Friday, May 29, 2015

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!! 

A very loving protective mom 

Wednesday, April 15, 2015

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  
(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. 

Wednesday, February 25, 2015

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"! 

Tuesday, February 3, 2015

Life after Down syndrome..Who are you now?

 Life before Down syndrome was pretty typical. I worked full time,took care of 3 older kids. I was a mom,nana,girlfriend and friend. I enjoyed music,concerts,dinner dates and dancing. I loved getting my nails and hair done and chatting about silly things. I laughted, I cried and loved to read. You know, just a simple life.

                                                       FAST FORWARD..

   On June 14th 2014 Skyler was born! With much surprise we received a diagnosis of Down syndrome in the delivery room. They held him over my head and said, "we think your son has markers for down syndrome" I looked up at him and I seen those little eyes and I just knew those words were true. What does that mean was going through my head faster than ever. I don't know what Down syndrome is, heck I didn't even know a person with Down syndrome. I am a huge Glee fan so I knew the little "sassy" girl on there had Down syndrome, did that count?  What did this mean for my baby? Is he going to be o.k?. They whisk him away to make sure he was o.k. (they say) Seem like forever before I seen him again. It was only about and hour if that.

   They hand me my sweet 4lb baby boy with those precious little eyes. His dad and I were just happy he was breathing. We didn't know any complications that kids with Down syndrome could have, no one explained anything. Where was a book, a doctor, social worker, another mom who has a child with Down syndrome? I had great nurses don't get me wrong, but no one explained anything to us. Maybe they didn't know what to even say. Some said, "I'm sorry" I remember one nurse who was a past co-worker of mine she congratulated us and said how cute he was also told me everything will be o.k.

   The next day our pediatrician came in she told us everything that could "go wrong" the test he needed done, how he may have a bad heart, and that he needed to go o our local NICU she did ease our mind by at least explaining things to us. She even told us about other patients of hers who also have Down syndrome. He was transferred to the nicu on my discharge date. We stayed there several days while testing was being done.(I could hardly move after a c-section)
   Fast Forward....He has Down syndrome but he's healthy otherwise.....       
Praise GOD!!!!!

    Life after a diagnosis......

   The first few weeks home the visitors came (some did) they wanted to see the cute little baby,hold him and take pictures. They offered support and said all the things you say to new moms, You know "call if you need me" he's cute, Ill see ya soon, try to rest etc.....

   Weeks go by the visitors fade, the calls and text disappear your social media becomes filled with all the other babies and parents who "get it" other parents who you now learn from, get advice from and give/receive moral support. Your life now becomes a new one. your friends fade (wasn't friends to begin with) they start to tag you in all things "Down syndrome" I love seeing it but did you forget I'm still the same person before a diagnosis? I have that same sense of humor, the same laugh, the same feelings. I didn't die over here. I enjoy the same things, the music still plays the same country station. I still enjoy doing my nails and hair, I still laugh at the craziest things and cry over the smallest things. I am the same person I was before the 'Diagnosis" Yes, I have more doctors appointments than you could imagine but I'm still ME!

   I don't want to be labeled as the 'Down syndrome" mom. Yes I have a son with Down syndrome but it doesn't define our family, as a matter of fact we don't even see Down syndrome we see SKYLER ,OUR SON  He has enriched our lives more than we could imagine, hes opened our eyes to the beauty in every second of life with him. He has taught us to learn about all children and their families. He has inspired us to create Skyler's smile baskets to welcome other new babies and parents. He gave me life again he has filled our hearts with so much joy.

   Life after a Down syndrome diagnosis is o.k.!! I ask if you have a friend or family member who just received a Ds diagnosis, Don't forget about them, include them, congratulate them, call or text them. They are the same person they was before the diagnosis and when you disappear it can make them feel more lonely than a diagnosis ever could. (my opinion)  
Who am I now? I am the same person, take the time to talk or ask questions, you will see I'm still me.

                                                                   Skyler's proud momma