Venting etc...

Some days I feel like a black spot of ink on a white wedding dress. I just can't feel like I'm blending in anymore. Although, ironically, I've always tried to stand out. We all like to be noticed in a good way, right? It's just when it seems you're noticed and you can't exactly read what is being thought. (Not that we ever really can, right?)

I step into restaurants, clothing stores, Starbucks, grocery store, you name it, and I always wonder what the experience will be like before I enter the doors. Now, I'm not consumed with it, it's not earth shattering stuff here, just minor irritations usually. What I'm getting at, is how people react to seeing my child or rather, my baby with Down's syndrome. I try to be understanding to the world, but some days I just want to glare back at them and say "what are you looking at?! My baby is cute, isn't he?"

The glares that get me are the ones that come from people who look and don't smile, and never make eye contact with me. It breaks my heart that they are so bold. Some even squint to get a better glance and break their necks. Ugh.

The glares that make me happy are the ones that are accompanied by a smile and usually a comment like "You're baby is beautiful." They also tend to goo-goo and ga ga at Charlie for a couple of minutes. Those moments warm my heart.

I also adore the people who I never actually see who make eye contact with Charlie and have a brief "conversation" with him while I'm not looking. I tend to notice after I see Charlie smiling and making noise.You know the more I think about it. The happy experiences with the public while I'm out may be fewer in number, but outweigh those funky experiences. I always remember those kind comments.

And why is it that the ones around us the most tend to make the most questionable comments too? They don't mean to I'm pretty sure, but geez... like "he looks nothing like you! haha" or "Honestly, I feel sorry for him"... etc etc... I have cried over comments from friends and family, although I know or rather hope they love me and my kiddoes regardless of what we're going through.

So it's been a while since I last posted and I'd like to catch up. Charlie was 4 months old at the time and hadn't entered the hospital for his heart surgery. December 7, 2010 was the day he had his VSD and ASD's (ventrical and atrial holes) repaired and he has healed with flying colors! Charlie was incredibly strong in the hospital and always impressed not only the doctors and hospital staff but his family and friends as well!

I'm so very proud of him for being so strong. I think he gets that from his Oma! :) Together Max and Charlie have been absolutely terrific. Max is actually starting to show love for Charlie. I was worried because Max and I have been and are so very close. He is my little man, my sweetheart. But now with Charlie in my life, I have divided my heart in 2 - one half for Max and the other for Charlie. Charlie is my soulful angel.

So, Max just turned 3 and had a wonderful little party on a train - The Grapevine Train. The ride went through the Stockyards in Fort Worth. It was perfect! I can't imagine a better gift for him at this time. He even got to ride in the engine train with his dad! He was beaming. I was ecstatic. However, it was steaming HOT. It's near impossible to do anything on either of my sons' birthdays due to our Texas summer heat --one born in June and the other July. Oh well, we have to adapt.

Charlie's 1st birthday is coming up and we'll be doing a nice little Par-tay for him as well. Not sure what to do, any suggestions? We did a Hawaiian party for Max when he turned 1. Thinking about a cowboy theme or maybe a 1950's theme, just tossing those around. Definitely taking suggestions!

Now regarding Charlie's developmental progress: (always something to track and celebrate!) He's 11 months old and has been sitting up without toppling over since around 6 months old. He has great eye sight (20/20!), hearing is good, and he babbles like crazy (funny stuff too, like loud raspberries in public). Charlie LOVES people and makes eye contact with them all the time, he's a little social butterfly and little flirt. He also plays with his toys (a big variety) on a regular basis--he loves banging two things together, he also loves to hear musical toys and anything noisy. He's not yet crawling and is still toothless like Pam the clam but that's ok! I am working with him diligently on the crawling and other physical therapy. He'll get there! He's as strong as an ox, I tell you! And don't you worry, he loves to eat and is exploring all kinds of new tastes and textures. He munches with his gums just like a baby with teeth, I kid you not! So having no teeth is not slowing him down in the eating category!

Anyway, that's all I've got at the moment... I'm going to come back here a lot more often. I can't wait to share my kids' successes and all the excitement of our experiences, not to mention thoughts on things we go through(sometimes funny, sometimes emotional)... so far this summer is about swimming, science museum, the little gym, parties, parks, playdates, the zoo, and the list goes on and on!

Money is tight too, so mommy is exploring ways to make money. Still interested in completing a children's book that I wrote... love photography and will try to pursue that...and last but definitely not least: my foot puppet project! It's moving along.. we have a few renditions of them and I've actually sold a couple. The next thing I'm going to do on that project is pull together a group of moms for a small focus group. I then want to create a flyer/brochure to highlight the ones we have and hopefully start taking orders. They are so cute! I've posted a couple of pics!

Thanks for following our story... much love.

Foot puppets for Kinderfrogs!

Good evening!

I just had an epiphany tonight. I want my son Charlie to attend Kinderfrogs. What is Kinderfrogs, you ask? Well, that's a great question. Kinderfrogs (Kinder meaning Children in German; Frogs - a little amphibian animal which is the mascot of TCU - Texas Christian University) is a school in our very own Fort Worth, just minutes away from my home, located at the TCU campus. It is DEDICATED to teaching children with Down's syndrome. Incredibly, this school is within a 5 minute drive! I absolutely want my little guy to go there one day. Actually, they start kiddoes at 18 months old through age 5. The program is a 5 day a week, Monday through Friday, full day program that helps our little ones learn everything from feeding themselves to potty training...from writing to reading...from running and jumping, to talking! I hope to start Charlie in the program at age 2. I enjoy working with him in our home until then. I teach him new things daily, from sign language to exercises that help him reach his milestones like rolling over, sitting up, feeding with a spoon, social interaction, reaching for toys, shaking, clapping, and countless other things that need extra attention when a child has a disability, like Down's syndrome.

So, here's my dilemma...the school is VERY expensive. I know that we have a little over a year to figure out how to find the funds. We could hope that it falls from the sky or that my husband creates a million dollar app idea; or that we win the lottery...or that suddenly everyone buys Legare furniture (legarefurniture.com) and the money starts to roll in.....OR I, mommy extraordinaire, ;) come up with a hot baby product that EVERYONE will want and NEED!

Ok, well, the last thought may not be so far fetched. Hear me out. Those who know me have probably heard many of my ideas/inventions... I'm always creating new things in my head. Most of the time they stay there (in my head). Other times, I share the ideas and don't do much else with them. And a very few times, I actually follow through, like writing my blogs, writing a children's book (hopefully to be published!), learning photography...ok, all that to say...I came up with a cute children's toy that my dear friend Margaret crafted for me, foot puppets!(patent pending)

The adorable, one of a kind, foot puppets are shown in my photos. We can make just about any characters you would like--except for those requiring a license, like Disney characters. But generic ideas like, frogs, dogs, cats, clowns, lions, Santa Clause...the list goes on and on! My goal is to sell enough foot puppets to pay for Charlie's tuition to Kinderfrogs! Sound like a crazy idea? Maybe, but I hope not! My husband is the nay-sayer on whether we can afford this school and doesn't quite believe I can contribute monetarily without a "full-time" job. I know we can't afford it right now (it's $14,000 a year!) but I can at least try to move the needle and get the funds rolling in. I don't care if I have to work three jobs, I want Charlie to have a good start in life. Kinderfrogs may be like college is for my older son, or it may be a stepping stone that will help Charlie attend college one day too!

I would like get orders from all over the country if I can! I might be crazy, but I'd be crazy for not trying on his behalf. Please pass on my blog, or post it to your Facebook page if you want to help and own an original "made in Fort Worth" toy that will delight any and all babies! Charlie LOVES his pair -- the crazy red-headed clown and the silly bald headed clown. :)) My son's future will be so much brighter with your help!

Foot puppets for Kinderfrogs!

Beginning again

Hello. I am writing this blog about my lovely children, Max and Charlie. I feel compelled to share our story and highlight the life and times of my two boys.

Our Story

Max was born in 2008 --he's a 2 and 1/2 year old, beautiful, sweet blond boy with a big heart. He and his doe eyes melt my heart every single day. He's my little man, my heart. I couldn't be prouder. The things he says; the stories he tells, the little comments he makes, the things he remembers is astounding. I'm convinced he's almost 5 in his development. He memorizes books and he knows so many nursery rhymes already...he sings his ABC's and is VERY polite --always says "please and thank you."

Charlie was born in 2010--6 months old. He too is my heart--each boy has one half. He is a beautiful, lively, energetic, baby boy with the most amazing smile in the whole wide world. He also melts my heart every day when I see his sweet little eyes and open mouth smile. He's very observant--he will look you in the eyes and hold a peaceful gaze; he's playful and laughing, "talkative" (almost singing!), and just so wonderfully "snuggly". Charlie is eating heartily and growing bigger every day. But there's something magical about Charlie. He has something most of us do not have. He has an extra chromosome in his number 21 set of chromosomes --giving him 47 total rather than the 46 most of us have. So in number 21 he has three instead of two. They call this "birth defect" Down's syndrome. Specifically, Down's syndrome, trisomy 21. I don't like to think of it as a birth defect at all, I like to say he was "genetically enhanced with Down's syndrome" --as another mommy of a child with Down's syndrome has put it. So, Charlie's growth and milestones will be under a microscope due to his condition. He will endure a life of testing, monitoring, coaching, therapies, and already one major surgery--fixing a hole in his tiny heart. Having been through the heart surgery already and coming out of it with flying colors, I just know he'll handle everything with stride, confidence, strength and resilience. And I will be holding his hand every step of the way.

Something tells me that Max and Charlie will be close one day. Not only are they kindred spirits, they are kin, only 2 years apart. Max is the kind of kid who seems very compassionate and loyal. To me, he lights up a room when he enters it. He has exhibited these qualities since he was very young --15 months or so. Once he took a toy ( a baby toy ) that he had in his toy box and offered it to a neighbor mommy for her new baby. He could barely talk but said, "for the baby." Max was born to be a friend and now a big brother.

Baby Charlie has very similar qualities. I can see it already. Incredibly, moms have a sense of her child, even as an infant. Heck, even before they're born, mothers have a sense of who is inside us. Charlie has a magnetic personality and absolutely beams when surrounded by others. But he and Mommy have a very, very special bond. He's survived a rather difficult pregnancy...my dear mother battled, and lost, to cancer during his entire 9 month gestation--she fought and beat Leukemia, then the doctors' discovered she had another stage 4 cancer in her body (esophageal cancer); she passed away only 2 weeks prior to Charlie's birth; in addition, I had a tear in my placenta and asked to slow down, so I rested for 2 weeks; I had a severe cold during that involved several weeks of a relentless cough....and lastly, my doctor expressed concerns about Charlie --whether he might have Down's syndrome or not, so they sent me to a high risk ob-gyn for testing. So needless to say, I was worn out and felt sorry for my unborn baby who I felt had a less than perfect situation to be born into. My heart ached that he couldn't hear his mother singing and laughing; but rather heard her crying and coughing. But that was how it was. I miss my mother and felt devastated in losing her. So, my baby experienced that with me.