Attempting the Absurd

“If you were born without wings, do nothing to prevent them from growing.” ― Coco Chanel

I just watched my daughter climb over her boppy to get a stuffed monkey in her gym. I had to rescue her because she face-planted into her gym, but she came up clutching the monkey and promptly stuffed it in her mouth. A far cry from what I expected at 3-months from my daughter born with Down syndrome. So I decided to make a list of the things she’s doing now. I grabbed the list from What to Expect the First Year. So here you go – from our first three months of attempting the absurd to achieve the impossible.

By three months, your baby…should be able to:

• On stomach, lift head 45 degrees (YES)

…will probably be able to:

• Laugh out loud (not yet…but she coos when excited)
• On stomach, lift head up 90 degrees (YES)
• Squeal in delight (not yet…but so close! Does cooing in delight count?)
• Bring both hands together (YES)
• Smile spontaneously (YES)
• Follow an object held about 6 inches above baby’s face moved 180 degrees with baby watching all the way (YES)

…may possibly be able to:

• Hold head steady when upright (YES)
• On stomach raise chest supported by arms (YES)
• Roll over (one way) (She’s done it twice from her back to her front. She rolls to her side.)
• Grasp rattle held to backs or tips of fingers (YES)
• Pay attention to an object as small as a raisin (YES)

…may even be able to:

• Bear some weight on legs when held upright (YES)
• Reach for an object (YES…the evil elephant and her dolly. And a stuffed monkey, apparently.)
• Keep head level with body when pulled to sitting (YES)
• Turn in a direction of a voice, particularly mommy’s (YES)
• Say “ah-goo” or similar vowel-consonant combination (Not quite – says, “Ahooooo”)
• Razz (Not yet.)

More alike than different.

Love this little girl. My rock star.

Happiness

“You will never be happy if you continue to search for what happiness consists of. You will never live if you are looking for the meaning of life.” ― Albert Camus

Watching Fynn kiss and hug Mia before bedtime.

Snuggling with Fynn in the big bed when Nate is traveling.

Waking up to Fynn asking, “Where’s Mia?”

Mia’s smiles and coos.

The baby powder smell of Pampers Swaddlers.

Mia playing on my right while Fynn lays his head on my lap and watches a movie on my left.

The way Mia looks at me. Her smile.

Watching Mia learn something new.

Fynn giving Eskimo kisses.

Listening to Fynn say his alphabet. “O is for Boboe.” (He’s a double-reed guy too apparently.)

Reading a book in bed at 2 AM with Mia in her crib next to the bed and Fynn and Nate sleeping next to me. Their soft inhales and exhales.

The excited feeling I get when Nate’s name pops up on my phone.

Talking to my friends on instant messenger during the day.

Reading Shakespearean sonnets to my daughter because she likes to hear my voice and it’s what I like to read aloud.

Reading Fynn’s favorite bedtime stories and laughing when he picks the longest book.

Listening to Nate tip toe around the bedroom in the morning when he thinks I’m still sleeping.

Fynn screaming “Daddy!” when Nate comes home from work.

Just a few of the things that make me happy.

Fear

“No one ever told me that grief felt so like fear.” ― C.S. Lewis

Over the past week, fear started creeping back in again. It started off like little pangs of doubt, but now it has morphed into full-blown terror.

I’m afraid that Mia won’t be accepted.
I’m afraid that people will say cruel things to her.
I’m afraid of the day I have to explain that she’s different.
I’m afraid of well-meaning people who will stereotype and simplify her.
I’m afraid of the day I have to explain Down syndrome to Fynn.
I’m afraid of the next health scare.
I’m afraid of what the delays will mean for our family.
I’m afraid…

“I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning. I keep on swallowing.

At other times it feels like being mildly drunk, or concussed. There is a sort of invisible blanket between the world and me. I find it hard to take in what anyone says. Or perhaps, hard to want to take it in. It is so uninteresting. Yet I want the others to be about me. I dread the moments when the house is empty. If only they would talk to one another and not to me.” – C.S. Lewis

Grief feels so much like fear. When I grieve I don’t listen.

“Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world.” ― C.S. Lewis

Thank you, Jack. I’ll spend today listening.

And then:

“Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin.” ― Mother Teresa

Highlight Reels

“Comparison is the death of joy.” – Mark Twain

It must be that “time of year” because I seem to be having the same conversation with everyone. How do we compare? It’s natural for all of us to look at our neighbors and wonder, “How do I measure up?” or “How does my life compare?”

When the show “Friends” was on, I remember thinking, “How do a coffee shop waitress, a masseuse, and a chef afford a 3 bedroom apartment in Manhattan?” Answer: “They don’t. It’s a set. These aren’t real people.”

I have to say that I think being content with life was a lot easier before social media. Imagine going to a friend’s much bigger house for dinner. You walk in and the place is immaculate. Your host jokingly comments, “Sorry the place is such a mess. I just didn’t have time to clean it after work, my book club meeting, and my yoga class.” You think to yourself, “Wow. My house looks like a hurricane blew through and left garbage all over the floor, and I didn’t make it out of my pajama pants until 3 PM. Plus, I think I wore my socks inside out to work yesterday.” You start to feel bad about yourself and your unfortunate lot in life. Now imagine going to this friend’s awesome house EVERY SINGLE DAY. That’s social media.

What you don’t realize is that she actually had to take the day off of work to clean the place up. She hasn’t been to yoga in a month, and she hated every single minute of the book club meeting because she didn’t have time to read the book between her children’s middle of the night puking sessions. Why not just say that? Because it’s not in our nature to admit that we have flaws. And it’s not in our nature to share those flaws with the world via social media.

On multiple platforms, you can show the world how amazing you are. Sounds great, unless you get sucked into the thought process that “everyone is doing way better than me.”

Sure, some people may have a charmed life and everything seems to go right for them, but the reality is that no one’s life is that charmed. I’m sure you’ve heard the quote by a North Carolina pastor – “One of the reasons we struggle with insecurity is because we’re comparing our ‘behind the scenes’ with everybody else’s ‘highlight reel.”

On Facebook, Twitter, Instagram, etc., I give you my highlight reel. I present cute photos of Mia and Fynn, but I don’t take photos of Fynn’s temper tantrums or Mia’s many appointments or my messy house. Those aren’t pretty. They aren’t fun to talk about. No amount of pretty filters on Instagram are going to make those better.

All of the social media sites are a nice way to stay in touch, but they aren’t a nice way to bench-mark our lives. We rarely let people into our darker thoughts or our truly embarrassing moments. There’s a good reason for that. Some things are private and should remain that way.

Social media sites are small talk at a cocktail party.

And small talk is just fine just as long as we don’t assume that we’re getting the full story. If I spend all day comparing my messy life to everyone else’s Facebook life, I will always come up short.

So enjoy the status updates, the photos, the shared videos and fun quotes, but don’t let the highlight reels get you down. I’m sure your highlight reel looks pretty good too.

Potential

“The man who thinks he can and the man who thinks he can’t are both right. Which one are you?” ― Henry Ford

Since Mia was born, I’ve gotten a lot of “How ARE you?”s from well-meaning people. Most of them are social workers or doctors. I was starting to get a complex. Am I not emoting enough? Do I not look okay? Is my shirt inside out or something? Then I read the “Clinical Report – Health Supervision for Children with Down Syndrome” article from the AAP, Pediatrics, August 2011. On the development checklist they are supposed to “Assess the emotional status of parents and intrafamilial relationships” at “all heath visits.” I mean I’m sure they care and all, but it’s a required question like “Are you putting her on her back to sleep?”

My answer is always the same, “I have mostly good days and some bad days, but we’re doing alright for the most part.” I don’t want to sound too positive just in case the doctors start getting suspicious. Is she in denial? The fact is that it’s the truth. I still have some bad days, but the majority of days are just fine. The funny thing is that those bad days are usually right before a doctor’s appointment. It’s kind of like post traumatic stress syndrome. I’m always expecting bad news. I flinch, but have faith.

And so far things with the doctors have been good. Good cardiologist appointments, good pediatrician appointments. She’s a healthy little girl with a small heart murmur who also happens to have Down syndrome, so I get to exhale for a couple months.

Today we had our first visit with the occupational therapist. She assessed little Mia and was very pleased with what she saw. She gave me some really good ideas about some new things to do with her. We’re still working on building those little muscles. We’ll see her again in two weeks.

We have a lot of appointments this week, so I’ve been answering the “How ARE you?” question a lot.

A long time ago, I watched a mom and her daughter on Good Morning America. Her daughter was a 14-year-old virtuoso musician who was the youngest winner of a violin competition. I can’t remember which one off the top of my head. I know it was one of the big ones. I remember even then being really inspired by her story. When her daughter was born, she had an APGAR score of 1. She had to be resuscitated and had multiple problems. The doctors all told her the same thing, “You need to prepare yourself for the fact that this little girl will be severely handicapped and face significant developmental delays. There are a lot of things she may never do.” She left the hospital and decided she had two choices. 1. Give up and accept the “fact” that her daughter had no real future. 2. Give it everything she had and work tirelessly to maximize her daughter’s potential and love her no matter the outcome. She obviously chose number 2.

I’m not telling this story because I believe that Mia is going to be some kind of violin prodigy one day if I make sure she does tummy time. (Although if she wants to take violin lessons I won’t say no.) Her genetics and the Trisomy 21 are powerful barriers. Many parents and children work very hard and gain very little in results. Potential is nurture AND nature. I’m telling this story because it reminds me daily that her potential will NOT be defined by an article from the American Academy of Pediatrics or any doctor’s or well-meaning person’s “worst case scenario.” I won’t make decisions based on the assumption that she “shouldn’t” be able to do it. There are a lot of things humans “shouldn’t” be able to do, but they still seem able to do them.

Potential is a nebulous thing. While I have faith that Mia’s potential is awesome and she will be able to do lots of things a “typical” child can do, I don’t know that for sure. We’re going to work hard and do a lot of praying. I know that I have a lot of preconceived notions about what babies with Down syndrome can and can’t do. Given the fact that Mia has shattered many of these already, I need to work diligently to make sure that my assumptions about her abilities based on fear don’t become self-fulfilling prophecies. The reality is that I don’t assume Fynn can’t do things. Why would I do that to Mia? Down syndrome is unfair enough for Mia. No need to add the insult of a parent who doesn’t believe in her.

So how am I? As determined as ever, thank you very much. Mia has some playtime/working out to do, and Fynn wants to start learning his letter sounds and do some finger painting.

I better make some coffee.

The boy.

Too smart

Me: Fynn, hurry up. We’re going to be late for OT.
Fynn: (doesn’t look up)
Me: Fynn, seriously, get your shoes.
Fynn: (silence)
Me: Fynn do you understand?
Fynn: (blank stare)
Me: Okay, maybe you’re too tired for Carol and want to take a nap instead?
Fynn: But it’s still light out!! I get shoes.
Me: (mutters under her breath) Doesn’t understand a word.

Eating – our life

Me: Fynn, what do you want for dinner? (Fynn hasn’t touched on thing on his plate.)
Fynn: Hotcakes!
Nate: Would you eat hotcakes?
Fynn: Dum Dums!
Me: You can’t eat Dum Dums for dinner.
Nate: Do you want yogurt?
Fynn: Ice cream!
Me: Okay, I’ll get you ice cream. (Frozen Go Gurt)
Fynn: Peanut butter and apples!
Me: Okay, I’ll get that too.
Fynn: No. M&Ms!
Nate: Wow.

The (stupid) Potty

Me: Fynn, potty break.
Fynn: (screams) No potty break.
Me: Fynn, potty break, now.
Fynn: (just screams)
Me: (firm) Fynn, now. Move.
Fynn: Okay, okay! Be nice!
Me: (rubbing temples)
Fynn: Mommy funny.

The Big Bed

(5 AM, Fynn has been in the bed since 2 AM)

Fynn: Wake up!
Me: Fynn, go back to sleep.
Fynn: Wake up, Daddy!
Nate: Fynn, go back to sleep.
Fynn: Fynn milk!
Me: Just a minute.
Fynn: (whispers in my ear) Fynn milk.
Me: Ask Daddy.
Fynn: (yells) Daddy, milk!
Nate: Tell mommy.
Fynn: Mommy, milk!
Me: Go back to sleep.
Fynn: I can’t. The bed too small.
Nate: Yes, it is.

The bridge.

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” ― Lao Tzu

How I would describe it.

Imagine you find yourself on a rope and wood suspension bridge crossing a large canyon at night. You look down and you can’’t see the bottom. It’’s dark, dangerous, and falling means certain death. You feel alone and exposed, but you quickly realize that you’’re not alone because in your arms is a tiny little baby. You also discover that you can’’t turn back because the edge behind you doesn’’t exist anymore. You have to go forward. You have to make it across and you have to bring this little baby with you.

You have no idea how safe the bridge is, and you’’re pretty sure you’re walking to your own demise. You do have people on the far edges of the canyon cheering you on, but you also have a few people among the crowd shouting, “”You’’ll never make it! You’’re going to die!””

You know it doesn’’t matter how safe the bridge is or if you are going to make it because you have to cross. You have no choice. There’’s no going back for you or for that little baby you’’re holding.

So you start out and you whisper to the baby, “It’’s okay. Be calm. We’’re going to make it.”” You don’’t actually believe it, but you say it more for your own courage than for hers. You keep whispering it over and over again as you step onto each board. You try unsuccessfully to focus just on your feet and not on the large dark hole below. You can’’t even look at the baby because you’’re so terrified of falling.

Some of the boards creak and groan under your steps and you begin to panic because you think that this is the end; you’’ll surely plummet to your death.

You continue on, and you soon find that the bridge is pretty well made. It may sway in the wind and you have to watch your step, but you start to feel safe and your whisper becomes confident and reassuring rather than a desperate plea.

Eventually, the sun starts to rise and you look up from the boards and glance at the baby you’’re holding. You see her loving, trusting, beautiful eyes, her sweet little baby lips, her soft cheeks, and chubby body. You realize that somehow, even though you’’re in the worst of circumstances and even though it might be easier if you had never been stuck on this bridge in the first place, you can’’t help but fall madly in love with her.

You move forward in earnest. You are not crossing the bridge because you have no other choice anymore, but because the love for this little person is driving you on. You are in this predicament together. You want to succeed because you love her. Whether you chose to be there or not becomes irrelevant. You’’d rather be on that bridge with her than on the canyon edge without her.

So you hold her close and keep moving.

Eventually, you anticipate the sway of the bridge. You become an expert at shifting your weight. You look around and realize that in the light of day the view from the bridge is beautiful and expansive. You still avoid looking down into the canyon, and you still feel the sharp pang of fear when a board creaks beneath you, but you know it’’s going to be okay. You’’re going to make it.

Eventually you feel confident that you’’ll reach the other side of the canyon where you’’ll be able to live out the rest of your life without fear of falling, but you’’re not there yet. You keep walking because you know you’’ll get there. You have to get there for her.

Bold

“Begin, be bold, and venture to be wise.” – Horace

January. I looked at Nate this morning and said, “If we made it through 2012, 2013 should be a breeze.” This is the year to be bold.

Last year was full of both happy and sad memories. I was glad to see 2012 end with our family intact; all four of us going to sleep happily and peacefully. But our blessings in 2012 came through smiles as well as tears. I got knocked down pretty hard, but then I got back up. I didn’t think that would be possible on June 12 after the first ultrasound. I felt like I would never get back up again. But I did, and here I am. I have a few scars that might not go away, but instead of covering them up I want them to stay visible forever. Battle scars. A wiser warrior.

I want to be bold this year. It’s not in my nature to be bold. It’s in my nature to be timid. I’m the one who talks a good game, but when the chips are down I’m terrified to act. Not this year. I will be bold.

There is no time to be timid this year – a busy year of work and travel for Nate, preschool for Fynn, therapy for Mia, buying a house, and restarting my freelance career.

Lots of goals, but we’ll go with the flow. We’ll enjoy every day. We’ll live now and hope for the future.

Welcome 2013. I can handle whatever you throw at me. I have the battle scars to prove it.