gets too loud to take to dinner, where her thrashing is too hard to control while she is slung over my knee at the dinner table?

So, I'm begging you all, on behalf of the special needs community to rise up and help the ones who seem to be happy.

Although you mean well, please don't empathize by saying that your child does the same exact thing. He or she may actually do the same thing...like, for example, chew on a toy. But it is a stage. He/she will outgrow it. My child will quite possibly chew on a toy into adulthood.

Although you mean well, please don't offer to help unless you really mean it. Don't say in passing, "Hey, I'd love to watch your child one day so you can go get a massage."...and then never call.  Actually, you can in fact, pick up the phone, call, and say, "Let's schedule a day where I can come and watch your child for the afternoon. Right now. Look at your calendar."

Although you mean well, please do not invite me to your house and say there is nothing that my child can get into, and that I won't have to watch her. I will. I promise. I will hardly get to talk to you. You may however, invite me to your house and watch, interact, hold and love on my daughter for a while I follow you around and we chat about things that matter.

If you see a special needs child in public, it is meaningful when you kneel down and greet him with a smile and words, knowing full well that it may not be reciprocated.

If I look like I need help, I needed it 5 minutes ago. Take one of my children's hands and walk me to the car, open the door for me, take a bag, fill a plate, feed my daughter.

I know you mean well, but please don't recommend a new drug, book, therapy, food or vitamin that my child should or shouldn't be eating. I can assure you that I know my child well and I am doing what I believe is best for her.  I also know myself and what I can handle in the world of remedies.  I am busy being a good Mother. Cooking meals, cleaning the house, reading books, wiping butts, potty training, folding piles of laundry. Can't be therapist, teacher, friend and doctor too. I know there are moms out there who do that. I'll admit to you right now that I am not one of them.

If you MUST recommend a remedy, pray about it for six months and then if you still feel the urge to share some info with me, then by all means, share it.

Please do not compare my child to other children with special needs. Do not tell me that you know of a child who didn't talk and all the sudden she is talking because she did x, y and z. Not helpful. One of my attendants said it best. My daughter has something called elfism and they are still trying to figure out her treatment plan.

When you see a child out in public who has an outburst, try not to stare or judge the Mom. I know it's hard. I do it too. You have NO idea what is going on with the child or the parent. You know what you can do? Pray for the Mom or Dad. Pray that he or she will have patience in dealing with the situation.

Do what one stranger did. My husband was at the beach playing with my daughter in the sand and water, obviously struggling to keep sandy handfuls away from eyes and mouth.  The stranger pulled my husband aside and said something like..."I see you. I see you loving on your daughter. Thank you and bless you".

I want you to know that I am not necessarily speaking of my general experience...although, all of these things have happened to me.  I have had an amazing support system of friends and family and feel completely blessed most of the time. But other times, I grieve for my life without a special needs child, or I can certainly be at my breaking point. I am the Mom who has to be "on" at all times emotionally. Many people are watching me. My kids, my attendants in my home, therapists in my home, educators and social workers in my home, friends and neighbors in my home. By the end of the day I can be so drained from just being Super Mom. Especially in the Summer. Especially. 

Thank you. Thank you. Thank you for those of you who love my June bug on a regular basis. You are pouring in, friend. And filling up my cup. You are.

East Beach, July 27 (by Kim Olson)

Introducing...the BIKE!

It was 103 degrees today.
I knew the BIKE was coming and when I received the phone call from the happy man at Numotion, I felt like a child at Christmas.

And he came like he said he would.

Very kind. Very patient. Very Sweaty.

Delivering the BIKE with a smile, dress-up pants, square-toed oxfords and white sunglasses...which June promptly ripped off his face (I gave him permission to wear something cooler when it breaks 100).

June knew that THAT was her shiny red-raspberry bike.

And for a very brief second we had to take her off of it so we could adjust the seat, turn some screws, sign some papers. 

Of course she immediately threw her body on the ground in convulsions, thrashing with rage, spitting fire and hurling insults because she thought we were sending back her new toy. The gall of these people.

SO we took it for a test drive...
Along with the rest of the circus.

Sass (short for Sassafras) went and got her bike when we weren't looking.

Getting a slow start here...the poor 6 year old was patient

And they are off!

 

 

I must say we only made it around the block...but mostly because everyone was roasting and dripping and Sass was moving at a snail's pace in her rain boots and walking-the-bike technique.

Super pumped and proud of herself!

June would like to thank Numotion for having such a knowledgeable and friendly team of mobility specialists and she would ESPECIALLY like to thank the Bloomfield Group for their generous grant which aided us greatly in the purchase of this trike.

F-i-v-e

Dear Iva June,

Five years ago today you entered this world. 

Created by the Master Himself.

Planned and perfect.

The most beautiful baby I had ever seen.

http://haynephotographers.com/

  And your Daddy and I knew from that moment on that you had your own schedule, your own way of doing things. 

You were taking time taking IN, 

measuring widths of spaces, 

 counting circles turning, 

listening closely to every beat of every heart that held you close.

 

And we thought the day would never come when you'd venture out on your own, exploring new ground, paving your place in our family, 

straining toward independence.

15 months

And I know there have been times we haven't understood you.  

And you haven't understood us.  

But we are learning to speak each other's language. 

It's hard.

Hard to speak a language that has no translation, no natives, no norms.

No guidebook.

But I don't tell you enough that I'm proud of you. 

That even though we do things differently, that it's okay.  

And I'm sorry if I've gotten frustrated with you.  

I need to be patient.  

Like you are with me. 

 

I could spend some time listening to what you are trying to tell me.  

Even more time.  

Because you have something to say.  

And it is much wiser and more wonderful than 

All these ridiculously tainted thoughts renting space in my head.

You say.

Look at the leaves dancing up there, 

black shadows twirling proudly against the orange sky.

Every move orchestrated and predicted. 

Do you see the way the water moves on the river? 

The way it feels against the span of my hands, 

dripping slowly down the length of my arms,

creating tiny rainbows that glisten as it circles back into the water?

Put your head on the piano. 

Feel the pounding of the keys against your body

Through your heart. 

Right to your very core.

Hold me close.  

Let me wrap my legs around your back, 

My arms around your neck.  

Too hard.

So you know I love you. 

Forever.

Happy Birthday my sweet Iva June.

I would tell you to relish the years,

take time to capture each moment,

to listen.

But you are wise beyond your years, my dear.

Good Friday

This weekend we jumped through a lot of hoops to get to a wedding.  We packed the car up, headed down to Durham, NC, dumped a couple of our kids off at my brother-in-law and wife's house (thank you J and K!!) and whisked our one very precious special needs daughter off to a wedding in Wilmington.

I'll be honest.  It's hard to watch a wedding with a special needs child.  
She wiggles, crawls away, spits, eats the dirt, eats the table cloth, eats the centerpieces, cries, climbs up strangers' legs, thrashes backwards, flails wildly, stims constantly, shrieks, poops her pants often and bites randomly.  And she's getting stronger by the second (praise God?).   

And then there are those rare moments where she is completely 
precious and happy. The easy part.

This wedding though, was unlike one I've ever been to before.  Not because of the light mist, the most perfect venue, or the stunning bride in fairy-tale white, not because of the loyal Navy community present, or the gorgeous big white tent, or the delectable food,  but because of the mere fact that I had NEVER in my life seen so many wheelchairs at a wedding.

Yes, I said wheelchairs. Look:

You see, the focus was clear for this couple.
And someone might as well have been screaming it from the rooftops:

ALL PEOPLE ARE VALUED AND HAVE SOMETHING TO OFFER,
DESIGNED BY GOD, AND WELCOME HERE!!!
(AND BY THE WAY, WE MIGHT, JUST MIGHT HAVE SOMETHING TO LEARN FROM THEM).


Come by horse, by car, by plane, by spaceship, by buggy, by stroller, by crutch,
by wheelchair.
WE LOVE YOU!
Scream, holler, hoot, cry, wail, fart, drool.
STILL COME!

So we came.  Along with several other families who may have been shunned or shushed or shut out at other important ceremonies.

During the ceremony.

Doing a very good job not ripping the tablecloth off.

And that night, as I watched this bride dance with my daughter for a solid 15 minutes, my eyes welled and spilled because at that very moment, I realized she loved Iva June for who she was.  I was not bribing, begging, bartering or making apologies for her.  I was not paying her to care for her.   She was not a relative or even a long-time friend.

She was doing this because she actually wanted to.  She seemed overjoyed to be holding her, swaying with her and letting her know that she was, indeed, important amongst 300 wedding guests.

And not only did she dance with my daughter, but she took several others out of their wheelchairs and danced with them as well.

What bride has an hour to do that?

This one.

June dancing with her new "attendant"

And that is how you raise a daughter.  Thank you, to this woman's parents.  I know your own journey and heartache has made your family also very unique.  Well, I want you to know, it has come full-circle.  And this may be just a very small part of the WHY in all those years of hard moments and shed tears. Thank you.  Thank you. Thank you.

The littlest helper

We had rice tonight. Again.  Which always seems to be on the menu with this gluten free diet.  Every time I steam rice and eat with my three kids under 6, I make myself promise we will not do it again for at least 3 weeks.  The end result is hardly in the mouth, but MOSTLY on everyone's bare feet, mashed into butt cracks and stuck to hair and under chins and chairs.
And definitely MOSTLY NOT on the plates.

You have one of two options at this point.
Clean by picking up each piece individually, basically with tweezers
OR wait til dry and, in the morning, sweep up.

Truly, I have no idea how people do it with chopsticks, but at the end of dinner, this is what the table and floor looks like:

Don't EVER get a table with deep rustic grooves in it, NO matter how cool it looks.

Fortunately, I have a little helper who is always willing to clean up the mess.  I put her right to work. 

 

So this entry really isn't about rice, it's about my little helper.

My babiest girl is turning two years old in two days.   

And about 1000 days ago, she was given a very BIG assignment, an assignment only the God of the Universe could have given to the 

littlest helper.  

And OH, she has risen to the occasion.

She is JOY. 

She is Unbridled PASSION. 

She is teacher.

She inspires, encourages, plays with, and enthusiastically loves her older sister in a very BIG way.  

And with her screaming demands, come bold streaks of courage where she takes June's hand and leads her through the steps of life.

And this littlest sister pushes her BIG sister to do more, to be more.

To come out, to dig deep in her soul and smother her with kindness.

And...to just plain smother her.


To wrestle with her birth order number.
To find a brave new place where I haven't gone,
and triumphantly stay there for a while.

Happy Birthday my littlest Charlotte Rose-Marie!

Tears

I have this good friend.  She's the kind of friend who you can just drop in on, go on random walks with, tell secrets to, drink raspberry wine with...sometimes at 11:00 in the morning. We text back and forth all day long, laughing and giggling, sharing triumphs and woes.  She's the kind who saves her expensive jeans for me because she thinks I might be able to squeeze my butt in them. How flattering.  God knew I needed her right now.  Maybe she needs me. 
I don't know.

And the blows keep coming to her. Blows after blows after blows.  It never ends for her and her family.  It's not even like she can see a window, or a glimpse of goodness, of blessings.  She just gets hit down, hit down again and again.  I listen, and I feel like I say the same things over and over again, all the while begging God for mercy for them because I can't whisper one more time, "I can't even imagine. I'm praying for you.  I love you."

And so when I don't understand, when I don't see the why, when I know in my head that God only gives us what we can handle, I have a hard time transferring this notion to my heart of hearts, embracing the fact that God is allowing this trial at this moment for them.  She has made no decisions to cause it.  She is just trying to live her life raising two boys, and nurturing a husband who is thirsty for normalcy.

She is a hero because she chooses to laugh during the day at the ridiculousness of it all.  She is a hero because she believes that God will heal her son completely, wholly, fully.  She is a hero because she opens up her home in the midst of chaos, flailing wide her gaping heart, telling the truth, being brutally honest.  She is a hero because she made me prophesy and promise that her second son would be born into this world with zero complications.  I did.  I promised.

I love you friend.  Your tears are being collected, I promise.

"You keep track of all my sorrows.  You have collected all my tears in your bottle.  You have recorded each one in your book."  Ps 56:8

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."