Wednesday, October 23, 2013

Celebrating Life In Heartache- Bexley Jane

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.



Saturday, October 12, 2013

'Course He's not Safe! But He's Good.'

Trusting in God should come naturally to us because it's what our original selves were meant to do. Before Adam and Eve (and if you or I, we'd do the SAME thing!) ate the apple in The Garden of Eden, our communion with God was as it should be. There was no shame, no silence from God, nothing in their lives that would try and drag them from The Only One who would and did fulfill all desires. Everything was exactly as it should be.

Now, thousands of years of sin in the world later, we struggle to trust in even a God who can make good out of the worst of the worst. We struggle to go to Him first because we have friends and family that will talk directly to us in a way that is quick and comfortable. Little effort is needed. We struggle in our desires for wealth, beauty, simplicity, and easy life, if you will. And none of this was a part of the life before the apple. The apple that brought sin into this world and separated us from a perfect communion with God.

And it brought a world that isn't whole. Isn't perfect. There is war and there is death. There is disease and murder. This world offers only temporary or if I may put it bluntly, false hope. You cannot rest in the words of humans. You cannot truly rest in anything you have on this earth. You will not take it with you when you die. So, where is the hope in that? The treasures on earth stay here, you do not. Is this what you want to cling on to for hope? Something that fades away?

I love Jesus and I have dedicated my life to following Him. But I'm still here in this world that offers pretty things, 3 steps to a simpler life, a healthy + happy family and so there's struggle still. I naturally want these things in the most perfect of ways. I long for a simple life, nice things, a happy + healthy family but what is different in me now is Who lives inside of me.

Having asked Jesus into my heart while I was a little girl started me on a path that brought nothing more or less than you, necessarily, other than hope. Eternal hope. Hope that breaks through any suffering here on this earth. Any pretty thing that tries to turn me away from God (as it promises happiness) now has a battle to fight in me. A battle against real Truth. That nothing or no one on earth can offer what only Jesus can.

This hope can go along with trust, too. As we wait for results on genetic testing for my other three, it is by far the most difficult thing we've had to face yet. Waiting and wondering. My heart aches at the thought of any of my other three being affected by such a terrible, "earthly hope"-shattering diagnosis. My older two more than likely do not have it...but Bexley. Oh, my sweet two-year-old Bexley is at the prime age for Batten's to take over and that scares me to my core.

A quote from C.S. Lewis'  Narnia Chronicle, "The Lion, The Witch and the Wardrobe" where the children, Peter, Susan, Lucy and Edmond enter into Narnia through a wardrobe in their uncles home. Edmond has already given allegiance to the witch while the other three go to the home of the Beavers. They tell the children that they will take them to see the King, Aslan.

"Is - is he a man?" asked Lucy
"Aslan a man!" said Mr. Beaver sternly. "Certainly not. I tell you he is the King of the wood and the son of the great Emperor-Beyond-the-Sea. Don't you know who is the King of Beasts? Aslan is a lion, the Lion, the great Lion."
"Ooh," said Susan, "I thought he was a man. Is he - quite safe? I shall feel rather nervous about meeting a lion."
"That you will, dearie, and make no mistake," said Mrs. Beaver; "if there's anyone who can appear before Aslan without their knees knocking, they're either braver than most or else just silly."
"Then he isn't safe?" said Lucy.
"Safe?" said Mr. Beaver; "don't you hear what Mrs. Beaver tells you? Who said anything about safe? 'Course he isn't safe. But he's good. He's the king I tell you."

So beautifully written. So true.

A life lived for Jesus promises trials. We are not exempt from a broken world affecting us, our lives, our bodies. We are not "safe" in this world. But God is still good. He is so, so good and the eternal safety in heaven, where all the suffering here on this earth will be made right, according to God's perfect will makes the suffering here worth it.

So, is God enough for you? Is He enough to walk this life with Him, here on earth to be able to say 2 Timothy 4:7 with full confidence?
"I have fought the good fight, I have finished the race, I have kept the faith."

Or is your life, as it is, without Him too comfy and safe? Or maybe you do not feel a hope at all and you're intrigued?

Being intrigued is a beautiful thing, but actually taking a step forward, into the arms of Jesus who WILL get you through this life and all that comes with it, even with many blessings (I swear we feel blessed!!) has an eternal gift of wholeness and a perfect communion with Jesus, once again! Going back to a place like Eden.

For those who wonder how I show any righteousness. How I have peace? Please take a listen. This song explains it perfectly.

Saturday, October 5, 2013

Tear-Stained Cheeks

Some of you know, we took Ezekiel to University of Michigan on Thursday due to increased seizure activity. His demeanor changed so drastically since we had started the NG tube and was declining and quickly.

I still blame it on the formula but then there's this other thing. The prayer for Mercy. Ya see, this disease, Batten's form NLC2 that Zeke owns is a form that allows a child to live anywhere from 8-12 years old. A sad, sad diagnosis for any parent or loved one to hear.

But, how would a life slowly or I guess quickly being taken away be a good thing if they could make it to 8 years, 12 years?! From what we had seen in Zeke, the suffering prolonged sounded like a curse, not a blessing.

For Andy and I, through prayer and wisdom sought out to our Heavenly Father, we realized that comfort was our highest priority. Quality, not quantity in the time we have with Zekey. Why prolong suffering? Why let him breathe through a ventilator while he is brain dead? It seemed selfish.

With this new peace we had, we started praying differently.

"Yes, Lord, please heal him. We know you can. May Your will in heaven come down to earth in Ezekiel's body. But, have mercy. Please don't let this disease drag out. Please make our boy comforted. Heal him + have mercy."

Do you see? When we do not fear death, we have freedom to pray in a way that gives in to trusting more to One who can and should be trusted. God himself.

We will pray like David, asking for his precious boy to be healed until his dieing days.  For our sweet boy, Ezekiel to be healed because we are called to and God can.

But we want God's mercy poured out. We cannot tell the future but we can be obedient and give God space in our hearts and our words to do BIG things.

Asking for mercy has brought a quick decline. As in, the latest picture you have seen of Zekey in Cincinnati, smiling in a wheelchair is no longer the boy you would see in a picture of Zekey now.  He can barely smile, cry out and he is dead weight. No longer able to hold himself up in anyway. No longer able to jump on his knees sloppily to show you his joy. He chokes on his flem and hospice is coming soon. Very soon.

Now, we are thankful for a smile.

His body is literally overcome by involuntary movements causing his arms to be thrown up in the air and then his feet follow. It's as if you are watching a moving where someone is being controlled by one who holds their voodoo and their body responds in ridiculous ways. True story.

He is exhausted. He knows that his body moves this way because when given a split second to be free to think, he thinks it's annoying and cries out.

He's suffering. He's exhausted. He needs healed. He needs mercy.

I don't know what his healing will look like. I do not know how mercy will continue to unfold but I do know these will come to pass one way or another. What Jesus did at the cross was so big that this disease will be wiped away completely either here or there. God is merciful and may show it through taking Zekey home sooner than later...

I just do not know. But details matter less and less. I feel as though I am snuggling deeper into my Heavenly Father's arms as I hold my sweet boy. I have peace where there is chaos all around. I rest in His goodness and the truths of who He is. And I am still + know He is God.

And I cry and I hold and cuddle. I look as deep into Zeke's lost eyes as I can to try and get that split second to be able to steal a smile.

University of Michigan's Children's Hospital (Motts) kinda blew everyone else out of the water.

Columbus neurology was a terrible experience for us. I cringe at the thought of that season even though Zeke was much healthier than he is now.

Cincinnati was our saving grace and I honestly believe God intervened and brought us to Dr. Franz who came along side us, took Zeke's "case" and did some really great things for him and our family.

After moving from 1.5 hours from Cinci to 3.5 hours (our moving close to family), we mentioned we'd like to try and work with a neuro closer, suggesting UofM. His eyes lit up as said he knew 2 really good neuros there and would be happy to work with them. It was perfect!

But when Zekey started this downward decline, we knew we had to get him in somewhere. Toledo hospital just doesn't have the professionalism (to be nice) or the resources to take care of Zeke's case. So, we took him up to Ann Arbor...."That place up north!" say the buckeyes.

I didn't expect it to be better than Cinci. Once we were actually admitted, I couldn't believe the beauty and space in the room. The view was breathtaking and our care was top notch. The bedside manor was better than anything we have experienced. And again, I have only good things to say about Cinci so to be even better says something.

The same Dr. that Dr. Franz had mentioned he knew and really liked for us was the same Dr. on that night in Ann Arbor. Dr. Robertson. Interesting....

She was lovely and was so excited to know we came from good hands, Dr. Franz. She took her time talking with me, loved on Zekey, cried with me, hugged me and did everything she could to make him comfortable. She also let me make the decisions that didn't need to come from a dr. because she believed in me. She believed my goal was to make Zekey safe and comfortable.

One of the residents in Ann Arbor (Michigan for you people not familiar with that team up North) asked for me to go into more detail as to why it was such a difficult stay in Columbus (every wolverine wants to hear why a buckeye sucks...ha!) and I basically summed it up saying, "At least in neurology, because I have seen friends get fantastic care in other specialties, they were extremely egotistical and wouldn't hear me out. My opinions or concerns for my son were often shrugged off. They didn't speak to me as a human but as one who doesn't have a doctorate. It was terrible. If I had any wisdom to give to you, I would just remind you that you have worked hard to earn your degree and that's something to be proud of, but the families you come in contact with are suffering and I can't speak for everyone, but a lot of us are here because we deeply love our child and want what is best for them."

She smiled and was also one who told me she was praying for Zekey and some other really nice things.

It's clear God's doing big things in the hospitals he takes us to as we use every opportunity to share the peace and hope we have because of Jesus. We cry, yes. The peace and hope is still something we have in a world not yet made right. So there are tears, there is brokenness, there is death.

But Jesus already won and so we cling to that more than anything else we see going on here. We share this beautiful hope with others and we ask for God's kingdom to be ushered in.

And there is beauty in so many of you who are begging to help in some way. Today, a surprise blessing from Kristin, over @ LilyandLight,  who was supposed to be my roomie at the Influence Conference I missed due to Zekey's sickness. She came and visited me (and little Bexley) at the hospital!! Just her presence and willingness to come into my chaos blessed my heart so very much.

Kristin, thank you for my Influence Necklace and journal! I felt like I got a small piece of the weekend so many woman were blessed by through these little gifts. You're as lovely as they come!

To my readers: Your words of encouragement and prayers are so appreciated and felt. I cannot respond to all the love you share but I see it and I'm so, so thankful. Our family will forever remember the love of Jesus poured out through so many of you.

Thank you. From the bottom of my heart...thank you.