I have always loved to have guest writers here on my blog to highlight other mothers in an effort to educate and enlighten not only myself, but all you wonderful people as well. Today we are hearing from my husband’s cousin who at exactly 2 weeks to the day after my Audrey was born, their family welcomed little Lacey into the world. This is the first time Kelley has spoken so candidly and openly about what it was like to hear the diagnosis and how it changed their family forever. At the end I am including the speech her 11-year-old daughter Sydney wrote about her baby sister for a school speech contest…and it won first place.
I was shocked when Nicole asked me to write this post for her blog because let’s just say writing is not my thing. I was also nervous because I didn’t want people to get the wrong idea about how I felt about my daughter the day she was born. But I feel there are other parents in the world that need to know it’s ok to have certain thoughts, feelings and fears when it comes to having a child with special needs. And know that regardless of her diagnosis, you will love your child unconditionally and take on anyone that will doubt her abilities.
Let me be very clear here, I have loved my daughter from the first time I found out I was going to be a mother for the third time, but the time after her birth was probably one of the hardest I have had to endure (with the exception of the recent loss of my father). This is my story on how I dealt with my daughter being born with Down syndrome.
March 24, 2010 at 6:31 PM I became a member of “The Club” as my friend Kelli likes to say. It’s not a club I planned to become a member of and it’s a club that caused me many tears that first year after becoming a member. You see, that night I gave birth to a healthy baby girl with Down syndrome.
To say it was a total shock would be a lie, you see 20 weeks before that night I received a call in my office from my doctor to say that my QUAD screen was positive giving me a possible 1 in 90 chance that my unborn baby would be born with Down Syndrome. At this point the doctor needed to know what I wanted to do since I had refused all genetic testing at the beginning of my pregnancy. Please know that abortion was never a thought in my mind and thankfully I had a wonderful doctor who never once suggested that I abort my baby. My husband and I had decided on genetic counseling and then genetic ultrasound, from there we would decide if we wanted more testing.
The week before Thanksgiving we went for our genetic counseling and genetic ultrasound. I had prepared myself with a list of questions I could ask regarding terms like nuchal fold thickness, cardiac abnormalities, duodenal atresia, hyprechogenic bowel, bilateral renal pyelectosis, brachiocephaly, or choriod plexus cysts. All markers that were typically seen with an unborn baby with Down syndrome.
We had already had a regular ultrasound but we never were able to find out the sex because this baby was very active. Throughout, I kept saying ‘an active baby is a healthy baby!’ And I couldn’t help but laugh when they told my husband Jeff and I that we will be adding another daughter to the two we already had. We never cared if it was a boy or girl, we just wanted our baby to be healthy and because they did not find any strong or soft markers we decided not to have a risky amino.
I wish I could say I enjoyed my last 20 weeks of my third pregnancy but that would be a lie. My gut instinct told me to be prepared even though the only thing that was positive was my QUAD screen. I worried myself sick those last 20 weeks. I was sick all the time, I gained a significant amount of weight and cried a lot in the shower.
The day I went into labor with my baby girl I had pink eye and bronchitis. I delivered via c-section and when the nurse brought Lacey Catherine into the recovery room I knew that my world would forever be changed. I would never be the same person that had walked into that hospital just four hours ago, laughing carelessly about the crazy day we had. No, I was now going to be a mother with a child with special needs and I would never again look at things the same. Words that never bothered me before would make my skin crawl because I now had a daughter with Down syndrome.
I didn’t want to open my mouth and say anything because then I knew it would all really be true and I didn’t want it to be. I didn’t want to join “the club”. I just remember feeling like the recovery room was getting smaller and smaller with each breath I was taking and my anxiety was taking over. I wanted to get up and run away pretending this day never happened but because of the spinal block I couldn’t move. I thought if I could just close my eyes I would wake up and hopefully this nightmare was over.
All of our immediate family got to see Lacey and no one said anything so I thought maybe I was crazy and she was normal. Even Jeff had stayed quiet. But when I saw the look on the nurse’s face and the doctor came to talk with us I knew what he was going to say. At that point I just wanted to scream, cry, hit something and argue that the ultrasounds didn’t show anything.
I was in total shock and I couldn’t stop thinking about how everyone would react to the news. I remember thinking how she will be treated differently, all because she has this extra chromosome. People will not love her the way they love her sisters. Will they even want to hold her? Will she know if they are not comfortable with a baby with Down syndrome? I didn’t want people to make fun of my daughter or call her “retarded” or whatever other horrific things people say. I don’t want people to look at me with pity because I had a baby born with an extra chromosome. I remember being wheeled to my room and I kept saying to myself, “You are not going to cry” because Lacey’s sisters will not understand why their mother would be so upset.
My sister-in-law took the girls out of the room, so we could tell other family members the news. I never did cry in front of anyone, I felt I had to show I was strong and that I could handle this. I remember looking at my husband and it was the first time I saw him cry and it broke my heart into a million pieces because I feared it meant he wouldn’t love her. Man, how wrong I was. Jeff cried because the ultrasounds never showed anything was wrong and he was angry. But he soon shook it off and from that day on he has been totally in love with his little miracle. Jeff has said we can handle anything they throw at us, so we know Lacy will be fine because we are her parents. I remember thinking all she needs is love from us and everything else will fall into place.
Soon after she was born there was a concern from the Doctor about Lacey and I remember hearing the word Leukemia being said. I was in such a daze I didn’t understand, but basically the Doctor said that Lacey’s white blood cell count was up and that she was also showing immature white blood cells in her blood and her platelet count was low.
In the end, Lacey’s body fought back and her counts went back to normal but my greatest fear is because of this my daughter now has a 30% increased risk for developing a type of Leukemia called nonlymphoid by the time she is three years old. We recently had her tested early and at this time her blood count is normal. I can deal with her extra chromosome but I can’t imagine watching my baby girl go through chemotherapy. That is a bridge we will pray we never have to cross. The other issue we had during her first 6 months of life was trying to keep weight up. She had lost almost 2 pounds and we had to go to the Doctor every week. It’s funny to say now but we would cheer if she gained an ounce. Then we went to Florida when she was 6 weeks old at which time she gained 2 pounds while we were gone and from there she continued to gradually gain weight.
Lacey was also born with a few heart defects but at 6 months of age her PDA finally closed which meant no heart surgery. There were many other tests we had to have that first year: hearing, vision, blood work to check her thyroid. These test she continues to have every 6 months. It seemed like the time we would spend that first year at Dayton Children’s Hospital in Dayton Ohio would never end. At four weeks old Lacy began seeing a developmental specialist for physical and occupational therapy and continues to receive these therapies in addition to speech therapy.
The whole first year there are a lot of things we had to learn and go through which at times were very confusing and frustrating. I didn’t join a support group, because that is not my thing, but I know for a lot of people it’s helpful. I am just not a ‘support group’ kind of person and chose my own way of dealing with what my family was going though.
One of my best friends happens to be the President of the Miami Valley Down Syndrome Association and she has been an amazing support system for me. I also started to research and read different books regarding Down syndrome. One that I found that helped me with the guilt I was feeling over my own emotions was The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood and Self-Discovery by Katheryn Lynard Soper.
Reading all the information you are given is a great help but honestly, I could live with out the scary stuff that may, or may not, happen to my daughter. I just wanted to enjoy her and I was afraid that maybe reading everything would take that away. It can be overwhelming all the things you need to be aware of but we have truly been blessed with the state of Lacey’s health.
People should not mistake having Down Syndrome with not being healthy. My daughter is very healthy. She has met a lot of her milestones and in some areas she has surpassed them. She rolled over at the age of 2 ½ weeks and never stopped. She walked by 17 months. She said “love you” at seven months to her dad. I laugh because they have always said “she will be slow” but anyone that knows my daughter knows that being slow is just not in her, she has one speed; fast. Her biggest delay has been in her speech but sign language has helped with the lack of verbal skills.
Lacey is an amazing child and I used to feel guilt over the many tears I cried because of her diagnosis but in the end it was because of the ideas that society has placed on people with Down syndrome, that sadly, I also believed. Once she entered our lives and showed us a new way to live I don’t believe that way anymore and I will take on anyone that even thinks about doubting my daughter’s abilities.
I am a one Mama Bear you don’t want to mess with when it comes to my baby girl. Lacey has more determination than any child I know and she is out to prove to everyone that she is not a Down syndrome child but a beautiful little girl who just happens to have Down Syndrome. It’s so hard to believe it’s been almost three years since I received news that my daughter may be different. The thought of that scared me more than anything in this world, but since that time there have been so many other things in daily life that have changed that perception. I now realize this diagnosis is not the end of the world and no one has any reason to feel sorry for us because our daughter was born with an extra chromosome. If you could just see or hold my daughter just once, you would understand that to know her is to love her.
Lacey is our ray of sunshine and she brings so much joy and love to our family. I know there have been many people who have wondered and we have even been asked, “If you had the choice, would you take away the down syndrome?” Here is my answer; If we took away Lacey’s Down syndrome then she would not be Lacey. What I would like to take away is people’s stereotypes about what Down syndrome looks like.
But the LORD said to Samuel, “Do not consider his appearance or his height, for I have rejected him. The LORD does not look at the things people look at. People look at the outward appearance but the LORD looks at the heart.” 1 Samuel 16:7
Please enjoy the amazing speech that my 11-year-old daughter, Sydney gave at her school, which won her a speech contest.
Speech Topic: A time when volunteers made a difference.
By: Sydney Yontz
Have you heard of Down syndrome? I learned about Down
syndrome nine months ago, when my parents told my sister and me
about our 2 year old baby sister, Lacey. When she was born my parents
never told us that she had Down syndrome. I knew she had to go to
the doctor and have therapy a lot, but I just thought something was
wrong with her heart. When my parents sat my sister and me down to
explain it to us, they told us that she had Down syndrome, which meant
she had an extra chromosome, and that she may be slow to learn things
like walking, talking, and reading. The easiest way to explain Down
syndrome is to say my sister was born with 47 chromosomes instead of
46 like me. She has 3 copies of her 21st chromosome. I only have 2.
The Buddy Walk is a group that is working to bring awareness
about Down syndrome to the public. The Buddy Walk was started in
1995 by the National Down Syndrome Society to raise awareness and
acceptance for people with Down syndrome. The Buddy Walk is
organized by volunteers. These volunteers get people involved to walk,
raise money, and raise awareness about Down syndrome. These
people do not get paid any money to do this. The payment they get is
the satisfaction of seeing all the smiling faces from the children and
adults during the event.
My mom’s friend, Kelli is the President of the Miami Valley Down
Syndrome Association. She said they raised over $80?thousand dollars
last year for their Buddy Walk in Dayton. The money will go to help
fund programs like summer camp, help parents pay for therapies, and
this year they will be buying iPad’s for some families. They also give 7%of the money they earned to the National Down Syndrome Society and
this money is used for research. Nationally, the Buddy Walk raised over
$11?million dollars last year to help provide programs and services.
Back when the Buddy Walk first started they only had 17 walks
throughout the whole United States, but last year they had over 300,
and even had their first walk in the country of Japan.
So, what has the Buddy Walk done to change America? Last year
alone, there were almost 300?thousand people that participated in the
Buddy Walk to raise money for Down syndrome. But more importantly,
these volunteers helped raise awareness and educate millions upon
millions of others about Down syndrome.
So, why is this awareness about Down syndrome so important you
ask? As my mom says, “my sister is part of the lucky 15% born with
Down syndrome”. Yes, I just said my sister is lucky to be born with
Down syndrome… You see, nearly 85% of parents when told their baby
will be born with Down syndrome, will choose to have an abortion.
Which means that the parents will end their baby’s life before it is even
born. I can’t imagine my sister not getting a chance to live. And I can’t
imagine my life without my sister. She is the best sister in the world
and I love her so much.
One of my biggest fears for my sister is that someone will make
fun of her as she gets bigger, and the Buddy Walk is doing a great job in
promoting awareness so that one day my sister will be accepted by
everyone, and no one will call her mean names and make fun of her. I
also hope that one day, with the help of the Buddy Walk that those 85%
of parents who are going to choose to end their baby’s life will go down
to zero. Those babies deserve to be lucky too, just like my sister.