Present

“It’s being here now that’s important. There’s no past and there’s no future. Time is a very misleading thing. All there is ever, is the now. We can gain experience from the past, but we can’t relive it; and we can hope for the future, but we don’t know if there is one.” ― George Harrison

It’s about that time of year again. You know, New Year’s Resolution time. I always do the typical – eat better, save more money, read more. You know the drill. And like all of the resolutions made each year, I pretty much give up on them (or forget I made them) around February (or January).

Lately I started to think about abandoning the resolution thing. It seemed pointless since the resolutions I made last year were a spectacular failure. Plus, with all that has happened in the past few months, I didn’t really want one more thing to do or one more thing to feel guilty about not doing. Who wants that hanging over their head for twelve months?

However, now I decided that I do want to make a resolution.

I’m a “future thinker.” Of course, future thinking also means future worrying. I think it’s partially the pessimist in me. I always imagine the worst. I won’t say that imagining the worst doesn’t come in handy once in a while.

While we were waiting for Mia to be born, Nate and I had the “hope for the best, plan for the worst” attitude. It was the worrier in me that read through tons of information about Down syndrome and the possible health risks and delays that can occur. After Mia was born and Ds was suspected (later confirmed), reality hit and I really started to worry. What now? The diagnosis is only the beginning.

From the time she was born, it has become a “when is the next shoe going to drop” kind of life and she’s only 8 weeks old. Even though day-to-day living has been pretty normal after her bumpy start, I still worry about what will happen tomorrow. Will her heart continue to be okay? Will she meet developmental milestones? Is she eating enough? It’s a mix of normal worries and worries about the symptoms of the trisomy disorder.

The problem is that if I always worry about what is going to happen tomorrow, I’ll miss out on all of the great things Mia is doing today. It could become a really sad life if I continually worry about the next milestone. Not just sad for me, but sad for her as well. She needs to be able to celebrate reaching the summit of one mountain before she starts on the next. The fact is that there will always be one more mountain.

Albert Camus once wrote, “Real generosity towards the future lies in giving all to the present.” With that in mind, I resolve to live in the present and celebrate now and worry less about tomorrow. I know I’ll always think about the future. I know I’ll always worry about what’s going to happen 5, 10, or 20 years down the road, but I have to make an effort each day to forget about all of that, even for a moment, and just be here with my kids, with Nate, and with all the great people in my life. The future will have to wait.

Here’s to living in the present in 2013. Cheers!

Wallowing

“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.

Zihuatanejo

““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.

Christmas

“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!

Determination

“I have discovered in life that there are ways of getting almost anywhere you want to go, if you really want to go.” ― Langston Hughes

It’s a little early in Mia’s life to figure out her personality. She doesn’t cry much. She is a little fussier than her brother was when he was her age. Although, those who knew Fynn as a baby are thinking, “She’s probably still pretty good since Fynn was the ‘magic baby who never cried.’” So, yes, she is still pretty easy. She loves to snuggle and she loves to move.

When Mia was born, she had what many children with Down syndrome have – hypotonia or low muscle tone. It basically means that if you pull on her limbs she has very little resistance. Also, when you would pick her up, she was like a rag doll. The only real treatment for this problem is lots and lots of physical therapy and opportunities for exercise.

You can imagine that this could be a pretty significant challenge in a newborn, especially one with other potential developmental issues. You can put children on their tummies all day every day and bug them until they cry, but if they don’t move or try to lift their heads, there’s not a lot you can do. Encourage, encourage, encourage…that is all. Of course, this was something I worried about – especially when you hear stories of children with Ds not walking until age five.

Enter Ms. Mia Katarina. Her middle name is a derivative of Katherina – the “shrew” from Shakespeare’s Taming of the Shrew (one of my favorite plays), and she seems to have taken on one very important characteristic of her namesake – she’s headstrong. She has a stubborn determination that is quite impressive. I’m sure I’ll rethink this choice of name when she’s 16.

She definitely does not just lie there like a dish rag while on her tummy. She spends the entire time wiggling, kicking, pushing her head up, and even trying to roll over. She rarely cries. Usually it means she’s finally exhausted. My daughter impresses me every day. She started from nothing 6 weeks ago, and all of her hard work and determination are paying off. She’s reaching milestones – something that we didn’t know when or if it would happen.

We’re having a lot of wins now, and I’m thankful for that. It won’t always be the case. But even if she doesn’t walk until she’s five, I know it won’t be from a lack of determination.

I wish I had half the determination that this little girl has. I watch her and think – I complain about an awful lot of things that are completely within my control to change. The New Year is coming up, so I’m thinking about losing the baby weight, getting in shape, getting organized, reading more, and numerous other dumb little resolutions. There are a lot of things that are completely out of this little girl’s control. She was dealt a difficult hand. I’m not sure what is inside her that is making her work this hard when she could just lie there – instincts, personality? Does that go away as you get older? Will it ever go away for her? I don’t know.

But what I do know is this – in six weeks, our little newborn has taught us that “if there’s a will, there’s a way.” I’m excited to see what she does next. And in the meantime, I should stop making excuses.

Going with the flow

“Life is a series of natural and spontaneous changes. Don’t resist them; that only creates sorrow. Let reality be reality. Let things flow naturally forward in whatever way they like.” – Lao Tzu

Over the past year, I’ve asked myself a lot of questions. One of these very important questions was: “How will this new baby affect Fynn?” This question became even more important on November 5. Before Mia was born, Down syndrome was only a potential diagnosis. When she was here and Down syndrome was no longer an abstract concept but reality, I had to figure out how this would change all of our lives – including Fynn’s.

Early in the fall, I listened to an author discuss the challenges of being the sibling of a child with a disorder like Down syndrome or Autism. She discussed resenting the continuous appointments for her younger brother, expectations of perfection placed on her, feeling ignored, and general family hardships that go along with having a child with a disability. It was difficult to hear. What was I doing to Fynn?

Then I realized that I needed to hear that. I needed to be aware of how he might be feeling. It was important for me to listen and be prepared to be sensitive to Fynn and his life, not just Mia’s.

Every day, I look for ways to have special Fynn/Mommy time. Today when Mia was taking an afternoon nap, I gathered Fynn up and we spent time playing games, coloring, reading, and just being together – just me and my buddy. Snuggles, laughter, high fives, and love – pure bliss on a Monday afternoon.

Today was easy, but the reality is that every day won’t be as easy. But we were never promised an easy life. We’re all going to have to adjust, be flexible, and go with the flow. I haven’t always been good at letting reality be reality and going with the flow of life. Our entire family will be getting a lot of practice doing that very thing.

And when I start to worry and lose my nerve (which I usually do) –

“I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.” John 16:33

Normal

Preface: Today was much harder for others – impossible in fact. Praying for strength for the victims and families in Connecticut. I can’t even imagine that kind of sorrow.

Normal

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” Albert Einstein

It wasn’t a good day. My excitement for Mia’s rolling was met with: “it’s not like she’s developmentally advanced or anything.” Sigh. No kidding. Okay, I realize she’s not developmentally advanced. I realize that these are normal things that happen. Did she roll early? Yes. Will it happen again in the next 6 months? Who knows? Here’s the thing. She’s physically capable of rolling. The hours of hard work have paid off. She’s not a limp child lying on the floor.

When you have a kid with a disability, the doctors, nurses, and therapists tell you a lot of good things that your child will be able to do (so you don’t completely freak out, I’m sure), but they also tell you the possible negatives – cognitive delays, physical delays, leukemia, blood disorders, deafness, early onset dementia…I could go on and on. So when your child does something very normal (and maybe a little ahead of schedule), you feel like throwing a party. Most parents throw little parties when their children achieve milestones in general – even with “chromosomally typical” children. (Feel free to smile, it’s my favorite description.)

It’s going to be a long, sad life if we aren’t allowed to celebrate normal. Do I constantly need to be reminded that she’s different? Does she always have to be “the other?” Is that fair? Does she get to be human?

It’s a struggle – a fight between optimism and pessimism, between faith and despair.

There’s so much wrong with today. It’s a cruel, dangerous world. Inspiration is in short supply.

But –

“I do not believe this darkness will endure.” ― J.R.R. Tolkien

Empathy

“Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.” Dalai Lama

When I was pregnant with Fynn, a lot of scary things went through my head – things that could be wrong with him. I think every pregnant woman does this from time to time. I decided that the worst thing that could be wrong with Fynn would be a complete lack of empathy. Of all the things that could be “missing,” what if he was missing a conscience? It’s actually a pretty terrifying thought. People who don’t care about others can do horrible things. Instead of a human, you’ve created some kind of monster. (Now don’t forward this on to pregnant women. It might give them nightmares.)

After Fynn was born, I actually looked for signs of empathy, signs that he had a conscience. It became pretty clear early on that Fynn not only cared about others, but he had a highly developed empathy gene. It wasn’t just me who noticed. When he was in daycare, teachers from the other rooms would come to Fynn’s and give him a hug so he would pat their backs. When the other children would cry, Fynn would put his hand on their shoulder and tell them, “Okay, okay.” There was one time when a boy pushed a chair off the table, and the teacher disciplined him and told him to put the chair back. The child threw a tantrum and cried. Fynn walked over, put the chair back, and told the teacher and the child, “Okay now,” and then patted the little boy on the back. The teachers said it was remarkable for a 2-year-old – he had so much empathy.

Even at the playground, Fynn is very concerned when other children fall or get hurt. He always asks children if they are okay or tells them that they should be careful. He’s quick to point out when a child is sad or upset. He makes sure to tell their parents (who are very polite, even when I apologize for Fynn “helping” them when he’s out of ear shot).

The two weeks after our ultrasound were probably the worst two weeks of the pregnancy. We had told people Mia’s gender and we had told some of our friends and family about the potential diagnosis, but I was having a really hard time understanding it and I was very afraid and sad. I tried not to let my little guy see me upset, but it’s hard when you’re in the house all day long.

One morning when I couldn’t hold in the tears anymore, I rushed to the bathroom and sat on the floor and cried. Fynn was watching a T.V. show so I thought I was safe, but then I heard his little feet walking toward the bathroom. He peaked in and said, “Mommy okay?” I said, “Yeah, Fynn, Mommy’s fine.” He said, “Mommy sad?” I said, “A little.” He came all the way in the bathroom, stood next to me, and rubbed my back. “Okay, Mommy,” he said.

Sometimes, I think about the “master plan.” I like to believe I’m part of some plan of God’s that I don’t really know yet.

Maybe there is a reason we had a little boy with an extra empathy gene before we had a little girl with an extra 21st chromosome.

Optimism

“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” Helen Keller.

Those of you who know me well know that I am not an optimist. I’m probably the worst kind of pessimist – a sarcastic pessimist. Following Mia’s potential diagnosis, I envisioned a life that Nate, Fynn and I would have. It didn’t look very nice. It was fraught with failure, frustration, judgment, angst, and just downright disappointment. The last thing I envisioned was “normal.” I tried to hold out hope, but every day was a battle between my natural pessimism and my faith.

So when Mia was born and I held her, I was surprised by how “normal” she was. Sure, she had some symptoms of a child with Down syndrome. She had low muscle tone, a heart murmur, etc, but she also nursed, snuggled, and cried – everything a “normal” baby does. She made me realize, even after all of my research and preparation, how (for lack of a better word) ignorant I was. She was gorgeous and amazing, not something to be feared. And for those of you who’ve met her, you know, she’s about the least scary baby there is. She’s a content, chunky, healthy little sweetie pie.

She is definitely not what I envisioned. I would not have envisioned a baby, who was supposed to be a limp noodle with no muscle tone, lifting her head and looking around at 2 weeks. I would never have envisioned that my 5-week-old daughter would roll over for the first time ahead of schedule (even for typically developing babies). I never would have envisioned her studying our faces and the world around her with such intensity that it still shocks me a little. I never would have envisioned that she would be “normal.”

With that said, even though my optimistic side is starting to come out a little, I’m also a realist. She has a serious, life threatening birth defect that will cause global delays. So, it’s not a matter of if but when those delays occur. What I do know is that I won’t be the one to set the date. I’ll follow her lead because it’s her life; I am merely her teacher and cheerleader. I will do whatever she needs me to do in order for her to reach her fullest potential – and then I’ll do more. Just like Fynn, I will encourage her to do whatever she puts her mind to, and I’ll be there to support her all the way.

Will she fail? Of course, failure is part of life, but she already has so many cheerleaders to encourage her to try again. Will she be frustrated? Sure, what part of achievement doesn’t come with frustration? Will she be met with judgment? Yes, because it’s a cruel world. Fortunately, she’ll be shielded with love. Will her life be filled with angst? She’s human. All humans are filled with angst – especially teenagers. Will she be disappointed? Yes, but we’ll be there to remind her of her blessings.

I refuse to spend my life or my children’s tempering their dreams and using words like “can’t”. I’d rather do what Einstein once suggested, “Attempt the absurd to achieve the impossible.”

2013 is right around the corner. A New Year is the perfect time to start attempting the absurd.

Grown up

“I am convinced that most people do not grow up…We marry and dare to have children and call that growing up. I think what we do is mostly grow old. We carry accumulation of years in our bodies, and on our faces, but generally our real selves, the children inside, are innocent and shy as magnolias.” Maya Angelou

There are two moments in my life when I remember being truly terrified of growing up. When I was seven years old, I was in bed one night and had convinced myself that growing up meant the end of life. I remember surrounding my little body with stuffed animals and begged God to let me stay little forever. Another moment happened when I was 21 and had just graduated from college. I dropped Nate off at the airport for his flight back to California, and I drove to my new apartment alone. I sobbed for five hours straight. I was terrified of doing grown-up things, like living all by myself and looking for a new job.

Most days I still feel like that 7-year-old kid or the 21-year-old college graduate. But sometimes, I’m pulled back into adulthood and it’s not always a pleasant experience.

Sometimes adulthood has weight to it – real heft. When I first heard the words “Down syndrome” from the perinatologist, I felt like someone had climbed onto my chest. The weight. I knew what that weight was – fear and grief. As the last 20 weeks of the pregnancy wore on, even when we didn’t know for sure, I started to be able to carry the weight. It stopped being so heavy. It was going to be what it was going to be. I know that’s a terrible cliché, but there it is. She was never going to be anyone other than who she was – it was literally written in her DNA. She was born and I was okay. She was mine and I was hers.

But there was one moment in the hospital, when the fear of adulthood crept back in. It was the middle of the night, and we were alone together. I was looking at her sweet little face and I felt pure terror. Not terror of her or her diagnosis or that I didn’t have my perfect child. I had stopped caring about perfect months before. I was terrified that I wasn’t good enough, and that she deserved someone better than me – a real adult.

I now realize that Mia just needs someone who is going to understand. Growing up is going to be difficult, full of challenges, and downright terrifying. We’ll embark on that together. But maybe Maya Angelou is right and she’ll just get a version of my 7-year-old self instead of a grown up. Maybe that’s okay.

We’ve all needed to pull the covers over our head and beg for time to stand still now and again.