Language Learning and Special Needs…a conversation starter

RaisingTCKs for Mulitcultural Kid Blogs

My children are bilingual, including my daughter who has Cri-du-Chat Syndrome, a disability that affects her mentally and physically. She’s not the only bilingual person with special needs, though. In fact, I know a young adult with Down Syndrome who is trilingual. And I read about another boy with Autism Spectrum Disorder who speaks at least four languages. This goes against the belief of many educators and therapists that children with special needs should focus on one language only. Most of the research focuses on three specialty groups: Specific Language Impairment (SLI), Down Syndrome (DS), and Autism Spectrum Disorder (ASD), but the researcher still believes that other disabilities can learn a second language as well. This is great news for CCKs (Cross-Cultural Kids) and TCK s(Third-Culture Kids) who have special needs and their families who are raising them.

My daughter is fairly non-verbal, but she is able to communicate in both English and Chinese. She uses American Sign Language (ASL), speaks simple words in both languages, and sometimes uses communication boards. We speak mainly English at home and she goes to a Taiwanese special education school where they speak Chinese. Honestly, like most Third Culture Kids she is comfortable living in both worlds. It’s part of who she is.

But, what about just teaching a child with special needs a new language? Are there any benefits? Join the conversation over at Multicultural Kid Blogs where I share some benefits I’ve noticed.

Advertisements

Goodbyes and Skies – Signs of Letting Go

20180811_182558In books, movies, and even in TV shows the weather gives the audience a glimpse into the mood of the story. Other times it is the foreshadowing of something about to happen. Writers do that to captivate their readers. This past week, God used this same technique for me.

Last weekend we took our son to the dorm. The day before, we spent the afternoon at the beach. Heading into town we witnessed the sunset over the mountains. It was the perfect scene to a perfect day. I posted on my IG account, “Reminder of God’s continuing handiwork in creation, in me, in my family”. It brought me hope knowing that even though the next day would require me to “let go”, He would still be there working in my son, working in me.

The next day we drove up and over mountains to campus. We had decided to spend the night, which I believe helped me to truly be excited for him. I needed to be excited for him. It was exciting. He has a great place to live, a good roommate, wonderful dorm parents, and a great school to attend. What more could a parent ask for their child who will attend boarding school? It’s funny because I don’t remember the weather that day. It seems to be a blur.

But I remember what it was like the day we left…

Dark clouds loomed over us right before lunch. We said our goodbyes. He left us in the parking lot; walking back to the cafeteria with his backpack slung over his shoulder. We slumped down in the car and buckled up. As we pulled out, the first drops of rain began. I used my finger to wipe my damp cheek. The wipers swiped at the damp windows. As we merged onto the freeway, the heavens opened and the rain dumped its heavy load. We almost had to pull over. My heart felt the same crushing, drowning feeling. Goodbyes just stink, but I didn’t have time to sink to the abyss emotionally because I was co-pilot and had a job to do: keep the passengers quiet and help watch for traffic. It was seriously raining that hard.

Thirty minutes later the sky opened up like a dark blanket being lifted off our car. The mountains were once again in focus. The white clouds hung around the valleys and decorated the sky. It was gorgeous.

Hope returned.

20180813_170602

Isn’t that like life though, or shouldn’t it be? There are going to be days that are tough. Days we don’t want to go through. Days we don’t think we can get through.

We must get on the airplane and leave loved ones behind.

We can’t always take our pets with us when we move. Sometimes they die.

Our child breaks their foot two weeks before soccer season begins.

A typhoon (or insert tornado, fire, etc) destroys the scrapbooks, the photos. Memories lost.

Kids grow up and move on to university.

A diagnosis is learned.

But, we don’t have to stay in that dark and hopeless place. There is a path to where the sun shines down and the mountains can be seen from the valleys below.

Just as my husband kept moving forward in the torrential rain, we can keep moving forward. Sometimes it is a slow trudge, but it’s forward.

He kept his eyes on the road ahead of him. We keep our eyes on the path that is set before us (Heb 12:1).

We bring our focus on the One who put us on that path, who created the road, who created us. And we give thanks and praise to Him (Heb. 12:2, Phil. 4:4-7).

It is then, that the view becomes clearer and we are able to give more thanks. And as our hearts become grateful, the view only becomes more spectacular.

The road hasn’t changed.

No, he is there and I am here.

His first game was this weekend (though cancelled due to rain). There.

I am here. Still here.

The circumstance hasn’t changed. It won’t.

But, I get a phone call from the boy. He sounds happy. And I’m grateful.

Grateful for the age that I live in where he can pick up a phone and call.

Grateful that friends sneak photos of him on campus and message them to me within seconds after taking said photo.

Thankful that he gets to do something he loves to do.

Joy is found in the gratitude.

Your Turn: Have you ever noticed that the weather or the sky seems to reflect the mood or the circumstance that you are going through at the moment? Share your moment in the comments below.

The Countdown to Good-bye

 

20180720_213804If you followed the World Cup at all this year, you would recognize the mini posters hung on our wall. I just took this photo a few days ago. I haven’t taken those posters or flags down. Not even after Germany exited the tournament – enough said about that depressing night. 

Why are they still up?

I realized that this… THIS World Cup is the last one my son will be home for. The last one that we will be a family watching the games together. Okay, there is a chance we will all be together sometime in the future. It happened for my husband’s family in 2010 when all his siblings and kids were in Germany with us. But, that doesn’t happen often. I think I have kept them up because I know that when all the decorations comes down the countdown will begin. Usually this countdown starts their last year of high school, but for me it is starting the year before his last.

Why now?

He leaves in ten days for the dormitory. We will drive him the 6 hours it takes us to cross the island to settle him in his new room. This is not easy and something I thought I’d never need to do. I even prayed I wouldn’t have to, but here I am counting down the days.

And so is he.

One of us counts the days as if Christmas was just around the corner.

The other counts more like she’s watching dead leaves fall from a tree dreading the long, cold, bitter days of winter.

He’s growing up. He’s excited. He’s ready. I just don’t honestly know if I’m ready.

My hope is from those that have gone before me. Friends who have gone down this path putting their children into the dorm. Friends who have lived in the dorms as children. Dorm parents who have loved their “jobs” and share their lives with “their” kids.

And that right there, folks, is where my pain lies. I know his dorm parents are going to be great and I pray they speak volumes into his life. But, I feel I’m handing my extremely precious jewel, a key to my heart over to someone else to care for and love. He’s my kid and I honestly don’t want to share him with anyone else.

My biggest fear? That he’ll love them more than he loves me.

Crazy? Maybe, but that is where my raw emotions are.

This new chapter is scary and unknown.

I’ve been at the scary unknown place before. Different reason, but it feels the same. Fear and Anxiety try to take a couch seat in my heart squishing Peace and Trust right off onto the floor. If Fear and Anxiety had their way, they’d push Peace and Trust right on out the door of my heart.

I don’t want that. I’m sure you don’t either.

What to do?

  1. Name what you are fearful of.
  2. Acknowledge if it is a real threat or not.
  3. Walk in truth.

For me my fear was losing my son to someone else. As soon as I wrote it out, peace broke through like a river (that song has never made sense to me until just now). And now I need to remind myself that I’m not losing my son. He’s just growing up. I can grieve that – but I also need to rejoice in the fact that he is growing up and becoming his own man.

Your Turn: Are you at a place that is Scary and Unknown? Or do you have some tips on sending your child to the dorm. Share your story and where you are in the comments below.

 

My Mother’s Day Surprise

Celebrating holidays while living overseas and far from extended family is hard. I come from a large family who once a week regularly sits at my mother’s large table for the Sunday meal. Most holidays everyone is there – it is how I grew up. So, I love hosting get-togethers with other families, especially when they become like family. It makes me feel at home.

Mother’s Day was no exception. We had a potluck lunch after church. People ate between conversations and laughs. Kids splashed in the small pool. It was just a beautiful day.

After everyone left and I had a lovely nap, my husband asked if I’d like to try a new coffee shop nearby. “Bring your writing stuff,” he says.

I grabbed a notebook, my draft of my novel, and the book/handbook PLOT WHISPERER by Martha Alderson (if you are a writer, I highly recommend them). I glanced at my laptop, but decided time was too short for that. I noticed Uwe’s bag bulging, and figured he would work, too.

Oh, well, my Mother’s Day has ended.

I sat at a sidewalk table while he went inside to order. It wasn’t too hot with the shade of the umbrella. It almost seemed like we were in Europe, sort of. We talked about the day and the upcoming things that we were going to be involved in. I wondered when we were going to pull out “work”. Okay, honestly, I was thinking about when would I get to pull out my writing.

Uwe then looked at his watch and mentioned that we should probably go. I looked at my unopened bag and sighed.

“Wait, I think you should see the inside. You want to see this funny/cute French style hotel, don’t you?” he asks.

I followed him in. We checked out the restaurant.  We took the elevator, which has a ceiling to floor Eifle Tower painted in it. We got off on the 7th floor. While I looked at the view, he entered an empty room. I peered in nervously because he just entered without knocking as far as I could tell. I mean, who just wanders into hotel rooms without a key? 

I stood in the hall peering into the room. “What are you doing?” I yelled in as much as a whisper as I could without actually yelling. My mind told me this was all wrong, but my feet seemed to have a mind of their own and pulled me in.

It isn’t your typical hotel room with one bed, desk, TV, and carpeted floor. This room has wooden walls and flooring. All the furniture had a dark wood, including the tiny wardrobe. It had two beds facing each other, not side-by-side. And to top it off the two windows, one long and narrow and the other short and set low to the ground, had wooden shutters! It was mesmerizing in a cheesy cute sort of way.

Uwe rested his bag on the bed and began empty out the contents.  I watched as my toothbrush, toothpaste and brush bounced on the bed. He continued with my clothes and a few other books.

“Did you get us a room?”

“No, I got you a room. You have your writing books. I brought your Bible and journal. One night for you,” he said as he handed me the keys (which had an Eifle tower key chain).

“What?!? Excuse me? Uhh, What? Man, you are good. I had NO idea.”

With a kiss on the cheek he vanished out the door. I’m sat on the bed and stared out the window. I love my family and I love spending time with them – but sometimes as a person, a writer, I need to break away with no distractions. No guilt. Freedom to be creative. My husband knew this – he knew I needed a surprise.

So, that is just what I did. I began deepening my characters and hashing out scenes – all are steps to finishing this novel I started a few years ago.

And that was my Mother’s Day surprise.

Have you ever been surprised by someone? Share your story in the comments below.

20180513_164231

20180514_090819

20180513_173620

20180513_173356

20180513_173756

20180513_191958

20180513_18480420180514_074007

 

 

 

 

 

 

 

A Mother’s Day Letter to My Younger Self


20180512_214142

It is the night before Mother’s Day. For some reason my mind traveled to a time period fourteen years ago. I was a young mom about to hear my daughter’s diagnosis. With time wisdom grows. It’s through this wisdom that I wish I could have shared these few thoughts with that mom I was back then.

Dear Younger Self-

I know you forgot what today is, but let me gently remind you. It’s Mother’s Day. Don’t put your head down in shame. I know you’ve lived with your mother for the past several weeks. I know you forgot to buy even a simple card to thank her for her selflessness. For all the drives to the city, waits in the hospital, and the endless cooking she has done for you. I know you wish your husband and almost two-year old son were with you instead of back in China. The hospital visits and tests have taken a toll on your mind and body. It’s a scary place to be. You’ve talked with doctors, and even specialists. You’ve held your baby while nurses have poked her with needles. Yet, still no results. No diagnosis.

Emotions will visit you, strong emotions that will come when you least expect it.

Fear…

Don’t play the “What if” game. It will open wide the door to Fear. But, I know you will. The questions will come at you like quick shooting arrows. “What if she never walks?” “What if she dies?” “What if we have to leave China?” Don’t worry; he gets the best of me still today with his quiet whispers of doubt. Fear wants to consume you, but he won’t. Your daughter will get the diagnosis you don’t want to hear – Cri-du-Chat Syndrome. Your mother will be next to you in that small room in shock. Maybe it is a mother’s instinct, or maybe not – but you won’t be shocked because deep down you already know. Your world will be shaken though. Your baby will need a feeding tube. You will feel like all the air was taken from your lungs. Sit tight – the God who created that bundle of joy topped with red curls already knew. He’s not surprised. So, just breathe – in and out, in and out. You will feel like waves are pummeling you to the bottom of the sea, but dive deep into those waves. It is there where you will find peace. Dive deep into the peace that passes all understanding, the peace that comes from our Lord Jesus Christ. Just breathe.

Grief…

Grief will come, in fact, she already has. This Mother’s Day you will grieve for that child you thought you knew. You will cry hot tears that seem to never run dry. They are tears of healing. Release them. Let them wash over your face while they wash over your heart. I wish I could tell you that Grief eventually exits your life, but I can’t. She will come back when you least expect it. Fourteen years later, she still visits me. When I see other kids in middle school laughing with their friends at the local 7-11 or tying up their shoes about to play in a soccer tournament, she comes back. My throat tightens and my eyes begin to drip tears. And there she is. Grief dressed in black. I’m learning that Joy can accompany Grief. It is those times I offer gratitude and praise that Joy is also there. I give thanks for what Matthea can do and I praise God for his many blessings in our life. So, as you grieve this Mother’s Day know that “joy will come in the morning.”

Loneliness…

This Mother’s Day you will feel lonely. Uwe and Marcus are miles away. You feel like you are the only one going through this, yet you know that is not true each time you enter the hospital. But, Loneliness comes and tries to squeeze out those in your life who love you. Don’t let her. Remind yourself that you are not alone. God is there with you. Your family is there. And remember your friends just drove a few hours to spend time with you. They are praying for you. Don’t let Loneliness crowd out the others.

Guilt…

Yes, you will feel guilt. Guilt will overshadow Grief. Guilt will remind you of friends who have lost children. Guilt will point a finger and say, “You’re child is living. Why are you grieving?” You won’t really know what to do with Guilt. You will try to hide Grief, but it will still be there. I want to give you permission to block Guilt out of your life. You have permission to grieve. This diagnosis is hard. There are a lot of unknowns. It is scary. So, don’t believe Guilt. Pray for those friends and be sensitive when you talk with them, but don’t bow down to Guilt.

Hope…

You may not feel like there is any hope right now, but she is there. Hope will come pouring in when you find out that you can go back to China. Hope will come when you gain confidence in using the feeding tube. And even this day, Hope will come in a form of a Mother’s Day gift from your sister. A small cut rock that says, “A Mother’s Love begins long before we can remember…And brings us Warmth and Happiness We Never Forget.”

Give yourself some grace today. Your love for your children comes through. I can’t tell you that everything is perfect and life is like a rose garden. Life isn’t easy. I mean whose life really is easy, huh? But, life is good and full. I can’t tell you all the great things because you need to experience some surprises in life.

I wish that the decade older version of me would send me a letter like this. I sure would like to know how these teenage years turn out.

Your loving “more mature” self,

MaDonna

The Art of Letting Go – “Letting Go”

bikes-2619653_1920

Today’s guest post is from a new friend, Jodie Pine, that I’ve “met” online through Velvet Ashes, but then realized that we have MANY common friends on Facebook. Jodie has offered to re-post this article from 2013 from her blog Jodie’s Journal

Yesterday I watched my boys run off into the rain. One of them caught sight of a bus ahead and said, “That’s us. Do you want to run for it?” The other one immediately responded, “Let’s go!” And the next thing I knew they weren’t beside me anymore. As the distance between us grew, one of them turned around to yell, “Bye, Mom!” over his shoulder, while the other was so focused on the bus he never looked back. One of them was balancing an umbrella as they jumped and splashed their way through the puddles in hopes of reaching the bus in time. The other one didn’t want to bother with a silly umbrella. Because it’s manly to get wet.

My boys. The bookends of my life. Strong and sturdy. One on each side. So very different from each other. But so close. They’ve always been together, and they just seem to belong together. But one turned 18 yesterday. Soon he will go off to college in America and life is going to change. And as I watched the two of them, stride for stride, turning the corner together my heart ached. For them and for me. It’s hard. This leaving behind business. Because it involves letting go. And sometimes I just want to hold on. But time passes through my fingers like water. And I can’t stop it.

When I reached the end of the street and turned the corner, I smiled to see them huddled with the crowd at the bus stop. They told me, “It wasn’t the right bus.” And I thought about waiting with them until the right  bus came, just to get a few more minutes together. But I decided instead to encourage them to have a good time and to continue on in my wet walk (even with an umbrella) to the shopping area of our old neighborhood to get some things they needed for camp. And this time I was the one leaving them. But it was ok. Because I knew they would get on the right bus that would take them where they wanted to go. They would have a good time with their friends. And I would see them after dinner.

But this morning the boys left on a 40 hour train trip with three of their best friends to a TCK camp in southern China and it didn’t feel ok to me then. Because it wasn’t just this goodbye. It was the projected big goodbye and the reality that they will be gone for two weeks. After they get back to Lanzhou, our family will have less than two weeks together before CJ leaves for a month wilderness program in the US. And then we’ll have just about a week together in mid-August when we take him to freshman orientation at Notre Dame.

This morning, it seemed to me that during our past two weeks in Tianjin, I have been like a trapeze artist. Able to catch the outstretched arms of whoever is out there in a choreographed kind of rhythm. What activity is next. Who needs to be where. Graduations. Meetings. Medical appointments. MUN. Times with people. Kids’ sleepovers. Parties. What can we fit in. What needs to wait. How to coordinate. But this morning I couldn’t catch the hands out there anymore. My emotions hit rock bottom.  God, this is hard. I don’t want to do this. If I can’t go back in time and can’t stop time, could I push the fast forward button to get past this pain of letting go?

As I’ve been battling both migraine pain and emotional pain today, I’ve felt like my physical body and my heart have been like a wet towel in someone’s hands, who is twisting the ends in an attempt to squeeze all the water out. And all my energy and capacity have been drained.

Jordan decided to have a final sleepover with  her friends tonight before she leaves for the same TCK  in southern China tomorrow night (she’s flying instead of training) and I will be on my own here for another week of various activities, as Charly is already back in Lanzhou.

My rock bottom emotions today have brought me to a place of deep sadness. But even as I am typing this, I have a sense of renewed hope because I know that God will meet me right where I am, in this painful ache of my heart. He already has. It is comforting to know that I have heart friends close by who are praying for me, and that I can easily arrange to spend time with someone if I need to. But I really want to turn to God and hear from Him in this time of being alone right now.

I asked Jodie how things were now after four years. Here is what she wrote:

Four years after I struggled with CJ leaving for college on the other side of the ocean from us, we attended his graduation at Notre Dame (amazed that he had the honor of giving the valedictory address). Our family of 5 had grown to 7, through God’s fulfillment of our 6 year long adoption journey by bringing our Chinese sons David and Daniel to us just after CJ left for college. We then moved from Lanzhou, China to the US two years ago and launched Joshua into college (he chose Notre Dame as well). One year later I helped Jordan move into her dorm room at Calvin College. Through all these major changes for our family these past four years, God has remained faithful. CJ shared in his graduation speech that the song “Your Love Never Fails” really helped him through the transition across borders. “Your love never fails, it never gives up, it never runs out on me.” God has continued to hold my hand through the ups and downs and it’s been a blessing to see each of my kids, both at home and on their own, develop their own personal faith in the God who never changes.

Thanks Jodie for permission to repost!

If you have a story about “Letting Go” you’d like to share, please email me at mdmaurer135(at)gmail(dot)com.

The Art of Letting Go

 

child-1837263_640

Mothering a TCK has it’s up and downs. At times it is not for the faint at heart. The older my children get, the more I respect my mother-in-law. She raised three TCKs from birth in a country not her own, but also in a school system very different than the one she grew up studying under in Germany. Then as they graduated, she watched them board airplanes to travel around the world to begin their own life. Now her grandchildren are spread between three continents.

My kids have not started university, yet. My oldest has three more years, but it won’t be long until I say my “good-byes”. But, then again, I did just say good-bye to him a few weeks ago. He is not going to a dorm, but he does have the opportunity to play soccer with one of the international schools on the island. Unfortunately, it is too far to commute to from our home, so he is living with some friends for the next few months. As I write this post, I know he is in the middle of a game and it is killing me (and my husband, too). We wonder if he’s made a save (he’s the keeper), or if the wet ball has tricked him to dive in the wrong direction (it’s been raining the last few days). We both try to focus on other things, but then my phone lets out a BING. A friend sends me a video clip – the ball slipped between his hands. On my phone we watch the mini version of our son draw his hands up behind his head then smack his legs, a sign of frustration. This isn’t the first clip we’ve been sent. During previous games other friends have slipped us glimpses of him making some pretty good saves. This clip, though, is hard to watch – he can’t hear us cheering in our heads, “It’s okay. You’ll get the next one” and “You’ve got this, Bud.” And my heart is screaming…

This is so hard.

This isn’t what I signed up for (I don’t care if Dave Pollock told me 20 years ago that one day this would happen if I had children while living overseas).

Why isn’t teleporting invented yet?

As I lament, I’m reminded that I’m not the only one who can’t watch their son play a high school sport or long to have him sit at the supper table. I have friends who dropped their children off at boarding school. Some won’t see their children until Christmas. Others left their child, now an adult, at the university dorm room. They are not the first to do this. My mother-in-law was not the first. Parents of TCKs for over a century have had to learn the art of letting go, or maybe it’s thrust upon them.

I feel I’m just at the beginning. I know that there may be other sport seasons he will want to tryout for. He may even have the desire and opportunity to board someday. But, I do know that one day he will leave. He should leave. He must leave. He will become an adult. And though I know this in my head…

I miss him.

As moms we begin this letting go when our children take their first independent steps. They teeter, they wobble and most likely they fall, but eventually they get up and begin walking or possibly with some running. Or maybe it was when you dropped your child off for the first time at school. Walking away as you entrusted your child to another adult, possibly a stranger that spoke a language you barely understood. Those are the first phases of this process. So, whether you are at the beginning stage or getting closer to what seems like the final stage, I believe we could learn a few things from those who have gone before us.

I’d like to start a guest series called “The Art of Letting Go”. I know many of you have stories or tips that helped you. Letting go to allow your child to grow is an art – it is terribly painful, and even scary, but the artwork can be beautiful. So, if you have a story you’d like to share, a humble fail that you learned from, or even some tips to help those of us just starting on this journey please send a post. This can be as broad as a child going to university, into a dorm, or first time attending kindergarten.

You can email me in a Word doc. Each post should be around 500-800 words. If you feel you have something to share, but you are uncomfortable with writing, we could even set up an interview type post as well. I’m flexible. Please include a bio with any social media that you’d like people to follow. You can email me at mdmaurer135(at)gmail(dot)com.

*Photo from Creative Commons by Pexels

Raising Children with Special Needs When You Live Overseas

 

Forest, Hope, Radiant, Zen, Sunflare

“Your daughter has a rare genetic syndrome called Cri-du-Chat Syndrome, and she needs a feeding tube.”

My dreams, my desires to live overseas, seemed to shatter with that diagnosis. The past 10 months all made sense. This was the reason she was hospitalized in Beijing for bronchitis at 3 months old. This was the reason for choking almost every time she nursed. And this explained why, just a few months before, she lay limp with pneumonia on a large hospital bed in the middle of China next to six other children with some sort of lung infection. All of this led to me flying alone with her to the U.S. for medical tests. This was the reason I sat in that small clean consultation room with a doctor I barely knew.

Was this going to be the reason God would end our time overseas?

And then the haunting question, How am I going to tell my husband Uwe half way around the world on the phone?

To date, that was the hardest phone call I have ever had to make.

When Uwe and our oldest son (20 months) arrived in the U.S., we believed our time overseas was over. At that time we only knew of one other family living overseas with a child with special needs, but our daughter seemed to have more medical issues. As we consulted with surgeons, therapists, and doctors, not a single one hesitated to tell us to go back. This was incredible to us because we, like so many others, didn’t think it possible that families affected by disabilities could live and work overseas. So with a list of diagrammed exercises, extra feeding buttons and bags, and a feeding machine, we returned to China. Uwe went back to work as principal at the international school, and I began therapy with Matthea. Life changed, but God had not. He was still good. He was still providing.

Our story isn’t unique. There are others like us. Last week I was able to interview eight families ministering overseas who also have children with special needs. All of our stories seemed to share the following three themes.

You can finish reading over at A Life Overseas

Marathon Parenting

Two months ago I finished my first ever half marathon. That would be 21km of feet hitting 20170316_155509the pavement at a slow jog. Though my times were nothing to brag about, I finished and I have a medal to prove it. The medal is hung from a wide silk ribbon and it is in the shape of a hot air balloon. It is pretty, but let me tell you the race was anything but pretty.

Okay, parts were pretty. The location was in Taitung, Taiwan. Known for beautiful mountains and blue/green ocean. We started out in Forest Park, which is just that a park forested by trees. We ran towards the mountains. That means that I ran uphill for at least 3km of the race (I calculated), but it also means that I ran downhill 3km. The rest of the layout was flat along the river basin with the view of the mountains the first half. The last half I noticed rice fields flooded, rows of green tomatoes hanging from their tepee-like frames all while dreaming of the finish line and a cold green tea.

Because…

It was HARD! I mean I had trained for this day. It wasn’t like I just showed up and put on a number hoping that I’d finish. No, I’d spent the last six months building up my stamina for this day – and it was still hard.

It’s funny how your mind sees things differently when your body is in pain. Like those slight inclines turned into steep cliffs and the curves in the road became tormenting hairpin turns hiding the turnaround. Then the last 3km of the race perseverance was a must. No joke. I was back in the park when I saw the 3km marker. Seriously? I still have three more to go? But I’m in the park! My legs were feeling the burn, I had slight abdominal pain, and the sun choose to come out and shoot rays of hot fire at me. I got to the 500m marker and rounded the turn with a sharp inhale. Where is the balloon filled archway announcing the end?!?! I wanted to lay down right there. Another “more mature” runner was in front of me. He and I had been encouraging each other with the Mandarin phrase “Jia you”. With his encouragement we finished together.

It was during the last stretch that I remembered I had written an article comparing  parenting a child with special needs to a marathon with hurdles placed throughout the race. At the time of writing that piece, I had only run a 10k. I used testimonies of other long distant runners to write that piece, but I can now testify that I was pretty accurate.

A few weeks ago a friend reposted a quote on Facebook. She, too, is parenting a child with special needs. It said..

“Every parent plans to raise their child for about 18 years, set them free for 30 years and then hope they come back to help them face the final years of their own life. A SPECIAL NEEDS parent plans to raise their child for 65 years and while doing so also has to prepare for the other 20 or so after they themselves are long gone…. Let that sink in for just a moment and you will begin to understand the drive and determination that many of us have while we are here on earth.”

I don’t know who wrote that. It wasn’t me, but it was definitely the feelings I was having during that hot Sunday morning. Let me explain.

I sometimes feel I’m running uphill. Life is hard and sometimes a struggle. Let me give you a glimpse from our meal times: Jie Jie, who is now 13, but mentally about 4, has to have her food cut up into tiny bites so she doesn’t choke. We have to watch her closely when she feeds herself as she tends to take 3-4 huge bites at a time and proceeds to choke anyway. Then she gets upset with our oldest because he has his elbows on the table, and then she thinks her chair needs a cushion (although before the meal she said she didn’t) or we need a completely different chair altogether. By the time she finishes her meal, everyone else is done and the table is cleared.

I feel my body giving out. It has been reported in health studies that parents of children with special needs age quicker. This is due to the stress. Stress of child choking to death. Stress of child getting hit by a car. Stress of trying to plan for the future. Stress from the IEP meeting or trying to figure out how best to homeschool your child. These are just a few that I know parents deal with on a regular basis. For me my body gave out in the form of a sprained shoulder. I was in physical therapy for about three months repairing the damage, which we believe may have been caused from years of me daily tightening my neck muscles every time Jie Jie would grab me in a super bear hug squeeze. Some days this happens 10-20 times. I have a very tight neck.

I am tired and weary at times.  Many kids with special needs may not sleep all night long. Many parents go about their day on about 3-4 hours of sleep. Plus all the trips to the hospital for therapy, check-ups, and surgeries. Fixing supper? Laundry? Who has the energy?

I can’t see the finish line and afraid I never will. Just like those deceiving turns from the half marathon that blocked the finish line, I can’t see the finish line of parenting. And this is where that quote hit home for me – it can be overwhelming. This is when perseverance has to kick in. There are days I want to give up, but I can’t. I want to finish this life well.

But…(here’s the encouraging part)

We don’t run alone. Just like the other runners in my half, there are other parents who are running this race with me. They may not live in the same town, and maybe not even the same country, but, they are on social media. We are there to support and encourage each other in our knowledge, our joys, and even in our frustrations. We understand the pain and the fear. I am part of a Facebook private group for those dealing with the same syndrome that Jie Jie has. If you are not part of a group, I highly suggest either searching on Facebook or on a search engine.

Spectators.  Running through a small village near the mountain’s edge a few elderly people sat in white plastic chairs cheering us on. In life, I have people who come alongside me and help me. That morning of the race, a dear friend came to our home at 5:50am to be there when Jie Jie woke up so the rest of the family could complete their own race (yep, I signed everyone else up for the 10/5km).

Qualified Help. During the run qualified EMTs on scooters rode up and down the road ready to attend to those in physical need. As a parent of special needs, there may come a time when qualified help such a therapist, counselor, or psychologist is needed. Don’t shy away from mental health help. I just read in a local English newspaper here of a elderly Taiwanese man killing his sister who had special needs because of the stress from the past 30 years of taking care of her. None of us want that. We need to take action before it gets bad.

So, who are you?

  1. A runner? Parenting a child with special needs?
  2. Active spectator? Maybe you’re the spouse, the grandparent, the aunt/uncles, or maybe a friend who helps out. Thank you. Thank you for your help, your encouragement, your presence in our life.
  3. Sideline spectator? You see families, but not sure how to help. You may not even know anybody with a special needs – they are not in your line of vision. I have a challenge for you: First, look – you always see what you are looking for. Second, just smile and say “Hi”. Seriously, just that small act of kindness speaks volumes to us. It’s a reminder that we are human and that you acknowledge that we and our children are humans

Just as the scenery during my half marathon was beautiful, a small act of kindness brings beauty to a harsh world – no matter if that person has special needs or not. I challenge you to do one small act of kindness this week to anyone, but you’ll get extra points and a virtual medal if you do it for a family touched by disability.

The Leaving Series Part 5: Leaving in a Hurry Doesn’t Mean Grieving in a Hurry

Today’s guest writer comes all the way from DjiboutiMany of you, I’m sure, are familiar with her writing. You may even be familiar with her story, but today she has so graciously opened up and shared even more of that evacuation from Somaliland and what she learned from that traumatic experience. Please welcome, Rachel Pieh Jones.

leaving in a hurry1

In 2003 my family evacuated from Somaliland. I have written about it here (The Big Round Table) and here (Brain Child) but the short story is that we had thirty minutes to pack a small bag and leave and I didn’t go back for over ten years.

We first flew to Ethiopia, where we stayed for three days. Then we flew to Kenya where we stayed for three months. Then we resettled in Djibouti and have now stayed here for eleven years.

In the flurry between that final phone call and when we started the drive to the airport, my husband and I had to close down our house, remember to grab the essentials, keep our toddler twins from becoming frightened, and hold our own broiling emotions and thoughts in check.

There were a few flashes of fear, a few brief tears, even some laughter as I helped the kids wave goodbye to friends they couldn’t see and toys they had left behind. But there was no time to fully feel the impact of what was happening. We had to function, keep moving, don’t think, don’t feel. Just get out.

The emotions struck like an earthquake two days later.

I had to walk away from our family meal at a cafeteria. I climbed rickety stairs in the hotel in Ethiopia, up to our tiny room. I lay down on the bed and cried.

Once the ‘just get out’ had been accomplished and everyone was safe, once we had informed our families and read some newspaper headlines, once we had time to sit down and breathe and no work to rush off to since we were in limbo-land, I started to see flashes of the faces of the people we had left. I started to think about what had happened to cause our flight, the gunshots and dead bodies. The what-ifs.

I kept crying off and on for a few days. When the kids asked about whether or not they would see their friends again, when the kids asked after a book we hadn’t brought along, when my husband asked where we should go and we tried to talk about work prospects.

We flew to Kenya where we received some post-trauma counseling. We made plans to move to Djibouti, on the invitation of a Somali friend who wanted my husband to work with him, teaching. We moved on.

But the aftershocks of grief followed us and occasionally shook the ground, unexpected. I was surprised by this. We hadn’t lived there long, no one I loved had been killed. Just a home, possessions, work, and an idea of what the future would look like. But it was still loss and so I learned to let myself feel it. I was also surprised by the resurgence of it now and again into the following months.

I still thought about people, still wondered what had happened after we left. Who was now taking care of the chickens in our yard? Who would keep the dirt watered so the neighbor’s goats could come and munch weeds? Who would hire our guard so he could continue to provide for his family? And I thought about all that we hadn’t finished – my husband hadn’t finished the semester at the University. What about his students?

Eventually the sadness faded, as we stepped into the new place and new life, and after a long time, as I began to feel at home in Djibouti, I came to think of our village in Somaliland with nostalgia. Sadness had somehow transformed into a tender affection. Gratitude even, for the privilege we had been given of a few short months living there. I don’t think that is what happens with all forms of grief, not even close. This is one of the biggest things I have learned about loss. It comes in all shapes, sizes, and time frames and so does the grief that follows. Leaving in a hurry doesn’t mean grieving in a hurry. And so enters grace. Grace on ourselves and on others to allow each other to uniquely grieve.

Thanks Rachel for sharing with us today. I really appreciate your willingness to share your grief with us. I love your last few sentences, which is why I bolded them. Such wisdom.

If you still would like to share your leaving story with us, you can contact me at mdmaurer135{at}gmail{dot}com. I will be closing the series in a few weeks unless I hear from more writers. I’ve truly enjoyed reading and gleaning insights from you all.

Here are links to the other stories if you didn’t get a chance to read them: Part 1, Part 2, Part 3, and Part 4

djiboutijonesRachel Pieh Jones lives in Djibouti with her husband and three children. She has written for the New York Times, the Christian Science Monitor, FamilyFun, Babble, the Big Roundtable, and Running Times. Visit her at: Djibouti Jones, her Facebook page or on Twitter @rachelpiehjones