We are still here...for now

Today Lydia and I are at Cook Children's Hospital for her 6-hour video EEG. I had to wake her up at 3 a.m. so that she would be sleep deprived and fall asleep during the test. Many times EEGs will show normal activity during waking hours but abnormal activity as one drifts in or out of sleep. 

Keeping her awake during the drive, we chatted about stories from my childhood, joked about how tired we were and discussed how she might alleviate her nervousness about today. Maybe it would be more accurate to say I chatted and she grunted out a periodic, "uh-huh" or "yeah". Needless to say the sleep deprivation worked.

One thing that came of our discussion is that she hoped it would be a different man from last time to put on her EEG leads. He had joked heavily with her from the outset and demonstrated an overbearing manner. He called her "kitten" and "princess", telling her how pretty she was to manipulate her into silence as he roughly rubbed her head before attaching each of the 20 button leads. He denied all the discomfort she felt, and told her not to disappoint him. And then in the next breath said how much he'd like to take her home.

He's been here for over 40 years and has the lobby dedicated to him. We heard many stories of all "his" kids. He's obviously quite comfortable in his position and thinks highly of his own bedside manner with children.

I asked her how he made her feel, and she identified that she didn't really trust him. To be honest, neither did I. He's a man it's fine to be with as a tech for a test but one with whom I would never trust my child alone. It's not that he did anything wrong—just one of those people who come with a warning label attached to their character that danger could ensue and caution is needed.

It's good for her to have these experiences. It helps her  learn to identify different personalities and character types. She'll need "street smarts" in her life, and experiences like these give them to her first hand. 

With all her desire that he not be her tech today, we prayed for the Lord to give her someone different. But, I also encouraged her that if he was her tech, we could assume God had placed us in his hands that we might love him and pray for him. 

I don't know where he is at spiritually, but perhaps he needs love and gentleness from others to help him to learn to love and have gentle hands. Maybe he hasn't ever had the love of God penetrate his spirit as we have.  Our love for him could plant a seed God will grow to mature fruit in his earthly life, but most importantly in his eternal. Lydia was getting a lesson in God's call on her life to LOVE the unlovely, no matter how well you LIKE them.

 I told her if she was under his care today that the discomforts would be a kind of suffering, but one which she could embrace knowing God has a purpose for it. I don't know how much she retained during that sleepy drive, but may God impress upon us all that life's irritants should become God's pearls in our meek, clam shell lives.

All of this is possible in us who believe because our Forerunner, Jesus, was meek and suffered at the hands of the unlovely, but loved us yet. He is our example. He already lived out what God asks us to do. And because He died and rose again, He EVER lives to live out in us what He asks us to do—if we'll let Him. 

This morning we parked in the same parking garage we did for so many months to visit Luke. We descended the same stairwell. We entered the same lobby. But we did not turn aside to the same elevators to visit our little guy. He is not here. He is risen. 

How do I know that? Because it was the same on Easter morning when the women came to Jesus' tomb. "He is not here. He is risen." Jesus is Luke's forerunner and the firstborn among many brethren.

Our hearts cannot be sad for that, for our goal is that all six of our children follow their Forerunner into eternity as part of the "many brethren". 

Is it not also the same for ourselves? For our family? For our friends? For our neighbors? For our co-workers? For even the EEG tech? 

May we be Jesus' love on this earth to all men that it may be so, for He is not here. He is risen indeed! 

We are still here...for now.

"For His hour had not yet come"

...and no one laid hands on Him, for His hour had not yet come. —John 8:20b

The last two nights have been rough. Fear rises up in Lydia before bed because she is so afraid that sleep will bring her closer to another seizure. All of her seizures have occurred in the morning, and the last two have woken her out of sleep (she had another over the weekend).

I don't blame her for feeling that fear. It rises up in me, too, especially when I awake in the early morning hours. Will it happen again? It's like living next to a ticking time bomb I didn't set. It might go off any minute, or it might not. But it's there ticking, reminding me of the scary sights and sounds that come from a small little girl not in control of her body.

But the other night during our family devotions, God reminded me of a simple truth. We have been taking the kids through the book of John, and AB has noted that three times now the same words have been repeated...

"and no one laid hands on Him, for His hour had not yet come." 

Jesus has been saying some not so popular things around the teachers of the Law, and they clearly don't like this. Actually, they'd like to seize Him and kill Him. But they haven't, not because they couldn't find Him or reach Him, but because God wouldn't let them!. God's power is supreme, isn't it?

And it wasn't even that they would never be able to lay their hands on Him. No, just "His hour had not YET come". God prevented their action. He was in control. They had intent but no power to touch Him—until His hour came. 

They laid their hands on Him and nailed Him to the Cross. Had God lost control for a moment? Of course not. He was accomplishing that greatest of all purposes—reconciling God and man. All of history up until that moment had awaited that hour, and all of history since has looked back upon it. 

And so, as AB pointed out this phrase for the third time, the Holy Spirit illuminated it to me. Lydia's brain seems to be susceptible to abnormal electrical activity. Any time she could have another seizure. It seems more and more likely that it will happen, and sooner than the last one. 

But it will not happen until the proper time has come. And when and if that time is, it will be for God's purposes, which we know are always good. We saw that with Luke, so how can I not trust the same now? 

It brings me rest—I don't have to wonder if I've done enough to stop another seizure. I can walk confidently in the truth that God gives wisdom to those who ask, liberally without finding any fault (James 1). As we ask Him to show us what might be the root causes of her recent seizures and how to make wise decisions for her care, we can trust Him to help us to help her. And if another seizure occurs as we are in the process of finding these things out, He'll be there to walk through it with us and give us whatever we need. 

And as for the future, it's okay, whatever may happen, because our Lord loves us and cares for us. He has good plans for us, both here on earth and there with Himself for all eternity. As I posted last time, our lives really are just one continuum of being seated in the heavenlies with Christ—it begins when we are saved in this life and (as we usually think of it) continues at death for all eternity. When my life is over, and He takes me home, I CAN'T leave His side. But this side of heaven, I must diligently keep myself from running off on my own and firmly root myself in that seat next to Him. Only from there can I watch His purposeful "hours" come and go, confidently resting in Him.

Please pray for Lydia, that we'd have some good answers and strategies for becoming seizure-free. May the Great Physician lay His hands on her and heal her, and remove all her fears.

Seated next to Him,

Natalie :)

A gift from the Lord

Ps 34:1 I will bless The Lord at all times...

Yes, and even in these times of a new trial. Today was Lydia's appointment with the neurologist. She has had three seizures since January. Yesterday was her EEG, but, because her EEG was normal, we still aren't sure if she has epilepsy or if it is something completely benign. The doctor wants to collect more information before making a diagnosis, so more tests are in her future.

Is this a "here we go again" or a "no big deal"? We don't know. But we do know it is a "thing" and the Scriptures say "He works all things together for good to those who love God and to those who are the called according to His purpose." Because He said it, and we trust His word is true, we believe it. The  overwhelming feelings of "No, not again" or "please let this be nothing because I don't know if I can take more", still rise within me, but I make myself remember this promise is a fact. And when I believe it and abandon the "what if" thoughts, peace comes again. It's like I am walking as my three year old son, who takes my hand, going where he knows not but trusting without question it will be good because he knows I love him and would never harm him. If my son can trust me, a sinner and sometimes inconstant, how can I not trust a perfectly loving and never-changing God?

This is fruit from Luke's short life. God took what seemed unimaginably horrible and used it to teach us things we could learn no other way. Before I would have said that losing a child is one of the worst things that could ever happen, and my greatest fear was having a special needs child. But now I know the mechanics of how God turns these great tragedies into good. Romans 8:28 is not just a verse that sounds promising, but a real process with tangible benefits for our lives.

Here's more fruit. The other night as Lydia sat next to me on the couch, she turned and said, "I know why God is giving me these seizures." I asked, "Why?" She said, "Because He wants me to be closer to Him." Then she said,"I can't wait to be with Jesus." 

Now her understanding of God may not be perfect, but Lydia has become eternally-minded. She thinks not just of this world, but of the one to come. She had never thought so tangibly about what happens after death before we watched Luke transition from this life to the next. But now she sees being with Jesus as part of a continuum of her life in this world. It is like how she sees getting married one day — though it is so far away she knows it will happen and she looks forward to it. Without Luke, she would likely have been afraid of death. But now an eternal mindset sits in her heart as a gift from the Lord. She is seated in the heavenlies with Christ already as a seven year old! 

Oh that I would have such a perspective (at all times, not just the spiritually good days)! I am an eternal being — we all are — and this life is but a small and short part of that eternity. May we do as Jesus commands and set our hearts on things above and not on things of the earth. I'm convinced this command is not to torture us into giving up "the good life". No! He says this because He knows all our fears will fall away, and in their place will be the confidence of life lived in perfect fellowship with our loving Creator who originally meant there to be no sickness, pain or death when He first made this world. 

And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away. -Revelation 21:4

Let us live today as if it is done, because, if we are seated in the heavenlies with Christ, it is. (Ephesians 2:4-7)

Much, much love,

Natalie 

A Good Problem

Staring at me from the counter sits a basket full of cards and letters from dear friends and family who have written to share their love and our sorrow. Many of them I have read, but some of them not, since we left so soon after Luke's funeral service for CO. Since we've been back, school and ordering the house have taken the majority of our time, and by the time the evening routine finishes up, I'm just about finished up myself. 

So there they sit, some of them waiting to be opened, some to be read and others to be responded to. It is a good problem to have. It means we have many, many dear family and friends who have walked this road with us and who love us. Thank you, thank you, for loving us and acquainting yourselves with our grief. 

Necessities have crowded out grief for a time: three children asking for me to read to them; two boys wanting me to see their latest Thomas or block creations; laundry laying on the guest room bed beckoning as I pass through the hall towards my room. Where is the time for all that needs doing?

For a long time Luke's  "Patient's Belongings" bags from the hospital sat untouched among other clutter amassed after rearranging the kids' rooms last fall. I finally brought myself to go through them, and, of course, the tears flowed. Luke's thermometer, his patient ID tag, his red Wubbanub dog that held his pacifier. How I missed him! Fresh tears fell after many days of dryness. It was good but difficult—one more step in the grieving process; one less to-do demanding action.

And so the cards sit. I am planning to read them, but it is easier not to. It is easier to live each day with its distractions than to feel anew the pain of loss.  But I know it is time to get through them: to cry, to remember, and to feel loved and encouraged through it all. It's all such a strange mixture of emotion it can feel confusing. But I trust God will sort it out in my spirit by His Spirit. 

Though thank you's are in the works and taking more time than I'd like to make it to the mailbox, please know that if you sent a card or gift, we are so grateful for your love, kindness and thoughtfulness. God has provided for our expenses through you, sometimes before we even knew we had need. Lydia has had more seizures and so we begin our journey to discover their causes and treatment, but the ER bill was easier to stomach because of your generosity. We covet yet more prayers on her behalf.

A place to process

I began this blog awhile ago and only posted once...blogging was not something for which I had a lot of time to dedicate. But as I've already been posting updates on Caring Bridge regularly throughout Luke's brief stay on this earth, I thought it would be good to continue that as our family works through this season of grief. I didn't think Caring Bridge was the most appropriate place to do that. So here I am.

I recently wrote the following to my cousin and I thought it an appropriate place to begin here. Thank you to all who have journeyed with us so faithfully. Please feel free to keep commenting here the same as on CB. We love hearing from you. 


It's a difficult thing losing a child, and we grieved much over the last 5-6 months from when we first learned there were problems until now.

This has been a long road that has suddenly ended to our surprise. So much grieving has already been done in our hearts along the way I think we are in a little shock that Luke is already with The Lord. Every time we start to say, "Poor Luke", we stop ourselves, though,  because it is no longer "poor Luke" but "rich Luke", as he rests in Jesus' arms. For all of us, there is no better thing than that we go to be with Him. For us who are left behind, we grieve, but for those who see Him face-to-face there is no greater joy.

We are changed. It's like going through the birth of your first child. No longer are you a child yourself after that. You are changed.

Now I have buried a child. I hadn't ever seen anyone die, much less held someone in my arms as it was happening. I'd never watched a face relax the moment he slipped into eternity. Now I have, and as my eldest son reflected on the drive home, "it was so peaceful, not terrible as I thought. So peaceful. I'll never forget his face."

Thankfully it was only his body we buried, for we know his soul and spirit were birthed from this world's womb into eternal life. Just as a baby leaves his mother's dark, though cozy womb for a new one full of sights and sounds and new experiences,  Luke has left this world for one in which "no eye has seen nor ear heard nor has it entered into the heart of man what God has prepared for those who love Him." Luke is complete like even I am not, so I cannot be sad for him, only for us for not having known him in this life. My grieving is only for what we've lost, for he has much gain. I have been surprised that the tears that flowed so readily throughout this trial have dried  up with this thought, as naturally I am quite emotional.

But even we have gained, for now we have more treasure in heaven. We know we shall see him again and that the life He lived here was valuable and lived in God's purpose. God saw his suffering and has made up for it in unimaginable joys. Now Luke enjoys his reward in full and "his sufferings are not worthy to be compared to the glory revealed in him in heaven."

We know the same is true for us through this suffering in our own lives. As we've walked this difficult road even imperfectly, but clinging to the hope that we would "see the goodness of The Lord in the land of the living," we've witnessed His grace poured out on us to help in time of need. Our hope is realized. We've seen God's goodness. God chose to heal Luke by taking him home to be with Him. He's ended our trial by giving us back our life with each other and five healthy kids. And the bonus is that we have treasure in heaven. This life holds one less attraction, and eternity is more real than before.  We hope by the end of our lives to have transferred all the rest of our treasure there as well.

I didn't mean to write so much, but I see in the eyes of everyone who comes to me now a grief and sorrow that says, "I can't imagine going through what you've been through." If it were me a year ago, I'd have thought the same. "I don't think I can do that and may God spare me from it." I write these things to you so you can see what is in my heart now and know it is not so terrible as we both thought.

 And as you vicariously live this grief through me, please know there is immense peace. And should you go through your own grief (which we all will of course), please be assured that this same peace will be yours if you'll walk with The Lord through it. I am not super-spiritual or particularly strong—just one who found there was no other place to go and who chose to come to God's throne of grace to help in time of need rather than go it alone.