Feeling a Bit Lost?

Have you ever felt lost? I’m slightly directionally challenged, and before GPS there were times I’d be driving and suddenly I was in a town or city where I hadn’t planned on being. Sometimes that was scary, sometimes inconvenient, and sometimes it was fun as I discovered new places.

I accepted this about myself and used it for my benefit. When I moved to a new location, I’d just drive around, get lost and find my way home (with the help of a map) repeatedly. After doing that a few days, I had a pretty good mental map of the area and would no longer get lost or need to refer to a paper map very often.

The thing is, I had a goal, a destination. Even though I didn’t take the most direct path, I was not wandering aimlessly; although, if anyone was watching, it might have appeared to them like I was. I had a destination in mind, I just didn’t know the route to get there. Sometimes my life feels like that.

There have been seasons in my life where I’ve found myself in totally unknown, unfamiliar territory – like when my son was reacting to every food I fed him and I had no idea what was going on or what to do. Or when it was obvious he had significant developmental delays and major sensory issues that prevented us from going to most public indoor spaces and turned our lives and routines upside down. Not even upside down, it obliterated any type of normality.

It was just like showing up in a town where I hadn’t expected to be and having no idea how to get to my destination. Only, there was no map for reference to find my way. I just had to try one route and see if it got me where I wanted to go. And if it didn’t, try another.

Does this doctor have answers? No. Okay, how about that doctor? No. Well, what about this therapy or that intervention? No answers in western or allopathic medicine? How about in alternative medicine? And I just kept wandering, referencing various research, and trying different routes until we made progress in the direction of our desired destination – the ability to eat foods without reactions, improve cognitive function, and stabilize or decrease sensory sensitivities.

Wandering, feeling lost, and not having clear direction feels uncomfortable. It’s scary. Thankfully, I have a personal relationship with God who loves me, knows all, and sees all.

Even though I may feel lost and not know where I am or how to get where I’d like to be. He knows. He knows not only my practical needs, the destination He has in mind for me, but also what my heart, mind, and soul need along the way. If I stick with Him, ask for, and follow His guidance, not only will I get to the destination He has planned for me, I’ll be a better person when I get there. (If you don’t know Him, I’d be happy to introduce you.)

I’ll leave you with a poem I love from Corrie Ten Boom. If you don’t know Corrie’s story, she was a Dutch lady who helped shelter Jews during the Nazi occupation of the Netherlands. She went to a concentration camp for it and lived to tell her story. So, she knows a bit about dark, hard circumstances in life when you don’t understand and don’t know what’s ahead on the journey. Her book The Hiding Place is a worthy read!

To download your own copy of this poem, click here.

Sarah McGuire is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here.

The Waiting Room

Before I had children waiting rooms served one purpose.  They were a place to wait.  I’d look forward to those few quiet moments to flip through the pages of a Better Homes and Gardens stashed in the pile of outdated magazines.  I would exhale.  I would zone out.  I would be still.  Then, I would hear my name called and forget I was ever there. 

As a mom, and especially as a special needs parent, I very often find myself in waiting rooms.  However, the waiting is altogether different…

When I’m waiting for my child to complete testing with the school psychologist, or finish a session of occupational therapy, or therapeutic gymnastics, or swimming lessons, the list goes on, it’s never a time of exhale. I am zoned way in.  I am far from still.   It’s often a time of held breath.  It’s a time of anxiety.  I am almost always lending one ear to the task of waiting for signs of the session going awry or hear myself be beckoned to the room.  I can pretend to flip through the pages of a tattered magazine left for waiting parents, but it’s just to fill the time with any kind of distraction.  That is, unless there is another waiting parent there.  That’s when magic happens.

In these places of waiting, special needs parents find each other.  We are all so desiring of community and relationship with people in our same, or similar situation, that when you sit two of us in a room together, we just get to chatting.  A smile.  A greeting.  Then, before you know it, you’ve exchanged stories, you have shed the anxiety that you may have entered the waiting with and are sad when the waiting time ends.  You might, in the case of a recurring appointment, get to see this parent again. You might not. 

Regardless of that, in the midst of these sometimes frantic days, you connected with someone who gets it.  You were given the gift of a pause, a judgement-free exchange and probably even a shared laugh or tear.

I skip out of these chance meetings feeling so heard and so understood and with such an incredibly full cup.  What’s even more magical is when a bonafide friendship begins to form in the waiting room.  I’ve experienced that a few times on this road.  Imagine that, meeting a person in a waiting room, of all places, and bonding nearly instantly over this shared journey.  You just never know who might be waiting with you.  

I can admit that those peaceful days of leisurely and seemingly carefree times of solitude and reflection were nice.  Okay, very nice. They were maybe even dreamy.  I can share too, that this new type of waiting is far more fulfilling. 

If you find yourself waiting nervously for your child to finish up their speech session, pick your head up from that magazine, or from your phone, and look around that room.  Drum up some conversation with the parent next to you.  Even if it feels clumsy or awkward at first, don’t let that stop you.  Push through and take a chance. Odds are they are desiring connection, too.  You will both be blessed by interacting, and you may just make a treasured new friend.  

Written by BreAnn Tassone

BreAnn is a wife and mother to two beloved children.  Her 8 year old son is twice exceptional and has been diagnosed with PANS/PANDAS, and her 3 year old daughter is his most incredible advocate.  They both bring joy to this world in their own individual ways. BreAnn lives with her family in central Virginia.  She is a former Special Education teacher and serves as a volunteer at her church within the special needs ministry.  She is a homeschooler and coordinates groups and events within her community to support the childhood experience of her neighbors and friends. It is her conviction that all children benefit when all children are included, accepted and can live this life learning from and supporting each other.

Who Needs Some Grace?

As we step closer and closer to the start of the 2020-2021 school year, for most of us, there are a ton of unknowns; more unknowns than I would typically encounter with the start of the school year.  All of this has me spinning in a perpetual whirl of worry and confusion and wondering,

“Am I doing the right thing?”

For me, there feels like so there are many choices but none of them are the ones I feel really good or excited about. 

A few weeks ago I was spinning in a sea of worry about the Fall and the idea of needing a lot of grace and understanding in this season was impressed upon me.  I began thinking of all the people I would be extending grace to this Fall and all the people that would be extending grace back to me.

1. My kids- This is ALL new for them. This is disappointing, hard, confusing, sad and filled with unknowns. There is a big sense of loss for their connections with their teacher and their peers. 

2. Their teacher- Teachers have not been taught to teach like this!  As a former special education teacher, I can not fathom how I might prepare for a semester of teaching my students online.  I know the heart of most teachers is to be with kids, lead them to love learning and be successful, thriving students.  What most teachers are having to prepare for goes against how they were wired at their core to care for kids and ignite a strong desire for learning.

3. Other families- The more I talk to people, the more I become aware that everyone is experiencing this differently.  There are a small number of people who are thriving in Covid, a few that are really struggling and many that are somewhere on the spectrum in between.  This range of views and sentiments towards this disorienting experience is hard to navigate with other families and friends.  

4. Myself- I have the tendency to try to control things more than I should. I have struggled to strike a good balance of being all the roles I am needed in in this season.  There is simply not enough time and energy to do all of this to the full extent.  

5. My spouse- He is a fabulous supporter, cheerleader, and a loving husband and father.  Part of his day is spent out of the house working his full time job.  Sometimes, the ability to leave the house feels like a special privilege, especially when I think about what my day will entail.     

6. School administrators/IEP team- My daughter’s intervention team tried to meet just after school closed in early March.  At that time they didn’t even know how to sign documents to initiate her evaluation.  As the months have passed, they have figured out many things, but there are still so many unknowns. Her evaluation has not even been initiated! Her accommodations are mostly supports I have to implement at home for her success in a virtual format.  With no manual on how to navigate this we have had to be very patient with the school team and offer them a lot of grace as they try to figure out what to do.  I am not implying that we compromise our child’s education for the circumstances, but offer a large measure of patience when working through the challenges as a team.

The list could go on, to include employers, immediate family members and many more. 

So what does extending grace look like practically?  Being OK with the unknowns, things being slower, loud and messy.  Maybe this looks like doing the opposite of what you are inclined to do or say.  

Maybe grace in this season looks like focusing on personal self-care.  Taking small moments of deep breathing, breath prayers, walks, enjoying nature and going to bed earlier are some simple ways to care for ourselves during the day.  Try using some of the sensory strategies we use with our kids on ourselves to remain calm. Make yourself a cup of tea and look out the window for birds.

Maybe grace in this season looks like stepping up our organization game. Packing lunches the night before, laying out clothes and waking up earlier can help us be able to better focus on the hard things that we will encounter during the day.  Creating visual schedules and using timers or alarms on our smart devices can help us not miss the virtual check-ins with the teachers.  

But maybe ultimately grace in this new school year can look like us being more realistic, more loving and more flexible with everyone and everything we encounter.  And ultimately, that is the example I want to set for my children, as now more than ever, they are watching me and learning from my actions.

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

We’ll Get Through This

We’ll get through this.

 Those are the words I was about to type for the beginning of this post when the tornado siren blew. I grabbed my computer and phone and ran through the kitchen toward the basement apartment where our daughter and her family live.

She met me on the stairs. “Mom, tell the construction crew to come inside.”

10 minutes earlier  they’d been in the footing trenches for our house addition, building forms so the pumper truck could pour concrete. Now they were running through driving rain to their truck.

I opened the front door and flagged them down. Soon my daughter, my son-in-law, my grandkids and I were sharing the basement with 4 strangers sheltering from the storm together.

None of us had masks. We stayed as far from one another as we could, and we watched as the storm intensified. The electricity flickered and went out. A doe and fawn ran across the back pasture desperate for cover.

The construction workers called to see how their families were. My husband called from work to see how we were. “We’re okay,” I said. “We’ll get through this.”

After a half hour, the storm let up and the construction guys left. “Let’s hope no one gets COVID,” I said once they were gone. “We had to choose between possible death for them and a slight risk of sickness for us,” my daughter replied. “We made the right choice.”

We went upstairs a few minutes later and found trees down, our yard light down, electrical lines down. Miraculously not one branch had landed on our house, our camper, or our cars. The damage was a new bead to add to the string of challenges weathered by our family over the years.

My mom’s family survived the Great Depression by shooting pigeons and raising vegetables. She was in high school during World War 2.

My parents weren’t even 30 when Dad was diagnosed with multiple sclerosis. Mom furthered her education while teaching school, raising 3 kids, and caring for Dad.

My husband and I cared for our medically-fragile baby while living 70 miles from a hospital. That baby lived with PTSD for 26 years before it was diagnosed and treated.

Floods, blizzards, ice storms and more in our 43 years of marriage.

Now this unusually ferocious and widespread rain, wind, lightening, and thunderstorm. In the middle of a pandemic. While building an addition onto our house.

Our family, like yours, has an ever-growing string of challenges. I, perhaps unlike you, have doubted God’s goodness during the worst bits of them. But in every case, once the bead is knotted in place, I look back and recognize the same two life-giving truths.

God was present with us from beginning to end. And our faith is the stronger for it.

This morning, still without electricity, my husband headed outside to cut up branches and haul them away. On his way out the door, he smiled and said, “We’ll get through this.”

With all my heart, I want you to know that what my husband said is true. Whatever your hardship or challenge is today, be very sure that you will too.

Nevertheless, the righteous shall hold to his way,

And he who has clean hands shall grow stronger and stronger.

Job 17:9

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

Are You Feeling Stressed?

It's August! What does August bring to your mind?

For me, it's still lots of summer memories. Garden harvest. Sweet Corn. The grass gets a bit brittle underfoot as less rain and hot days combine. And now, school.

Growing up in Michigan, school couldn't start until after Labor Day due to all the farming families. But in Indiana, school starts around mid August. Now on our 11th year of homeschooling, I've come to like starting school at the beginning of August. I use the term "like" loosely. I don't like starting school then, but I find it very beneficial and I like the benefits.

Why?

First, in Indiana homeschool law says you do school for 180 days. I've found that our family takes a lot more days off here and there throughout the year - canning peaches, plums, pears, running errands, appointments, I travel for speaking at conferences, etc. Those days add up, so if we don't start our year early, we don't finish until well into summer weather. Which in the north, is when you can't wait to get outside after the long winter and motivation for school work quickly dwindles for everyone, me included, when the robins start chirping and sunshine beckons.

Second, after several weeks off without a lot of directed activities, which at first is amazing, becomes well, stagnant and idle minds (even if bodies are active) start to wear on each other. So, while I get reluctance and groans about starting school again (afterall, they are boys and not the kind that love academic work), life, routine, and direction helps things run better in the household. Some years I start slow and ease into it, sometimes we jump right in with a full schedule.

This year, I'm prepping for a cross-country RV trip for the next 9-10 months (we leave in less than 2 weeks!) and I'm a little too busy to take on teaching right now, so we are starting with online electives where they'll each complete 1 course this month while I get things around for the trip and we hit the road. That will give me a couple weeks to get up to speed on the learning curve of RVing as well, before we dive into the full school schedule.

Whew, so that was a bit of rambling and sharing what our August looks like. Why do you care? Well, if you hadn't picked up on it, another theme of August is often STRESS! How many of you can relate to that? New things, new teachers, schools, schedules, establishing different routines, early mornings, deadlines, adjustments. For some of our group, it can also be a stress relief - to again have a team of people helping do the heavy lifting of daily care, therapy and interventions. But it often comes with anxiety about how will the new teacher, therapist, etc mesh with my child?This year, with COVID-19, it's magnified - it's not just a new school, a new routine, but school as it's never been done before. And for kids who can't tolerate change, yikes! 

So what is a STRESSED OUT mama, or dad, to do?  That's what August is all about here in the Hope Anew - STRESS RELIEF  or more accurately, STRESS MANAGEMENT!

Because we all know all those responsibilities aren't getting relieved anytime soon, so we we need to pay attention to managing the stress, and yes, stress relief, because as we "manage" it can reduce our stresses in life and we can work the stress out of our bodies.

Who's ready to get some stress relief with me? Woot! Woot!

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

 

Due to COVID-19, Hope Anew is waiving all membership fees for the community!

To My First Born Son On His 18th Birthday

18 years.

18 years filled with laughter and love and sometimes heartache and tears. 18 years of watching every milestone and “checking it off” – feeling like we accomplished something. 18 years of watching some milestones pass by and realizing we still haven’t met them and dealing with the grief that these are the milestones that you may never meet.

But as I write, I realize you have risen above my expectations I had for you and I know you will continue to. It’s because even though there are many things we may have ahead to learn there are things you have taught me and others.

…you have taught me God’s sovereignty. From the moment I held you I knew He had a plan for your life. When we found out about the Down Syndrome, I didn’t understand why God had chosen this path for you or me. As the dust settled and the tears dried there was one passage I clung to. The passage is in John 9 when Jesus heals a blind man. Although I knew that “healing” was not the answer for a genetic condition. This scripture helped me find an answer for why God chose this path. Jesus’ answer is in verse 3. Jesus’ followers were baffled. Why was this boy born blind? Obviously someone sinned . But Jesus responds “he was born blind so that he could be used to show what great things God can do.” Now 18 years later I am able to see so many of these great things. I have learned it’s not my fault or that I’m being punished . These verses remind me that your disability is anything but that. The plan God had all along for you is a gift so that you can display the works of God through your life and your unprejudiced mind and heart.

… you have taught me patience. Every step of this journey together has been slow, every milestone, every word, every year of school, every IEP – a lesson in learning to be patient in God’s timing. While I’ve spent days, months and years waiting for each step, It causes me to think how patient God is with me. So many times it takes me so long to learn things that I’m sure God feels like he has tried to teach a million times over. You are my visible reminder that God brings beautiful blessings in His time if we just wait.

…you have taught me to laugh. You are silly. Always trying to make me laugh. And always laughing. You can make anyone laugh and you know how to laugh at yourself. And when I start to take life too seriously you are there to help remind me that life is too short not to laugh a little.

…you have taught me to see things through different eyes. To catch a glimpse of what really matters most. Not the little events of life but the way these events affect our soul and others. Your concern when others are sick, or sad. The way you never want to make anyone mad. The way you put others first. I often wonder what the world would be like if we all saw others through your eyes.

…you have taught me unconditional love. You give and accept love from others with no conditions. You share love so easily and I’ve seen you hurt because of the way you love someone or something so hard. Your heart is so big and filled with so much love for the people you know. You have taught me that loving is not about what we want others to be but about loving them as they are. It’s about loving me when I have a short temper or snap at you. It’s loving like Christ … not because of anything I could do but loving because that’s what you are.

I’m reminded of the old hymn, “Come Thou Fount,” it speaks in the second stanza of raising an Ebenezer. Strange language isn’t it? The prophet Samuel set up a stone after the LORD helped Israel win a great victory. This was not without repentance and seeking the LORD on Israel’s part. They had to put away their false gods and pray. The stone, named Ebenezer, commemorated that victory, for “Thus far the LORD has helped us” Whenever the Israelites would pass by the stone, they would remember what they were capable of, and how the LORD acted on their behalf.

So you my son are my true Ebenezer. You are the physical reminder of God’s faithfulness and goodness. In 18 years you have taught me all these lessons and more. You remind me daily what the Lord is capable of doing. And you show me daily that God has and is still continuing to teach me more about Himself through you.

So HAPPY 18TH BIRTHDAY Bub. You are so loved!

Written by Leigh Ann Kaman

Leigh Ann Kaman is a wife and mom to three kids, one of which has Down Syndrome. She advocates in the special needs community and has started a ministry in her church for those touched by special needs. She is also actively involved in Capernaum, a ministry of Young Life for young adults with disabilities. Writing about her life as a special needs parent has always been her passion. 

What’s In A Name - Hope Anew

Oh the anticipation, dreams, hopes, excitement, preparation and thoughts that filled our hearts and minds as we eagerly awaited the arrival of our first child! And one of the questions uppermost in our minds…what were we going to name him? To us, a name is very important. Pick the wrong name and the child could be made fun of for the first two decades of his life. We talked through hundreds of names – some reminded Jonathan or I of people we didn’t have fond memories of and we didn’t want our son to carry the same name. Some have common nicknames we didn’t like. Some one of us loved, but the other hated. Some we liked one week, not so much the next. Some were just meh. 

The meaning of the name was also very important, and we believe a child very often grows into the meaning of his name. As we talked through possibilities, one of our favorite names meant “firebrand”. While that could mean he would really make a mark on the world and leave a lasting legacy, it could also mean that he could be a hellion to rear, exciting pain or danger wherever he went. Yikes. Mark that one off the list. It was quite a process, but we finally arrived at a name we both loved and still do.

The process for naming Hope Anew wasn’t too different, except that baby name books were no help, and URLs that were already taken figured heavily into the decision. But, the significance of the name was important. Again, we talked through many possibilities before we came up with and then settled on Hope Anew. As soon as Jonathan said it, I loved it. We checked the URL – available! We put it in with two other top name options and asked friends and family their opinions and Hope Anew won hands down. 

Why did I love it so much upon first hearing it and grew to love it more and more as I continued to think about it?

Here are my reasons:

1. Hope. After the early years of a having a special needs child when I lived in crushing anguish, broken dreams, darkness, and hopelessness, hope was my #1 need. Like water in a wilderness, hope to a downcast soul brings life, renewal, healing, a way forward. Hope is an absolute necessity, yet many find it elusive! Having “hope” in the name of an organization where the support of parents with kids impacted by special needs and disability is the sole purpose and focus…brilliant idea!

2. Hope. Hope points to the true hope we have in life and this world…God, His son, Jesus.  Salvation, certainly, but also His faithful love and care for us here and now. A sure hope. Not the common, modern definition meaning, “a desire” as in, “I hope you have a nice day.” But rather the archaic definition, “trust, to expect with confidence, reliance” and the biblical definition, “confident expectation of what God has promised, and its strength is in His faithfulness.”  This isn’t a, “I hope my son gets better”, “I hope this therapy works” kind of hope. But rather a, “No matter what, God loves me, my child, and I can trust He sees the big picture, has a plan and will work thing together for our good even in the midst of this very broken world.”

3. Anew. Gaining hope again in the parent’s journey. I don’t know about you, but I certainly went through periods of time (years) where I had lost hope. No hope. No future. Darkness, all was darkness. Hopeless. I felt embarrassed, guilty, weak. I learned that is a common part of the special needs parenting journey. You don’t need to feel embarrassed, guilty or weak. Goodness, your life just got flipped upside down. All your hopes and dreams were shattered and scattered, and you have NO idea which way is up, let alone what’s ahead! No one has given you a map with “You are here” marked on it. For Pete’s sake (sorry, Pete, I don’t know who you are or why your name is used for this expression), you’re just trying to figure out how to make it through the next minute of crisis (aka your new life)! BUT, after that yawning chasm of hopelessness, darkness, brokenness, when you climb up and out on the other side, there are new dreams! There is light! There are less crisis, or at least a well-trod action plan for how to handle the next crisis. You can begin to see traces of God’s faithful care of you through that chasm and all those crises. He didn’t abandon you after all, even though it had felt like He had.  And now you gain the reassurance, the knowing deep in your soul, He’ll also carry you through the next one. Hope blooms anew, rebuilt, stronger, steadier on the far side of that chasm. Hope Anew.

What is in the name Hope Anew? Hope, a sure promise we can count on from a faithful God to carry us and love us as we walk through a broken, hurting world and pick us up and grow us up in our understanding of Him after we have lost our hope, vision and dreams.

Oh, and our eldest son – his name is Josiah, meaning “God supports, heals.” You might have some insight into the extra pressures on siblings of kids with special needs. I’d say avoiding “Firebrand” and going for “God supports” was a good call.

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Due to COVID-19, Hope Anew is waiving all membership fees for the community!

Summer Memories

Ahh sweet Summer memories...this year has put quite a twist on any memories.  For our family, it felt like Summer essentially began in mid-March when the kid’s schools closed for COVID.  Although we tried to stick with the programming our country sent home, the plans didn’t really work for my family. 

With a background in special education, I was ready to improvise and try to keep our family moving in a positive direction.  We began adding special things to our day to help each day feel different from before.  We worked on some school and some character building.  We tried to learn to love the people in our house really well.  While some of those things were easier than others, we made the days pass until school was “officially” over as best we could.  

It has been a relief to give a close to the 2019-2020 school year and step into true “summer mode”.  

My family has never been one to plan a typical week long vacation during the summer but rather take advantage of smaller opportunities as they come up and fit with the needs of the kids.  We found so often in the past, planning a week long vacation never came at a good time.  With the anticipation of the trip, challenging behaviors swelled and thoughts and doubts like “This is not going to be a vacation at all!”, “What was I thinking?” filled my mind and heart.  We would walk into those vacations stressed and trying to calm an overstimulated/excited kid.  On top of that, we often had a sick kid.  My daughter seemed to be often sick and always right before our trips. Needless to say, it was not a good memory for my husband and me, let alone the kids. 

While we have escaped illness through building her immune system and more likely limiting contact with COVID concerns, advance planning and long trips just doesn’t work for our family.  We have settled into the spontaneity of short trips and day visits that work well for us. The difficult part for me is fighting the comparison of other people’s experiences.  I can often lose myself in the pictures and narratives people post of their vacations.  While a picture is only capturing a moment and most of the time only the best moments, I can still be tricked by someone else’s experience, thinking mine is insufficient in some way. 

Since “Summer” abruptly began for us in March, we began a paper chain of good things from our day.  The idea at the time was I wanted and needed a way to know when life would go back to a normal rhythm. I wanted to know when the bus was coming back down my street. I wanted to know when I would have my 2 hours to breathe and run my errands, squeeze in a work call and brush my teeth before noon!  Since that was a big unknown and still is, I wanted to mark each day with a positive by adding links to a paper chain. 

The kids and my husband got into the idea and each night at dinner we add a paper link to mark a happy memory from our wacky day.  There was always something to add.  We have continued with this each evening adding different color links to mark the happy memories amidst the blur of days that drag on.  Each day still feels like a tiring Saturday in which my husband and I are trying to work and nurture children.  In the middle of this grind, we are able to intentionally acknowledge the good things with our children.  The paper link helps each of us look for the happy and still anticipate the future with joy.  My middle daughter asked the other night if we could decorate the Christmas tree with the paper links.  We are 5 months away from Christmas, but she is already looking forward to it. For me, thinking ahead to Christmas reminds me of the ground we have already covered and the challenges we have overcome with so much change and unknown in our life all at once. 

Reflecting on the time and memories captured in these links gives such a positive view of what we have gone through and a hopeful outlook for the coming months.

This summer is off to a good start for our family.  We are sneaking quick trips in between virtual summer school and tele-therapy sessions.  The great joy comes at the end of the day when I get to hear what part of the day was remarkable for one of the kids or my husband.  We have added links saying “swimming” in the spout pool, berry picking, finished the first chapter book alone, took off training wheels, beautiful sunset and someone even added time as a family…  

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church. 

Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church. 

Naomi loves to run, sew and take walks with her husband with any free time she has. 

Focus On The Good

There is simply an overwhelming number of things that I can genuinely find myself concerned about at the moment. What hasn’t been turned on its head, what hasn’t been pushed to the limit?! My head is spinning just trying to keep up with the changes that have had to happen within our family home to make any learning happen over the last couple of months, and now the changes happening outside the home looking towards summer as lock down eases slowly but surely.

There are days when the concerns could drown everything good out. And it feels as if I run from one problem to quickly trouble shoot the next. Juggling constantly just to keep everything and everyone going as we all struggle to adjust to new ways of having to work, not being able to meet people the way we’re used to, and not having the usual supports and routines to lean on. In the midst of it all, I’ve been asked to take up a paid job – part time thank goodness – and a huge privilege to be offered. I’ll be working in our local high school as their chaplain. One of the things I get involved in as you can imagine is delivering reflections and collective worship opportunities – all virtually at the moment of course. This week I’m putting together (in between everything else on my plate) some thoughts about resilience and staying positive.

I’m looking at a little verse from the Bible, in a little letter called Philippians. After reminding us to take our worries to God in prayer it says this:

‘..whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy – think about such things’.

Sound advice – written well before mindfulness and CBT became ‘a thing’ here it is – a little note from God simply reminding us how good it is for us to put our focus on the good stuff. Let’s face it, we never need reminding to focus in on the negative! How I need reminding to look for the good in the everyday.

Moving into summer, I want to find some time to document the good we’ve shared during this surreal and unexpected few months. I’ve taken photos of all our new experiences, of us doing our work in new and strange places in the house – of the tent where our youngest has done her school work (when willing), and of all the moments of unexpected laughter and fun. I need to remind myself that there has been good, and beautiful alongside the tough and relentless.

I wonder if we might all jot down our best memories of the month, or draw how we’ve felt when we’ve had a fun day at home together so that, together with the photos, we can put together a family scrapbook of our experience of lock down – reminding ourselves to focus on all that is good in the midst of what has been, for many of us, a really hard time!

Written by Cathy Porter

Cathy and her husband, Andrew, have 3 children. Her two girls both a diagnosis of ASC. You can follow the ups and downs of family life & faith on her blog: www.clearlynurturing.wordpress.com.

It is Cathy’s heart to encourage families to share in the adventure of faith together, especially families beautifully shaped by ASC. She loves to write stories that make the reader think, ask questions about what we believe, and help the reader to discover what the Bible has to say about God and friendship with him. 

Summer To Remember

It’s July! This means the start of a new month and a new theme in our online community! What memories, thoughts, scents, events, and feelings does July inspire for you? 

For me, it's the feel of sunshine on my skin. Thoughts of parades, fireworks, family gatherings, bike riding, picnics, sandy beaches (I grew up close to Lake Michigan), weeding the garden, the sound of corn growing, the feel of garden dirt and yard grass between my toes, playing in the sprinkler, the tastes of sweet corn dripping with butter and watermelon. 

As I think of this, I realize these are mostly all from when I was a kid.

Since I've become an adult, I have rarely taken the time to slow down enough to soak in the sensations, scents and joy of summer. Summer was my favorite season as a kid. While I now also love spring and fall, I still love summer. My birthday is also in July, so that's just a cherry on top of the already delicious treat of summer! 

As I reflect on these memories, I want to enjoy them again and create them for my kids. Not only will this create amazing memories for them, there are other benefits too! Like strengthening our family and relieving stress, and who of us doesn't need a little - or a lot - of stress relief! 

So, our theme this month is (drumroll)... Summer To Remember!!!

And we mean this in a positive way, not because of the pandemic, lol. We can create times of amazing memories with our family regardless of the pandemic. Activities can be simple and cheap or free, simply by intentionally selecting some activities to do together this summer and checking them off as you go can help make your summer a Summer To Remember!

We have a cute, free download graphic chart for you to print and fill in with your family. Get suggestions from your kids and significant other and write them down. Plan to incorporate them throughout the next month or two and check them off as you go. If you are challenged coming up with ideas, we've got you covered. We are also offering a free download of 101 ideas for you to use as-is or to help jump start your own ideas.

Don't make it overcomplicated or something you have to put a lot of energy or $ into and let that stop you. Did you notice the things I remember about summer from my childhood? Grass and dirt between my toes - how often do we walk outside barefoot now? Soaking up the sunshine. Cloud shapes. Watermelon. Playing in a sprinkler. Stargazing.

These are your action steps:

1. Print the chart and 100 ideas list. 

2. Choose ideas from the list or brainstorm your own.

3. Fill in your family's chart. 

4. Begin making it a Summer To Remember!

5. Share your adventures with us in the community! We can't wait to see all the memories you're making with your family.

Join us in the Hope Anew Online Community to get the free downloads. Go to members.HopeAnew.com and join for free!

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

 Due to COVID-19, Hope Anew is waiving all membership fees for the community!

Quarantine Has Changed Me

This time of quarantine has been challenging. It has been no small task to take a large step outside of the roles I normally hold to fill the roles that quarantine requires of me. It has been a challenge to decrease the freedoms I have at my disposal. But it also has been a time of readjusting the expectations around my life and that has been a huge benefit. I wanted to take a few minutes to share some of the positive changes that have come out of this time.

1.  I like to go-go-go. It has been life altering to suddenly have to stay in place. I have literally had to learn how to sit on the couch and just BE. In the first days of quarantine I somewhat panicked about this, but much to my surprise I have enjoyed this slower pace. As things being to open and schedules threaten to get busier I am finding myself really weighing the benefit of an added activity. Quarantine has taught me to slow down and protect the time our family has together.

2.  I hate to write this one, because it sounds very shallow, but I have learned the value of “do I really need that”.  My days of heading to Target to stroll the aisles and destress and ultimately buying things I don’t really need have passed.  Amazon Prime doesn’t really have 2 day delivery anymore. And I can’t easily just run through the Starbucks drive through as the line is now 5 years long.  Basically what I am saying is my Instant Gratification habits have died. And I find myself asking “Do we really need/want that?”. And guess what that has helped? Our bank account. Isn’t is magical when you stop spending money aimlessly you have more? Dave Ramsey would be so proud! We have saved so much so that we have been able to do a couple house projects we had trouble saving for before!

3.  God is the same Yesterday, Today and Tomorrow. Our daughter is medically complex but has had a really good few years. The fear of her getting Covid has brought back some of those fears I have had about her health. When I feel the anxiety rise I just have had to come back to the simple truth that God never changes. He is good in all things. That doesn’t mean she won’t get sick, but it means if that happens we will have the strength to get through it. A good friend used to tell me when I worried, “this fear is not upon you, so you don’t have the strength to handle the situation. But God simply does not leave us alone in a fire, so if that situation came about you would have strength to walk through it”. Guess what? Those words have never failed me, and they won’t in this situation either.

4. Expectations make or break the day. This is something that I have worked hard to teach my children during this time. But honestly, I have had to consistently remind myself as well. Expectations need to be realistic, verbalized and agreed upon. I have had to practice setting them with my children during this time, especially as we learned to home school. But practicing having realistic, verbalized and agreed upon expectations has even really helped my husband and I. We go into the days knowing what each other needs which sets the tone for clear communication and mutual goals. 

The beauty of walking through hard things is the great amount of personal growth that can come if we allow the circumstance to mold us for the better. 

Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all.  Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood. 

Too Much of a Good Thing?

Do you remember pre Covid-19 when you dreamed of working from home or having your spouse work from home? Do you remember when you thought it would be so wonderful to have more time with your family or you thought it would just be so great to have your spouse home more to help support you with the parenting load. 

We’ve been living the “new normal” for a little while now. How would you say it is going? Has working from home been everything you dreamed it would be? Some of you might be thinking, “It was great to begin with but you know what they say about having too much of a good thing.” 

Working from home had been a dream of mine. I envisioned a time that I would be more available for Sarah and when I would have more time with my family. As I prayed about future goals for our family, this became a prayer of mine.  Sarah and I have had the privilege of both of us working from home for the last eight years. She homeschooled the boys, while I worked in my office. 

What started out as bliss became “too much of a good thing” at times. One common scenario looked like this. Sarah would finally get the boys focused and I would come out with a work related question or asking her to review an email. I didn’t see the big deal because in my mind it would only take five minutes to answer the question.  In her mind it was a huge deal because she had just spent the last half an hour getting them to focus and it would take her another hour to regain the boys’ focus.

In order for working at home to work and for the dream to not become a nightmare, we had to establish boundaries and set up a system for handling the different things that came up throughout the day that we needed each other’s input on.   

Some of you might be finding yourselves  having this same struggle.  You’re not used to having this much time together and your routines are not working like they used to. You might find yourself dwelling on those little, or maybe not so little, irritations that come up throughout the day.

Here are four tips to help this extra family time to not become too much of a good thing:

1.  Talk about it with your spouse. Don’t lash out about it but calmly communicate the point of tension. Sarah was able to share with me how my interruptions were impacting the school day with the kids and we were able to develop a plan. As a side note, if both you and your spouse are reading this, be prepared for your spouse to talk to you. Be safe and loving. Don’t become defensive. Take responsibility and work with your spouse to develop a plan.

2. When you focus on the negative, it is easy to only see the negative. Take captive those little annoyances about your spouse, remember that they are the same person you fell in love with however many years ago, and don’t think about those things.

3. Choose to think about the positives of your spouse and make a list.

4. Share one thing with your spouse that you appreciate about them.

It has been eight years since we began working at home together. We have each grown in so many ways. There are still days where we struggle but those are fewer and our marriage is stronger.

Written by Jonathan McGuire

Jonathan McGuire  is  the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.

Hope Anew has launched the Hope Anew Online Community and would love to have you be a part of it! You can learn more at www.HopeAnew.com.  Due to COVID-19, Hope Anew is waiving all membership fees for the community!

Count Your Blessings: A Way To Stay Sane in a Crisis

Count your blessings, name them one by one,

Count your blessings, see what God has done!

When I was much younger, I rolled my eyes every time we sang this hymn at church. To my mind, the lyrics touted a solution far too simplistic for the troubles our family faced.

Even when I did as instructed, life didn’t get better.

 My dad was sick and getting sicker. My mom shouldered too much stress as she worked to feed and clothe us. The trend continued after the birth of our son. Five years and seven surgeries into his young life, life was hard and getting harder.

 So far as the count your blessings thing went, I told God to count me out.

 Then, one day the beginning of Zechariah 4:10 caught my eye: “For who has despised the day of small things?” (NASB)

Hmmmmm. 

If my response to the lyrics of Count Your Blessings was any indication, I had been despising the day of small things for years. Maybe even decades. 

Not good. Not good at all. 

An attitude change was long overdue, and it was a hard change to make. But as I began to look for small blessings, it was easier to see and delight in them. 

And then, along came COVID-19.

 The temptation was strong to stop searching for small and good things while living through such a vast pandemic. But for my own mental and spiritual health, I kept looking for and found these 10 tiny and precious treasures.

1. The ability to walk. My dad’s 38 years in a wheelchair make me grateful for mobility every day.

2. Favorite notebooks and mechanical pencils. I don’t know why speckled composition books, yellow legal pads, architectural mechanical pencils bring great joy, but they do.

3.  Ordering online. It’s fast. (At least the ordering part is fast.) It’s easy. And it’s much safer for old coots like me who want to stay healthy until the risk of catching COVID-19 go down. 

4. Our espresso machine. Several members of our household love good coffee, so we splurged on it last summer. The coronavirus shut down feels less confining with delicious espresso at hand.

5. It’s spring. More daylight and warmer temperatures bring me joy and hope.

6. Bird song. Another daily source of joy and hope.

7. Intergenerational living. We live in the same house with our daughter, son-in-law, and their two children. This intentional living arrangement began 4 years ago, and it takes work to keep things going smoothly. To us, it’s worth it. Doubly so during the shut down. Our daughter trimmed my hair a few weeks back. Our son-in-law does the grocery shopping. And water, sewer, garbage, and energy bills are split between families. Win! Win! Win!

8. Eavesdropping on a 5-year-old at play. This could have been lumped in with #7, but listening in on a child’s make believe world is so dear, it deserves its own spot.

9. Happy birthday to me. Our 2-year-old granddaughter sings this when she washes her hands. It’s too much cuteness to lump in with #7.

10.  FaceTime. We use it to connect with our other 2 grands and with my 91-year-old mom who’s in a residential care facility. Because of #7, all our grands can visit at the same time, and Mom gets to see her great-grands. More wins!

Caregiving or COVID-19 can make it hard to count your blessings, and I get that. But I encourage you to look for them, no matter how small. They have the power to keep you sane in a crisis.

Because little things matter.

Tiny things count.

Small things add up.

And you are worth it.

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

Stages of Parent Burnout

So did you take a break last week and ask yourself if you recognize the signs of burnout in your life? Some of you just thought, “I didn’t need to pause to know I’m burnt out.” Others of you are thinking, “I’m good. In fact, I think I will make cupcakes for our therapists when I can get out of the house.”

Did you know that you don’t just wake up suddenly not wanting to be a parent or not wanting to get out of bed. Burnout happens gradually.

How many of the following points resonate with you?

• Having a child with physical or mental health challenges

• Perfectionism: feeling you need to be the “perfect” parent at all times

• Lack of support from spouse

• Both parents working outside the home

• Financial concerns

• Not enough support from outside the family (childcare, extended family, etc.)

• Finding it hard to ask for help

• Over-scheduled kids

Many of us can look at that list and can easily circle between a third to half of the points and even come up with additional points. As the stressors increase, we become more at risk for burnout. This burnout can range from mild to severe.

In her podcast episode on Parental Burnout, Krista Maltais describes the severity of burnout as follows.

Mild Burnout: Mild burnout can start with some situation that is outside your normal that causes extra stress. This can be something as basic as caring for a child or spouse that is temporarily sick. These symptoms may include, short temper and/or limited tolerance, foggy-brain, heightened sensitivity to their emotions and environment, and is usually accompanied by disruptions in sleep patterns.

Moderate Burnout: A parent who is experiencing moderate burnout, perhaps due to prolonged sleep deprivation or other stressors (such as finances, lack of childcare, limited opportunities for self care, etc) may begin to experience additional physical symptoms such as headaches, confusion, forgetfulness, upset stomach, anxiety/depression, feelings of isolation and/or overwhelm. As burnout sets in, communication with others also tends to break down which can lead to an increase in conflict, misunderstandings, etc, especially with the partner.

Severe Burnout: A parent with severe burn out due to long-term exhaustion, stress, lack of physical/emotional/logistical support, and/or physical/mental health complications, may exhibit the above-mentioned signs as well as hormonal imbalance which can further cause a loss of sex-drive, insomnia or dis-regulated sleep patterns, and additional health problems. Burnout symptoms may also present as obsessive compulsive tendencies or a multitude of uncompleted/avoided tasks due to overwhelm.

The first step in overcoming burnout and preventing burnout is the same. You have to recognize the stressors in your life. 

Next week we will look at steps to preventing and overcoming burnout. In the meantime, if you haven’t done it yet, download our free “5 Minute Vacations” guide and check out our friends at Run Hard Rest Well. That will get you started in the right direction.

If you find yourself in this severe state of burnout and are having suicidal thoughts, please seek immediate professional help. The number for the suicide hotline is: 1-800-273-8255.

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” ~John 16:33 (NIV)

Written by Jonathan McGuire

Jonathan McGuire  is  the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.

 

Hope Anew has launched the Hope Anew Online Community and would love to have you be a part of it! You can learn more at www.HopeAnew.com.  Due to COVID-19, Hope Anew is waiving all membership fees for the community!

Why Am I Struggling So Much?

Do you ever wake up and not want to get up? Do you ever lose your motivation and drive? Stay awake at night too late just vegging or zoning out? Snap at your spouse and everyone around you? We go about our day to day lives, caring for our kids, spouses, and selves handling what needs to be handled, doing the tasks that need to be done, mediating the scuffles that arise, and a host of other things. You used to have motivation to do all the things, to tackle the challenges, to meet the needs, to love others well in a peaceful way. Now you feel sad, angry, grumpy, tense, or unmotivated.

So, what is going on? What has changed? Why are you struggling?

 As a parent of a child with special needs and disabilities, you aren’t alone. The more parents I talk with the more I see this as a common, almost universal struggle. It may not be all the time, and it can be more pronounced in certain seasons of life and circumstances. And, I’m seeing it strongly right now in the general population with the Coronavirus stay-at-home order. Why?

One of the main reasons is grief. Grief is not only experienced when there is death, but with any type of momentous loss. This includes the loss of what was expected or anticipated in the future but will now not happen. This might be the hopes and dreams you had for your child and for how your family would look, activities they would do together, social interaction with family friends. But, the child will never accomplish those things, the family can’t do those activities, and the friends deserted you when you had a child with special needs. It might be a vacation you had planned or a graduation ceremony and senior year events with friends that won’t take place. It could be a lost job or every bit of “extra” income going to pay for therapies and treatment instead of a night at the movies or a vacation.

Grief has five stages: denial, anger, bargaining, depression, and acceptance.

These stages aren’t linear, so just because you dealt with anger yesterday that doesn’t mean you’re done with it for good. No, you can go through the stages repeatedly and can bounce back and forth between different stages. You may stay in one stage for a while or you may experience all of them in one day. A participant in one of our group Hope & Healing Workshops once commented that they felt like they were in the tumble dry cycle of a clothes dryer and that can sum it up perfectly.

 What do you do about it?

1. Acknowledge it. Name it. Simply identifying it and naming it can help so much.

2. Express it. That will look differently for different people and personality types. It may be writing in a journal, talking with a friend, having a good cry, writing a lament, expressing it to God, etc.

3. Shelve it. While this isn’t a good long-term plan, it is sometimes necessary in the short-term. Sometimes in order to deal with what needs to be done right now in this moment, hour or day, we can’t take the time to deal with it because it would stop us from handling the current situation. But, still name it, “Oh, that’s grief. I’ll need to deal with and express this later for my emotional, mental, physical, and spiritual health, but I need to set it aside for now so that I can complete _____ task.”

4. Express it some more. Grief comes in waves and just because you acknowledged it and expressed it once doesn’t mean the process of grieving is complete. It will usually take repeated expressions of it before you are ready to move on, especially with more significant losses.

5. Don’t let yourself get stuck there. If you only ever focus on the loss, you won’t be able to move into the future and build new dreams. This doesn’t mean you deny the reality of what you lost, but it does mean you say something like, “Yes, I lost ____ and that is significant, hurts terribly, and I will continue to grieve it sometimes. Yet, I have ______ and while it will be different than what I wanted, expected, and hoped for, life can still be beautiful, good, and purposeful.”

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Due to COVID-19, all membership fees to the Hope Anew Online Community have been waived!

A Better Way

Here in Illinois we are in week 4 of the Coronavirus lockdown and our house is rapidly edging toward stir crazy. I am used to working from home. Pretty much no one else here is. My wife is a raging extravert and my daughter, a sophomore in high school, desperately wants to see her friends. Our oldest can’t go to work because it is shut down. Even my autistic son Nathan, who is in a transition program he doesn’t really like, wants to go back to school. Online school simply isn’t the same. His mom has been his paraprofessional and she is tough.

For most of us, the coronavirus pandemic is inconvenient, but for others, it really is causing suffering: people are dying from this disease, businesses are failing because they cannot operate. There is going to be fallout for some time to come. Just like our series looking at the causes of suffering related to our special needs children, many of us are asking why this pandemic is happening. Is it our fault? Is it God’s fault or the devil’s fault? Is there no fault at all? What are we to do about this?

As we have seen, these questions often lead to answers that come up short. The Bible simply doesn’t offer us a catalog of reasons for suffering. Sometimes we will suffer for following God, but that is clearly not the only kind of suffering we see in Scripture. Sometimes the reason is hidden. Sometimes we don’t get a reason. So what are we to do? How do we face another day, another meltdown, another shattered dream?

We look to God.

I know, I know, that sounds trite. A “Jesus Juke”. Something the person who has never had a problem says. I get it. I am tempted to respond that way, but beyond the cliché there is something real. When I say “look to God”, I mean it. Look to God’s character. When we do this, something very important comes to light.

Throughout the Old Testament, God is patient with his people. Old School King James: “long-suffering”. Over and over again God’s people fail. Adam and Eve, Cain, Abraham (often the same failures repeatedly), Jacob, Moses, the entire book of Judges, Saul, David, Solomon . . . you get the picture. God never abandons his people. He never walks away. They provoke his anger, yet he is patient. When his people repent, he is always there for them. He may have seemed far away, silent, but he is always closer than they think. Perhaps the most dramatic picture is the book of Hosea – a man who is repeatedly betrayed by his wife, who suffers greatly because of it, but who sees restoration and healing. Hosea is a picture of God and his wife Gomer is Israel. God understands suffering and is in his very nature long-suffering. But this is not the end of the story.

 In Jesus we see something more. Not only does God suffer because of his people, in Jesus he suffers with his people. Paul, in Philippians 2:5-11 reminds us that Jesus was God who chose to become a slave, a human and to die a violent death on our behalf. God suffers with his creation. God suffers for his creation. 

When we ask “why?!”, we mostly want to know that this suffering matters, that someone cares. Jesus shows us that God does care, that he is paying attention even if we do not see it. This changes everything. When we realize that God suffers on behalf of his rebellious children, the very children who broke his beautiful creation, when we see that he has taken the job of repairing the breach on himself, we can be encouraged to face the next day, the next challenge, the next . . .

We do not always see or understand how or where God is at work. We know, we have seen, that he is trustworthy. Jesus reminds us that God sees even the sparrow fall and that we are worth far more than a sparrow (Matt. 10:29-31). 

“Why?” is an important question, a question that does not, I believe, offend God in the slightest. It is a question we ought to ask. But we can’t live there. In Jesus God shows us that we don’t have to. In Jesus God holds out his hand to us and says

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light. (Matt. 11:28-30)

Written by Kevin O’Brien

Kevin O’Brien is a husband, father, ordained minister, writer and volunteer theologian. He holds a Master of Divinity and Master of Theology from Liberty Baptist Theological Seminary where he won the Th.M. award in 1997. He has also done graduate work at the Institute for Christian Studies in Toronto.  Kevin worked as a brand manager on the Bible team at Tyndale House Publishers. During his time at Tyndale he has helped to develop several Bibles and has written articles which have appeared in The Way, the iShine Bible, and the Illustrated Study Bible. He also wrote a series of devotionals for WAYFM’s World’s Biggest Small Group.

Most recently, Kevin wrote an Advent devotional eBook. You can find it here. 

Kevin lives in the far western suburbs of Chicago with his wife, three children, a dog, and a cat. He would prefer to spend his time reading, writing, woodworking and watching the Chicago Blackhawks.

Seasons of Doubt

Hi Friends, it's April! I can't wait to see flowers start to bloom and trees start to bud after this winter season. Living in northern Indiana, we get to experience all four seasons very distinctly.

The theme in the Hope Anew Online Community this month is Questions, especially regarding God, Scriptures, and faith. This journey in disability and special needs has a way of making us question and rethink our worldview and priorities. Sometimes, whether we want to question them or not. We want to encourage you that if you are going through a time of unrest in your view of life and God, the Hope Anew Online Community is a safe place to voice those doubts, ask those questions, and work through that process. 

God is incredibly patient and understanding with us. He invites us to come to Him with our cares, fears, doubts, disappointments, misunderstandings, anger, and grief. He offers salvation because He knows we are a mess. He doesn't expect us to come to Him polished and perfect. He holds His arms wide in welcome, loving us as we are, and holds our hand as we take the next step in becoming more like Him. 

If you are currently in a time of questioning God, feeling abandoned and disillusioned by Him, keep asking, keep seeking, keep bringing those doubts, fears, anger, and grief to Him. Just as winter in Indiana can seem like it will never end, time and history show us that it will. Spring will come, flowers will bloom in their own right time if we wait for it.

If you keep pressing into God, asking questions, seeking HIM for who He is, He will meet your need for Him. His answer may not be what you were expecting or desiring, but it will be a good answer because that is His character. He is a good Father. He sees you and has promised never to abandon His children. 

All fees related to the community have been waived, so you can now join for free. I’m loving having a supportive, encouraging community of parents who “get it” and would love to have you join us!

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Embracing God’s Love for Special Needs Parents

This special needs parenting journey is challenging. Sometimes it feels like we’re drowning in appointments and anxiety, and other times it all seems manageable, but either way, something will happen to throw a monkey-wrench in everything. Something hard, as if we weren’t experiencing enough hard as it is. A rough day. Another diagnosis. A financial hardship. A sickness or hospitalization. Or our current situation of the spread of coronavirus and our social distancing and losing the village that we relied on--our churches, schools, children’s therapists and specialists, etc. It is easy in times like that to feel overwhelmed and to ask God a plethora of questions.

A few years ago, I was having an exceptionally hard day and I felt myself getting angry at God. “Why God? Why is everything so hard? Where are you? You’re supposed to be a good God and I don’t see you doing any good in this situation.”

I raged silently at a God who felt just as silent.

I knew I desperately needed some time to be alone with God, but my boys needed dinner and attention. And then, bedtime rolled around.

After my older son, about four or five years old at the time, was all snuggled in bed and we had read his book before bed, we prayed together. Sometimes I did the praying, sometimes we did prayers fill in the blank style as he could only say one or two-word phrases. I would say “thank you God for ____” and then he’d respond with something he was grateful for. Usually it was Mama or Dada or Baby (his little brother) or Birds (what he called his ipad because he loved to play Angry Birds on it) and so I decided to go with the fill-in-the-blank style prayer.

Me: “Thank you God for ____.”

“Eesus!” he said with a grin.

I choked back tears as I told him, “Yes, thank you God for Jesus.” I’ve never had any indication that he understood anything relating to God, Jesus or Bible stories, except for identifying “baby Eesus” at Christmas time. I’ve never prayed before using the words “Thank you God for Jesus.” It was his own spontaneous thought and it filled my heart with hope and joy.

We finished our prayers and I kissed that precious little guy goodnight and as I left his room it hit me: God had answered my angry prayers through the mouth of a child who would need years of speech therapy to be able to talk like his peers. I had demanded God tell me where He was and why it felt like He wasn’t caring for us. And He gently reminded me that He loved me and my children so much, He gave us Jesus.

“For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.” John 3:16 NIV

Oh, how amazing, how incredible is that?

The more I thought about God giving us Jesus, I realized that the Creator of our universe can relate to our special needs parenting journey in three unique ways that can encourage us:

God treasured His child, even before His child did a single thing.

“After his baptism, Jesus came up out of the water and the heavens were opened and he saw the Spirit of God descending like a dove and settling on him. And a voice from heaven said, This is my dearly loved Son, who brings me great joy.” (Matthew 3:16-17 NLT).

Jesus hadn’t yet done a single miracle or shared a parable and yet God was proud of Him. He called Jesus His beloved Son. He found great joy in Him.

And as parents, we do the same thing. We love them the moment we first meet them, and even though they need us to do everything for them, even though they cannot do a single thing for us in return, we love them. No matter how much care they need in their lifetime, we will still love and treasure and advocate for our child. They don’t have to do anything to earn our love, we just love them with all of our beings and are willing to do anything to help and protect our children.

God watched His child be rejected, struggle, and suffer.

God knows what it’s like to see your child suffer and struggle. He watched people not understand His son, watched them mock and test His son. He witnessed His child get beaten and whipped, carry a heavy wooden cross, and then have nails hammered through His wrists and ankles pinning Him to that cross. His son suffered for hours, and I’m sure God longed to take His son off of that cross, to hold Him tight in His arms, and take His son far away from the cross. Oh, yes thank you God for Jesus!

He knows how much we love our children, and the greatest thing of all is that He loves our children even more than we do.

He joins in our heartbreak when we watch our children experience pain or go through medical procedures. He grieves with us when we watch our children struggle to do things that come so effortlessly to other children. He understands our longing to change the circumstances for our children. He understands our pain when we see our children not be understood by others or mocked and excluded by others. 

God had a greater plan, and it was for our good.

But God had a plan. He knew there was a glorious purpose in His dearly beloved son’s struggles and suffering. I’m sure that didn’t make the pain and helplessness go away as His child hung on a cross. His love for His son was as fierce as ever, but His love for you and me and for our children and all of humanity was steadfast and unwavering. Yes, thank you God for Jesus!

Sometimes we have a plan for our children they cannot see. They cannot see the purpose in a medical test or a procedure or the therapies they go to, but we know the purpose for it. They don’t always see us advocating for them with schools and insurance companies and our churches, but we advocate because we have a plan and goals in mind to help our children be included and get the supports and services they need.

We may not see all the details of God’s plan and purpose on this side of eternity. We will see glimpses of it here and there, but it is in trusting that God has a plan that will help bring hope, purpose, and meaning to this special needs parenting journey.

“God showed how much he loved us by sending his one and only Son into the world so that we might have eternal life through him.” 1 John 4:9  NLT

Yes, my son was definitely onto something. Thank you God for Jesus!

May we be able to grasp God’s unstoppable, never-ending love for each of us this Holy Week and always. 

Bio: Jenn Soehnlin is a middle school English teacher and mother to two boys who are precious blessings and who both have special needs. She is the author of Embracing This Special Life: Learning to Flourish as a Mother of a Child with Special Needs.

Jenn enjoys blogging about faith, praying Scripture, and special needs parenting at www.embracing.life. You can join her Facebook group for special needs mothers Embracing This Special Life for online support, community, and encouragement. 

4 Steps for Navigating Fear

In last week’s article, I shared how fear serves an important role and acts like the warning light on the dash of our car.  How did last week go? Did you recognize this warning light going off in yourself, your spouse, or child?

If your answer is yes, then you may be wondering what to do. Here are four steps to help you navigate your fear and for you to help your family members navigate their fears:

1.     Pray & remind yourself of who God is:

Take a deep, slow breath or 20 and share your fears with your heavenly father. Ask Him for His peace and wisdom. Remind yourself of those truths in God’s word about who He is and His character. For example, He is sovereign and all knowing.

2.     Develop & implement a plan:

For example:

1. Determine steps needed to protect your family from getting sick, such as limit social interaction, wash hands, etc.

2. Establish a new routine – after being somewhere, get in car and use hand sanitizer on hands, inside door handle, phone and wallet before touching the steering wheel

3. Check into alternative options to meet medical needs, if the need arises

4. Think of alternative solutions for social engagement

5. …..

This will not be a one and done plan. As you implement it, you will need to revise it to better meet your family’s needs. There will be items on the list that you won’t have immediate solutions for but part of your plan may be steps to find those solutions.

3.     Find a community:

Fear becomes more paralyzing when we go through it alone. Find a community that gets it but be aware of the culture of that community.  You become like the people you spend the most time with. If the community is negative and not hope-filled, that will feed your fear and not reset it.

As a side note, if this is a need that you see in your life, I would like to invite you to join the Hope Anew Online Community. This is a great time to join as we have waived the membership fee. You can learn more at HopeAnew.com

4.     Look for ways to bless others:

When we look for ways to be “Jesus with skin on” to others, it can take our focus off ourselves and we can receive joy as we encourage others.

During this time you may need to be creative but it can become a fun family project.

As you are figuring out how to navigate this new season, remember that God is with you. He loves you and your family. He will never leave you and never forsake you.

Written by Jonathan McGuire

Jonathan McGuire  is  the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.

Hope Anew has launched the Hope Anew Online Community and would love to have you be a part of it! You can learn more at www.HopeAnew.com.  Due to COVID-19, Hope Anew is waiving all membership fees for the community!

Written by Jonathan McGuire

5 Simple Activities To Talk About Big Feelings

Covid-19 has stirred up some big feelings. What is happening in our own communities and around the world is so very unexpected and unusual it is difficult to work through the emotions that have come along with all this change. Talking about feelings, naming them and acknowledging them together can be incredibly helpful at times like this. But where can we begin?

Knowing where something hurts, or what emotion is being felt doesn’t come instinctively to some members of my family and I find myself reaching for creative ways to get the conversation going to help me to support my children through this time where I’m sure they’re wrestling with huge emotions – fear, disappointments, worry, uncertainty in all the changes, helplessness, out of control. Talking together gives a chance to bring myself alongside and support more closely, and for us helps us to pray more specifically having talked about how we’re doing.

Here are 5 simple activities to help us talk about big feelings:

1. Out of control get a large piece of card or paper and draw a big circle in the middle. Using old magazines to tear out words and pictures, and pens to draw and write fill the circle with things you can control and outside the circle with things out of our control. Picking one of the things in our control that we could act on can even bring some relief to the big feelings.

2. Body mapping – make gingerbread cookies talking about what each part of your child’s body might be feeling like right now. While they’re cooking maybe draw round the cookie cutter and mark the parts of the body that feel different (like butterfly tummy, or aching head) and be detectives together to work out what emotion might be making our body feel that way.

3. Playdough faces – use Playdough to make faces with different expressions. Make one for how you are feeling today.

4. Color– Get out some paint and paint those feelings – what kind of character are they, what do they look like, what color are they?

5. ·Charades– play emotion charades, taking turns to act out and guess emotions. Have a good laugh together and then chat about which one each of us have felt recently.

I hope these ideas are as useful to you as they have been to us. These are unsettling times for us and our children and anything that can help me to stay closely alongside, ready to help and support seems to be a worthwhile thing – I guess chatting with them about their big feelings is inside my circle of control!

Written by Cathy Porter

Cathy Porter is  a disciple of Jesus, a mum, ordained and a vicar's wife (in the Church of England), a writer, a creative, a blogger.

Cathy and her husband, Andrew, have 3 children. Her two girls both a diagnosis of ASC. You can follow the ups and downs of family life & faith on her blog: www.clearlynurturing.wordpress.com.

It is Cathy’s heart to encourage families to share in the adventure of faith together, especially families beautifully shaped by ASC. She loves to write stories that make the reader think, ask questions about what we believe, and help the reader to discover what the Bible has to say about God and friendship with him.