October 28, 2010


There was a documentary on HBO called "Monica and David".  Monica and David are two individuals with Down syndrome who fall in love and get married.  I was expecting a really inspirational 70 minutes.  The reality, for me, was quite different.

I loved that they found each other and their love was so pure.  That part was really touching.  But the reality of these two 30 somethings is not the reality I envision for my buddy.  They live with her parents.  Neither have a job.  They cannot cook for themselves.  They had trouble just stuffing envelopes. 

I'm sure 30 something years ago there was not the support and knowledge that we have now.  I know that the Birth to 3 system has done wonders in giving my buddy a jump start.  I am also aware that there will be a limit to what he can accomplish. 

I joke about wanting him to live with me forever and cruise around in the VW Cabrio I will have someday with the top down.  But it's a joke.  I never thought that he might really have to live with me forever. 

There is one scene "Monica and David" that depressed me the most.  They live in Florida in a beautiful apartment that has an ocean view.  They could go down to the lobby and walk a block or two and sit on the beach.  David talks about how he just wants to sit down there and watch the ocean.  Monica tells him that they aren't allowed to.

I don't want my buddy to spend every day yearning for something out of his reach.  I hope I am able to find that fine line of knowing his true limitations but not holding him back from his true potential.

October 25, 2010


When my buddy was born, I thought the worst words I would hear were, "We think your son had Down syndrome."  Boy was I wrong.  The day came when we were to be discharged.  My buddy was taken into the Special Needs Nursery because his color was off and his temp was low.  Here I was ready to bring my baby home and there he was with tubes up his nose and monitors connected to all parts of him.

I had to bring home an empty car seat and a hospital issued breast pump.  I was so torn.  Monkey bear was only 15 months old and needed me at home yet my newborn was still in the hospital.  I spent the next two weeks pumping every 3 hours, caring for monkey bear and, with the help of my mom, traveling back and forth to the hospital.

All I had to do was step into the lobby and the tears would start.  I carted my little cooler of breast milk with me and snuggled him as much as possible with all those monitors and wires coming out every direction.  The only thing he required was the tiniest bit of oxygen.  Every time they would try to turn it down, my heart would soar as his numbers stayed up.  Then the crash as his numbers would slowly creep down and the oxygen was turned on again.

They finally decided there was nothing more they could do for him and had him transferred to CCMC.  I watched them load my buddy into the incubator and onto an ambulance.  The good news about being at CCMC was he finally had his echocardiogram and we knew for sure that his heart was healthy.  The air is also magical there because after one day, his oxygen was off and he was ready to come home.

Halloween was the day we brought him home and my heart finally began to heal.  I will never forget how wonderful it was to have both my kids in my arms at the same time.

October 18, 2010


My buddy is 2.  I can remember the day he was born so vividly.  The first emotion I felt upon hearing the words Down syndrome was heartbreak.  But I think your heart has to break first, because loving a child with Down syndrome makes your heart grow so much larger than you ever thought possible.  It's like the doctor who has to rebreak your leg in order for it to grow straight and strong.

My buddy is a whirlwind - in constant motion destroying everything in his path.  But when he stops and gives you a smile or a hug.  You just melt.  Nothing else exists at that moment.  It's an amazing thing.

We had our Buddy Walk this weekend.  I am so moved with all the people who came out to support our family.  There are moments where living with Down syndrome isn't easy and I know there will be many battles in our future, but with the help of those we surround ourselves with, each battle will be a victory.  I don't have the words to express how much I appreciate each person who touches our life.

Down syndrome has brought so much into my life.  In many ways, I am thankful that my buddy has that extra chromosome because it brings unconditional love.

October 7, 2010


My buddy loves music.  He will stand in front of the computer signing 'music' in hopes I will open up iTunes and crank up the volume.  My buddy's Dance Mix has a healthy dose of Caillou, a big scoop of Toddles Favorites like 'The Wheels on the Bus' and 'Old MacDonald', a cup full of Baby Signing Time and a sprinkle of Laurie Berkner.  If you try and stray from the mix, you must accept the wrath.  And my buddy requests '5 Little Monkeys' to start off each dance party.

While I may tire of hearing children's songs in the car and tend to sing them in my sleep, it really does work magic.  Car rides are always happy.  I can have a few minutes to make dinner in peace.  And most importantly I can shower.

I made a CD of my buddy's Dance Mix for his room.  I plop him in his crib, crank up the tunes, and shower without worry.  Before he could climb, I could barricade him in my room and shower fast.  But now he can get into anything and does get into everything.  I assume at some point I can leave him alone for a few minutes without fear for his life.

It's so hard not to compare him with Monkey Bear.  She is so aware of the "Rules" and would never dream of breaking a rule.  We never locked any cabinets or cleared off shelves and tables.  You would have to say - a few times when she was younger - "Don't touch" and that was that.  My buddy, oh my buddy, loves to start trouble.  He is into everything.  I fear the day he climbs out of his crib.  I'll have to empty his room of everything and lock him in there at night.

My hope is that someday he will develop some impulse control and sense of this-might-hurt-me-if-I-do-it.  But my hopes aren't too high for it happening any day soon.