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.

Beach Therapy…for my daughter with special needs

20151003_162231For the past nine years we’ve found ourselves living as educators/cross-cultural workers/Christian workers (we’re still figuring out what to call ourselves) on an island that sits on the brink of the Pacific Coast. I have come to realize that being on the beach with a good book and drink is therapeutic to the mind, body, and soul. There is just something about the whooshing sound of the waves, the warm sun and sight of green mountains, blue sky, and blue/turquoise water that just makes me exhale deeply. Seriously, just writing about it I exhaled…

While I quickly discovered this amazing way to relax – remember I grew up in Midwest, USA – I had NO idea how taking my daughter with special needs would be beneficial to her as well. And to be honest, living overseas makes it difficult sometimes to find therapies for our TCKs with special needs. So, I love it when I can do things that I know are beneficial and inexpensive.

1. Digging in the sand – She uses both fine and gross motor skills as she digs holes and her sandpit is HUGE.
2. Filling buckets – with the sand that she just got from digging holes and also the countless trips back and forth to fill up the buckets with water to pour into the holes.20151003_160440

3. Sand – Just the texture of the sand itself is therapeutic. Many kids don’t like it, so they have to be introduced to it over and over – but others, like my daughter, LOVE it. For us, we had to teach her that it was not okay to put it in her mouth.

4. Running/walking in the sand – If you’ve ever tried running on the beach yourself, you know the workout you can get from it. Enough said.

5. Standing in the waves – This really depends on how strong the waves are. Of course, if they are pretty strong – then do not put your child in the water. But if the waves are mild, then the constant motion is great for balancing. *

6. Jumping the waves – I know our PT has worked with us on getting Jie Jie to jump and this is a fun way to jump over something.

7. Collecting shells – We can work on balance as she 20150919_160228bends over to pick up the shells and walking without dropping the shells out of the bucket.

8. Playing with the hermit crabs -Jie JIe is an animal lover, and last month her younger sister introduced her to hermit crabs. She loves picking them up and letting them scurry across her hand or trying to scare me with them.

9. Boogie boarding – My daughter is not able to do this completely on her own, but she loves to lay on the board and let the waves take her in and out. We also go out with her sometimes and help her catch a wave that is a bit farther out.

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10. Surfing – I’ve not had the opportunity to do this, but from reading about Surfer’s Healing, it is something I’d love for her to experience. Below is a picture of her out in the kayak with her dad – this girl loves the beach.20151003_151111

We’ve just moved to a new city, finally – but transition is rough. I think tomorrow we are in need of some therapy….beach therapy.

* Always be extra careful when taking your child with special needs out into the ocean. We always have Jie Jie wear a life-vest even when the water seems calm.

Your Turn: What are some activities that you have found therapeutic to you and has been good for your children as well? Please share below.

 

Hiking….with kids

Hiking with kids requires a different set of goals and guidelines. I recently took the girls out by myself. We were out to conquer the little mountain that overlooks our apartment building. Please note that hiking here is steps, lots of steps.

Jie Jie has almost mastered the stairwell using one hand on the railing. This mountain is just steps leading and winding up the side of the cliff with no railing. Let’s just say, we all got a workout and I learned a few things along the way.

If you want to read more about what I learned and how you can plan a nice hike with your children read the article I wrote for Multicultural Kids Blog here.

Expectation

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It’s the season of Advent, a time of expectation, a time of hope, a time to put up decorations, make cookies, and this year it is a time to pack and get ready to board a plane to Germany to visit family. So much excitement and expectations going around in our little apartment.

The biggest expectation comes from my daughter with special needs, little Jie Jie. She wants snow. It doesn’t snow in Taipei. She hasn’t seen snow in about five years, I think, but wants it so badly. Everyday she either prays or asks us to pray for snow at Oma and Opa’s. Her expectation has really gotten me thinking on a deeper level.

1. She prays consistently. She has been praying everyday – sometimes more than once a day – for the past week that there would be snow. This is a long time for her…She understands that God is who she should ask for things that are dear to her heart.

2. She believes. Sometimes after her prayers she will go to a window and look out at the city below. Then with a bewildered look she turns and silently asks “Why?” Other times, she gets excited and pretends to throw snowballs. She knows that God is going to answer her prayers…we’ll have to wait and see how. It could be a “No” – and we’ll have to deal with that if that time comes. But for now, I am enjoying it. I love the excitement she draws out of her siblings as they begin to think about the possibility of building a snowman or getting to maybe try cross-country skiing for the first time.

I’m challenged by her, though. I mean, here is this nonverbal child for the most part who is intellectually disabled praying consistently in belief that God can do this. Do I consistently pray for people or situations? And if I do, am I praying in belief that God can change a heart towards him or turn a hard situation into something beautiful? Or do I get sidetracked by all the “To Do” lists I’ve created, the prepping for this trip, or the many worries and doubts that tend to fog my mind. Or has that expectancy I once had  waned-out due to lack of persistance or dare I say, belief?

Well, those are my thoughts this evening as I sit quietly alone staring out over my screen at the just decorated Christmas tree.

I’m linking up with Velvet Ashes this week at The Grove. This week’s theme was “Expecting.”

Learning Simplicity

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Birthdays. That word seems to have lots of emotion attached to it, doesn’t it? Think for a minute. A child begins counting down the days until the BIG day comes immediately the day after their birthday – unless you celebrate Christmas and then there is a mini-break. They are excited for the presents, the cake, the anticipation of it all. As we get older, many of us (not all) dread watching the number of candles added to the cake until it looks like one big fireball about to explode. Parents of the birthday child…well, planning out a party can be stressful, especially if you live overseas you have this idea of making the party a top-notched one right off a Pintrest page.

I admit, I have tried to be one of those moms. I have lugged party hats, plates, cups, napkins, banners, etc for all three kids half way around the world. I have a patient husband. I loved making the cakes, decorating, and planning the games to all go around the theme. Then the day of the party would come, and I’d be nervous – I’d be smiling and laughing, but deep inside I just wanted it to end. I was afraid it would flop. I know silly me, it isn’t about the party, but about the child… A few years ago, I caught on…sort of. My son got older and didn’t want the theme. He just wanted his friends, cake, and playing at the park. It was one of the best parties for me. It was easy and the kids still had a blast. Same for Mei Mei, simple with friends equaled fun.

But, what do you do for a child who has no friends?

Jie Jie has no friends. Really. She has tons of people who love her and who she loves dearly. These people range from adults, kids in her school, to people at church, but she doesn’t have friends. This isn’t a huge issue until her birthday comes around and I try to plan a party. I think her last party was when she was in Kindergarten and we invited her class – the special ed class in the local school. Of course, it was themed – Penguins!

Then we started homeschooling, and I’ll be honest every year I dreaded her birthday. Each one reminded me what she lacked – and it wasn’t just friends. I’d be reminded that she was one year older and farther away from the learning curve of other kids her age. Both facts punched the gut and I couldn’t plan anything. So, the past few years we’ve just gone out for supper and had some cake with a few presents. Then guilt would pour over me for not planning a nicer party for her. Nasty cycle.

We just celebrated her 11th birthday last week. A week before her birthday, I felt the pressure, the dread. My husband informed me that we were having a party this year. I asked, “Who are we going to invite?” He told me, “No one, we are going to have a family party.” I’ll admit, I dragged my feet and didn’t think it was going to be much fun – but then he made me go out with him to buy presents. We bought her a calculator, a flashlight, amongst some other things. We talked about what we could do – like games to play, simple decorations, and planned a trip to the zoo for that weekend. Amazing how attitudes can change once the focus shifts to more positive thoughts. My husband is such a great and wise man.

The day of her birthday, I brought her and the kids home early. We frosted the cake and set up the game, “Pin the Tail on Bullseye” that my sister had sent to use for her birthday last year. Ge Ge blew up the “Toy Story” balloons, also from last year’s package that we hadn’t used. When my husband got home, the party began. We all played the game, ate cake, and watched her open presents. We took her out to eat for supper and the restaurant sang to her and gave her a birthday balloon. This past weekend the five of us went to the zoo because that is what she wanted to do. She wanted to see the giraffes.

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It was the best birthday party we’ve had in years for her. You know those moments you sit back and watch the world around you – in amazement of your family and how grateful you are for each one? That was sentimental me this past week. I know that she would have had a blast with just cake and presents, but playing the game and laughing together was what I needed. A reminder that simple pleasures like a party is good for the soul.

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So, how do you do birthdays? Do you go all out (don’t worry, I won’t judge you…in fact, I applaud you!) Or do you do simple family birthdays? Do you have a child with special needs? What do you do? Please share your stories and thoughts in the comments below.

The Transition for the Child with Special Needs

I just wrote about helping your children transition from the summer holidays to going back to school. You can read that by clicking on “The Transition“.

How about kids with special needs? They may need a little more time and creative ways to help them with this transition. Below are just some additional ideas to help them adjust to the transition.

  • Talk about it. Talk about what school looks like. Talk about their friends and what they will do while they are there. Even doing some role-play activities to help them get into the mindset will help.
  • Count down – Make a simple chart with the number of days left until school starts up. Let your child mark off each day. HINT: Don’t start too far away from the first day as it might be too overwhelming. You know your child, so adjust accordingly.
  • Visit the school: If the school allows it, make a trip to the school to go and see the classroom, to reconnect BRIEFLY with the teacher. (Hint: Don’t stay more than 5-10 minutes. Teachers love to see you, but they do need to get their work done.)
  • GRACE: Give your child grace and give yourself grace those first few weeks that school starts back up. Remember that sometimes change and transitions are not always what we hope or dream they will be – but they eventually do adjust.

I know I need to get started with this transition with Jie Jie. Otherwise she just may think that I threw her into the Arctic Plunge Swim.

If you have a child with special needs, how do you help them get ready for going back to school? Please share in the comments below.

Coming out of Grief

I’m joining in today with Velvet Ashes in their Friday “The Grove” linkup. This week the topic is on what every expat knows well – GRIEF.

Grief comes in various forms for the expat.

  • Every spring we say good-bye – either we are moving or someone we know and have grown to love is moving.
  • We say good-bye after every “home” visit – each getting a little harder as we see our grandparents, parents aging.
  • We miss family gatherings for birthdays, Christmas, Thanksgiving, World Cup parties, or whatever…fill in the blank.
  • Death of dearly loved ones – either family or tragic accidents

For me, those have been true – but as a parent to a child with special needs I seem to grieve regularly. I don’t mean it is there every single day all the time. No, my grief hits me when I least expect it. It sometimes hits hard like a punch in the gut. It is strong enough to bring instant tears – but not strong enough to leave me in a pit of despair. I wrote a story for the anthology MONDAY COFFEE & OTHER STORIES OF MOTHERING CHILDREN WITH SPECIAL NEEDS. The section below, I feel, illustrates how grief tries to pull me down.

 I’m told that parenting a child with special needs stays difficult. It doesn’t just “go away.” I have found that to be true. Grief finds me at odd places. It finds me at the park where I see girls playing and laughing together while my daughter stumbles up the stairs to go down the slide. Grief finds me in the hospital holding the results from yet another developmental testing and I see she isn’t mentally where I thought she was. And Grief brings tears to my eyes when party invitations are passed out and she didn’t get one. Grief reminds me that she doesn’t have friends her age. She doesn’t seem to notice, but I do. I hurt.

Through all the grief and mourning, joy does come. It always does. It comes with a kiss and a hug. Joy comes with each new word she speaks. It comes when she dresses up in her cowboy hat, boots, and comes out swinging her pretend lasso. Joy comes from watching her love life in the way I sometimes wish I could.

Yes, joy does come after the mourning.

 

I read a recent blog post from another parent of a child with special needs and she stated it, too.

She is happy. She is totally fine. She doesn’t feel like she’s missing out. It’s not her dream, it’s mine.

Grief comes to everyone – unless you are a hermit who lives in a cave with no pets. As expats we must learn to go through the grieving process, to embrace it knowing that it will pass. And as a parent of a child with special needs, I’m learning that it’s okay to grieve – but that I need to not stay there. Here’s how I get out…

1. Count my blessings – you know that song, “10,000 Reasons”. I made a chart on the wall – but even just saying them out loud helps.

2. Sing Louder – speaking of songs, I put on praise music and turn it up real loud and usually break out dancing. It gets all of us into giggles.

3. Remind myself that my daughter is not sad – in fact she loves life to the fullest (most of the time). Just yesterday I used this…at the water park I started to feel sad because she couldn’t run off with the others to zip down the slide, but I looked up at her jumping in her life vest laughing and splashing around. She was fine – so I would be, too.

4. Take note of the gifts and talents that my children, especially my daughter with special needs, have. Not in a “I have the best kids in the world” kind of way, but in a “Wow, look how they are growing and giving to others” kind of way. (but, just so you know….I do have some pretty awesome kids!)

Your Turn: How has grief affected you? What has helped you through the process? Please share in the comments below.

What I’ve Learned Raising a TCK with Special Needs

I’ve had the great opportunity to write about raising a special needs child for two different websites.
The first is about what I’ve learned raising a TCK with special needs. To read more about it click here.

My other article is a comparison on running a race and raising a child with special needs. It usually isn’t the race we signed up for, but it is possible to learn all the new rules. If you’d like to read more please click here. This is part of a promotion to sell a book, in which I wrote a story for.

Please feel free to share them with friends who you might know – my hope is that a few will be encouraged.

Expat Special Needs Parent: Marriage Homework

Expat parents of children with special needs know a few secrets. They experience

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loneliness, and the feeling of “alone-ness” like other expats, but many times even more so. Let’s face it, between therapy sessions, outbursts of children, and the mobility of the expat community these seasons of being lonely are often. The last secret that expat parents of children with special needs know is the secret of marriage: Being married is super hard work

Divorce rates are extremely high for parents of children with special needs. Many sites like this one, states that the rate could be as high as 90%! That is high! I don’t know what the rate of expat parents are, but I’m sure it can’t be too far off from that statistic.

Why is the rate so high? Stress is the simple answer. Stress of money or lack of it. The cost of the various therapy classes, the surgeries, and the medical equipment required for the child is not cheap, and depending on the country you live in it can even be more expensive than in your home country. It all adds up quickly. The other factor is the stress from the demands. Children with special needs require a lot of attention. They splatter Nutella, they climb into the bathtub fully clothed, and many are toddlers running around in bodies of a preteen. The time it takes to teach, re-teach, and re-teach again just basic living skills takes away from time together as a couple. If you have other children in the home, then more time is needed for them as well. Not spending time with your spouse causes stress on many levels – communication, intimacy, friendship, etc.

With odds like that, it seems hopeless – even to me.

Hope is there, though…

It is there for me because I choose to not dwell on that 80-90%. Instead I focus on the 10-20% that I want to be in. My husband and I made an agreement when we were married that we would not even joke about divorce. When Jie Jie was diagnosed and we read the statistics, my husband boldly told me that we would work harder to maintain our marriage, that he’d work harder to keep our marriage a priority~I’m such a blessed woman.

Has it been an easy road laid with flowers and fairy-tale music playing in the background? Wish I could say YES, but I have to be honest. It has been tough, and I mean T.O.U.G.H. I’m married to a great guy. He is. He’s patient with my emotional whacked out side that comes out after I’ve had five days of not much sleep due to a little girl (or two) walking around the home in the middle of the night. He’s great, but he’s not perfect. And sadly, neither am I. It takes work.

I want to share with you what we do to keep our marriage strong. We’ve been married for 14 years this July, but these idea were shared with me from couples that have been married much longer than we have.

We choose to make time for each other. That’s it. It’s simple, but it works. We’ve had seasons of “date” nights, where we went out once a week on a date. We had a friend that could watch the kids and we’d catch a movie, supper, or something as simple as coffee. Now, we are not able to go out as often, but we still take day trips or spend a night at a local hotel every once in a while. Since we can’t go out as often on typical dates, we take an evening walk. We are able to do this after the girls are in bed asleep and our son is still awake. We walk around our neighborhood and talk about jobs, problems with kids, future moves, and whatever else that comes to our minds. It’s been a great way to stay connected.

Your Turn: Maybe you don’t have children with special needs, but what do you do to keep your marriage strong? Please share in the comments below.

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Combating Alone-ness in Expat-land

A few weeks ago I wrote a response to an article I read about raising kids with special needs and the reasons I think that they run true for an expat. One of the reasons was “Loneliness” due to mobility of expats and the fact that we live so far from family. This week I want to look at “alone-ness” which is different than being lonely.

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From the Merriam-Webster online dictionary, “alone” means to be separated from others. As a parent of a child with special needs, I do feel at times “separated from others.” The needs of Jie Jie are not like the needs of most expat families.

Jie Jie was tube fed her first six years of life. When visiting family in the US, we’d have checkups with the doctor and I’d stock up on feeding supplies that we needed to get us through a year or two. One spring, we had enough feeding tubes to make it back to the US – or so we thought. At church one Sunday morning, her feeding tube came out. Normally, this is not a huge deal because I always had one on hand for emergencies. The problem this Sunday was that the “emergency” tube was the one that broke. We had no more. We were able to creatively keep the tube inserted and feed her until we could see a doctor. Alone-ness surrounded me – although every single expat wanted to help, none could.

I was separated out from the others.

We contacted the company that made it and they located the exact feeding tube we needed in the same city that we lived in. The doctors there had just started using that type of feeding tube, so they were quite a bit more expensive – but we could get it the next day.

So, how do I combat this feeling?

1. Make friends with the locals and search out other expat families. There is a language barrier sometimes, but I have found a few who even have the same syndrome as Jie Jie. I am able to ask what is available for treatments, where to buy things, and even what they do for various situations. If you hear of another family, contact them and find out what they know and do with their child. I just recently discovered online speech therapy this way.

2. Online communities. Since Facebook, groups have formed for all kinds of things. I have found one that is a community of families that have children with the same syndrome as Jie Jie. It is here that I can post questions about development or other questions I feel I can’t ask. I also gain encouragement from the others that post about their children

3. Pray. Yep, I pray and ask God to give me wisdom in each situation. I go back and remind myself of his promises, his faithfulness, and his goodness. I remind myself that really, I am not alone because just as Moses promised Joshua, in Deuteronomy 31:6, “[God] will never leave you or forsake you,” I know that as a follower of him, he will never leave me or forsake me either.

So, though at times I have felt very alone and even hopeless – I’m not. There are people around me. I have a great husband who is a great team player, but we do have to be active in protecting our marriage. I’ll be writing a post on this huge topic soon.

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