When Chromosomes Connect Us..

As I sit here refreshing facebook over and over checking on a fellow child with Down syndrome who  has a horrible accident at his home I'm reminded of one thing, we ARE one big family connected by chromosomes. It's like a "club" a special kind of club that's filled with love from the east cost to the west coast amd everything in between. When one family hurts we all hurt. We pull together amd rally up for thoughts and prayers. We mean those words of love. I have never met many of the children I follow but one thing is for sure, I care deeply for each of them. When I say I'm praying for you, I'm really praying for you. 

I can't explain the bond we share all because our kids have an extra chromosome. It's a love like no other. No one told me that with Down syndrome not only comes a wonderful child but also comes a huge extended family.  A family who is there when ya need them. We offer and give advice, we laugh, we cry, we share our hopes and dreams as well as our fears. We GET each other.

There is something magical that happens when we do get a chance to get together, no one could prepare you for what your heart will feel. I can promise you that being in a room full of  children rocking an extra chromosome is the most rewarding kind of love you will ever feel. Our kids are pure love and joy.  You can learn more from them than you could ever teach them.  If you get a chance to meet a child with Down syndrome, do it! They will enrich your life so much.  My only regret is why he waited so long to come to me.

I have learned more in the last 2 years than I have in my entire life, more than school or college could teach you. These children teach you the simple joys of life,  how to appreciate and really soak in each day, every accomplishment/milestone
  is huge and deserves a cheer!

I'm honored to be on this journey with so many loving and caring people who really get it.
Thank you to everyone who welcomed us with open arms and hearts, I will continue  to do the same for each family after us. After all, we are one BIG family!
 3:21 #t21 #downsyndrome #love

When Chromosomes connect us...

As I sit here refreshing facebook over and over checking on a fellow child with Down syndrome who  has a horrible accident at his home I'm reminded of one thing, we ARE one big family connected by chromosomes. It's like a "club" a special kind of club that's filled with love from the east cost to the west coast amd everything in between. When one family hurts we all hurt. We pull together amd rally up for thoughts and prayers. We mean those words of love. I have never met many of the children I follow but one thing is for sure, I care deeply for each of them. When I say I'm praying for you, I'm really praying for you.

I can't explain the bond we share all because our kids have an extra chromosome. It's a love like no other. No one told me that with Down syndrome not only comes a wonderful child but also comes a huge extended family.  A family who is there when ya need them. We offer and give advice, we laugh, we cry, we share our hopes and dreams as well as our fears. We GET each other.

There is something magical that happens when we do get a chance to get together, no one could prepare you for what your heart will feel. I can promise you that being in a room full of  children rocking an extra chromosome is the most rewarding kind of love you will ever feel. Our kids are pure love and joy.  You can learn more from them than you could ever teach them.  If you get a chance to meet a child with Down syndrome, do it! They will enrich your life so much.  My only regret is why he waited so long to come to me.

I have learned more in the last 2 years than I have in my entire life, more than school or college could teach you. These children teach you the simple joys of life,  how to appreciate and really soak in each day, every accomplishment/milestone  is huge and deserves a cheer!

I'm honored to be on this journey with so many loving and caring people who really get it.
Thank you to everyone who welcomed us with open arms and hearts, I will continue  to do the same for each family after us. After all, we are one BIG family!
 3:21 #t21 #downsyndrome #love

Don't complain about your busy toddler!

 I look forward to the day I can chase my 25lb toddler. Running down the hall, through the store, at the doctor or anywhere else he needs to be let down and move. Everything he's done so far, like rolling, crawling, pulling up" I looked forward to those milestones too and they finally happened. 

When I think back to the toddler chasing days prior to now, which has been 20 years ago! I don't really remember a lot because it came naturally. They walked and ran and I chased after them. 

Now, while out and about and I hear someone complain about their toddler not sitting still, won't stop moving, keeps running around. I want to politely let them know I will trade places for just one busy day. 

Here is how my day goes when we have a busy day. (like today) I had to go to doctor for myself, I knew this would be hard because I have a toddler and need an X-ray (let's think this through momma) I thought it through, I had no other choice but take my baby with me. 

We sit there, 2.5 hours toddler in lap, wants to move, stand or just get out of my lap. He can't! No one would put their baby on a doctor floor. (I hope not) I'm waiting, standing, walking around. My 25lb toddler on my left hip, left arm is starting to feel the pressure, the throbbing, he's tossing, turning, my arm is getting weaker,  Back is aching, What can I do? Let him walk around? No, Nothing! Hold on and be strong, push through it. That's what I did and I do this a lot. (As many moms do) 

Let's not mention going to the restroom while there, toddler on left hip, holding him on my side as I use the restroom. All while wishing I was the complaining momma of the running toddler. 

Imagine someone giving you a 25lb weight and telling you to hold it up and don't let go. It don't sound like much weight does it? Well, when it's dead weight that you can't drop it begins to feel like 100lbs 

I guess what in trying to say is, stop complaining about your walking toddler on the move. Be thankful, your arms are free when you need them to be. Me and many other mommas are praying to see the day we can chase our running toddler. When we will no longer smile through the pain shooting in our backs and arms from our toddler who we can't put down yet. 

I know he will get there! And until then, I'll keep smiling with my toddler on my hip all while secretly wishing I was the complaining momma next to me with the running toddler. 

Can you see past my almond eyes?

I recently read a comment on a photo of a child who had Down syndrome, the comment read, "your different", you don't look like Down syndrome, "you look like your momma and poppa." 

   Let me clarify a few things, that comment shot me in my heart. Do you really only see my beautiful almond eyes, my lower set ears, my flatter facial features, or maybe it's my sweet my tiny hands. 

  The comment went on to say, "I use to feel sorry for parents who have children with Down syndrome because they won't get to experience the excitement of their children looking like them"! 

                WHAT?!!!!! 

     Please don't feel sorry for me or any other family, I promise if you open your eyes and heart, you will SEE our kids look like us too not just "Down syndrome" .. My son has his brothers hair, his eyes I see in his siblings and mine, his hands resemble his dad's. His attitude is from his momma, his smile is brighter than the Bermuda sun. I don't want you to see just Down syndrome, please open your eyes, see our kids with their siblings and parents. You will learn something  you will also learn that we are NOT sorry, we don't want your pity, 

"Oh that poor mom" "oh that poor kid" 

                      NO!!!!!

       Yes many have the features that are common, but come on! Those kinds of comments make me stop and think of the fight I have ahead of me for my sons schools days. Will his friends only see his diagnosis? I hope not! 

   So, please see past my adorable, blue almond eyes! Please look past my diagnosis and know that I'm happy and my family is happy and we look alike! We are just like you!!!!! 

            Stop labeling us!!!! 

Does he stay home because he has Down syndrome?

 I have been ask so many times why didn't you bring your son? Why don't you just take him with you? Here is my answer. I am not ashamed of my son because he has Down syndrome. I am a very proud momma. (VERY PROUD)He is not a burden or hard to handle nor is he a hassle to just take him where I go. He is a perfect baby actually. I mean look at this smile, how can I not be proud and want to show him off! 

He is just like any other child except 1 thing. One huge thing. Your germs are so huge to my little baby that I can't bare seeing him sick and fighting for his life over a simple cold. A cold that is nothing to a "typical" child is huge to mine. Your child can take antibiotics, rest and be better in a few days. But to my child with Down syndrome a cold can mean his life. Yes his LIFE.. 

I see daily our kids fighting for life after what started out as a "simple cold" they are hooked to every machine possible, breathing is down hill and mom sits there begging for healing and prayers. Mom feels helpless because really she is helpless. Her baby is fighting for life over a simple cold. I've been there, not as bad as some but I've watched my baby struggle for his next breath, scream and cry every time he has to be deep suctioned just to catch a breath. I felt helpless. I begged for healing, I begged for his suffering to ease and to just feel better. 

  So before you judge or question my parenting, stop and think, maybe I know What's best for my child. I don't need or want your germs. Yes, germs are everywhere and in everything we touch. I can't avoid them all but you can bet I will do my best to avoid them during cold season. I love my son, I'm proud of my son and this is why I don't always have my son with me. I want him safe. I want him healthy. I just want to be the best mom I can be for my son and if that means he stays home more to stay healthy then so be it. 

  

  And yes, I'm the mom that will say "Dont touch my child" (if needed) I am his voice and his protector and I will continue to be. I will also continue to keep him home when I feel it's best for us. So! Wash your hands and stop by anytime!:)

And that's why my son is not always with me!! 

Sincerely, 

A very loving protective mom 

What causes Down syndrome?

What is Down syndrome? How did your child get it? Was it something you did? 

1~800 births (approximately) 

Better odds than the lottery huh? 

Every person is made up of chromosomes, we all have 46 chromosomes. 23 from mom and 23 from dad. A person with Down syndrome has 47. They have that extra little chromosome 21. 

Trisomy 21 about 95% of the time, Down syndrome is caused by trisomy 21-the child has 3 copies of chromosome 21 (instead of the usual 2 copies) in all cells.

This is caused by abnormal cell division during the development of the Sperm cell or the egg cell. 

Mosaic Down syndrome. In this rare form of Down syndrome, children have some cells with an extra copy of chromosome 21. This mosaic of normal and abnormal cells is caused by abnormal cell division after fertilization. 

Translocation Down syndrome. Down syndrome can also occur when part of chromosome 21 becomes attached (translocated) into another chromosome, before or at conception. These children have the usual two copies of chromosome 21,but they also have additional material from chromosome 21 attached to the translocated chromosome. 

There is no known behavioral or environmental factors that cause Down syndrome. 

With that being said, there is nothing a mom done during pregnancy that could/would cause a child to have Down syndrome. 

Here is what didn't cause Down syndrome.

Not taking vitimans 

No pre-natal care  

Smoking

Drugs

Drinking

Health

Nutritional

Environment

Behavior 

Medication

Abuse

Age

(Most of them are not good choices but, it didn't cause your child to have Down syndrome.)

Here is what causes Down syndrome.. Abnormal cell division during conception. 

An extra copy of chromosome 21!! Simple! That's it just 1 thing.  

Over 90% of babies are aborted when they have a prenatal diagnosis of Down syndrome. (Mainly Due to lack of up to date information) 

Older moms have a higher % rate of having a child with Down syndrome, yet a young mom at 18 can have a child with Down syndrome. 

Characteristics are but not limited to

Those cute little almond eyes

A gap between the big toe and 2nd toe

(Also known as sandle gap)

A single palm crease in the hands. 

Short statue 

Small nose 

Lower set ears

Children with Ds can do all things "typical" kids can do (they just do it in thier own time frame) no hurry 

If you or someone you know just got a prenatal diagnosis  or are a new mom to a child with Down syndrome, I won't paint you a rainbow and butterflies picture. The doctors appointments are many in the beginning but it slows down I promise. 

The therapy will be harder on you than them. 

Every little thing will make you worry more than with a "typical" child (that's ok) we are moms we are suppose to worry right? 

You can and will make it!! This child will teach you love, patience, understanding and open your eyes to a part of life you never knew existed. 

You don't have to be super mom just be the best mom you can and that's super! 

And if someone ask "how do you do it" "how do you raise a child with Down syndrome? 

I'm a mom! I do what I gotta do! Full mommy mode kicks in. 

Did you say the "R" word? Oh no!

There is a message floating around social media in regards to the CEO devotion vodka. The message was an exchange of emails from him and a former employee, the only message we see if the one where the CEO ask the former employee "how is your retarded kid") The former employee's child was born with Down syndrome. I do not know the full email exchange. I was heated reading this being a mother to a son who also has Down syndrome. I was so heated that I sent a message to one of the recipients of the email and also to the CEO of that said company.

After thinking on this for a few days,here are my thoughts. It's natural to immediately "hate" the guy who said this horrible thing about a child. Who does that right? Who could be so cruel? What kind of man is he? Well I'm sure he's human. He said something very bad in the heat of the moment. (No excuse) have I said something in the heat of the moment? Sure I have, we all have and you wouldn't be human if you said you never did. Yes I agree bringing a child into the conversation was totally wrong. 

As a mother of a child who has Ds that word is very hurtful and disrespectful. This word has been used to "describe" our children for a long time. It's also been a not so good slang word. It shouldn't be a slang word. Example.. "That shirt looks retarded" couldn't you say "that shirt looks horrible?" With that being said, me as a mom works hard to advocate for my child as many of us do. What do we advocate for? Acceptance, understanding,inclusion,respect, and no more hate. Hate is what this guy is getting. A guy I don't know, a guy who many wish his job will be lost and he would "loose" it all. He made a mistake no doubt about that. I ask myself what was the full message being exchanged?We don't know. 

If I help spread hate doesn't that mean my advocating is pointless? I work to stop the hate and perception of my child. I do hate the word myself, has it always affected me? No! Maybe now my eyes are open and I realize what a horrible word it is and how many words could be used to replace that "slang" word. No he didn't use it as slang he used it to describe a child per say, but I do not know the full content of emails and I will just say I hope he leaned a lesson in that word and how it can be hurtful to others. 

I have a best friend who uses the word to describe everything! I've had this conversation with her as well. Does that mean she is no longer my friend? No she is my friend and I know she just needs to use better words. She loves my child, she's a great person I don't wish her dead or to loose all she has. All we can do is educate others and hope it helps. 

I'm ending this with saying, don't use that word it is just not right! And when having an adult argument don't bring innocent kids into it. As a "friend" said recently "we are our worst enemies"  at times. I can't hate everyone who says the word "retarded" but I can help let them know it's hurtful and there is many more words to use. So Mr. CEO I wish you the best and I hope you never describe a child as retarded again.  That's just "stupid"!