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

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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!

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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!

Stages In The Parenting Journey Part 4

Stage 4: Momentum

The beloved house sold and the future we had dreamed of there was gone. We were out and temporarily living with Jonathan’s parents. What now? After evaluating our needs and resources: I needed a nearly new house that is mold free. We weren’t in a financial position to allow us to get that. One quarter to one third of our income was earned on the property with side businesses, so that was gone. We had very minimal household goods or furnishings, so furnishing an entire house at the same time wasn’t possible either. We also simply didn’t have a peace about buying another house right away. 

As we considered these factors we thought, what better time to get an RV (they come furnished) and go on a cross country tour!?! We don’t have many belongings to store. Our work is already remote. With no housing expenses, we could afford a new travel trailer that would be mold free and warrantied. So, the idea took shape and we dove into researching living costs, depreciation, how-to’s, socialization, how the whole camping full-time thing works, memberships, etc. We left to pick up Ruby (our travel trailer) in Mississippi the day the shut-down order for Indiana came into effect at midnight. So exciting!!!

It wasn’t all sunshine and rainbows. We hit some snags. She flooded the first night we had her as the dealership had installed a washer/dryer unit and then removed it but had forgotten to shut off the water valve. There were some things that weren’t installed right like the front door and the outdoor kitchen door that had to be adjusted and replaced or latches that didn’t catch on closets and drawers. We actually had quite a list, but it was all covered under warranty. And from our research, we knew to expect several things like that as the first owners of an RV as everything shakes down. There may have been one oopsie that wasn’t covered under warranty and that made us thankful for insurance. 

We spent hours upon hours researching, planning, dreaming new dreams, and getting set up. We used her for bedrooms, office, and school space for over four months throughout the pandemic as we have mooch docked (that’s the term for parking and plugging in at a friend or family’s property) and are looking forward to the adventure ahead and all the places she’ll bring us while having the comforts of home right with us. We did a trial trip to northern Michigan that showed us some things that are working and set up great and some that could be tweaked and made better. Already I’m healing and having more energy.

Ideally, to make the analogy between our traveling journey and the special needs journey, we would be a few months into our trip. We’d have our routines and patterns down. The learning curve would have leveled out. We would know how to navigate through all the memberships, and which are our favorite apps for each purpose needed – seriously, I think I have 5 apps for finding camping sites, 3 for navigation.

In the special needs journey, the same thing happens.

After the shock, disbelief, overwhelm, research, and initial interventions, therapist, doctors, crisis, etc. and the super steep learning curves involved in nearly every area of your child’s (and now your) life, it starts to level out. You now know what to do if X happens. You become an equipped advocate for your child. You still may not sleep well as you listen for the beep of that breathing machine, but you know exactly what to do should you hear it. You know when a therapist is absolutely NOT going to be a good match for your child before the child even meets them and avoid it by requesting they be assigned to a different therapist. You know to stock up on chocolate and tissues before the next IEP meeting. You hit your special needs parenting stride and while life isn’t easier, it is less overwhelming.

If the soul questions haven’t hit before now, they often do now. The immediate crisis and initial follow up has been handled and now there’s more emotional energy and time to stop, think, feel, and contemplate the drastic changes in your life. Even if you asked some initial “Why?” questions, they often go deeper now: “God where were you? Why did you abandon me? Us? God, why do you allow evil in the world? God, I’m so angry at you!!! Why didn’t you stop this? Why don’t you intervene? Does praying even work? Do you listen or hear at all? Are you real? Are you good? I don’t know if I believe in you anymore.” This can go into a full-blown questioning of your faith in God, who He is, if He exists, and your place in this universe.

These questions can last a few months or many years. They can lead to wrestling with all the questions and God and finding answers, tearing your faith down to its foundations and rebuilding, staying angry and bitter at God indefinitely, or to walking away from Him entirely.

It’s up to you. You may not be able to change how quickly you go through the process of settling doubts and questions, but you do choose whether you will continue to wrestle with God and your questions and doubts or if you walk away. It takes courage to ask unsettling questions and it takes strength and energy to continue to engage and wrestle. It’s messy and unpleasant. But, if you keep at it (even if it takes years) the rewards are life changing and immensely good as you’ll see glimpses of when we talk about Stage 5.

If you missed Stage 3, you can find it here.

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!

A Good Habit To Break

I overheard a teen at the check out counter the other day use the word "retarded." He wasn't talking about someone but something that was "retarded." Believe it or not, I hear it fairly frequently.  When I do, I try to be polite and let it roll off my back. I'd even say it doesn't rank high in my list of pet peeves since most people don't even think about what it really means.  

The R-word is an expression used for retard or retarded, words considered offensive and disrespectful when used to describe people with intellectual disabilities.  It is also used to insult people, places, and things.  The verb "retard" means to hinder or to make something slow. "Mental retardation" was introduced as a medical term for people with intellectual disabilities , replacing terms that were considered to be more offensive.

Over time, the word "retard" came to be used as an insult, tossed around the playground as a synonym for "stupid" or "dumb." It is not a respectful way to refer to individuals with any kind of disability.

We often fail to understand how words can hurt until they become personal. Right now our country is in a war of words. Books have been written to teach us how to use politically correct words for race, religion, and politics. 

While 'disability awareness' isn't trending like some other topics, I hope you're willing to think about this population for a moment today. 

Here are a few thoughts from a mom of a kid with special needs:

1. Stereotypes are crippling. It affects how the world views my son. He is not dumb or stupid, just a person with  genes ordered differently that you or I.

2. I wish that Ben's siblings never had to hear that word.  I don't want them to think of their brother as "less than" in any way.  He is much more than his intellectual capability.  

3. I'm not trying to censor anyone's language, or be politically correct. I just want to use words that provide appropriate consideration, dignity, and respect for people with disabilities.

4. I'm also not trying to shame anyone.  I've used "stupid" or "dumb" in the wrong way before having Ben.  But, having Ben has taught me that the value of a person is not found in their cognitive abilities. 

5. It's never too late. Maybe you only use the word occasionally or maybe it's a habit. But it's never too late to stop. Here's a way I can help you.

Every time you are about to say the R word... please think about the people you are hurting when you you throw around such a useless word.  There may be someone within earshot that has a friend, sibling or child with a disability.  Consider if their loved one should be reduced to "dumb" or "stupid".  

Also, think about the value that those with disabilities bring into the world.  For example, my kid brings more laughter and happiness to my life than I could ever imagine.  He takes life in stride and could teach us all to not take things so seriously.  Rather than being "dumb", it's almost like he is a genius at teaching joy.

He has compassion. He feels and loves big.  And when you love big, you can also feel hurt deeply.  He hurts not just for himself but for the ones who are hurting around him.  He has a Master's degree in compassion.

He has accomplished many things. He plays soccer, baseball, runs track, and was manager of the Middle School basketball team, High School baseball and football team. 

He is daily teaching me about loving, laughing, patience and working hard.

So the next time you think about using the "r" word just think about him!

It is really a good habit to break and worth it to us!

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. 

Love Your Neighbor

What do I do? This is the question that has kept going through my mind last week as I have seen so many families struggling. I’ve read the Facebook posts of my African American friends and my heart has wept with them. 

I am a middle aged white male that lives in an agricultural area that is 96.7% Caucasian. This makes me feel like I should be the last person to speak on this matter but when you see injustice you can’t remain quiet. When your friends are hurting, you don’t ignore it.

 I am going to step out on a limb here and share what I’ve learned about inclusion based on my experience as a dad of a child with special needs. I’m not pretending to understand the depth of the pain that people of color are experiencing and I’m not saying that the pain or injustice is equal.

As a special needs dad, I remember the disgusted looks when our son melted down in public. The comments and the whispering under the breath. I’ve seen the public make fun of those with disabilities. Kids calling other kids with developmental disabilities names and parents turning kids away so they wouldn’t have to feel uncomfortable around the nonverbal child.

The sad thing is that this is not just limited to public settings. I can share story after story of families who were told their child was not welcome at a church because they were “disruptive” or the church didn’t know how to come alongside them. I can share story after story of families of kids with disabilities that have completely walked away from the church because of how badly they’ve been hurt.

Perhaps this is your story. 

In Matthew 12, Jesus was asked what the greatest commandment was. He replied that the first is to love the Lord your God with all of your heart, soul, mind and strength. He went on to say that the second greatest command is to love your neighbor as yourself. 

As I look back at the period of time in our lives mentioned above, what our family would have wanted and what many of the other families we talk to would have wanted is to be loved and to have their children be loved. 

It is hard to love someone as yourself if you don’t know them.

In that season of a few years where things were especially rough, we only had one couple sit down with us and ask us how we were doing. They then just sat there and listened and listened and listened some more. They didn’t offer advice. They didn’t go into fix it mode. They didn’t make promises.

They loved us by listening.

So back to my original question. What do I do? I can love my neighbor as myself and I can do this by listening.

Written by Jonathan McGuire

Jonathan McGuire is the father of two sons and two sons and the Co-Founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disabilities and special needs 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 about it at WWW.HOPEANEW.COM.  

DUE TO COVID-19, HOPE ANEW IS WAIVING ALL MEMBERSHIP FEES FOR THE COMMUNITY!

The Polar Vortex and Gratitude: An Unlikely Combination

The polar vortex and gratitude. I never thought of pairing the two until the great polar vortex of January 2019. Even though I have lived through plenty of what we used to call "cold snaps".

•           I was 9 in 1965, the year that held the record low temperature for January 30 until 2019.

•           I was 25 and 5 months pregnant in 1982 when the mercury dipped to -45° when we were living in northwest South Dakota.

•           I was 33 in 1989 when school was called off for 2 days before Christmas break, which meant my third grade students had their anti-climactic Christmas party when school resumed in January.

The difference between my response to previous cold snaps and the 2019 polar vortex go far beyond a name change. My response to the 1965 cold snap was delight when Mom said she would drive me to school. In 1982, my husband and I piled into our friends' car and traveled 90 miles to go out to eat, though the thermometer was -20° at its warmest.

In 1989 our son born with medical special needs was 7, and his baby sister was a few months old. By then I was haunted by what our son's early years had revealed. His multiple surgeries, frequent invasive procedures, and nearly constant infections and illnesses showed that bad things happen even when you follow the rules and choose wisely. Therefore, my wisest course of action was to control the situation tightly, to protect my children, and keep everyone inside until the cold snap ended, or we ran out of Kraft Macaroni and Cheese.

By 2019 our son was on his own and doing well. We had begun an intergenerational living arrangement with our daughter, her husband, and their children, ages 3 and 1. We had gone through hard times and good ones. We had seen God faithfully provide doctors and therapists for our son. We had seen Him provide for every hospital and medical bill. We had seen Him provide when we changed careers. We had seen Him provide the houses we needed and could afford. We had seen how much better His plans were than ours. 

So when the temperature plunged in January 2019, when condensation streamed down the windows, dripped from the ceilings, and pooled on the floors, when the dryer quit working and the service people weren't making house calls, when the editor of my latest book for special needs families sent revisions with a short deadline, I didn't respond with my pre-motherhood abandon or with my post-motherhood iron grip of control.

Instead, I responded to the polar vortex with gratitude born of more than six decades of experiencing God's faithfulness. This time, I sat back to watch the latest installment of God at work in our lives. He didn't disappoint.

•           My husband and I saw God expose the condensation issues during preparations for an upcoming house remodel. Now we could talk to the contractor about what to do.

•           When the repairman said the dryer was toast, we were able to purchase one, used for 3 days and returned because the previous owner didn't like the color, for 1/3 the original price, and with the original warranty.

•           I asked friends to pray for me, specifically for wisdom and peace, while working on the requested revisions. The cold weather kept me home and focused, and the revisions went faster and more smoothly than expected.

 For me, the polar vortex and gratitude are closely linked, as is my gratitude for the privilege of raising a child with special needs. You may find that statement ludicrous if you are new to the role of parenting a child with special needs.

Thirty-six years into the job, I have come to trust God's plan for my life and the lives of our children. I have learned that the best gifts are not always easy, but they are always good. This is a promise I can trust and so can you.

This is a hope upon which we can stand together. It's a truth to remember when the next cold snap rolls in and God shows you how the unlikely combination of polar vortex and gratitude, as well as special needs parenting and gratitude, really do belong in the same sentence.

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. The book she is co-authoring with Dr. Gary Chapman, Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, will be released in August of 2019. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.