Rehearsing Godly Truths

Do you ever say things out loud to remind yourself that it’s true? Do you ever say things to your children with the hopes that that will be true, both for your heart and theirs?  “Today will be better.” “You can do it.”  Hearing these true statements said out loud helps for us to believe that they are true.  I like to think of this practice as rehearsing Godly truths. 

Throughout our day as individuals, as parents, in our jobs and with our peers, we can find ourselves rehearsing what we hope is true. 

My family is in the middle of a huge transition season.  All through the past 8 weeks I have been saying things out loud to my kids that my heart needs to hear.  Today we finished our long drive from Richmond VA to Orlando Florida and the girls asked “When are we going to get there?”  I replied, “Just a few more hours till we’re home.” I needed to hear that we were going home. 

The transition process has come with lots of hard goodbyes.  Our family of 5 is moving temporarily to Florida for my husband’s job and then we launch to the mission field.  To help with the bigger move, we decided to begin the process of getting rid of many of our things before the shorter move. So not only are we saying goodbye to my job, our school, church, neighbors, friends and family, we have let go of more than ½ our stuff. 

It’s hard to let go of your things, even as an adult, but especially as a kid.  Every time I pulled into the thrift store drop off area, my oldest daughter would unbuckle and look over the rear seat of the van and announce what I was giving away. The van would burst into screams and tears. When I returned to the car, we would have a conversation about letting go, needs vs wants and enjoying what we have. 

These conversations were not only teaching moments for them, but helpful reminders to me, that I have all I need and giving things away shouldn’t hurt so much. 

We sifted through so much of our belongings and tried our best to give what we had to people who would continue the story we began. My husband and I had many conversations regarding the larger furniture items in our home. Where would the kitchen table that I grew up eating dinner and doing homework go?  Where would the beautiful leather couch and matching comfy chair go?  And so on.  It was hard to let go of physical items that held so many memories.

Two weeks before our move date, we were still struggling with the amount of things we needed to leave behind.  A friend contacted me and told me about a single mom that had lost everything in a house fire. She and her kids were safe, but left with nothing. I started to walk through my house and take pictures of my things I had left to give away and sent the pictures to my friend.  After a bit of coordinating over the next week, we arranged to meet this woman at a storage unit she had secured.  We loaded our mini van and pickup truck with all the large furniture we were struggling to rehome. 

My kids freaked out. The couch was removed and they were left sitting on the floor, the TV was removed from the wall, kitchen table, dresser my husband built, Christmas decorations and more were loaded to start another chapter in a new family’s life.  It was hard on each of us to release these things that served a good purpose in our life.  I think my kids had the most difficult time watching the TV get handed off from the truck. We finished our time with this mom and her kids circled in prayer together.  We prayed for their future and that they would be able to continue to write stories of love and friendship with our things.  It was not easy, but at the same time it was not hard.  When we got back in the van the kids asked how come we gave away our things (especially the TV).  I once again explained the woman’s circumstances and how we were equipped in a special way to help her. I asked the girls if they felt like they had experienced good things in their life and they said yes. I asked if they felt like they had what they needed most days and they said yes.  I finished telling them a truth that I needed to be reminded of possibly more than they needed. I told the girls, God has not kept the good things from our life and He’s not going to start now. He has more good planned for us ahead, including a couch and TV. Rehearsing this Godly truth with them was such nourishment to my soul.

As we enter into this next chapter I read Psalm 103. These truths can be rehearsed over and over.  Read this out loud to yourself and your children, it’s rich in truth we all need to rehearse.  

1 Praise the Lord, my soul;

    all my inmost being, praise his holy name.

2 Praise the Lord, my soul,

    and forget not all his benefits—

3 who forgives all your sins

    and heals all your diseases,

4 who redeems your life from the pit

    and crowns you with love and compassion,

5 who satisfies your desires with good things

    so that your youth is renewed like the eagle’s.

6 The Lord works righteousness

    and justice for all the oppressed.

7 He made known his ways to Moses,

    his deeds to the people of Israel:

8 The Lord is compassionate and gracious,

    slow to anger, abounding in love.

9 He will not always accuse,

    nor will he harbor his anger forever;

10 he does not treat us as our sins deserve

    or repay us according to our iniquities.

11 For as high as the heavens are above the earth,

    so great is his love for those who fear him;

12 as far as the east is from the west,

    so far has he removed our transgressions from us.

13 As a father has compassion on his children,

    so the Lord has compassion on those who fear him;

14 for he knows how we are formed,

    he remembers that we are dust.

15 The life of mortals is like grass,

    they flourish like a flower of the field;

16 the wind blows over it and it is gone,

    and its place remembers it no more.

17 But from everlasting to everlasting

    the Lord’s love is with those who fear him,

    and his righteousness with their children’s children—

18 with those who keep his covenant

    and remember to obey his precepts.

19 The Lord has established his throne in heaven,

    and his kingdom rules over all.

20 Praise the Lord, you his angels,

    you mighty ones who do his bidding,

    who obey his word.

21 Praise the Lord, all his heavenly hosts,

    you his servants who do his will.

22 Praise the Lord, all his works

    everywhere in his dominion.

Praise the Lord, my soul.

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. 

A 19 Year Old Revelation

I've been a parent of a child with Special Needs for almost 19 years, and I just had a revelation.  I recently realized that even though I thought I had it "all together", I really don't.  I have some scars that are almost 19 years old and I'm just now learning how they impact my life and my mental health.  

This revelation was uncovered recently during a conversation with my therapist.  I started seeing a therapist because of some external adversity that I've had to deal with for the last couple of years.  This external challenge was amplifying my anxiety and panic disorder, and my husband and I thought that therapy would be helpful.  This past session we started really diving into things that cause me anxiety. She had me think about the times I feel anxious and what causes my panic attacks.  While panic is often stirred by an immediate crisis, my anxiety can rise at anytime. It’s something I can not run from most days. (Note:  Anxiety and panic disorder could be a whole separate blog post. I'm not addressing that here, but you should know that this is more common than you may believe, and professional help can make a difference.)  

My therapist has spent time getting to know me and what parts of my life have been difficult.  In my last session, I began telling her about Ben.  I told her about his birth and the way I felt the months afterward, how I responded to his diagnosis and  how I respond to him now.  As I talked I could feel my anxiety rise.  I began to have heart palpitations, stomach ache, dizziness, shakiness, tears and shortness of breath.

After she helped me calm down and relax, she made a pretty stunning observation.  She said "I believe Benjamin is the cause of your permanent anxiety.  You have PTSD and I think you are still dealing with the grief this has caused in your life.”

I was shocked.  I am thankful for him and I clearly recognize how he has blessed my life and others.  I feel equipped to help other special needs parents deal with a new diagnosis.  I even write about all the ways that Ben has expanded my life.  But, my therapist thinks that I have unresolved issues?  How could this be? 

In January of 2002 the diagnosis for Ben was determined about a week after he was born.  As I look back I see how my anxiety grew to an entirely new level: I could not sleep, I could not stop crying, and I could not stop Googling. I had to find answers to how to help. I remember every day living with a tightness in my chest, not wanting to see friends or even get out of bed. Always exhausted, completely lost, and totally overwhelmed. There was lots and lots of crying. I had anger at God. I had at anger at Ben. It felt as if the world was closing in around me. There were times I felt as if I couldn’t breathe, and thinking straight seemed impossible. 

As the months past, I began to understand more about Down Syndrome. I began to meet people who had children with Down Syndrome older than Ben and I thought I was gaining some solid ground against my anxiety. Ben was making progress in  therapy, and was incredibly healthy for a child with Down Syndrome, but with that came the overwhelming realization that we are in this for the long haul. His disability is a long term diagnosis. 

Now as I sat in the therapy it began to make sense. I have a special needs son.  A son who makes me question my parenting, one who will need help to live alone, a son who will never truly leave the nest. He has trouble articulating his feelings at times. He needs help with some daily living tasks. I find myself thinking of ways to help him become more independent but immediately feel like a failure when I am not consistent. I constantly clench my teeth, at times my chest feels as if an elephant were standing on it, and my heart hurts at times for my son who I know has a long life battling odds. I feel like I live  in a constant state of “waiting for the other shoe to drop” and can at times  feel the emotional spiral. 

 I know many special needs parents struggle with anxiety. Learning that my anxiety is essentially post-traumatic stress disorder is helpful.  I know that it’s relentless and traumatic in nature.  But, I know where it comes from now.  This awareness will also help me manage my anxiety.  I know that I can "fix” some things for him, but I can't address it all.  

Being a parent of an individual with special needs feels like you have to give the absolute best of yourself every single day.  We want to do the best for our children and be "on top of our game".  But, we also have to recognize where we need support.  I have a great therapist now.  I have also joined Facebook groups to find parents who “walk my walk”.   I can find answers in these circles with comfort and no judgement. I have a “tribe” of friends who love me and are there for me when days are tough. I have a church who loves me and more importantly love and include Ben. I am praying over time I‘ll get closer to “fixing” my anxiety the best way I know how. 

As parents, we tend to give our all to our children. However, if anxiety is standing in the way of the best version of you, it is imperative for you to remember to take care of yourself and to develop coping strategies. You are important. Your anxiety is real. Everyone needs some help at times.  Make sure to ask for help and be willing to accept it. 

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. 

We Are In God's Loving Hands, Always

One of the hats that special needs parents wear is that of a risk assessment manager.  Depending on the special needs your child has, this looks different.  In our case, without even knowing that I’m assessing risk, I am nearly always assessing and maneuvering around potential meltdown triggers, dangers and needs. It’s amazing how fast I can survey an environment and pinpoint each and every possible worst case scenario.  How fast I then come up with a contingency plan for each possibility and a plan for continued vigilance and surveillance until our time there is over.  I am always two steps ahead in my mind.  Many times the worst case never happens, but many times I’m right on and I am ready.  My kiddo sees these risky spots just as quickly as I do, it seems.  He is also super vigilant in his surveillance of a room. For this reason, I am just always on my toes. 

There are emotional risks that are also assessed.  Will we be embraced or accepted as we are in this environment?  Will our hearts, both my child’s and mine, be safe in this space, with these people? I can make sure that a door is locked, or that there is appropriate physical accommodations made for our needs.  That part is easy.  It’s the emotional risks that often give me the most pause. 

There was a time that my heart had been hurt by watching how some people respond to us.  I was so afraid of my child ever feeling like he was less just because of things that are completely out of his control, and of myself feeling that parental pain of observing that, that my first thought would be to sit it out.  I never did.  I wanted to.  I wanted to protect us from the emotional risks so badly, that I’d consider missing the parts of life that make for a full and vibrant existence.  

I never benched us.  We never sat out, and you shouldn’t either.

Instead, the route I’ve chosen to go when it comes to shielding our hearts, is that of specific and focused prayer.  We go.  We are now making our way through the Christmas season.  A time of excitement and hope and waiting.  There are so many opportunities to encounter this pause.  Should we go?  Will we fit?  I no longer entertain those old fears when they enter my mind.  I take a deep breath and ask the Lord to guide our day, our thoughts and to be with the people we encounter.  I ask that he’ll grow their knowledge and acceptance through their time with us.  I ask that he’ll guide their hearts to be inclusive and accommodating.  I ask that they not treat us like we’re different, because we really aren’t.  And, I thank him for the grace he’s given me, as a parent.  I pray that I’ll be able to give that same grace to myself, as I navigate environments that aren’t set up for us, both physically and more importantly emotionally.   Finally, I thank him for trusting me with this incredible child, and pray that I am graceful in my parenting of him.

Not one thing has grown my faith more than this practice of specific prayer.  When the Lord answers your prayer directly, in real time, it’s life changing, life giving, and sets you free from fear.  Choosing faith over fear is no longer a choice for me.  I just plain have faith.  I’ve entered spaces after praying like this and experienced the most beautiful, caring and loving interactions.  I’ve met people that have become friends to me, and my child has also found real friendship and acceptance, as well.  I’ve felt that we were safe and protected, just as we are. 

This year, there are fewer opportunities for large gatherings.  If you do find yourself looking at an upcoming outing or event with that familiar pause, whatever you do please don’t sit out.  Take a deep breath and pray.  We are in God’s loving hands.  Always.

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.

Nine Ways To Make The Holidays Great

I saw on Facebook this past week a post that said “Ruin Thanksgiving in four words.”  The post received 186 comments in one day. I didn’t post a comment because I want to try my best to maintain positivity when all possible, but there is something about the holidays that evoke a sense of anxiety, fatigue and even disappointment. These feelings seem to be felt universally.  As I scrolled through the comments, memories of holiday gatherings of the past surfaced.  Burned food, awkward interactions with family, ex’s, political conversations (especially in an election year), missing critical food elements and more were represented.  

The question comes to mind, how can it be any different?  How can we switch the narrative to “make the holiday great in just four words.”?  How, especially this year- which has embedded a layer of fear and anxiety in so many, can we make a great memory of the holidays?  I sift through my memories both good and bad, I return to the simplicity that feels comforting in the holidays.  The year that we opted for a paper table cloth with crayons and paper plates was loads of fun for the kids and really easy on clean-up.  The year that the weather was so mild that we moved the table outside and ate while the leaves fell around us. When we celebrated with lots of friends or no one but our sweet babies, or special dinners with family who are no longer with us.  With so many ways to ruin the holidays, what are the things that make them great, truly special and really at the core why we bother to do all that we do to make it happen?

Top ideas for changing the narrative and making the holiday season great in four words :

1. This year choose less

Yes less. Less food, less presents, less rush, less stress.  Let’s just choose less. In choosing less you, choose what you need most and what makes you most happy.  You will find more out of that less, more joy, more rest and more content family time. We are in the process of moving this holiday season and have been living with less stuff in our house over the past few weeks. The children’s toys have been reduced to one box of playdoh and Legos.  Yes that’s all- 2 choices. This reduction has been very positive for everyone.  Less is freeing and I promise it’s better.   

2. Do what is easy

Sometimes the complicated recipes are just too much. Sometimes fulfilling all the traditions of years past feels really hard.  I have to admit I have been cutting corners in the kitchen more and more.  I have also been trying to look for the easy button more. How can I cut the parts out that don’t bring the most joy to the experience. This path is not a cop-out, but an attempt to spend more time in relationship rather than doing more tasks.  A friend mentioned today ordering her Thanksgiving from a local restaurant this year.  Although this cuts a lot of corners, it seems like a really great idea this year.  Not only is she alleviating many time consuming tasks, but she is also supporting a local business who may be struggling. She noted she was still cooking her famous biscuits, but getting help on the other parts.

3. Bring family in virtually 

This is no one’s preferred method of being relational, but especially during COVID and the heightened germ season, it’s a great alternative. It can also be helpful with challenging relationships in which a longer visit may be too much.  Make it fun and come up with a theme for the virtual party.  Everyone brings a festive snack to the virtual time, wear a fun hat or eliminate use of a word like “turkey” during your conversation.  

4. Make it kid friendly

Let’s just soak in all the good being a parent of young kids brings!  The year we put paper on the table and set out crayons was a fun memory for everyone.  Making it kid friendly also means getting kids involved. Let the kids help cook foods they like, or have them pick recipes from Pinterest to add to the table.  The more ways a child can feel a part of the holiday preparation the more they too will find joy in all of the parts of it.  

5. Do something totally new

Switching things up often eliminates the expectation of what it should be.  My mom made a delicious traditional green bean casserole every year at the holidays.  It was a family favorite.  A few years ago I was hosting Thanksgiving and I decided to do a new twist on as many of the dishes as I could find.  My thought was that it would be familiar but lessen the comparison to my mom’s version. My mom and sisters were especially concerned about the green bean casserole being altered.  I found an updated recipe and everyone loved it more than the old one.  Doing the same things each holiday provides rhythm and predictability, but switching things up can infuse a freshness to the celebrations that may have fallen away over the years.  Doing something new minimizes expectations engrained over the years that are hard to meet.  

6. Remember “why” it happens 

Why do we take a family photo every Fall? Why do we make so many dishes for one meal?  Why do we bring a real tree in our house (they are so messy!)? Why do we search for that specific present that is nearly impossible to find?  Whatever it is that feels so crazy or unnecessary, try to remember the why.  If you can not fully identify your “why” you need to assess why you choose to continue to do it.  

7. Find a quiet moment 

I don’t know when or where you will find this moment, but find it!  This is going to be critical to survive the holiday.  I promise there will be an opportunity to find this quiet moment.  It may be on a last minute run to the grocery store, by yourself, that you turn on YOUR music and sit in the car while the song finishes.  Maybe it comes when you wake up early to begin the cooking, or late at night when wrapping that present in secret.  Find this moment and recognize it and soak it in for all it offers in refreshment.  

8. Get some fresh air

We have had some tough days since quarantine started in March- more tough days that I remember having in 2019.  The smoothest days are the ones that we are outside for as much of the day as we can possibly squeeze.  Plan to be outside.  Go for a walk, ride a bike, rake a leaf pile and jump in it.  The fresh air gives everyone a new attitude and it also gives people needed space.  Set up a yard game and get out there and play. 

9. Think of serving others

Whenever I feel down on things, I turn to gratitude and then to serving others.  Find a way to serve others this holiday season.  I have seen people put snacks and drinks in a basket outside for the delivery people.  Give your mailman a note and a water bottle, write cards or make artwork for a local nursing home, buy new socks and keep them in your car for the homeless you may see. There are so many ideas, so get your children involved too.  Service and gratitude are key characteristics that we want our children to exemplify.  They won’t become better at these things without practice, so include them in the process.  They may have a terrific idea for how to serve someone and just need a little help. 

So there you have it. 9, four word statements to improve the holidays and add some ideas to refresh the holidays and not ruin them in 4 words.  Rather you can make them wonderful in simplicity, newness, serving and identifying your priorities.

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. 

Confidence of a Five-Year-Old

I want to live with the confidence of a five-year-old.

That thought flitted through my mind while my grandson hauled out his art supplies the day before Halloween.

“I’m turning the kitchen into a haunted house because I just learned how to draw cats,“ he informed me as held up a picture. “I can draw them really good.”

The picture below is one his cats. At first glance, I thought it was a sheep.

He was so confident in his drawing ability, he took a break from creating masterpieces and gave his little sister a tutorial in how to make them.

She was awestruck by his skill. “Your pictures are beautiful,” she breathed.

I was awestruck by his confidence. “How did he develop such self-assurance?” I wondered.

He drew picture after picture, blazing through paper and tape as he hung them from every available space. I could see how the love his parents speak into him every day is building him up.

Tell us how that made you feel.

We love you because you are our little boy.

You’re a good problem solver. You keep trying until you figure it out.

Look at all the things you’ve learned to do.

We are so glad to be your parents.

Even when my grandson is at his worse, and his parents hold him accountable for his behavior, they cover him with kindness and love.

Everyone makes mistakes.

We will always love you.

Have I ever told you about when I messed up when I was little?

Whatever happens, you are our son.

We forgive you.

Every day, in every way possible, this grandson of mine is wrapped in kindness and reminded of his parents’ constant love. The foundation of security they continually reinforce gives him the confidence to learn to ride a bike, to tie his shoes, to ask for forgiveness when he messes up, and to trust that his parents will grant it.

I want to live with the confidence of a five-year-old, and I imagine you do too.

But how can we do that when parenting a child with special needs constantly exposes our inadequacies? When our inability to provide what our kids need makes us feel like failures?

We do it by imitating my grandson. By listening to the words our heavenly parent continually speaks into us.

In Jeremiah 30:3, our Father says “I have loved you with an everlasting love; Therefore I have drawn you out with kindness when his rebellious children were at their very worst.

In Romans 8:32, Paul describes our Father’s love by saying, “He who did not spare His own Son, but delivered Him over for us all, how will He not also with Him freely give us all things?”

In the Old Testament God built a foundation of security under his children. In the New Testament, he reinforced it in the shape of a cross. This security gives us confidence to pursue treatment options, speak up at IEP meetings, connect with other parents, make difficult phone calls, to seek forgiveness when we mess up, and to trust God to grant it.

For the rest of my days, I want to live with the confidence of a five-year-old. Thanks to the example of a little boy who draws cats like a budding Picasso and the word of God speaking truth into my heart, I can. So can you.

Written by Jolene Philo

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

Thankfulness When Life Stinks – Part 2

Last week you learned my word of focus for 2021 is thankful, and heard part of my story about the end of 2019 and first part of 2020 where we learned that there was mold in our home making me very sick and that we decided to move out of our dream home and property. This entailed us also having to get rid of nearly everything that was special to us and the life we’d built together over 20 years. It also left us homeless and living with my in-laws in their two-bedroom home and cut off from our church, where there was also mold. It seemed like we’d lost everything except each other and our extended families in the span of a few months.

Loss, so much loss. Grief, deep grief. So how do I get from there to thankfulness?

As part of my recovery from mold, I took a 3-day brain training program that has shown excellent results and is recommended by top medical doctors that teaches a person how to retrain the limbic system (found in the brain) so that it no longer over-reacts to toxic stimuli such as mold, chemicals, etc.

Summarizing 3 full days of training into a couple of sentences will over-simplify it, but here we go. It basically taught how to be very intentional with one’s thought processes in a specific way, basking in positive thoughts and experiences of the past and future (before and after, but not during, illness) and dwelling in those thoughts and emotions for a significant amount of time each day. This changes brain connections as well as body chemistry. Again, a massive over-simplification, but that’s the gist.  

Does that at all sound familiar? It brings to mind Philippians 4:8, “And now, dear brothers and sisters, one final thing. 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.” And it’s preceded by verse 6 & 7, “Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” (NLT) Did you catch that, “Fix your thoughts...”  also translated, “dwell on”, “consider” “think about”. This isn’t a passing thought. This is a park it and sit there for a while.  

That’s exactly what the brain training program was telling me to do too. Think these (very specific, prescripted) thoughts. Dwell in them. Fix your mind there. Sit in them. Feel them thoroughly from the top of your head to the bottom of your toes. Every day. For an hour. 

Considering the options available to us in our circumstances, we decided to get a new travel trailer (free of mold and furnished) and travel the country for a year while continuing to work and homeschool fulltime (no, not a year-long vacation). 

Being as astute as I am, I realized that going from 2,000+ square feet and 4.5 acres of space to approximately 300 square feet of space was going to come with some adjustment for our family. Knowing that we were all struggling with what we were giving up and what we were going to, I resolved that stepping through the door of our new home, there would be NO complaining. I would choose to be thankful for what I did have.

I knew there would be hard times ahead where I would be tempted think about what I wished I had and I resolved that I would redirect my thoughts to thankfulness for what I did have here and now and I intentionally chose decorations to help in that endeavor and remind me on those hard days.  

I bought a grand total of 2 wall decorations for the main area and 1 for each our bedroom and the boys’ bedroom. One in the main room is a white pumpkin and simply says, “thankful.” It’s my favorite and I don’t really care that it’s a pumpkin and will be out of season most of the year. It’s going to be the permanent decoration there (unless I happen to stumble across an even better thankful sign). The bedroom sign says, “Forever thankful, Always grateful, Abundantly blessed” which is absolutely 100% true, but it can be easy for me to dwell on the other parts of my life and this serves to quickly reset my mindset. The other in the main room says, “happy campers” and the boys’ room is painted on a bear and says, “hungry for adventure”. All of them are intended to direct our mindsets and thought processes and set the tone for our home.

We may be houseless. We may be in transition and not know what is next. We may have rough days where 300 square feet seems REALLY small. We may miss friends. We may have issues with the camper as most all campers do, especially new ones that are getting broken in and lived in fulltime. I may be too tired some days to go on an adventure we had planned and it’s our only day to do it. BUT, I will choose to not just not complain, but to be thankful. And there is SO much to be thankful for! And that will change everything.  

Because I still have plenty of room to grow in this process, and I haven’t come close to perfecting it yet, my word for 2021 is, “thankful.”

What is your word for 2021?

P.S. Understand that I’m NOT saying I didn’t need to grieve. Or if you have gone through or are going through a hard time of loss, that you don’t need to grieve or that you won’t need to revisit that grieving process ongoing at times. Do understand that I’m saying, at some point, after expressing and working through grief, we need to transition to looking at what we do have and what we can be thankful for, while at the same time acknowledging what we have lost.

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!

The Waiting Room

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

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

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

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

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

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

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

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

Written by BreAnn Tassone

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

Thankfulness When Life Stinks – Part 1

A friend of mine is putting together a cool project to kick off 2021, around having people share their word for the year. You know how many people pick a word to focus on each year? That word. When I heard about the project, I hadn’t picked my word for 2021 yet. But within a couple minutes of thinking about it, I had chosen my word…thankful.

Thankfulness is so powerful, yet it takes intention and discipline, at least for me. In a backwards way, not an intentional one, it’s sort of been my word for three quarters of 2020.

Before we get to that, let me share with you about my first quarter of 2020…Just about one year ago this time (it was the first week of November) we finally had what we hoped were some answers to my health challenges that no doctor had been able to figure out – mold, in our house and our church (and homeschool co-op) – the two places I spent nearly all of my time.

Through a series of events, within the week, we made the heart-rending decision that we needed to move. Yes, we would remediate, but we didn’t think I could live there and heal. This was a HUGE decision. Monumental. This was the family homestead. This was the house my FIL had designed and had built and where my husband had grown up. This was the house we LOVED and had planned to live in the rest of our lives. This was the house on the most beautiful, perfectly laid out two acres we’d ever seen with the in-laws next door on another 2.5 acres, giving our boys 4.5 acres to roam and play and built forts and have daily chats with grandma and grandpa. We had a lovely swimming and fishing pond visible through double French doors at the front of the house, pine woods, flowering tree lined drive, fruit trees and bushes, and space to do the homesteading we enjoyed (before I got too sick to do the work).  This was our dream home. This was our refuge.

Can you hear the grief? And that was only the beginning. In the process of getting out of mold, we could only keep things that were solid, non-porous and every surface could be thoroughly cleaned and wiped down with a special solution that kills mold and breaks down mold mycotoxins. We can save the pots and pans, woohoo! (You can hear the sarcasm, right?) That means every item was hand sorted. So the pictures, the 1800 books, my kids’ prized artwork drawing pieces hanging on the wall, the quilt from grandma, my wedding dress, special mementos, gifts of artwork my husband drew for me for birthdays and Valentine’s Day, all our upholstered furniture, heirloom dressers, family pictures on the wall, all my kids’ stuffed animals and nearly all their toys, almost everything had to go. Over two thousand square feet of house plus a garage and workshop and 20 years of memories and the life we’d built piece by piece went down to two utility trailers. And…we didn’t have another house to move to.  

I grieved. Hard. I yelled at God, literally, evening after evening as I sat in the house by myself (we had moved in with my in-laws next door after Thanksgiving, so the rest of the family was there) sorting and throwing out and cleaning. I cried and cried and cried. I asked why, not in a “what can I learn from this” way, but in a, “this is so messed up and makes no sense and how could you” way. I knew God doesn’t necessarily protect us from incredibly hard things and that sometimes He even brings those things to us deliberately to direct us where and into who He desires us to be. I didn’t expect Him to make life easy for me, but at the same time, I sure didn’t like what He had chosen for us at this juncture.

Can you relate? Have you ever been there? Have you ever struggled with what life has brought you? Have you ever hurt so badly you raged at God about it? Or maybe you turned away and rejected Him? Or stopped short of rejecting Him, but turned away and gave Him the silent treatment?

If you are wondering where to go from here or what to do with all that pain, anger, hurt, confusion, grief, sadness, and more Hope Anew has a 5-week Hope & Healing Workshop where walk with you through that process. Contact us and sign up on the waiting list for the next live online workshop.

So how do I get to thankfulness from here??? You’ll find out in part two next Saturday.

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!

Navigating The Special Needs World: 4 Helpful Tips

1. Stay Organized.

So much of our lives are unknown right now. We feel chaotic and cluttered but it’s important to try to stay organized when it comes to your child with special needs. Try to keep every piece of paper that relates to your child’s disabilities, services, needs, schooling and so on. I wish I had kept more of Ben’s paperwork. We moved when he was 5 and some of his paperwork is now hard to get my hands on.  For example, I had a formal document with Ben's diagnosis that was given to me when he was just a week old.  I never thought I'd need that and didn't keep track of it.  But, I did need it when it came time to apply for his Social Security benefits.  We were able to contact his old pediatrician and request a copy.  But, I wonder what would have happened if that Doctor had retired and closed his practice?  Try to keep the current and historical papers readily accessible in print and digital format, if necessary. Occasionally review files and ensure that your paperwork is up to date.

2. Education is important. 

• Educate yourself. Once you enter the special needs world you have to educate yourself on a host of topics that other parents never encounter. It’s good to read as much as you can about your child’s diagnosis and be familiar with terminology relating to it. Learn about your rights, what you can and can’t get your child, any new therapies that might help your child, and lots more. Be willing to learn. Use other parents as a resource. If you don’t understand keep asking questions until you do. Remember you don’t have to accept anything a doctor, therapist or school official tells you – you are the best advocate for your child.  It's acceptable to push back on the opinion's of others when you feel you have to.

• Educate others. People are going to ask questions or make comments. You can serve your child by taking the time to respond with the appropriate information. Ignorance leads to fear. With understanding comes acceptance. We all dream of living in a world of acceptance. It starts with us!

3. Learn to have the guts to stand up for your child. 

No appointments until next May? The school can’t possibly provide an aide? Insurance won’t cover therapies for children with developmental delays? When you encounter a no, don’t take that for an answer. Just keep asking , with a smile on your face. Remember persistence and determination are generally always rewarded and being kind goes a long way. 

4. Remember to take care of yourself. 

Parenting my typical kids is hard work but parenting my child with special needs is even harder.   It is important to take care of yourself or you will burn out. You can not help your child until you meet your own needs. Remember just like on an airplane , you must ensure you have your oxygen mask on first, then help others. Do something that makes you happy. Get exercise, sleep, and eat well. Remember that without a healthy you , you can’t take care of someone else. 

Being an advocate for your child is hard. I believe it’s one of the hardest jobs I have ever had. But it’s also the most rewarding. Believe me you can make a difference for your child and for other children. We can do this one step at a time.

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. 

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!

“Virtually Lost” At School This Year

As parents of three kids attempting to tackle kindergarten, preschool and second grade, it’s about all we can do to not throw in the towel this year. The cacophony of sound from multiple devices, kids refusing to mute and yelling, and our tiny dog barking is a comedy show each day. Each of our kids has different needs and abilities, and I’m inadequately trained to do all but the simplest school activities with them.  I only have to manage the chaos of virtual school one day per week, but it’s humbling every time. Often I can’t get signed on, and I question how much my kids are actually learning in this environment.  

From the sensory barrage that is a tidal wave, one thing I do know they are learning is how to deal with adversity.

Unlike our Heavenly Father, as parents, we  aren’t endowed with omnipotent knowledge on virtual meetings, math, or craft projects. In times like these, our deficiencies become sharply clear as we are exposed.

Unfortunately, kids often view our struggles as a complete breakdown of their parents sovereignty. They are used to us having the answers. I’m sure every parent has the memory of realizing their own parents inability to adequately provide. In that moment, a veil has been torn in their childhood reality. 

What a hard reality for a kid to try and understand, but we shouldn’t try and shield them from the fact we are human. But within this new reality are a few teachable moments, the dreaded teachable moment!

So what’s a regular Dad like me supposed to do in these situations? 

It’s a common trope that “more is taught than caught” with kids, and we know every child is watching their parents with a careful eye at all times. This brief window of time we are in virtual school allows my children see what their Dad’s true super power is: not giving up when things get hard.  This is something we often talk about, but being totally out of my areas of competency forces me to put my lectures into action. Woe to the parent who has loaded their teaching with finger wagging one liners like “patience is a virtue!” or “You will thank me one day!” as turn about may be fair play when the kids have you in the fetal position on the floor out of desperation. Even when we (the parental units) are on the ropes, our kids always rally when they see us make a comeback. 

Raising children with disabilities, you are preparing them for the additional hurdles they will always have to contend with. So show up, and dig in. It’s OK to let them know you are struggling, ask them to pray with you and seek God’s help. Jesus prepared his disciples in how to pray.

Prayer is a powerful weapon, and I don’t ask my kids to use it enough. As my kids and I struggle, it often seems to put a wedge between us (parent/child), but if we can see our issue as something to fight together, we grow in strength. Not only do we know that this helps our children cope with issues, it’s also a scripturally sound practice.

Matthew 18:20 talks about how Jesus is with us when two or more are gathered in his name. Although this verse is regarding sin, don’t let a struggle between you and your child become the “sin.”   Call out the adversity together, large or small. This isn’t about shifting blame, but just being real and admitting “we can’t get the iPad to work, AGAIN, and yes I’ll write an email to the teacher letting them know we were trying.”  It’s often in this critical moment where I get a chance to shine in teaching about perseverance. My child is putting their faith in me and for a brief moment I have their full attention, so how do you consciously or unconsciously respond to the struggle?  

Jesus set such an amazing example of patience and reserved strength in the face of adversity. Even in his hardest challenges, he rose to the occasion to set things right and speak truth (think of his temptations by satan in the wilderness). His approaches were infinitely clever, and in addition to loving people fully, his secondary tactics were never the same (think of all the interactions with Pharisees). There were many circumstances that Jesus encountered that were less than favorable, and often people were actively trying to trip him up or prove him wrong.  And in all this, he was leading with love by making time to teach lessons to his disciples.  That is the way we need to approach overcoming adversity with our children. Not despite the hardships we face, but because of them. 

Often on my virtual school days I feel as though I’m on the verge of my own temper tantrum, and having my kids see me walk back from that ledge is a powerful message. We all fall short of the example Jesus set for us, but if I’m leading with love and showing them the struggles of this world are no match for His provision, that is a win. Sometimes they don’t work out the way we planned, but that’s OK. We get extra recess because we don’t get this blessing of quality time back. Then, like magic, the iPad connects to the meeting, which can only be attributed to divine intervention.

Written by Jesse Brubaker

---

Jesse Brubaker is a father of 3 little ladies and married to Naomi Brubaker.   He loves food, and is especially skilled at making huge messes in the kitchen. He grew up on a small family run Christmas tree farm in Central Virginia & is now a commissioned missionary working toward moving to France to help bring the gospel to Europe.

Three Things That Give Me Hope – Part 2

Have you ever heard the saying that "it can be hard to see the forest through the trees?" To me, that phrase has meant that it can be easy to get bogged down in the details and lose the big perspective. That can be true in our journey too. 

Sometimes, we get so bogged down in the day to day...the researching, the appointments, the (fill in the blank) and we miss the good that is happening. The life giving things. The hope filled things.

Does this sound familiar?

When I lift weights, those muscles I am using grow stronger. This is the same with how we think. When we focus on the negative, those negative pathways in the brain become stronger. It is harder to see the good.

You may be able to recall conversations with people where the negative pathways have become really strong. In those interactions, it can be hard to steer the conversation in a positive direction and you just leave the conversation feeling blah and hopeless. The converse is true when you sit with people who are joy-filled.

This idea of building a positive, hope-filled mindset is a Biblical idea.

Finally, brothers and sisters, 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.

Philippians 4:8 (NIV)

It can be hard to see the good things going on in the world and more specifically, it can be hard to see the good things that are going on in your life…especially if you are living from one crisis to the next.

Sarah has recently began asking each person in our family what one good thing is that we appreciate today. Sometimes a family member shares something big. Sometimes it's a rougher day and the good thing is that the sun is shining.

Sometimes finding the good becomes easier when we look outside of our circumstances and the day to day. It depends where you look though. I wouldn’t recommend looking at the news or even at Facebook.

The best way to find the good, is to look for where God is at work. Find a mission organization or nonprofit that aligns with a cause you are passionate about and sign up for their newsletter. You will have stories of how God is at work sent straight to your inbox or delivered to your front door. Also, find positive people with whom you can associate.

When we start seeing those good things that are happening in our lives and when we start seeing the good things that God is doing around the world, it starts to reframe how we think. It starts to restore hope. 

This week I would like to challenge you to look for one good thing that is happening in your life each day.

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!

The Angels of Our Path

It seems from the moment we realized we had a magnificently special child, the angels were there.  At the time, we may not have recognized them as such, but I can assure you that they were there.  God sent people smack dab into our lives, seemingly out of nowhere, that would make a significant impact on our experience as a special needs family.  If you are just starting this journey, keep your eyes open for them.  They are there.  God is guiding you through their care and knowledge and acceptance.  

As clearly as I can see those people now, there were moments when I was so distraught over the people that I had thought would be there for us and weren’t, that I almost missed them.  There are definitely people that don’t understand how to shepherd you through this type of grief and confusion and the figuring it out time that comes with learning the ropes of special needs parenting.   I think it’s okay to feel disappointment about that, but to understand that we are all just human.  Our friends are human, our family members are human and with that comes differences in how we handle things.  Even if people we expect to walk with us don’t, it is okay.  God sends who we need when we need them.  The number of angels that have been sent our way far out measures any disappointments we felt along the way.  

Each heaven-sent guide, led to the next and the next and the next.  This chain of help and healing and connection is remarkable to trace back.  People speak of “word of mouth” when asked questions like, “How did you locate your Occupational Therapist?” or “ What led you to that preschool?”.  I don’t think of it as “word of mouth”, but as God’s voice leading us in the right direction.  I often pray for God to lead me.  I promise him that I am listening.  If he will lead me, I will follow.  

I have followed these little nudges and as a result, we have found our way thus far.  

The therapist that “everyone loves” somehow had an opening for us in her very full schedule.  She became our first guide.  She taught me about what my son was struggling with, she led me to appropriate care providers for him, she coached me on what he needed, and she gave a name to some of the things we didn’t yet understand about him.  To this day, we feel her impact in my son's life every day.  She led us, also, to the next of our angels here on earth.  My son’s first preschool teacher. Without her love and care, my son might have never gotten the chance to experience school.  She held his hand and accepted his differences while she championed his strengths.  The bond he still shares with her is like no one else in his life.  

Through a course of wild coincidences, our next angel flew in.  She gave my son the chance to learn about the Lord.  As a special needs family, we struggled to find a church that was a fit for us.  This woman gave us a place.  She runs the special needs ministry at a very loved church in our town, and when we met her we found our church home.  Her guidance and friendship and loving care of our son and other children has allowed for acceptance and inclusion to grow in our community.  My son, thanks to her, was able to participate alongside his peers and take part in all of the childhood church experiences that other kids typically get to enjoy.  She led us, also, to another of the angels in our life.  This next angel came into our lives as a suggested summer camp aide for our son.  She was just finishing high school, and she spent the summer with our boy.  To this day, she is one of the only people I fully trust to leave him with.   She connected with him instantly and learned him and loved him. It takes time spent together to really know and bond with a child, and this teenager invested more into my son than I could have ever dreamed.  

The dear friends and family members that have tucked in with us and been a part of our day-to-day life are also a part of this squad sent from God.  They’ve listened and comforted and been strong for me when I couldn’t be.  Then they listened some more. They’ve withheld judgement and just been there. In it. This group just seems to grow as time passes.  Our lives were blessed with even more angels as our son entered elementary school, before we decided to homeschool.  The relationships he formed there have continued on well after our leaving.   Buddies from church, hair stylists, and the list goes on, one after the next, have become interwoven into our story and our hearts. These angels and the many more we’ve met along the way, are our people.  Our team.  Whether we still see them everyday or not, they remain with us.  They are forever family to us, and our gratitude to them and to God for sending them is immeasurable.  

As you travel this journey, look for the repeated names, the coincidental meetings, and know that there are no accidents.  Keep your eyes and ears open for the angels sent your way.  You will find them. 

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.

Got Hope?

Do you remember the old “Got Milk?” ad campaigns? If so, you likely had the image of some celebrity or athlete holding a glass of milk and sporting a milk mustache come to your mind.

I want to start a new campaign and call it “Got Hope?” Instead of athletes and celebrities, it would feature moms and dads like you and I who have a child impacted by special needs. It would feature people fighting cancer. It would feature people who are struggling for various reasons.  Although, the people would need to be sporting something other than a glass of milk and milk mustaches.

Hope today can seem like a fleeting thing…even in Christian circles.

In the last few months I have seen hope placed in many different things. A couple of popular choices that I have heard is a hope that there will be a vaccine developed for Covid-19 so life can return to normal. The most current hope lies in the elections. People of both parties hope their candidate will win and have high hopes for what their candidate will do if elected. 

As parents of children impacted by special needs, we often place our hopes in doctors, support from friends or family, therapies, an upcoming surgery or some other needed resource.

But what happens if that candidate doesn’t get elected or does and doesn’t live up to the expectations you have? What happens when that therapy doesn’t work? What happens when that cancer treatment doesn’t cure your loved one’s cancer?  What happens when those friends or family aren’t there to support you. What happens to that hope?

 When our hope is in these things, it becomes fickle and changes like the wind. If only there was something constant that we could put our hope in. Oh wait, I guess there is. How easy it is to become distracted or forget where our true hope lies.

In a world that is constantly changing and that can leave you feeling like a grain of sand being tossed uncontrollably by the sea, there is a constant. We have a God that created us in His image. He is unchanging from the beginning to the end of time. He loved us so much that He provided us with a savior. He sent His only son to die and rise again in payment for our sin so that someday we can be reunited with Him in heaven.

So let me ask you. “Got Hope?”

Even as a follower of Christ, it can be easy to get distracted and discouraged. Over the next three weeks,  I’m going to share with you three things that help me when hope seems like a fragile thing.

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. 

Not Alone

I have often felt lonely as a mom.  It’s a weird feeling when you are always surrounded by little people to also feel so alone, but I’m rarely really alone. Sometimes the depth of my loneliness as a parent feels suffocating. 

Who could possibly understand this feeling?  Truly, I am not alone.  In Isaiah 7:14 and Matthew 1:22-23 we are introduced to the idea of God being Immanuel, God with us.  This idea of God being with us is an idea I quickly took comfort in. Knowing I was seen by God in my struggles brings me deep comfort for my loneliness.  God is so many things, but having God with me is a place to take shelter. 

The depth of God’s desire to be with us is so strong that He has sacrificed his Son to bring us closer to him.  God is our shelter, protector, healer, comforter, loving father, He is wise, loving, faithful, unchanging, merciful, gracious, creative and he is all these things with us.   

There are so many times my children want me with them.  They want me to protect them and comfort them, show them affection, give them affirmation and remind them that they are loved.  Even though I am an adult I still long for those same things. 

God with me, Immanuel, is where I can find the love, affirmation, protection, healing and strength to be filled and continue to pour out to my children.  My oldest daughter struggled to learn how to ride her bike without the training wheels.  She worked tirelessly for 2 years to be able to ride successfully.  The entire time she was working on mastering this new skill she did not want me to let go of her. 

Having my hand on the back of her bike was a comfort she needed. My hand gave her the physical stability she needed, increased her confidence, and was a huge comfort to her.  Sometimes I want to have someone’s hand on my back as I walk through scary or new situations. I want to have God’s hand on me to increase my confidence as I interact with my child’s educational team at her school and ask for accommodations that will benefit her.  It can feel so lonely to navigate the series of waiting rooms and overwhelming to read the educational and behavioral reports on my daughter. In these challenging situations I am not alone.  I have God with me, offering similar comforts to the familiar hand that guides my daughter on her shaky bike.  

When the Israelites were wandering in the desert for 40 years, God guided them.  God led them as a pillar of fire and a cloud of smoke (Exodus 13:21).  Wandering. For 40 years. And God was with them as a visible presence.  Do you ever feel like you might be wandering in a desert?

I remember before we began our process of getting our daughter identified, I felt lost, wandering, disoriented.  I would move from one failed parenting attempt to another.  Reading blogs, books and anything that could help me feel like I had a handle on how to connect with my daughter.  I was not lost, nor was I wandering, I was being guided.  Do you know what the Israelites did as they wandered following this mystical cloud and fire?  They doubted, they complained and they felt that they were never going to make it out of it.  I have been there, complaining, doubting and feeling like I would never make it out.  Although my daughter’s challenges are quite mild, to see your child struggle in any way is painful.  Navigating this with God is a huge comfort. 

God deeply desires intimacy with us.  He wants to be with us in all situations.  God wants us to go to Him for our needs before we go elsewhere.  God wants to sit with me in the unknowns and the frustrations and also wants to celebrate with me when we have success.  We are his beloved children and he would rather we spend time with him then be busy, worried or distracted.  God with us, Immanuel, is an unending relationship with our creator. Immanuel is seeking us, waiting for us and guiding us into a deeper relationship with him.  This relational time brings joy, peace, comfort, strength and more.  We just have to be willing to be with Him. 

To grow closer to God we should go to God in prayer, walk with God, sit quietly and learn His loving, guiding corrective voice. Studying His word is how we grow closer to the God in us, the God with us, the God who sees us, the God who loves us and the God who deeply wants to be in an intimate relationship with us always.

Fear not, for I am with you; Be not dismayed for I am your God.  I will strengthen you, I will help you, I will uphold you with my righteous right hand. Isaiah 41:10

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. 

Stressed Out?

How is Covid impacting your family right now?

 The list of ways Covid is impacting our families could probably be as long as my arm and I have long arms.

 If I were to ask you how you are doing right now, many of you may reply with the words “stressed out.”

 On average, most people don’t like change…especially change that has been forced on us.  Many of us had to find new ways of doing life or are in the process of figuring things out. We are holding onto future plans loosely. This change, this uncertainty leaves us feeling stressed.

Did you know that taking 5 minutes a day to do something that refreshes you has been shown scientifically to help with your stress levels?

Today, I would like to challenge you to pull out your calendar and schedule 5 minutes a day to do something that refreshes you. Treat it like a doctor appointment that you wouldn’t miss or reschedule.

Here are four FREE ideas that can be done in 5 minutes:

1. Deep Breathing – This effective relaxation technique significantly reduces stress levels. There are many techniques to choose from and they are very effective.

2. Meditate – Specifically, meditate on God’s word and the character of God. God is constant. He is unchanging. Nothing that is going on is a surprise to Him and He is in control.

3. Refocus on Gratitude –Yes, there is a lot of hard but there is also a lot of good change that is happening. For example, many families are less busy and are spending more time together than they did before. Each day, come up with three positives that you can be thankful for that day.

4. Laugh – You have probably heard the saying, “Laughter is the best medicine.” Save funny comics or links to funny videos on your computer. Intentionally seek opportunities to laugh even if it is a little silly or is at risk of being met with an eye-roll. 

I don’t know about you but I can just feel the stress melt off of my shoulders when I have a good laugh.

So there you have it. Four things that you can do for free and that can be done in 5 minutes. The REST is up to you… no pun intended. Before you click that x to close this screen. Pull out your calendar and schedule 5 minutes a day each day next week and plan what you are going to try.  Don’t put it off. This is important for you and for your family.

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!

When Our Lives Are In Upheaval

September makes me think of fall, even though it still feels like summer to start out. I love fall - pumpkins, cooler breezes, apple cider, campfires, hot chocolate,  s'mores, colorful leaves. Okay, I still have to wait a month or so for that one. But, I love fall in the north.

September also brings a settling into the routine of the school year. The newness is overcome and we start to "hit our stride". This year that settledness probably isn't as settled or as comfortable with the changes brought by COVID-19 or maybe the new teacher, school, routine, online or homeschooling is hitting some snags and isn't going well. 

I think we can all agree that this year has been a doozie. September marks the 7th month of our country and lives collectively being changed by the measures taken for a virus and the future being unpredictable. Being families with special needs, we've been through that unpredictable process before, even though this is very different.

But that isn't a new state of being for us, is it? 

What do we do when our lives are in upheaval and we can't project how or when they will be better again? One of the best things I've learned to help my state of mind and emotions during times of overwhelm, unsureness (of course, that's a word!), upheaval, unpredictability, trial, etc are looking at, learning, and remembering the names of God. Many of His names are based on His characteristics - who He is. In the Bible, names were often given based on their meaning. God even changed people's names to reflect a change in their life and to match the meaning of their name to that change.

Psalm 9:10 says, "And those who know your name put their trust in you." Trust in God is something that can keep us sane, focused, and at peace during times of unrest. I don't know about you, but when I focus on me and my circumstances, I lose focus on God and my anxiousness and unrest increases.

Intentionally recalling the names of God refocuses me on Him.

If you would like a great book to learn more about the names of God, check out God's Names by Sally Michael. This is a devotional I did with my boys a few years back that continues to bless me.

Written by Sarah McGuire

Buy on Amazon

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!

As an Amazon Associate, Hope Anew earns from qualifying purchases.

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.