...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


MusicPlaylistView Profile
Create a playlist at MixPod.com

Saturday, September 19, 2009

DSALA Barbecue

This was a big day. I took The Girlie with me to the DSALA New Families Barbecue. I left The Middle at home. I didn't want to have to explain 552 times why this person looked that way or why that person spoke funny or have to field a million other questions. He's just 7 years old on September 14th, and very inquisitive. He doesn't really have any idea what Down syndrome means. Showing him what Down syndrome looks like would not be helpful for him. He would think nothing of asking someone "Why do you talk like that?" Or, "How come your baby looks funny?" He is autistic, and while he is extremely verbal and social, he very frequently lacks the the ability to determine what should not be said out loud. I am quite certain that he would stare. Anything he sees that is new and different will often be described in great detail, with adjectives most adults don't possess in their vocabulary, in a loud excited voice. And he loves an audience! I can easily imagine we might have been invited to leave NOW after one inappropriate comment drew attention and an audience formed. The boy loves to entertain and while he often displays insight and compassion beyond his years, he is just 7 and just as frequently can be as thoughtless and outspoken as only little kids can be. I didn't want to have to police him that day and I didn't want him to have a miserable time being under constant surveillance.

I took My Girlie because she has had an immense interest in the blogs I've looked at, especially of the pictures of the babies with Down syndrome. She was frequently my little sidekick those long summer months while I trolled the Internet looking for information. If there is anyone as worried about bringing Jackie Boy home, it is my sensitive Little Girlie. She turned 10 just days after we discovered our pregnancy, but she is the child who worries and frets over concerns in their minutia. I thought it would be a good environment to expose her to the facial features and the odd speech syntaxes of children who have Down syndrome. She is also on the autism spectrum but she is the quiet and introspective kind. She is the gal who hangs back from the crowd until she is comfortable joining in, and I knew for certain that when she had questions she would take me aside and whisper them. And I knew there would be questions. I'd already been telling her that The Dumpling may well have a feeding tube in his nose. He might eventually get one in his tummy. He might need to have a clear plastic tube under his nose to give him oxygen. He might be really soft and floppy. He would likely have a flat nose and the almond shaped eyes that tilt that she'd seen in so many of the pictures we'd found online of babies with Down syndrome. This would be a safe environment to expose her to all of this and more, and she did indeed get to see that some of these babies and toddlers had this equipment, and that it was okay. We'd spent the hour long trip to the valley discussing what to expect.

What I didn't expect was that she would find an instant friend within minutes of arrival, but that is exactly what happened. These two pre-teens hooked up and were together constantly until it was time for us to leave. When My Girlie admitted that she had trouble understanding her new friend, she just patiently started over and repeated things until she was understood, sometimes just saying them in a different way.

I also didn't expect that the little girls Mom would embrace me with such love and compassion. I was one of two pregnant women expected to be in attendance, but I was the first to arrive, hours before the other woman. So my new friend and I sat at a cozy table under a shady tree sipping water and getting to know each other. While I told her about my pregnancy and concerns for My Baby, she told me about her experiences with her own sweet girlie and the Down syndrome community in general. At least twice while I was speaking, her eyes welled up with tears and spilled over. It was like she was feeling my pain and fear in her heart. And she didn't try to placate me with empty promises. She told me what to expect and that it was going to be much different than anything I could imagine so far. She said that no matter what problems arose at his birth and after, there would be a support network to help us. She said I would find the strength I needed and that the DSALA would always be there with answers, support, personal visits if needed, and all the encouragement I could want. She said that Jack would be more like my other two babies than different. And she insisted that Jack would emote more love and devotion than I could fathom, even more than either of The Littles had. She was so wise. She was also honest and compassionate with me. She never minimized my concerns and she embraced me from the moment we met. When I finally said good bye to her at the end of the evening, amidst hugs and well wishes, I told her that she'd been a true blessing being the first person that I met. And she was!

Now we didn't sit under that tree the whole evening. She invited a woman she knew with a 5 month old baby girl over to join our group and after a few well placed questions designed to make me feel comfortable asking my own questions, she wandered off and allowed us to get to know each other a little and for her to let me hold her baby! This was my first ever experience with a little one with Down syndrome. And she was so very, very much like any other baby! Sweet, soft, wide eyed, and beautiful as only a baby can be! And then another newer mom joined our group and she also let me hold her almost 6 month old little girl. Again, she was just like any other baby. She was a little softer and had less muscle tone, but she was a sweet bundle of babiness and goodness, just like any other baby! Between the two of them, they shared their pregnancy stories and birth stories and answered a million questions from me. They explained what had been difficult and scary about their babies' health at birth and now, what was helpful, what wasn't, how to deal with families who were scared and friends who didn't know what to say, and just made me feel better about everything. They made me feel that just maybe it was going to be alright after all.

Then I wandered around meeting other families while My Girlie and her new friend sat together in a hammock swing sharing girl talk. The people I met were encouraging and helpful and embracing. Most allowed me to hold their babies. I don't think anyone said no, but I didn't ask everyone either. Some babies were eating, some were sleeping, but all of their parents shared information and encouragement. When dinner was served I loaded up My Girlie with plate and a soda and she quickly joined her new friend at a table to eat. I took my plate and found a space at a table and sat listening to the conversation, joining in at times, but mostly just sat watching these people who had managed to go on with their lives, mothers who continued to keep track of their active typical children while bouncing a baby with Down syndrome on the hip, men who continued to be loving husbands and attentive fathers, couples who remained a strong unit, people who were still living their lives. Their good lives. I was encouraged. Mostly I was relieved. We would be alright. Looking at these families, I thought we might just be better than alright!

No comments: