Dear  Parents,
I carried my two year old to the car on my hip with a calm that belied rational thinking.  I had just been told that the baby who grew inside of me had a 1 in 72 chance of having Down syndrome.  Normally those odds would not have bothered me, but instead they confirmed what I had been feeling for months.

After being bombarded with information about Down syndrome for several weeks at the beginning of my pregnancy, I turned to the Lord in prayer feeling that He was trying to tell me something.  My friends and family tried to assure me that you just notice that type of thing more when you are pregnant.  I, however, truly felt that this was more than a coincidence.  I began asking people to pray that we would be strong enough to accept God’s will for our lives…. for our baby’s life.

“The markers on the ultrasound could mean nothing”, my obstetrician had tried to reassure me.  Once I shared with her the “coincidences” I had experienced she told me, “Some people say it’s women’s intuition, some people call it the voice of God.  I was not going to offer you an amniocentesis, but if you want one, we can do that.”

Joe had not been at this appointment with me, as we had just had the ultrasound the day before and saw the images of our perfect little baby girl.  I rushed home to tell him what we had not seen; she had fluid retention on her kidneys, and she was measuring a bit small.  Neither of these was too alarming to the doctor but together they were considered to be soft markers for Down syndrome.

We decided that we wanted to have the amnio done so that we could learn about Down syndrome and be ready to welcome our new daughter armed with knowledge.  We also wanted our families to be happy the day she was born, and make the necessary emotional adjustments so that they could support us fully.

Less than two weeks later we received definitive news that our daughter did indeed have an extra 21st chromosome.  As prepared as we thought we were, our grieving process began with full force.  I became fiercely protective of the life that moved inside of me and saw the world as a hostile environment that wasn’t worthy of her presence.  Joe said that he could not imagine ever laughing again. Little did he know that this little person would bring more laughter into his life than he could fathom!

We quickly reached out to others and gladly accepted any offer of help that was given.  We made connections in the community and back home in Kentucky with families that loved a child who shared our daughter’s condition. As we gained knowledge our fear diminished and we became ready to parent this special girl.  We decided early on that we would not only accept our daughter’s diagnosis but that we would celebrate it as a unique gift that inspired a communication from our God to us.  She was made by Him, of that we were sure, and we rested confidently in the fact that He had a plan for her life.

What we couldn’t have known at the time was that it would be us who would be changed more than anyone or anything else.  Our firstborn, Darrah, was the daughter that we wanted but Tarenne was definitely the daughter that we needed.  I think it helped that our firstborn had been precocious and reached all of her milestones before most of her peers.  I had felt the sting of envy from other mothers and was determined to allow Tarenne to unfold at her own pace.  We provided every opportunity that we could for her to succeed but we did not spend too much time worrying about what she was NOT doing.  We celebrated what she was achieving in her own timeline with her God given determination and fierce independence that was strongly in place from the time she arrived.

She immediately suckled and I was thrilled! I had long-term nursed my first-born and placed a great importance in providing that same nutrition for Tarenne.  However Tarenne had other plans; she planned on sleeping her first months away!  We could not wake her even to eat and had to use a finger feeder to keep her nourished.  Then finally at 13 weeks, just as I was about to give up, she latched on and nursed like a pro!

This was to be a theme that she carries out to this day.  She will show me that she is capable but that she will fully accomplish something only when she is ready!

All of the research and learning that I did during my pregnancy was helpful to me, but I’m not sure how much it benefited my baby girl.  You see, despite the fact that she shares an extra chromosome with others who have Down syndrome, she is still uniquely Tarenne.  The books and other parents could no more tell me exactly what to expect than they did with my first child.
No one could have explained to me the pride that I would feel as a result of her self-confidence and love of life.  Tarenne is the first one to jump in and help me without being asked. She is very detail oriented and has learned where things go around the house before her siblings, or even her Dad for that matter.  She insists on doing most things alone and even taught herself to tie her own shoes.  She is shy in large groups but is the life of the party when she is comfortable.  Her sense of humor is the truest sign of her intelligence and intuitiveness.  She is nothing like I expected her to be and everything that I could have wished for.

Tarenne first recognized that someone else had Down syndrome when she was just 3 years old.  A woman passed us at the zoo and Tarenne quickly said, “MOM, DAD!” and signed “same” and pointed to herself.  People often like to tell us that Tarenne is “high functioning” and you may be thinking the same thing.  Since Tarenne was born 9 years ago we have had the pleasure of being around hundreds of people who share her diagnosis.  There are definitely those who achieve more than she does and some who do not.  But if we stop there we are missing the point of what ALL of these unique individuals have in common; they don’t care! It doesn’t matter!

There should be no competition in the value of life and that is what Tarenne has taught us more than anything else.  She has changed the very essence of who we are as she has shared that wisdom with us.  Learning to love all people and enjoy them for who they are is a gift that is invaluable. There is something to be appreciated and even beauty in each person and each moment if only we allow ourselves to see it. And oddly the biggest lesson that she has taught me is the only one that I needed to know before she was born!

Sincerely,

Nicole Maher