Archives for posts with tag: special needs
My daughter at kindergarten

My daughter at kindergarten

Today, I’m going to brag.  That’s right.  I’m going to tell you all the ways that my kid is smarter than your kid.

Gasp.  “Oh, no, you aren’t.”

Oh, yes, I am.

As we were brushing our teeth this morning, my daughter said “Mommy, the kids in room 18 need extra help because they aren’t as smart as us.”

And then, I spent the morning thinking about what the word “smart” means.  I even looked it up in the dictionary, which told me that smart is “having or showing quick intelligence or ready mental capability”.

And thinking about that definition left me wanting to shout about how smart my kid is.

By the age of two..

My kid understood two languages.

My kid spoke one language more fluently than I did, and was quickly learning the second.

My kid had an uncanny ability to recognize the face of someone we had only met once before (while I, embarrassingly, faltered).

My kid understood, and practiced, empathy at a level that I have rarely seen in other children or adults.

My kid had an ability to make animals at ease in a way that I, as a college-educated animal biologist, had never seen.

My kid understood the danger of fire, and tried to blow out every flame and hot object in every room we entered.

My kid knew how to share, and saw its joy.

My kid readily engaged with a new teachers for over a half-hour without my intervention.

My kid could use actual words to ask for almost everything needed throughout the day, from shoes in the morning to a book before bedtime.

My kid easily adapted to the ways of life in three different countries.

My kid knew how to operate a tricycle, go on a bike ride, build a sandcastle, jump on a trampoline, and safely ride in a kayak.

My kid had the ability to make even the grumpiest of plane passengers, shoppers, workers, and everyone else we met smile their biggest smile.

And perhaps most importantly, My kid easily functioned in, and welcomed, a world full of people who were nothing like him.

The kid that I’m writing about wouldn’t have been the one in the photo above.  He wouldn’t have been in the advanced class with his sister, or the one who rode a bike or tackled the monkey bars earlier than all the others.

My kid may have been the kid in room 18, and my kid would have been smart.

Returning back to the morning of brushing teeth.  We sacrificed being on time for school to have a conversation about what “smart” really means.  We explained that being “smart” had little to do with just learning to read, or do multiplication, sooner than others.  My fingers were crossed, in hopes that my daughter can unlearn what she learned in kindergarten. In hopes that I can make my daughter a little smarter, without her brother here to teach her this lesson with such ease.

My proud kid

My proud (and smart) kid

It has been eight months since our lives were shattered by the loss of Rowan.

Rowan, in the waiting room, just before he is killed

Rowan, in the waiting room, just before he is killed

 

Eight months later..

  • We are preparing to remember Rowan on his third birthday, as we celebrate his sister’s first day of Kindergarten.
  • We continue to be in awe of the amazing support from both children and adults, who have gone above and beyond the limits of true friendship. Recently, one of Rowan’s 5 year old friends learned about time travel and said to his mom “I want to go back and get Rowan to give him back to his big sister.”  Compassion and empathy seem to come so easy when you are five.
  • We continue to receive random and generous acts of kindness from strangers. Just yesterday, a man named Steve offered a wonderful gift of time and talent to remember Rowan, having never known him. Thank you, Steve. And the list goes on, giving us hope as we go out into the world each day.
  • We have heard about the Random Acts of Kindness that people have performed in Rowan’s memory, and we have enjoyed hearing the stories. Sometimes heartfelt, sometimes funny, always appreciated.
  • We have heard from the Williams Syndrome community that an active discussion regarding anesthesia took place at this year’s convention and that the Williams Syndrome Association website continues to be corrected. Though we continue to be disheartened that we were met with silence and resistance by the Williams Syndrome Association, we are hopeful that necessary changes are being made.
  • We have met strangers, now friends, who understand that eight months is just a moment in the lifetime during which we will carry our sadness.
  • We spend each day thankful for memories that pop up at the most unexpected times, and thankful for the people who say “Remember when..” We have over two years of the most wonderful memories, that we will cherish always and hold onto at every opportunity.
  • We find, each day, small moments that make us think of Rowan and make us smile.
  • And we frolic and play with our daughter, in appreciation of each moment that we have together.

But.

  • We spend each night waking from visions that we cannot erase. The color of our son’s eyes, as they were without his soul shining out from them. The look on our daughter’s face, when the spark of innocence left her, driving home in the car as the reality of what she just saw began to sink in. The sight of our son’s blood, as it washed off my skin and down into the shower drain. The details, too horrific to put into words, of our witness to each stage of our son’s death. For Rowan’s death was not the peaceful one that some hope to imagine.
  • We try to comfort our daughter as she tries to save her brother in her sleep, and fears for our loss each day. We try to remain compassionate as she lets out her own anger and grief, and supportive as she tries to remember.
  • We remain disheartened at our inability to have Rowan’s death be taken seriously. After five months of silence, we received a letter from Rady Children’s Hospital on August 11, though the hospital still has not addressed our concerns. The documents we have repeatedly requested remain hidden. Though we would welcome the opportunity for a documented conversation with a knowledgeable source, their continued offer of a “personal” conversation with their health affairs officer, the very person who previously claimed he could not answer our questions because he had “no personal knowledge of Rowan’s case”, is something we find both disturbing and offensive. Eight months later, after we have already performed our own investigation with the generous help and candid opinions of numerous doctors, we have no need for a personal conversation with someone who admittedly does not have thorough knowledge of Rowan’s care.
  • We have received no response from the  Medical Examiner, or the Police Department, or any organization outside of the hospital that killed Rowan in regards to an unbiased investigation into his death.  Though we live with the reality that Rowan’s death may ultimately be ignored, knowing we did the best we could is important to us.  Our responsibility as parents does not stop  just because we can no longer hold our son in our arms.
  • We remain saddened and angry that the doctors who contributed to Rowan’s untimely death remain untouched, and responsible for the care of other vulnerable children..
  • We see no protests in the street; no groups taking action.  Instead we spend each day trying to find the answer to the question.. “How are you today?”  Making us wonder each time, “Did our son’s life matter?”
  • We manage to get out of bed each day, as we each deal with our own guilt, search for our own path, and try to find our way without Rowan
  • And we cry, everyday.

 

Read our story: http://www.rowansmile.me

How to remember Rowan with kindness:  https://rowansmile.me/act-of-kindness-for-rowan/

How to take action:  https://rowansmile.me/how-to-take-action/

 

This is the bill that arrived in today’s mail.

You’ll see the note at the bottom says: “failure to comply with this request may result in your account being placed with our collection agency immediately”.

Each time I receive these letters in the mail,  I feel like I am being delivered the smoking gun that murdered my child, and asked, “Oh, and can you pay for this?”

The bill for the anesthesia that killed Rowan.  Five months later, instead of admitting that Rowan was killed, the hospital chooses to keep adding insult to our tragic loss..

The bill for the anesthesia that killed Rowan. Five months later, instead of admitting that Rowan was killed, the hospital chooses to keep adding insult to our tragic loss..

Our greatest wish was to be a part of a community where we felt safe.  Our intention is to help fill the gap in the community where Rowan was left behind.

We are thankful that the Williams Syndrome Association website was updated today (May 21, 2014).  Though too late to avoid our family’s loss, we hope that another family will benefit from this information.

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