Father I Want To Know Thee

“Father I want to know Thee, but my coward heart fears to give up its toys. I cannot part with them without inward bleeding, and I do not try to hide from Thee the terror of the parting. I come trembling, but I do come. Please root from my heart all those things which I have cherished so long and which have become a very part of my living self, so that Thou mayest enter and dwell there without a rival. Then shall my heart have no need of the sun to shine in it, for Thyself wilt be the light of it, and there shall be no night there.” – A.W. Tozer

These are the words I wrote in the front my Bible in 2004, before heading to Africa as a missionary, a desire of mine since I was a young child. It was the sincere prayer of my heart that God be everything to me…and I thought He was. I had committed to and was joyfully living out, “God, I’m yours send me wherever you want, whenever you want me to go, and have me do whatever you plan for me” a commitment I had made in junior high.

That was before special needs entered my life. That was before two years of sleepless nights. That was before the dreams for my family and life were crushed beyond recognition or hope of repair. That was before I lost my health and before we lost our home which was such a gift and where we had built a new dream.

This week I sat in that home as we get rid of most of our things and read these words again. I’d forgotten about them in the front of that Bible, rarely used in the last many years in favor of a newer one and a different translation.

What a difference the depth of meaning these words have now nearly 16 years later. I’ve wanted God and a healthy child, God and a meaningful ministry outside my family, God and my welcoming, restorative home. None of these desires are wrong – a health child, a meaningful ministry, and lovely home.

Yet, when these things have been taken away my coward heart not only fears to give them up and bleeds at the parting (that’s called grief), but at times has felt angry at God over the rending of my wants and toys.

 There is a rending, a breaking of a dream, a shattering of something wonderful. There is brokenness. This world is cursed. It is crushed by sin. Where there is sin and brokenness, there will be pain. And I’ve learned that God weeps with me. God is a God of wholeness, creativity, beauty, love, forgiveness, holiness, and generosity. He is a God that will bring beauty out of our brokenness. When this broken world and the enemy of our soul crushes us, He desires to be our everything and for us to find our comfort and hope in Him.

Written by Sarah McGuire

Dear Exhausted, Wrung-out & Frazzled Mom

Dear Exhausted, Wrung-out & Frazzled Mom,

I see you. I see you struggling to make it through the day, your child’s melt downs, the medical appointments, and the therapies. I see the desperation in your eyes. I see the heartache as you are alongside your child in the midst of their ongoing pain.

I see that you are on the verge of collapse and the idea of having to do one more thing overwhelms you. I see the loneliness as you feel alone in this journey. I see you slump your shoulders when someone mentions self-care and the guilt you face at the idea you need to take a break and your child doesn’t get one. I see you and I get it. 

Our inclination as parents is to keep on pushing. We push until we can’t push any longer. It’s not a badge of honor but born out of what we feel is necessity. The idea of taking care of ourselves just seems like an impracticality and can increase our feelings of guilt on multiple levels.

This weekend I was asked “How do I know when I should pause to take care of myself?” If you are reading this letter, then the time is now. 

When our youngest son was a year and a half my wife, Sarah, had a physical and emotional break down. She had been pushing and pushing, only getting a minimal amount of sleep each day. It was a Sunday morning when she broke down. Sarah who was not normally a crier wept all the way through the church service and all the way home. She cried herself to sleep, slept for 22 hours, woke up, cried some more and slept for another 17 hours.

The thing is, she didn’t wake up feeling refreshed and like she could keep going. She was exhausted. Her hormones were shot and today, ten and a half years later, her health is still struggling. 

As a husband and a father, I implore you to take that time now. Don’t wait until it is too late. Your family and your child need you there for the long term. Please take that time, even if it is only five minutes a day.

Self-care doesn’t always have to be something that is grand. Just five minutes a day is a good place to start. Take time to breath. Smell your favorite scented soap as you wash your hands. Eat a piece of dark chocolate. Lay in your bed with your headphones on and listen to your favorite song. 

Self-care is not an extravagance. It is not selfish. It is necessary. Please take care of yourself before it is too late. 

What are one or two things you can do today to take care of yourself? It is that important.

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.

Help!

My friend’s baby had been sick, and since I am a nurse (who thanks to my own daughters needs owns a suction machine), I offered to swing by and suction her baby. My friend declined, but later, when I offered again she asked me to come. Once I had finished and her sweet baby was able to eat better, my friend said “I don’t know why I didn’t just say yes in the first place, she’s eating better than she has all day. I guess maybe I didn’t want to bother you or ask for help?”  

I think we can all relate to this. When did HELP become a dirty four-letter word that we aren’t supposed to use?  I was never taught to NOT ask for help, yet it has taken me a long time to get on board with the reality that I live a crazy life and I NEED help. 

Needing help often comes with some kind of shame, a fear maybe that others might think I was weak? Or maybe I believe that somehow, I got myself into “this mess” so I don’t deserve help? 

Regardless, if you are reading this blog especially as the parent of a child with special needs… YOU NEED HELP. You are absolutely worthy of help. And while our kiddos can be more challenging, exposing them to people outside of ourselves is a huge benefit to all involved. It helps our kiddos have other adults in their lives that can love them well. It helps us carry some of the burden. I know from experience that caregiver fatigue is a real thing. What a gift to the people who get to know our kiddos. It feels good to help those around us, and by saying YES to the offers of help, it builds community and relationship. Plus, our kiddos are amazing even with the hard, and the world NEEDS to know them. 

When someone asks what they can do to help me I sometimes don’t know where to start. It gets to a point in this chronic life that it feels like more work than relief teaching someone about our lives. But I promise that it can be worth it. And maybe that means I say YES when someone offers a meal, or I say YES when the neighbor asks if she can pick up my other daughter from school. When I find myself saying “I can do it” I am learning to pause and say, “Yes! I would love the help.” It might even mean me reaching out to friends and family and ASKING for help, because I have now realized I am worthy of needing help. 

I was so grateful to help my friend. I had the time to make it work, and I was truly blessed by getting to serve them.  

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. 

Why, God, Did You Fail Me?

My one-year old son had been sick since he was three weeks old: screaming, writhing, projectile vomiting every time he ate, anal fissures, bashing his head into hard surfaces, rashes, not sleeping for more than twenty minutes at a time, and more. My husband, myself, and our now three year old son had moved across the country the year before with our work as missionaries with Wycliffe Bible Translators. In our assigned location of Arlington, Texas, we had no friends, family or church connections upon our arrival and our youngest son’s health issues kept me mostly homebound.

I had grand dreams of the ministry work we would do and the global impact that we would be a part of through our ministry with Wycliffe. The reality of life was a far cry from that. I rarely left the house, couldn’t build friendships, and caring for our sons was so all-consuming taking 20-22 hours out of the 24 in a day, leaving only two to four hours for sleep. I was barely functioning, let alone reaching out to the rest of the world with the Scriptures.

As the days turned to weeks, the weeks to months and the months into a year and more, I started questioning God, His involvement in my life, His care of me and my family, His care for this world and the fight of good versus evil within it. In short, I had a crisis of faith and I learned six paradigm shifting lessons over the next several years as I worked through these and other questions. 

1. Suffering can lead to a crisis of faith, even if you are (or thought you were) fully submitted to God’s will and to serving Him.

2. Even ministry leaders will struggle in their faith and will question God. 

3. You can be faithful and obedient to God and life may not go well for you. I was serving God obediently and faithfully. Why was He failing me?  

4. God’s goodness and care doesn’t stem from our perspective or what He does or does not do for us in this life. God is God and He is good, regardless.

5. God not “fixing” a situation does not mean He doesn’t see us, has abandoned us, or isn’t good. Fixing it is just not His plan, at least not for now.

6. |\In the process of questioning and wrestling with God, we will get to know Him better – for Himself, as He truly is, not as we have been taught about Him, but Him.

My faith was shaken to its foundations and I questioned and wrestled with God for several years as I worked to rebuild it. And in the rebuilding, I found a God who loves me, even when I doubt or don’t achieve. I found a God who is bigger and more mysterious than I knew. I found a God who wants me to be more like Him and who wants to purify my heart, motives and beliefs, even though that process may cause me pain (which also pains Him) and may have caused some distance in our relationship for a time (which also pains Him). I found a God who is the definition of unfailing love. He is love and I am His, regardless of life circumstances.

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 impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.

YOU ARE INVITED

This morning I started a new devotional that was put out by Wycliffe Bible Translators. In the devotional, the author depicts a banquet scene. In this scene there is a long table, name cards at each spot. The silverware is polished and the candles are flickering.

The story goes on and you find yourself seated next to people from various countries and you have a very enjoyable conversation. Each person sharing their hopes and dreams.

This reminds me of another story in Luke 14. In this story there is also a banquet. A man prepared a great feast and sent out many invitations. When the time for the feast came, everyone declined for various reasons. The man then sent his servant out to the streets and had him invite the poor, the crippled, the blind, and the lame!

To hear this story in full, check out this video done by Hyatt Moore with Joni & Friends.

Many of you struggle with isolation and feeling like you are included. Friendships become more difficult and some may fade. Social events are harder to attend. and even going to church can be a challenge. Some of you may feel like you are a burden and that while you are invited, you are not really welcome.

The incredible thing is that Luke 14 is not just a story. It illustrates our heavenly father and a banquet that is yet to be. A grand banquet like no other, where those who know Him will gather and rejoice. This is a banquet where our children are not just invited but welcomed with loving arms and there won’t be a critical eye in the room.

In the story from the devotional written by Wycliffe Bible Translators, we are seated by people from different countries. We are rejoicing and celebrating with them.

Have you ever thought about who the first person you would want to talk to would be once you get to heaven? One father I talked with shared how the first person he wants to talk with is his son. He is looking forward to that day when his son, who is currently in his 30’s and nonverbal, can voice all those thoughts that are going through his head and they can get to know each other on whole new level. Can you relate to this?

I write this because sometimes we need a reminder that things in this world will not always be the same and someday those who know Christ as their savior will be in heaven with Him!  

Until we get to heaven, on those days you are struggling, remember that the same Father who is preparing a banquet for you in heaven is with you and your child in the day to day. He knows your pain, He knows what is going on, He loves you and wants hear from you.

“He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.”

 ~Revelation 21:4 (NLT)

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.

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.

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.

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