...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album



And I'm singing Aaa-ayyy-men, I'm alive!







William Leonidas November 12th, 2009
My only regret is that I cried so many tears while I waited for you.


"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"


Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10




Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5




For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14



Monday March 5th, 2010

So Why Stinkerie?



It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."



Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!



Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!





Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water


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Tuesday, May 3, 2011

"My Happy Place" (Katee's Story)

I am the nurse, Katee, that Tracy spoke so kindly of in the post entitled, "She's A Keeper." I was flattered by Tracy's remarks and appreciative of the opportunity to discuss my previous encounters with other Down's Syndrome children and their families. It has been refreshing to be in Tracy's home, entrusted with her precious Little Stinkerie, while she is working, and see a family truly embrace the gift that Willie is. My story begins a year ago, when I was placed in a 7,000 square foot home in a ritzy gated community, in the Santa Clarita Valley. My patient was a 3 year old twin diagnosed with DS. I was excited to work with her but quickly my excitement turned into anger and resentment. The family was using me to disclude their child from family outings, because according to them a child with DS can't appreciate Disneyland or trips to the zoo, beach, etc. This family was fortunate to have money at their disposal, mom was afforded the privilege of being a stay at home mom and chose to only play mom to her two "normal" (her words, not mine) children. My heart was conflicted. I felt like this child needed me. Because unlike her family I enjoyed outings to the park or mall. I proudly introduced her to friendly passersby. Eventually, her mom got rid of me, presumably because our relationship became so intense and our views were worlds apart.

My next client was unfortunately much of the same, but with an added twist. I was instructed to keep this beautiful child in her 10 x 10 foot room. She was approved for much needed therapies that she never attended because mom wouldn't make the 10 minute drive to the clinic. I did my best to teach her fine motor skills, teach her to walk, etc but I was frequently instructed to stop and turn the TV on for her instead. I did my best to educate the parents as to her capabilities and encouraged them to set goals and assist in her journey to achieve them only to be met with resistance and then later get blamed for her delays. It is said that opportunity knocks but for me it rang...

And brought me to Willie......

Here I am now, in my happy place as Willie's nurse. I am a part of a team working to make Willie the best little person he can be. I no longer dread going to work, but embrace every new day, every sign of progression and every kind word of appreciation. More than anything I am grateful for all of my experiences, good and bad, with these amazing kids. Each and every one of my patients will always be in my heart. (And hopefully I'll be in theirs)


Posted by Katee, Nurse Extraordinaire!
Thank you, Katee, for baring your heart to us.

1 comment:

Csunshinegirl said...

Sooo heartbreaking to read this in this day and time. VERY uneducated parents. Sooo sad (wiping away a tear!) Glad you found her and she is in a healthy environment.