Kindness for Callie: April is “Special Needs” Month

What if?

What if her heart had not stopped?  What if they had revived her sooner?  What if we had known beforehand?

I can’t help but think about the ‘what if’s’ often.  Of course, our life is so different now because of Callie’s death.  There is no way to come away from something like that untouched.  It affects our very being, our core beliefs, and of course, changed the trajectory of our life path.  Without Callie, Charlotte would not be a part of our lives.  I cannot even fathom that possibility.  No, as much as I wish the cruelty of it all had never happened, I would not trade this place I stand today.

Yet… there is that voice of wonder, of curiosity that whispers (it used to shout) to me.  What if?

I hear the voice when I lay down to sleep sometimes and I am talking to Callie.  In my mind, I talk to her.  Ask her about her day.  Tell her about mine.  I tell her I miss her and that I haven’t forgotten her…even on the hustle-bustle days when her memory is deeper in my mind than I like it to be.  I try to picture her in those moments, our conversations.  Sometimes she is the newborn I knew for such a short time, too short…sometimes surrounded with medical equipment, sometimes just bundled in my arms.  And then there are the other times when I try to imagine what she would look like today.  Right now.  Two years old.

With neonatal Marfan syndrome.  

I see her when I see other children with Marfan syndrome.  I picture her when I see news stories about children with disabilities or special needs.

I know how different our life is because she died, but often I think about how drastically different our lives would be if she had lived.

Countless doctor appointments.  Scary surgeries.  Physical limitations.  The cruelty of others who do not understand.  The fear that we would have been living knowing that at any minute that we may lose her.

How would we have handled it?  What would we be doing right now, today?

We’ll never know.  Callie was spared many of these difficulties and that thought gives me comfort most of the time.  But, I have to say that I feel mad for her too.  Mad that, even though she would have faced hurdles and difficulties, she was robbed the opportunity to experience the joys of this life on Earth.  And those dreams were stolen from us too.  I know I would have loved being able to take care of her, no matter how difficult it would have been.  Even a difficult life is one worth living.

Life is love.  Life is joy.  Life is hope.

I just have to hold on to the knowledge that the eternal life she is living in heaven is filled with the same love, joy, hope, and the riches of being with God, filled with peace, and surrounded by angels without all of life’s pain and hardships.  That’s what keeps me going.

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K4C-April

This month for the Kindness for Callie project we are honoring those among us who have special needs or who love someone who does.  Clearly, my heart will always be close to these types of causes and I hope that we can all work together this month to bring love, joy, and hope to someone else who may be facing great challenges in this life.

Ideas for April:

-Offer to babysit for free for the parents of a child with special needs so they can have some much needed time to themselves, whether it be to go on a date, take care of errands, or just take a nap :)

-Sign up to be a Special Olympics volunteer.

-Send in flowers, a special lunch, or Starbucks to the special education team at your local school.  They work SO hard and care SO much!  In fact, while you are at it- throw in something for the classroom teachers, specialists, assistants, and principals as well.  Education is a team sport! [without the multi-million dollar contracts ;-) ]

-Research a local animal/pet therapy organization and volunteer, donate to them, or train your animal to be a therapy pet.  In the northern VA area, here is a center for equine therapy.  I can personally attest to the power of watching highly trained dogs (so many are Goldens!! love them!) working with children and adults with special needs.  It’s a beautiful thing.

-Organize a team for a local walk that benefits a charity such as Autism Speaks.   (April is Autism Awareness month!)

-Sponsor the cost of medical equipment or a wheelchair for a person with special needs or physical limitations.

-Make a financial contribution to organizations that help those with special needs and their families.  Here are a few excellent nonprofits that I’d like to throw the spotlight on:

-GiGi’s Playhouse:  is an established series of Down Syndrome Achievement Centers, serving children and adults of all ages providing educational and therapeutic programs at no charge to families

-Autism Speaks:  has grown into the world’s leading autism science and advocacy organization, dedicated to funding research; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families

-The Morgan Project:  promotes awareness and facilitates support of parents caring for their children with special health care needs, and to enhance the quality of life for these special families

-United Cerebral Palsy:  educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities

I could go on and on, but I’d love to know if you have a charity or nonprofit organization that benefits people with special needs that is near and dear to your heart that I didn’t list above.  Leave the name (and website if possible) of your favorite one in the comments below!

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Thanks so much to those of you who supported the March K4C “Seniors” theme last month.  I heard from LOTS of people who shoveled driveways for elderly neighbors with all of the snow we had this winter.  Another friend told me about buying bus tickets for a senior citizen who relies on public transportation.  My sweet friend, Mabby, took a different spin on the theme by giving a neighbor’s ‘senior’ dog some fancy dog treats.  LOVE IT!  Thanks so much for the incredible support.  Can’t wait to hear all of your K4C’s for April :)

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Callie’s garden update:  This year we will not be doing one big garden spring cleaning.  Instead, we are meeting once a month along with some church members to garden a little bit at a time.  We’ll be gardening on Saturday, April 12th and already have 3-4 volunteers signed up.  We could maybe use 1-2 more if you are interested!  The next gardening date is Saturday, May 17th.

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By the way, I’m sorry that I’m posting this a few days late!  I’ve been working hard on my photography skills lately and it’s kept me pretty busy lately:)

Check out my photography sites:

http://kristincornelyphotography.wordpress.com/

https://www.facebook.com/kristincornelyphotography

Now if you’ll excuse me, I have a rainbow birthday party to plan for!  ;-)

Charlotte’s Time Capsule: 11 Months

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I feel like I just wrote Charlotte’s last time capsule.  The harder I try to hold on to these last moments of her first year, the faster they seem to fly right past me.  How can she be 11 months already???

Memories for Charlotte’s Time Capsule this month:

-Charlotte started clapping this month!  It is so sweet watch her give herself a round of applause after she practices standing all by herself.  She’ll also give a high five (kind of).  :-)

-Turbo Speed:  that moment when she sees something she wants across the room and starts crawling in high gear.  She’s crazy fast.  I love it.

-The couch has become Charlotte’s favorite place to play because she can cruise alongside of it to get from place to place.

-She is soooooooo close to walking!  I love holding her hands and watching her take steps…she leads me all over the place.  I can’t imagine how different it will be when she’s taking those first steps without holding on anymore.

-Um, look at all those teeth!!!!!!!  She’s using them to eat a variety of finger foods now (without the funny faces!).  And occasionally, I have received a little love bite or two.  Gotta work on that.

-This one’s my favorite…Charlotte has loved giving kisses for awhile now, but this month she’s learned how to give raspberries on my cheek.  It’s such a sweet, slobbery treat and I could just eat her up!

Sooo, I’m having a hard time as we approach the one-year mark.  On one hand, I’m excited for the next phase, toddlerdom.  But on the other, I’m so so so sooooo emotional about Charlotte leaving her baby days behind her.  I’m not ready.  Not one bit.  Someone hold me!  Wahhhhhhhhhhhhhhh

***K4C update***

Don’t forget that this month is Senior month for Kindness for Callie!  I can’t wait to hear about all of your acts of kindness!  Please click on the tab at the top of the page for more info about the K4C project :)  Thank you always for your support!

Kindness for Callie: March is “Seniors” Month

How is it already March 4th???  February really flew by!  Thanks to all of you who thought of some great ways to incorporate the ‘hearts’ theme into an act of kindness for last month!  I added your acts of kindness to the 2014 K4C log :)  Please don’t be shy…if I forgot one, TELL ME!  Don’t take it personally.  My memory is soooo terrible.   I ask at least 100 times a day, “Where’s my phone???”  It’s a chronic problem.  ;-)

Here is our March theme:

March-K4C

 

This month is all about helping senior citizens!  Or in other words, those who are “gifted in years”!  ;-)  When I was in college, I spent one summer helping to organize an ‘intergenerational program’ between the adult and child daycare centers.  It was so wonderful seeing the therapeutic effect of our senior friends being amongst preschoolers.  We gardened, did arts and crafts, read together…you name it!  It left a lasting impression on me.  Although I work with young children now, I could definitely see myself working with seniors as well.  It made my heart swell!

Here are some ideas for “senior” month:

-Volunteer at a senior center or assisted living facility:  You have many talents!  Give the gift of your time to help a senior with a skill that you have a knack for.  Play an instrument, knit, read the newspaper, teach a computer skills class…reach out to your local senior center and ask if they are interested in having you volunteer your talents.  :)

-Alzheimer’s has impacted our family closely as well as many others.  Help this month by making a donation to the Alzheimer’s Association.

-If you know a senior who has trouble getting to the grocery store or making dinner, help him or her by making a meal and dropping by for company!

-Write letters to a senior.  This is a great one for a child to help with!  When I was a kid, our church organized “Pew Pals” which paired a younger and older congregation member together.  We wrote cards for each other and gave each other small gifts.  It was rewarding for both young and old!  I can still remember my pew partner always calling me her little “marshmallow” because of a hot chocolate mug I gave her.  It was really special and is an easy way to show someone you care!

 

Thanks as always for your continued support!

Charlotte’s Time Capsule: 10 Months

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Don’t you just want to squeeze those little legs???  I feel the one year mark fast approaching and I don’t like it.  Not one bit.  This past month was full of development and milestones for Charlotte…

Things for the time capsule:

-Watch out world!  Baby Charlotte can now pull herself up to a standing position!

-Charlotte has now moved on from army crawling to crawling on her hands and knees.  John installed baby gates to keep our little explorer safe!

-Changing her diaper is now somewhat akin to trying to dunk a cat into a tub full of water.  Now that she is mobile, she wants NOTHING to do with having her diaper changed.  Once, she pushed herself away from me so hard that she catapulted backwards and was left dangling in my hands by her feet.  Yes, covered in poop.

-Charlotte is very slowly beginning to add more finger foods to her diet.  She eyes them warily and takes teeny tiny nibbles.  Progress.

-Um, how can I say this??  She is a little more….  willful.  Yeah, let’s go with willful.  That’s a positive way of saying that Charlotte has developed a bit of a ‘tude on occasion.  Ok, lots of occasions.    ;-)  But she is still oh, so sweet.

-I love the way she plays a standing up/splashing down game with Daddy in the tub.  1…2…3…splash!!  **lots of giggles**

-Playing peek-a-boo is another favorite game.  I can’t get enough of watching the look on her face when she sees me again.

-Every once in awhile, I check to see if she still has a little fat roll where her wrist meets her forearm.  Yep, still there.  I love it so much.  That and her little pudgy feet.  :)

I have a feeling that we may have a walker on our hands by next month!  Only time will tell!

Don’t forget your “hearts” themed Kindness for Callie this month!  Still a few days left :)

Kindness for Callie: February is “Hearts” Month

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Thanks to all of you who did a “yellow” act of kindness (or any act of kindness!!) last month for January!  This month’s theme is “Hearts” for Valentine’s Day.  I listed a few ideas in the graphic above to get you started, but please feel free to be creative.  I had no idea that ‘yellow’ could be interpreted so many different ways, so I’m excited to see what you come up with this month!

Also, heads up that I updated the K4C page and created a new section for 2014 Acts of Kindness…I was running out of room!  :-)

The Last Day of January

There was a time, about two weeks before Callie’s birthday, when I considered driving straight to my therapist’s office and camping out in the waiting room until she could work me in.  I haven’t been back since my last visit, and I know if I needed to it would be ok.  When I stopped to think about what was behind that feeling, I realized that what I was really craving was the time to grieve.  At therapy, I always had time to grieve.

It’s not that I couldn’t grieve at home.  I could, and I did.  But life, as it should, has marched forward.  Most of the time, this is fine.  More than fine…it’s wonderful!  But with Callie’s birthday looming on the horizon, I found myself needing the time to remember, to cry, and to feel.  I was so busy with life that I couldn’t find much time to deal with it.  And so, the flashbacks snuck in.  Not quite as vivid as before, but still sharp and scary.

Thank goodness for a snowy January.

I was given lots of little gifts of time this month.  So, I took advantage of them.  If I felt like looking through Callie’s scrapbook while Charlotte napped, I let myself.  If I wanted to smell the hat that she wore, I did.  If I wanted to reread our own story on the pages of this blog, I gave myself permission.

Most importantly, on her special days, John and I took time off to spend them together.  We reread every single sympathy card.  We napped on the couch and watched the clouds go by.  I let out a few big ugly cries.

We coped.  We got by.  We did it.

John and I were so touched by all the messages, cards, gifts, and phone calls that we received to tell us that you were thinking about us.  We especially loved seeing all the yellow that you wore.  It made us smile to think of how many people were wearing our sunshiny color in the middle of such a blustery winter.

And wouldn’t you know it?  It was a beautiful, sunny day, ending with an amazing sunset on Callie’s birthday when we tied balloons to the cross.  And when we let them go, the sun peeped out and shot sunbeams all around us.  She was with us then, just as she always is.

The sun peeping out on the way home from releasing our balloons

The sun peeping out on the way home from releasing our balloons

It’s the last day of January.  Thank you for doing so many acts of kindness!  Many of you used the K4C theme of “Yellow”:

Basket of Sunshine for Sorority Recruitment

Basket of Sunshine for Sorority Recruitment

"Table of Sunshine":  Yellow Donations for the Food Bank

“Table of Sunshine”: Yellow Donations for the Food Bank

Yellow foods for the food bank, a yellow basket of sunshine for sorority sisters during recruitment, a yellow car freshener and free car wash to the next car in line.  LOVE, LOVE, LOVE!  And so many others wrote to me to tell me about sponsoring meals for those in need, paying for the next meal in line, picking up the tab for a friend, and the list goes on and on.  Thank you so much from the bottom of my heart!  Knowing that so much kindness can come out of something so sad, really has a way of changing the way you look at things.

Thanks for the smiles.  We needed every one of them.

Stay tuned for February’s K4C theme:  Hearts!

xoxo

Callie’s 2nd Birthday

Have you ever stopped and listened to the lyrics of You Are My Sunshine?

You are my sunshine, my only sunshine,
You make me happy when skies are gray,
You’ll never know dear, how much I love you,
Please don’t take my sunshine away…

To my ears, it ends with a desperate plea:  Please don’t take my sunshine away.

Why did she have to go?

The second verse:

The other night dear, as I lay sleeping,
I dreamed I held you in my arms,
But when I awoke, dear, I was mistaken,
So I hung my head and cried…

My very last thought every night for the past two years is of holding you in my arms, Callie.  As I settle into dreams, I often pretend I can see you.

Can you see me?  

2:37 a.m. this morning marked two years since your birth on January 27, 2012.  This is our song.  It is a happy song, but one with a sad ending.  I wish I could change the lyrics, but then it wouldn’t be our song anymore, would it?

Happy birthday in heaven sweet girl.  You are loved.  You are missed.  You mattered.  You were here.

Now, you are there.

…But remain forever in our hearts.