On Henry's First "First Day"

I am about to send my two year old to pre-school. Just like so many other parents who want to give their toddlers a little head start. But our experience has been a little different from most.

When I tried to sign my child up for the two year old program where his brother went to school, they told me no. Instead, they handed me a brochure for a special needs playgroup.

They didn't know my son. They didn't know his name. They just knew he had Down syndrome, and decided he wasn't a good fit for their school. I was given a few excuses. Things like "We don't have the resources" and "We don't have a special education teacher here."

As a parent of a child with Down syndrome, you know there will be battles. There will be times when the world decides your child is not worthy of what others are. They will take one look at your child and without knowing a thing about them, they will decide that your child does not belong.

I can't tell you how heartbre…

Our Sleep Study Experience

Sleep studies are very common in children with Down syndrome, and are recommended for every child with Ds before age two. It is estimated that as many as 60% of children with Down syndrome will have an abnormal sleep study by the age of 4, according to the NDSS. Commonly, obstructive sleep apnea occurs in our children due to enlarged tonsils and enlarged adenoids. Because sleep studies are so common, I figured I would share my experience with ours. While it is just one experience, I am hoping it will help explain what to expect.     Our sleep study was at Yale Children's Hospital in their Pediatric Sleep Study Center. We arrived for 7pm, and met our nurse Ana at the door. She showed us our room, which was one of two or three in the wing. It was a private room, right off of the nurses station. Inside the room were two beds. There was a television and a camera on the wall opposite the bed. There were two bathrooms and a fridge for patient food where I put Henry's milk and …

21 Reasons Why Life Is Better With You, Henry

21. When I look over your crib to reach in and get you in the morning, you immediately smile and start our day filled with happiness.
20. You always score free cookies from the bakery at the grocery store with your smile, and you always share a bite with me.
19. You have turned your big brother into a caring cheerleader who at least once a day calls me in to the room to see awesome new trick you are doing. The other day, he celebrated you turning the page in a book all by yourself. He is a remarkable three year old and I know you have influenced him already.

18. You have taught me to be tough and fight for what really matters in life.
17. Your Down syndrome diagnosis has brought us into a loving circle of families and given us some of our greatest friends.
16. You still love being rocked and held and it's been so wonderful to have the snuggles.
15. You showed me that I have the strength to sing you to sleep on an operating table, and showed me that you have the strength to hand…

What is Success, Anyway?

Recently, we spent some time with another family with two children, one of whom has Down syndrome and is the same age as Henry. I don't often feel comfortable enough to share my fears about our future, but I did with them. I told them that I am really scared. I see many other families with kids with Down syndrome sharing their day to day lives truthfully. They share that vacations are hard. They share that school is hard. There are countless meetings. They share that hospital bills are bankrupting them.
They share that they are tired, and that the challenges their children with Down syndrome present make life harder. Are they entitled to share their opinion truthfully for all to see?
Without a doubt. 100%. Does their reality scare and worry me about my future and the future of my family?
Without a doubt. 100%. I worried aloud about my son's future successes -- or possible lack thereof. I worried aloud what this meant for our family and for our other son. I shared all o…

To Henry, On Your First Birthday

Dear Henry,
     I have this tradition of writing letters to Eli on his birthdays to tell him how much he amazes me each year, and how happy I am to get to be his mom.
Now, it is your turn.
You are one! This has been the fastest, wildest, hardest and most wonderful year of my life.

To see what you have gone through in your first trip around the sun while still managing to be happy and easy going is humbling. Your strength and bravery is inspiring. You smile during blood draws,  you wake up from surgery with a smile on your face. I never knew an infant could be my hero until I met you.
One of your many echocardiograms this year.
After your adenoidectomy and ear tubes. You did so well!
You make me a better person every day. I am more patient, kind, grateful and happy because you joined our family.
You have also helped your brother to become an even more caring person. I remember the night we brought you home, trying to read a book about brothers to Eli. I couldn't get through it;…

You Can't Pour From An Empty Cup

Being a mom is the hardest job I have ever had. I have struggled with juggling it all -- my career, finding child care, doing the laundry, cleaning floors, grocery shopping, cooking, paying bills, lighting candles and spraying Febreze so my house doesn't smell like cat -- and raising two tiny humans on top of that. You know, humans who need food and drinks and baths and pull every single toy out while you try to take a four minute shower. One of my tiny humans happens to have multiple appointments per week that I am in charge of coordinating and getting us all to. Usually conveniently right around nap time.
You get the idea. You know what I'm saying because this is probably your reality, too. Even if you are one of the lucky ones with a very supportive partner, it can still be completely and totally overwhelming.
You give 110% of everything you have to everyone around you -- to your kids, to your partner, to your colleagues -- and there's never much left for you. Maybe at…

Overhearing the "R Word"

My day started innocently enough. I woke up with the kids, fed and entertained them. Had a few extra minutes so I decided to take care of an errand. I stopped in to our local animal hospital, VCA Shoreline in Shelton, to pay a bill. One of the techs at the front desk used the word "retarded". Her coworker told her she shouldn't use the word, and she said "No, I dont think disabled people are retarded. I'm ACTUALLY retarded."What does that even mean? That doesn't make any sense, and it's not the least bit funny.Retarded is not an acceptable synonym for ANY word. You use it instead of stupid, dumb, lame, pointless. Is that what my child is? No, he is absolutely NOT.I'm shaking I'm so mad. I'm mad at myself for not explaining to her how hurtful that word is to me, my family, and millions of others around the world. But I dont think I could have done it without yelling or crying....neither of which would have been very helpful. I didnt catch…