Time Marches On

… or crawls or walks. At 8 1/2 months, we don’t really sit up yet. While Christmas is in the air, I’m becoming more aware of the gross motor skill differences between Addie and other children her age. In some ways, I consider myself lucky to have a baby who doesn’t move much, yet. I don’t have to chase her around- she stays on her play mat and happily rolls from one toy to the next, but other times I feel sad. I want to wear her on my body. I want to have her sit up and look at me. I don’t want to worry every time she bumps her head that there will be some severe injury. I don’t want to feel the kyphosis in her spine. All good things in time… Sometimes, time takes a long while to come.

It’s Christmas Eve, and as people are tucked away in their beds, I am feeling Addie’s soft spot to check for a buldge. Like I do every night. I wait until she is asleep, then gently feel her head to make sure that there are no signs of hydrocephalus. Then I let her sleep. Just as Santa is making his way down our chimney, I will wake up to make sure Addie’s snoring isn’t getting worse. When the milk has been finished and the cookies all gone, and the big man is on his way to the next house, I will lay back down to pretend to sleep ’til dawn.

I love Christmas, but maybe my love for the season is rivaled with hate for it, in equal parts. I miss my Dad. I hate that we barely put up lights to save on an electric bill we already can’t afford. I wish my whole family could be together and not spread out down the east coast. And I wish I knew what the future held for Addie. There are a million things that can go wrong in life, I just want one wish for Addie’s first Christmas: A lifetime of happiness for my baby girl.

I remember last year at this time:

We were in Florida and I could not wait for Addie to arrive. My handsome nephew, Mark, had been born almost a month prior, and I could not stop snuggling on his little self. I couldn’t even dream of a human so small and fragile. But then, my Addie came.

This face is wise and curious:

She is, as far as I can tell, the reason I am here in this world. But sometimes, I wonder if I am good enough for her. Am I willing to wait for all the good things? Will I show her the right path to take, but let her choose her way? I want so badly to live in the now, but it’s so hard when the past is always nipping at your heels.

My dear baby girl. You are the comfort and joy, the wondrous night, what makes me laugh all the way home where you snuggle into me and keep me warm, you’re my good cheer and you help me live in Heavenly peace. You are my miracle. Christmas, or not.

Happy holidays to all who celebrate. May we never know what God intended for our lives, just that He intended them for us.

Sleep With Him

Yesterday 20 elementary school children, in a small town in Connecticut, woke from their slumber to dress for school. Some chatted with their parents or siblings about Christmas coming soon. Some probably looked for their right shoe, or left. Or for the mischief their elf got into. They forgot their homework in the merriment of Friday.

They went to school, but they never came home. They never got the chance to grow up and so we remember them as the innocent babies they are.

This same morning six adults woke to care for, teach and expand the minds of children at Sandy Hook Elementary. They woke to a quick cup of coffee, maybe some cereal. They checked Facebook, or kissed their significant other. They sent a text message and wrote a note about what would be for dinner that night. They hopped in cold cars and drove to work. And they’ll never drive home.

Twenty six souls set free in a world of Hell, while in an elementary school. A mother dead. The gunman, too. 28 people. Human lives.
Is no place on earth sacred? Is there no where safe?
Twenty souls who never had the opportunity to cause trouble, gunned down without cause. Seven adults sharing their lives to grow young minds, now lost in senseless violence. One man who turned his life-calling into the nightmares of countless others.

Today, as we woke up, our heads hurt from the tears we shed, our hearts hurt- trying to beat for 20 children throughout the night.
This day and every day after may we hug our babies a minute longer, enjoy each day just a little bit more, and cherish each moment for moments are so fleeting.

For the times you are blessed with; to watch your child on their first date, drive a car, graduate, get married, start a family. Everyday is your best day, your luckiest day. Hold on to them, as it takes just one to rip you from your dream and into Hell on Earth.

Time is all we have, and it is never time enough.

God rest those 20 souls of children, and the 7 brave adults who are caring for them still. May you all sleep in peace with Him.

This might not be about gun control, or the mental health sector finally being as important as physical health, or, even bullying and the effects it has later in life. Sadly, evil has and always will exist in this world. While I do not own a gun, I know many responsible people who do. And, growing up the daughter of a psychologist, I know the way mental health is still regarded as unimportant and often not covered by health insurance. There is a belief that hotlines and ten visits per year with co-pays of $20 each are enough to “cure” someone of their imbalances. Physicians, untrained in mental health disorders, are supplying medications unfit for the minds of their patients. Patients who may use guns. Or knives, or fists. Who may one day hurt others or themselves. There are no excuses, and what is wrong will always be wrong, but maybe, just maybe, this is a call to take the true threats we face everyday as humans a bit more seriously, and stop playing the terrorist game in America. There have been too many shootings. There have been too many threats, and punches thrown. Let us reflect and bring what peace and love we can to this world of chaos. A tweet I can relate with spoke so true to this thought, including the idea that one person tried to light their shoe and now we all have to take our shoes off at airports, but there have been multiple mass murders, and yet there is not enough being done to prevent them. I do not and will not speak to gun control, as a non-owner, it is not my place. I do not care if you have a gun. I care if you are responsible. What I will support, and hope you support as well, is the mental health of my fellow Americans. Not all shooters are depressed, or crazy. A diagnosis of mania, bi-polar or schizophrenia is not what makes a killer. The more educated we are about these issues, the more outlets we have for help, the less trauma (I believe) we will see in this country.

Have a blessed weekend.
Love,
Chelley

Excitement Never Ends

Everyday I learn something new… and so does Addie. Today she is 5 months young, and showing me new things everyday.

Happy birthday, beautiful.

Looking back to before she was born, I want her to know how excited we were to be having a baby- HER! … Here I am at 35 weeks.

Parenthood is scary, but knowing that I have such an amazing daughter, makes each day beautiful!

There is a poem I’d  like to share, called Going to Holland. It was shared with me to “make me feel better”. I know it makes people feel better, and I understand what it is trying to convey, but it is not how I feel. I’ve never been sad that Addie has achondroplasia. I am scared sometimes- I don’t know what the future holds- but I am not sad, I am not disappointed, I do not feel shafted. Having an LP child, I know some times a parent’s reaction can be anger, and that is OK for them. I just don’t have anger at her. I feel angry at God or a higher power when I watch her cry and can’t hold her and make it better. When she is getting poked and prodded, wrapped up, imaged, scanned and more. I do not consider Addie disabled, and I will not treat like she is.

Going to Holland
(Emily Perl Kingsley)

I am often asked to describe the experience of raising a child with a disability –
To try and help people who have not shared that unique experience to understand it,
to imagine how it would feel.  It is like this…

 When you’re going to have a baby, it’s like planning a fabulous trip – to Italy.
You buy a bunch of guidebooks and make your wonderful plans.
The Coliseum, The Michelangelo David.  The gondolas in Venice.
You may learn some handy phrases in Italian.  It’s all very exciting.

 After months of eager anticipation, the day finally arrives.
You pack your bags, and off you go.  Several hours later, the plane lands.
The stewardess comes in and says, “Welcome to Holland!”

 “Holland ?!? ” you say.  “What do you mean Holland ?? I signed up for Italy!
I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan.
They’ve landed in Holland and there you must stay.

 The important thing is that they haven’t sent you to a horrible, disgusting, filthy place,
full of pestilence, famine and disease.  It’s just a different place.
So you must go out and buy new guide books.  And you must learn a whole new language.
And you will meet a whole new group of people you would never have met.

 It’s just a different place.  It’s slower paced than Italy, less flashy, than Italy.
But after you’ve been there awhile you catch your breath, you look around…
and you begin to notice that Holland has windmills…and Holland has tulips.

Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…
and they’re all bragging about what a wonderful time they had there.
And for the rest of your life, you will say,
“Yes, that’s where I was supposed to go.  That’s what I had planned.”

 And the pain of that will never, ever, ever, ever, go away…
because the loss of that dream is a very Significant loss.

 But if you spend the rest of your life mourning the fact that you didn’t get to Italy,
you may never be free to enjoy the very special, the very lovely things…about Holland.

…but I am in Italy. Well, no. I’m in Rhode  Island, which is not where I want to be, Italy isn’t either, but if we’re on the topic, here goes: Parenthood is Italy, as this author describes. Or, in my case, Holland. I’ve been there, and I loved it! I have never been to Italy, and while I do hope to go someday, I will always have a place in my heart for the trip I took with USA Field Hockey to Holland. I know plenty of parents with children who have no diagnosis and they are not having a good time.

It may get hard for parents of LP, but it’s damn hard to be a parent in general. Sure, my opinion my change, but being blessed that Addie chose us will never be Holland (although I’ve been and I loved it), she is Italy (where perhaps someday we will all travel to together). My dream was not to have an AH or LP child, my dream was to be with the man of my dreams and have beautiful children. Here she is, as Adelaide Eileen. There is no significant loss, there is no pain. There is beauty, little giggles, big coos, snuggles and kisses. Sometimes there are tears, but would the smiles be as big without them?

Happy 5 months April 17th babies!