...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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Darling Jack

November 11th, 2009

My Dearest Little Love,

You are about to turn one! Already. Where has the time flown to? It's certainly gone by way too fast. I am extremely hopeful that your second year will not whiz by before I've caught my breath, but I fear it will, regardless of how much I want time to stand still. I just want to soak you in. I'm sure I felt this way when your brother and sister turned a year old, but this time it is so much more profound and extreme, this feeling of time having passed by so quickly. Too quickly.

Darling Jack, you've brought such a great many blessings to our lives. It's pretty feeble of me to try to even try to write a letter to you telling you how wonderful you are. There just are not words. How do I describe the refreshment of having thirst quenched? The coolness of a breeze on a hot face? How do I describe the feeling of joy at seeing a much missed loved one across the room? Peace finally granted from restless thoughts? Rest after labor? The reverberation of the ocean's thunder in my chest? It can't be done. Just like I cannot describe how beautiful it is that you smile just because I come into your line of vision.

Your Daddy and I have been quite changed since you came along, Jack. Your birth was a turning point of sorts for us. Even more so than when your brother and sister were born, your birth was an expansion of all that we are. You were so tiny, our smallest baby. You were so fragile and vulnerable. And yet you filled our hearts to bursting with your little bitty self, all the while calming the panic and fear that was hiding there. You were just this tiny little boy, but the very fact of your existence made us know that all would be well. You were a breath of fresh cool air into our lives, Jack. Into our family and into our love for each other.

You see, Jack. You have Down syndrome. It means that instead of the usual 46 chromosomes, you have an extra #21. It's also called trisomy 21, or T-21 for short. How much or little this is going to matter to you is yet to be seen. So far you don't care. Neither do we. You are already learning how to do things more slowly than other babies, but in the long run, you will achieve your milestones, and no one will care at what age you did them. Coupled with that and your small size, it's very much as if you will be my baby longer. You already seem to have developed a flair for the goofy. You have a blast when your Daddy plays with you. You snuggle deeply with your sister. You pay rapt attention to anything your brother does with you, especially when he holds you to show you his favorite books. And me, well, you just make me happy. Pure, joyful, no strings attached, happy.

I have to admit that I've been just a little blue as you approach your first birthday. Our older children both took off walking on their first birthdays. I knew that you wouldn't be walking by then, but I thought that you might be crawling. Or sitting. But you aren't. What you are doing is being a happy little baby who is starting to let us know very clearly when you are not happy. You are usually up for what ever activity is going on in this noisy little home, but just recently you've shown your grumpy side when a toy falls, when noises bother you, when food doesn't arrive as quickly as you'd like. You get downright cranky when Princess walks away from you! You have been expressing your likes and dislikes. I guess this surprises me because up until now, you've been content with everything.

Jack, I'd love to write something for you here that is beautiful and profound. Something that is lyrical and moving. But how do I describe a masterpiece better than the artist's brush strokes have already done? I can't. For now, just know that I love you more than I ever imagined possible. That you are truly the most amazing baby who has ever opened his eyes to peer up at me. That my heart will forever be buried within yours. I love you sweet darling precious boy. That you love me is enough.

Happy First Birthday, Darling Jack!
Love, Mommy


December 10th, 2010

Dear Baby Head,

You've be a year old for a month now! Up until about two months ago, you would greet me from your little crib with a big smile! No matter what. You could be really hungry or have a soggy diaper, but you always gave me that million dollar smile that brushed the sleep from me. After turning one, you stopped doing that! You do smile when I pick you up, once you're in my arms, but these days you start to grouse about your list of complaints as soon as I enter your vision! But again, you start smiling as soon as I pick you up. You snuggle in to me as if you've missed me forever, but as soon as your fuzzy snuggly warm little head has had enough of my shoulder, you start the morning grouse! By the end of your rant you've usually come back to smiling and wiggling and making happy sounds again, before round two. "I'm hungry I'm wet I missed you I was lonely in my cradle what took you so long I love you I'm happy to see you now give me food before I start complaining again!" Of course I have to put you down to get your bottle, and that earns me the crinkly face and the "I'm gonna cry really hard in a minute!" warning snipes. As soon as you see your gas drops coming at you you'll start going "Oooom! Oooom! Oooom!" and all limbs go straight out! Then it's gas drops in, bottle grabbed and poked into mouth, happy boy!

One of my most favorites activities is to kiss your fuzzy little head while you sit on my lap. And then you bend yourself backwards to see me and get a huge smile on your face!

I love you baby!
Momma Head


January 27th, 2011

Darling Jack,

I love you so much. It's beyond words just how much I love you. My favorites times of the day are when it's just you and me. You bounce on my lap and give me the most beatific smiles. And I love how you stare at me with the same rapt attention that you adore your hands with. Why your hands are so fascinating to you is a mystery to me, but that you look at me with the same devotion is enough. I love you so.

You've gotten to be quite the stubborn little baby. We've got an ongoing battle with power cords lately. You know you're not to touch them, and yet you cannot seem to resist. You pat the air above them while I tell you "No! That will hurt you!" But the minute you think I've looked away, you scoop it up into your hands and roll over with it. Daddy has taken to calling you Danger Baby.

Now that you're crawling you get into every thing! It's only a matter of time before you travel down the hallway to your brother and sister's rooms. The very sweetest thing is when you crawl over to me saying "Mama! Mama! Mamamama!"

I love you baby. Don't grow up too fast.
Mommy


January 31st, 2011

Darling Jack,

One of my very favorite things you do just melts my heart. While I'm changing your diaper, invariably you wrap your hands and short little arms around my forearm and hug it to your cheek, neck, chest and belly and you cling to it like it's your very dearest friend in all the world, all the while wearing a big ear-to-ear jubilant grin. It just slays me. I love you, Little Dolly Boy!

Mommy


February 7th, 2011

Dear Boy,

Today your Mommy turns 46. Wow. 46. I have heard more than once, "Are you spending the day with your grandchildren?" And more specifically for you, "Oh he's a cutee, is he your grand child?" And really, I could be your grandma. People don't know that we started our family late due to fertility issues, and they do not know that we got you through a very special surprise blessing when we'd thought we were all done having babies. It's fine though. It's one more opportunity to marvel at all things baby. One more chance to ohhh and ahhhh like only a baby inspires. One more time to delight in a little one making discoveries.  I honestly do not know if I'll live long enough to see your sister's children, or your older brother's. Neither Daddy's nor my Mom lived to see our first borns. But we have you. And we do enjoy you, delight in you, marvel at you. So happy birthday to me!
Love, Mommy


March 15th, 2011

Darling Boy,

There is simply no end to the joy I get watching you crawl! You go about it with such gusto and verve, and no small amount of pride. Your little hands smack down on the floor, splat! splat! splat! while you travel around the house with a smile on your little face! I have to admit that I cried enormous hot tears the first time you crawled. Daddy thought it was sad tears that you were growing up. That's not quite true. Daddy thinks that every thing you do marks another step you've taken away from baby hood, but I do not. You are still my little baby. My tears were of pride, of joy, of happiness, of accomplishment for you. Yes, you will grow up. And one day, you will no longer be my little baby. But that day is not today. Today I take immense joy in watching you, listening to you when you're out of sight, splat! splat! splat! around the house crawling! You are a happy, joyful little soul, and your crawling style is every bit as unique as you are!

Love, Mommy


April 30th, 2011

Dear Boy,

It's been a roller coaster month, My Littlest Love. At the end of March I discovered that we'd been denied the nurse we'd been waiting for since mid January, for the fourth time. I blew my top and did some research and sent a few well worded emails with secret jargon ordinary parents are not supposed to know to your SC at RC. On April 4th, we got Katee, and LVN with a pure heart for little babies with Down syndrome.

She came just in the nick of time too. You'd had a bad month with fevers, ear infections, a sinus infection and as it turns out, a full pound of weight loss. With Katee to look after you, I knew I was leaving you not only in skilled care, but in loving hands. Loving arms. Loving care. She'll watch over you with the skills of a nurse, and the heart of a Mommy. Miss Sonia will still be here to look after the Older Littles, but you will have Katee all to yourself, devoted only to you.

The trip to the eye doctor was fairly uneventful. You are still near sighted, but your visual disturbances are stable and not deteriorating. The trip to the audiologist was more...heart stopping. She said moderate bilateral middle ear hearing loss. And I held it together and made a plan for stepping up our learning of sign language. I even kept it together telling Daddy, and that she said you may well be able to hear more than you're able to indicate. But later in the week, telling first Beth and then Doctor Elaine, I cried my eyes out. Big, hot, full, heavy, heavy tears. I think it's the first time I've really had and reason to grieve on your behalf. Clearly, you can hear. And in about six weeks we'll have an appointment for a sedated ABR to find out just how well. In the mean time, you do not care that you have hearing loss. We'll work to make sure it stays that way.

Katee and I are doing everything we can to pack some weight on you. You've lost a full pound Little One. You're getting avocado at least twice a day. You get egg yolks mashed into the avocado. You get full fat coconut milk yogurt, and you get almond meal and flax seed oil mixed into everything that seems logical to add it to. I started you on local honey today for your allergies. Katee was going kind of easy on you, thinking you were full far sooner than you actually were. Now she's feeding like I do. Some days you have an entire avocado with two egg yolks, a 4-6 ounce jar of meat and vegi baby food, half a banana, and still drink four ounces of formula. For breakfast it's a four to six ounce jar of baby cereal and fruit, half a banana and a full carton of yogurt, followed by formula. She feeds you as long as you're willing to eat. For all of our efforts, you've gained 2/3rds of an ounce over the month, but at least you haven't lost any weight!

I love you dearly, sweet baby,
Mommy


Sunday, May 8th, 2011
Mother's Day

Darling Jack,

On Mother's Day, I wanted to say a few things to you, Darling Boy. First and most importantly, thank you for coming to our family. Some say it was chance or fate, but I believe it was God. No matter, thank you that you grew within my body, beneath my heart, in it. Thank you that those first magical flutterings were ours to share alone. Thank you for being simply the most enchanting, charming and mesmerizing baby ever. I thank my God in Heaven daily that you were born into our family. If I live to be 152 years old, I will receive no greater treasure than you.

You are proof that God is. You are His divine work, in every cell of your body. You are proof of God's master plan. Nature played with your genes, but My Father breathed life into you. I am blessed and honored to have been the vessel that delivered you to your first breath. You were one of about 700 babies born with Down syndrome that year, but God designed you with special attention as if you'd been His only one. Why He chose me to mother you is proof that there are still divine mysteries, but I consider the adoration you look at me with to be proof of modern day miracles.

I am enchanted by the way you look into my soul. It is a very heady thing to know that one so precious trusts me completely when I hold you to me. When you mold yourself into me, I know what it must be like to feel the breath of God's angels. That I get to share your days is truly a gift.

I love you dearly, dear, dear boy.
Mommy