A Strange Kind of Anniversary

We pray for big things and forget to give thanks for the ordinary, small (and yet really not small) gifts.

- Dietrich Bonhoeffer

Here at the Wicker house, we love to celebrate.  We celebrate birthdays and holidays like everyone else but also weird things.  We have celebrated dirty diapers, because there was a time when we did not know this would be possible.  We celebrate when the cardiologist says, You're doing so well that I do not have to see you guys back for another six months.  And we celebrate each and every milestone.  This month those milestones have been pulling to standing, crawling the right way, and several new words and signs including her favorite, the word no. This week we are celebrating something very special: a full year without any hospitalizations.  That, my friends, seems like a miracle.  It is something we did not dare to even imagine when we were in the thick of it.  Happy One Year with No Hospitalization Anniversary, Willow!

Above is a picture of Baby Girl one year ago when she was last hospitalized at Greenville Children's Hospital.   Below are some of Willow's most recent pictures.  What do we do with our time now that we are not spending it in hospitals?  Well, you know, dress up like Star Wars characters, go to the beach, and generally act sassy.

Willow-palooza

This past Saturday was such a fun celebration of two birthdays, an anniversary, and the family and friends who share this life with us.  You all have loved us so well in the hard times and the happy times.  Cheers to happier times!

Thank you to mom, dad, Barbara, and Roger.  They are not pictured here, because they were behind the scenes making sure you were all fed.   Thanks to Karen, Kelly, David, Sherri, Veronica, Allie, Mary, Thomas, Cody, Andrew, Fitz, Monica, Mary, Martin, and Emily who traveled from out of town for the party.  Thank you, Margery, for traveling the farthest to come to the party (all of the way from Chicago) and for bringing Nanee, who brought the class of the party up at least five notches.  But don't worry. I brought it down five notches so it really all evens out. Thank you to Sundeep and Bruce for manning the grill.  Thank you to Rebecca and Summer for taking hey, could you help me figure out where I can buy cupcakes and turning it into an amazing, homemade cupcake cake.  Thanks to Aaron for brewing Far, Far Away IPA.  It was delicious, and you know it was a good party when you find a beer bottle in a tree the next morning.  Thanks to Priscila and Rachel for bringing a pinata and for teaching us how its done.  Thank you to Brandi for making sure I took pictures this year.  Thanks to Christy for the pictures, the watermelons, and for bringing a teenager who could teach me the wobble. Thanks to the Hartes for hosting my family in your home.  Thank you to my awesome neighbors who tolerate us taking over the block for one day a year.  I promise we will do our best to be quiet and boring for the rest of the year.  And thank you to all who came out and for not making fun of us too much for throwing such a ridiculous party for a two year old.

And can I just end by saying that my people have the prettiest babies? I mean, for real, y'all.

The Lord has done great things for us, and we are filled with joy. (Ps. 126:3)

Behold, children are a gift from the Lord. (Ps. 127:3)

Thoughts on Down Syndrome Two Years Later

 Before I post about the one rockin' celebration that is happening next week for Willow's second birthday, Josh's 30th birthday, and our 6th wedding anniversary, I thought I would touch on Down Syndrome two years later.  There was a time when I felt sure I would think about Down Syndrome every second of every day for the rest of my life.  I was convinced that, not only would I think about it, but that I would never stop feeling sad about it.  Surprisingly two years later I think about it much less than I had anticipated.  And these days, I often do not think about it at all.  And when I do, I rarely feel sad.

See http://www.beadsofcourage.org/ to read about what these beads represent.

The times that I feel sad are the times when I forget to let Willow take things at her own pace.  I allow comparison and impatience to rule my heart, and I start comparing her growth and development to that of her peers.  I forget that with parenting, as with most places in life, comparison is the robber of joy.  I have to tell myself in these moments, slow down, take a deep breath, what is the rush?  Celebrate the steps no matter when they come. Stay hopeful, work hard, but chill out.

There are other times when I feel sad about it thinking of the hardships she has faced already and the hardships that are likely to come.  I feel sad when I hear the word retard used casually and flippantly. I feel sad when I think about the possibility that someone might one day make fun of her, leave her out, or underestimate her because of the way she looks. Then I remember that I will hopefully raise her to be tough. Hell, she is already tough.  I will raise her to challenge people's stereotypes and love people even when they do not deserve it, because that is what Jesus did. I will work on educating people that retard is not a word to be used as an insult. And besides, I'm pretty sure all of her Ukrainian cousins will beat up anybody who messes with her, and I promise you don't want to mess with Eliza.

Though occasionally I still feel sad, there are many days when I don't even think about Down Syndrome at all.  I forget all about it, because it is only one part of our family.  It does not define her, and it does not define us.  She has beautiful blue eyes.  We have no idea where they came from.  Josh likes to say the mailman.  She has a winning smile, a great sense of humor, and loves dancing and music.  She has long eyelashes like here dad.  You're welcome, Willow.  She has straight, thin hair like her mom.  Sorry, girl.  And she also has a third copy of the 21st chromosome.  Willow eats, laughs, and plays, just like other children.  Just like other families, we take walks around our neighborhood, cook dinner, and go to the beach.  We have some extra challenges but who doesn't?

I used to think I would change it.  That if I could, I would erase Down Syndrome from our family.  I now feel differently.  I would, hands down, change out her heart for another heart that had never been broken. I would trade in her bowels for normal, working bowels. I would trade in all of the medical problems, absolutely.  But would I take away the Down Syndrome? That would be like saying I would trade her in.  It would be like saying I want a different baby, and I don't.  She fits perfectly in our family, and we love her just the way she is. Often times I think that other babies are the ones missing something.  Maybe we are all missing something.  We are the ones missing those beautiful, exotic almond-shaped eyes, extra neck skin for snuggling, or the cute extra space between her toes.  We are the ones who are missing the ability to smile, not just with our mouths, but with our whole entire face and dance without inhibition.  We are missing that extra sweetness, that extra cuteness, and that extra charm.

Is it hard, yes.  Would we change it, no.  Josh and I have both been changed forever in all of the best ways.  We are the Wickers.  We are a bit eccentric (I am pretty sure that is the polite word for weird), but as many of you know, we were like that long before Down syndrome entered our lives.  I will keep talking about Down Syndrome, not because it defines us, but because I hope to help readers think about people with Down Syndrome in a way that they have not before.  I hope to help people realize that folks with Down Syndrome have so much to contribute to society.  Read about Christian Royal, a potter (www.christianroyalpottery.com/).  Read about Tim harris, a restaurant owner (http://timsplaceabq.com/).  Read this letter where John Franklin Stephens smokes Ann Coulter on the word retard (http://specialolympicsblog.wordpress.com/2012/10/23/an-open-letter-to-ann-coulter/).  But I also hope that we realize that a person's value is not measured by their contribution  to society but by their humanity alone.   It is measured by the fact that people with Down Syndrome, like all of us, are made in the image of God and beloved by Him.

Happy birthday, Willow.  You are the best thing that ever happened to your dad and me, and you could not be more loved.

Love always protects, always trusts, always hopes, always perseveres.

(I Cor. 13:7)

What makes you different makes you beautiful.

(Yes, this is the Backstreet Boys, but I thought it was pertinent.)

Ode to the Stay at Home Dad

Alot gets written about stay-home-moms.  I love stay-at-home-moms. You are my friends and sisters, and I respect your choice.  I thought I would write a little something about a less-common choice, the stay-at-home-dad.  When Willow was born, I was a resident physician.  I could not quit my job to care for Willow. We were up to our eyeballs in school debt, and I had the insurance. Also typical childcare would be difficult since I worked erratic hours and Willow had so many medical needs. Josh, at that time, was working as an animal removal specialist for a company.  He loved his job, and was REALLY good at it.  The company still calls him periodically to see if he will come back, and all of our family and friends still call him for consultations.  However, we decided together that it would make most sense for him to stay at home.  And so he did.  Like a good husband and father, he did what it took to provide for our family.  And in our case, that meant staying at home with our baby.  It is not traditional or normal, but we have never claimed to be either of those things.  It is not for everybody, but it works for us.  This post is for you, stay-at-home dads. I think you rock, and here are a few reasons why.




1.) SAHD's don't sweat the small stuff.  My child may not get out of her pajamas all day, and her hair may be a mess.  She definitely does not eat organic, and her bathing is erratic at best.  But she is clothed (most of the time) and always fed.  She is bathed (enough).  Her hair will probably always be a challenge.  But she's always happy and having a good time, and THAT is what matters. The pictures below may have been taken in the middle of the afternoon, and my kid may still be in her pajamas.

2.) Your kids learn all sorts of cool new tricks.  For instance, being married to a nerd, I came home one day to find that my daughter had learned a new trick.  What do zombies say, Willow? Without missing a beat, Willow would respond with a perfect zombie imitations.  This is what happens when you leave a man with a baby.  She cannot say mama, but she can imitate a zombie.

3.) SAHD's make it look easy.  When I go out, I bring a diaper bag packed to the brim, my purse, and whatever else I have chosen to bring with me that day.  I look like I'm packing for vacation, and I always look awkward.  Josh throws the baby on his hip, a diaper and a few wipes in his pocket, and he is good to go.  Easy, peasy.

4.) There are no daddy wars, at least not that I am aware of.  Perhaps it is because, at least where we live, there aren't many SAHD's.  But perhaps its because they do not find the need to compete with each other like moms sometimes do.  They are way too cool for that.

5.) SAHD's can make anything look manly.  Anyone can make a tool belt or a gun look manly.  But our guys can make a baby, a sippy cup, and a diaper bag look manly.  Now THAT takes skill.

6.) It is always good for a man to provide for his family no matter how.  For some men this means providing monetarily. For some men, this means providing the childcare and the majority of the child-rearing.  Either way, we thank you.  We need you, and our children need you.

Well, that's all for now.  Stay-at-home-dads, this is for you. Keep rocking it.  Our kids are lucky to have you.