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African Americans and Down Syndrome: A Grandmother’s Journal: “Watching Him Shine” (Part 2)

Of all the things a mother wishes for her grown daughter–a healthy, thriving child is certainly one of them.  But when Tia Johnson of New Jersey, learned that her daughter was pregnant with a baby boy who tested positive for Down Syndrome, she experienced a whole suite of emotions. She shares the gripping details of them here, in an effort to increase awareness and erase the stigma of Down Syndrome in the black community and among all children. In her words, the name of her grandson Chao, born in December 2013,  stands for “Children Have Amazing Opportunities”…. Indeed.

ARIA’s PREGNANCY

 What great news!  I was so elated to find out that my daughter was pregnant again (Read Aria’s personal story in Part 1 here).  Shortly after, I recalled a conversation my daughter had with me.  At the time, I kind of brushed off her expression, “I am going to really need your assistance.” This statement made me a little anxious, only due to the fact that it was a given, and why was she continually saying that!  My reply back to my daughter was, of course, I have no problem with that.   I could not even fathom why she would say that to me.   I imagined that perhaps she was having twins, since she is the daughter of twins.  However, my belief is, as long as we have spiritual and the physical, we are good.  I was made aware a few days later why she was making that statement!    You see, Aria was paving the way to tell me that something more serious was involved.  Finally, she told me about the chorionic villi sampling (CVS ) testing she had undergone and the markers that were found, that are associated with embryos with Down Syndrome (DS).   My thoughts were so mixed. Perhaps they could be wrong, and the research followed immediately!  However, I knew that despite my mixed emotions, I would have to be incredibly supportive of her and my unborn grandchild.

At this point in her pregnancy, Ria did not know the sex of the baby.  She wanted this to be a surprise.  I was so hoping for a girl, oh yes!  And, although she loves her son immensely, I think that she was hoping for a girl this time as well.  Up until now, it had never crossed our minds that there was another plan in the works.  My son-in-law knew the sex of the child but it was important that Ria did not know, as she wanted to be surprised.  That was short lived, as one day Ria was reading the results of a test, the sex of the embryo was in the document.  She was upset, because she wanted to be a surprise, but now she knew.  The baby was a boy!

RESEARCH

The love of research has always been my strength.  I absolutely love to research things; I will even do research on my research, so I immediately got busy and googled everything there was to know about down syndrome.  I joined many support groups such as Noah’s Dad and GiGi’s House in New Jersey and also took to Facebook and Twitter, mailing lists, message boards and the like throughout the NJ and New York area as well as abroad.  Knowledge is power, and I was on a mission.  What is so encouraging is that there is an abundant supply of information and resources out there today.

MIXED EMOTIONS

Grief, Fear, Worry and Joy

In the beginning, are the doctors right?  Could the test be wrong?  (Dare I think or say) Were there any out there that had the test done and found out that it was not the case and the baby born was without DS?  What I found out was this test was highly reliable. What about an alternative?  Were there any holistic medicines out there that could aid in helping the child so that other health issues would not happen?  We knew of heart issues, and the digestive risks.  There was never any talk of terminating the pregnancy.  However, my daughter was increasingly disappointed in the personnel who took the scans and always remind her “You know that your child is DS right!”  She would be so disappointed in their distant and cold manner.  There is much need for improvement in that area.  I was so happy that Ria found the perfect OBGYN for the delivery of her child.  The doctor was awesome and she liked her upon first meeting.

I believe that Chao was teaching me before he was even born.  I could feel it in my gut and confusion would set it.  I would become irritated with myself.  I knew that there was going to be a lot of room for growth.  It is hard to say as a parent what you feel when you are told that your grandchild has some health issues.  I shared some thoughts with my husband and a friend and decided that knowledge was power.  What was I feeling?  Who am I?  How can I be supportive of my daughter?  How would this change me and what would this little one teach me?  I love children and I am a teacher with the young ones.  I have children from birth to 6 years of age in my care and home school setting.  I have had the pleasure of preparing the very young from birth to 5 for kindergarten.   How was I going to prepare myself to assist my daughter with Chao.  So, how and what am I to feel.  I know that I do love my grandchild, and I recall my daughter saying to me “Do grandparents have a favorite?”.  I do not know what to make of this comment, as I replied back to her “tongue in cheek”…I do not know yet?

EMOTIONS

Grief

I have to admit that there was grief after my daughter initially gave me the news of what was to be, but this grief was fleeting, as it gave me the opportunity to dig and research, and renewed inner strength start to reside within.  Great to say Grief was short lived.

Fear

Fear was also so fleeting, however, I did think of my grandson and how he would make out in this world and also how his little brother would be able to help him and what a advantage that they both could learn from one another. You have the same concerns that you may have for any other child.  You worry about school, friendships, health, etc.    There are so many great mothers and fathers out there for children with disabilities, and, it is a joy to know that my daughter is one of those fantastic mothers.

Anger

 We are aware that there will be some trials, even from well intended close family and friends.  However, with my strong beliefs, I pray for continual strength and guidance that can override ignorance and there is where need for prayer will always have to be on ones lips.  One of my favorite quotes: “Life is 10% what happens to you and 90% how you react to it”. – Charles R. Swindoll.  May my responses be wise ones as a servant of the Almighty God.

Epiphany –

I spoke with a friend about my grandson’s markers for DS and she confided in me some things that she as a grandparent were dealing with also.  Indeed, I was sad to hear that she was dealing with some health issues with her grandchild as well other issues.  I asked her if she would keep it private as not many people knew about my grandchild, only a selected close friends and family knew.  And, she stated to me that “was it that I may not be ready to come to term with things?”  With this question my thought pattern and I became confused, as I would hope that I am not ashamed of my dear grandson, but viewed it as being private, which I am so very private.

This statement still troubled me enough to call my daughter and inquire if she thought that I could be feeling that way, and her reply to me was reassuring – “you are who you are, and that is private.”  However, it did cause me to do some self-reflecting on how I feel about my grandchild.  I love my little guy and if there was any embarrassment it would truly not be a trait that I would want for others to think of me, and I have to realize as I still question.  Was I in a state of denial?  Why did I only want a select amount of persons to know?  I figure that person would see eventually and that would just be that, however, it would hurt me to think otherwise of myself, and that is what that question led me to do a self-evaluation on my mind, thoughts and action.  I am one that has to be straight up with others as well as myself.  Look into yourself and see what is there for real.

Baby Chao and his big brother, Chance.

SUPPORT GROUPS

Ria inquired and registered the family to visit Gigi’s Playhouse, a support group in New York City for Down syndrome children and their families.  On September 16th, off we went to visit Gigi’s Playhouse.  It was fantastic and so informative, with many exercises that incorporated stress relief exercises for the mother as well as the children.   The best thing about this visit was we all went as a family, including little my little grandson Chance who was able to play with many of the children in the play area(s).  I recall that my son-in-law was more relaxed and asking many questions. Although he is very supportive, he wears his heart on his sleeves and things truly get to him.  At Gigi’s Playhouse the mothers there all already had children with Down syndrome.  We were the only family there who was expecting.  One mother that I had a deep conversation with did not know that there were test(s) that revealed if your child had markers for DS.  So, I believe that my daughter brought a lot to Gigi’s as they saw a mother in waiting preparing and researching how to be the best mother there is for a child with DS.

A very supportive and close friend of mine was quite positive in her expressions and stated “Tina do not worry about it, Chao will be loved, you and Ria appear to have a handle on things and it appears that you are already doing everything that is necessary!  Just keep it up because there are so many avenues out there for Chao today!

 

BIRTHS & DELIVERIES

Chao is here…and he is beautiful! 

Aria went into labor early morning on December 31. She was a tad agitated, as she was driving her vehicle and hubby was following close behind from upstate New York to my home in New Jersey.  When she finally dropped off my grandson in early am she sped off with her vehicle trunk opened.  It was kind of funny to see my Garfield, my  son in law jump in his car and follow in pursuit to warn her.  I knew she had to be in labor right at that moment.

I received a phone call Garfield informing me that she was now in the hospital and that she was 4 cm in dilated.  He did sound kind of nervous and informed me that he would keep me informed.  Later on that afternoon we found out that she had given birth to a beautiful little boy named Chao.  He was 7lbs. 1 oz., and although he was small – he looked so big to me.

ARIA & TIFFANY DELIVERS!

While visiting with Ria in the hospital on 12/31/13,   I heard Ria’s lively and spirited laughter when she took a call from a relative informing her that her first cousin Tiffany, who is like a sister had to detour while in route to visit Ria at the hospital.  Tiffany went into labor and delivered a baby girl.    Little Gia was born on January 1, 2014.

Ria and Tiffany always laugh about whether they would have the babies on the same day, So, little Chao was born on 12/31/13 and little Gia was born on 1/1/2014.   So cute, as I flashed on the news report of twins born 2013 and one on 2014.

 

 

 

SUPPORTIVE PHYSICIANS

I have to say that I am so appreciative of the Physicians and nurses at Englewood hospital, they were so positive and uplifting; one physician sent out for extra tests to confirm that Chao was DS because he did not have the classic look. It was like they were still holding out hope for the parents.  As Ria so eloquently put it, they were being kind.  It was apparent that they admired Ria and Garfield, and wanted so much for the outcome to be different.  I suspect they saw her strength and truly admired it!  This is the way that it should be.  We were waiting to hear from the test(s) taking in the hospital if the baby was Down syndrome, and we knew that it was what it was.  And, truly was ok with that!  We were praying for Chao surgery and that it would be successful and healthy outcome.

STRENGTH, FAITH AND CHALLENGES

SURGERY FOR LITTLE CHAO

We were well aware during Ria’s pregnancy that right after birth little Chao would require surgery as he was not receiving all the proper nutrients from his mom during gestation.   So there were some additional hurdles to go through on January 2nd, the day of Chao’s surgery. My daughter called me around 3:05pm to tell me that he is going in for procedure.  I am praying that everything works out fine for the little guy.  He is going through so much at this young age.  All the worries about this and that seems to be prioritized as you are praying that he is fine and that everything works out alright for him.  We are in the middle of a snow storm and my daughter is staying at the hospital tonight to be there for her son.  As I wonder how my grand child will fair in this system of things.

Suddenly, everything starts shifting and as I prayerfully relied on Almighty God, many doubts and wonders disappear for awhile and I could think.  Chao had the surgery to correct the issue with his abdomen, and this was a long 3 hour surgery – very delicate but successful, although he was not out of the woods yet, they had to keep him on intravenously and tubes were everywhere.  Now we just had to wait to see.  Chao did quite well in surgery and we are so very thankful and grateful that things did turn out well.  Psalm 55:22.    After surgery Chao was hooked up to many little gadgets and tubes, one for breathing and the other tube going through his mouth and an IV for nourishment.  And, although he had so many hookups he still looked amazingly healthy, but there were many prayers still for little Chao to pull through so that he would be able to have intake of food soon. A few days later the tube was taken out of his mouth and placed a pacifier in.  He looked like he was so famished.  And, soon he could take in some breast milk.   Thankfully everything went fine.  And, 14 days after his birth – Chao is ready to go home.

 

WELCOME HOME MY SPIRITUAL & FLESHLY BROTHER

 Chance for Chao!  What a beautiful buddle of joy!  Little Chao being held by his big brother Chance at home and he is so proud of his little brother.  It is evident that he is going to be very helpful to mommy and daddy with the care of this little guy.

So this is where a lot of my faith came in and something that I am so ever grateful for, relying on prayer to Almighty God even when feeling defeated, helped me tremendously.  There is so much to learn here.   I am new to this and know that I will make many mistakes, but I just want to be able to receive and learn from what this precious little bundle is going to teach us.

 

PERSPECTIVE

Chance for Chao!

 Chance is already in the role of being a supportive brother to Chao, who will teach him many good things.  He is already looking out for him and making sure that no one annoys him.  It is touching to see how he interacted with Chao, even before his birth, he knew his brother’s name and would recognize him as Chao as he tenderly caress his mother’s tummy.  And now to observe him interact and he listens out for him and tenderly caresses and kisses him.  These expressions are so endearing to watch and are contagious to other little ones looking on as they mimic these feelings of love for infants.

I have learned a lot from the children in my home school setting.  If you listen, they will show you many things.  We all live very busy lives and are constantly bombarded with the all the technology and weapons of mass distractions, and we become weighed down with various trials and tribulations that bombarded us daily, the stresses of daily living, employment, finances and losses.   However, nothing is more important than the health and happiness of yourself and family.  If you have an ongoing relationship with the Almighty God this will pull you through the hard times.  It is imperative to form a good strong relationship with ones that you can confide in and will offer up words of encouragement to draw on in times of trouble.  My desire is to encourage and support Ria as much as possible.  She is a strong young lady that I am proud to call my daughter.

Last but not least!  JOY

JOY

For the most part, all of the emotions above were short in duration, after holding Chao for the first time, sparks flew and I was in love again!  This week we were bombarded with snow in the northeast region of the U.S. and my daughter came to visit so that I may assist her with the children, as she lives farther north, and hubby works some pretty grueling hours, well, it is early 5:00 am and I have my little munchkin on my lap, he is a little over 1 month in age, and already has quite a personality.   Actually it is quite medicinal for me in my writings.  The words seem to flow as he is resting on my lap!  I am grateful to that we had months to prepare for Chao and although much anticipation it is a wonderful growing experience.

In my humble opinion, Chao does not have a disability; he is like any other child and they all have amazing opportunities and challenges, and can excel. We are all born with potential, and I believe that with the proper love and guidance we can strive and be shine in mind and body.

Yes, there is much ignorance and misconceptions about down syndrome children, and I hope to enlighten a few in my endeavors.  Already it is a growing and wonderful learning experience for me, as it causes one to reflect and do some soul searching to see what your thought patterns are in today’s society.  My thought pattern has been adjusted greatly, and I have owned it and embrace it, as I look at my reflection and frankly am enjoying the new me.  “Ignorance is NOT so blissful!”  I now have the need to make a conscientious effort to widen out more and give things a new thought and ponder carefully over my ways and thought patterns.  We are all basically mixed up and confused in this system of things, and if it were not for my knowledge and belief that gives has afforded to draw close to the God of this vast Universe, who allows ones to draw close to him, the situation would definitely be a entirely different.

So grateful to be a grandmother of two beautiful little boys! My Cha-Cha’s.   I did not understand how so many parents could say that you are going to have the best time with this little one, as they have all seem to just be delusional or making it up, but my little guy has not even begun on his journey and I am feeling it now.   - . Psalm 55:22

I thank our Jehovah God for his care and love in all that we endeavor to do!

Send comments!

ChanceForChao@gmail.com

www.branaria.com

 DEAR FRIENDS & PARENTS:

 It is my pleasure to present my little journal

CHAO “Children Have Amazing Opportunities”

I wrote this story for sharing my emotions and love for my family and friends.

Aria

A little humor

At first you were scary to me about becoming a Mother!

But I was proven wrong! You do know what you are doing!!!

Special thanks to:

Jennifer Tse

Brenda Cooper

Kelly Belizaire

And so many countless others!

Thank you for your interest and Support!

True joy is a quality of the heart and can affect the whole body for good. “A joyful heart has a good effect on the countenance,” and “a heart that is joyful does good as a curer [or, “does good to the body”],” says the wise writer of Proverbs.—Pr 15:13; 17:22,

Copyright @2014By Tia Johnson


 

Comments
One Response to “African Americans and Down Syndrome: A Grandmother’s Journal: “Watching Him Shine” (Part 2)”
  1. Stacey farrar says:

    This journal was so very empowering! It touched my soul deeply. Ria since I’ve had the pleasure of knowing her been
    A very strong person, although I’m older then her
    I’ve been able to pull so much strength from her
    Knowledge is Key and God grants every the opportunity to embark
    On it. Ria didn’t hesitate to get educate on what was to come!!
    Thank so much for sharing the knowledge and resources you and the family took
    Your story will definitely help someone as it did me
    Stacey

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