4 0 2

402 days. 402 (plus or minus… mostly minus) posts.

Tag: Down Syndrome

Day 880: Swings, Songs and Advice for New Moms

Almost three years ago, one of my favorite friends and mentors had a baby boy. His name is Colin, and he has always been one cool cat, even at seven months old when I first blogged about him.

Because it’s been a few years (no idea how that happened), I asked Colleen if I could interview her again – this time, about about motherhood, wifehood, babyhood, toddlerhood, and what she would say to a new mother who receives the same diagnosis for their baby that was given to Colin.

Colin

Colin is a measured performer and a quick study. He can figure out what makes you laugh and then milk the situation before you even know what’s going on. I asked Colleen what Colin’s personality is developing into, and what she sees in Colin of herself and her husband, Chris.

“Reading and entertaining rank high for Colin. Book was his first word. I think he would spend the entire afternoon being read to, if he could. And while you are reading to him, he will inevitably make a funny face, snort or try to get you to smile – that’s the entertainer in him.

He’s a huge fan of Louis Armstrong. And he loves to swing, be surprised,” [Interjection from me: it’s true – he loves to be surprised. Whereas I’d probably cry and pee my pants a little, he just laughs.], “sing along to any number of songs, and play ball. He throws better than I do.

Colin Swinging Down Syndrome

Case in point.

He has Chris’ sense of perfection. Before he was walking, he would practice pulling himself up in hiding before he did it in person. We would watch him on the baby monitor. He has the persistence to keep trying something over and over until he is happy with it.”

As a nearly three-year-old, Colin walks, runs and takes exuberant leaps off one of the chairs in the living room (which has since been turned around to face the wall as a preventative measure). He’s also one of about 400,000 people in the U.S. living with Down Syndrome.

Advice

The original diagnosis was an admittedly scary and difficult one for Chris and Colleen. They received it moments after Colin was born, and they weren’t sure how to react. True to form, they made it through the initial tumbling and came out smiling on the other end.

“I knew Chris would be a good dad, but there is a whole other level of falling in love with your partner when you see them as a loving parent. I couldn’t really understand what that looked like until I saw it firsthand.”

Knowing what she and Chris know now, I asked Colleen what she would say to new parents of a baby with Down Syndrome. 

“Recently I read something that really rings true, so I’m going to steal the thought. If you were to go to a new parent and tell them all the things that would go wrong in their child’s life – like, when they are six months old they’ll get really sick and you will be up with them for nights on end trying to figure out what’s wrong. Or at seven, they’ll fracture their arm jumping off the bed. Or their best friend won’t be their friend anymore when they’re 11, and it will really hurt their feelings – If you told a new parent all the bad things that would happen in the future, instead of helping them be overjoyed with their new child, they would be scared to death. How can a mom protect her kid from that? But that’s not how it happens for most new mothers, thank God.

We were told (or read on the Internet) all the things that could/might happen to Colin throughout every stage of his life. But the truth is, some might happen and some might not. So I would tell a new parent to throw all the opinions, presumptions and thoughts aside and know that someday very soon, you will not see your child as any different.”

Colin Selfie Down Syndrome

Colin’s first selfie. JK, mom took it.

She also offered some incredibly sage advice to all the new mothers of all the babies, regardless of their situations:

  1. “Go easy on yourself. In the beginning you can become delusional due to lack of sleep. Everyone will say ‘sleep when the baby sleeps.’ If you can do that, great. If not, then do what you can do to relax. I couldn’t sleep when he slept, and I beat myself up for it over and over.
  2. Find a small group of people you trust, who will listen and talk with you. Thankfully, I had a handful of people who would answer the phone or text me back at 3 am. Remember that someday these people are going to need you to return the favor.
  3. If you don’t have a doctor (or occupational therapist or physical therapist) you trust, then get out of your current relationship and find a new one as soon as possible. And don’t be embarrassed to do it.
  4. Take time to allow yourself to welcome this little one into your home. This baby needs the same things from you any other child would need.
  5. Surround yourself with the people who look at your child the way you want the world to look at your child.
  6. Remember that people mean well. Really. I’m sure I said some stupid things to new parents when I didn’t really know what being a new parent meant. (They either forgave me or were so tired they weren’t even listening.) People will have opinions about your child and what you are doing/should be doing/shouldn’t be doing, and so on. That’s ok. They want to support you any way they know how, and they probably have no clue what is going on in your life. So listen, say thank you, and then call someone in the group from #2 to talk about it.
  7. For the proud new mamas of a child with Down Syndrome, you may want to run and hide right now, and it doesn’t feel fair. But once you come to terms with reality, just know that the child in front of you will blow your mind someday soon. Their capacity to reach their goals is the same as any other child when given opportunities and support.
  8. Remember that your child will be their own person even if they share the same diagnosis as someone else. People will make generalizations, like, ‘Oh, those Downs kids are so stubborn/sweet/easy/loving, etc.’ Is that true of Colin? Sure, sometimes. It reminds me of when people used to assume I played basketball because I’m tall. My son and your kid will be different from each other. Will they share similar characteristics? Sure. Do I share similar characteristics with some WNBA players? Sure.”

Right? Sit with that advice from my wise friend and pass it along to the people in your life who need it. And if you want to learn more and support people with Down Syndrome, check out these great organizations:

Ruby’s Rainbow
Changing the Face of Beauty
Think College

Day 48: The Ordinary Baby

Colleen, one of my most amazing friends, recently had an amazing thing happen to her. She had a kid. Since she’s so amazing and her family’s story is so amazingly lovely and inspiring, I asked her if I could interview her for this blog. She said yes.

The Family
Colleen is a dedicated proponent of the arts, one of the kindest women I know and is beautifully tall. Chris is not taller than his wife (even though I always think he is), and is thoughtful, smart and a true gentleman. Colin is seven months old. He likes avocados, hates peas and has really strong feet. He also has a huge family, as Colleen puts it, “by blood and by friendship.”

Parenthood
I asked Colleen how parenthood has changed their lives. Her response:

 “I could probably be more profound with this if I could remember what I was like before. All the clichés are true—you become less selfish, the world has more meaning and you have a whole new prospective on everything. You use a new vocabulary, and at times it feels like you are speaking a new language. It’s also challenged us in a way we never really understood before—and that challenge begins anew every day. I’ve always been sensitive, but parenthood has amped my sensitivity up by about 1000%.

And although I’ve never been particularly crafty, I have a newfound interest in crafts. The idea of forming memories and traditions through an act of creating something with my family has become even more important.

In addition to being one of the coolest babies I know, Colin also has Down Syndrome.

Colleen and Chris received the diagnosis right after Colin was born and the news shook their little family quite a bit. Reflecting on Colin’s birth, Colleen said, It hurt so badly in the beginning. While it’s embarrassing and humbling to share, it’s okay now because we made it. And it is so good.

Colin and the bearColin and the bear.

Down Syndrome
From Colleen:I never in a million years thought this would happen to us. And my preconceptions of what ‘this’ was were based on my own misconceptions. Colin is just like any other baby. He will grow into being a toddler like any other toddler, and will grow into a young adult just like any other young adult. He will have the same feelings, thoughts, happiness and sadness that you and I feel. Having Down Syndrome just means he might reach milestones later than his peers. It doesn’t mean he won’t live, love and fulfill his dreams just like any other person who is given the opportunity.

And I don’t say that with blinders on because I’m his mom. I say that because I see it every day. I had so many doubts at first about all of this, and about my family’s ability to live in this world where people use words like ‘special needs.’ However, I can say at this point that our world is no different than anyone else’s, except now we have a little man with big hair.

Colin and my sunglassesColin, his big hair and my sunglasses.

The Zoo
I asked Colleen what she and Chris are looking forward to doing as a family. She said:

 “In addition to building our own traditions, we want to do what everyone wants to do. Travel, go to the zoo (Chris said that; I hate the zoo), Halloweens, Christmases, Sunday hangouts with our friends and family, etc.

I’m happy to say that Colin and I already have a parent-approved date scheduled for his second birthday. I picked his second instead of his first mostly because I need a year and a half to plan (I was going to take him to the zoo).

To read more about another family raising a beautiful kid with Down Syndrome, check out the blog Enjoying the Small Things.

Colin and the treeColin, after he defeated the bear and my sunglasses and escaped into the Christmas tree forest.