MOSAIC MOMENTS

I’ve known Marriah for a while now because of our great support group through IMDSA. She always brightens our days with stories of her young Gideon who has mosaic Down syndrome. But I didn’t know Marriah’s story. I have always loved hearing about Gideon and when she shared her story, I fell in love instantly with him! Gideon is such a happy little guy and he is so lucky to have a mom and dad that love him as much as they do! It shows through Marriah’s words. This baby is, without a doubt, loved with every bit of emotion Marriah has. And, he is such a cute little guy with his infectious smile and round, rosy cheeks, that I am sure he melts every heart that has the honor to cross his path!

I am sure you will agree when you read about Gideon…The Mighty Warrior…

My son Gideon is now 17 months old and I have to tell you, he is the best part of my life. I found out at 20 weeks that he may have Down syndrome. I was very scared and I thought my world came crashing in on me. I didn’t know anything about Down syndrome. I talked to a genetic counselor before my level 2 ultrasound, and all she told me is what DS was genetically, and that my options are to keep him, abort, or give him up for adoption. She said you are early enough along to have an abortion.

Well an ultrasound even confused me more. They told me they didn’t see any physical signs of DS but to find out for sure I should amnio test. I said, “What’s the point, I want him anyway, and I could miscarry.” The doctor told me, “There is more of a chance that he has DS than of you having a miscarriage.” What a strange thing to say. After I refused again he told me to do my research because a 1 in 100 chance is still high for my age (24 at the time).

So I went through my pregnancy thinking 1 in 100, that’s not me. And I spent my time being pregnant a happy one. I did do it alone though. Me and his father split up shortly before I found out I was pregnant and he had little to nothing to do with the pregnancy. He lived about 2000 miles away at that.

Well on Mothers Day 2007, I went into labor; that was also the day after my baby shower. I was going to have my son Gideon 6 weeks early. After 28 hours of labor, Gideon was born. Because he was early, and they heard a heart murmur, there were many medical staff members in the room. They cleaned him up, and his cry sounded very strange to me, I looked at him and he looked like he had DS. They let me hold him and all I could think of that moment was, “HE’S PERFECT.” After they took him away, one of the doctors came in and told me they suspected he had DS.

At that moment, I cried, I cried for my son and myself. I didn’t know if I could handle it. I felt like the child I dreamed of never came, the dark American Indian skin like his father and his fathers dark hair and eyes, my nose and smile. He’d be the smartest kid in class, and go to college, get married and have kids. But those dreams disappeared with that very same sentence. But what I didn’t know then that I do know now, is he can go to college, he can be smart, and yeah he was born with reddish hair, light skin, my eyes and his dads nose and smile, (the total opposite of how I pictured him) he is so beautiful. I was also told he has AVC defect on his heart and may need surgery later on. After a couple days of shock, I started to fall in love my son more and more everyday. The nurses were great and family was pretty supportive. I remember his doctor peeking her head in the door and saying, “well the results came back, and your son has the mildest rarest form of DS called Mosaicism, this is where some of his cells have the extra 21 chromosome and the others are normal.” I immediately wanted to learn more. So I went online in the hospital and found MOSAIC MOMENTS and IMDSA. I introduced myself and Gideon and the journey went on from there. I get wonderful advice, support, and prayers from all of you and I am thankful for this place where we can openly talk about our kids and brag too!

Gideon had his first heart surgery when he was 4 months old. He almost died. It was a very hard thing for all of us to go through and almost a year to the day, my son had to have his second heart surgery which went way smoother this time around. That was only 5 weeks ago. Overall, my son has exceeded doctors expectations, (he’ll never be able to breast feed, which he did exclusively at 3 months, he might not make it through this surgery, which he miraculously pulled through the next day). Its as if he’s silently saying, “Do not tell me what I can or can’t do because of my having MDS.”

And to this day, I agree with him. I will give him all the extra time and help he needs and help him to reach his fullest potential. He is a very funny, bright, daring, stubborn, handsome little boy. Gideon loves patty cake and peekaboo and he blows me kisses when I say “I love you.” And up until just 3 months ago his dad never met him. He now lives down the road and loves him dearly and gets to see what a wonderful son he has. Gideon loves to dance, he wiggles his body to every tune, he loves to smile and make people laugh with funny noises and faces, and his laugh is contagious. He waves bye bye, he says, momma, daddy, more, baba, and he can sign more, all done, cheese, eat, milk. His favorite song is ABC’s and he loves country music. He can pull himself up to stand and we are now working on getting him to stand on his own. He has crawled since he was 9  months old. He is the strongest person I know! He is my little hero.

His name Gideon comes from a man in the Bible who was a warrior for God, his name means, “mighty warrior,” and trust me, my son definitely lives up to his name. He brightens the hearts of everyone who meets him.

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