Adoption Announcement

Josh and I are excited to announce the newest member of our family, Rey.  She is four and a half and came to our family via international adoption.  I have always felt I would become a mother in some non-traditional manner either via adoption or foster care.  It has been something that has been a part of my family starting with the adoption of my younger brother when I was in fourth grade.  It changed our family forever.  I believe that vulnerable children are part of the heart of Jesus, and as Christians, they should be part of our hearts as well.

Before we met Rey, Josh and I were able to do some touristy things in Beijing including touring Tiananmen Square and the Forbidden City, attending an acrobatic show, and climbing the Great Wall, which has always been on my bucket list.  Thanks to getting back in shape at the Sweatbox, I did not die in the process.

Look closely.  Those are tarantulas.

We finally met this sweet face, who up until now we had only seen in pictures.  She was more beautiful even than in her picture.  She is sweet-natured, but I can already tell she will be my boundary-pusher.  She can eat her weight in noodles, loves twirly dresses, sings constantly, has a carefree run (think Phoebe on Friends), and belly laughs so hard that sometimes it ends in a high-pitched squeak that sends Willow into laughter starting the whole cycle over again.  We love her so much already and in a way I did not feel could be possible when our hearts were already so full.  We are working on establishing our boundaries and authority as parents while also earning her love and trust.  This takes up most of our daily energy and patience, but it is so worth it.

This is when we found that she can eat her weight in noodles.

Shades are fun.

Painted nails

Pearl River Cruise

Starting to warm up to daddy.

We are thrilled beyond words by the newest addition to our family.  We also recognize that, though adoption is beautiful, it is also always preceded by pain and loss.  We acknowledge and respect this.  Rey's background story is for her to tell if she chooses.  We ask that you respect that and just do not ask.  I hope these pictures will push others to pursue helping vulnerable children, because they are just children who need love, respect, dignity, nutrition, education, discipline, and all of the other things that all our children need.  There are so many opportunities to get involved: foster care, adoption, mentorship, crisis pregnancy care, and improvement of educational/job opportunities for moms.  Find where you are gifted.  And do something.  If you are interested in discussing these things, I would love to share a glass of wine or cup of tea.

I will close with these words from my friend Christy Irons, because I could not say it any better than she does.

I have become convinced that to be indifferent, to do nothing, to ignore, to refuse to act, to stand back and allow broken and wounded populations to continue to suffer... this is the great sin of our lifetime.  We are a generation of emotionally paralyzed people, and thus our behaviors become paralyzed.  We spend so much time waiting for a sign, a signal, a calling... that we forget to DO.  This simply must change.  We as humans, as fellow travelers in this life, in this moment, must work, and work HARD to change what is unjust.  The moment is now.  Stalling has only ever cost us liberties, time, and lives.  The procrastination just isn't worth the price.

GO and DO.
Change the world.
Change a life, and in so doing change YOUR life
Pay attention to the brokenness.
Give generously.
Love big and refuse to look back.
Even when it is hard, you will never regret it.
(see http://thesometimes8irons.blogspot.com/)

There is more to come including photos of the sisters together in some traditional Chinese dresses I bought.  The cuteness may just break the internet.

Thanks my mom and dad for keeping our Willow safe and happy in our absence.  Thanks to the rest of our families for being supportive and prayerful.  Thank you to our Greenwood community as I know you will welcome our newest little with open arms.  Thanks to my beautiful neighbors who took care of our kittens, started our cars, and stocked our groceries.  You guys are the best for this and for resisting the urge to rush over and squeeze Rey the moment we got home.  I know it was tempting.

Seventh Anniversary Blog

I thought in honor of Josh and I's wedding anniversary today that I would write a few of my thoughts on marriage.  Now I am in no way an expert.  That title goes to my parents and Josh's parents who have over sixty years of marriage between the two couples.  This title goes to my nanee and papa who were married over 60 years before my papa passed away.  With that said, I have realized, seven years into marriage, that it has very little to do with candle-lit dinners, jewelry, or grand gestures and much more to do with the every day details of life.

Love is a tiny engagement ring that is better than any piece of jewelry, because it is special and was all we could afford at the time.

Love is proposing with a jeweler's business card, because you were so excited to propose, you couldn't wait for the ring that was three weeks late coming into the store.

Love is getting lice from a patient as a medical student, and having your new husband comb through the knits in your hair.  This is theoretical, of course, because that would just be way too embarrassing to write about.

Love is in the beauty and mess of our daughter's delivery.

Love is laundry, cleaning, cooking, and bills, and having fun together amongst it all.

Love is taking care of a sick baby together.

Love is when you know the good, the bad, and the ugly about the other person and love them anyways.

Love is taking the final step towards being old and lame by buying a minivan together... then fighting over who gets to drive it.

Love is choosing patience and kindness when you feel grumpy, and your spouse doesn't deserve it.

Love is hours in the car together driving different places.

Love is often having to say you're sorry (See what I did there?)

Love is all of the memories added together, exciting and mundane.

This is Josh and I on our first date ever together at Erskine.  My, we were babies!

This is our engagement photo.  It is the only one we have, because we got married eight weeks after we got engaged.  We wanted two weeks, my mom asked me for six months, so we compromised on eight weeks.

This is from our wedding day, September 20th 2008.  I wanted to elope, but people talked me into a wedding by saying, Just picture everybody you love in the same room together celebrating. They were right.  It was the best day ever.

We got married on a Saturday, and I was back to school on Monday.  I studied all of the time, and Josh worked for TruTech to pay our bills while I was in school.  This picture was from my medical school graduation and match day when we found out we were moving to Greenwood.

We have had many adventure including time in Macau, mainland China, and Hong Kong at the end of medical school and time in Honduras during my second year of residency.

Now we are in the middle of the adventures of parenting and adoption. Say no more.

I am thankful that the trials that could have torn us apart have only brought us closer.  After ten years together, one break-up, seven years of marriage, one doctorate degree, three homes, five countries, seven jobs, one baby, and, as evidenced by the photos, many different facial-hair stages, we have a wonderful, ordinary, extraordinary, messy, and beautiful life together.

Happy 7h Anniversary!

Above all, love each other deeply, because love covers over a multitude of sins. I Peter 4:8

Thoughts on the word "Retard"

I would like to share a few words on the use of the word retard. There are people who use the word retard as hate speech.  There are people who use the comparison to a person with intellectual or physical disability as an insult.  These are the same people who will use derogatory terms for people with a different skin color, religion, or sexual orientation.  This post is not for them.  Those people, for the most part, will always be jerks. This is for you, my family and friends.  This is for those of you who would never intentionally degrade or speak derogatorily towards someone with an intellectual or physical disability.  This is for you who would never purposely speak like this towards or about my daughter.  I know this.  I love you.  And if you have used this word around me, its ok.  I forgive you.  I cringe inside, but I forgive you.

I read a blog called the Blessings of Verity (see http://theblessingofverity.com/).  The writer tells the story of her daughter Verity who has Down Syndrome.  She wrote the following words, I told him that I could already tell that this was going to be an opportunity like none we'd had before to extend grace to others.  Other people would be unkind, and we could not allow resentment to build up against them.  We could not allow ourselves to keep track of who responded rightly, who responded wrongly, and who did not respond at all.  These thoughts are perfect.  I am not keeping track or holding a grudge, but I do want you to know how this may affect individuals with special needs and their loved ones.

I have tried to put my thoughts into words may times, but I could not form a better explanation than the one written by John Franklin Stephens, a special olympian and global messenger.  Back in 2012, in response to a debate on foreign policy, Ann Coulter wrote a tweet where she referred to President Obama as a retard.  John penned the response below, and I could not have said it any better.  Please read.

Dear Ann Coulter,

Come on Ms. Coulter, you aren't dumb and you aren't shallow.  So why are you continually using a word like the R-word as an insult?

I am a 30 year old man with Down syndrome who has struggled with the public's perception that an intellectual disability means that I am dumb and shallow.  I am not either of those things, but I do process information more slowly than the rest of you.  In fact, it has taken me all day to figure out how to respond to your use of the R-word last night.

I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you but rose above it to find a way to succeed in life as many of my fellow Special Olympians have.

Then I wondered if you meant to describe him as someone who has to struggled to be thoughtful about everything he says, as everyone else races from one snarky sound bite to the next.

Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low grade housing with very little income, and still manages to see life as a wonderful gift.

Because Ms. Coulter, that is who we are-- and much, much more.

After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me.  You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV.  I have to wonder if you considered other hateful words but recoiled from the backlash.

Well, Ms. Coulter, you and society need to learn that being compared to people like me should be considered a badge of honor.

No one overcomes more than we do and still loves life so much.

Come join us someday at Special Olympics.  See if you can walk away with your heart unchanged.

A friend you haven't made yet,
John Franklin Stephens

Thank you, John.  This is not about political correctness or being a word police.  It is about recognizing that our words have power.  The Bible is full of verses that speak about the power of our words both to build each other up and tear each other down.  Please remember this the next time you hear the word retard or are tempted to use it yourself.

Pleasant words are a honeycomb, sweet to the soul and healing to the bones.  Proverbs 16:24

Update on Willow:
Since I last wrote, Willow has broken one pair of glasses and scratched another.  But we are hoping current this pair is a winner, despite the fact that she takes them off at least thirty times per day, and if she wears them for a good four hours a day, we pat ourselves on the back and call it a win.  She took two very unsteady steps forward the other day and then fell down.  This isn't exactly walking, but we will take it.  She loves swimming, playing in her toy kitchen, imitating her daddy's every move, any music by Meghan Trainor, and the book Little Blue Truck, which is much more tolerable than the Big Red Barn.

What I want you to know about parenting a child with special needs

In April, I went to visit my sister Grace who lives in Haiti.  She has lived there for several years, and this is my first time visiting.  It was very exciting.  She works for Haiti Hospital Appeal, a UK-based organization providing medical care and community support in Haiti.  They have a hospital, a rehab center for adults with spinal cord injuries, a respite center to support families of children with special needs, and much, much more.   I went with two female residents from my former residency program and a female pediatrics attending. In addition to spending some much-needed quality time with mi hermana, the group prepared some educational topics for different groups of nursing students, respite providers, and community health workers.   Most of these were very doctor-y about breastfeeding, developmental milestones, newborn care, prenatal care, and recognizing child physical and sexual abuse.  It was a blast, because educating women is pretty much my favorite thing to do in life.  The trip to Haiti and a description of the beautiful development happening at HHA would be a whole different blog altogether.  But one of the non-doctery things the volunteer coordinator (shout out to Natasha) suggested for me was a talk for the respite providers about what it is like to be a mom (or mum because she's British and cute like that) of a child with special needs.  Although I have been blogging for quite some time, I have never actually spoken publicly about any of this.  I find writing a much easier way of expressing these things, and, besides, I am a bit concerned I might dissolve into a puddle on the floor.  But I agreed to talk about it.  I talked to some other mom friends, and we came up with these.

Proof that the Deal sisters (and Chris) were together in Haiti.

1.) We have experienced loss, the loss of normalcy and of the child we thought we would have.  We will likely mourn.  This is normal.  And it does not mean we do not love our child.

2.) We worry often.  Take the worry that a parent of a typically developing mother experiences and multiply it by one hundred.  We worry about their health, we worry we are not doing enough to help them, we worry people will make fun of them for being different, and we worry we will die and leave them in someone else's care.

3.) We are exceptionally sensitive to judgement.  This one might just be me, but please try not to do it.  What a therapist, a medical professional, or a respite provider can do for an hour a week or for a couple of days may not be sustainable for our family long term.  We cannot do therapy every second of every day.  We get tired.  Our child is tired.  And every child deserves time when they play freely without restriction or correction.  Thank you for understanding this.

4.)  For those in-home therapists/providers, you are entering our home.  This is a sacred and vulnerable place.  We can clean up for guests.  We cannot clean up for you every day of the week.  You see us in pajamas.  You see our dirty dishes.  You see our tired faces.  Thank you for treating this with respect.

5.) We usually know our child better than anyone else.  Especially when children are non-verbal, we learn to pick up on non-verbal cues that others may not.  Listen to us when we say something is wrong.  We are usually right.

6.) We are tired.  We stay up late, get up early, and squeeze therapy in whenever we can.  There are therapy sessions, doctors appointments, tube feeds, medications, and the activities of daily living that often require more supervision.  Every parent of a newborn experiences a period of time where their child is completely and totally dependent on them for transportation, feeding, and diaper changes.  But when your child has long since been potty trained and learned to walk and feed themselves, we often lag behind.

7.) We desire so much to be included.  Sometimes it can feel isolating.  Try to draw us in.  Our hearts burst open into a million happy pieces to see our children playing with their typically developing peers.  We long for as much love, friendship, fun, and normal happiness that is possible for our family.  We want our children to play baseball, attend church, sing to Bruno Mars, eat Chick-fil-a, and have sleepovers with friends.  Anything you can do to help with this is appreciated.

8.) We love our kids.  I think this should go without saying, but I am going to say it anyways.

9.) Everyone is good at something.  Our children are no exception.  This means we hope that you accept them for who they are but also expect them to learn, grow, and contribute.  They need discipline just like other children, because they can learn to behave.  They need to be challenged, because only with challenges and high expectations will they succeed.  People with disabilities are doing amazing things in the world right now, things that years ago were not thought to be possible.  They are writers, poets, athletes, and teachers.  Do not limit them.  We don't.  Have high expectations and see what happens.  You might just be surprised.

10.) Do not feel sorry for us.  Our lives can be hard and are likely not what we expected, but our kids are rock stars.   We experience extreme emotions of both disappointment but also of joy.  I often think that those who love someone with Down syndrome know a great secret.  Those of you who are in this club know what I mean.  Those of you who are not are welcome any time.

I am definitely not an expert on special needs and am aware that every child and family is different.  I am sure these do not apply to everyone, but they are some of the common threads from my family and others I know affected by special needs.  I actually never got around to giving this particularly educational session while in Haiti, but it did allow me time to reflect on what I would want you, my family, friends, therapists, and medical providers to know about what it is like.

Thanks for reading.  Fellow moms, anything you would add?

Willow update: We got glasses just in case she wasn't cute enough already.  We have taken our first beach trip of the year as evidenced by the pictures.  We love, love, love the beach without a feeding tube.  We still are not walking, but we are working hard and staying hopeful.  She likes reading (especially the Big Red Barn, which might be the worst childrens book ever written), going for walks around the neighborhood, pulling hair, and, as always, dancing and music.

For the person whose life looks different than they imagined

I wanted to be a missionary doctor.  I thought I would be working with doctor's without borders or as a doctor for Samaritans Purse.  I thought I would be the doctor on the front lines treating malaria and ebola.  This is why I chose to go into medicine.  This is why I chose family medicine.  And this is why I chose to come to Greenwood for my training.  It is truly what I thought I was supposed to do and what I believed was my calling.  This is not what I am doing.

I am living in a regular old neighborhood in a small town in South Carolina.  I am working as a hospitalist.  I am working to pay off my student loans.  I am trying to follow Jesus in my roles as doctor, wife, mama, and neighbor.  I am coming to the realization that perhaps God has had something else for me all along.  Perhaps it is not adventurous.  Perhaps its not exciting.  Perhaps its not something that anybody will write a book about.  But perhaps that's ok.

Mother Teresa has been quoted saying, Not all of us can do great things.  But all of us can do small things with great love.

 This blog is for anyone out there whose plans have changed.  It is for the people out there whose lives look different than they had dreamed.  This is for you.  Maybe you were made for something different all along.  Most days my life feels beautiful and complete.  But there are still the occasional days that I still long for the life I thought I would have.  Those who grew up in a church background are familiar with the saying, God closed a door.  It is often used to refer to jobs that fall through or opportunities that do not work out.  I have joked before that God did not gently close a door for me to be a missionary in Africa.  He slammed it loudly and forcefully in my face.  But I get it.  I am not that good with subtleties.  On the days that disappointment creeps in, I am often given small reminders of the ways I am being allowed to impact others lives.  It is in words from patients.  It is in words from people I do not know who have read our story and been impacted.  It is in the words of people walking this road of special needs alongside us. It is in the words of strangers who have met my daughter and been touched by her whimsy, her smile, and her strength.

My friend received this email from a lady at her church not knowing that we were friends.  It brought me immediately to tears, because it makes it feel like the difficulties our family has faced are being worked out for good. I read it humbled that even when I struggle with doubt and discontent, God is still able to work.  And I am incredibly grateful that I am not in charge of my own life, because, if I was, I would have missed out on this life.

Read on.....

As I write this, tears are rolling down my cheeks as I think about how gentle and tender the Lord is with me... and I don't deserve it. 

A realtor called the other day and asked if he could bring someone by to see the house this afternoon. Even though I was thinking 'no', my mouth said 'yes' because I know we need to sell our house. But, this is such a BUSY time of the year and today was going to be especially busy....

I wasn't out and out grumpy, but I was feeling stressed and not very thankful about the showing.  Anyway, I did get things in order for the showing, put on some instrumental Christmas music, lit the fresh balsam candle....and had about 20 minutes to relax before the realtor and his client got here. I know now that the Lord gave me those 20 minutes to prepare my heart.

Well, when I opened the door, there stood the realtor- such a very nice man. And, behind him was a man holding a little girl who had Down syndrome.

I was a little disappointed that it was just this young man [Josh] and his daughter [Willow]. His wife was working and couldn't come. Often, this means that the people aren't REALLY seriously seeking a house. [The realtor] told me that he would just follow behind us if I didn't mind showing the house and doing all of the talking. So, I started talking with Josh and showing him around the house. Pretty soon, Willow wanted me to hold her. I did and she was so adorable, playing with my hair, touching my glasses...curious about everything...not shy like most little children.

As I talked with Josh, I found out that his wife has just completed her medical residency here in Greenwood and they are planning to stay here. When Willow was born, he gave up his job to stay home and take care of her. She could not be left for one minute for the first year of her life. Willow is two and is not able to walk yet. She can only say a word or two although she can sign and loves music. Four days out of each week, a different therapist comes to work with Willow.

As I finished showing Josh the house, he put Willow on the floor in the play area while he and I talked for a few minutes about the utilities, taxes, and so forth. When Josh picked up Willow, she was wet all the way through her pants. We laughed a minute as I relayed our having changed diapers in strollers, random bathrooms, backs of cars, and so forth.  Then I said, "Well, at least it wasn't a stinky diaper." To which Josh gently replied, "My wife and I tease each other that we are the only parents on the planet who love [dirty] diapers because we had to irrigate Willow 4 times each day until she was about 1-1/2 and was able to have surgery to correct her inner plumbing." He didn't say it in a begrudging or 'poor, pitiful me' way....he said it with genuine gratitude!

I cannot tell you how I felt standing next to this young man who has given up [so much] for his precious daughter and is thankful for her 'poopy' diapers!! How ashamed I am that I am not shouting "Hallelujahs" from the rooftops for all of the ways that the Lord has chosen to bless me.

I don't know if Josh and his wife will buy our house or not, but I felt like the Lord was saying to me, 'This is the reason why your house has not sold yet. I wanted you to meet them.'

And, I am so incredibly thankful that I did.

Wow!  When I read this, it knocked me off of my feet.  It touched a raw spot in my soul that I did not even know was there.  It reminded me to stop wishing for what could have been and start asking God how He can use me today? How can He use us?  How can we stop wishing for a life different than we were given and start learning to bloom where we have been planted? What small thing can we do today with great love?

This is for the mums and dads of children with special needs who show great love in the small things of therapies, doctors appointments, tube feeds, and medications. What you are doing is important. What you are doing matters. You are impacting and making a difference even if you do not see it.

Help us celebrate National Down Syndrome Day

I started blogging on this day two years ago in honor of World Down Syndrome Day.  You see, March 21st is the day every year where individuals with Down Syndrome are to be celebrated.  March 21st was chosen, because individuals with Down syndrome have three copies of their 21st chromosome.  Clever, eh? Well, please join my family today in celebrating the value, acceptance, and inclusion of individuals with Down syndrome.

My first year, I wrote Willow's birth story.  The second year, I wrote a blog about Down syndrome two years later.  This year, I do not have any inspired words.  I have tried to think of some and have come up blank.   Maybe it is because I am busy and that tends to hamper creativity.  But perhaps it is because Down syndrome has become such a normal part of our lives that it is difficult to imagine life without it.  It is something that has given me new lenses through which to view the world.  It is something that has given me a platform to advocate for individuals with special needs that I never asked for but am so thankful for.

Please spend just a few moments today to honor an individual with Down syndrome.  Do something to honor my Willow.  Do something to honor Adam, Asher, Grace, Andrew, Tim, Caleb, Meera, Ophelia, Brady, Megan, and all of the others who live in your midst.

Here are some suggestions:

1.) Random Acts of Kindness:  Down syndrome advocacy groups all over the nation have decided that they would like folks to provide random acts of kindness around the world in honor of our friends and family with Down syndrome.  This movement is explained here and gets me excited thinking about the impact these acts could have just in 24 hours.  And GO!

2.) Donate to help fund the adoption of a child with special needs internationally through Reece's Rainbow.  Help bring a child like our Willow home to their forever family.

3.) Consider donating to Ruby's Rainbow and help make an individual with Down syndrome's college dreams a reality.

A brief update on Willow:
This past month, Willow had her second set of ear tubes placed, her adenoids removed, and her feeding tube removed.  Everything went smoothly, and we were so happy to bring home a tubeless baby for the first time ever.  She is signing and speaking some words, and, in typical toddler fashion, her favorite word is NO which she says with a little more sass than I am comfortable with.  She is still not walking yet, but we are making strides and working hard with twice weekly physical therapy and a new set of braces we are hoping will help once we can find a pair of shoes large enough to fit over them.   Willow loves Chick-fil-A, Adam Levine, making messes, eating dirt, and playing with other children.

Thank you to those who have loved, encouraged, and challenged our family.  We love you, and I hope to blog more in the future, but no promises.

the Wickers

So in Christ Jesus, you are all children of God through faith.
Galatians 3:26

Sometimes there are bad days

Choices will continually be necessary and -- let us not forget -- possible.  Obedience to God is always possible.  It is a deadly error to fall into the notion that when feelings are extremely strong we can do nothing but act on them. - Elisabeth Elliot

I am in the habit of practicing the discipline of gratitude.  It has helped me keep perspective and my sanity. But I am going to take a break from this for a minute and get real.  Because if I hope to use this blog to help others in my shoes, then I should write it all: the good, the bad, and the ugly.  If you're someone who reads my blog for the positivity, you might want to skip this one.

Most weeks I'm all like, whatever, man. God made every individual unique and beautiful.  We need to embrace our differences.  Well, sometimes being different sucks. There I said it.  And this week, for me, is one of those weeks.  I am not really sure what triggered this.  There has been no major event.  There were no major emergencies, surgeries, or trips to the ER.  Everyone in my family is alive and mostly healthy.

Perhaps it was the two separate instances this week where I noted Willow's peers being mean to her.  I saw them pushing her away and telling her no when she attempted to play with them.  Part of me thought that it was typical toddler behavior.  But then part of me wonders if they know.  Part of me wondered if, even at two and three years old, Willow is a target, because she is different.  It makes me sad.  It makes me want to curse.  It makes me want to fuss at other people's children.  But I do not.  I restrain myself.

Perhaps it was because this week I have been around more typically developing children than I usually am, and it serves to highlight our delays.  I see what things should be like or could be like, and then I start complaining.  I have complained inwardly mostly and outwardly some every time I have hauled Willow's heavy self around on my hip, because I want her to walk so badly.  I try so very, very hard to show grace when other people make insensitive comments.  I try.  Most of the time, I am successful.  This week I was not.  Comments like, she will walk before you know it, and then you'll wish you hadn't been in such a hurry were pretty much unbearable.  I am sure that I will not wish that.  I am sure that she can get into whatever she wants, and I will not care.

Kelle Hampton is probably one of the most popular bloggers in the world of Down syndrome. Her blog was the first one I found when I googled Down syndrome and blog one night while Willow was in the NICU and I was pumping.  I am not a Kelle Hampton hater. She has her fair share out there, but I am not one of them.  I love to watch her daughter Nella grow through Kelle's photos and videos, and her story is one of the ones that inspired me to write my own.  Nella is so cute and Kelle's voice is one of optimism and hope.  I see the videos she posts of Nella dancing and twirling.  Most days, I find these adorable. This week I found them annoying. I found them a harsh, fluorescent spotlight on the fact that Willow is not only delayed compared to her typical peers but also compared to her peers with Down syndrome.  For Nella, Down syndrome seems just like a word on a paper.  Her delays have been slight, and she has had almost no medical problems.  For Willow, Down syndrome has been the thing that has affected pretty much every organ system in her body: eyes, ears, brain, heart, GI, and musculoskeletal.  It is the thing that has affected her development and made learning each and every thing an obstacle.  Every milestone is an obstacle that is overcome by therapy and our work and repetition. Nothing she has learned has been learned easily or without effort or intention.  We go to Down syndrome clinic and hear that her tone is low even for a kid with Down syndrome, and those words stick.  Her gross motor delays are severe, even for a kid with Down syndrome.  They predict she will walk around four years old, which is the the later range of what is considered normal. We smile and act like it doesn't matter, but sometimes I feels like it does.

 I have utilized social media much more since Willow was born as a way of connecting with other moms of children with special needs. It was really a lifeline in my first year and has been for many times since then.  It has helped at times when I cannot sleep because of the worry, and I send out a cry.  I get immediate responses back of I know how you feel and I feel that way too followed by advice on what to do.  I am able to share the guilt over feeling like I am not doing enough.   They understand the worries that come along with the stories about high functioning individuals with Down syndrome.  Because if there are high functioning individuals with Down syndrome, there also has to be low functioning.  I hate those terms.

I say all of that not so you would feel sorry for us or to whine and complain. Our lives are very full and a combination of beautiful and messy, effortless and hard, just like most people.  There are so many people out there dealing with harder things: death, cancer, mental illness.  So if I sound ungrateful for my life, forgive me.  I say these things in case someone out there feels these same things and thinks they are alone. You are not.  I also say them, because it helps me to speak my fears and worries out loud or write them down. They seem to have less power after that.  I also try to remember that I will not feel like this every day.  I speak it.  Sometimes cry about it or yell about it.  I tell a trusted friend.  I give myself a moment to feel it, whatever that fear or tough reality is.  But only for a moment.  Then pick myself up, brush it off, and throw it away.

This is what I am doing.  I have felt it.  I have told my trusted friends.  And now I am writing it down and moving on.  The best way to do that for me always will be to take a moment to remember everything I have to be thankful for.  So here goes:

This week I am thankful for the following:

1.) Willow is alive. This is one statement I should never grow tired of saying. I should never forget that this is a gift. She is a gift that could've so easily and so quickly been taken from us.  Thank you, God.

2.) Willow is happy. For all of the delays, the therapies, the doctors appointments, she is genuinely one of the happiest children I have ever met.  This happiness is what reminds me to chill out when I get all like, Am I doing enough? Why aren't you walking yet, dang it?  I am the one with the problem. She is content to learn and grow at her own pace.

3.) For every child who is mean to Willow, we know ten more that have shown us so much kindness.  Willow has three cousins who love her so much.  They try to cover for her if she is disobedient and give me the stink eye if I try to discipline her, even if it is for pulling their hair.  We have friends with children who do not seem to notice Down syndrome and who treat Willow with such gentleness.  We have parent friends who teach their children about acceptance and tolerance of others' difference.  These things do not go unnoticed.  We are thankful.

3.) I am married to a man made of more character than anyone I have ever known.  When I first met Josh, I, like many who meet him, underestimated him.  I knew he was good looking. I mean, that's a given, people. I knew he was an animal whisperer. (Remind me to tell you the story about the time he kissed a hummingbird at the zoo. True story.) And I knew he played the drums.  These things are all just at the surface.  I have since discovered a man capable of loving, serving, and leading our family so well. I could go on and on but was told early in my marriage not to brag about my husband too much or other women will hate me. So I will stop there.

4.) I am thankful for the incredible grace that I am given every day by my Savior who loves all people despite our doubts and flaws.

  

But he said to me, My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. - II Cor. 12:9