I’ve been keeping a secret for quite some time. A secret that no momma should have to keep. A secret that isn’t fun to keep as you anticipate to eventually tell everyone. It’s the kind of secret that reminds me that I’m not the only momma who has suffered. That there are so many mommas who have cried over their child who isn’t as healthy as they pictured their baby to be. And that someday, they would not be buried by their child, but would be the one to bury.
Bexley could have had Batten’s. I didn’t tell you because my fears were too big, my older children to vulnerable. My heart full of pain…
When Zeke had his first seizure and the many that would follow, in the back of my mind I assumed my older two were fine but I always wondered if Bexley, only 9 months at the time would eventually get whatever it was that we were fighting with Zekey.
I was always most concerned with Zekey. He was the one actually suffering. But Bexley was always only a few thoughts away. When I prayed for Zeke after this became an actual disease, as in, it wasn’t just the one or two seizures anymore, I a started joining her in my healing prayers.
When Zeke was diagnosed with Batten’s disease and before they knew which form he had (later finding out he has late-infantile), they said that none of my children were 100% in the clear. All I was told is that they each had a 25% chance of getting what Zeke had.
The thought crushed me to think my older two could be “uncreated” by this disease, as my husband bluntly puts it. Two sweet children I knew so well. I knew what they liked, what they hated and I had loved on them for 5 and 7 years. Then it hit me, there are mommas out there who have dealt with this already. They had children 5, 7, even 10 years old who were completely normal but have been diagnosed with Batten’s disease and would eventually loose the child they once knew so well. That momma would have to adjust constantly as the child lost each milestone.
We eventually found out that Zeke had a form that was typically diagnosed or onset at from ages 2-4. This was a hope that my older two wouldn’t be stricken with this disease.
But Bexley, sweet Bexley Jane had time left, to be diagnosed, to start seizing and walk this path we had walked blindly for so long with Zekey. It scared me to my core. I was constantly throwing my anxieties onto Jesus. He was the only one who could carry such a fear.
For 3 months, I waited, I cried for Zekey but now, for Bexley, too. God, please, no! Please, don’t take my sweet girl from me. I said this lazily. I said this because I needed to blame someone if it happened. I wasn’t thinking clearly. Thinking clearly made my mind work much harder. I had to fight what was so easy to say, that God would be the one to bring it on her. That thought is so false. God is not the creator of evil. So, when my heart was right, when my mind was clear, I just asked for healing. That she’d be healed in Jesus name.
I was exhausted, you guys. Caring and crying for Zeke. Praying for his healing but always knowing I could very easily go through this with my sweet Bexley Jane, too. It was by far the most difficult time in my life. Caring for my sick child, who I loved and was loosing all while waiting to see if there would be a repeat of this, knowing what would come for her, for our family. I wouldn’t have meds, diet change, etc. to cling onto blindly this time. I would know I could only cling to my Savior, Jesus and I’d have to learn much quicker to do that.
And it got me and my inner most being. My flesh worried and The Spirit pleaded for me. I know He did because I felt it. I was actually functioning, somehow. I was still walking, breathing and everything else that comes in this season.
Do you understand, you guys? My flesh and it’s fears are so strong when it comes to my babies. I will always have to fight trusting my kids over to God because He is good but it doesn’t mean they will be free from hurt, pain, disease, loss, etc.
I have to raise them up in The Lord and do my best, with all of my faults and failures with a dose of good intentions. I can pray and pray and beg and plead but trust. Always fighting to trust in God’s goodness. Trust that this place, here on earth, it’s not the end. Jesus won!!! Whatever heartache that those who live for Jesus face on this earth, it will be wiped away.
Bexley was not diagnosed with Batten’s disease. She’s going to be okay. Cyrus, Eisley and Bexley will not die because of this horrible disease. When I heard the news, I was thankful but numb. My body felt heavy. My heart beat slower. I dragged on that day.
Why wasn’t I happy!? Why wasn’t I celebrating like I thought I would be? I knew I was thankful. Relieved.
Wait a second! My kids each had a 25% of getting Batten’s and a 25% of not getting it or being carriers. WHY?! Why the worse?
And when I had a second, I laid next to Zeke and I cried and I cried and I cried. I told him I was so sorry and that he truly is the strongest person I have ever met. I reminded him that this burden he carries isn’t for nothing. Through my tears, I told Him God was strong enough, good enough to bring good out of such sorrow. His suffering wasn’t for nothing. God was doing big things, just like the song I made up for him before first seizure, when all he had was a speech delay…before I had a clue as to what was coming.
Here is an amazing response from Andy’s youth pastor, now the pastor of a church out in Colorado called, “Scum of The Earth Church” also the author of the book, “Pure Scum” (READ IT! It’s SO GOOD!), who read my post and also Andy’s post …
“As I read this, I kept thinking, “Yes, I know this terrible truth. Andy and Bree are too young to learn this, and they are experiencing it in a depth of sorrow I have not, even at decades older.” And then I thought about Zeke, who is experiencing it younger still, first-hand. To be counted worthy to share in the sufferings of Christ is a devastating fellowship of grief and loss. Aside from earthly healing, there has to be a reward of some kind, even in heaven, and perhaps yet in this life. Either that, or Jesus suffered in vain. He is exalted above every other because of his sufferings. He is one with the Father and the Spirit because He was obedient unto death. And if Zeke, at his tender age, is called to follow in the footsteps of our Lord, then he is assured of a relationship with his creator that goes beyond words, beyond thought, beyond body, time and space. I continue to pray for his healing now, and I will not cease asking our merciful Savior; but it is a special child who enters the fellowship of Christ’s suffering, and he will not go unrewarded, nor will his parents. Satan has asked to sift you like wheat, but Jesus is praying for you, that your faith will not fail. If Jesus does not heal, He will be waiting for Zeke, and for you, to lead you — as a shepherd leads his sheep — on the far side of it all.” -Michael Sares
Zekey will not be defeated. God wins and Zeke is a part of God’s family.
For Bexley’s birthday, I had a hard time celebrating. Was this the last “normal” year we had with her? Would I have to learn to how to love her through heartache like I did with Zekey?
And I enjoy life with her so much more. I don’t live in fear that she may be slowly taken from me.
I can laugh a little harder, hug a little tighter but still look over at my sweet Zekey boy and long for heaven, for home. For Jesus’ sweet return, to set things right.
Thank you for praying and for believing with us. Thank your for letting and often times enouraging me to just be a process, not having everything figured out. None of us fully do but the goal is to keep trying to become more like Jesus. More like who we were created to be. The world is always distracting us and I’m not exempt from this. The world is trying to make life look good enough without Jesus and it’s a lie, you guys. Jesus is so vital. So good. So loving and full of more than enough grace, even for me.