Parents of kids with Special Needs – YOU ARE AMAZING!

I was walking up the driveway pondering some of the parents of kids with special needs we know and marveling at the common traits they have and how exceptional they are. I think parents of kids with special needs are some of the most wonderful, amazing people I have ever met.

Here are 5 reason why:

1. They have their priorities straight. So much of America’s population, even Christian, Bible-believing, church going population is about achievement, looking good, having fun, wearing the right brand of clothing, being cool and keeping up with the Jones’. If you can’t do that or don’t care to do that, you kind of disappear from being accepted and included.

   As a group, the special needs parents I have met have learned that relationships, loving other and being there for each other in hard times matter more than anything else next to clinging to God. Yes, they love a good night at the movies and wouldn’t turn down a trip to Dollywood. After-all, Dollywood has a sensory room for when junior hits meltdown, which can make the trip a possibility.

2. They have learned to face difficulties. Challenges have become a way of life. Parents of kids with special needs are the strongest, most determined, loving, ferocious (mama bear, anyone?) group of people I’ve ever met. Daily life is difficult to say the least. Some seasons require just living through the next minute or hour, forget planning for tomorrow, next week or next year. They are masters at flexibility and changing plans as navigating around obstacles has become second nature.

3. They see value and worth where others see inability and hardship. While looking in from the outside, others see children or people who can’t walk, can’t talk, look different, are challenging, need help, take resources. Parents of kids with special needs see the most treasured people in their life who give unconditional love, bring joy, work harder than anyone to succeed at the simplest of tasks, get delight from simple things that others easily overlook, and a myriad of other qualities. Just talk to a parent of and adult child with special needs and you’ll likely hear how their child with special needs has blessed them more than they ever anticipated.

4. They never give up. Yes, they get weary – very weary. They may want to quit – for a day in order to nap and rejuvenate. They may want things to be easier, but when it doesn’t get easier, they still don’t give up. This is their child, whom they love dearly. Spouses may walk out. Parents and in-laws may criticize and belittle. Friends may desert them. But, they never quit on their child. They do what is within their power and resources to help and love that child to the best of their abilities.

5. They turn hardship into blessing for others. It may take a few years because those early years they are just barely surviving, and they may go back to survival mode here and there as their kids get older and hit different challenges. But, once they get the hang of things, they start helping other parents of kids with special needs. I’ve met a mom who started an entire company of patented weighted blankets that started because of her daughter’s special needs, and my son has benefitted from her blankets. I’ve met a mom who started a nonprofit helping others learn how to rest and rejuvenate in the midst of great pressures, duties and stresses because of her own journey as a mom of multiple kids with special needs. I’ve met many parents of kids with special needs who write and speak to encourage and equip other parents and to church ministry leaders to help them be able to reach out and help more families. I could go on and on about the incredible things parents have done to help others.

That’s my husband’s and my story too. Both of our backgrounds are in counseling. We were missionaries and he was doing trauma healing work in a refugee camp in South Sudan when he saw the correlation between the trauma and questions the refugees were struggling with and the challenges he and I had experienced as parents of a child with special needs. When he got home to the States, he shared with me and as we talked to other parents the need was obvious. We couldn’t find an organization that was addressing it, so a few years later we started Hope Anew.

Moms and dads of exceptional kiddos, we applaud you and we think you are amazing. I know most days you struggle to make it from morning to night and some of you struggle to make it through the night too. I know you are barely hanging on sometimes. I know your heart wrenches as you watch your child struggle daily with the simplest of things. I know your heart weeps when you can’t provide something that will help your child. I know your heart leaps and sings when they conquer a task they’ve worked at for years. I know it’s a tough road. But I also know you have risen to the challenge and are making all the difference in the world for your child. Thanks for being an amazing parent.

You are our heroes!

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

 Due to COVID-19, Hope Anew is waiving all membership fees for the community!

Why are you doing this God?

Why is this happening God?

The cry of the person in the midst of crisis. The demand of a parent with a special needs child: Why did this happen to my child? Why did this happen to us? To Me?

Often, perhaps too often, we are afraid we know the answer. Last month we looked at the possibility that it was our fault. In John 9 Jesus heals a man who was blind from birth. The disciples ask Jesus whose fault it was.

Jesus responds that it was no one’s fault, it was for God’s glory.

So if it’s not our fault, why would God allow this to happen? Why would God cause this to happen? Because one or the other seems to be the implication. It doesn’t really matter if you lean more in the direction of God making the suffering happen or allowing the suffering to happen, the end result is the same. Suffering is here and you are in the middle of it.

We are not alone in asking this question. The writers of the Psalms, especially David, ask why God would allow suffering. Job asks God straight out:

If I have sinned, what have I done to you,

you who see everything we do?

Why have you made me your target?

Have I become a burden to you?

Job 7:20, NIV

Lots of people offer us reasons why God might allow or even cause something so painful. All too often the reasons are more than a bit like those of Job’s friends. They sound pious, they may even contain some truth, but they make a very significant mistake. They claim to have certain knowledge of the mind of God when it comes to the very specific situation we face. Knowledge they simply can’t have.

God never answers Job’s question. He doesn’t explain. The closest Job gets to an answer is in chapters 38-40. There God demands to know if Job really has the standing to question him. God asks Job, “Do you really want to correct me? (40:2); is your sense of justice really greater than mine (40:8); do you have the power that I have, the power to save? (40:9-12); do you know the secrets of the universe (Ch. 38-39).

The bible is full of people crying out to God in their suffering. We see it in the Psalms. There is an entire book called “Lamentations”. The issue is not grief. It is not asking why. Job is not condemned for asking why. God challenges him for questioning his character.

The implication is clear: Job, you don’t have enough information to make the kind of judgment you are making. You don’t have the perspective you need to say that I have mistreated you. Because that is really what we are saying when we blame God for whatever is happening. God, this is your fault and I don’t deserve it. You are mistreating me.

Why is not the problem. It is a perfectly good and legitimate question. We need to ask why. the problem is that we cannot live there. In the midst of our suffering we are tempted to.

God generally doesn’t give us the answer to our whys. He doesn’t tell us the reason for suffering, instead the Bible tells us (repeatedly) to expect it. So the question we really need to be asking ourselves is “can I trust God even when I don’t understand?” If we really believe the God is who He says He is in the Bible, then as hard as it is in the moment, we know the answer is yes. From Genesis to Revelation God is the God of good things, the God who creates a good universe (Genesis 1), the God who is light not darkness (1 Jn 1:5), who comes to save His people over and over again, especially and finally in Jesus, the God who will one day set all things to right (revelation 21-22).

This does not make the road easy. It does not erase the suffering. But it does offer hope.

The hope that while we do not always understand or even see the way forward, we can trust that God has our best in mind and as the apostle Paul says to the church in Philippi:

Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? . . . No, in all these things we are more than conquerors through him who loved us.

Rom. 8:35,37 NIV

Written by Kevin O’Brien

Kevin O’Brien is a husband, father, ordained minister, writer and volunteer theologian. He holds a Master of Divinity and Master of Theology from Liberty Baptist Theological Seminary where he won the Th.M. award in 1997. He has also done graduate work at the Institute for Christian Studies in Toronto.  Kevin worked as a brand manager on the Bible team at Tyndale House Publishers. During his time at Tyndale he has helped to develop several Bibles and has written articles which have appeared in The Way, the iShine Bible, and the Illustrated Study Bible. He also wrote a series of devotionals for WAYFM’s World’s Biggest Small Group.

Most recently, Kevin wrote an Advent devotional eBook. You can find it here. 

Kevin lives in the far western suburbs of Chicago with his wife, three children, a dog, and a cat. He would prefer to spend his time reading, writing, woodworking and watching the Chicago Blackhawks.

Safeguarding Your Marriage

In the early years our oldest daughter didn’t sleep. She would be up for hours and hours at a time in the middle of the night. Although I was the one who was mostly home during the week it truly was too much awake-ness for too long of an amount of time for one person to handle it all. So my husband willingly took his fair share of night shifts. Turns out lack of sleep is super hard on relationships. I’m sure if you have a child that doesn’t sleep well you are very aware of this fact. Lack of sleep compounded with the stress of raising a child with any kind of special need calls for strong relationship skills. While we didn’t do everything right and there were often harsh things said and forgiveness needed I do think we had a few things in place that served our family and our relationship really well.

1. Pre-forgiven.

   It didn’t take long for us to figure out the middle of the night weren’t our shiniest moments. So when frustration (and fatigue) got the best of us we chose to pre-forgive each other. My husband is very reasonable, he is kind and generous, and would almost always do anything to make my life better. Also, he has said some unkind things to me at 3am after getting no sleep. So the next day when one of us would apologize the other would respond with “pre-forgiven”. Meaning, “Hey, I know you, and 3am aren’t our best relational moments, so let’s acknowledge we are doing our best and move on” no big makeup conversation needed.

2. Time off.

   From the very beginning my husband and I each had time to rest every week. Rest is vital for us. In fact if we look at the creation story Man rested on his very first day of existence. And then worked from his rest. So we made it a priority very early on to have 4ish hours a week to rest and recharge.  This can be a challenge if you have a child that is very connected to one parent. But let me give you a bit of truth. YOU HAVE TO REST. And your spouse and your child WILL be okay if you step away for a few hours. It might be rough for both of them. But they need a parent who isn’t at their wits end. So it is vital to take time away and reset.

3. Time together.

   Once a week(ish) we would find a bit of time to be together. Sometimes that meant a babysitter and a real date. Sometimes that meant unplugging from technology and playing a game or watching a movie during nap time or bed time. But it was something we valued and were extremely protective of.  It is easy to forget that you like your spouse when fun feels rare and there is constant stress to manage.  I even remember a coffee date at the hospital coffee cart during our daughters annual MRI.

Safeguarding your relationship while having a child with medical or special needs is so important. And done with intentionality.

“A perfect marriage is just two imperfect people who refuse to give up on each other”- unknown.

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. 

To The Mom Who Feels Like A Failure Part 3

Do you ever get caught up in feeling like a failure as a Mom? I do. In my life, there are four thought patterns that most commonly lead to me feeling this way. Last week we looked at the first two of these thought patterns and how to reframe them. You can find that article here. This week we are going to look at the final two and how to reframe those.

3.     I’m failing my husband and other kids.

This belief often comes because you can’t be the wife and mom you would like for your husband and other kids.

God knew your limitations when He allowed this child with special needs into your family. You are responsible to do your best to love and care for your whole family. However, when you aren’t enough and can’t do enough. Let go of the guilt and entrust that God has allowed these circumstances in your life as well as your husband’s and other kids’ lives and He can use it for good in their lives. It’s not an accident that your other kids are a sibling to a child with special needs. God has a purpose. Do what you can to love your other kids well, but when you can’t do all you wish you could do, pray and leave the rest in God’s hands. 

4.      I’m a failure as a child of God.

I grew up in a fairly legalistic church and went to a legalistic Bible college (2 actually), where having daily devotions (a time of undistracted reading the Bible and praying) was tantamount to being a good Christian. And to skip that, well, you simply weren’t a good Christian and couldn’t grow in your faith. Don’t get me wrong, the church and schools were wonderful and had solid, Bible-based teaching for which I’m SO grateful! However, there was an underlying message: you check these boxes (ideally, daily) and you’re a good Christian. Don’t, and you’re not. And being the good, perfectionistic, rule-follower that I was, I was okay with that. Until I wasn’t. Until life made it impossible to check those boxes. 

I knew that being a Christian was a relationship with God. I knew that His salvation and forgiveness from the punishment for my sins was a free gift, given by grace and not based on anything I did or could do. By dying on the cross, Jesus took my punishment for me. All I had to do was accept that and I was free and clear.

But, life with a child with special needs happened, and with it, caregiving 24 hours/day. No time for Bible study, reading, or devotions. The guilt rolled in thick and heavy. It was crippling. That isn’t God’s way – grace, a free gift. That’s man’s way – earn it, be good enough.

What other relationship do we apply that standard to? Read an email from and talk to (husband, mom, dad, sibling, friend) for 20-30 minutes a day, check, we automatically have a strong relationship. Think of all those other relationships. Who, besides a child, doesn’t understand that it’s not always possible to connect for a deep heart-to-heart every day let alone for a predetermined amount of time. Who do you not have interactions with in passing or brief texts that add to and help build the relationship?

There’s not a right or wrong method to do relationship with God, but I’ve transitioned more to a conversational, in-the-dailies, type of interaction with God as my mainstay. A sentence prayer here and there, a quick plea for help, a word of admiration at His creation of beauty in a sunset or bird song, a verse or chapter to think on through the day or week, a few minutes of intentionally turning over my challenges and cares to Him and giving thanks as I fall asleep. And, occasionally, we get a date were I actually get that sit down, uninterrupted time to read my Bible, reflect, mediate, and have that heart-to-heart talk. Yes, the more often I get those times, the more I get to know Him, love Him, see His heart, and share mine with Him. But not getting those times many days doesn’t mean I’m failing Him.

 Look at Isaiah 43:1-4 (NLT), “Do not be afraid, for I have ransomed you. I have called you by name; you are mine. When you go through deep water, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you. For I am the LORD your God…because you are precious to me. You are honored, and I love you. Do not be afraid, for I am with you.”

I love how it states over and over how, when we’ve trusted Him as our God, He is there for us and loves us unconditionally.

So, what thought patterns do you struggle with that lead you in the negative spiral of thinking you are a failure and feelings of guilt? How can you reframe those with God’s word?

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.

How Is Your Foundation?

Have you heard the parable about the house built on rock verses the house built on sand? It is from Matthew and is super short and sweet. The gist of it is that if you don’t have a strong foundation, you will not weather the storm.  I think a storm is a great metaphor for living this special needs life. The swells come and can cause some significant damage if we aren’t prepared. 

I think one of the biggest shifts for me as the parent of a child with special needs was becoming aware of when I begin to wilt. It happens over time then one day I wake up and think “HOW DID I GET HERE?”

It is the slow crumble, the neglect of ourselves that leads to a house that has crashed to the ground.   Because when your child isn’t well, isn’t sleeping, is self-harming, or when you have been denied AGAIN for resources you need, it is easy to neglect ourselves and be in the same state as the sandy house if we don’t have a good foundation.

The problem isn’t that we are weary, from time to time. The problem is that we don’t pay attention until it is too late and our foundations are weak and then we fall apart.

 Of course we can and should spiritually prepare. However, I also believe there are very practical, things we can do to have a strong foundation as well.

1.     You have to prioritize yourself. Oh my word! Did I really just write that out?! Yes. You did in fact read that right. YOU MUST PRIORITIZE YOURSELF. You are not a hero for putting everyone’s needs before your own. You, my friend, are human too. And if you are going to take extraordinary care of your child you must first take extraordinary care of yourself. 

 2.     You need to attend to your own health. Both preventatively and when there are issues. Go for your check-up. Establish a relationship with a primary care doctor for you. Go to the dentist. I know, you don’t have time. No one does. But do it anyway. Appointments will get canceled because of your crazy life. RESCHEDULE THEM. I also am a big fan of working out and eating things other than the crust of my children’s sandwiches. But let’s not get crazy. If you are starting from scratch maybe just start with scheduling those appointments? We wouldn’t dream of neglecting our child’s health the way we often neglect our own.

3.     Figure out what brings you to life again and do it. Do you love art? Do you like working out? Do you enjoy wandering the aisles of target alone with no agenda? What is it that recharges you? This is where the trendy topic of self-care comes in. But this isn’t about spending money on expensive luxury things. It is about finding out what recharges you and gives you life. Then make space to do that, regularly.  

4.     Get some help. Build your team. It truly takes a lot of people to help support one individual with special needs. And it is a constant game of finding people to help, that you also trust. Maybe grandparents, a spouse, helper or PCA. Maybe it is a friend or the para from school. You have to have a support team that will not only remind you that you are looking a bit wilted, but that will step in and help you prioritize yourself.  No one will care for your child as well as you do. And that is Okay. Because you need a break sometimes, which is also valid and important.

So what is your foundation looking like? Did you weather the last storm with just a bit of hail damage? Or was it more significant? I would encourage you to look objectively at this and make a plan if you are looking a bit shaky.

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. 

When Life Hands You Lemons

Years ago, my husband and I had felt God call us to move to a new state, and we left behind friends and family and stepped forward in obedience. But we struggled to find a new home church where we felt we could fit in. And our young sons, ages one and three at the time, were receiving diagnosis after diagnosis. My life began to revolve around their therapies, doctor’s offices, fighting with insurance, and researching online how to help my boys. Anxiety and depression took turns settling into my life and making themselves cozy. 

I thought of the quote, “When life hands you lemons, make lemonade.” I held on to my growing pile of lemons and prayed for some mighty act of God to miraculously turn them into lemonade. He didn’t. 

God felt far away and no longer like the good God I had loved and served for the majority of my life and I experienced a crisis of faith that scared me. 

Releasing the Lemons

In desperation I turned to scripture and stumbled upon a verse in which we are commanded to “Let go of all bitterness, rage and anger….” (Ephesians 4:31) and I realized I was holding on to a lot of negative things in my life. I had become bitter and angry at God because He wasn’t being the God I expected Him to be and I wasn’t living the life I had always expected to live. I had to surrender all those lemons of expectations and bitterness and doubts and struggles to God. I had to be open to what He wanted to do in my life.

I started thinking about all the heroes of faith in the Bible. No where do we see our Bible heroes getting everything they wanted and desired. They all go through a lot of struggles, sometimes decades of trials, before God’s plan comes to beautiful fruition. Joseph, Abraham and Sarah, Moses, Job, Ruth and Naomi, David, Jesus, the disciples, Paul, and many others had to go through their share of lemons and hard circumstances.

But they became heroes of the Bible because they didn’t allow those lemons to paralyze them like I had. They didn’t cling to rotting lemons. No, they decided to focus on God and God was able to turn those lemons into something good. 

A Season For Lemonade

In Ecclesiastes 3 we are told there are different seasons in life. Seasons of grief and mourning and lemons. And seasons of joy and dancing and sweetness. 

It’s ok to go through seasons of hard times and grief and lemons. But eventually, we have to let those lemons go. We’re not meant to carry them forever.

As I learned to release the lemons I’d been holding, I began to see all the sweet things in my life. I had so many things to be thankful for. Precious children and a loving husband. A new strength and a new purpose that came through my special needs parenting trials. And so much more.

What lemons are you holding on to? Seek God and what He has to teach you with your lemons. And get ready to sip on some sweet lemonade.

Written by Jenn Soehnlin

Jenn Soehnlin is a mother to two young 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 and special needs parenting at www.embracing.life. You can also find her onFacebook, Twitter, andInstagram.

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