...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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Wednesday, July 8, 2009

The Call, Part II

Okay, so I allowed myself a few minutes of crying and actually let myself feel the despair that had been looming. I had confirmation of what I had known all along...right from the moment that pee stick clock gave way to the word PREGNANT. I don't know how I knew, I just did. And it had been said out loud now, so it was time to go to my knees and pray to the loving God that decided that this baby was worth while and would breath life. Dear God, please let him live to breath life. I don't remember all that I said. I remember asking for peace. And strength. I remember saying that I was sorry for having been so cowardly. I remember telling God that since He gave us this child, I would do what ever was required to bring him forth. I swore to God that I loved him already, but please, please let me know how to mother him. I knew that he was meant for us, but would I be adequate for him? Then a peace of sorts settled upon me. We already had two special needs children. What better family to add another? Why not us? And that started my quest to find out how best to care for the baby we would soon come to call Jack-Jack while we waited for a real name.

But first, a new dilemma. The Dear Daddy was working out of town. Would it be wrong to not tell him until he was back tomorrow night? Would I be able to keep this news out of my voice? Would he hear it over the phone? Would one of the kids let it slip before I could tell him? Okay...I herded The Dear Daughter back into my bedroom. Did she tell her little brother? "Mom. I really don't think he's going to understand this. I don't think we should tell him yet." Oh the wisdom of a ten year old. So, she hadn't told. I instructed her not to. Then we went to The Youngest, Soon-To-Be-Middle's room and in a unified front told him that Mommy wanted to tell The Dear Daddy about the baby being a boy, SO DON'T TELL! He agreed. In the meantime, could I really keep this information from The Beloved? Even for a day. What to do...

I rallied The Girls. The Girls being The Other Mommy, Bits and The Big Sis. The Big Sis is not really my sister. I had only brothers. She was dating my youngest older brother when I was five. She's almost ten years older than I am. When their relationship eventually dissolved, we kept her and after 40 years together, she is My Big Sister. Which is rather funny because I she stands 5' 1 1/4" at her tallest and until my recent weight loss, she weighed about as much as my right thigh! She was a teenager when she came into my life and we often say that we grew up together. I can't remember a time when she didn't call my mother Mom, and she's been there through all the events in life. The good ones, the bad ones, the new romances, the boyfriends who turned out to be turds, the great new jobs, graduations from college, the death of my Mother, the birth of My Girlie, and a year later, the death of my youngest older brother, the elation of finally getting pregnant with my now Middle son, the devastation of losing what was to be her namesake, Hannah Marie, the utter pain and terror of The Youngest being diagnosed as autistic, the acceptance of The Oldest following that same diagnosis, and the shock of me being pregnant again, this time without medical intervention, at the ripe old age of 44. We'd been there for each other for all of the sister stuff. Sometimes I think more than with her own biological sister.

First I called Bits. She knows about these things. And her row to hoe has been a rather rocky one. She's younger than I by a few years. Her youngest is only a few years younger than my Oldest. She cried with me when I told her the news, genuine heart felt tears for the baby we weren't having, but full of encouragement for the baby we were having. She'd known it was a boy, she said, but I'd kept talking about a girl and she wasn't going to be the one to burst my bubble. Now all I wanted was a healthy boy.

Next I IM'd The Incredible Miss S, my long time friend. She was a grown woman with a husband and children while I was still really a little girl, but she's always been a kindred friend. She also expressed her sorrow for the baby we weren't having, but was again, amazingly supportive and encouraging for the baby she hoped we would eventually come to our senses and name Liam Christian Addison.

Then I called The Other Mommy. I let my tears really flow with her. She's become so much more than my children's care giver. She is my friend, sister, mother, and sometimes cohort and partner-in-crime when a plot was afoot. She was saddened but also very loving and supportive. She is after all, The Other Mommy, and so being, she is all wise and wonderful and all things good.

Next I called The Big Sis. She was the most shocked of all. I don't think I'd let on to her or anyone else just how fearful I was of this very thing. Her first concern has always been for my health and well being. For The Beloved, For The Littles, for Myself, for herself. My health and well being, first and foremost. In a pregnancy complicated at every turn, she was always the voice of reason and would often say, "I don't know Trace. I don't know how you're doing it. I'm really worried about you getting through this without your health being compromised or you maybe even, God forbid, dying." So when I told her the baby would have Down syndrome she was floored. My very lady like Big Sis's actual first words were, "F%$& me!"

I think I actually heard her plop down into a chair. She'd never actually even come close to suggesting that I abort, but with this new development, the picture for her certainly became more muddied and uncertain. I couldn't blame her either. I shouldn't be pregnant again at my age. With my health. With The Littles needing so much and still being so young. With The Beloved already working so much. "What if you die, Trace?" My Big Sis can say out loud the things that scare me the most. She's my Sis. It's her job. We cried together and explored the "What ifs" together until she had to get back to work.

In all of my calling to rally support, the PHC had called the house phone and left a message. They said to come in first thing tomorrow morning. I called them back and said that I'd already spoken to Dr S, and knew the baby's gender and that he would have Down syndrome. Oh. No need to come in then.

Much later in the day I was standing in the bathroom and felt the baby kick really hard! I hugged my belly - my son - and told him, "Don't worry Baby. You're alright. You aren't going anywhere." And now that I have the news - no not that news - that news! It's a boy! I can start on the nursery. It will be a great way to keep my mind in the right place. As a good friend would soon tell me, "He's a baby. He is not a diagnosis. He's just a baby."

In the evening My Big Sis called and she was excited to tell me about her day at work. Her very next client that day was a woman who had raised a daughter with Down syndrome. My Big Sis told her about the news I'd shared that day and expressed frustration that she hadn't known what to say to me or how to say it. The woman was very kindly and was perfectly willing to explain how her life had been since bringing home a baby with Down syndrome, back in the day when these babies were hidden away in facilities and institutions. She told My Big Sis all about her daughter, her infancy, her childhood, her young adulthood, her successes, her heartbreaks, what she did for work, where she lived in a group home. And that not only was she a happy woman, but that her daughter had also grown into a happy woman. Just like any one else. My Big Sis somehow felt that she needed to apologise to me. She said she thought she hadn't been supportive. She said on one hand she just naturally assumed that I would abort, but on the other hand, she wondered how she ever could have thought that, knowing me as she does. I love My Big Sis more than I can say. Her promise to be supportive, to do anything she could for us, was a balm to my soul.

I've opened the rough draft of my pregnancy announcement a million times today. I want to incorporate the baby having Ds. I want to tell every one at once, in one fell swoop rather than say "Surprise I'm pregnant, but oh, (doom and gloom) the baby has Down syndrome." I didn't want it to come off that way. I wanted people to know it all at one time so I wouldn't have to explain to a million different stunned silences. But I have no ideas right now. I'll try again tomorrow.

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