Thursday, October 13, 2011

31 for 21 - Day 13 - I'm Glad I Have a Child With Down Syndrome Because. . .

Boys got haircuts today with Miss Maureen.  The look on Tommy's face is too precious.

Today we participate for the 2nd Thursday in a row in the 31 for 21 Blogging Awareness Challenge in which bloggers have committed to try and blog 31 days in October to raise awareness for Down syndrome.  Each Thursday of the month of October, the bloggers are writing about a joint topic to try and spread the united voice.  Today's topic is "I'm Glad I Have a Child With Down Syndrome Because. . ."  

My personal theme for all of October is "Shedding light where there is darkness."  What that means is trying to spread awareness and acceptance.  Trying to educate and inform.  Trying to help show the world that every human should be valued and honored.  I'm glad I have a child with Down syndrome because he is so very amazing.  Because he helps inspire not only our family, but other people to be better.  To give more.  To accept more.

I got a phone call today from the woman who created Joey's birthday cake.  She is a designer at Ethan Allen.  Each designer is going to create a tabletop design for Christmas and then they are dedicating it a non-profit or charity of their choice.  She only knows Joey through making his amazing birthday cake, but she called today to see what the name of the organization was that we were all walking with back in August for the Buddy Walk.  I told her it was the Up Side of Downs out of Cleveland, Ohio.  She is dedicating her table to the Up Side of Downs because she felt a connection to this amazing little boy after he made it through his heart surgery and first year of life.  As my friend Kelly said to me the other night-- Joey's journey is powerful.  I am so glad I have a child with Down syndrome (also now called Joey syndrome -- thank you George Estreich and your wonderful book for turning me on to this phrase) because his story, his hard work and the way he makes our world a better place is all summed up in one word-- Powerful.

Can you believe this is his scar?  His surgery was June 8, 2011-- doesn't he look amazing?

Another reason I am glad I have a child with Down syndrome is that I no longer fear.  When I was pregnant with Joey I was filled with fears.  I pretty much sat around day and night and thought about all of the "what ifs" in the world.  What if Tommy finds his brother to be a burden? What if Joey doesn't survive?  What if I don't know how to take care of him?  What if our family falls apart from all of the burden and stress?  What if our friends don't want to be around us anymore?  What if our family blames us?  What if people are mean to him?  What if he doesn't speak?  What if he doesn't walk?  What if he gets cancer?  What if he gets half of the things listed in the book on Babies with Down Syndrome?  What if I am never happy again? What if I don't love him as much as I love Tommy?

The fears were never-ending.  Day and night.  I tried to tell myself to enjoy the pregnancy, but the fears were always there in the background.  One weekend I was at mass and our Pastor, Father Kraker told the story of a man who was truly in the deepest despair of his life.  This man was in a very, very dark place, close to death and facing countless odds.  At that moment, the man who was going through so much trauma said that it was in that darkest moment that he truly felt cheek to cheek with God.  That sermon was a turning point for me.  Instead of looking at each fear and worry I started to believe that during this "despair" I was actually cheek to cheek with God.  I was closer to God at this time than at any other in my life because I needed God's grace so desperately.  

Once I started letting go of each fear, I slowly became calmer and more ready to accept God's will no matter what it was.  I let go of all the control I so desperately wanted.  I stopped worrying and started accepting.  Despite this new attitude, things did get worse before they got better.  I was diagnosed with gestational diabetes.  They found fluid building up again around Joey's abdomen.  My fluid started measuring high.  It seemed that with every appointment there was some new issue.  

However, once I let go and let God, I was okay.  For this, I am so very glad I have a child with Down syndrome.  I am so grateful to have had this experience so early in life so that I can enjoy Joey's life with all of my being. 

Here are the lyrics to the song that gets me through those dark times when I am full of despair and want to give up. My personal favorite version is on Catholic Classics (thank you, Mom!  I listen to it a lot more now than I did in college) and I play it on our Ipod in the kitchen on Sundays so the boys can get their fill of mom's religious music. 

Be Not Afraid by John Michael Talbot
Verse One
You shall cross the barren desert, but you shall not die of thirst.
You shall wander far in safety though you do not know the way.
You shall speak your words in foreign lands and all will understand.
You shall see the face of God and live.

Be not afraid.
I go before you always.
Come follow me, and
I will give you rest.
[ Lyrics from: ]
Verse Two
If you pass through raging waters in the sea, you shall not drown.
If you walk amid the burning flames, you shall not be harmed.
If you stand before the pow'r of hell and death is at your side, know that
I am with you through it all.

Verse Three
Blessed are your poor, for the kingdom shall be theirs.
Blest are you that weep and mourn, for one day you shall laugh.
And if wicked men insult and hate you all because of me, blessed, blessed are you!

I am also glad I have a child with Down syndrome because there are many, many resources for parents of kids who have Down syndrome and for this I am very, very grateful.  For us, I feel that we are lucky we have an actual diagnosis that allows us to focus on helping Joey in every way possible. For many parents who have kids with different abilities and needs, there is not always a diagnosis.  It's not as easy to just say, "Oh, Joey has Down syndrome."  Many of these parents have to repeat the lists of symptoms and behaviors that are not conveniently packaged into one single diagnosis.  Part of Joey having Down syndrome has helped us to become more aware and more empathetic of the journey of every individual-- diagnosis or not.  Each person has some kind of cross they are carrying.  It's just a matter of taking the time to learn a little bit more about that person.  Down syndrome has helped us to learn this.  

Reading Material
Last year when Joey was only 4 months old we went to a local Christmas party for children who have Down syndrome.  It was one of our first major outings and we had no idea what to expect. My greatest memory of that day was walking into the foyer of the large party center and smack in the middle was a beautiful young girl, Sarah.  She was sitting in her pretty holiday dress reading one of the Babysitter Club books.  I did not even notice that she had Down syndrome.  We started talking and we figured out that her birthday was August 28th and Joey's was August 27th.  I have never forgotten meeting Sarah.  Reading is one of my greatest pleasures and after meeting her I have held on to the hope that someday Joey will read.  Below are some of the reading material we use on pretty much a daily basis in one form or another.  I recommend adding each on to your own Down syndrome library.  The only one not photographed is The Shape of the Eye which is currently being loaned out to a friend.  Here's to hoping our baby boy likes to read one day!

1 comment:

  1. I didn't have a pre-natal dx, but after she was born...I felt the same way. And I'm so grateful for the lessons of faith I've had..not comfortable, but so critical!


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