Love These Lyrics

Times Like These by Jack Johnson

In times like these
In times like those
What will be will be
And so it goes
And it always goes on and on...
On and on it goes

And there has always been laughing, crying, birth, and dying
Boys and girls with hearts that take and give and break
And heal and grow and recreate and raise and nurture
But then hurt from time to time like these
And times like those
And what will be will be
And so it goes

And there will always be stop and go and fast and slow
Action, reaction, sticks and stones and broken bones
Those for peace and those for war
And God bless these ones, not those ones
But these ones made times like these
And times like those
What will be will be
And so it goes
And it always goes on and on...
On and on it goes

But somehow I know it won't be the same
Somehow I know it will never be the same.

More DIY Sensory Ideas!

Images linked!

Welcome to Italy

I'm feeling a bit fragile this week, what with Charlotte's birthday coming up. It's making me act like a jerk. Not wanting to see a friend's new baby because he will be small and cute and soft like Lily was last I saw her. Not checking blogs of close friends from our special needs world because I feel left out or something similar. Feeling resentful that old therapists and nurses and docs from our past don't just call up to say "Hey" and exclaim what incredible kids were Boof and Lily. Like everyone is moving along without us. Ridiculous, I know. Here I suddenly find myself in Glamorous Italy and I'm really missing Holland. Special Needs is a family, and it's a good one. It's close and strong and there to hold one another up. Once you are in, you are never out, even after they come to pick up the oxygen concentrator. My feeling left out is all my doing. Truth is, I just don't like the grieving. The sudden kicked in the gut feeling. The quiet. The look Non-Special Needs Family people get when they find out I've buried half my children. And the fact that I tell my story so matter-of-factly, because it's just my reality. Lot's of people's worst nightmare, my every day.



I miss my snuggly girls. Charlotte was a supreme cuddler. When I woke up terrified in the night thinking I hadn't turned on her oximeter alarm, I could go in and lay with her and hold her little chubby hands and bury my face her in thick coarse hair, smell her sweaty head. Lily slept between us the last few nights of her life, which was difficult with the feeding tube and pump and oxygen, but so worth it. I could lay my hand on chest or squeeze her foot. Hear her breath.



Lately after I finish reading to Ella at night, she immediately announces "I want to sleep in mommy's bed." Zar tends to not come to bed until very, very late, or very early, depending on how you look at it, so I let her. I love having her there, listening to her suck her thumb and sigh, being woken up suddenly by a grubby foot to the nose, but she will not have the snuggles. "NO!" She squawks. "MY PILLOW! NOT YOURS!"



After she falls asleep, sometimes I can lay my finger in her tiny curled hand, fingernails pink and chipped and slightly sticky. Usually she lets it be. Then I sigh and think on the difference between my girls. Two gave their whole selves to me to care and cuddle for, and the two who, already, are running away from me at the park, climbing out of their high chairs and only accepting hugs when they have scraped knees or bonked heads. Or are asleep.

There is a sweetness and sacredness to the absolute dependency I once knew. I miss it.

A Few Feet, and a World Apart....

A note from Kristina Smith Blizzard of the facebook support group, Loving a Miracle - Special Parents Supporting Each Other.

I will feel better if I get this off my chest, even though I know the people who will read this are not the people to whom it is addressed...

You and I stand just a few feet, and a world apart.

You are the old lady in the restaurant who gave me a stern look, then elbowed her friends, so they could also stare at my daughter. You shook your heads in open disapproval. In your world, children aren't born 3 and a half months early, and they don't have life threatening strokes, therefore they have absolutely no excuse to be using a bottle at 4 years old. In my world, the fact that my daughter can take anything by mouth is both a miracle, and the result of years of painstaking effort.

You are the irritable man at the Science Center who gave my children a blatant look of disgust when they had trouble staying in their seat during your presentation. In your world, parents are expected to control their children in public, and children have no excuse to behave that way. In my world, my children have ADHD and autism, which makes sitting still very difficult for them, even when they are on medication and are really trying to behave.

You are the lady in the mall who rolled her eyes at me because my daughter was making too much noise. In your world, parents should teach their children to use their "inside voice." In my world, the fact that my daughter can make any vocalizations at all is really amazing. Her left vocal cord is paralyzed from nerve damaged caused by a chest surgery which was done when she weighed less than 2 pounds. In my world, not all children are capable of understanding the concept of an "inside voice."

You are the neighbor who notices with dismay that my yard doesn't look quite as manicured as it once did. In your world, there is time and energy to put in to things like that. In my world, I am too exhausted to care much about the yard anymore. I have bigger concerns that consume my days and nights, important things like trying to teach my 4 year old how to communicate her basic needs.

You are the fair weather friends I once had, the ones who simply evaporated while I struggled for months to cope with having a critically ill child. In your world, friends are only worth having if they are always fun to be around, and aren't likely to need anything from you. In my world, friends don't need to be asked. They can see you need help, and are quick to offer it.

You are the checkout lady in the grocery store who said to me, "I am SO glad that isn't my kid," not realizing that it was my own son you were commenting to me about. He was having a meltdown, and my husband was taking him out of the store, while I checked out as quickly as I possibly could. In your world, children with special needs are a curse. You pity them, rather than value them as people. With your eyes, you see only their deficits. In my world, special needs children are a blessing beyond measure. They teach us invaluable lessons in gratitude, patience, faith, and the value of life. With my eyes, I can see the miracles you sadly fail to see.

You are all the people who smugly pass judgment on us. I know most of you do so without knowing all the facts. I realize you measure our behaviors by the only rules that you know, the rules that govern your world. You can not know how deeply your thoughtless responses cut. On most days, I extend to you a courtesy you fail to give us. I silently pardon, and excuse your behavior. Because you do not live in my world, I know you can not begin to fathom how hard my children work to try to meet the expectations of your world, and that they are doing the best they can despite their challenges.

I both forgive, and sometimes envy you for your ignorance.

...and so ends the rant....with my apologies.

What We Want

What We Want
lyrics by Bess Rogers

Maybe all this time we've been held down
By the heavy weight of our own thoughts
Maybe all this time we've searched around
It's been so long, it’s been so long that we forgot

What we want, we have already got

You can store your innocence away
Study who you are and who you're not
But you don't know how to feel today
It's been so long, it's been so long that you forgot

What you want, you have already got

No, you won't find it if you're looking
Too busy with your endless searching
Oh, no
No, you won't find it if you're looking
Oh, no
Too busy with your endless searching

‘Cause what we want, we have already got
What we want we have already got
What we want we have already got

My Kind of Heroes!

Have you been able to take your family to Morgan's Wonderland yet? I only feel like I've been there by living vicariously through their blog.... You should follow this blog, it makes me happy to see all the sweet faces having fun like they've never been able to before!

Jette, Rocket, XRay & Morgan of Morgan's Wonderland Heroes' Club

Dear New Parent

by Claire of Life With a Severely Disabled Child. Shared with permission.

Dear new parent of a severely disabled child,

You are about to enter into a whole new world. Your life is about to be turned upside down. Nothing is ever going to be the same again.

Your are going to spend more time in hospital than you ever thought possible. You will see things there that you hope to never see again...but you will, over and over and those things will be happening to your child. Those things will be done to your child. You will learn to hate the hospital, especially the smell...

But one day, if your child makes it, you will go home with that child and that's where it really starts...or ends, depending on how you look at it.

Artist unknown. Source.

You will work harder than you have ever worked, sleep less than you have ever slept, spend money at an alarming rate. You will do things you'd never even heard of, and things you'd heard of but hoped you would never do. You will acquire an intimate knowledge of body fluids, and of pain...your kid's and your own.

And there will be choices to make: awful, terrible choices. Some will involve life and death. Most will involve the lesser of evils. And no matter which choice you make, someone will tell you that you are wrong.

Then you will lose many friends, and some family.

And you will be scared to death. And you will cry...a lot. And, in the end, there are no guarantees that you are going to make it through.

But, you are not alone. You're not the only one doing this day to day. Some of us are, indeed, making it through, and not only making it through but actually living and providing a life for our severely disabled child. You might make it too.

If you learn to see the doctors as merely human, and medicine as an art, if you do your own research as well as consider their views, you might make it.
If you learn to trust your gut and then speak up, you might make it.
If you learn to pace yourself, ask for help, seek it out where it's available, you might make it.
If you learn to let go of everything you thought life was "supposed" to be about, all the norms and expectations, if you learn to live with less and appreciate what you have more, if you develop creative ways of finding respite and joy, you might make it.

You will have to confront pain: not mix yours up with your kid's. You will have to learn to deal with your own and accept that you can only do your best to mitigate your child's. You will learn that feeling guilty is a waste of time and energy and can only paralyze you. Then you might make it.

You will have to let go of the future and deal only with the present. You will have to deal with everything one day at a time...sometimes one hour at a time. Then you might make it.

You will need to understand about "blame". God or devil, karmic debt, random fate; you will never know "why" it happened. You can seek compensation where compensation is due, with the understanding that it won't change your reality in the end. Your only defense is your attitude. You might make it if you let go of blame.

In time, the fear will ease, the tiredness become routine, the new life you are leading okay because it's your child. You will love that child deeply and immeasurably. There will come joy in unexpected ways. You will see strength and not just vulnerability. You will understand your child is some "one"...someone who is here to live life just as you are, and has the right to do so, as fully as possible. And you will learn to do that together...and you will both "make it".

Unlocking Ian's Potential

This is such a sweet story about a cute little boy....

Having trouble seeing the video? Watch here.

Wheelchair/Stroller Accessories

Here are some wheelchair accessories that I either have or am getting. Prices are reasonable and images are linked!

Inspiring Room Makeovers

by John Kaiser of Guideposts

I am a huge fan of the TV show Extreme Makeover: Home Edition. Partly because I’m a commercial interior designer.

The show, which provides remarkable free home renovations to families in need, tugs at my heart. Four years ago an episode did more than that. It gave me extreme inspiration. It featured a boy who used a wheelchair. His house, once a minefield of obstacles, was made safe and accessible, and his room was transformed into a fantasy land. “For me?” he squealed. My wife, Susan, and I got choked up. I wish this show had been around for Lauren and John, I thought.

Lauren and John, the children of two sets of our friends, were adults now. But as kids, Lauren battled kidney failure and John suffered a traumatic brain injury in a car accident. They spent months stuck in their rooms, recovering. Rooms that felt like hospital wards.

I pictured a team of people from right here in town making over rooms for children like them, helping them feel less like patients and more like, well, kids! And we could redo their siblings’ rooms so they wouldn’t feel left out.

I didn’t tell anyone about my idea. I mean, it was pretty far-fetched. Sure, I’m an interior designer, but it’s not like I have the resources of a hit TV show — or its budget! Still, that night I prayed, Lord, show me what I need to do.

A few months later Susan and I went to our church study group. “I have an idea that I’ve prayed about and I need your help,” I blurted out. What are you doing? I thought. You haven’t even told Susan yet. Before I knew it I’d told them the idea. I looked over at Susan and she smiled.
Story continues below ad

I called Lauren’s and John’s parents. They were delighted to advise us. I told everyone I knew about the idea. A few said they’d volunteer, but not enough to get things off the ground. One morning I said another prayer, Lord, thank you for clearing the way, but we’re going to need more help. Almost immediately my phone rang off the hook, as if everyone decided to help all at once: interior designers, architects, and social workers and pediatricians who would help us find the children most in need. In February 2008 we became a registered nonprofit called Welcome Home Angel, Inc. Of the 12 members of our church group, four joined the board of directors and the rest volunteered their help.



Since then we’ve redone 10 rooms for local kids. Kids like Gage, an 11-year-old with muscular dystrophy who loves motorcycles. “Holy Moly!” he shouted when he saw his Harley-Davidson-themed room.

His hospital bed had Harley logo sheets. Flames streaked across the walls. His bathroom had a wide space under the sink to fit his wheelchair, and grab bars so he could lower himself into a shower seat. On his nightstand stood a framed photo — Gage in the sidecar of a Harley taken during a ride we’d set up with a motorcycle club, the Carolina Coast Hogs. And for Gage’s younger brother, Drake, we made a football-themed room.

Gage spun his wheelchair around and grinned. “It’s awesome!” he said. I choked up again.

Even more awesome than on TV.

Love Them

"Before becoming a mother I had a hundred theories on how to bring up children. Now I have just one child, and just one theory: love them. Love them, especially when they are at their most unlovable."

-- Kate Samperi

Nothing So Divine

By & By

Thank you to all my blogging friends. You support and inspire me on this special needs journey. I am a better mother and a better person because of each of you!

Listen close, as close as I am to you
like the bell of liberty I'll ring a sound that's true
and days go by and seasons too
in time our love may digress with the words we can renew

I tell you that I
I love you by and by
I don't know if I'd survive
without a friend like you in my life

and I know words can can be the worst to prevail
how it is I feel for you it's hard for me to say
but if we keep it simple I think it's better that way
tangled words tend to lead my messages astray

I tell you that I
I love you by and by
and I don't know if I'd survive
without a friend like you in my life

this web we weave holds us hand in hand
and if we loosen our grips we may weaken these strands
so lets reinforce our love and let it echo through the land
if we don't we may find ourselves washed up with the sand

I tell you that I
I love you by and by
and I don't know if I'd survive
without a friend like you in my life

I Can Reach for the Stars

What is it like to mount my horse, To touch his warm body,
To breathe in his scent..
What is it like to move in his rhythm, to feel every rise Every fall
Of each hoof?
What is it like when we both work together, We move and we run
and we turn and we Halt...
What is it like? You might ask...Let me tell you..
My mind opens up..My body relaxes.. My heart fills with hope
I can Reach for the Stars!!

Robin Montegari

Hunter: Now I Can

Watch this video of Hunter's therapy at Now I Can, an organization that does intensive physical therapy. Hunter's mom, Chrystal, said the therapy was a definite success and soon she'll be doing a more formal review of her experience at Now I Can. In the meantime, enjoy the song and lyrics that are the backdrop to Hunter's video: Now I Can by Jarrett Burns.

You knew all you had to do was plant a seed
And inch by inch, watch it grow in me
With every step, you knew all I had to take
Was a part of this, a part of finding my own way

'Cause it was buried in me, doubt and disbelief
Tiny and afraid, wanting to believe
There is so much more to me.

'Cause now I can
See what I couldn't see
That all I need is right here inside of me
And you showed me the keys

'Cause now I can
Do almost anything,
Overcome impossibilities
You gave this to me

Now I Can
Climb all the mountains
Or chase away the shadows,
Reach for the stars
And know that tomorrow
Could be whatever I can be today

Now I Can
See what I couldn't see
That all I need is right here inside of me
And you showed me the keys

Now I Can.

Now I Can needs your help to win up to $250,000 from the “Vivint Gives Back Project” to help children with disabilities!

Please take 30 seconds EACH DAY until August 27th to do something great for a special child.

Follow this link to vote for Now I Can.

Please contact Tracey with any questions: tracey@nowican.org.

The Light Panel & Other Products

I instantly fell in love with the light panel when I saw it on Pinterest, then this post by Modern Parents Messy Kids sealed the deal. We've got one on order for Chloe!



Here are a few other products I'm considering for Chloe. Images are linked.

Tuffet Seat to help with balance & trunk control

Velcro Blocks

Textured Brushes via Love That Max

Magnetic Blocks

Squid Holder

Maracitos!

The Glowb night light

iCan Play Phone Case

Talkatoo message jewelry :)

Crazy Bones OT Toy

ASL chew ring

Magnetic Stacking Acrobats

What products are you loving lately for your child with special needs? Please share!