Welcome to “Take Heart” where our goal is to give you hope, and offer insight and encouragement so you can flourish in your journey as a special needs mom. Each week, Amy, Carrie, and Sara will explore a theme and share an inspiring story, practical tip, or an encouraging blessing using our combined experience of over thirty years of parenting children with special needs. Thank you for joining us today.
Welcome, thank you for coming today to Take Heart. I’m Sara Clime and this month we are talking about HOPE. Christmas - the season of perpetual hope. The time of year when hope seems a little easier to come by and people just seem to be a bit nicer. It’s the time when hope is not only accepted, it’s expected, hope for ourselves, hope for our family & friends, hope for the community, and hope for humanity. Maybe your hope this season is for the state of the world, or maybe it’s as simple as surviving with your sanity until the 26th, maybe it’s as simple as just searching for hope.
But what is hope? Hope is a positive feeling based on the expectation that something will be better in the future. It’s similar to an optimistic point of view, but hope has an underlying confidence that circumstances will improve. So it makes sense that when something bad happens in life, we feel that hope is harder to come by or we even lose hope. When my son was diagnosed with Duchenne muscular dystrophy, the phrase “to lose all hope” made sense on a fundamental level than it ever had before. It didn’t matter what holiday it was, hope seemed to be hiding. I just couldn’t find it.
For months after we received the diagnosis, I went scouring the internet - all the social media sites, internet, online support groups, clinical trial resources, hospital websites, anything. I went looking for just a glimmer of hope, and I found zilch, nada, nothing. Well, nothing that was the kind of hope I was looking for at least. I was looking for hope that A CURE HAS BEEN FOUND. Heck, I would have taken A CURE IS CLOSE or even THERE’S A 1% CHANCE OF SURVIVAL IF YOU DO ‘THIS’ OR USE ‘THAT’ DRUG. I didn’t find that kind of hope though. What I found were other hurting moms and dads. I found panic. I found resignation. Most of the posts were full of pain, fear and confusion. Sure, there were some happy posts and parents who were making life work.
But I remember reading this one post that would change the way I looked at hope forever. A mom commented on someone else’s post about clinical trials, simple enough. She said something to the effect that “Clinical trials are a waste of time. There is no hope for our children. The best thing we can do is to not spend our valuable time, money, and resources dragging our kids all over the country to these trials only for them to be poked and prodded. It will all have the same outcome. Death. So spend quality time with your children now.”
In the span of about one minute, I went through all the emotions. I was shocked. I was indignant that she would dare squash hope. I was disheartened that somebody may just accept what she had to say as truth. I was scared she had a point. I felt confusion, shame and judgement for even daring to hope. And…I was so unbelievably sad for her. She lost a child. I remember putting my head down and just bawling. I cried for my son. I cried for his brother. I cried for my husband, myself, my marriage, our future, and I cried for that mom. I still think of her. I don’t know her name, nor would I even be able to pick her profile picture out of a lineup to be honest. But I pray for her often.
She had lost all hope. She had lost her son.
Even as devastated as I was, knowing that my son would most likely have to face exactly what her son did, I refused to give up. No, I wasn’t finding hope through any of the websites or support groups I was working through. But as I was scouring the internet and trying to latch onto any hope I could find, I realized why I wasn’t finding substantial and lasting hope. I wasn’t searching for the right hope. I wasn’t grasping for the hope only God can provide.
I don’t know about you, but I was brought up in the church. I’ve heard all the churchy words and phrases so eloquently used in sermons, Sunday School classes, in the hallways, and yes even scripture. But it isn’t until something monumental happens to me that I really “feel” the meaning of those words. This moment was a great example of that. It was at the moment of realizing that I was grasping at the wrong hope, that the Apostle Peter really made sense to me in I Peter 1:3, Peter says “Blessed be the God and Father of our Lord Jesus Christ. Because of his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead.”
Living. Hope.
The hope God provides is eternal and it never diminishes, it never wastes away, and it never dies. We can rest in God’s promise of a life of joy and peace with Him, forever. Hope lies in my son’s present and in his future. It is a living hope, and I can rest in that fact. Don’t get me wrong, believing in the true living hope doesn’t mean I idly sit by and just wait for death. I still believe, as his mom, it’s my job to fight for a cure now. It’s my job to fight for inclusion and to advocate for him in everyday life. I will fight for a cure, and I will fight for him, until there is a cure, or until I draw my final breath. There is no shame in that. I’m not doubting God’s sovereignty or trying to change His plans for his child. I just feel that it is my job to pray and do whatever I can to help my son and other children suffering alongside him.
It’s my most important job, though, to point my children to the hope that sustains, the hope that provides their true future: their living hope. The hope that only God can provide. The gift of hope God so freely gives each one of us. And yes, mama, I absolutely hate that my child is suffering. I hate what he has to go through. I hate the tears and the emotional, mental, and physical pain that he endures. That we all endure. I pray every single day for it to end. But I do know that this is all temporary. I rest in the fact that my son will be healed - if not in this life, then definitely in the next.
Revelation 21:4 says “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” Hope in God will not eliminate our pain here on earth. Pain, hardship, and suffering will still happen. Through a relationship with Jesus Christ, we can rest in God’s hope. We can rest knowing that this pain isn’t forever. This hardship isn’t going to be wasted. We can hope for our future. Our hope in God is exactly what the definition of hope is “the expectation with confidence that our future will be better.” When I look to what my son will face, and what we will have to face with him (and yes, eventually without him), I admit that I can begin to lose all hope. I honestly at those moments don’t know how I will ever endure that pain. It’s when I start to feel like I’m losing hope that I remind myself that I’m simply not looking far enough ahead. I need to shift my earthly hope to the Living Hope.
If I could go back and respond to that mom’s post, I would want to show her love. I would want to let her know that I hear her pain, and her pain is accepted. I would also want to share with her that their hope is never futile. It is never a waste of time.
In the book, Mere Christianity by C.S. Lewis, he beautifully highlights the value of hope. He said “Hope is one of the Theological virtues. This means that a continual looking forward to the eternal world is not (as some modern people think) a form of escapism or wishful thinking, but one of the things a Christian is meant to do. It does not mean that we are to leave the present world as it is. If you read history you will find that the Christians who did more for the present world were just those who thought most of the next.”
Thank you for joining us this week on “Take Heart”. Our prayer each week is for your heart to be encouraged. We are grateful that you are walking on the journey with us. Be sure to subscribe to our podcast on iTunes or wherever you listen to podcasts, so you’ll never miss a show. You can join our community by signing up for our weekly newsletter on our website at takeheartspecialmoms.com. You can follow us on Instagram at Take Heart Special Moms. If you have any questions or comments, follow the links in our show notes. We also have a full transcript as well. Also remember that we would love to hear from you. You can always contact us through our website or through Instagram. Thank you for listening. We will see you next Tuesday when all three of us are together to wrap up this month on HOPE.
