Why do you ask?

As most of you know I have an 11 year old daughter with Down syndrome.  She brings tons of joy and laughter to our lives, but she is by no means "very loving" or "really sweet" she is her own person with likes and dislikes and mood swings, orneriness, silliness and sweetness. I really don't believe she falls into any generalization about persons with Down syndrome.  She has had many health problems including two open heart surgeries and one closed heart surgery, diaphragmatic hernia repair, and too many other surgeries to count, several hospitalizations due to pneumonia's and other infections.  It is most likely that due to these surgeries and other illnesses she is more developmentally delayed than she would have been had she not experienced so many illnesses.  It often feels like my life is largely devoted to keeping her healthy. She also has, what we like to refer to as a "side" of autism.  She is largely non-verbal, but she uses a device to help her communicate, knows a few signs and has vocabulary of about 100 words, but her receptive language is expansive. 

I adore her.  I would not want my life to be any other way.  She is perfect.  I would choose her again and again.  My love for her is as deep and complex as it is for my other "typical" children.

What I find totally fascinating is that I am constantly asked if I knew she had Down syndrome before she was born.  The answer is YES, I did know.  I was 11 weeks pregnant when I learned I was expecting.  When I had an ultrasound to see how far along I was, the ultrasound tech detected thickening on the back of her neck which would indicate a chromosomal abnormality.  I then had an early amniocentesis which clearly identified her chromosomal abnormality as Trisomy 21, meaning she had an extra 21st chromosome.   I was devastated. I did a lot of grieving.  I felt like I would never be able to live a "normal" life again.  I did not want to be different than everyone else.  But as I pondered all of the families I knew, I realized that all of us are different in some way.  Some families have children with ADHD, Autism or drug addiction.  Very few of us are able to know what our children face before they are born.  So for me, continuing the pregnancy was a no brainer. She was my BABY, and I already loved her and wanted to protect her.

In the months leading up to her delivery, I did lots of grieving.  I also did lots of research.  I knew through a fetal echocaridogram that she would need open heart surgery by the time she was 3 months old.  I learned that kids with Down syndrome benefit from early intervention and lots of stimulation.  I prepared my life to welcome this new baby into our family.  I had friends who agreed with my decision to continue my pregnancy and I lost a few friends who thought it was cruel to bring her into the world.  For me the decision was deeply personal, not something I thought anyone else had the right to weigh in on. 

By the time Maggie was born I had prepared myself in every way I knew.  When she arrived, I was shocked by was her perfection!  She was so beautiful with a head full of silvery hair and wise blue eyes that could melt your heart.  I had done most of my grieving prior to her arrival and was able to rejoice in her flawlessness. I was able to open my heart to her and begin the battle for her survival.
So the answer is yes, I knew.  That is the beginning of Maggie’s story and my journey as her mom.  She is a blessing, as all children are.  She is zany, and I mean zany.  My life is filled to the brim with adventure.  She challenges me to be a better mother and a better person.
Please feel free to ask me questions about Down syndrome, I love to answer them.  In many ways she is different than many children, but her similarities are many as well.

This is Maggie. She has had an AV canal repair at 11 weeks, and Mitral valve repair at 3 years old, and a vascular ring repair at 9. She is quite a little character!