Viewing entries in
Down Syndrome

3 Comments

Prenatal Diagnosis Story (T21)

DISCLAIMER: Alright, so this isn't the first time Im sharing this story, but its the first time since our life has gone public. The last blog post I did about my prenatal story and how relentless the doctors were about terminating based on my diagnosis received A LOT of hate. I was told that because of the place of privilege from which I speak from, I pretty much shouldn't have a say in the matter. As if having a wealthy family to help you, or not having help is a reason to terminate any life. So if me choosing to love and carry to term a pregnancy that was "doomed" by doctors from the start offends you, then stop reading. Because you will NOT change my opinion on the value of life. I speak for those who cannot speak for themselves because they aren't valued. And if that offends you, then I really don't know why you're following me. 

NOW... lets get to the good stuff. 

Brian and I married on memorial day weekend in 2015. Shortly after we began our journey with the army, and in August we found out we were pregnant. Towards the end of September (around 13 weeks pregnant) I came home from grocery shopping one day, and looked down and I was loosing lots of blood. I drove myself to my OB, where they performed an emergency ultrasound. (This was the beginning of fighting for my child's right to live.) After an incompetent nurse couldn't find the heartbeat on the doppler she told me "oh it died". After I freaked out, she said that she meant the batteries in the doppler. So I demanded to see a professional and have an ultrasound. They were able to find a heart beat and the baby looked healthy, but I had just received our results for the chromosome test, (something we only did so that we could find out the gender before Brian left for BCT because we would have no communication). 

The results of this test are not always accurate. A lot of people receive false positives, and false negatives because the test is a screening of the placenta blood rather than the amniotic fluid. And because I was having complications with my placenta, I was warned that the test could have been a false positive, but I wouldn't know for sure until I did an amnio. Something I didn't want to do because of the higher chance of a miscarriage and I was already having complications. 

After the exam, they told me that my cervix was open and because my baby could potentially have down syndrome I would most likely miscarry before I could make it to full term, so they weren't going to "artificially preserve her life" by stitching my cervix closed. So this began my bed rest. ( Now if you think I am "playing God" by trying to save my pregnancy from a miscarriage, then what is your argument for doctors and modern medicine? Or Firefighters, or nurses? Or Cops? Saving a life is not playing God. And I'm sure if you were the one needing your life saved you wouldn't consider it a crime.) 

Bed rest followed until I was about 20ish weeks pregnant. I bled most if not all of this time. Brian had left for the next 8 months at this time.  Because of the positive screening, they ran extra tests. My NT ultrasound came back normal, no markers for Down Syndrome. My anatomy scan came back normal other than a small focal point, which had I not done the genetic test they would have dismissed as a soft marker. So to be safe I was sent to a specialist at USC Hospital in Pasadena. I was first briefed by a very cold and robotic genetic counselor. I was made aware of my options, and repeatedly asked to do further testing to get a concrete diagnosis before it was "too late". A CVS and an Amnio. I declined. Then I saw the fetal heart specialist. I wish I could remember his name, but I will forever remember his face. As I laid on that cold hospital bed in that dark ultrasound room, shaking from nerves, he approached my case with absolutely no care in the world. "Now, you're farther along than normal gestation for an amnio, but if you're worried we can do an Emergency procedure and I can rush your results so you have time...". We had not even done the ultrasound at this point. I declined again. He began the vaginal ultrasound. Now I can't read anything on those things, but I immediately knew something was wrong. With my basic knowledge of the human body, I knew both halves of the heart should be very similar in size. Adeline's were not. One was significantly smaller than the other. As if it was just not going to develop. I instantly started crying. 

"Because we don't know if you're fetus has Trisomy 21, there are a few different reasonings for this heart issue. Now if it is normal, then the heart could possible develop later on in utero. But if the fetus does have T21 then you're looking at some major heart issues. If it can even survive a stressful birth with this heart, it would then need to undergo open heart surgery or a transplant. And thats if you make it to full term. But theres no way to know for sure without an amnio." 

I didn't speak much after that. I cried a lot. My mom held my hand and prayed the whole time. I don't remember much of what went through my head, other than fear. Fear of losing her before i even got to meet her. Fear of meeting her and not getting a chance to be her mom. Just Fear. And sorrow. Sadness that this perfect living little girl who I had grown so attached to was being talked about as if she was already dead. This was the point where I decided I need to "know for sure". So out of fear, I consented to an Emergency Amnio. 

"I know you said no to terminating, but no one would blame you. Having kids is hard, having kids with special needs is even harder. Its going to be all about doctors visits, and surgeries...." Im sure he went on and on as that long painful needles was pierced through my stomach into the warm safe home my daughter was living in...but i tuned him out. I just cried and prayed, Prayed that her heart would heal, prayed that the needle wouldn't hurt her, prayed that I wouldn't miscarry. Prayed that she would get to live. Prayed that something would be wrong with me instead. If it was between her living or me... that it would be her. 

It would be about 2 weeks before we would find out the results. "My office will call you with the results, unless there are other findings". Then that was it. I remember sitting in the passenger seat as my mom drove us home, and I felt numb. She asked me how I felt, and I remember saying something along the lines of "I just know she doesn't have Down Syndrome. She'll be fine." Im not sure if this "peace" I had was my way of dealing with everything I had just heard, or if i was going through the denial part of this healing process.

On December 15th, the phone rang. It was my OB. " Hi, Hannah. We have your results from USC and your OB would like to meet with you tomorrow to discuss some other findings". Silence. "What other findings? I was supposed to get a call to confirm or deny the T21 diagnosis." Silence. "Uhhh...yesss...welll... I cannot tell you this over the phone, and the Doctor really needs to discuss the other findings with you in person, but he isn't available until tomorrow afternoon." Loud Silence. "Hmmm. ok. Then ill be there tomorrow. Goodbye." 

Tears. Hot, burning, tears. What other findings can be picked up by an amnio? Google became my biggest enemy that day. Cancer, Fatal Diseases...the list just got scarier as I kept researching. 

Those next 24 hours was full of anger, fear, acceptance. I remember being so mad at God. I promised Him that if He took her from me, i would never speak to Him again. Then I read Hannah's prayer to God in Samuel. 

10 Hannah was in deep anguish, crying bitterly as she prayed to the Lord. 11 And she made this vow: “O Lord of Heaven’s Armies, if you will look upon my sorrow and answer my prayer and give me a son, then I will give him back to you. He will be yours for his entire lifetime, and as a sign that he has been dedicated to the Lord, his hair will never be cut.[b]”- 1 Samuel 1:10-11

My prayer became like a bargain. A plea. A trade. Never in my life have I felt the need to actually get down on my knees and plead a prayer to God. He usually always meets me where I am at. But this time was different. I had never in my life prayed so hard, so passionately and so serious. My life was not my own. I was ready to give it up. To lay it down in exchange for my babes health. My life for hers. This is the moment I became a mother. A love I have never in my life experienced took over me. And by the end of the night, I was at peace with dying.

Now I know all this sounds so morbid and sad, and a little dramatic. But add some intense pregnancy hormones, my hormone imbalance, these dramatic situations, and an absent husband and you get an irrational woman. Plus 24 hours to mull over every possible bad scenario would make anyone crazy. But I truly believe that I needed to spend those 24 hours in the darkest hole I had even been in to come face to face with the reality I was about to be given. 

December 16th, 2015. " Now I know you say you don't plan on terminating, However.... Your results show that your daughter does have Trisomy 21....Down Syndrome". I waited... and waited... and still nothing.... 

"Thats it? Thats all the results say?" 

"Uhm. Yes?" 

"And theres nothing else? No other findings?"

"No?"

"Ohh...okay cool". 

"I...uhhh... Are you okay? I know this can be shocking. I have a cousin who has Down Syndrome and he's the favorite of the family. They are just so happy....." insert a bunch of non sense about how all people with down syndrome are the same happy go lucky people. 

"Yeah, Im fine. I have worked with people who have Down Syndrome. Their the best. Im not worried." 

I think my lack of emotion shocked him. And I think I shocked myself. Everyone I had talked to before we knew the amnio results, always shared with me how they had to go through a grieving process. The angry stage, before they could reach acceptance. I always waited for that part to hit me. But it never did. Now i know that part of the healing process is very important for a lot of people. Its necessary for most if not all. But because of my unique situation, after those past 24 hours, receiving "just" a Down Syndrome Diagnosis was my best case scenario. I was getting a shot at life with her. It was going to be a fight, but it was going to be worth it. 

A few short days after all this, Brian came home for 2 weeks for Christmas leave. He didn't know anything that had happened over the last few weeks. I remember being so nervous to tell him. I didn't know how, I didn't know when. But I will never forget his response. 

"So babe... while you were gone they found some things wrong with the baby. I had to see a fetal specialist, and there are some issues concerning her heart which resulted in me getting an Amnio to determine if she will have down syndrome or not... And she does." 

"So?"

"Soo... our child isn't going to be "normal". 

"Hannah... we already knew that. Me and you are the farthest things from normal... but she's ours and thats all that matters. Normals boring anyways" 

And that ladies and gentlemen... is why I love this man. 

While he was home, possibly 3 weeks after I had received the positive diagnosis, we were sent to Children's Hospital LA to meet with a team of fetal specialist who would do extensive ultrasounds on all of Adalines body. Mainly the heart, since that was our biggest concern. I remembering being so at peace, and once again just felt like she would be fine. After 3 hours of ultrasounds. the doctors came to me and asked me why I was there. I told them my daughter has down syndrome and they are concerned about her health. Somehow, ( All glory to Jesus Christ) in the past month from when the amnio was performed and her heart was clearly not developing, to this point and time, EVERYTHING was working as it should. He told me had I not done an amnio he would not believe he was looking at the organs and fetal development of a T21 pregnancy. My baby was healed. 


The next 10 weeks or so were a breeze. I finally got to enjoy my pregnancy and prepare for her arrival. Labor and Delivery was the best and worst experience ever. I was not nervous or scared at all. I was so calm and excited and so ready to meet this girl who had already changed my life. She was taken from me right away and put in the NICU, but mostly because of an infection she had because I had gotten sick towards the end of my pregnancy from traveling across country to Brians graduation, and transfer to AIT. 

Now, if Im being honest, I still didn't believe Adaline had down syndrome after the diagnosis. I honestly don't think I was in denial. I just think I was uneducated. I was really denying all of the stigmas I knew about Down Syndrome. Down Syndrome has never been and never will be, a way I describe my daughter. She is Adaline Grace. She is strong. She is a fighter. She is love. She is joy. She is flawless. So what...she has 3 copies of the 21st Chromosome. She is healthy, and loved and ambitious. She is changing the world. She is Adaline

3 Comments

What Life For My Daughter Will Look Like With Trump As President

My heart feels so much these last couple days. So many emotions combined I can’t just pick one. I’m not even sure I know how to describe how I feel. Other than sad. I know this emotion very well. I’m saddened for each and everyone one of you. I’m saddened for the Hilary campaign. Thought I don’t stand with her, I was still moved by the tears that were shed by her supporters. We all know what it’s like to feel blindsided, devastated, hopeless, and heart broken. It is not a good feeling. My heart hurt for Hilary as she gave her concession speech. You could see the tears she was holding back. This woman spent so much of her life preparing for this moment. She “knew” she would be president. I knew it. The world knew it. And though I don’t agree with 99.99% of what she believes in, she is human. She feels and hurts like we all do. Just because my morals and beliefs don’t align with hers, doesn’t mean she is any less of a person. The sins she has committed are just as devastating to God as the sins I have committed. As humans we have a different grading scale. But to God, sin is all the same. He still created her and died for her. So instead of condemning her to Prison, pray for her. As for Trump, I’m saddened for the judgement and ridicule he will receive. To have everything he’s said and done to be dissected and talked about by the world. Can you imagine if that was me and you? We all would be considered monsters. I’m saddened for what his future holds for the next 4+ years. The hard decisions he will make, the impossible tasks he will have. For his marriage. His health. Being president has to be the hardest job. But he is so determined to do what he feels is best for our country, knowing the price he will pay for taking this role. I am however saddened that we’ve come to this. That a celebrity is running our country. I’m hopeful that the men he will be surrounded by can help to mold and shape him into the president everyone wants him to be. I’m saddened for his family, his children. For all of us. We’ve let the media manipulate our minds. LGBT, African Americans, Hispanics, Women, Muslims, I hope you know that you are loved. Even if we are different or have different values. It breaks my heart to hear that these people feel like they are hated or less of a person. Because the world labels my daughter as “different” and I hope she never feels unloved or scared in this free country we live in. But, please keep in mind that Trump is just a man. He might have a big title and responsibility, but he is not the one who will stand by your side when you’re going through highs and lows. Hilary would not have been that person either. But your fellow Americans are. Those neighbors, family members and friends who may have different beliefs than you will though. So if you’re mourning a future you thought you would have, then by all means mourn. You have the freedom to do so. But don’t spread hate and violence. That won’t get us anywhere. Channel those feelings into change. Be the change you want to see. And set an example for your kids. They will hear and see the way you talk about these candidates and will talk to others that way. And that other could be my daughter. Or yours. Let’s stop letting the media warp our minds. Turn off the phone, go out and converse. Do research. Share with others your views and respect each other’s differences. Love each other. And find hope that there is One who rules over all. If you can’t follow under trumps laws, then follow the Lords. Because that is the one that will truly decide your life. And I can live with that. 

As for the life my daughter will live now that Trump is president. Boy oh boy. This ones scary. For starters, lets acknowledge that we all need to be way more careful about what we say and do in our lifetime. I’m sure Melania never would have imagined the entire world would judge her for the decisions she made in her career. Let alone that we would watch her wardrobe and how she could look as the First Lady. And Trump, the countless things he’s said about women,Hispanics and even special needs people. Though I know a lot of people can defend him and how the media twisted things, he still said things that were able to be publicized and twisted whatever which way. This is why we ALL should be above reproach. Think before you speak. It is forever out there, especially on social media. 

Within the first couple hours of Trump becoming President elect, people have learned to spew hatred and violence against those who are different than them. Now what will that look like for my Daughter who is labeled different in every aspect of her life. Will you hate on her or call her names because she’s white snd has red hair. Or make fun of her because she sounds funny when she talks? Or redicule her for her upbringing. Will she be bullied or degraded? God I hope not. 

We need to appreciate each other’s differences. How boring would life be if we were all the same. Or thought the same. There is beauty in uniqueness. Embrace different. Embrace love. Embrace respect. 

Lastly, our children are growing up in a world controlled by the media. And this election proved it. The media ran this election. For the last year I’ve read people’s rants, comments, blogs, watched videos and laughed at memes bashing each candidate. But I rarely, if ever, saw conversation between the opposite sides. If there was dialogue it was arguments and debates that were not geared around education, rather insults and judgement. And this is probably why the world was shocked by the election. I am guilty of this. I have blindly believed the click bait, the videos orchestrated by the opposing side, and the articles released during this past year. I did not converse with others or share my thoughts for fear of being called names. I did not sit down and ask people why they are scared or passionate about the potential outcomes. I went to the media for news. And this has got to stop. For all of us. For the sake of our children and our legacy. Everything can be twisted and used to benefit others agenda. Let’s stop letting the faceless people behind the cameras and editing control us. Get out there and experience real life. Not life through a glass touch screen. I pray my daughters beauty is seen through your eyes, in person, that can feel and see the unique of her soul. Not her instagram pictures.
I’m proud to be an American, but I’m even prouder to be the daughter of the King who still holds the throne. No president can change that.  

Down Syndrome Awareness Month

A year ago, October 2nd, we found out our growing baby was not only going to be a little princess, but that she was also going to have Trisomy 21. Down Syndrome. There were so many fears and questions that came with her diagnosis. Fears and questions I look back on now, and can’t help but laugh. As Down Syndrome Awareness month comes to an end I hope to answer any of the questions my readers have. And I hope that through my blog, and Adalines life you too can see that there is nothing scary about Down Syndrome.

Here are some of the most frequent question Ive been asked as well as some of the questions I had before embarking on this beautiful journey

“Are there different types of Down Syndrome?

For starters there are 3 types of Down Syndrome.

  • Trisomy 21– More than 90% of Down syndrome cases are caused by trisomy 21. An extra chromosome (chromosome 21) originates in the development of either the sperm or the egg. When the egg and the sperm unite to form the fertilized egg, three (rather than two) chromosomes 21 are present. As the cells divide the extra chromosome is repeated in every cell.
  • Mosaic Trisomy 21 – This is a rare form (less than 2% of cases) of Down syndrome. While similar to simple trisomy 21, the difference is that the extra chromosome 21 is present in some, but not all cells, of the individual. This type of Down syndrome is caused by abnormal cell division after fertilization. The name comes from a random order of normal and abnormal cells (a mosaic). In cellular mosaicism, the mixture can be seen in different cells of the same type; while with tissue mosaicism, one set of cells may have normal chromosomes and another type may have trisomy 21.
  • Translocation Trisomy 21-Sometimes (in 3-4% of cases) part of chromosome 21 becomes attached (translocated) to another chromosome (usually the 13th, 14th or 15th chromosome) before or at conception. The carrier (the one having the translocated chromosome) will have 45 chromosomes instead of 46 but they will have all the genetic material of a person with 46 chromosomes. This is because the extra chromosome 21 material is located on a different chromosome (the translocated one). A carrier will have the extra material but will have only one chromosome 21. The carrier will not exhibit any of the symptoms of Down syndrome because they have the correct amount of genetic material.

“How severe is Adaline/are there different levels of DS?” 

I never really know how to accurately answer this question. She is only 7 months old. Anything can happen. I know that she doesn’t have congenital heart disease. Thankfully her heart “healed” its self in utero and open heart surgery wasn’t needed at delivery. But she is still a baby. She needs what all babies need. She eats, and sleeps and poops. She meets with an OT (occupational therapist) once a week and is assessed every 6 months. During her first assessment she scored average or above average on everything. Her social (both expressive and receptive) were far beyond her age level. But whether she is “severe” or not shouldn’t matter. She is amazing no matter how quickly or slowly she does something compared to your “typical” child. But…. for example, Adaline still cannot crawl or sit up fully unassisted. DS babies tend to butterfly out their legs with prevents them from being able to crawl as easily or sit unassisted. And she would rather stand than sit. We have to force to bend her legs so that she can sit, but she fights it. She would rather stand. And as much as I don’t want her crawling anytime soon, I know how important it is for her development. So were being proactive with her therapy. I know she will get it when she’s ready.

“Why doesn’t she look like she has down syndrome?”

And as much as I appreciate the compliments everyone gives her about how gorgeous she is (which I have to agree, she’s the most beautiful thing Ive ever seen) I can’t help but wonder what those same people will think about her when she’s older and those physical attributes start to show more? Will she be less beautiful because you can tell she has down syndrome? My hope and prayer for her life is that she helps change the face of beauty in this world we live in. That when we say people are beautiful, it is because we see their soul first before their outward beauty.

“What is her life expectancy?”

Life spans have increased dramatically for people with Down Syndrome. In 1910, a baby born with DS often didn’t live to age 10. Today, someone with DS can expect to live to age 60 and beyond, depending on the severity of health problems.
 

Will she be able to drive/live on her own/have a job?

A lot of adults with down syndrome are able to obtain a drivers license, and hold a job on their own. There is such thing as Shared Living where an adult with DS would share a home with an adult without DS. The “typical” roommate is compensated for his time and support with a salary and reduced rent. Some families pay a direct salary to their child’s roommate and others provide other compensation such as food or transportation. As for Adaline, my awesome parents have built a back house that they intend to give to her when she wants some independency and to learn how to live on her own.

Is there a “cure” for Down Syndrome?

When I read this question….I couldn’t believe it was a valid question. Just like there is no cure for brown hair or green eyes, or big feet, or being short or tall there is no cure for Down Syndrome. You are born with it. And my daughter does not have Down Syndrome because I was switching birth controls at the time when I became pregnant. Down Syndrome is a genetic mutation of chromosomes. Not something that could have been prevented, or caused because I got a tattoo before I had taken a pregnancy test.

DO’s & DON’Ts

  • Do say: “typical” when referring to non DS people. Do NOT say: “normal” because really, what is classified as normal now a days. Me and my husband are the farthest thing from normal.

  • Do NOT say: Retarded. Though it was once the proper way to describe any form of special needs, it is not proper now. It has a negative connotation and is hurtful to parents and child with special needs. Our children may be delayed in certain areas but they are just as valued and loved as any child.

  • Please do: be understanding and patient. Encourage your children to be friend the “un-normal” kids at school. I fear the day Adaline is left out of school activities because she’s slower than normal.

  • Please don’t give us your condolences: We are not sad, we are not mourning, and we are not burdened. We are in love, and excited, and thriving. Yes we have hard times, but who doesn’t. Rejoice with us. A life was given to us. She needs all the same things your children do.

  • Please don’t thank me: What I did was not heroic. Keeping a child with special needs does not deserve a pat on the back or an award. She is my child. I fought for her, I believed in her and I advocated for her. Something all parents do for their children. Typical or not. Healthy or not.

  • Please educate: Educate your children, your family members, yourself. Thankfully we live in a society that has been exposed to special needs. But there are still those ignorant people. And kids who just repeat what they hear. Teach your children to see beauty in someones soul. Not the placement of their eyes, or the shape of their nose.

  • Please DONT offer parenting advice: Typical or not typical every parent is different and every child is different. What works for you may not work for me. And we have no idea what the other goes through on a normal basis. Sharing things that may have worked for you is one thing. But critiquing my parenting or telling me not to do something will simply just unleash the beast…

 

I hope I was able to answer some of the questions you have about Down Syndrome. And if you have anymore, please let me know. I will do my best to answer them. Please remember that every child is different. Down Syndrome or not. And not all Down Syndrome babies are the same. They aren’t “Forever Babies”. Now as for Adaline, she will see an OT, a PT, an optometrist, an oncologist and many other specialist. This does not make her life less valuable. There is nothing wrong with her, we are simply being proactive.

Thank you for being apart of Adaline’s Army. Now enjoy some photos form the Buddy Walk this past weekend.  Click Here to watch the video.

 

 

Things NOT to say to A Parent {of a Special Needs Baby}

So far my walk through this special needs parent life has been encouraging, apart from the doctors during my pregnancy. I have been introduced to wonderful mommas and dads who too share the bond of parenting a special needs child. The strength and support that comes from these wonderful parents is unlike anything I’ve ever seen. We are all complete strangers but we will go to bat for each other and our kids. We have a place to vent when family, friends and strangers have offended us with their loving but uneducated comments. For those that have offended, you most likely don’t even know you have, which is okay. We aren’t upset at you, at least I’m not. I’m aware this situation is something you’ve never experienced before and aren’t sure how to say things. It took me lots of tears and silent nights, and research to know how to handle this new life. And I’m still learning. I’ve struggled with writing this blog because I hate offending people or making them feel bad. But I was quickly reminded that I am my child’s advocate and defender first and foremost. So that means I might offend you too, but I do it out of love for my child so please don’t be angry with me. I know you love me and my child. 

As all new mothers have experienced the fragile yet life changing moments your child gives you, the feelings of being an inadequate mom sometimes outweigh the joy they give you. At least it does for me. When my baby cries, I stress out like she’s telling me I’m doing something wrong. (I know all babies cry, but I’m telling you mine doesn’t unless she’s very angry and ive done something wrong.) My heart instantly breaks, my eyes fight to hold back the tears, and my mind goes a million miles an hour trying to figure out how to be a better mom. 
Here is the first thing you should never say to any mom when their baby is crying: “What are you doing to that baby?” I know you don’t mean to make us feel bad with that question, but in a moment of already high stress and emotions you’re reminding us of how bad of a mom we already feel. Our child is telling us already, we don’t need you to too. Maybe instead ask us how you can help, or just let us deal with it on our own. We would never purposely harm our child or make them cry. And I know you already know that. Just sometimes there isn’t a place for jokes. 

When our baby is fussy or upset do not say “ohh, the baby just needs his/her grandpa/grandma/aunty/insert name.” We know you don’t mean to make us feel like we are failing at our jobs, but as a mom I am supposed to be the one who calms her fears or dries her tears. Instead those comments can make us feel like you think you could do a better job than us. Which maybe you could because you’ve been a parent before, but now it’s our turn. But instead, maybe ask if you could hold him/her so we can relax. Chances are I will be more incline to let you have her if I’m not feeling like a bad mom. 

“Oh let me do it”. Just like us as new parents shouldn’t help them roll over because they need to learn on their own, we too need to learn how to properly change a diaper, give a bath, feed them, dress them. Teaching is always a better alternative. 
This one is too wide of a topic to address each scenario, but just because you did something different when raising us does not mean how we do things is wrong. Each baby and parent is different and we will find what works for us. 
When speaking to a parent of a special needs child: 
Depending on what diagnosis you are dealing with the questions will be different. Some questions I’ve received regarding Down syndrome have seemed so outrageous to me I’ve realized how uneducated people are, so I can’t get mad. I simply smile and bite my tongue (most of the time). 
1. I didn’t know black/Asian/Mexican people could have Down syndrome babies? 

• well, surprise they can. It is not an ethnic created “disorder”. It is simply just how the genes mutated during conception. Down Syndrome babies can be white,black,brown, have green eyes or brown eyes, red hair or black hair. They are not limited in their appearance. Society already limits their ability, let’s not limit their traits either. 
2. Why doesn’t she look like she has Down syndrome?

• my daughter is 2 months old. She is a new born. She is not a DS new born. She is just a new born. Yes we are lucky enough to not have tons of health problems and spend most of our time in the hospital, but there are “normal” new borns who also spend a lot of time in the hospital. Not all Down syndrome children are the same. Just like not all “normal” people are the same. (And can we find a better common term to describe most of the population? Who determines what’s “normal” anyways. ) 
3. “She/He looks so downs/autistic/enter diagnosis when she does that ” 

• well, no she doesn’t. She looks just like her self. Down syndrome is not who she is or what she looks like. And I personally don’t ever want my daughter hearing that she looks like a certain label. She can look like any one of her family members or her doppelgänger, but that’s it. 
4. Her diagnosis does not and should not be all you talk about with her or me or your friends. If she was “normal” you wouldn’t say “my normal child is _______”. She is not and will never be my “Down syndrome child”. She is simply my child. Just like she is simply your granddaughter or niece or friend. Her diagnosis is not a talking point or selling point. We don’t need to warn others she has Down syndrome, it is not a disease or something to caution people on. Heck if they are strangers they don’t   even need to know. Again, you wouldn’t tell the store clerk “my normal child is turning 3 months tomorrow”.
If you have said any of these things please do not feel bad. I believe it is my purpose and Gods plan for me to be an educator and advocate for not just my child but all special babies and their parents. Being a mom is already hard work, so let’s make it easier on us parents of a special needs kid and educate our selves and think before we ask absurd questions. I’m also part of this. Down syndrome is not the only genetic disorder. It’s just the only one I’m educated on. I too would ask silly questions regarding things I don’t know if I had never gone through this journey. 
I know this is just the beginning of being offended and I will have to get tougher so I don’t break down every time these things happen. But it’s my job to address them and also make it easier for you readers to have a glimpse of what it’s like to be in our shoes. 
On a brighter note, If you are apart of Adaline’s army you are part of something bigger than you know. She has the most loving family and support system. Her grandparents are absolutely in love with her and so are her aunts and uncles. And well, her parents love her the most. And all of you are a huge part of her life even though she won’t meet all of you I wish she could. I know she will always feel loved and beautiful because of you. You have made me one happy and thankful momma.