Beyond Labels: Seeing the Beauty in EVERY Child

Do you ever feel like your child is looked down on because of their disability or special need?

In the world, you often see a differentiation between the “haves” and the “have nots.” Those in sports are esteemed more highly than the shelf stocker at Walmart. The advice of those with the largest following on social media or YouTube is more sought after than the grandfather or grandmother up the street.

Sadly, this can even be true at churches. I hear of many parents on this journey in special needs walking through the church doors looking for community and eventually walking away because they are made to feel like their child is a burden. Congregation members treated their child as less than and not really valued.

If this is your story, I’m sorry. This Easter season, I want to assure you that God does not see your son or daughter as less than.

Here are 5 ways that we can see this in the Bible. 

1. Your child is created in God's image

"So God created mankind in his own image, in the image of God he created them; male and female he created them." - Genesis 1:27 (NIV)

This verse reminds us that every person, including those with special needs, is created in God's image and is therefore uniquely valuable and important in God's eyes.

 

2. God sees beyond physical limitations

“But the Lord said to Samuel, ‘Do not consider his appearance or his height, for I have rejected him. The Lord does not look at the things people look at. People look at the outward appearance, but the Lord looks at the heart.’”

– 1 Samuel 16:7 (NIV

While human beings often focus on physical appearances and abilities, God looks at the heart. He sees beyond a person's disabilities to their true character and potential.

3. God sees my child's struggles and cares for them

"The LORD is close to the brokenhearted and saves those who are crushed in spirit." - Psalm 34:18 (NIV)

As a parent, it can be heartbreaking to see my child struggle with challenges or disabilities. But I take comfort in knowing that God sees their struggles and cares for them deeply. God is close to those who are brokenhearted, and I believe that He is with my child every step of the way.

4. We are all equal in Christ

“There is neither Jew nor Gentile, neither slave nor free, nor is there male and female, for you are all one in Christ Jesus.” – Galatians 3:28 (NIV)

In this passage we can see that in Christ, there is no distinction between people based on their race, gender, or social status. This includes people with disabilities, who are equal members of the body of Christ. God values each person equally and desires for us to love and accept one another just as Christ has loved and accepted us (John 13:34-35).

5. God has given your child a unique gift or talent to share with the world

"Each of you should use whatever gift you have received to serve others, as faithful stewards of God's grace in its various forms." - 1 Peter 4:10 (NIV)

This verse reminds us that every person, including those with special needs, has unique gifts and talents that can be used to make a positive impact on the world. By valuing and nurturing these gifts, we can help our children to realize their full potential and make a positive difference in the world around them.

This Easter season, as we celebrate the death and resurrection of our savior, I want to encourage you that not only does our heavenly father know and love you. In the same way, He fully loves your son or daughter. He does not view them as a burden or less than.

He tends his flock like a shepherd:
    He gathers the lambs in his arms
and carries them close to his heart;
    he gently leads those that have young.

~ Isaiah 40:11 (NIV)

Written by Jonathan McGuire

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Jonathan McGuire  is the dad of two boys and co-founder of Hope Anew, a nonprofit that guides the beat up, battered, and worn out parents of children impacted by disabilities and special needs through the spiritual and emotional challenges they face to Christ-centered hope and healing.

Organizational Strategies Are Saving My Life Right Now

Organizational strategies are saving my life right now, and my 94-year-old mother is the reason.

Our family is in a season similar to the early 1980s when my husband and I were parenting a medically fragile baby. Back then one medical crisis after another meant dropping everything, buckling our son into his car seat, and racing to the doctor’s office or hospital. Nowadays, calls from Mom’s long term care facility require snap decisions regarding her medical care or unexpected trips to her bedside.

Thankfully, I cut my organizational teeth as my son cut his baby ones. The process was drawn out and painful for both of us. Still, I’m grateful for lessons learned in those years because they taught me that organization can ease the stress of caregiving. Several organizational strategies are saving my life right now, and today I’m sharing seven of them.

#1: The Lazy Genius.

Kendra Adachi is host of the The Lazy Genius Podcast and author of two amazing organizational books, The Lazy Genius Way and The Lazy Genius Kitchen. She approaches organization as principles to apply in your circumstances rather than as tips that worked in her life. Her method helps me “lazy genius” how to deal with my caregiving situation, and it can do the same for you.

#2 Sticky Notes.

3-M introduced Post-It® Notes in 1980. I wrote notes to the substitute teachers who took over my classroom on a moment’s notice. Now I use them to write notes to myself about what I was doing before being called away. They are also handy for instructing my husband, daughter, son-in-law, and grandkids what to eat or not eat in the fridge or freezer. Those stickies are assurance that there will be food when I arrive home exhausted.

#3 Freezer Meals.

Yep, another food strategy. Because nothing stresses me more than having to think of what to feed my family when I’m emotionally spent. And nothing eases my stress like pulling out a freezer meal and leaving a sticky note with supper instructions (see #2) before dashing out the door to go to Mom. When I menu plan for the upcoming week, I make sure 1 meal is a recipe I can double, triple, or quadruple. 1 batch is for supper, and the rest are packaged and put in the freezer.

#4: iPhone’s Reminder App.

My daughter created several shared grocery lists using this handy iPhone App. Yes. Another food strategy. This time it’s because not having all the ingredients when ready to make a quadruple batch of something is also very stressful. And with 3 adults in the house who share cooking and shopping duties at several grocery stores, the shared lists let us communicate without convening a family meeting each week. Which I likely would miss when called away because of Mom’s latest health crisis.

#5 Electronic Library List.

This electronic list is available to card-carrying patrons of our local library. After I search for a book, DVD, or other item at the library website, I can click a button and add them to my list. When I go to the library, I pull up the list on my phone, find the item on the shelf, and delete it from the list. Your library probably has a similar system. For our family, which is deeply invested in reading, this list is better than sticky notes.

#6: Paper Calendars.

Wall calendars work for me in ways that electronic calendars don’t. It’s always in the same place in my kitchen. I menu plan and write big events on mine with Sharpie marker so a month’s worth of meals (More food. What can I say?) and events are visible at a glance. I also prefer a paper planner over an electronic one because flipping pages is easier than swiping screens.

#7: Pill Organizers.

Whether they hold vitamin and mineral supplements, pills prescribed by a doctor or over the counter medications, these organizers cut down on the “Did I take my pills?” or “Did I give my kids theirs?” confusion. I filled mine every weekend until a Facebook friend posted a picture of the 4 pill organizers she filled once a month. I was an instant convert. Not only does this practice save time, I can see what’s running low and order more right away. This decreases the likelihood of running out when Mom’s next health crisis hits.

These organizational strategies are saving my life right now. Bottom line––being organized allows me to better focus on Mom’s needs when they arise. However as you and I know much of a caregiver’s life, or the life of the loved ones we care for, can’t be organized or controlled. In those situations, God calls us to rest in His control over all things. When we do, He will reveal His sovereignty and provision in ways that lead us to deeper faith, greater worship, and confidence in Him.

Written by Jolene Philo

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon. See Jane Run!, the first book in the West River cozy mystery series was released in June of 2022.

REST

I had big plans for the vibe my family would have.  I love classical music and jam band music and Bob Marley.  I love cozy blankets and crackling fires.  I love the beautiful smells and sounds and sites of nature.  I love all things calm and soothing and soft and comforting and chill.  I think it’s always been my way to cope with my own anxiety, and I always pictured the perfect workplace for me would be a spa. I had every intention of carrying that vibe over into how I parented and the lifestyle our family would thrive in.  

Oh boy.  It has been far from the reality of how things have been going.  In muddling through the parenting of young children and the task of figuring out the special needs we have in our home, it has been anything but chill.  It has been beautiful and full of love and happiness, but it has also been frantic, electrified, a tad loud and flat out buzzing in our home.   I laugh as I type this, because we can plan and envision our future all we like.  We just aren’t in charge of the twists and turns our life will take.  My sharing this is in no way a complaint.  I have none, aside from the fact that I’d love a little more sleep.  Just a little.  It's a fact.  Our vibe is the opposite of the therapeutic calm I maintained in my home as a single woman.

I recently read an article about the effects of hyper-focusing on our children.  I think the piece was probably written with a typical child-rearing experience in mind, but it stung a little reading it.  It made me ask myself a couple of questions.  Am I too hyper-focused on the needs in our home, and missing the calm and chill we all would benefit from?  Am I able to turn this buzz off by creating that vibe I so desire here, that I had always intended before things got so hard? Can I just rest even within the frantic?  Those thoughts all flew through my mind as I read this article.  

Then the thought that pops into my mind so often, did just that.  It popped in.  “But, we’re different”.  I have to constantly assess needs and if I’m not focused in, I might miss it.  One of the systems we have in place, may fail if not surveilled each moment.  And we are different, but hasn’t it been my mission to convince the World that all people are different, and in that way we are the same?  We are not so different, that this message should not apply to us as well.  We are loving parents. Ensuring that every need is met is important, but the focus of our entire family life does not have to be based on our children.  While meeting the special needs we’ve encountered, it feels time to rest in terms of the hyper-focus I’ve felt to this point. 

It occurred to me that I had gotten very swept up in figuring it out and in the research and in the moments that I felt helpless in. It clicked that my children will benefit from the calm I’ve always clung to as a coping mechanism for myself.  It’s almost as if, in the flurry of the last few years, I’d forgotten how to procure an environment of rest.  

After mulling over this, I started claiming some peace and calm at home for myself, but for my children, as well.  We can parent our special needs family members well without putting all of our focus on parenting.  In removing the unseen microscope from the members of our family, each one can exhale.  And if we need anything, after the whirlwind of navigating PANS/PANDAS in our case, we all need rest.  We need rest during all of the storms of life. 

We are still well within the storm on many days, but I can relax.  My kids can, too.

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.

There Can Be Respite in the Sleepless Storm

It’s fitting that my son’s preferred sound to sleep with is a booming thunderstorm.  Let’s just say, college all nighters don’t even hold a candle to the all nighters my handsome little guy and I have endured together.  His sleep, among other things, was greatly impacted by the effects of his autoimmune condition called PANS/PANDAS.  Before his diagnosis and before we had a treatment plan, my forty-something year old body really struggled to keep it together during a season of difficult bedtimes, frequent nighttime wake-ups and a boy that started each day long before the rooster crows. 

I spent hours singing hymns and James Taylor songs and I’ve Been Workin’ on the Railroad on repeat, to name just a very few, sitting crossed legged in this sweet child’s darkened bedroom willing him to fall asleep.  For a long while, my husband singing Kumbaya in a slow, droning voice over and over and over again, was the only way to peace.  In a room adorned with the darkest black-out curtains they sell and the most realistic and loud sound machine on the market, I would pray for my child's body to calm long enough for him to find rest.  And once the calm came, I’d steal away for a few winks, knowing that I’d soon be back snuggled with this little love of my life, trying to calm him back to sleep once more.

Looking back on those days, having made huge strides in the sleep department, I realize how little concern I took in my own well-being. 

Isn’t that what a mom does? 

We do what we have to, and when it comes to our children, we take on the task at hand no matter what that task asks of us. Those wake-ups that sometimes came as early at 3:45am, were followed by full and glorious and nerve-wracking days.  Days full of coffee and giggles, meltdowns and play dough, hope and worry, and the endless shuttling back and forth to preschool, gymnastics, speech, OT, or whatever that day held.  Then, those days would circle back to Kumbaya once more.

As my son has gotten older, some of those struggles, both day and night, have worked themselves out. Some we have found our way through, some are still a daily struggle, while others are brand spanking new.  I have, though, started to make a point to acknowledge the amount of stress I’ve been functioning under over the past 7 years.  I’ve begun work to heal the parts of me that this has all piled up on.  It is my nature to smile through anything I face. I often proclaim that all is well, or give a good old, “We’re hanging in there!” with a grin and a giggle.  I think in many ways that has helped me to endure the heartache of it all.  It has helped me to conceal the gallons of tears I’ve shed over watching my child navigate such difficulties, though concealing them is entirely unintentional.  What those smiles haven’t helped is in finding any relief from the stress I’ve been under.  

Self-care was a term that kind of bothered me, as if it was this luxury others were afforded, or even an indulgence.

Who has time for that? How could I even squeeze that in?  I’ve learned now that we all have time to care about ourselves and I can squeeze it in.  It is not indulgent to care for the mother of my children.  It is vital.  It can be as small a start as just taking a multivitamin. It can be scheduling an appointment to walk around a park for an hour all by yourself.  It can be reminding yourself of the interests you had before things changed in your life.  I have found that visiting with the old me, for a moment or two each day has done wonders for my stress level.  I wish I had made a point of it sooner, when I felt buried in worry.  It’s okay, though, because it’s never too late to pause and re-evaluate the state of our experience.  We can find peace even during these hard moments in life, even during the loudest booming thunderstorm.

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.

Stages In The Parenting Journey Part 3

That last two weeks I have shared about how our current situation with selling our house due to health reasons and going on an epic family adventure bears similarity to many of our journeys as parents of children impacted by special needs. If you missed those, you can catch last week’s article here.

Stage 3 – Movement: First Unsteady Steps Forward

We were able to keep many kitchen tools and most clothing that was a single layer. Nothing upholstered or thick, no couch, comfy chairs, shoes, coats, papers, books, pictures, nothing made of particle board, etc. Anything that we were able to keep had to have every single surface thoroughly washed and wiped down with the mold cleaning solution before packing it. Our hands had to touch and sort every single item. Many dear, treasured, and sentimental things were simply thrown into a garbage bag or trailer for the dump…my wedding dress, photos of the boys’ baby pictures, our engagement night pictures by the pond out front that would soon no longer be ours, art the boys had drawn for me, Christmas stockings made by grandmothers and great aunts who are no longer alive, the china cabinet we bought on our honeymoon.

The items seemed endless and the process took months. Items we had saved money for months or years to be able to buy and finally were able to add them to our house to make it a comfortable, welcoming home became trash. Some items we sold in a moving sale (before the pandemic) for pennies of what they were worth. Two decades of building a home all gone and no insurance money to replace things. It was all consuming, that’s nearly all I did those 3+ months. Every. Day. Sort, trash, wash, cry, repeat. Just surviving through hurt, grief, and managing the day-to-day task of getting through the crisis.

With special needs, you get to the point that either your time limit has expired, and action must be taken immediately, or your research has progressed enough to make a first decision. In an emergency situation, your research may be listening to and solely relying on the information from a single doctor. Or, you may have time to dig deeper, consult with specialists, talk to friends who have been through it, and evaluate your options. But at some point, you have to make a decision and embark on the first interventions – a surgery, special school, therapies, special diet, or some other program. This may last for a week or it may last a year or more. It may work and you can keep moving forward to the next step or it may not, and you have to do more research and try plan B. Your stomach is likely tied in knots and your thoughts filled with hope and fears as you embark on this first step.

Your new reality starts to settle in as to what this new life will look like – the agony of surgery and recovery, follow up surgeries, speech therapy, trach tube, ABA therapy, doctor appointments galore, paperwork, adjusting your life and schedule around the needs of your child with additional needs, and changing it again at the last minute.

All future plans are written in pencil. It all feels foreign, unknown, and overwhelming. 

At this point in Stages 1-3 in the journey, it’s not uncommon to start asking some soul questions like, “Why? Why me? Why us? Why my child? God, why would you do this? Allow this? Why didn’t you protect us from this? God, I thought I was a good person, serving you, doing life the best I could for you, why did you punish me, my child?”

If you find yourself or your spouse asking these questions, it doesn’t mean that you are a bad person or a bad Christian. It is part of the grieving process. It is part of the healing process.

To be continued…

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!

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!

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. 

Just Get Over It

Do you know what words have never helped anyone get over their hurt, their pain and their grief? This phrase right here…“Just get over it.” Yet this is a phrase I have repeatedly heard others say to parents who are grieving the loss of a dream of a typical childhood and the challenges their child will face growing up.

Wouldn’t it be nice if in the midst of your grief, you could flip a switch and say, “I’m over it.” I will never grieve this again.  Life is good and I have completely healed.

However, that is not the case for many parents who have a child impacted by special needs. Sure, there will be periods where the grief subsides and the parent is able to dream a new dream and appreciate the incredible person that their child is but then there will be other moments when grief rears its head again and floors us. The grief is chronic.

Just get over it? How do I just get over it?

My son cut his leg this week while on a bike ride. What if I told him to just get over it and go on with his day? There would have been stones, dirt and grease from the bike chain left in the cut. What would have happened next? If left the way it was, the cut would have attracted flies and eventually become infected.

The reality is if I choose to just get over it, I am choosing to ignore it and just bury the pain. If I bury the pain, it will become “infected” and it will come back. It will come back as anger, resentment, health issues, sin issues and the list goes on.

When my son cut his leg, instead of telling him to “just get over it”, I listened to him. I let him share from his perspective what happened and then he washed off his leg.

Some of you may find yourself at this point of grieving. If you do, be assured that it does not mean that you love your child any less.

Healing takes time and we all heal at different rates. That is why a husband and wife can experience the same event but be in different places emotionally.

If you find yourself in this place of grief, I would encourage you to take a look at the Psalms and laments. It may even  be helpful for you to write your own lament. If you find yourself stuck in this place of grieving, it may be time to meet with a counselor so you can get that listening ear.

But whatever you do….don’t “just get over it” because you won’t.

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!

Romance, A Divine Design

As I shared last week, I’m a complete romantic. To my core. I love romantic books and movies. December rolls around and I get excited about the sappy movies that will soon be on television. Jonathan teases me saying, “Let me tell you what happens. Boy meets girl. Boy has an ugly sweater. Girl has a problem. It gets solved. They fall in love. The end.”  I grin and say, “Yup, isn’t it great! You want to watch with me?” That usually earns me a kind-hearted eye-roll. Yes, the story line is basically the same in all of them, but I don’t tire of it. I love all things about falling in love

When I find myself longing for something that seems impossible to attain or to attain fully, I find that it often points to a desire placed in me by God that will be fulfilled in eternity. I think romance is one of those longings.

The thing I love about romance is that it involves being known, chosen, desired, completely loved and adored for who you uniquely are. There is no disapproval or disappointment, only delight, delight in each other over all others.

 Throughout Scripture, there are several pictures of God’s relationship with us such as potter/clay, shepherd/sheep, father/child, as well as bridegroom and bride (that translates as “fiancé”). He has proposed. And when He returns for us, to bring us to the home He has been preparing, there will be a wedding celebration feast!

Hosea 2:16, 19-20 says, “When that day comes,” says the LORD, “you will call me ‘my husband’.” “I will make you my wife forever, showing you…unfailing love and compassion. I will be faithful to you and make you mine.”

 This story doesn’t just follow the typical plot line, it created the typical plot line. Boy loves girl. Girl has a problem (sin). Boy rescues girl (gives His life, pays the price owed by girl to get her out of her problem – I John 4:10). They fall in love. There’s a wedding!

Are you questioning the falling in love part? Does it feel like a long-distance relationship before the telephone? When the doctor handed you the diagnosis, your child is in surgery – again, you haven’t had a full night of sleep in years due to the breathing machine, your child has no friends and your heart breaks with their pain, when your spouse says, “I didn’t sign up for this” and leaves. It can all feel like God doesn’t care for you at all, let alone that He cares with unfailing love.

If that is where you are at, take time to contemplate that He defines love. He IS love (I John 4:8). He has chosen you and He takes “great delight in you” (Zeph. 3:17). He knows the number of hairs on your head (Matt. 10:30) and collects your tears in a bottle (Ps. 56:8) and promises to one day wipe every tear from your eye and to get rid of death, sorrow and pain forever (Rev. 21:4). How romantic is that!

 

I find that too often I walk through life consumed with my tasks and problems, totally unaware of the things my Fiancé has put all around me to show His love for me and that He’s thinking of me. If His love feels distant, ask Him to show it to you and then keep your eyes open for little things He puts in your path to say, “I love you. You are precious to me. Enjoy this, my darling”. Tonight, maybe look up in the sky and remember that your Fiancé actually did hang the moon for you.

Written by Sarah McGuire, Co-Founder of Hope Anew

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that comes alongside the parents of children with additional needs on spiritual and emotional level.

"Unexpected Blessings" In Review

Sandra People’s book, Unexpected Blessings, is a wonderful and insightful resource and guide for anyone touched by special needs. Whether you have a child with special needs, are an extended family member, or a friend. This book gives an inside look at the spiritual and emotional journey parents of a child with special needs will likely travel.

The title is Unexpected Blessings, but Sandra acknowledges and directly addresses the very real and very hard things about the journey. She ties it all back to Scripture and brings out passages and stories that show how the Bible and Biblical characters are relevant to our daily lives and our journey in disability or special needs. She provides answers to the questions and struggles parents of kids with special needs face and points to the hope and answers that are desperately needed.

“Jesus doesn’t condemn us for feeling a full range of emotions, and we shouldn’t condemn each other. It’s okay to not be okay. There is grace to meet you there.” 

- Sandra Peoples

 Sandra hits on the main topics relevant to the parent’s side of the special needs journey, including: diagnosis, heartbreak, grief, struggle with God and false belief systems, guilt, shame, fear, rest, restoration, daily how-to’s to simplify life, finding a new purpose and path forward, God’s purpose for disability, how to navigate relationships within the immediate family as well as extended family and friends, and the need to build new relationships.  

As the parent of a son with autism and a sibling of a sister with Down’s Syndrome, Sandra writes from multiple perspectives on the issues. I appreciate Sandra’s down-to-earth communication style, authenticity and transparency with the journey she and her husband have traveled.

Yet, Sandra doesn’t stop with the challenges that come with special needs. She has found that both on the other side of the struggles and within the challenges, there are great blessings, unexpected blessings. She not only has found them, she lays out the path so other parents can find them too. 

While the challenges may always be part of life with a child with special needs, those unexpected blessings bring joy to the journey and purpose in the pain. Unexpected Blessings is a wonderful guide that lets parents know it’s okay to struggle, God loves them and is for them, and there are great blessings waiting for them along the way.

“Our suffering has a purpose. It is not accidental or circumstantial. His loving, powerful hand guides us through even the hardest times. It’s on this detour you come to realize the true depth and breadth of God’s love.”  - Sandra Peoples

Written by Sarah McGuire, Co-Founder of Hope Anew

TANTRUM VS MELTDOWN

“If that child were mine it wouldn’t be acting that way right now.” How many of you have heard this or a version of this while your child was in meltdown? It may have been at the grocery store. It may have been at a family reunion or any number of other places.

The problem is that many people don’t understand the difference between a meltdown and a tantrum. As a kid, I remember seeing an example of a tantrum on the old Andy Griffith TV show. Opie wanted to receive his allowance without doing any work and his friend gave him clear instructions on how to throw a tantrum to get his own way. Opie started by holding his breath. This escalated to crying like a baby, which progressed to stomping his feet and finalized with him lying on the floor kicking and yelling. Every parent has seen a version of this in their own home and most kids don’t need a friend to teach them how to do it. They figure it out on their own.

Tantrums are clearly a discipline issue. They are an act of will. The child is trying to manipulate the situation to get his or her own way. This is what the average person thinks is going on when they see a child having a meltdown.

So what is the difference?

A tantrum is typically a tool in the child’s toolbox to get their own way. The child is typically in control when the tantrum starts and knows what they are doing. Tantrums are a behavioral issue and the child needs discipline to learn that behavior isn’t appropriate.

On the other hand, a meltdown is typically a response beyond the control of the child. It is often a response to an environment or a situation. It may be as simple as their milk being spilt on the kitchen table. They might be in complete sensory overload at the mall or they may just be overwhelmed and exhausted. In the case of a meltdown, disciplining the child won’t resolve it and will likely make it worse.

In all honesty, sometimes even as the parent I have a difficult time telling the difference. I can be so close to the situation that I don’t see it. There have been times when I have had to ask Sarah if she thought a certain reaction our son was having was due to his struggles or if it was in fact a behavioral issue. There have also been times when what started out as a behavioral issue had transitioned to a meltdown so I learned to first help him get through the meltdown and then later circle back to the behavioral issue.

I want to close by saying, “Hang in there Mom and Dad.” There is a lot of judging each other in the world around us. You may catch the whisper of the occasional snide remark, causing you to second guess yourself and your ability to parent this wonderful child of yours. The reality is the person that was judging you 30 seconds ago has probably forgotten the experience and is currently judging someone else. Don’t let their negativity breed negativity in you. You’ve got this.

GOD, WHERE ARE YOU?

Have you ever felt alone?  There is a peaceful type of feeling alone.  It is sort of like sitting on the bank of a mountain side stream just listening to it gently gurgle on by with the birds singing in the trees around you and you are quietly being refreshed.  That is not what I am talking about.  The type I am talking about is where you are sitting in the ocean with no land in sight.  You are in an old wooden row boat with no oars and a 40 foot high wave is about to sweep over you.  There is an utter hopelessness and despair.

Does that sound familiar? 

I was recently struck by the story of Gideon, one of the judges of Israel.  When we find Gideon in Judges 6, he was threshing grain in the bottom of a wine press.  This was not the typical way to thresh grain. It was more common to thresh it from the top of hill so the wind could blow away the chaff.  However, Gideon did not want to be spotted by the Midianites who had been persecuting Israel for seven years.  The Midianites had been so cruel that the Israelites had taken to hiding in the mountains, caves and other strongholds.

While Gideon was threshing the grain, an angel of the Lord sat down beside a tree where he was working and said, “Mighty hero, the Lord is with you!”  Let me be clear, at this point Gideon was not a might hero.  In his own words, he was the weakest in the whole tribe of Manasseh and the least of his entire family. Gideon replied to the angel, “Sir, if the Lord is with us? Why has all this happened to us? And where are all the miracles our ancestors told us about?  Didn’t they say, ‘The Lord brought us up out of Egypt’? But now the Lord has abandoned us and handed us over to the Midianites.” The angel of the Lord then told Gideon that he was to rescue Israel from the Midianites. God went on to use Gideon to free Israel from the persecution of the Midianites.

Does any of this resonate with you like it did me?  Have you ever wondered why all this is happening to your child?  Or maybe you have seen God bring healing to the children of other families and wonder why He hasn’t done a miracle for your family.  You hear other believers talk about a closeness with God, meanwhile you feel abandoned and betrayed by Him. Then you struggle with guilt related to that.  I want you to be encouraged.  Just as God saw Israel during these seven years of suffering, God knows your pain, hears you and has not abandoned you.

Maybe you feel ill equipped for this journey and are just trying to get from one moment to the next.  I want to leave you with the words the angel of the Lord gave Gideon, “Mighty hero, the Lord is with you!” You are indeed a hero to your child and to your family.  God is with you, even when it doesn’t feel like it, even when that ocean wave is crashing over you and there’s no help in sight, and He is using you in ways greater than you will ever know.

Do you want to learn more about Gideon and how God used him to free Israel from the persecution of the Midianites?  You can check it out for yourself in Judges 6. We would love to know what you think!

CHANGE PART 1

Change… What thoughts and feelings go through your mind when you hear this word?  For some, there is a great excitement and anticipation.  For many of you there is a deep weight that comes over you and a gnawing in the pit of your stomach as anxiety comes over you when you think about all the implications of that one word. 

Many of you who now struggle with change, may have at one point been huge change advocates but the unique needs of our children may have rightly left you a bit paralyzed by the word change.

This came to the fore front for us when on vacation this winter. My wife usually cuts the boys’ and my hair but during the rush of the holidays, she didn’t have a chance to cut our hair before leaving.  She also separated her shoulder so we knew she wouldn’t be able to cut our hair when we got home.  This meant finding a barber in a new area.  I looked up reviews of local barbers and found someone who would be close and had good reviews. 

The morning came to go get haircuts.  I knew that my youngest son was very particular about how his hair was cut and would never let Sarah do anything different.  Somehow, it didn’t occur to me how difficult it would be for him to have someone else cut his hair.  When we shared the plan with him that morning, he was on the verge of tears.  We were able to eventually talk him through it and I was able to get the exact measurements that we cut his hair at home.  With those reassurances, we were off to get his hair cut.  Upon arriving, his older brother went first so he would know what to expect and have assurance that the person did a good job. He watched and when it was his turn, he got right in the chair without a problem.  Now, he barely said a peep when the woman talked with him, but he did it!

Change can be hard for our little ones and strike fear in the core of our hearts but some change can also be good and even necessary.  There was no way Sarah could cut our hair and she needs to take a break for her arm to heal.  This was a necessary solution to help take one of the many things off her plate that she is trying to balance.  While it was a challenge for our son, it was also good for him.  It was not so far outside his comfort zone that it would scar him if done correctly.  Instead, it stretched him and was an area of growth.

How can we prepare our children for change when we know it is coming? Here are several steps you can take to help take some of the anxiety out of it:

• Before talking with your child about the upcoming change, come up with a plan.  Try to anticipate what fears and concerns your child may have. Is there a physical item that might help them with the change such as a weighted blanket or noise canceling headphones?
• Explain the situation and why it is necessary
• Listen to their fears and concerns without minimizing them
• Outline the plan and address their fears and concerns
• Allow time to process and adjust to the change
• Move forward and encourage frequently along the way. 

Despite our fears, change can be a good thing and even necessary.  What are some things that you do to help equip your child for an upcoming change?

Many changes are unexpected and we don’t have the luxury to always prepare our children for them the way we want to.  Next time we will look at coping with those unexpected changes. You can find that article here.

Breathe

Christmas and New Years have come and gone.  All the gifts have been unwrapped, the parties are a memory and the last of the fruit cake has been eaten.  Your therapists have come back from vacations and school has resumed. Give me a high five, you made it! While there were many wonderful moments that I am sure you never want to forget.  I know it wasn’t without its challenges.

Now you can resume those precious routines until the next big thing.

But before you dive in, take a moment to just breathe.  I mean it.  Take a moment right now to close your eyes, let the tension melt out of your shoulders, relax your muscles and follow the following 4 steps. 

1.    Take a deep, slow breath from your belly, and silently count to 4 as you breathe in.

2.    Hold your breath, and silently count from 1 to 7.

3.    Breathe out completely as you silently count from 1 to 8. Try to get all the air out of your lungs by the time you count to 8.

4.    Repeat 3 to 7 times.

It is easy to always focus on what needs to happen next and always be in go mode.  The stress compounding the way we wish our bank accounts would, affecting our physical, emotional, and spiritual health.  Taking a toll on the relationships we have and leaving us depleted and unable to take one more step. 

So as you feel that stress mounting, and you are getting ready to dive into the next thing just take a moment and remember to breathe.

Signs You May Be Dealing With Trauma

Being traumatized is our reaction to an event or series of events.  People will react to the same experiences differently.  I had the opportunity to debrief an individual after she arrived back in the United States from traveling overseas.  During her travels, she and two other individuals went to a coffee shop.  A truck crashed through where they were sitting and gunshots erupted.  She ran to safety with the others.  In checking to make sure they were each okay, one individual found a bullet hole in his pant leg!  While we were debriefing, it was clear that the woman was struggling greatly from the emotional trauma.  In fact, through conversations it was evident that she was more deeply impacted than the individual who had the bullet go through his pant leg.  This does not mean she was weaker than him or processing the event wrong.  We just all respond to situations differently depending on timing and other things going on in our lives.

Each day, parents of children impacted by special needs experience so much just through the course of taking care of their children.  Yes, there is a lot of good but there is a lot that is really, really hard.  We are there with our children as they struggle.  We are with them through the countless doctor appointments and possible surgeries.  We are with them through the sleepless nights and are agonizing about what to do next.  It tears us a part to see them hurting and not know what to do.  As my wife Sarah tells people, it wasn’t that she was just trying to get through the day.  She was trying to get through that minute.  Is it any wonder that we as parents can experience trauma or secondary trauma?

How about you?  How are you coping?  Mobile Member Care works specifically with missionaries overseas and has put together the following chart for reactions to trauma in adults.  You can see the original here.  As you read the chart, mark those reactions that apply to you. 

How many of the above reactions sound familiar to you? One, five, ten…more? 

If you find yourself struggling, remember…it doesn’t mean you are weak or lacking faith.  It doesn’t mean you are a bad parent. It is okay to struggle.  When we accept our weakness, it opens the door for God's strength to work through us in ways we never imagined.   

2 Corinthians 12: 9 "My grace is sufficient for you, for my power is made perfect in weakness."