Today, I’m sharing a guest blog by my friend Lisa, owner of Evolution Vintage. Her son was born with Down syndrome, and in honor of National Down Syndrome Awareness Month, she has offered to share her story. When I read this, I had tears streaming down my face – not because I felt sorry for Lisa’s son Blake, but because she inspires me as a mom. I hope you are as touched by her story as I was:
Down But Not Out
By Lisa Graystone
Friday the 13th turned out to be the luckiest day of my life … in hindsight. I gave birth for the second time to my son Blake under very traumatic circumstances. He was born blue, lifeless and his first sounds resembled a watery gurgle, not a cry. His birth was fast and as a result he had lungs full of water and had the umbilical cord wrapped around his neck twice. I was unable to hold him before they rushed him to the special care nursery for respiratory therapy and monitoring. We spent 6 days in the hospital. During this time, due to the shape of his eyes, the doctors suspected Blake had Trisomy 21; also known as Down Syndrome (DS). He fought to live and to be here, only now to be faced with a prospective hurdle he would continue to jump for the rest of his life. The postpartum hormones were swirling as I sat down the hall from my new son who was fighting for his life; quietly smelling the receiving blanket from his NICU nest and pumping my breasts alone in tears. Nine agonizing days later, the test results confirmed the doctor’s suspicions. The joy and relief that my son was alive was immediately shrouded in darkness, sadness, despair and shock. I am under 35 and was not given the option of amniocenteses (the test that can conclusively tell you if your baby has DS). The blood test that was available I opted not to do because of the high false positive rate and the fact that there were no “risk factors” – my first child was healthy and my ultrasounds were normal and we were reassured that everything was “fine.” I was surrounded by fear and unknowns, questions with no answers and a baby boy to care for.
I have no time to be on the “why me” program being the ambitious mompreneur that I am. I had to force myself to say: “WHY NOT” and bring it on to my already full plate. There seemed to be no other alternative than to take it head on and realize that the only thing I can control is my attitude, approach and perspective. I feel very lucky to have been given this boy and with him the opportunity for personal growth, education and evolution.
I introduced Blake to my family and friends (many who live 3,000 miles away in Canada) via this letter written from his perspective:
“My name is Blake John David and I was born Friday May 13, 2011 @ 4:04pm California time (8lb 3oz & 20in). My birth was a very traumatic experience for both me and mommy. I was born naturally after only 5 hours of labor and 4 BIG pushes. I had the umbilical cord wrapped around my neck twice, aspirated meconium (poop) and had 2 wet lungs because I was not in the birth canal long enough to have it naturally squeezed out. I was born dark blue and not breathing. The midwife and nurses worked hard to resuscitate me and suction my lungs to help me out. My mommy was not able to hold me and I was taken to the special care nursery (NICU). I was placed under a heat lamp in just my diaper, placed on oxygen and had an iv tube inserted in my hand. I was covered in stickers monitoring all my vital signs. I stayed here for a total of 5 days and my mom and dad could not even hold me for the first 48 hours. I fought really hard to breathe and clear my lungs of the left over water, battled jaundice and had only sugar water to “eat” for the first 3 days. I could not nurse because of my oxygen tubes so mommy pumped for me every three hours for a whole 4 weeks to make sure I got all the antibodies I needed.
At the end of my first day my pediatrician came to my mom and dad and told them they suspected I had a common genetic disorder called Down Syndrome (DS). The test took 9 days to come back to confirm what the doctors believed. I had ONE physical characteristic of DS, the shape of my eyes. I have no other physical characteristics common to DS, and I also have none of the health concerns common to the disorder. I just have an extra chromosome in each of my cells. My mom and dad have had a difficult time at first as they were shocked by the news. They have started their climb up mount acceptance, and we have already started an early intervention program with the best professionals in our county. I passed both my hearing and vision tests and have no heart defect or internal issues. We will not know what difficulties, if any, I will have until I grow. I will develop and grow just like every child does. I will just do so on my own timetable and at my own pace. I do not want to be treated “differently” or “special” because I am neither of those things. I want to be loved and accepted for who I am just like any other human being.
My mommy will soon become the biggest advocate for me and all children with DS to remove the social stigma, to educate the public, and remove the limitations we are perceived to have. My potential, like ANY child is limitless and my success in life will be based on how hard I work for the things I would like to achieve, just like any other person.
I love you already, BLAKE
Brother and Sister
My son is plus one (chromosome) but not minus anything. I truly believe that a focus on his abilities and not his perceived disabilities will be the key to his future success and my piece of mind as his mother. Just like any other child, I have no idea what he will “be like” or what difficulties (if any) he will have. I still struggle with it though; I have my fears and doubts: Will he be teased? Will he have friends? A job? Someone to love? But what I have realized in the last 4.5 months is that I had the same motherly fears/thoughts with my daughter too; they are just enhanced when we apply labels such as “DS” or “Disability. I had to acknowledge that my hopes, dreams and fears may not be Blake’s and it will be up to him to decide what he wants out of his life, just like it is for every other person. All fear is based on ignorance and it will be up to mothers like me, other amazing mothers like Tori and miracle babies like Blake to spread the word and educate others. I have good and bad days too but it all washes away when I look into those beautiful deep blue eyes of his that gave away his secret. We may be DOWN but we are not OUT! What is “normal” anyway? Sounds boring to me.
Some Down Syndrome Facts
I. Trisomy 21 occurs when three copies of the twenty-first chromosome is created instead of only two. This results in the person possessing 1 extra chromosome (47 chromosomes instead of 46).
A Karyotype of a Down Syndrome Boy. A Karyotype is an organized profile of a person’s chromosomes.
II. Down syndrome is the most common chromosomal disorder in the world. Approximately 1 in every 733 babies is born with Down syndrome, representing approx. 5,000 births per year in the United States.
III. Approx. 6 million people in the world and more than 400,000 people in the United States currently live with Down syndrome.
IV. Down syndrome occurs at conception, so nothing in the pregnancy can cause Down syndrome to occur. Neither parent is the “carrier” of the extra chromosome. It is a completely random genetic “error. It is caused by an error in cell division called nondisjunction. Researches do not know why this occurs.
V. 80% of babies born with Down Syndrome are born to women under 35 years of age.
VI. Children with Down syndrome can have mild to moderate impairments (physical and/or cognitive) but it is important to note that they are more like other children than they are different.
VII. The average person with Down syndrome can live to be upwards of 60-years-old.
VIII. Most children attend their neighborhood schools, some in regular classes and others in special education classes. Some high school graduates with Down syndrome participate in post-secondary education (University or College). Many adults with Down syndrome are capable of working in the community and living alone, but some require a more structured environment.
Remove your fears, questions and prejudices about people with Down Syndrome by taking the time to educate yourself.
National Down Syndrome Society: http://www.ndss.org/
Thank you, Lisa. How do you plan to observe National Down Syndrome Awareness Month?
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