What Does A Healthy Child Look Like?
What does a healthy child look like? That is the topic that came to mind after watching a story shared on The Today Show yesterday about former Olympic gymnast, Shawn Johnson East and her husband Andrew East. They openly shared their pregnancy struggles and possible complications with their unborn child.
While there were possible issues with this precious child’s kidneys and umbilical cord, tests were also done to check for Down syndrome. They stated if the tests came back showing their baby has Down syndrome, they would love that child more than anything; but, like any parent, they just wanted their child to be healthy. They also shared tremendous relief and rejoiced that their unborn child doesn’t have Down syndrome.
This has many parents that have the privilege of having a child with DS very offended and hurt. Many feel the couple’s vlog posts and how the story was presented on The Today Show insinuated that DS equals unhealthy. So many parents are tirelessly advocating to show what Down Syndrome truly looks like. It’s not scary or to be feared. There is beauty in one who has Down Syndrome, because God created all of us in His image and everyone has purpose.
As I watched the video the East family posted and after hearing negative reactions from my community, I honestly reflected on the time surrounding Savannah’s prenatal diagnosis and misdiagnosed heart condition.
One MD told us she could only see three out of the four chambers of her heart and an ultrasound technician told us without legal authority or sufficient testing, that Savannah probably had DS. She said this with my daughters (12 and 10 years old at the time) present. With no knowledge of DS and being blind sided, I could relate to the East family’s emotions. What is the common denominator between us? Fear and ignorance.
I actually prayed that God would heal Savannah after I found out about her prenatal diagnosis. I was numb and even said out loud “I don’t want a special needs baby”. Does that sound selfish and wrong? YES! However, I was ignorant and overwhelmed with fear of the unknown. It took over my faith at times. Someone reminded me that God never makes mistakes. He doesn’t, but I do. My mistake was feeling that way and saying what I said. I was wrong.... so wrong! That is why I blog and openly post about Savannah. I saw the light after being in the dark and am learning to give myself grace! Being a living testimony will show others that DS doesn’t mean unhealthy. Whether one has DS or not, there will be and can be health issues ranging from an ear infection to cancer. “Health” isn’t based on an extra chromosome, race, or our sex. Are children with Down Syndrome more of at risk for certain health issues? The answer is “Yes!”, just as women are more at risk for osteoarthritis, heart attacks, and urinary tract infections. African Americans are at greater risk for diabetes, high blood pressure, and heart disease, but this doesn’t mean African Americans or women are “unhealthy”.
My youngest daughter, Savannah, has Down Syndrome. Thankfully, she was never in NICU. She was never on oxygen. She never had a feeding tube. She breast fed for three years and has never had formula. Savannah has never had an ear infection. However, Savannah did have open heart surgery to repair a Atrioventricular Septal Defect at the age of one. Today, the physicians can not even hear a heart murmur! To me, that shows how strong she is and how good God is, not that she is “unhealthy”.
The word that continues to infiltrate my heart and mind lately is “grace”. I am writing about this presently, and it parallels with this topic perfectly.
As many are upset from the reaction the East family showed and how Down Syndrome was portrayed as “unhealthy”, let’s remember to give grace. Grace has been given to me over and over. As we give grace, let’s also continue to show all the beauty and love that is in one with Down Syndrome. There will be struggles in our lives and health issues whether one has DS or not. “Healthy” isn’t limited to the physical, but it is also about a mindset, an outlook, and attitude. With every post, with every community service, and with every speech we are able to humbly share, let’s continue to show love while we educate others on what Down Syndrome really looks like. Let’s continue to give grace because grace and love is what will heal all that is truly “unhealthy” about how our society views Down Syndrome.
Marching To The Beat Of My Own Drum
“Marching to the beat of my own drum and loving what makes me different with no concern of what others think”.... THAT is what Savannah continues to teach me!
As I closely watched and followed Savannah on the splash pad here on base, I had to interpret to other children what she meant when she would grab them and pull them without saying anything they could understand. I know her intentions and I feel frustration for Savannah when she can’t articulate what she wants to communicate to other children. I have observed her immediately hugging a new friend or grabbing them and yelling in excitement. I find myself immediately interceding and explaining what she is trying to do or say while reassuring her new friend. Yes, a typical toddler will grab a toy from another child and not want to share, but they are able to use words along with their actions.
These moments are teachable, but it takes more energy and effort from us special need parents. These moments are important for all of us, but honestly, it can be hard emotionally. It hurts my heart to see Savannah not be able to use her words as easily as other children her age. However, Savannah doesn’t seem to be affected at this age. She doesn’t see differences. She sees other children and are naturally drawn to them. She is so happy to be playing and observing other children. I watched with a full heart as Savannah excitedly observed another sweet girl that was about 7 years old, rest her face on her hands against a pole and count as other children scattered about. Immediately, Savannah mimicked her and began to count as well (in her language). This tells me how important the role of other children are to not only to Savannah, but to all others. We all have a purpose, no matter our age. Just as adults need to find “their people” and surround ourselves with positive influences and those that challenge us to be our best, children need the same.
I have recently discovered an app called Speech Blubs that will help give Savannah just that! As we know, the attention of children is captured more by other children. This app has children speaking and singing as a way to teach speech and communication skills! How fun is that?! I am beginning to add this learning tool to Savannah’s daily routine. Any victory takes effort and energy. Any victory isn’t without challenges, frustrations, and emotion. Any victory takes a village. That village includes other children and the important role they have in the lives of their peers. It includes other parents taking opportunities to teach their children that differences are a good thing. We would never learn and grow without them! So, as I continue to learn from my children, I will “March to the beat of my own drum and love what makes me different with no concern of what others think”.
The Realness of Motherhood
If you have ever doubted that “mom brain” is real, I assure you it is! I don’t call my children by their correct names anymore! I call Ava “Ah-lec-Ava” most of the time because my tongue even combines their names!
The mundane tasks of picking up batteries as they roll across the floor from a remote that has been thrown from a three year old’s hands countless times, picking up a scattered pile of diaper wipes, then putting them in a ziplock bag because they’ve been pulled out of the original package, and cleaning poop off the floor RIGHT beside the potty while potty training, are just a few examples of what occurs in our home on any given week. Our role as “mom” can keep us quite busy! We don’t even go to the bathroom alone most of the time!
I am thankful for the honor of motherhood and all that comes with it. You see, there was a time I felt my body was “broken” and I had a sense of shame when one would ask, “You say you’ve been married 4 years?When are you going to have a child? Do you want children?” My response was, “Yes, I want to be a momma with all my heart! My husband and I have been trying to have a child for a year.” As time passed, the answer turned into “We have been trying 7 years”.
I even received responses like, “You know how you get pregnant, right?” I would respond with an uncomfortable and irritated curtesy laugh.
After years of trying to have my first child, going through 2 artificial insemenations, and taking fertility drugs, my husband at the time told me he didn’t want children. My spirit was crushed. It was like my breath and purpose had been ripped from me. My faith simply took over. I never argued about it. I simply prayed. After ten years of marriage and seven years of trying to get pregnant, I WAS pregnant with Alexis, my answer to prayer! God’s timing is always perfect and two years later, I gave birth to our sweet Ava!
I was a working mom of two, a serving wife, served in our church, and life was busy. As moms, we try to find balance in putting everyone’s needs before our own, while trying to listen to what our mind and body needs. For me, I didn’t find that balance until later in life and still try to find it often. My life was not my own for years. I was in a controlling marriage, making sure his every need was met as well as my daughters. After 20 years of marriage, we divorced. My life had become engrossed in motherhood and by allowing my husband to control me in every way, I didn’t even know what flavor ice cream I liked when we parted ways. (That is true!)
The one thing that kept me going after divorce was my two daughters. Motherhood was my life preserver. Thankfully, I have had my daughters 24/7 and was also taking care of my mother, who lived with us. I was working two jobs and all of my friends (except for one) no longer spoke to me on a regular basis. Yes, even church friends, whom I served with for several years, no longer kept in touch. However, God never left. He chases us and fights for us, even when we are so numb we don’t know how to talk to Him anymore. That one friend who remained faithful, reminded me that when we don’t know how or what to pray, The Holy Spirit is praying on our behalf. I am so thankful for that truth!
Motherhood leaves even the hardest working, dedicated, and loving mom feeling like she’s not doing enough and that she is not enough in general. When we lay our head down and the stillness of the night surrounds us, we second guess ourselves. Was I too hard on my child? Did I tell them how much I love them enough to where they really know? The truth is, our children won’t have a clue how much we love them until they become parents themselves.
I have often said, “No one understand a lady, like another lady.” We can breath so much life, understanding, and love into our fellow mothers by our words and attitude.
A year and a half ago, I had a miscarriage and lost my own momma within 24 hours of one another. Mourning my child and my mom at the same time was numbing. However, I couldn’t stop taking care of my three daughters. Motherhood, once again, became my life preserver and I had to keep going for my family.
Shortly after my miscarriage and after I was back at work, I had to crawl in the back seat of our travel car to grab something and my male coworker told me that’s probably why I miscarried. The disrespectful and insensitive remarks are things we endure as women and working mothers. There can be so many forces that come against us on top of what we tell ourselves. So why are we so critical and condemning of others?
God extends grace to us, so why is it so hard to Give ourself and others grace?
We have to remember that the ‘ol devil wants to deceive us and rob us of peace and joy.
Ephesians 6:12 says: “For we are not fighting against flesh-and-blood enemies, but against evil rulers and authorities of the unseen world, against mighty powers in this dark world, and against evil spirits in the heavenly places.”
There is indescribable love, intense emotions, and relentless humor involved with motherhood! The humorous stories, that become the ones told countless times throughout the years, also become the comic relief we need and make the tough days bearable.
One Christmas when Ava was 3 years old and Alexis was 5, I decided we would have this beautiful moment of making a ginger bread house, just like the Hallmark and Rice Krispie commercials tell us we can have.
Ava was sitting on top of the counter and Alexis was standing in a chair along side us as we began to assemble the gingerbread house. I could not find the gumdrops and asked where they were. Ava looked up and said, “right here”, as she continued to put the remaining gumdrops in her underpants!
There are comical events that could never be scripted and even leaves a mom not knowing whether to laugh or cry!
Ava called me the other day from school because she wasn’t feeling well. So, as not to embarrass her, I changed my chocolate milk stained T-shirt I had slept in the previous night before going to the school to get her. Then, as I am trying to get Savannah to the car, I hit the garage door opener. She quickly runs and grabs the basket of golf balls and pours them out as fast as lightning.
About 50 yellow nerf golf balls roll down our driveway into the street. Savannah is hysterically laughing. So, I just stand there watching a sea of yellow roll down our driveway. I know it’s funny but, at the time I was so tired and had a monthly visitor that had my organs feeling as if they were dragging the floor. Yes, mommas, you can relate! To add to the humor, a guy slowly drove by with his window down and witnessed the entire thing while hearing me yell “Saaaaavannnnnahhhhh!”
He circled back around, not to help but, to see the craziness! I put Savannah in her car seat and went on my own belated Easter egg hunt for yellow golf balls, while hearing Savannah laughing the entire time!
Whether you are a mother struggling through the mundane daily tasks, a lady longing to know the joy of motherhood and struggling with infertility, a mother trying to find balance between your needs and the needs of others, or one who doesn’t know whether to laugh or cry; remember you’re never alone. Cherish that one friend that has your back and is faithful when others leave. Surround yourself with positive influences and lean on The One who is always with you and will intercede on your behalf. Happiness is an emotion that comes and goes. However, you can have joy in the midst of any situation.... especially in the ‘The Realness of Motherhood’.
How May I Help You?
What am I doing to help another when chaos seems to be overwhelming a family member, a neighbor, and even a friend from IG whom I’ve never personally met?
How may I show love to them right where they are, as they are? So many want to talk negatively or judge another without uttering a single word to them personally.
An example of this is, in November 2017, our leaves on one side of our yard were in desperate need of mulching. Without personally reaching out to us and asking how our family was, we received an email from our Home Owners Association giving us a warning that we had until the end of the week to remove them. Little did they know, I had just lost my momma and miscarried within a day of one another and the leaves in our yard was the last thing on my mind!
With that being said, our first instinct may not be to ask how may we help. However, if we see the kindness of another, it may inspire us to do the same! So, when given another opportunity, we can chose to ask “how may I help you?” Then, as more opportunities arise and are acted upon, being kind and helpful can become instinctive!
Here are a few ways to show love instead of judging: “Motherhood can be crazy. May I bring you and your family dinner?” ; “I am doing yard work and am already dirty, may I help mow or pull weeds for you?” What if we became apart of encouragement, breathed love and life into someone instead of adding stress and heartache to another? Can you say “world changers” ?!? 🙌🏼
The way I see it, we are all really on the same team. Some team members may look different. Some team members may act different. However, we are a team. Oh, what a difference we can all be, with kindness, compassion, and love, especially during the most chaotic times in another’s life!
After telling my daughters before they leave for school in the mornings, “As long as you have breath, you have purpose! Make sure you see everyone in a given room, and do something kind today!”, my words have become a running joke in my home. With that being said, my husband, JR, will say, “You have purpose!” as one of the girls go into the school building, in attempt to embarrass them. The girls will randomly say to one another, “You have purpose!” as they giggle.
Little do they know the truth and life they are speaking into one another, even if it’s said to mock their ‘picked on’ momma!
The truth is everyone has a purpose! Many of you know JR is not only a retired Army Chief, but He is a ball player. He was in a tournament this weekend, so last night the girls and I drove up for his evening game. We sat right beside the dugout and I watched Savannah wave at everyone on deck!
She continuously yelled “da-dahhhh!” while waving her little hand with pride and excitement. At three years of age, this little girl has purpose! She waves at anyone passing her in any given place whether it’s a grocery store or ball field. She is one who sees everyone in a given room. She has a tender, kind spirit and sees others with a non discriminatory love. She is an encourager and sees everyone equally... except for daddy yesterday.... he was a step above the others!
Thank you Savannah for continuously revealing what my own purpose is and what it should be.
When We Meet Somone Who Is Different
After reading about an encounter my social media friend had last week, I was moved to share my heart in hopes to challenge us all to examine ourselves in a humble, intimate way.
My friend was in a library for story time. She noticed a lady staring at her youngest child, who happens to have DS, but that isn’t what bothered my friend. The lady quickly said to her, “she’s Downs, right?!” My friend’s response was, “Her name is Victoria and she has Down Syndrome.” I’m sharing this very common story with you to say this...
When we meet someone for the first time, remember they are not a skin color. They are not a diagnosis. They aren’t their mistakes. We are more ALIKE than different! Not only in this situation, but in others, many see those that are differently abled, those with a different colored skin, or anyone that is different in anyway....as inferior. It may not be something they feel is true about themselves and would never admit publicly, but that subconscious feeling of viewing anyone that is different as inferior ...is there. That is why many speak to others without using person first language. (Ex. “Down’s kid” instead of their name)
I say this, not condescendingly; but with insight, because I have been guilty of these types of subconscious feelings myself.
Advocating is key. While social media is fine and dandy, I believe many that don’t personally know anyone that are differently abled, see our posts and say to themselves, “Awe, that’s sweet” and keep scrolling.
Our real progress with advocacy is when we have moments like my friend did in the library, with a personal contact! When we are given a moment to make a change in any given day, seize that moment! Carpe Diem with love and kindness!
Henry Blackaby is a pastor and has a study guide called “Experiencing God”. In this book, he says God is always at work around us. He invites us to join Him and it is up to us to do so.
Moments are given to us to make a difference daily.
May we realize we have a mission field around us every single day.
We can make a difference, if we are willing do to do so with love.
What World Down Syndrome Day Means To Me
World Down Syndrome Day is March 21st. That day is symbolic because Down Syndrome is a 3rd copy of the 21st chromosome. This isn’t a day my family and I celebrate and honor the diagnosis itself. For us, March 21 is a day we celebrate the beautiful lives that are living with the diagnosis and the beautiful attributes Down Syndrome provides.
We celebrate the lives that are constantly defying odds and changing statistics daily! We celebrate how those living with Down Syndrome exhibits a non discriminatory love and gives hope to all who have the privilege of knowing them. We celebrate how it brings out the most beautiful aspects of our differences. We celebrate how worthy each life is.
We celebrate and cheer not only our own children and their accomplishments, but all children rockin’ an extra chromosome because we are a team.... a family.
You see, that is another beautiful provision of Down Syndrome. It forms bonds and creates a family that contains members from various cultures, backgrounds, and religions.
World Down Syndrome Day is a day we celebrate a huge part of what makes our youngest daughter, Savannah, who she is. Just like one person can make a huge ripple in the lives of so many, one extra chromosome can cause a huge ripple of love and enables us to see others through non discriminatory eyes. We learn that statistics and a diagnosis doesn’t define us. God never makes mistakes. He has a purpose for each of us. So, on World Down Syndrome Day and everyday, we celebrate that purpose, we celebrate the individuals, and we will continue to cheer one another along.... because after all, we are a team. We are family.
Wanna know something that will make you smile? This month we celebrate World Down Syndrome Day (March 21)! My mom didn’t know that before I was here. 😧
My mom didn’t know much about Down Syndrome either. Down Syndrome used to be something that she would look at with an expression of “awe”, but deep down was glad it wasn’t something that affected her.
That’s where God intervened and showed her that He makes no mistakes...ever. We are all
C💙L💛RFUL and unique! She learned to embrace differences in a personal way.... a way that wasn’t just accepting them from a far (with an “awe”), but in a way that was welcomed in her daily life. She truly started to embrace differences within her heart and it became a part of who she is today. 💜 Accepting differences in your head and accepting them in your heart are two different ball games. ❤️
One person can make a positive difference, just like I did! (I’m almost 3 years old and just getting started in making a positive change in the world around me!)
My mom and I want to assure you that there is nothing to fear when it comes to Down Syndrome! It’s just an extra chromosome that allows extra love to fill all who know us.
We are all C💚L🧡LFUL, unique, and full of purpose. Whether a skin color, limb difference, a wheelchair, braces, speech impairment, hearing loss, battles fought within, or an extra chromosome is what makes us different; we are all made in the image of God. We should be INCLUDED, LOVED, and ACCEPTED as we are, not based on how similar we are to another! We do better when we know better. That is why my mom writes and posts about the beauty of being unique, about acceptance, love, and how we can be a positive light in the midst of one’s darkness. She wants to share something so amazing with you, something so full of love and hope, that it changes you for the better... just like it did for her.
Here is a way you can spread Down Syndrome awareness and celebrate how unique and colorful we all are:
Wear colorful socks or mismatched socks on March 21 (World Down Syndrome Day)! It may strike up a conversation with someone that you can share something positively amazing with, too!
Social Media Can Feel Like A Popularity Contest
Social media can feel like a popularity contest at times. Who’s with me?🙋🏼♀️ Something that came to my mind this morning is that we are not to seek the praise of man. No matter how “cool” we think our IG page is, no matter how encouraging we try to be, no matter how drama free our posts are, and no matter how cute our kids are... we aren’t going to please everyone, everyone isn’t going to like us, and there will always be people that will critique you.
So, this is for adults and children that are feeling they are getting caught up in the trap of social media. The subliminal pressures of sharing our lives and even advocating, can take time away from those around us in “real life”. Even adults can fall into the trap of a competitive spirit and care too much what others think. We can have thoughts like, “why does this person have that many followers and I don’t?” I want to remind whomever this is for, that YOU ARE JUST AS IMPORTANT AS THE NEXT PERSON! You have purpose, you are an influencer, and you matter. The amount of followers on IG or other social media sites isn’t indicative of what is truly important. Look around you... your family.... your people.... the ones that will be there when your car breaks down, the ones that are there when a loved one passes, the ones that won’t leave when trying times come, and those little eyes that look up to you on the daily.... THEY ARE THE ONES THAT MATTER AND DESERVE YOUR TIME.
We can also easily spend too much time on this little thing called social media, even while trying to encourage another, advocating, or being a positive light.
What also came to my mind this morning is there may be a reason some may not have a big audience. One reason is that God may be protecting you from trolls and predators. We may also unintentionally become self consumed and post things for personal attention. Balance and Intent are the key words for this dilemma.
Let’s look up, put our devices away, love those around you, write love notes to your family, and personally laugh with someone today! Maybe even go to a ballgame and spend time with someone that matters to you!
Carpe Diem with balance, intent, and love!
Can you IMAGINE being labeled and placed in a group by someone that deems your life not as worthy or purposeful as another?
For just a few seconds, IMAGINE hearing others having to go before our government to try to convince them that your life matters and is worthy of a chance. IMAGINE that a medical “specialist” tried to convince your mother that you were not worth a chance in life and attempted to get her to abort you.
IMAGINE being told that because of your differences, you will be sent to a mental institution living with other adult patients, but you are just a scared, hopeless child.
IMAGINE that you will never have a chance to succeed in school, laugh or squeal with excitement as you ride a ride at an amusement park, or feel the warmth and security of a loving home because you are living in an institution or nursing home.
IMAGINE not being included in a mainstream school or invited to parties because others have not realized we are more alike than different.
These scenarios are the reality of many precious lives.
Some lives have to endure what we only can IMAGINE, because of ignorance. Ignorance promotes fear and fear promotes discrimination. .
We are all different in some way. Instead of being afraid of “different”, why not learn from those differences? Why do we study different subjects in college? To be educated, expand our knowledge, and have greater opportunities! May we allow our differences to educate us and help eliminate fear, while giving to others what they have always deserved...opportunities and a chance at life that is truly worth imagining!
I write about life and family. My heart's desire is to educate as I am being educated, while inspiring and encouraging others through the beauty of Down Syndrome.