Got Hope?

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

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

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

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

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

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

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

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

So let me ask you. “Got Hope?”

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

Written by Jonathan McGuire

Jonathan McGuire  is  the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.

Hope Anew has launched the Hope Anew Online Community and would love to have you be a part of it! You can learn more at www.HopeAnew.com.  Due to COVID-19, Hope Anew is waiving all membership fees for the community!

Embracing God’s Love for Special Needs Parents

This special needs parenting journey is challenging. Sometimes it feels like we’re drowning in appointments and anxiety, and other times it all seems manageable, but either way, something will happen to throw a monkey-wrench in everything. Something hard, as if we weren’t experiencing enough hard as it is. A rough day. Another diagnosis. A financial hardship. A sickness or hospitalization. Or our current situation of the spread of coronavirus and our social distancing and losing the village that we relied on--our churches, schools, children’s therapists and specialists, etc. It is easy in times like that to feel overwhelmed and to ask God a plethora of questions.

A few years ago, I was having an exceptionally hard day and I felt myself getting angry at God. “Why God? Why is everything so hard? Where are you? You’re supposed to be a good God and I don’t see you doing any good in this situation.”

I raged silently at a God who felt just as silent.

I knew I desperately needed some time to be alone with God, but my boys needed dinner and attention. And then, bedtime rolled around.

After my older son, about four or five years old at the time, was all snuggled in bed and we had read his book before bed, we prayed together. Sometimes I did the praying, sometimes we did prayers fill in the blank style as he could only say one or two-word phrases. I would say “thank you God for ____” and then he’d respond with something he was grateful for. Usually it was Mama or Dada or Baby (his little brother) or Birds (what he called his ipad because he loved to play Angry Birds on it) and so I decided to go with the fill-in-the-blank style prayer.

Me: “Thank you God for ____.”

“Eesus!” he said with a grin.

I choked back tears as I told him, “Yes, thank you God for Jesus.” I’ve never had any indication that he understood anything relating to God, Jesus or Bible stories, except for identifying “baby Eesus” at Christmas time. I’ve never prayed before using the words “Thank you God for Jesus.” It was his own spontaneous thought and it filled my heart with hope and joy.

We finished our prayers and I kissed that precious little guy goodnight and as I left his room it hit me: God had answered my angry prayers through the mouth of a child who would need years of speech therapy to be able to talk like his peers. I had demanded God tell me where He was and why it felt like He wasn’t caring for us. And He gently reminded me that He loved me and my children so much, He gave us Jesus.

“For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.” John 3:16 NIV

Oh, how amazing, how incredible is that?

The more I thought about God giving us Jesus, I realized that the Creator of our universe can relate to our special needs parenting journey in three unique ways that can encourage us:

God treasured His child, even before His child did a single thing.

“After his baptism, Jesus came up out of the water and the heavens were opened and he saw the Spirit of God descending like a dove and settling on him. And a voice from heaven said, This is my dearly loved Son, who brings me great joy.” (Matthew 3:16-17 NLT).

Jesus hadn’t yet done a single miracle or shared a parable and yet God was proud of Him. He called Jesus His beloved Son. He found great joy in Him.

And as parents, we do the same thing. We love them the moment we first meet them, and even though they need us to do everything for them, even though they cannot do a single thing for us in return, we love them. No matter how much care they need in their lifetime, we will still love and treasure and advocate for our child. They don’t have to do anything to earn our love, we just love them with all of our beings and are willing to do anything to help and protect our children.

God watched His child be rejected, struggle, and suffer.

God knows what it’s like to see your child suffer and struggle. He watched people not understand His son, watched them mock and test His son. He witnessed His child get beaten and whipped, carry a heavy wooden cross, and then have nails hammered through His wrists and ankles pinning Him to that cross. His son suffered for hours, and I’m sure God longed to take His son off of that cross, to hold Him tight in His arms, and take His son far away from the cross. Oh, yes thank you God for Jesus!

He knows how much we love our children, and the greatest thing of all is that He loves our children even more than we do.

He joins in our heartbreak when we watch our children experience pain or go through medical procedures. He grieves with us when we watch our children struggle to do things that come so effortlessly to other children. He understands our longing to change the circumstances for our children. He understands our pain when we see our children not be understood by others or mocked and excluded by others. 

God had a greater plan, and it was for our good.

But God had a plan. He knew there was a glorious purpose in His dearly beloved son’s struggles and suffering. I’m sure that didn’t make the pain and helplessness go away as His child hung on a cross. His love for His son was as fierce as ever, but His love for you and me and for our children and all of humanity was steadfast and unwavering. Yes, thank you God for Jesus!

Sometimes we have a plan for our children they cannot see. They cannot see the purpose in a medical test or a procedure or the therapies they go to, but we know the purpose for it. They don’t always see us advocating for them with schools and insurance companies and our churches, but we advocate because we have a plan and goals in mind to help our children be included and get the supports and services they need.

We may not see all the details of God’s plan and purpose on this side of eternity. We will see glimpses of it here and there, but it is in trusting that God has a plan that will help bring hope, purpose, and meaning to this special needs parenting journey.

“God showed how much he loved us by sending his one and only Son into the world so that we might have eternal life through him.” 1 John 4:9  NLT

Yes, my son was definitely onto something. Thank you God for Jesus!

May we be able to grasp God’s unstoppable, never-ending love for each of us this Holy Week and always. 

Bio: Jenn Soehnlin is a middle school English teacher and mother to two boys who are precious blessings and who both have special needs. She is the author of Embracing This Special Life: Learning to Flourish as a Mother of a Child with Special Needs.

Jenn enjoys blogging about faith, praying Scripture, and special needs parenting at www.embracing.life. You can join her Facebook group for special needs mothers Embracing This Special Life for online support, community, and encouragement. 

Answered Prayers For Healing

I prayed that God would heal my son’s food allergies and autism. I prayed that He would lead me to the right research, interventions, and answers to bring healing to my son’s body that would heal his allergies and autism.

I prayed that God would heal my chronic illness involving extreme fatigue, brain fog and insomnia. I prayed that God would give me enough energy to take care of my family and even minister to others too.

I prayed that I would know God more, who He really is and not just knowing about Him from church and Bible school. I prayed for spiritual healing, salvation yes, I resolved that long ago. But beyond salvation, my desires and motivations had (and still have) a long way to go in mirroring His.

He answered my prayers for healing my son and spiritual healing with a yes and He is in the process of answering my prayer for healing my chronic illness with a yes, but none of them were how I expected or how I would have chosen for Him to do it.

My son’s healing came through extreme lifestyle changes that revolutionized most aspects of our family’s life. It was not easy, took a lot of time, commitment money, research, and sacrifices.

My chronic illness, of 10 plus years, is at the beginning of the process (it’s been 3 weeks), but the differences are significant already. It is not easy, requires our family to relocate, and involves huge sacrifices on the part of all of each family member and extended family in order to make it happen.

My spiritual healing isn’t easy either. It was initiated with my Savior suffering and dying a horrible death and taking my sins on Him to pay the price I owed. I’m sinful. God is holy. Without the pain and sacrifice of Jesus, there would be no healing for me. Ongoing as I desire to be more like Him, His answer to my prayer for that is not simply to give me a more spiritually mature perspective and faith, but to grow it in me by the challenges I face in this life as I come to Him with the problems and struggles and depend on Him as we go through them.

There was a time (years) in my life where I felt like God had abandoned me, was silent and was not answering my prayers. In reality, He was answering, but I couldn’t see it because the answer was in such a different form than I expected. At least that was the case for healing my son and my spiritual healing. For healing my chronic illness, evidently it wasn’t the right time yet. That answer is involving stripping many other beloved things and people away from my family and I, and I don’t think it would have been good for my family for that to have come much sooner. He knows the perfect timing.

God doesn’t always answer prayers with a, “Yes”, nor does He always answer right away or even soon. When He does answer with a, “Yes”, it may involve other sacrifices, work, and painful things. But no matter His answer, He is always working for our good, even when it doesn’t look or feel like it.

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!

Reframing Life

In this snippet from our September 2, 2019 Hope Anew Disability Podcast, Colleen Swindoll Thompson shares how our lives can resemble a HGTV Home Remodeling Show.

Resources

https://www.facebook.com/reframingministries/

https://reframingministries.com/

https://twitter.com/colleenswindoll

https://www.instagram.com/colleenswindoll/

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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