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