My kid has more chromosomes than yours!

During my senior year in high school I had to do a presentation on Down syndrome as part of my final grade in biology. Maybe some of you don’t know what Down syndrome is so let me tell you. Down syndrome (DS) or Down's syndrome, also known as trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. Down syndrome is the most common chromosome abnormality in humans. It is typically associated with a delay in cognitive ability (mental retardation, or MR) and physical growth, and a particular set of facial characteristics. In my presentation I was mainly focusing on children with this genetic disorder. In a little place at the Adriatic coast where I have a beach house close to me live two families with children who have Down syndrome. Both of them are girls, Matea and Lucija. Even though I don’t really like kids, Lucija and Matea immediately stole my heart. They are so precious. Both of them have great and strong personalities. Sometimes they can be very stubborn. Down syndrome symptoms vary from person to person and can range from mild to severe. Both of my little neighbors have mild forms which gives them the opportunity to do a lot of activities. In many important ways, children who have Down syndrome are very much the same as other children. They have the same moods and emotions, and they like to learn new things, to play and enjoy life. Lucija and Matea enjoy swimming, dancing, running around and playing other games that children love. This presentation of mine was mostly inspired by them and is definitely one of my best because I truly put my heart and soul into it. I could go on about Down syndrome and how you can tell if your child has it and inform you about all the medical stuff related to it but instead of that I am going to let you read a letter from a mother whose child has Down syndrome. The letter is aimed to other mothers who have just found out that their child has this genetic disorder. This letter made me cry and be thankful once again for being healthy.

Dear mom who just received a prenatal Down syndrome diagnosis,

I know how you feel.

Except — unlike you, I was holding my new baby, Kate, in my arms when I found out. She was wrapped in a blanket, looking up at me as I cried, listening to the Neonatologist on staff tell me — only minutes after she was born — that she had Down syndrome. And what that meant.

He said that it meant she had an extra chromosome. And that she would have learning delays. He said that it meant she was significantly predisposed to certain medical conditions, including congenital heart defects — and that we should get her heart tested right away. He said that it meant she had low muscle tone and may not be able to breastfeed. He said that it meant she would do things on a different schedule than other kids.

And in those first few days, after hearing those statistics, talking to doctors and researching online, I thought I knew what it “meant” to have a child with Down syndrome. And quite frankly, I was devastated.

And so it is with you.

But let me tell you — from one mother to another — those facts are not what it means to have a child with Down syndrome.

Many of those facts may not even apply to you. Some might, but many might not. I’ve learned this with all of my children. And I never allow generalizations to set my expectations. (For the record, Kate breastfed like a champ and continues to break stereotypes.)

What those facts didn’t tell me about Kate is that — along with almond eyes and slightly lower muscle tone — she would also have my thick, blond hair and full lips. That she’s a Daddy’s girl. That she loves peanut butter waffles and rocking her baby doll to sleep. They didn’t tell me that she’s a nurturing big sister, a doting little sister — and the star in the room wherever we go.

Those facts didn’t tell me that she would make funny faces and dance like crazy to Fresh Beat Band. That she loves to sing. And swim. And go to gymnastics. And unload all of my kitchen cabinets.

What those facts didn’t tell me in all that they “meant” is what she would mean — to me, to our family, to our friends.

I look back on those first days and I remember the feeling of craving normality. I didn’t want to hear how life would be forever altered in some big way and that I would just learn to accept it. I just wanted life to be the way it was before — routine, “normal.”

Will things ever be normal again? I thought.

And then one day — soon — they were. Except they weren’t like before. They were better.

Suddenly, the overwhelming facts and fears faded. Because instead of knowing a diagnosis, I grew to know her.

And so it will be with you.

Because of her life, I have the unique perspective of seeing the best in the human spirit — and not just in her spirit (though she’s quite spirited!) but in everyone else.

In a world where it’s easy to view strangers through skeptic eyes, I have seen an outpouring of love and compassion surrounding her. I have connected to those I wouldn’t have otherwise. I have had strangers stop me on the street — just to tell me how beautiful she is.

The world can seem like a scary place for any child, especially those with a disability. But I have met so many who just want to love her.

I cannot tell you what challenges your precious one might have — just as I cannot tell you what challenges anybody’s child will have, “special needs” or not. One aspect of your child’s life just happens to be detectable by prenatal medical technology. But prenatal testing cannot tell you who your child will be, anymore than a fuzzy, black and white sonogram can tell you how your child will look.

When Kate was just a few months old, I went to Target to pick up some groceries. In line that day, I met the mom of a 19-year-old man with Down syndrome. And when I shared that my daughter also had Down syndrome, her eyes softened and she held my gaze with a warm smile.

It was as if we were both part of a secret sorority and she was an old pledge member. She asked me a few questions and before leaving, softly said the words that I’ll pass on to you here:

“Welcome to your beautiful journey.”

From my heart to yours,

Lauren

"Although the world is full of suffering, it is full also of the overcoming of it." Hellen Keller

XOXO A.

:)

Good fences make good neighbors?

“Good fences make good neighbors” is a line of the poem Mending wall written by Robert Frost which I came across while reading something on the internet. The poem is about the relationship between neighbors and more generally about the relationship between people. The question is do we have to keep distant from one another and if the answer is yes, what is the distance we have to keep in order to have a good relationship between our neighbors and humans in general?

First thing we have to think about is, is the wall necessary? In the poem we can see that the author didn’t seem to like the wall, but the neighbor seems to prefer it. The advantage of the wall is that we can limit the amount of privacy one can have. The disadvantages of walls are that we unintentionally distance people from ourselves, and in the process we hurt their feelings. 

However and this is coming from the point of view of the speaker, if we don’t build a wall we will give a more comfortable atmosphere which is nice, but on the other hand should we sacrifice our own comfort by reducing the level of our own privacy? By putting up a wall we clearly establish a border between ourselves, and the world around us, between how much we want to give out to the world and how much we want to take in.

To conclude we can say, yes we need to build fences and not walls. Walls between people provide huge gaps and alienate us from one another, while fences provide us with a level of privacy, which is enough for ourselves, and also prevents us from being too intrusive into other people’s lives.

"People have discovered that they can fool the devil; but they can't fool the neighbors."

Francis Bacon

XOXO A.