"DON'T KILL HER!!!!!"

    I asked my sister Eva (aka one of my many angels along the way) to recall a phone conversation between us during one of the darkest moments of my grief. This was in July 2010 I was pregnant with my second child and had received a prenatal diagnosis of Down syndrome. But there was more....it was Translocation Down syndrome and the labs results showed that I too had a chromosome abnormality. I was born with Robertsonian Translocation what this meant was that every time I became pregnant there was one of four outcomes 1) a typical "healthy" baby 2) a baby with Robertsonian translocation like me 3) a baby with Trisomy 15 { not compatible with life or early miscarriage}  and lastly 4) a baby with Trisomy 21  also known as Down syndrome. In my mind it was like playing a sick game of Russian Roulette every time I got pregnant. This extra bit of information threw me into a deeper  depression I was on a wild roller coaster from hell! I was in a dark  hole I couldn't come out of, crying very minute of the day and night. I was soooo angry at myself, I felt guilty that "I did this" to the baby. It was my fault! I truly felt I was to blame for my baby having Down syndrome because if I had not been born "defective" then she would be healthy! I felt I needed to make things right I needed to protect her from this cruel world. I just wanted to send her back to God  :( 

Here is my sister's recollection of this painful moment for both of us.

Hey Sis,

    I remember that it was a very hot summer day in 2010 (Adriana is my sister's wife and my wonderful sister in law) Adriana and I were out at a friends house when I heard my cell phone ring, I picked up my phone and saw your name. I looked up at Adriana and told her it was you I then stepped away from the group so I could talk to you in private. I had this feeling about what you were calling me about. I answered my phone, you were sobbing hysterically you then told me that "You couldn't bare to cause any pain to your baby girl." this was not the life you wanted for her and that you were to blame for this so that best thing for her was to be with God. You were going "to terminate the pregnancy." I then asked you "Are you sure you will be able to live with that decision?" and you answered "Yes."  

     In my mind I was screaming "NO!!!!! Don't do it!! Please don't do it!!!! DON'T KILL HER!!" but I didn't say a word to you, I knew that I had to be a good sister and support your decision. So instead I told you that I would support you no matter what. You said  "It was the best thing for your baby girl and for all of us in the family" we ended our phone conversation. When I put the phone down I broke down into tears the pain was so deep Adriana asked me "What's wrong?" I told my wife what you had just said to me over the phone and her eyes got teary. I really didn't know if I had done the right thing because I did NOT agree with you.

    I thought to myself  "Who am I to tell you that you need to have this baby girl because I needed you to!!! I wanted to meet her, I want to see her grow, I want to see what she would become." How could I ask you to continue on the roller-coaster from hell because that is what it was like up, down, up, down and up not everyday but hour on the hour. It would kill me to see you in pain, crying and not be able to do anything for you. But in the same token I was selfish I could NOT picture our lives without your baby girl in them. I always felt that Aliyah was going to change us for the better, that she would take the pain away from our family. I told Adriana "If Chelo doesn't want her I do! Would you help me raise her?"  she said "Yes! Aliyah is a Angel God was sending to us and she needed to be born."

    So I called you back I didn't know the right way to say it to you, I didn't want to hurt you, but when I opened my mouth the first words that came out were  ''Please don't Kill her!! If you don't want her ? We do! Give her to me," We both were crying I went on to tell you that I knew I was being selfish but I had to tell you what I felt in my heart. Maybe it was my raw honesty but I think you started to realize what you were planing to do. We ended our conversation once more. I was a mess so I asked Adriana if we could go home she agreed it was the best thing to do. Instead of going home I rushed to your side you had been crying and we hugged you told me you were so sorry for being weak and that you had changed your mind you were gonna continue with the pregnancy. I felt a relief in my heart like no other. 

Hello again Ms. K... and nice to meet ya Ms. H.....

The results were in....Did our unborn baby have Translocation Down syndrome by chance? Or did my husband or I carry a chromosome abnormality?

    My husband Ricky and I walked into Ms. K's office (Ms. K was one of my many angels along the way and also happened to be our genetic counselor) she was always so kind every time we met and we will never forget that. We sat down to discuss the results of the tests on our genes, she showed us the paperwork again it was two pages one contained pictures of my chromosomes and the other of my husband's. I looked at them instantly I noticed I was missing one of my 21st chromosomes??? I knew exactly what this meant... It was not by chance that my baby had Down syndrome it was because of ME! I was the defective one! I made my baby have Down syndrome!!! : (     This additional information was so hard to take in it also meant that for future pregnancies I was at a high risk of having more children with Down syndrome or horrible Trisomy15 that was not compatible with life or a balance carrier like myself. "I couldn't even make a baby right!" I said to myself.  I was a worthless woman, I felt so sorry for my husband how did he get stuck with me? I thought.

    What about our daughter Maricela?? We knew she was born with no outside visible problems but she was NOT out of the woods yet! We learned she had a 50/50 chance of being a balanced carrier like myself
 :(  more pain!!! At this point Ricky refused to sign consent to have Maricela's genes tested. I was in no position to sign ANYTHING. We ended our meeting.

NOTE: This same afternoon I had previously set up my first meeting with a Parent Mentor at our local Down syndrome support group the DSIA http://downsyndromeinfo.org/

    I held in the tears I was not gonna breakdown in front of Maricela again this is one thing I refused to do. I told Ricky I still wanted to keep our meeting with the Parent Mentor. We arrived to the park where the meeting/playdate was to take place. I was so nervous to meet this Parent and more so her daughter born with Ds who I had requested she bring to the meeting. I needed to see a child with Down syndrome face to face. As we walked up to the playground my eyes were dashing side to side trying to find this woman and her kids. My eyes stopped instantly when I saw little G (the Parent Mentor's little girl, 9 years old at the time) She was spinning around with her sister L on a merry go round they were all smiles no suffering was going on....I though to myself. Then I saw H the Parent Mentor walking up with her youngest in her arms she shattered any old stereotypes I had left in my brain, a young mother of three beautiful girls.... she was just a typical mommy. Although I had just received some life changing news the sight of this family was conforting to me.

   H introduced herself and had her little one's say hello to us, I remember I was trying my hardest not to stare at G but I think she was on to me. When it was her turn to say hello to us she stayed looking down and said very quietly under her breathe said "hi" H must have not heard G say a word because she then told G "G say hello honey." G then sighed like a little total diva and said "I already diiiid mom." with a slight eye roll. LOL this was so funny to me she was a very typical girl. I admired her little feistiness and spunk. After the introductions our girls ran off to play.

    I then sat down with H and proceeded to bombard this poor lady with a million questions about the parenting portion of raising a child w/ Ds. This was very helpful as I couldn't find these types of answers online. She was able to answer all of my questions which was great I now had some answers that I so desperately needed in that very difficult time. Now it was time to go the kids were getting hungry as we were saying our goodbyes G ran up to H and jumped up to hug her they kissed and toughed noses it was the sweetest sight ever! H then asked G what she wanted for dinner she promptly replied "hot dog's and french fries." Wow how "normal" I thought to myself she's just a regular kid with typical kid taste's in food. We finished our goodbyes and left the park, in the car ride home I was able fantasize about my baby girl's future what she might be like...Would she be that high functioning? Would she be able to walk and run and speak and express herself like little G??

 

Truth or Myth??

Taken from NDSS.ORG

Myth: Down syndrome is a rare genetic disorder.

Truth: Down syndrome is the most commonly occurring genetic condition. One in every 691 babies in the United States is born with Down syndrome, approximately 6,000 births per year. Today, there are more than 400,000 people living with Down syndrome living in the United States.

Myth: People with Down syndrome have a short life span.

Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.

Truth: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome have severe cognitive delays.

Truth: Most people with Down syndrome have cognitive delays that are mild to moderate. Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.

Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.

Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome. 

Myth: Children with Down syndrome must be placed in segregated special education programs.

Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.

Truth: Businesses are seeking adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry to name a few.

Myth: People with Down syndrome are always happy.

Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.

Truth: People with Down syndrome have meaningful friendships, date, socialize, form ongoing relationships and marry.

Myth: Down syndrome can never be cured.

Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

Smile now Cry later

    It was the morning of my oldest daughter Maricela's preschool graduation ceremony June 12, 2010 everyone in the house was crushed by the news of the day before but they all put on the fake smiles and rushed to the park where the graduation was taking place. I myself didn't think I could stand to not cry for the 4 to 5 hours we would be at the park, but for my oldest daughter's sake I too put on a fake smile, LOTS of makeup and huge sunglasses that I would not dear remove for any reason. When we all arrived the graduation ceremony had just started I had to greet all of the other parents which I was very close to, we were all like a little family. They all admired my growing belly on the outside I excepted the compliments with a bright smile on my face but inside my head I had very different response for these compliments "Would you be so happy for me if you knew my baby had a birth defect."

    The ceremony was supposed to bring me joy but instead all I could feel was pain. It pained me to watch all the little kids one by one tell us what they wanted to be when they grew up. All I could think of was the baby in my womb, my baby girl who I now knew had Down syndrome would she one day do the same as them? Would my baby ever graduate? Would my baby have hopes and dreams like all these other kids?

Through the tears constantly rolling down my cheeks I watched my oldest child "graduate."
I was so proud of my daughter and so happy for her accomplishment but at the very same time I felt completely heart broken inside for my unborn child.

Mari and her buddy Brooklyn and behind Zoey
and if you look above you can see me with my bump

Part 2 "I'm sorry she does have it"..So what do we do now?

    My husband and I had just received "the news" we were going to have a baby girl. A baby with an extra 21st chromosome, a baby girl with Down syndrome. Later that same day we met up with our genetic counselor Ms. K at her office, she needed to discuss the diagnosis and our "options". When we walked into her office she expressed concern for us because we must have looked like two crazy people sitting there with blank stares on our faces.

    Before I go into all this genetics 101 stuff that can be so confusing.....I would first like to quickly share a few facts about Down syndrome.

    The following is from a book called "We'll paint the Octopus Red" written by Stephanie Stuve-Bodeen.  

(( In the typical population babies are born with 23 pairs of chromosomes so a total of 46. One set is from the Mother's egg and one set from the Father's sperm. Babies born with Down syndrome have one extra chromosome number 21 in some or all of their cells. Chromosomes are tiny thread shaped things inside your body. They contain the directions that tell your body how to grow. These directions tell your body what color your eyes and hair will be, how big your nose will be, whether you will be a good singer, and many other things. When a baby is born with an extra chromosome number 21 it mixes up his body's directions a little. This is why babies with Down syndrome may look a little different from typical babies and may need to try harder to learn new things.)) To learn more please visit  http://www.ndss.org/en/About-Down-Syndrome/Down-Syndrome-Fact-Sheet/ 

    Back to the genetics counselor's office visit.....Ms. K was very kind and compassionate as she educated us about our baby's genetic condition. She even told us that our baby would do everything other children could do just at her own pace. Then she handed us the Amniocentesis lab results, this paperwork showed pictures of our baby's chromosomes all lined up in sequence neatly. I saw the numbers and was totally confused our baby had 46 chromosomes the typical amount?? Ms. K further explained that our baby did in fact have 23 pairs technically but if we looked closer there was a little tail end of a extra 21st chromosome attached to our baby's 15 chromosome, Therefore she had part of an extra 21 chromosome this is known as Translocation Down syndrome. ( please note: its still the same as typical Down syndrome.)

    What did this mean?? Was our baby going to have "less" Down syndrome?? My husband and I were thinking to ourselves, we had no clue so Ms. K had to explain that it was the same as old fashion Ds the only difference was how the the extra chromosome got there. Ms. K told us that the Translocation could have happened by chance or that in some rare cases it meant that one of  parents was a balanced carrier of a chromosome abnormality. Talk about crushed not only did our baby have Ds but now it was the fault of one of us. My husband and I signed the papers to have the test to confirm or rule out the possible balanced carrier issue. Now it was time to talk about our "options" we were told we could do one of three things abortion, put baby up for adoption or just proceed with the pregnancy. I then asked Ms. K "How did they do the Abortion?" she told us the procedure would be in a hospital setting that they would inject the baby's heart with something to stop it from beating so she would not feel any pain. Then the Dr. would deliver the baby and that I would not be able to see her. I asked if there was any way we could have our baby's remains and give her a proper burial. Ms. K said she would get approval for that and get back to us on that. She then told us that there was always Adoption that there was a waiting list of people waiting to adopt a baby with Ds here in the states.

    After listening to all that information my husband Ricky with red teary eyes looked at me and said  "No! No! Yes. We were going to have this baby no matter what!"  I just sat there silent but in my head I was screaming "Hey wait! What about me? I can't do this! I don't want this!" but I kept that to myself. On our way out of office I spoke to Ms. K while my husband was in the restroom. I asked her "Who do I need to call if I didn't want to continue my pregnancy??" she said "You can call me, I will handle the details" she then handed me a card looked me in the eye and said "If that's what you want to do it would be best that we set it up as soon as possible because it would only be harder for you." The car ride home was silent. 

    That evening my husband and I didn't really speak, I called my mother so I could tell her the bad news. After hours of crying my eyes out in my mother's arms, I confessed to her that I couldn't bare the thought of seeing my baby suffer and that I wanted to have the abortion. She tearfully told me she would support whatever I decided but I could see and hear in her voice she was in pain too. 

    Later that night I couldn't get to sleep the pain was so deep it was hard to breathe. I loved my baby girl with all my heart but all I could see in my mind was outdated stereotypes of how horrible her life would be because she was developmentally disabled. I wanted to send her back to God where she would NEVER suffer any pain or ridicule and be protected forever. In my mother's heart I was willing to suffer the immense grief of loosing my baby so that she would not suffer here on earth. In the middle of the night I finally decided I needed to be honest with my husband and I woke him up to talk. In tears I told him I couldn't do it, I couldn't stand the pain of seeing my child disabled and suffering in this cruel world and I wanted to have the abortion. He then held me close and said that he didn't think he could agree to do that, he said that she (our unborn baby) would forever haunt him in his dreams and ask him "Daddy why wasn't I good enough? 

    I went into the guest bedroom to cry in my mother arms some more, we cried and talked for about 2 hours. I told her that Ricky couldn't agree to the abortion so I was second guessing myself. She was trying to support me but I could tell she was hoping I would agree with my husband. As we talked I started to realize I was not strong enough to move forward with the abortion without my husbands approval his resistance made me realize what exactly I was planning to do, which was to kill our baby girl not protect her. This realization hit me hard I was not capable of doing such a thing but my brain wanted me to and my heart would not let me. As we spoke my mother encouraged me to see the situation in different way she told me there will be pain in both decisions but only one decision had any sort of joy. Life. 

Part 1 "I'm sorry, she does have it"

    I had been anxiously awaiting the results of my Amniocentesis all week. In a sheer terror I was in denial, I asked myself a million times, "how could my baby have Down syndrome? I'm only 28 years old!! No not me!" On June 11, 2010 I cheerfully answered my cell phone, all I could feel was complete relief as it was my genetic counselor on the other end and she was calling me to give me the news I was waiting for. You know... that my Amnio results showed my baby girl was "healthy" and the screening results were just a false positive that's all. Well that's what I dreamed would happen.
 
   Instead my genetic counselor who I will call Ms. K said "Chelo, is Ricky home with you?" Me>>"No, he's at work" Ms. K >>"I would prefer you were not alone" Me>> Please just tell me" Ms. K >>"The test results are in.....it's not what we were hoping for. I'm sorry, she does have it." Me>> "Oh....ok thank you" Ms. K "Chelo are you ok?" Me>> "ya" after that exchange Ms. K asked if my husband and I could come in to see her that afternoon because she had more info to discuss with us? I agreed we would meet her at her office later that day. Click, I hung up.
 
    What followed was a complete breakdown. I had just learned my baby girl had Down syndrome. All I could do was cry and scream "No! No! No! She's not right! My baby is not right! My poor baby!!!!!!!Why??? Why!!!!" My cries got the attention of my brother in law who at the time was in his early 20's and was staying with our family for a few days. He was sooo confused as we didn't tell him about the testing or even our other siblings, my husband and I only shared this information with our parents. We never expected to have the test show anything was "wrong". My BIL called my husband at work and told him to get home NOW! as per his wife. When my husband Ricky got home I just lost it all over again the pain in his eyes was so hard to face, he was putting on a brave face but his eyes said otherwise. We sent our then 4 year old daughter with my brother to get her out of the house, she was so frightened from all the commotion.

    My husband and I just cried and held each other close.... What were we gonna do?? We had to meet Ms. K to discuss some more information she had for us later that same day.

WELCOME Please start here "She's gonna stay small forever"

    In late 2009 my husband Ricky and I had been happily married for 5 years and already had one beautiful daughter we named Maricela. Our first born was about to turn 4 years of age and after much thought and discussion we felt that we were finally ready to give her a sibling. I had to admit secretly I was not as "ready" as my husband, to tell you the truth I was completely terrified of having another child. 

My first born Maricela and me! the new mommy 2006

   Why?? Well because...in 2006 shortly after the birth of my first I went into a deep and dangerous depression. Two weeks after her birth I had to check myself into a psychiatric hospital, because I was in a complete haze. I was able to care for my baby girl but I was so anxious about something "bad" happening to her that I was not able to sleep or even eat.  At the hospital I was diagnosed with postpartum depression and my Doctor put me on a strong anti-depression medication as well as a sleeping pill to make me sleep!

    After a 4 day stay I was released to reunite with my husband and baby girl that was one of the best day's of my life. What a little sleep can do for a person is amazing. What I had not realized was, that I had many of the symptoms of depression well before I gave birth to my child. In that last months of my pregnancy I was having crying spells and sleepless nights and even some thoughts of self harm, which I thought were just part to being a crazy prego lady. Little did I know that ignoring all those thoughts and feelings would lead me into a mental breakdown.      

    As part of my discharge plan I agreed to see a therapist on weekly basis. I made an appointment and had my first session it was so odd to open up to a complete stranger and let out my most deepest secrets. As time went by through the therapy sessions, I learned that because of my history with childhood sexual abuse at the hand of two family members, I was terrified of being a parent. And more so... a parent to a little girl.....that explained why I was so nervous about something "bad" happening to my baby. It was not easy but slowly due impart to the therapy and medications I was able to slowly cope with Motherhood. 

Fast forward >>>. to late 2009

I  finally took a leap of faith and got off birth control because I wanted to leave it in Gods hands.

    In February 2010 my oldest Maricela was in a parent participation pre-school where I pretty much "worked" 4 days a week. I couldn't leave her alone with ANYONE. I remember one time I was helping at a art station with another parent, the children were instructed to paint a tricycle using geometric shapes. Well my daughter painted a large red and black tricycle and behind it she painted a identical one but it was much smaller. She then told the other parent at the station "This bike is for me and the little one is for my baby sister. Mommy has a baby in her tummy! and she is gonna stay small forever." I quickly told my daughter we didn't have a baby yet because it was too soon and that it might take some time for God to send us one. Little did I know Maricela was right! I was already pregnant with my baby girl Aliyah and I had no clue.

March 2010