worse

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.

gratitude

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.

music

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.

next generation

I can't believe that I went 33 years of my life without really knowing someone with Down syndrome.  It seems hard to imagine.  I graduated from a fairly large High School - my class was 450 students.  You mean to tell me there was no one my age or even a year or two on either side of me with Down syndrome?  Or perhaps they weren't included and were off in a separate space.  And maybe they were there and I just didn't notice.

I have only one memory of actually interacting with someone with Down syndrome.  I was maybe 9 or 10 and we went to this big party every year.  The kids would all be set loose upstairs while the parents were downstairs.  More often than not, we would start a huge game of hide-and-go-seek.  There was a girl there with Down syndrome who was close to my age.  We convinced her to stand really still like a statue and that would be a good hiding place.

I can remember wondering why she believed us and I couldn't really figure it out.  Now that I think back on it, I am embarrassed about my actions.  Sure, we included her and let her play our game.  But we treated her like the little sister you didn't really want tagging along but Mom made you play with.

Now when I see an individual with Down syndrome, I feel like I want to acknowledge them with a little "I'm part of the club too".  Of course I don't because that would just be odd.  I'm so proud of my buddy and feel honored to be his Mom.  I hope that the next generation of kids growing up will think nothing of having a friend with a special need and having kids of all different abilities a part of the classroom.

letting go

Monkey bear started preschool this week.  I'm not sure who was more traumatized... her or me.  She was so brave and put on the excited face.  But when it came time for us to leave her alone, she just lost it.  First there was the look of terror in her eyes followed closely by the quivering lip.  Then came the pleas of not to leave her with big crocodile tears.  The worst part was the heart wrenching screams as I ran out of the room as quickly as possible.

When we picked her up she said she had so much fun and wants to go back.  Monkey bear claims she won't cry again.  She talked about how she took big breaths to calm herself down and did a Caillou puzzle with tears still in her eyes.  Being a stay-at-home-mom without a consistent babysitter, she rarely gets left with anyone.  I know that she needs to spread her wings and rely on herself more.

I never imagined how hard it would be for me to let go.  I understand that the most important job of a parent is to bring out the best in your child and then set them free into the world.  Letting them discover their place in the world is as vital as making sure they eat their fruits and veggies.

We were on vacation recently.  Monkey bear was too scared to sleep in the bed by herself so she climbed into bed with me.  I must admit, I don't do much better sleeping in a foreign bed than she does.  While I was laying there, feeling like a child myself, I just stared at her amazed that I was her Mom.  How could this little child rely on me so much for her safety and comfort when I couldn't even comfort myself?  How on earth did I end up being in charge?  It was a surreal moment that quickly passed.

I love that my children can constantly amaze me.  I love that look in their eye when you can just see the love bursting out of them.  No matter how many long days there may be when I don't think I can make it for even a minute more, every second is worth it.  Monkey bear may have 5 hours each week away from me followed by years of school and eventually moving out on her own.  But I know that there will always be a part of her that loves me in that special way reserved for your mom.

worries

I was prepared for motherhood in all the practical ways.  But there were a few things that caught me by surprise.  You can never imagine how your heart will grow with each child.  People always tell you that you will never be the same, but the words don't even come close to how it feels.

Along with all the love comes a boat full of worries.  I never knew how each fever and cough would tear me up inside.  For me, the anticipation of each illness is so much worse than the reality.  I have a feeling that monitors are the work of the devil.  I can't go for more than a few minutes not being able to hear them. 

There are the daily troubles.  Are they getting enough sleep?  Is their diet balanced enough?  Should I be doing more art projects or playing more board games?  Why are they crying?

I also worry about what the future will bring for both of them.  Will they have broken hearts?  Will they find their place in this world?  Will they find true friends?  Will they live long, healthy lives?  It's so hard to imagine these precious little ones as teenagers trying to navigate through peer pressure.  Will they be prepared and have enough confidence to make it through?

Then there are the worries specific to my buddy.  Will he be able to live independently?  Will the kids be mean to him?  Will kids be mean to monkey bear because of my buddy?   Will it hurt so much more when he is teased as a teenager?

I'm not sure if my heart will every stop feeling unsettled.  Is there ever an age when your kids are free from your concerns?  I know, even at my ripe old age, when my mom comes to visit, she tells me when it is time to go to bed. 

new moves

My buddy has developed some new moves.  His early intervention therapists say some kids need to learn how to play.  As far as I can see, he does just fine on his own... with a big dose of inspiration from monkey bear.  He will feed the baby, hug the baby and cover her with a blanket.  That is until he realizes his true nature and then baby is body slammed into the ground.

My buddy's new signature move is a full body tackle while screaming so hard the veins in his neck bulge.  He is strong enough to knock me over if I'm not prepared and he takes monkey bear down every time.  It really is funny until you are at a playgroup and he thinks little Julia is on the opposing team.  I suppose he could stand to learn some appropriate play.

His sneakiest move consists of starting trouble across the room while you are sitting, say, at the computer.  While you head over there to clean up said trouble, he makes a beeline for your chair.  My buddy can now climb into a chair in the blink of an eye and open 10 windows on the computer before you even realize he's not right behind you.  My signature move now includes sprints across the room to stop trouble and then back to the chair before new trouble arises.

The funniest move my buddy has gets pulled out in a group setting.  If we are at the park and there are a group of adults sitting around watching the kids, my buddy will single one out and walk almost all the way up to them.  He will then stop with his legs really wide, tilt his head to the side, stick out an arm while wiggling his little fingers, and say "aaahhhhh".  (that's how we say Hi in these parts)  It never fails to get a smile along with a, "how cute is he!".

I could go on and on about all the things he does.  I think monkey bear said it best:  "He is the one in our family that makes me laugh."