My 4 Tips for Surviving a Special Needs Train Wreck

My 4 tips for surviving a special needs train wreck became part of my life decades ago. Our son, who’d had major corrective surgery at birth, was thriving.

Or so we thought.

Then he pulled away one night while I nursed him. His eyes rolled back in his head, and he quit breathing. I screamed for my husband, who improvised his own version of baby CPR.

It worked.

I ran for the phone to call for an ambulance. Minutes later we were on our way to Rapid City Regional Hospital where the problem was diagnosed. The next day a medical transport plane flew my son and me to the University of Nebraska Hospital in Omaha for more corrective surgery. The surgery was a success, his recovery slow, steady, his long term prognosis good.

Even so, I struggled.

Our son’s health setback gobsmacked me. My husband, my parents and siblings, my friends were hundreds of miles away. I was alone on my birthday. From my perspective, the situation felt unsurvivable.

Yet we survived.

Our young family (including our son who is now 40) endured several more complications that required unexpected hospital stays. Over time I developed these 4 ways to cope with the train wrecks that are part of raising a child with disabilities and special needs.

Tip #1: Note the Ways God Prepared You

Sending our baby off to surgery again was hard. Even so, I was a better prepared parent the second time around. During the stay at Rapid City Regional, my husband went home and packed my suitcase with clothes and items we knew made hospital stays easier. Also, the hospital was a familiar place. I knew nurses in the neonatal intensive care unit I left them a message, and several of them visited. Those details showed how God had prepared the way, that this hospital trip was part of His plan. Let the evidence of God’s sovereignty over your family’s train wreck do the same for you.

Tip #2: Find Blessings Along the Way

Several blessings surprised me as the days unfolded. As a nursing mother, I had a seat on the medical transport plane. In a pediatric wing, even in 1982, I was treated like royalty. I stayed in my son’s room. They provided toiletries, a shower, a breast pump, and meals at no cost. Because my basic needs were taken care of, I had energy and time to advocate and care for our son. When we as parents look for and are buoyed by blessings in hard times, our capacity to care for our children grows.

Tip #3: Ask for Prayer and Practical Help

The prayers of friends and families made a difference during our son’s many surgeries and recoveries. I learned to ask people to pray in specific ways, and they did. When I finally requested help for specific, practical needs, the people who responded revealed God at work. When you ask for practical help, God will make others the answers to your prayer. Can you think of a better way to cope when life is hard?

Tip #4: Tend to Your Needs

When there’s a special needs train wreck, our first priority as parents is to protect our kids. I spent days protecting our son after his surgery. Eventually he stabilized. The nurses provided good care, and I could tend to my own needs. But I felt guilty and selfish paying attention to myself instead of him. How can we avoid that trap? By tending to our needs when our kids are in good hands. Those hands may not be as capable as ours, but they are good enough for a short time. Take advantage of those good enough hands while we can. so we can take care of our needs and return refreshed, recharged, and able to survive the ride.

Written by Jolene Philo

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.

When The Rug Gets Yanked Out From Under Your Life

The last year and a half has been a doozy for me, and I’d guess it has been for many of us for different reasons. I mean, 2020-2021, seriously? Over this year and a half my personal inner-life journey has taken me on quite a ride and while circumstances have offered up different challenges that haven’t resolved yet, my personal journey has been life-giving.

How does that happen? How can we not have circumstances align with what we want or need, yet have our heart, mind, & soul thrive anyway?

I’ll give a caveat that my most basic physical needs were met. I had a roof over my head, heat, food, water, sleep, and my immediate family with me whom I love dearly and who love me. The rest of life, including a house, friends, church, church family, homeschool group, and a significant chunk of our income, well, those were stripped away and my health was already greatly diminished, so that’s where I was a year and a half ago.

How do we move forward when the rug gets yanked out from under us and our life, as it has been, as we liked, as we dreamed of and worked to build, suddenly crumbles? For some of us that day is when our child gets a diagnosis that we know will change our lives forever. For some, a job loss. For some, a support system we depend on suddenly isn’t dependable or even available. What then?

Finding a private place to melt into a pile on the floor and cry it out with a bag of Lindt chocolates (my personal favorite – the chocolate, not the melting into a sobbing mess) close at hand may come first. Screaming to God about it might happen too. Grief – however that looks for you – is important. Acknowledging the pain (in a healthy way – not hurling anger on everyone around us) is critical! If we bury it, it will fester and cause other problems.

After scraping myself off the floor and expressing my feelings and thoughts to God repeatedly, this is what I did. I made a conscious choice that when I stepped out of my beloved house and into my new (not what I would have chosen) residence, I would NOT complain. Complaints would not cross my lips. I could still acknowledge & grieve the sadness of the losses, but I would not complain about the present.

It took several months, but the resolution to not complain morphed into intentionally looking for things to be thankful for – every day. And when challenges arose, to look for what I could be thankful for in the situation. I didn’t deny that it wasn’t ideal or that it wasn’t hard or unwanted, but I’d look for the good in it.

Instead of griping about the hot water running out 6 minutes into my shower, I could be thankful for the hot water I did have and get my hair cut shorter so I could take quicker showers. Guess what, I got lots of compliments on my shorter hair. It suits me better!

Instead of complaining about things breaking, falling off, or getting damaged on our new home (an RV), I could focus on being thankful for a resourceful, capable, problem-solving husband and it became part of the adventure.

One of the latest examples, I was commenting to a friend how I felt bad for my kids and how they weren’t getting to experience a typical (even typical for homeschool) high school experience with friends close by, sports, group activities, etc. during these critical years. She graciously called my attention to all they are getting to experience. A few hours later as I reflected on the conversation, I realized an unfavorable trait (that isn’t the kind that can be overcome with teaching or training) that had characterized one of my sons a good part of his life had completely disappeared over the previous year. Oh my, I’d been focused on what my husband and I weren’t able to provide for them and what I thought was lacking and instead there was so, so much he had gained that was worth invaluably more!

I have a long way to go in overcoming my negative thinking and making thankfulness my default, but one day at a time, I get closer to that goal!

How about you, have you ever taken a period of time to intentionally focus on annihilating complaining and to be purposefully thankful? How did it go? What happened?

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.

Mama Warriors

You know the old joke where you put a sticky note on someone’s back with a message and they walk around ignorant with others secretly laughing at them? As missionaries for 18 years, there have been many times we’ve had a target painted right on our back – by Satan. A few times, when things got unusually bad, I felt that target stuck there and took it off through prayer, prayer, more prayer, praise, thanksgiving, and faith.

Unfortunately, more often I ignorantly went on with my life, pushing forward as a wife, mom, caregiver, missionary, striving to make headway and often having it sabotaged. When you know that sticky note is there, it can be easy to take off. When you don’t realize it’s there you go on ignorantly struggling against all the wrong things.

I'm grateful for Naomi Brubaker and her insights on spiritual warfare . It's real. Yes, it can be over-hyped. But that doesn't make the fact that it is a reality in some instances any less real. Don’t throw the baby out with the bathwater. I’ve often been more guilty of being naïve to the influence and reality that Satan and his minions have in my life, family’s lives, and our circumstances and then I didn’t counter his influence.

If that’s true of you, I’d encourage you to spend some time praying for insight into areas of your life where Satan may have a stronghold or influence and then praying for God’s protection over your lives and booting Satan out. You’ll likely have to do that repeatedly in different areas, different ways, different times and circumstances. He is not a gentleman. Just because you told him to get lost doesn’t mean he’ll never try attacking again. If you’ve claimed Jesus as your Savior, you have the upper hand. Satan can attack (just ask Job) but you can counter and win through prayer!

Prayers that win spiritual battles include some or all of these:

1.     Praise – of God and who He is (SO POWERFUL!)

2.     Thanksgiving – to God for what He has done and good things He has given

3.     Truth:

a.     Acknowledging the reality of sin or wrong thinking in your life

b.     Standing in the truth of the Word of God and countering lies with it

4.     Faith – in God, who He is, His power, His authority, your standing, rights and authority in Him

5.     Word of God – it is your sharpest sword and is what Jesus used against Satan’s temptations in the wilderness. Read it, speak it, pray it! 

Lastly, if aren’t making headway or gaining victory on your own, and haven’t already, ask others to stand and battle with you in prayer! Sometimes it takes an army.

Let’s be mamas who stand up and fight for ourselves, for our husbands, for our kids, for our families, for our friends! We have powerful weapons, we just need to wield them!

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.

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.

To The Caregivers

She was three, he was seven and I was in crisis.  I was overweight, overtired and overwhelmed.  I felt so sick and old. 

I felt all of this, but I so rarely reflected on my state of being that I almost didn’t notice that I felt this way at all. I was just not on my own mind in any way. I would read about “self care” and think it such an indulgent luxury.  I would get so taken aback at the mention of it, as if I was making a choice not to care for myself.  Of course I didn’t feel that was the case.  I was allowing my hectic circumstance to be the fall guy for that.  I was so deep into my role as caregiver that I couldn’t see how my body was struggling.  My child was being tested for vitamin deficiencies and receiving appropriate supplements.  Both of my children were eating pretty clean diets free from inflammatory foods, artificial ingredients and they were eating organic choices as much as possible.  I was not.  I was treating my exhaustion with food, and making all of the wrong choices. I was convincing myself that I deserved the joy that overindulging in food brought.  I earned it.  Eating was something I looked forward to.

There was no time for a spa day, or even to enjoy reading a novel.  There was time to get through the day, most of the night, and then crash into my bed, but not before “medicating” with some yummy meal or treat eaten way too late and consisting of absolutely terrible choices.  With zero help in the childcare department, jogs or trips to the gym were also out of the question.  So, this is where I was.    

Then the pandemic hit our world and our world hit the pause button.  Many people began to overindulge and neglect physical wellness in an effort to deal with all of the emotions living through the fear a pandemic brought on.  I suddenly wasn’t alone in this struggle.  So many people started  “medicating” with food as I had been.  Comfort food and sourdough bread recipes were all over social media, and many people soon felt ready to reign it in.  This was my window of opportunity.  Something was awake in me, finally.  I did a deep dive into wellness with others who had gained extra weight during the pandemic.

God led me to a plan that really helped give my body the respect it deserved. 

Encouraged by a family member, I dove in.  I still couldn’t get to a gym, and I still was running wild until far later in the evening than typical, but when I ate I was eating vegetables and meat.  I was choosing fruit and eliminating all of the things my child had eliminated years before.  I cut out those same artificial ingredients and inflammatory foods.  I began taking the supplements my body needed and I started pulling myself out of the fog.  I started loving on myself as I had always done for my children.

Quickly life became easier.  I found I could handle the hectic moments with more grace for myself and my family.  I realized that the way I love and care for my children, is the way God loves me. I was not caring for my God-given body as I should have been.  It is such a gift to be given a body in the first place.  Isn’t it?  

So many lightbulbs started turning on for me.  As much as, my role as caregiver to my children requires, as does my role as caregiver to myself.  It’s easy when you’re navigating special needs or medical fragility within your home to completely forget about yourself.  It’s not at all a case of that horrible phrase “letting yourself go”.  In my experience, it was a case of just completely forgetting my health needs altogether in the flurry of life.  We can’t do that.  We can’t get lost in the”figuring it out” and the “making our way through”.  We need to try to honor ourselves and our bodies and our children will be the beneficiaries.  First off, we’ll hopefully improve our chances of living longer.  Next, when we, as caregivers, feel well and healthy, have energy and aren’t flooding our system with terrible food additives and sugary junk we can care better for those we love.   Finally, I think when you’re taking exceptional care of what God has trusted you with, your heart feels lighter and you can begin to fulfill the role you have before you. 

Our homelife has calmed significantly in the last year.  There are many reasons for that. We’ve found appropriate treatment and a proper diagnosis for our child, we’ve settled more comfortably into this role of caregiver, and we have now turned our eyes toward caring for ourselves in the same way we feverishly care for our children.  

Everyone is the caregiver to something or someone.  It may be a child with special needs, it may be a beautiful golden retriever, and it may be a dear friend. May it always be that we are caregivers to ourselves first and foremost.  If you have forgotten yourself for a bit, as I did, it is my hope that reading this will serve as a reminder of what a gift our bodies are and of how deserving you are to feel outstanding in yours. 

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.

You're Grounded!!!

Let’s talk parenting!

 Parenting is one of the greatest joys and greatest challenges all at the same time. Overwhelming joy and deepest grief. This month, we’re looking at something we do daily as a part of parenting…DISCIPLINE. 

We want so much for our kids. We love them with everything we are and have, and yet so often our relationships with them are characterized by frustration, tension, and conflict. When we correct them, what we really want to see is heart change, but most often after a discipline issue parent’s feel they’ve missed the mark or that their kid just hard-hearted and resistant.

But all is NOT lost – there is hope!

In the Hope Anew Online Community during the month of April the theme has been parenting. There are 4 short videos posted there on the subject:

Video 1 – I share some philosophies and approaches Jonathan and I have come to embrace in our parenting after some trial and error and weeding through MANY parenting books & approaches and even counseling courses. I share some reviews of and links to those in the next blog post.

 I also share some things we do NOT do or STOPPED doing (because they were counterproductive, but the most well-known Chrisitan parenting advice says that’s exactly how to parent). And, I share some things we DO do and have found to be beneficial that’s rarely taught.  

Videos 2 & 3 – We take the last part of video 1 (what TO do) to the next level as we look at the book Discipline That Connects with Your Child’s Heart by Jim & Lynne Jackson 

Video 4 – Is about the power of vision-casting and blessing in our kids’ lives.

If you are finding that parenting is an area that leaves you hopeless, exasperated, or isn’t going how you hoped it would (beyond your child having extra challenges), hop on over to the Online Community and take a look at the videos and see what your next step could be in disciplining and discipling your kiddos!

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!

Making Memories Where We Are

Travel.  Wait, what does that word even mean?  It’s been so long since I’ve traveled I almost can’t remember our last real pack a suitcase vacation.  I bet a lot of us feel that way after the year that has just passed.  Many families have been home and kind of grounded from travel. If they have traveled it’s been mostly with the members of their household.  As I watched how people were affected by that and how they responded to having to stay home rather than travel or forego the multi-family beach house, it got me thinking.  I started thinking about how it didn’t feel all that different to me.  I thought about how I’ve been watching families experience travel and vacations from the pages of my social media accounts for years, while seated on the same couch cushion of my sofa.  It dawned on me that this past year gave other families just a taste of how families like mine often function.  

Every member of my immediate family loves to visit and explore new places.  There are various reasons that our opportunities to vacation have virtually come to a standstill, one of them being finances. The cost of therapies and such can add up, and really do a number on your disposable income.  Another reason is that certain invitations to travel that were once there, are no longer there.  None of the reasons, though, are the needs of our exceptional child directly.  Our family could easily accommodate those.  Families in our position know how to make the correct arrangements and preparations. 

If this is your situation, please know that you are not at all alone. For our family, regardless of these hurdles, we were determined to still get out there and experience wonderful times outside of our home.  We’ve really found great ways to work around the obstacles and continue to see new places and find what we like to call “adventures''.  Our adventures consist of day trips doing anything we can find with the one requirement of being back home by bedtime. I’ve become our resident adventure planner, and my family has come to depend on these day trips.  So much so, that the first thing I’m asked on a Friday afternoon is, “Where is our adventure this weekend, Mom?”  

They may not be the same as a week in some fancy resort, but our little day trips have really added to our life experience.  You don’t have to miss out on getting away, just because of your family's differences.  It can just look different.  We’ve visited landmarks and historical spots that I never knew about.  We’ve had beautiful days in state parks and on the beach. We even found an app that guided us through a driving tour of Washington DC!   I do my best to plan every detail, so I can pack our minivan chock full of anything and everything we will need for the day.  With certain food restrictions among us, and special diets, I stock the backseat with a cooler full of approved, but exciting, choices for snacks and meals. We really make a pretty big deal out of these trips.  I tuck in special blankets and use fun pillowcases, to help make that van seat cozier than just a typical weekday trip to the grocery store.

I think it all boils down to finding the joy right where we are.  I don’t mean physically, but more where we have found ourselves right now in life.  Travel does not need to be extravagant to be memorable.  Sure, it may be a while before we’re planning our family adventure to DisneyWorld. In the meantime, though, I can’t think of anything more joyful than the look on my children’s faces as they hop into that loaded up Honda Odyssey bound for a day spent discovering and making beautiful memories.

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.

The Hour

There has always been a time of day in which things seem to be extra hard.  The volume on the emotions are turned up high. It comes as predictably as clockwork each day.  As much as I try to prepare myself for this time, or just embrace it, I can't change the course of that time of day.  It’s in these moments of the day that I begin to question my every ability to do the simple, most innate things for myself and my family.  The morning after a particularly challenging evening, I found myself in the Walmart parking lot writing down the words of this poem.

THE HOUR

5:00- World is collapsing in on itself.

Can I multiply myself to cover all the needs? 

Put out the fires?

5:03-The worst parts of all of us

are sneaking out.

Quickly colliding.

5:13- Need to cook dinner, 

Recipe is too complicated.

Just can’t.

I think I forgot to buy the ingredients, or were they eaten?

I yell.

Get it together.

5:18-Second grade math homework.

The chaos clouds her mind.

She makes the same mistakes.

We do this everyday.

Why does it continue like this?

She’s refusing.

I’m at a loss, 

Be patient.

There’s not enough of me,

I’m withering inside.

Why can I not calm this part of the day?

5:23- Frustration welling up.

They are all fighting.

Now crying.

Lord, surround us.

Don’t even mention the needs of the dog.

5:30- Husband should be home,

No, he said he was working late.

Can’t do this.

I need to change the course we are on.

5:37- Don’t think this will help but- “Pandora play hymns”.

Sing even though you don’t know the words.

Sing even though it doesn't feel like you deserve this.

Dinner is leftovers.

It’s fine.

Turn up the volume on the music.

5:45 -Give someone a hug

Apologize for losing my patience, 

losing my mind.

5:50- Homework finished, incredibly.

Please set the table. 

I still need help. 

We can do this together better.

6:00- Daughter says the dinner prayer.

“Thank you God for my family, 

Did she hear me yelling?

For this delicious meal, 

It’s leftovers from last night!

My friends.

Yes, we need to feel accepted.

Keep us safe and healthy.

I can do this, we made it.

Amen.”

Hope.

Coincidence, I think not, that this poem was scratched down on the back of a piece of paper outlining St. Ignatius Loyola's Examen.  It is a method of prayerfully looking at your day and seeking to find God in it.  So in the company of the Holy Spirit we are invited to become aware of God’s presence and look back on the events of our day with gratitude. The mess of happy, confusing, fun, disappointing, ugly, beautiful moments that made up the day.  We are encouraged to become aware of God’s presence and movement in our emotions.  This is an opportunity for God to point out where we may have fallen short.  We then pick one moment of the day and pray through it with the Holy Spirit.  This could be a positive moment or negative moment, monumental or insignificant.  Allow the prayer to arise from your heart and push you to praise, repent, or ask for guidance. And finally, look forward to tomorrow. Ask God to go before you in tomorrow’s challenges and be a light.  Be aware of your feelings and offer them to God and pray for hope.  

The Lord’s love surrounds those who trust him.  -Psalm 32:10

Be joyful because you have hope.  Be patient when trouble comes.  Pray at all times. -Romans 12:12

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. 

Weeping may endure for a night, but joy cometh in the morning. Psalm 30:5

To me, there are no more comforting and hopeful words than those. That’s my verse.  A lot of people have a verse that just feels all their own, and that one has helped me up and held me up, has rocked me to sleep, and has carried me to morning many, many nights.  Of course, it isn’t solely my verse, it may very well be yours, too.  I think it brings solace to people in many stages and situations in life.

There is a certain amount of daily trauma that goes along with figuring the ins and outs of life for a child that is exceptional in one way or another.  At least, there is in our situation.

There is the  trauma I have felt as a mother waiting through an entire school day, just praying my child doesn’t wander from campus.  There's the trauma I’ve felt as a mother watching my son live life with a chronic illness and almost daily physical discomfort.  There’s the trauma I’ve felt as a mother watching many aspects of childhood just pass us right on by. I tend not to focus on the parts of life that are painful.  However, the mental and emotional toll is great.  For me, the worry is the hardest part to shake.  

I just want to do this right.  I want my children to live the very best life they can.  I think that’s what every parent desires.  So, those calls from school, the staring eyes at the grocery store when behaviors completely out of my childs control creep in, the setbacks at home--though they are mixed in with wonderful moments of thriving and progress and utter happiness, they are the ones that bring tears in the calm and stillness of night.  Those moments are the ones that flood my mind as I’m trying to sleep.  They seem to land on my heart and the weight can feel unbearable.  They lead me to reach for my phone and begin the reading and researching that I’ve spent countless nights engulfed in.  They lead me to strategize and come up with plans upon plans to help ease my child's pain and struggle through the tough spots.  

Then I think of my verse.  Weeping may endure for a night, but joy cometh in the morning.

Just recalling the words, stops me.  In the act of remembering that verse, I am suddenly brought back to knowing that I am not alone in this, and I don’t have to carry this on my heart alone. The heaviness lifts.  My children are not alone, either.  The hope and reassurance that my child has a beautiful and heaven-sent path ahead floods in.  It’s a cue to stop the wheels of worry and turn to my faith and hope instead.  

I’ve been down this road a night or two, and yes, joy always comes in the morning.  Nothing in the bright sunlight of a new day is ever as dire as it seems in the darkness of the night before.  The hope of a new day is real.  Even though our circumstance is still just as it was, there’s a clarity of mind and a different perspective that comes as we wake. 

When the night feels hopeless, it is a gift to me to be able to rest in the hope of the joy that is surely to come.

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.

One Word That Can Change Your Year – Part 1

It’s a new year. The start of a new year comes with thoughts of fresh starts, new beginnings, and new or renewed goals. I always look ahead toward the upcoming year with thoughts of what I want the coming year to include for myself and my family and what next steps in life would be good for us.

While that is all true of this year as well, this year has a different feel for me – what about you?

I’m a little less optimistic of where things are headed in our country and world. Christianity is becoming more and more criticized and unpopular. Darkness and evil in our society are growing and becoming more commonly accepted.  Within and between Christian groups, there is increasing division and lack of vision.

The year 2020 was a HARD year for the world and our country. Personally, I’m not expecting 2021 to be easier. I see darkness and chaos growing and spreading. BUT, in darkness, light shines even brighter! Light offers hope in dark times. A lighthouse isn’t built to help ships during the daylight, but during the night. While evil and darkness may be increasing, our foundation, our solid rock, Jesus, does not change. Our hope is secure.

That doesn’t mean we won’t experience hard things, but it does mean we don’t need to be consumed by them. Yet, when we live day in, day out in hard, disheartening, all-consuming things it’s hard to hold onto that hope. So how do we do that?

Personally, 2020 was an incredibly difficult year with a lot of personal loss that was all-consuming for a few months. I made a resolution that I would NOT complain about my new circumstances (I started here) and that I WOULD be thankful (I got this this a little later). Truthfully, I could feel that I was being consumed by negativity and it was my attempt to change that. It was absolutely the right thing to do. And this year, in 2021, I want to take that even further.

 Each year I choose a theme word or verse for the year. This year, my word is THANKFUL! Being thankful requires action and intentional thought. It doesn’t just happen, and it doesn’t come automatically. It takes disciplined thought processes and if it hasn’t been a habit, it takes time and practice to changes those negative, complaining thought patterns and to create thankful, appreciative thought patterns. But it CAN be done, and it will change your brain and your life!

 We read, “Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.” in I Thessalonians 5:18. Philippians 4:8 says, …“Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise.”

Being thankful is an act of fixing our thoughts on what is true, honorable, right, pure, lovely and admirable.

In the Hope Anew Online Community, during the month of January, our theme is Thankful! Each week I’m posting a video about what I’m learning about being thankful and how I’m applying it to my life. We’d love to have you join the Community and a group of parents who “get it” as we grow and learn together through the extra challenge of being caregivers.

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!

Three Things That Give Me Hope – Part 3

When we focus on current events in the world and things going on in our lives, it can be easy for our hopefulness to begin to falter. When we place our hope in finances, friends, family or resources (including medical resources for our kids), it will eventually fail.

This month we have been talking about hope and how to truly regain hope during challenging times.

The first week we looked at the challenges of staying hope-filled. The next week we talked about reflecting on God's faithfulness in our own lives as well as in the Bible. Last week, we talked about looking for those "God sightings" in our lives right now...finding the good in each day, even if it is as simple as the sun is shining and looking for where He is at work globally.

This week, we look ahead. As followers of Christ, we have a certain hope in Christ. We know that this world is not our home and that we will one day be with our heavenly Father.

What does our eternal home look like?

Below is one of my favorite passages about heaven.

Then I saw “a new heaven and a new earth,”[a] for the first heaven and the first earth had passed away, and there was no longer any sea. 2 I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. 3 And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. 4 He will wipe every tear from their eyes. There will be no more death[b] or mourning or crying or pain, for the old order of things has passed away.”

~ Revelation 21: 1-4 (NIV) 

There will be no more pain, no more sorrow, no more injustice. Our children will no longer be in pain or need medical treatments. They will no longer be looked down upon. They will be loved.

While the day to day seems long...at times never ending, eternity offers perspective. It offers hope.  

As you think about eternity, is there a particular passage in the Bible that gives you hope?

Perhaps you are not a follower of Christ, and would like to learn more about the eternal hope we have in him, I would love to connect with you more and share more about this hope I have.

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!

Three Things That Give Me Hope – Part 1

So how hopeful are you feeling today?

As I mentioned in last week’s article, hope can be a fragile thing.  In my case, it’s not usually just one big thing. I can typically push through if it’s just one thing. I focus on what needs to happen and take that next step forward. No, for me it’s typically a cumulation of things. They can be either big things or small. I get to the point of feeling overwhelmed and can’t see the progress that I expected or hoped for.

How about you? What brings you to the point of hopelessness?

When I get to this point and sometimes I get there more frequently than others, one of the first things I do is pause to look back.

I look back both in my life and in scripture.

I look back at other challenging times in my life and see God’s faithfulness. Sometimes it is easier to see His faithfulness after you’ve been through it, than when you are in the midst of it. By reflecting on His past faithfulness, it helps me to refocus. I no longer just see the problems that I am in the midst of but I see the one who has been with me through the entire journey. When I look to His word, I see the Creator. I see the One who lead the Israelites out of Egypt and parted the Red Sea. I see the One who loved me enough to send a savior. 

When I see these things, it helps me regain perspective. It helps me regain hope.

One way that our family commemorates God’s faithfulness is with a jar of rocks. When we clearly see God’s hand, we write that God sighting on a rock and place it in the jar. 

For example, there was a period in our youngest son’s life when we had to hand make nearly all his food. This meant grinding our own flours, making special smoothies and many other specialty items. Sarah was having to do this with a blender that just was not up for the task. In researching, there was a special tool for the kitchen called a  Vitamix but it was way out of our price range. In the whisper of a prayer, that wasn’t really even a prayer, Sarah asked God to provide a Vitamix. Not only did God provide this for her, but He provided it in the color she wanted…a nice cheerful red color!

This is just one example, of God’s faithfulness and it serves as a reminder to us during those hard times when hope is hard to come by.

When we look back, God’s faithfulness becomes apparent and our hope becomes less fragile.

What is one story from the Bible or one scripture that serves as an encouragement to you? What is one way that you have seen Him come alongside you in the past?

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!

Spreading His Wings

On Sunday we lost Ben.

He had filled his backpack full of things he needed for camp and headed out the door on foot to try to make it to Rockbridge Camp. Out of all the things he has lost because of quarantine, this has been the hardest loss. 

Ben loves Rockbridge because it’s an incredible camp for students with disabilities. We found this camp through YoungLife’s Capernaum ministry. It’s an awesome ministry that has really blessed Ben and our family.

When Ben left that day, I am not sure what he was actually thinking. Was he really trying to get to camp by foot? Or, was he just dying to go somewhere alone? I know what I was thinking, and all of the scenarios in my head weren’t good. In the first 10 minutes I had already pictured him kidnapped and I was scared!

After we realized he was gone, we all headed out on a hunt for him. His brother and Dad were on bikes and I was in the car. Despite our effort to fan out and cover a wide area, he somehow managed to dodge all of us!

Thankfully we finally found him 2 neighborhoods away! Looking back, now what seemed like an eternity really wasn’t that long. He was probably only lost for 20-30 minutes. But, it felt much longer.

While he had a bag packed “for camp”, I think there was more to his escape. Ben is 18 and just like any teen he wants to be independent. That’s something we all want, right? Many kids look forward to being able to walk to a friend’s house alone. Or, the day they get a license and can drive off and be independent. Or, the real independence of living alone. 

And then there it is again —the heart pain. I have felt these pains before. The pain of wanting him to have something that I can’t always give him. Once again, having to let go of what I want and see what I have been given. This has been my heartache my entire life, and I think it will forever be there. You see, I don’t know if I can ever give him the independence he wants. Of course he can eventually take a walk on his own— but I don’t know that I can ever give him the independence he wants.

Special needs parenting is hard. I promise you, I don’t ever regret the gift God gave me. Any day of the week I can list a million blessings I have seen just for having him in my life. But, my heart still aches sometimes. Sometimes I look at him and see an 18 year old who has come so far and other times I see how far there is still to go. We can hide behind our smiles and hang on to each and every milestone we conquer but it doesn’t make any of it easy. Our lives will look different forever.

But on this Sunday I just prayed to have him home. The thought of losing him brought panic, because I don’t know what I would do without him. Even though he can often make my life a challenge, he also blesses me richly. He has taught me to trust God with so many of the unknowns with Ben’s life. And, by trusting Him there, I’ve learned how to trust Him better in other areas. 

Ben has helped me see that God gives me the strength to be the mother he needs. I know I’m not perfect. In fact, there are some days where I feel like Ben and want to pack my bags and leave as well. Those days typically come when I’m tired, exhausted or sad. But even when these days are hard I have hope. My Heavenly Father promises me that “those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” (Isaiah 40:31)

So as Ben starts to spread his wings and find some independence in his own life, I don’t have to fear. I can be hopeful because of God. And, I can spread my wings as well. 

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. 

Stage 5: Beauty in the Journey and Purpose in the Pain

Stage 5: Beauty in the Journey and Purpose in the Pain

This stage is still ahead for us on our traveling the country in an RV adventure and beyond. Sure, the adventure, experiences, and family time will be a tremendous blessing. But I think God has bigger plans than just that. After-all, I don’t think He pried our hands off of our beloved home and property just to give our family a 9-month adventure. (Although I plan to enjoy it immensely!) No, I think He needed to free us up for much bigger things. I don’t know exactly what that looks like yet, but I’m looking forward to finding out. In the meantime, I’ll enjoy this little adventure.

In every episode of the Hope Anew Disability Podcast we say, “We believe there is beauty in the journey and purpose in the pain.” Let me assure you, those are some hard-fought words that I absolutely could not have comprehended, let alone said or created during the first several years of our journey in special needs. So, if you read or hear that and think I must be delusional or crazy, you’re in good company. My former self would agree with you.

When I was in the earlier stages of this journey and I heard parents of kids with special needs talk about special needs being a blessing and how they have learned so much from their child. I would bitterly think that they either: 1. Had an easier journey than we had, 2. Were living in denial, or 3. Were making lemonade out of lemons and refusing to acknowledge the lemons were rotten (so I guess we’re back to denial).

Maybe you’ve reached this stage and can easily see and share with others the beauty in your journey and the purposes God has had in allowing, and maybe even intentionally giving, the pain. This phrase resonates with you and you love it. Maybe you aren’t there yet and this phrase stirs up anger or bitterness. If you fall into the second group, try to put that aside for the next couple of minutes and attempt to take in the perspective of those who have walked the journey ahead of you. Because I have seen parents reach this stage time and time again. It usually takes years and involves some pretty messy struggles and stages to get there, but it is where the journey leads if you keep traveling and working through the ugly, messy stuff.

 In this stage parents find:

• They can help encourage others who are traveling this journey.

• They have purpose in their lives and see purpose in their child’s life.

• They see the gifts of their child.

• They see the gifts other “disabled” (because some of them have abilities abled people will never have) people, bring to the world.

• They are forever changed in how they accept, love, and value others.

• They not only see the eternal value and blessings of life, but the value and blessings that exist now, even in this broken world.

• Their view of God has expanded.

• They understand God used pain and hardship to grow and refine their character, their perspective, their attitudes and that they are a different (and much better) person because of it.

• They would never choose to go back to the person they were before.

• They understand there is mystery in God’s plan that they may never understand this side of heaven, but they have learned He is worthy of their trust, even when they can’t see ahead and don’t understand.

• They can see the beauty in their journey.

• They can see purposes in their pain (and sometimes in the pain of their child).

They have built a new life. They are living a different life and dream than what they had originally envisioned when they were pregnant or getting ready to adopt. Yes, there are things they’d like to do that they won’t ever be able to do. But they’ve learned to enjoy other things that they can do. Yes, there will be things that are hard and continue to be hard. Yes, that makes them continually look forward to the day we go to heaven and all that pain and brokenness is forever ended. But they’ve learned, in the meantime, to see the beauty along the way and that the pain isn’t useless but has great purpose.

Written by Sarah McGuire

If you missed Stage 4, you can find it 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. 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!

A Special Needs Dad's Thoughts About Heaven

Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me.” John 14:6, NIV

I have been thinking a lot about heaven recently. These thoughts bring up a variety of emotions. Since my sons have been born, I think even more about what it will be like in heaven someday with them. And with my youngest being non- verbal, it has me imagining it even more.

The Bible is clear that there is a lot to look forward to.  Many specifics about heaven are not covered in the Bible, but that doesn’t mean there aren’t some absolute truths: There will be rewards (Matthew 5:12); we will get new bodies (Philippians 3:21); there will be no tears or sadness (Revelation 21:4); sadly, not everyone will be there (Matthew 7:21)!

What does this all mean for God’s children who have special needs?

I have to believe that if there is not a capacity for rejecting God’s gift, there will be no separation from God, in this life or after physical death.

Some people may be tempted to view special needs, illness, or disability as reasons to not believe in God. This issue is, of course, a small part of the bigger question of why bad things happen to good people. Again, I can’t claim to have the correct or full answer. Certainly, sin entering the world through the first people and continuing in everyone since (except Jesus) to the present day is part of the answer. Satan’s work is another part of the answer.

To me, though, the part of the answer that is easiest for me to understand and come to terms with is that what is important, lasting, and meaningful is not really about our time here on earth. One hundred years of life (on the high end) is nothing when eternity is considered. So it makes this time here on earth, however long that is, a training ground of sorts: The place to get to know God through Jesus in preparation of knowing Him fully later.

So these special needs are not permanent! This time on earth is short, as God makes clear through James: “What is your life? You are a mist that appears for a little while and then vanishes” (James 4:14b, NIV).

As many parents with special needs children must imagine, my thoughts of Luke being fully healed are comforting and joyous ones. Seeing him in his new body, but still clearly being my “Luke”, having a LONG conversation with him, and seeing him full of peace and joy is a great vision for me. I like the idea of a line of people waiting to talk to Luke, to have conversations for which they have waited a lifetime. I see his grandparents and uncle giving him a big hug and asking him what he thinks about all kinds of things. I see his big brother, Brandon, laughing and playing with him in a whole new way without having to worry about him. I see his mom looking happier than she ever has, connecting in a new way with her boy as they walk along the beach. And I see me with Luke doing things we have not yet been able to do, like going for a run and working out together, going on a campout, listening to his jokes. I’m hopeful we might be able to do some of these things during our time here on earth, but I’m confident we will be able to do these things during God’s eternal life.

Discussion Questions:

1. What do your visions of heaven include? Are they consistent with Scripture?

2. Has your thinking about heaven changed since having a loved one with special needs? If so, how?

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This article is a shortened version of Michael Abb’s writing in Life On The Spectrum. To read more from Michael and the other authors of Life On The Spectrum check out www.lifeonthespectrumbook.com or order the book below.   Because no two people with autism are the same, Life on the Spectrum’s authors all bring their unique perspective and experiences to the table. Their honest, raw and heartfelt stories show how God is at work in the real-world struggles of families impacted by autism.

Buy on Amazon

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Mike Abbs, who graduated from University of Illinois-Champaign/Urbana with a psychology degree, has been a police officer for 23 years. Currently he is a police lieutenant, and he served on the SWAT team for 18 years. When his wife Deb isn’t asking him to write vignettes, he enjoys spending time with his family, eating healthy,  physical fitness, playing fantasy football and watching old movies.

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