Little Writer Monkey

“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

“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.

“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.

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.

“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.

“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.

“Man is sometimes extraordinarily, passionately, in love with suffering.” ― Fyodor Dostoyevsky

There are moments when I feel like wallowing in self-pity. I feel like embracing it, draping it over my shoulders, and lounging on my couch using it as a nice warm blanket – all day, every day. I’’m allowed, right?

There are moments when I want to give up. The appointments, the doctors, the therapists, the evaluation of her progress. Normal, delayed? Why can’t she just be a baby for today?

There are moments when I think I was ignored. Prayers went unanswered. I asked and didn’’t receive.

Wallowing.

A few days before we traveled to my parents’ house for Christmas, I was doing dishes and I felt the self-pity rise up out of nowhere. The “why mes” and “why uses” and “why hers” flooding into my head and dragging me back toward that dark place.

I just stood at the sink and prayed, “Lord, why me? Why didn’’t you answer the way that I wanted?”

I walked over to my bookshelf and I grabbed the Bible and said, “”I’’ll just open to any page and take that as your answer.”” Stupid. I know. The Bible isn’’t some kind of Magic 8 Ball, …but I was wallowing.

I opened randomly and my eyes set on:

Romans 8: 18-30

It was a really good answer.

18 I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. 19 For the creation waits in eager expectation for the children of God to be revealed. 20 For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope 21 that the creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God.

22 We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. 23 Not only so, but we ourselves, who have the first fruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. 24 For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? 25 But if we hope for what we do not yet have, we wait for it patiently.

26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.

28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose. 29 For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters. 30 And those he predestined, he also called; those he called, he also justified; those he justified, he also glorified.

““Get busy living or get busy dying.”” – Stephen King, Shawshank Redemption

I’’ve been thinking about this for a while now. I’m sure you’’ve either read or heard of “”Welcome to Holland.”” It’s a fine essay written by a fine woman. The idea is that when you have a child with special needs, it’’s like you were supposed to board a plane to Italy, but you ended up in Holland. I won’’t go into the how that must make the Dutch feel. “Sorry, no one ever really WANTS to go to your country.” Although, Holland isn’’t supposed to be a bad place, just a different place. You get the drift. It’s a metaphor. The nice part about the essay is that it gives parents with children with special needs permission to grieve the child they thought they were going to have. It’s nice.

Here’’s the problem for me – I never really felt like going to Italy either. Both of these places (in the essay) sound so mapped out. Holland? Italy? A normal life or a slower life? Those are my choices? Is there a door number three? How do I get to extraordinary?

I’’d been contemplating life a lot before Down syndrome was even in the picture. I’’m not the person who really knows where they’’re headed. Luckily, my husband is much more focused. I’’m sort of a wanderer who doesn’’t wander. It’’s the introvert/dreamer in me, I guess. The problem was that the day-to-day living was just wearing me down. I didn’’t see any larger picture or any real direction. I was drifting. I loved (and still do) being a stay-at-home mom for Fynn, but what was next?

A month or so before I gave birth to Mia, I had a thought that continues to run through my head even now, “What was I doing before that was so important that this child is going to ruin it?”” The fact is that before this experience I had two choices – either get busy living or get busy dying.” Now I don’t mean dying in the literal sense of the word, but I mean that I have to live or just exist. You either get off your butt and do something or spend the rest of your days sleepwalking through life. I needed a wake-up call and I got one – even if it wasn’’t what I expected.

So door number three. I don’t want to go to Italy or Holland. I want to go to Zihuatanejo. According to Stephen King, it’s a place where you can start anew and everyone is welcome. I think it sounds amazing, and the best part is that I get to make of it what I want. It’’s a place where we can go with the flow and set our own schedules. We can sink our feet in the sand, watch the waves roll in, and enjoy life as it comes. We can make life a beautiful adventure instead of a competition.

So there you have it. I’’m going to hang out in Zihuatanejo and not worry so much about where everyone else is going.

“Anyone who lives within their means suffers from a lack of imagination.” ― Oscar Wilde

I was thinking about the above quote while I was doing last-minute Christmas shopping on Saturday night and adding up the total. Alas. I’m just glad that we’re able to do nice things for our family and our kids, and I do like the Christmas season.

I have to say, though, that Christmas is different once you have children. I’ve never been a “living vicariously through your kids” person. I mean, they have their own lives, so what’s the point of trying to live it for them or your own life through them. I have my own dreams, and they should have theirs. However, it’s hard not to live vicariously through them at Christmas time.

After your 10th or so church performance (it’s not fun to be the 14-year-old in front of church with the 5-year-olds…it’s just not), the 15+ times you’ve seen “How the Grinch Stole Christmas” and “Charlie Brown Christmas,” or when you realize it’s your parents doing the shopping and not some mythical chubby guy in a red suit, the shine of Christmas kind of wears off for a while. For me at least, Christmas was just not that big a deal in high school, in college, and (let’s be honest) during my 20s. It was nice having the time off of work (if I had it) and the gifts were nice, but it didn’t have the same fuzzy feelings it had when I was 5. I still loved singing the Christmas carols in church and celebrating Jesus’ birth, but the rest of it really became more of a hassle than fun. Although, the Christmas when we got snowed in and had to stay in Milwaukee and spent the evening watching “Tropic Thunder” with friends is probably one of the highlights of Christmases past.

Fynn’s first Christmases haven’t been all that exciting. As a 1 or 2-year-old, he sort of didn’t get it. It was fun to play with the toys and see the grandparents, but he didn’t quite get the excitement of the season. This year it’s completely different. He totally gets it and it has been so fun! I’m totally living vicariously through him right now. We’re making cookies, decorating stockings, listening to Christmas songs, playing with the Little People Nativity scenes, and watching Christmas cartoons. It may sound cliché, but he’s making me feel like a kid again. I’m excited to bring him to church on Christmas Eve and Christmas Day, open presents, play in the snow, and just spend time with the family.

It has been a long, stressful few months. It is tough getting used to a new family member in the house – especially one who has the flair for the dramatic (even if she’s the cutest little drama queen ever). It will be nice to put the heavy topics and health questions aside and celebrate together. Besides, it’s important for our family to remember what’s really important about the season – “Today in the town of David a Savior has been born to you; he is Christ the Lord.” You know the rest.

I hope everyone has a nice, relaxing holiday! Enjoy your people, little or otherwise.

Merry Christmas! God bless!