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.

CHRONIC GRIEF: WHEN LIFE DOESN'T GO AS "PLANNED"

Our church recently had a family game night. I was playing Farkle at a table with other ladies. Two who are currently pregnant, one with her first child. Oh, the anticipation! The glittery eyes, the talk of baby things like car seats, strollers, carriers, sippy cups and swings. I loved joining in on the celebration, excitement, and planning for this new precious one’s arrival.

The conversation turned to maternity leave with all the same joy and sparkle of the previous conversation. Six or eight weeks off work and then back to work and baby gets to come along and how wonderful the situation will be so mom can be out and about. 

That triggered me. I’d had the same anticipation when I was pregnant. I’d had similar expectations. But it had turned out so very differently.

Suddenly, I was struggling to participate in the conversation or even stay sitting at the table. I couldn’t rejoice with the anticipation of the soon-to-be-mom anymore. I wanted to try to warn her to be careful with her expectations or at least have a Plan B in case baby isn’t an easy baby. Because, well, you just never know.  

I couldn’t leave the table without it being abrupt, so I tried hard to keep a pleasant, neutral look on my face so I didn’t throw a wet blanket of gloom on everyone at the table and festivities. I don’t know if I succeeded, but conversation continued swirling and my mind went back in time.

I’d been so excited about my baby. I’d planned and prepared. I’d gotten everything ready. I’d been so careful about not taking any over-the-counter medications or eating food that could pose a danger. I researched natural birth. I had a birth plan. Due to our life circumstances at the time, I had an after-hospital plan, a 2-month plan and a first year plan. And of course, expectations for the rest of my newest little love’s childhood and life. 

But, things don’t always go as planned. You know that or you wouldn’t be reading this. Sometimes plans gone awry are a little hiccup, no big deal. Sometimes, life will never ever be the same.

During the first few years I fought it with everything in me. In the last few years I have come to accept it – whatever “it” looks like – progress or regressions. The unknowns of the future. I grieved the child and life I expected but will never have and came to accept our new normal. Not to say that daily life is easy. But I’ve accepted our reality and am content in my life.

Let me be clear – I delight in my child and who he is, but accepting all the challenges that came with him, the struggle that he (and we) live with daily, and the total upending to our entire life expectations is what was difficult.

Then there was game night and an excited new mom-to-be. As I sat down to write this blog post and traveled back to where she is now, I found tears rolling down my cheeks and sobs escaping my throat. I guess I’m still grieving the loss of that dream, of what never was and what never will be. It’s been so long since I’ve gone there and remembered that I ever had a different dream than what I’m living right now.

Chronic grief. It can be all consuming when you’re in the worst of it or can hit at any moment, unexpectedly. It’s okay. It doesn’t mean you don’t love your child with all your heart. It means that you lost something that was dear to you. Cry, sob, acknowledge it, name it - grief. Then dry those tears and go hug the child you do have and love dearly.

Written by Sarah McGuire

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

3 Things To Remember When You're Overwhelmed

I don’t know about you, but there are times when my energy levels simply dip and it feels as though my motivation and get up and go has got up and gone. There are times when everything feels too much; too much of an uphill struggle, too much of a battle, too relentless. And in those times I also fight overwhelming feelings of guilt and failure.

I shouldn’t feel this way, should I? After all I dearly love my kids, why can’t I just enjoy every minute like I feel should, why does it all get so negative?

At times I need to be reminded of these 3 basic things.

I’m not alone

Maybe we don’t talk openly about this as much as we should. But years of walking alongside other families, other caregivers like me, show me I’m not the only one that goes through this. I also pray, holding onto the promise I believe that God says he will not leave or forsake me. I look again at the many characters in the Bible stories who God was faithfully present with against all the odds. My favorite is Elijah when he wants to give up and face plants the dust. God gets it, dusts him down and tucks him in for a well needed sleep. There are also others I can talk to now who understand, who have been there and will go there again.

Finding those people, whether through an online community or a local support group has been really important. They are the ones to message or meet up with when things get tough. They will remind me I’m not alone.

Self-care is not selfish

Sleep deprivation is no joke, the physical and psychological effects are real. It is not selfish to recognize my need for rest in the middle of all the demands on my time and energy as I care for others. I need healthy energy giving food as well as my emergency chocolate supply. I need space to catch my breath just for a second every now and then.

The logistics of self-care as a caregiver are not at all easy but when I can find a moment I want to remind myself that taking that opportunity for a space, a snack or a snooze is not selfish but important. It’s part of what keeps me resilient, it is needed to stay healthy.

Look for the blessings

When things feel negative it’s all too easy to only see the difficult bits and not notice the little joys. I feel cross when I hear myself remind myself to look for the blessings but I know full well that unless I make the decision to find even just a few each day the negative spiral gains pace.

One of the ways I have found that helps me get going is to try and be more mindful as I go about the everyday. During the day asking myself what 5 things I can see, what 4 things I can hear, what 3 things I can touch, what 2 things I can do, what 1 thing I can smell. Being intentionally more aware of my interaction with the world around me often opens me up to begin seeing the little moments of beauty, joy and peace again. It grounds me and reminds me there are blessings around me and dotted in and through each day that can refresh and nurture me.

Written by Cathy Porter 

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

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

www.clearlynurturing.wordpress.com

Romance, A Divine Design

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

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

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

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

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

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

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

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

 

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

Written by Sarah McGuire, Co-Founder of Hope Anew

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

Friendship–Please Keep Inviting Us

I had a dream the other night that my best friend had a birthday party for her daughter and didn’t invite mine. I woke up grumpy and sad, and it took me about half of the morning to realize the dream was the reason for my grumpiness. Our girls were born 4 months apart and we assumed they were destined to be best friends. However, my daughter Emmaus was born with a genetic disease that has caused her to have a global delay, autism and epilepsy. So while both girls still love each other a great deal, the picture of “best friends” is not quite what we imagined.

After figuring out the root of my mood I picked up the phone and called Emily, my bestie.  I told her that it was important to me that we be invited to things like birthday parties.  That we might not always come, but that having the option was really important to me. As always, she was gracious and thanked me for letting her know, and she validated that my request was important to her as well.

A week later we got an invite to a cookie party from another dear friend of ours, Sarah.  She called me and said that “it just seemed right that myself and Emmaus come if we could.” She had run the idea past Emily and Emily shared my dream with her. On top of that she wanted to know if it would be okay to share a little about Emmaus with the other second grade moms and girls, so they could be prepared and know how to best interact and accommodate a friend like Emmaus.  To say I felt loved in those moments is a massive understatement.

Do you remember the first time the isolation set in? For me it was a lovely spring day, years earlier, with some of those same friends. We took our kids to the park.  Emmaus and I sat on a blanket, alone, while everyone else played and chatted. I remember realizing that my daughter could not sit up to swing, and she was too big for me to hold, so I could at least go socialize. I felt invisible on that blanket watching the other moms chase their kids around. Did no one realize we couldn’t do the same? Did anyone even care?

This special needs life doesn’t always lend itself to inclusion. Especially in the social arena. But what has changed since that first isolated encounter is me. I have learned to be bold and say “The park isn’t a great option for us, could we (insert activity) instead?” I have learned to host, because often my daughter feels most comfortable at home. I have learned to be brave and attempt an activity knowing full well it might be short lived. And I have learned to be okay with “missing out” because sometimes it is not worth the effort. 

My friendships have changed, some have completely dissolved, but being willing to be vulnerable and share our needs even in the arena of friendship has lead to some rich relationships for myself and my daughter.

Written by Laurisa Ballew

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

Living Out Happily Ever After

Pride and Prejudice, Anne of Green Gables, Anne of Avonlea, Maid in Manhattan, Sweet Home Alabama, Leap Year, While You Were Sleeping, How to Lose a Guy in 10 Days these some of the movies I love and could enjoy over and over again. I’m sure you noticed a theme – romance. Yes, I’m a romantic. And not the tragic romantic type either. No Romeo and Juliet or The Notebook for me. So, I’m a romantic and an idealist. I like happy endings. If the tale is brimming with sorrow or the ending tragic, I’m never watching again.

I like idealistic relationships where man meets woman, they learn what the other person is like, some of their quirks, strengths, weaknesses, fall in love and live happily ever after. Yet, this isn’t  truly a reflection of real life is it?

 Some of it can be true, especially all the way up to the happily ever after part. But, that part is the hardest. Because “ever after” encompasses years or decades and is usually when the really hard stuff happens, all the stuff of daily life like making a living, raising kids, really learning each other’s strengths and weaknesses and how to mesh yours and his together in a way that works for both of you.

 If you add a child or two with disabilities to the mix, that’s a recipe for more stress and burden on a relationship. And if both spouses aren’t committed to the better or worse part of it, it can quickly come to The End.

How do we live out “happily ever after” when the unexpected challenges of a child with additional needs are added to our marriage? It’s simple, but not easy. It goes back to what every relationship needs: attention, time, less selfishness, looking for ways to communicate love and care to your spouse.

I don’t know about you, but it has been easy for me to overlook the needs of my husband because I got so consumed with the needs of our kids, especially when our youngest was in crisis. Crisis for him lasted for years. Yet, if we neglect to care for the relationship with our spouse, it won’t survive, or at least won’t be healthy and all that it could be. At most, it might quality for “ever after”, but without the “happily.”

 If you, like me, have neglected your spouse, I’d encourage you to find some way of letting him know you appreciate and respect him for who he is and what he does.

Here’s a few ideas:

1.     You make the arrangements for a date night he’ll enjoy, whether that’s going out or staying in.

2.     Get a candy kiss (or bag of chocolate covered coffee beans) and put it on his pillow with a note that says one or two reasons you respect and love him (i.e. “I respect you for continuing to show up to face the responsibilities of this family. You’re an amazing man, husband, and father.”)

3.     Text him during the day while he’s at work just to let him know you’re thinking of him and appreciate what a hard worker he is.

4.     Slip a short love note in his underwear so when he goes to get dressed in the morning he has a nice surprise to start his day and knows he’s been thought of. It doesn’t have to be elaborate. Small sticky notes work well.

Pick one that fits your family and, even better, your husband’s love language! What ideas have you tried with success?

Written by Sarah McGuire, Co-Founder of Hope Anew

The Importance Of A 5 Minute Break

It was 12:30 in the morning and I was lying in bed, wide awake. I had managed to fall asleep for a few minutes but for some reason woke up. Sleep did not come, so I finally went downstairs, made a cup of tea, went into my home office and got to work. I knew I would likely be worthless the next day, after not sleeping, so I reasoned that I should get a jump on my goals to compensate for that.

At 4 am, I finally pulled myself away from my desk and headed to bed, while I braced myself for the official start of the day that would be coming shortly. The morning’s coffee would need to be stronger than normal.  

When I got up, I took the dogs on a little walk, drank my first cup of coffee and read the Bible. The grogginess cleared and negativity took its place. I found myself not engaging in conversation with my boys, being controlling over dumb things and over-reacting to little things.

 I was downright surly and didn’t even want to be around myself. Can you relate? It would have been easy for me to justify my attitude and actions to myself by blaming it on lack of sleep and stress over the work that needed to be done but those would have just been excuses.

At a particularly ugly point, I finally stepped back. I sat down in a chair, prayed and just breathed. As I prayed, I confessed my negativity and lack of lovingness and asked for help. I thought through my attitude and the circumstances around it.

It wasn’t a long break. In fact, I didn’t even leave the room but it made a world of difference in my perspective and how I treated those around me. It was like I had taken a refreshing shower after working outside on a hot day. I was still tired and I still had a lot of work I needed to accomplish, but this time breathed life into me for the rest of the day and I no longer felt like that surly bear who no one wanted to bump into.

Lack of sleep is pretty common for those of us who have children impacted by disability. Stressful days are often the norm as well. It can be hard to stay positive throughout the day as we interact with therapists, teachers, doctors and, most importantly, our families. It can be easy for our speech to become short and have a bite to it as opposed to filled with grace and love.

In those times, taking a step back to pray, reflect and breath can be the perfect answer. The therapist, IEP meetings, doctor and kids will still be there but this time may give you the chance that you need to refocus and refresh.

After my break, I sucked up my pride and apologized to the boys. The atmosphere in the house changed from nervousness and timidity to a place where everyone wanted to be.

What helps you to refocus when you are exhausted, overwhelmed and stressed with life?

Written by Jonathan McGuire, Co-Founder of Hope Anew

The Accidental Sleepover: How We Were Blessed By Blessing Others

One of the greatest challenges my son deals with is making relationships with his same age peers, whether typical or special needs. While he is friendly with some of the neighbor kids and a few of his friends from school, having him make “real” friends is something my wife and I are still very much working on.

We were amazed at the blessing our son received when a close friend down the street called my wife in a panic to let her know that her special needs son had an accident on their play-set in the backyard, so they had to rush him to the emergency room.  Expecting a long day and night at the hospital, the mom had asked us if we could take her other son, the typical brother, to stay with us and possibly spend the night. My wife hurriedly said, “Yes” and within several minutes came the young boy, complete with an overnight bag. We prepared for what would turn out to be our son’s first sleepover. 

Now hosting this type of a sleepover is a slightly different endeavor than those of typical kids, since our son is used to his standard routines of his favorite TV shows, iPad time, lots of eating and maybe some outside time before bed. Since our son can also not communicate verbally, it’s not always easy to figure out how he may want to interact with his friends.  

Luckily, as we inquired with the boy, we discovered that many of his favorite things were things our son enjoyed as well! One of the first things I offered him was playing games on the Nintendo Wii, which is great for my son since he enjoys a lot of the sports games that I can give him an assist with. When we suggested some other movies or shows they could watch, they were also ones our son instantly gravitated towards. And, of course, dinner time was great for bonding, as we managed to get them both to sit down for a meal.

 By the time we got to the nighttime stuff, our son went to his bed, but this time very excitedly and with a huge smile glued to his face. When my wife asked him through his iPad if he was glad his friend had come over, he confirmed with a hearty electronic “YES.”

 The next morning we all got up, had breakfast, the boys watched a little TV together and we got ready for our usual Sunday routines. Our neighbor dropped by to pick her son up to go home. Confirmation that the night was a success, came later that day when the boy let his mom know he wanted to do it again!

We then realized that our willingness to bless someone else in turn blessed us in ways we couldn’t imagine just hours earlier. Comforting others in their moment of crisis allowed our son to be comforted with a gift of friendship, and a memory of his first sleepover, accidental or not, yet totally joyful.

“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.” (2 Corinthians 1:3-4, ESV) 

Written by John Felageller  

You can follow John at https://www.facebook.com/johnsspecialneedsblog/

"Unexpected Blessings" In Review

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

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

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

- Sandra Peoples

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

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

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

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

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

Written by Sarah McGuire, Co-Founder of Hope Anew

Yes, I Am Depressed

Do you struggle with depression? I was sitting in a sterile office with my wife and kids as some stranger was analyzing my blood and this is the question he asked. My gut response was to swallow the lump that suddenly appeared in my throat and say “No. No, I don’t struggle with depression,” rather than admit the truth before my wife and boys.

Instead, I swallowed my pride and with my heart beating in my ears, admitted that I struggle with depression. Oddly, I wasn’t met with scorn or rejection and the world didn’t fall apart when I spoke the truth. My boys didn’t suddenly think less of me and, if I’m being honest, it really wasn’t a surprise to Sarah.

So why was it so hard to admit that depression was a struggle? I didn’t want to be seen as weak or dare I say, unstable. I didn’t want it to impact my relationships with those around me.

 I’ve always been pretty even keel. I don’t have an extreme visible range of emotions. I’m not known for displaying high levels of exuberance when I’m excited or for flying off the handle when I am angry and I definitely don’t talk to others about being depressed.

 Why not? Have you ever felt like you had to wear a mask in order to be perceived a certain way? You wear one mask with your friends. Another mask at your church and so on.

By admitting I struggle with depression, it felt like I was admitting that I was “less than.” Somehow in my personal life, I equated depression with not being strong enough mentally or physically. More importantly, I equated it to not being strong enough spiritually or having enough faith.

Isn’t that ridiculous? Of all the foolish notions, I don’t even apply the same standard to others when I see them struggling emotionally. In fact, it grieves my heart to hear of individuals who didn’t open up or get help when they needed it.

Sadly, I think many of us are stuck in this game of wearing a mask. Not everyone is trying to hide depression. It might be worries over a child who is struggling with a disability. It might be a marriage that is in shambles or an addiction of some type. We’re afraid of what will happen when we are real about where we are at.

Do you know what happened when I answered this man’s question? He said, “Okay, that fits. Let’s look at your adrenals.” He helped me look for an answer and came alongside me. What if I had buried the truth? My overall health would have suffered as a result.

As parents of children who are impacted by additional needs, we often neglect our own emotional, physical and spiritual health. Are there areas that you are burying? Who can you find that will allow you to safely take your mask off so you can begin to experience healing?

A Change In Perspective

I confess that one of my greatest weaknesses during the holiday season is watching the mass variety of shows, concerts and movies that celebrate all things Christmas. I especially enjoy more of the live music and performances on Christmas Eve, usually from a great church or legendary concert hall. One year I watched a new musical, which was a fresh modern take on the Dickens classic, A Christmas Carol.

Toward the end of the show, after the death of Tiny Tim, his father, Bob Cratchit, sings a song of mourning the loss of his son. But this was not a typical song lamenting the tragic loss of a child. This song, called “No Trouble At All,” was an almost lighthearted reflection on the life of Tiny Tim. In a whimsical kind of tone, the character of Cratchit speaks to all of the struggles his son faced.

As he sang over the list of ailments and the challenges that each of those brought to the family, he answered each one with a wide smile and an incredibly heartwarming saying, “No Trouble At All.”

I watched the scene with tears welling up in my eyes as I immediately substituted all of the challenges that the actor was communicating in his song for my own son’s challenges and reflected on how I felt about them.

The normal emotional responses of anxiety, frustration and anger almost instantly melted away. What I was left with was the perspective of a father looking back at his experience of his son now that he had come to the end of his life.

While my son was still alive and well, I had now stepped into the shoes of Bob Cratchit, and found my perspective was one of gratefulness and love to all of his conditions.

 I sat and let all of my experiences with my son wash over me, and with the now appropriate response: when I am upset at my son for not being able to control his body, he is no trouble at all. When I’m frustrated that he can’t be more independent and needs so much support, he is no trouble at all. When he won’t go to sleep and requires me to sit or lay in bed with him until he does, he is no trouble at all.

 Most importantly, when I am in those places of upset, frustration and sleep deprivation; my Lord reaches down from heaven and with a loving hand and a gentle voice whispers to me how much I am loved and forgiven. He shows me the grace that I so desperately need when I am not being the father that I am called to be. He cares for me in so many ways and reassures me, even in times of weakness, I am no trouble at all.

           “Relieve the troubles of my heart and free me from my anguish.” ~ Psalm 25:17, NIV

 

 Written by John Felageller

You can connect with John on his Facebook page: https://www.facebook.com/johnsspecialneedsblog/

Emmanuel, God With Us

The very name of God, Emmanuel, God with us. It leaves me astounded.

We live on this Earth with pain, brokenness, strife, and evil of every kind all around us and bombarding us in the headlines daily.  

In the midst of everything we went through with our son, who was allergic to all food except for sweet potato and on the severe end of the autism spectrum; I found myself questioning God. “God, why did you allow this?” “God, why don’t you stop evil?” “God, where are you?” “God, have you abandoned me?”  I sank into a rather dark and hopeless place.

I questioned and felt lost. I knew what the Bible said. I knew the theological answers. But, suddenly, the questions and answers were no longer hypothetical. You know the hard places too, right? Maybe you’ve had some of the same questions.

Something I forgot in my dark, hopeless space was this – Emmanuel, God with us. It is part of who God is. It is His name. It is part of His very identity.

From the very beginning after creation, when the Earth and people were still perfect, before sin entered our story, God walked and talked directly with Adam and Eve. Emmanuel, God with us.  

Our choice to sin forced a separation between God and us. Yet, He loved us too much to leave us with the consequences of our actions and forever separated from Him. So, He sent His son as a man. Emmanuel, God with us.

He had His only son pay the price of our sin in our place. Emmanuel, God with us.

He sent His Holy Spirit to inhabit His people to act as comforter and guide until His son returns to gather us to heaven. Emmanuel, God with us.

We now have the hope of eternity spent with Him. A God who loves us beyond comprehension. Enough that He came from the perfection of heaven to this sin-cursed, pain-filled, broken, evil world in order to be with us forever. Emmanuel, God with us.

It astounds me. He is the God of the entire universe and being with us is one of His greatest desires. So much so, that it is His name. This Christmas may be a happy, sad, or challenging season for you, but remember that you are not alone. You have a God who loves you and is with you. Nothing can separate you from His love.

 “And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love.  No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.” ~ Romans 8:38, 39 (NLT)

Written by Sarah McGuire, Co-Founder of Hope Anew

Not Just A Mom

I’d just walked out the door from the latest appointment with yet another doctor, I’d pleaded again for help, “My child can’t eat food without vomiting and screaming in pain for hours. Help!” I was still feeding him solid food as often as I could, always trying new things, and nursing him every two to three hours all day and all night. This appointment the doctor reprimanded me for my son’s poor weight and told me that I needed to feed him.  “Umm…did you even hear me? That’s why I’m here, because I’ve been trying that for a year now and it’s not working!” They didn’t even seem to listen to me.

This wasn’t the first doctor’s office I’d walked out of discouraged. It started with the first phone call to his pediatrician when he was three weeks old when he had begun screaming and vomiting and had continued with every new doctor we tried throughout the year. 

He was now one year old and needed solid food. But, every time he ate he would projectile vomit and scream in pain for hours, sometimes days. He was still nursing and did well with that as long as I kept dairy, soy, legumes, peanuts, oats and beef strictly out of my diet. I was down from my healthy pre-baby weight of 125lbs to 104lbs.

He’d gone from the 100th percentile on the height chart at birth to now the 50th percentile and his weight was currently hovering at the 5th percentile. Neither of us were thriving.

One of our biggest and hardest jobs as mom of a child with extra needs is being their advocate. Getting them the help they need and so often it feels like banging our head against a brick wall. I felt discounted because I’m just a mom. Yes, I have a M.A. (Master of Arts) and M.S. (Master of Science) but that didn’t seem to matter at all. Somehow, because I wasn’t a M.D. I was treated as though I couldn’t observe correctly what was happening in my own home with own child.

For me, I experienced being discounted as just a mom and not a professional the most in the medical arena. I’ve talked with other moms who’ve experienced it more in the educational sphere. It comes into play in other areas too like therapies, counseling, etc.

That was one of the last times I walked out of a doctor’s office feeling completely helpless. I stopped and pondered after that appointment. And, I observed the fact that I know my child the best of anyone on this earth. I may not have the answers or medical knowledge, but I was going to take my mom power back.

 From that day on I viewed medical professionals as people to consult with as I determined what would be the course of action in helping my son. I could not continue to wait for them to listen. I could seek knowledge, wisdom, and get input from them as well as from other alternative sources. And, I came to depend heavily on some of those other alternatives. But, I was the one responsible for and in charge of my child’s treatment. I am M.O.M. and THAT is the most important and best qualification in helping my son.

Written by Sarah McGuire, Co-Founder of Hope Anew

I'm Not Supermom...

“I don’t know how you do it.” “I could never do what you do.” “God knew just what He was doing when He gave Jordan to you. He knew you could handle it.”

I’ve heard these phrases more than once and by different people. How about you? You have heard them too, right? These phrases or ones like them are commonly heard by us special needs parents. I know they are said by good-hearted people meaning to encourage me, but that’s not how my heart responds.

When I hear, “I don’t know how you do it.” My heart responds, “Neither do I. I’m barely surviving.” When I hear, “I could never do what you do.” My heart responds, “What other option do I have? I do it because it must be done.” When I hear, “God knew just what He was doing when he gave Jordan to you. He knew you could handle it.” My heart responds, “God may have known what he was doing. But from my perspective, I’m thinking God might have been a little crazy the day he made that decision.”

Why does my heart respond so viscerally to these statements? Because they imply that I’m supermom. That I’ve got it all together. That these extra challenges in life around having a child with additional needs are not much of a challenge to me. 

What they don’t know is how much our hearts are aching. How much doubt we carry. That we don’t know what to do. Don’t know how to help our child. Don’t know what the future holds for our child or for us. They don’t see the house that hasn’t been cleaned well in, umm, I don’t know because I’m just too tired to get to that. They don’t see that I’m just surviving today, this hour, this minute. I can’t think about 5 minutes from now, tomorrow, next month or next year. And so many other areas where I drop the ball and fall short in all the normal “mom” duties. 

Last month Diane Kim gave the keynote speech at a conference where Jonathan and I were breakout speakers. In her talk she touched on this topic and stated, “We are green berets in a room of soccer moms.” I love that!  

We may drop the ball on cleaning the house or having a Pinterest-worthy birthday celebration for our kids, but we are advocating for our kiddo in meetings with therapists, educators, and doctor appointments. We are figuring out how to help them every way we can and when plan A doesn’t work, going to plan B and plan C. In fact, in order to make a trip to the grocery store, we may need to have prepared a plan A, B and C just in case. We are the child’s biggest cheerleader and strongest support, whether the child knows it or not. We know that child better than anyone else in the world. And love them deeply, unconditionally, sacrificially.

Yes, we have a different focus than most moms. I’ll never be a soccer mom. I’ll forever be a green beret with some different bullet points on my job description from the other moms.

It’s been a few years since I’ve had someone say one of these phrases to me. Life has changed since then. I don’t live in crisis mode all the time anymore. I’ve had the time to stop and reflect and wrestle with God and gain a little perspective on those years. 

Did God know what He was doing when he gave me my son with extra needs? Yes, for certain! He knew I would love that boy and do everything I could for him, but I think God knew I needed Jordan more than Jordan needed me. Did He know I could handle it? He knew I absolutely could not handle it.

That’s why He promised to be with me.

~ Written by Sarah McGuire, Co-Founder of Hope Anew

WILL MY CHILD BE ACCEPTED?

I finally watched the movie “Wonder” and I may or have may not have cried. Don’t get me wrong, the tears were manly tears. Each tear probably had its own little beard but they were tears none the less.

What was it that hit me? Was it the hard times Auggie faced? The initial lack of social acceptance? Was it the fear and trepidation that his parents dealt with when they sent him to school or the conflict they had when they were not on the same page about sending him to school? Or was it how Olivia’s (Auggie’s sister) life was impacted?

It wasn’t any of these things. Although, all these things were right on the money and in one way or another I could relate to each of them. While our struggles were different, I could relate to each of the challenges depicted and have seen them exemplified in our own family. No, the thing that got me was the acceptance.

After all the difficulties, Auggie’s classmates accepted him. They laughed at his jokes. They high fived him and gave him a standing ovation when he was given an award for being an exemplary person at the end of the school year. This is what made the tears stream down my face.

 I’ve learned to take the good days with the hard. But it breaks my heart when I sit down with my little buddy, talk with him about his goals and his top goal is to make friends. He wants to make more friends but social situations can be really hard for him.

 He wants to be accepted and you know what, I want that for him. I want the kids high fiving him. I want them laughing at his jokes. I want them to be seeking him out and to miss him if he is not there.

Do I care if he is popular or if he ever has a standing ovation from a group of peers? No, but I want him to be accepted.

 This is why I cried such manly tears in this movie, because not all of our sons and daughters will win over the hearts of their peers and be accepted for the “Wonders” that they are. We don’t have screen writers in place to tie beautiful bows on our situations and make everyone else see our children the way we do. And it hurts.

 Here’s the thing though, even in the midst of the uncertainty about his future and how he will be accepted. I have a confident hope and assurance. Even when I’m no longer around, my son has a heavenly father in whose image he was made. A father who will never leave him, forsake him or turn him away. A father who recognizes how wonderfully our children were made.

 “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these.”

~ Jesus (Mark 10:14 NIV)

 Have you seen the movie, “Wonder”?  How did it resonate with you?

Helpless...

Helpless. As I sat for hours with my screaming, writhing son, that’s how I felt – helpless. When he started screaming and projectile vomiting every time he ate at 15 days old, I had called and asked the doctor what was causing it and how to help him. I was told it was separation anxiety. Ummm…he’s only 3 weeks old and he’s not separate. At his one month appointment I asked again.

A few more doctors, a few more months, a year, the same questions. No more answers, help or direction.

 It’s likely you can relate – symptoms with no answers. A diagnosis with no cure. A treatment plan or educational plan with no prognosis. A future that is murky and unclear except that it will likely be different than what you had dreamed and harder than you had ever imagined.

As my son screamed and writhed, I couldn’t take his pain away. I couldn’t make it stop. He was too young to talk or to understand my words. But, I could be with him in it. I could provide security and comfort just by my touch, love, and presence. He might still be in pain, but at least he knew he wasn’t alone. Neither are you.

Your life circumstances may be out of your control. You may feel overwhelmed and helpless, maybe hopeless too. But if you are God’s child, he is there with you and he is for you.

A verse that became a favorite of mine during these years of life and remains a favorite to this day is Zephaniah 3:17.

“For the Lord your God is living among you.
    He is a mighty savior.
He will take delight in you with gladness.
    With his love, he will calm all your fears.[a]
He will rejoice over you with joyful songs.”

Look at all the words and phrases in here that describe how he thinks of and relates us: God, mighty savior, delight, gladness, love, calming, rejoice, joy. Whenever I think on this verse, I picture God, my Father, lovingly cradling me in his arms (as I did for my dear son), calming my fears and singing to me with joy and gladness, delighting in me, his beloved child.

 I might still be helpless to stop my son’s pain, but I didn’t feel so alone and hopeless. Meditating on this verse helped me to remember that I am loved and delighted in by the creator of the universe and you are too.

Written by Sarah McGuire, Co-Founder of Hope Anew

"Aching Joy: Following God through the Land of Unanswered Prayer" in Review

“Fine. That’s what we call the ground where we think we ought to be standing. The ground of Fine. We imagine ourselves there, and we keep walking. Eyes up. Smile on. Don’t look down. Don’t admit your open wounds, your hanging doubts, your naked needs.”

– Jason Hague, Aching Joy

I met Jason at a conference he, his wife, Jonathan and I were all speaking at. We immediately connected, and they instantly felt like long lost friends. When his book came out, I was privileged and excited to read it, even with the stacks of books I have waiting for me to dig into, it went to the top of the pile. His book is just like he is – real and relational.  

One of the reasons Jonathan and I connected with Jason so instantly was the fact that he is real. There’s no sugar-coated fake smile. There’s no hiding the hard, pretending it doesn’t exist or impact life. But there’s also joy and laughter in the connecting. Aching Joy is a true reflection of the author and it is a rare treasure.

Aching Joy reads like beautifully written prose poetry but has all the realness and rawness of opening a journal and reading the innermost struggles and questions of the spiritual and emotional journey of person going through the land of unanswered prayers in heartbreaking circumstances. And when those circumstances match your journey and circumstances, a child with special needs, whew. It goes straight to the heart. 

Jason covers it all: the struggles, the questions, the doubts, the fear, the disillusionment, the wrestling with God, the learning new things about God, new insights, and new perspectives.

Aching Joy opens a window and lets the reader peer into the transformation as it takes place in one man’s soul as he traverses the land of unanswered prayer. Yet, that man’s journey is not a rare or an entirely unique one, as I find it matches my own and many other parents walking this path.

Jason beautifully lays out the struggles and tug of war in all its messiness that happens in a person’s heart and head as they seek to understand the “Why?” and the “Where are you, God?” with the truth they know in the Bible and the reality of their life circumstance.

The lovely thing about Aching Joy is that while Jason invites you to journey with him, it is not the aimless wanderings and ponderings like would be found in a journal.  He shares the Biblical truths he discovered and the God he has come to know in a new way in the process of the journey that has led to hope, healing, and joy. Although, it is definitely still an aching joy and will remain so, as it will for all of us, until the day of the final and complete redemption of all things.

“The road ahead is dangerous but not barren. There is sustenance here, because Christ himself is here, and he goes before us. He walked this path already, this Man of Sorrows, and endured all that we must endure and more…He does not hover above us on the winds of false expectations. Rather, he stands next to us with his own humble scars, beckoning us forward.”

– Jason Hague, Aching Joy

Written by Sarah McGuire, Co-Founder of Hope Anew

When I Feel Alone & Forgotten

Do you have any verses in the Bible that are extra meaningful to you and that encourage you when you feel alone, overwhelmed and like no one gets it? 

A couple of verses I love are Isaiah 40:26 & 27 which say, “Look up into the heavens. Who created all the stars? He brings them out like an army one after another, calling each by its name. Because of his great power and incomparable strength, not a single one is missing. O Jacob, how can you say the LORD does not see your troubles? O Israel, how can you say God ignores your rights?”

I have lived out in the country most of my life. I love being in nature and outdoors. Throughout my life I’ve been able hike and backpack in a few different mountain ranges. At my current stage of life and where we live, a walk around the pond on our property or a short hike at the local state park still lets me enjoy nature frequently.

Several weeks ago, my husband and I were out for a walk at night. The air was so fresh and clean and prompted me to take big refreshing breaths filling my lungs to capacity and releasing it all. We stopped, looking up at the stars. They were so bright and gorgeous and twinkling. The sky was full of them. And we noticed a big, bright orange one that I had never noticed before. A quick check on a phone app quickly told us it was Mars. We stood there and marveled at it, then went and got the boys out of bed so they could see Mars too. They laid down in the driveway and we soon discovered we were in the midst of a meteor shower and shooting stars were regularly darting across the sky. I laid down on the driveway with them and marveled at it all. 

That brings me back to Isaiah 40:26, “Who created all the stars?...He brings them out…one after another, calling each by its name…not a single one is missing.” When I feel alone and forgotten, I find that it’s important for me to reflect on verses like this one. Verses that remind me who God is, “Because of his great power and incomparable strength, not a single one is missing.” I may feel alone and forgotten. But that’s not true. This God is MY God. I’m his beloved child. He created all of these stars and planets and meteors. He knows each and every star by name and brings each one out every night. How much more does he know MY name? He even knows the number of hairs on my head. He sees and knows my joy and my pain. If you doubt it, check out verse 27. And then there’s the end of verse 28, “No one can measure the depths of his understanding.” Not only does he see and know, he understands fully, completely, beyond measure. And, if he is your God, the same is true for you. You’re not alone or forgotten or overlooked. He sees you. He knows your joy and pain and he understands.

Written by Sarah McGuire, Co-Founder of Hope Anew

Focusing On The Next Minute

“One foot in front of the other. That’s all just one more step. One foot in front of the other. You can do it. Just one more step. One foot in front of the other.” This was the mantra I would chant to myself as I trained as a high school cross country runner and felt the fatigue through my whole body, the cramp in my side, the weariness of my legs.

“One more minute. Just get through the next minute. You can do it. Hang in there, one more minute. You can make it through one more minute.” This was the mantra I would chant in my head thirteen years later when my one year old son was in so much pain he would scream and writhe in agony, holding his hands up to me in a plea to be held, tears streaming down his reddened face.  Sitting in a rocking chair, I’d pick him up and cuddle him on my lap where he would curl into a ball and cease his writhing (but not screaming) for a couple of seconds before he started squirming again and wriggled his way down between my legs to the floor where he would continue screaming and writhing in agony. After a couple of seconds on the floor, he would again hold his hands up in a plea to be held. Repeat and repeat most of the day and night.

It seemed never ending. It felt like I was accomplishing nothing and for my task-oriented self, that was really frustrating. I felt maddeningly helpless. My heart was shredded seeing my beloved son in so much agony and not being able to stop it for him. I felt like I just couldn’t do it anymore and we were never going to make it through the day (or night, whichever it was). I couldn’t think about the future, the next month or week, the next day, the next hour, the next ten minutes. No, just the next minute. I just had to make it through one more minute. That I could grapple with.

Does life ever seem completely overwhelming to you? Like you just can’t cope? That it is all just too much? That you can’t carry on? You can borrow my mantra if you would like and just focus on getting through the next minute. In that minute, you can also think of one of my favorite verses, and maybe it will become a favorite of yours too:

Isaiah 41:10, 13 “Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand…For I hold you by your right hand – I, the LORD your God. And I say to you, ‘Don’t be afraid. I am here to help you’.” 

Doesn’t it feel great to know that The Lord of Heaven’s Armies, the creator of the universe, the one who is all-mighty is holding your hand and promising to help and strengthen you? We do have to ask Him though. If we try to do it all on our own, he’ll let us try. So invite Him. Ask for his help and strength and just focus on the next minute.

Written by Sarah McGuire Co-Founder of Hope Anew, Mom of two boys

Who Is Your Tribe?

It was 2012, South Sudan (a country in Africa) was only a year old at that point. I was in a refugee camp on the border of South Sudan and Sudan. Refuges were flooding into the camp daily by the thousands, as tanks were attacking only 8 km away.

 I met Beauty as I was helping lead a trauma healing program for the refugees. Beauty came to our workshop so she could be trained to help her family and tribe deal with their pain, sorrow and loss. Beauty was in so much emotional pain. It was not uncommon to find her staring off in the distance, no emotions showing and even slightly turned away from the group as she wrapped herself in her cloak, as if to hide from the rest of the world.

 In the afternoon, our group would end and each participant would return to where they were staying in the refugee camp and at night, you might be surprised by what you would find. You would find Beauty with those members of her tribe and family that made it to the refugee camp. You would no longer see a stoic Beauty with flat emotions. Instead, you would be greeted by the sight of Beauty dancing and singing to the beat of the drums with the other survivors in her tribe.

This dancing and singing could be heard on a nightly basis and was not restricted to Beauty and her tribe. As I lay there in my tent at night, the sounds of drums beating and people singing could be heard rising from all around the camp.

As a parent of a child with special needs, there have been many days where I felt like I was in survival mode. There have been many days where I didn’t have the strength or energy to deal with the emotions that I was experiencing. There have been days where I wish I could wrap myself up in a cloak and turn away from it all. Using it as a protective wall that I could hide beyond and not have to face the reality of what it meant to be the father of a son with special needs. The pain he was in constantly. The impact that caring for him was having on my wife. The extra pressures that we had of not being able to pay for needed treatments.

Can you relate to this?

Let me ask you, who is your tribe? Who is your community? Who are those people that you can let your cloak down with and be real with?

 When we are grieving, we can’t bury the pain but we also can’t let our pain define us. When we are under stress beyond what we can bear and think that we will collapse if we get one more piece of bad news, we need that tribe. We  need that community that “get’s it,” that community who already knows our pain because they have been through it. That community that we can be with, without always diving into the drudgeries of the day and know without saying anything that they understand. That group of people that you can be real with, laugh with and even dance with to the beat of a drum.