Our Son’s Epilepsy Was Only The Beginning of the Story
You know those times when you see your child deeply struggling and in pain, and you would do almost anything to take that pain on yourself? But instead you can only support them through it? When they sob, all you can do is hug them tight and pray. When they feel buried under the weight of challenges most adults will never face, you tell them that God is with them in the dark places. When they step out in courage to try and try and try again… and still fall far short… you reassure them that God will use these trials to strengthen them in ways we can’t yet comprehend. And yet even as you show your child how to stand in faith, your own fear sometimes breaks through. You fight panic. Your heart aches.
You know that feeling of praying with everything that is in you for God to take this trial from your precious child?
That’s where Jeff and I are now.
And after dealing with our situation for months on our own, talking about it with only our close family, friends, and prayer team, I realized: you are our family, too. We’ve shared time with many of you at events, conferences and worship services. Many of you have read our books and shared them with others. You’ve invited us into some of the most intimate places of your lives. So we wanted to invite you into ours.
I thought you would want to know what is going on; that you would want to know how to pray for us.
As some of you know, we discovered two years ago that our son (now 13 years old) has epilepsy. And although his seizures are thankfully under control, we learned last year that he has uncontrolled brain “spikes” every few seconds. This abnormal electrical activity is not seizure activity, but that technicality doesn’t really matter: Having hundreds of spikes per hour appears to be dramatically impacting his working memory and ability to process things in a normal way. It has hindered his ability to comprehend what he reads or hears in the way he used to.
We know so many families deal with so much worse. But watching our hard-working, desiring-to-please, straight-A son suddenly struggle with his brain betraying him (the official diagnosis is a “cognitive communication deficit”) has been very hard. Especially in those moments when his great attitude cracks, his happy-go-lucky mask falls away, and he breaks down.
This summer, within a week of getting that diagnosis, we stepped out in faith to get him into a type of highly-recommended, intensive, daily language therapy that was brand-new to us. “In faith” because we had tried many things that didn’t work very well, and had no idea whether this would help much more. “In faith” because he has so much courage and is willing to work hard, but there is only so much discouragement a person can take if he tried and tried and it didn’t work well. “In faith” because it costs $30,000 a year, which might as well be the moon to us. And “in faith” because so far our health insurance is not willing to pay for much of it.
Within a month, we had seen our son’s reading comprehension grow by leaps and bounds. We saw the light in his eyes as he animatedly explained – with perfect clarity – something he read or learned. Some wonderfully loving family members stepped in to help. And we opened our mail one day and out fell a $3,000 check from a caring couple who we don’t even know that well, who simply felt led to help with our medical expenses.
God was telling us: I’ve got this.
I remind myself of that in the dark moments when fear tries to take hold. What about his future? What about our finances? How will we pay for these medical expenses and still pay our staff salaries? Will this spark of hope grow, or will the many real challenges bring us crashing down again? Will he be able to go to college and fulfill his dream of being an engineer and inventing the Star Trek teleporter? Is there a path of healing for his brain?
In those moments, I remind myself of what I know: God is good. He’s got this.
I look at our son, and see a kid who the professionals expected to be dealing with clinical levels of depression or anxiety. Instead, I see a good kid with a great attitude, and a simple but deep trust in God. He trusts that God has got this.
I know that God has this.
But I also know: we sure appreciate your prayers. Prayers for our son’s healing, for the insurance company to agree to cover his treatment, for miraculous provision of the large costs that arise even if insurance covers it, and for us to honor God through it all.
I don’t know how often we will have updates – everything is such a long process – but we will send out updates as we have them. Thanks for being our family, and letting us share.
Please know that I am praying for you all and your son! I also have Epilepsy, so I understand the challenges involved. The depression and anxiety are often side effects of having Epilepsy, it is good your son is having a good attitude!
2servants – thanks so much for that encouragement. i have heard that those are very common side effects and i am so grateful that our son is NOT impacted that way. Thanks for your prayers. You sound like you KNOW how to pray! 🙂
I know you are going to get a ton of suggestions – too many to process. I just wanted to suggest getting ketones into the diet, and watch some of Dr. Karyn Purvis’ videos with Empowered to Connect and how she addresses sensory and seizure issues for kids who have experienced trauma.
Onthuhlist – thanks for that! actually yes, several people suggested ketones but i didn’t know where to start looking at that, so hearing a specific name to check out is super helpful! thank you!
Dr. Karyn Purvis – Empowered to connect
Thank you for sharing . I pray that God continues to provide for your every need.
Thanks so much. need those prayers right now!
Shaunti –
Your family is in my prayers. I cried reading this – it’s like hanging your heart out there for all to see, and am glad you shared this as the body of Christ is about sharing each others’ burdens.
Your poor son! I am so thankful to hear that it sounds like you have a young warrior in your midst. I loved hearing how his treatment is going and my prayer is that God continues to show you that He does indeed have this.
I can relate a bit on a much smaller level when my now, 15 year old, was 3 1/2 and still not talking – but something else was wrong too – his brain couldn’t comprehend what I was trying to communicate – and thus, he couldn’t communicate with me either. It was so frustrating and scary at the time. When you can’t communicate with your kidlet, it’s hard being able to get to know them and know how they’re feeling. But like you, I knew – God has this. And we prayed. A lot! After a bunch of testing, he qualified for a special program with an SLP. He was almost 4 before he said his first word. With the help of our SLP, we started to ‘communicate’ using simple sign language. Over the next three years we saw more and more improvement and now we can’t get him to stop talking. I pray that you get this blessing too – in that you get to see your young man improve and flourish! My son too has a dream to be an engineer. May both our sons accomplish their dreams with the Lord as their joy and strength. In prayer, in Jesus … Rizay.
Rizay, okay we’re even because YOUR post made ME cry! Thanks for sharing your story. And for the wonderful example of how beautifully God watches over and brings along our children.
Thank you for sharing and being vulnerable. We will be praying for you all!
I appreciate that SO much, Heidi. thank you!!!
Dear Lord,
I pray that you will keep your hand over this family and continually let them know that You have got this. Whatever situations may arise, or unexpected expenses, or emotional challenges of fear and doubt, may they always know that in your grace and your kindness, and in the deep unrelenting way that you love all of us, You’ve got this. And you will use this for your glory and for your story to be told. I pray for strength and guidance for the parents and that they may lean into you so you can whisper your truth of love to their hearts. I pray for their son that he may continue to be a shining light of a deep trust in you. I pray for healing, I pray for grace, I pray for strength – each and every step of the way for this family as they move forward in this.
In Jesus name I pray,
Amen
Thanks so, so much for your prayer. i’m all teary-eyed now. i know God has this!
Thank you for sharing this. I am so very grateful for the effects of your superb ministry. The least I can do is pray for each of you.
Chuck, thanks so much for that encouragement. We figured folks would want to know; that there were those, like you, who would want to pray for our son and the whole situation. I won’t pretend that it hasn’t impacted the ministry, because it has! It has been hard to meet deadlines when adding a lot of driving to/from therapy, doctor’s visits, and arguing with insurance companies into the calendar each day. But i see all the time that God is in control, and i know He’ll work out the ministry needs as well, so that others don’t suffer from my distraction! 🙂 Thanks for your prayers.
Thank you for letting us know. I can relate in some ways. Our oldest daughter was stillborn, and is now 25 years old. Yep…Apgar scores of zero and again zero. Our doctor was praying aloud while doing CPR that morning. There is no medical reason she should be alive, let alone functioning, but we know the Lord had a plan for her in all of this. She is hearing impaired, and struggles with short term memory loss. Each day of the past 25 years has been challenging for her. BUT….but…she loves the Lord, and is joyful about serving Him. She has a deep empathy for others, that her own struggles have made all the deeper. She graduated with honors from college in May, and is now teaching deaf students. This is from a girl who was not expected to ever walk, talk, or even feed herself. We have seen the Lord provide for medical bills in the hundreds of thousands. We have watched Him draw her close to His heart as she learned to walk in faith. Really, what more could a parent want for their child than to learn to walk in faith? We did not write the lesson plan, but the Father knew what he was doing. He has a plan for your son, as well, and you have the prayer covering of many. May the Peace of the Lord be with you every step of the way.
Oh my, Karen. I needed to hear this story. What an incredible, incredible testimony of how God works in truly mysterious ways to give your child miraculous healing, to bring her close to Himself, to use her in amazing ways, to provide for the medical costs, and most of all to show that HE’S GOT THIS. That He is working. That He is so, so good in ALL things despite the human, eternal perspective that could easily doubt his goodness and loving-kindness. He has a plan. I needed to hear ALL of that. Thank you SO much for sharing.
Shaunti,
I was just getting caught up on email and had missed this wonderfully vulnerable post from you. Thank you for sharing. If it weren’t for the many people praying for me when I was 18 and diagnosed with an unknown bone marrow disorder that caused me to have zero white blood count, I wouldn’t be alive today. I had a praying doctor who showed up at my bedside when God called him at 3:00 AM to pray for me. He along with a host of others around the world praying for me was the only explanation of my miraculous recovery. This was in 1980 so there was no internet, FB or texting. This was by word of mouth and Holy Spirit prompting.
I still have a bone marrow disease that should have me long gone, but God had other plans for me. I believe he has other plans for your son as well. Praying for a full recovery, bright future and financial ability to see it through!
Thank you again for sharing!
Sabrina