NOT an orphan

I have spent the last couple of months processing and praying about how to share this with you all. Because it’s an amazing thing. But in order to truly appreciate the provision, you need to fully appreciate the need. And though much of the need was of a financial nature, the emotional need was just as, if not more, important.

A few months ago, I was invited to participate in a podcast with an organization called Hunter’s Hope, to share how God has been, and continues to be, a very present help and Hope in our family’s lives as we navigate Leukodystrophy. Upon completion of those recordings, they invited all of those that participated to a retreat during which we would have opportunity for fellowship and community with those similarly afflicted and walking with Christ. It was a gift the enemy would try to steal. In several ways.

Shortly after recording, I was approached about an opportunity to speak at a local women’s conference on Romans 5:3-5. Considering the timing of the invitation and the subject matter, I was certain this was something the Lord was asking me to do.

So, I was simultaneously proofing the transcript from the podcast, writing for the conference and writing a mini message for the retreat. I should add that none of these things are within my comfort zone. In fact, if I was to make a list of things I dislike, public speaking would take a top slot. I have a great story about a public speaking class in high school that involves hives and a “D”, by the skin of my teeth, that I would love to share with you sometime.

But I was also struggling with audience and subject matter. You see, whenever I share our family’s story with people I start to feel this “separateness”. Even with fellow Christians, I am usually reminded that our life is not “normal”, it just doesn’t look the same. Even with those that love Christ, there are many that will avoid us because they don’t know how to respond or relate to our family. Leukodystrophy often sets us apart. As I prepared, I knew I needed to prepare for these feelings as well. Yet, I am absolutely convinced of the need to share the incredible ways God has loved and provided for us. How we have had the opportunity to know Him, trust Him and love Him more intimately through trial.

Then there was the retreat. I am a homebody. I don’t like travel. I prefer routine and the familiar. So, I was preparing to step out of my box. Because it was a gift. But as I prepared for that retreat, I knew I had to prepare for another kind of “separateness”. Within the world of Leukodystrophy, Hubby and I often struggle with survivor’s guilt. Because our kids have a treatment and have received that treatment in time to positively impact their quality of life. In those circles we are acutely aware that we are the minority and that the quality of our children’s lives has come at the great cost and contribution of so many beautiful children that came before and paved the way for things to speed diagnosis and treatment. And my heart breaks for those families. I grieve with them and wonder why our children were spared, while theirs were not. Survivor’s guilt.

So, there I was feeling stuck in the middle. Acutely aware of our “separateness”. Simultaneously feeling sorry for us and feeling intense gratitude. When Oldest Son borrowed my car….and it blew up. Okay, now you’re likely picturing a fantastic fiery explosion. But it wasn’t that dramatic. It turned out to be the engine that blew up. Which is much less impressive than one would think. It just quit. And sprayed liquid all over the highway. Done. Kaput. Dead. Or, as the sympathetic mechanic explained, “catastrophic failure”.

Now, this would likely be stressful for almost anyone. But, when your credit was completely destroyed by a diagnostic journey and you had saved and saved to buy that vehicle outright…. For it to barely last a year, it’s a little more than stressful. It’s downright frustrating. And when you have absolutely no savings to replace it and no way to borrow money to replace it, it becomes a bit of a crisis.

So now I’m feeling the “separateness” on a whole different level. Because now I’m aware of another way in which I often feel alone. And this is one part I wasn’t sure how to share. So, in order to honor my mother and father, and to love you well and protect your hearts, I will simply say that due to the fall, we don’t have much family to give us a hand. Or a co-sign. Or a down payment. Or maybe just a hug.

This is when I MAY have indulged in a small(ish) self pity party. In my mind’s eye, I always picture Baby Girl at about two years old, laying on the floor of the kitchen at my feet, face down, with her hands covering her eyes. And that was my inner self. Channeling my inner two year old, still sitting at my Father’s feet, but in silent tantrum mode because I didn’t like what was happening. Although, if I’m honest, it wasn’t completely silent. There may have been a little dialogue along the lines of….

I’m doing all the things! I don’t like to speak, but I’m gonna speak. I don’t like to travel, but I’m gonna travel. I’m going to feel all the feels I don’t wanna feel and step out of my box and I’m gonna shine my light and I’m gonna tell of Your goodness, even if it might kill me (okay, there was a little bit of drama) and we could sure use just a LITTLE bit of protection while we do it! A hedge. Even a speed bump for the enemy to slow him down would be helpful. Heck, could You blow up HIS engine instead??

So I took the gift card from a sister in Christ for travel expenses, packed my bags and stepped out in faith. With no plan but His because we had no way to fix it.

And surprise, surprise, He had a plan. And it was SO much better than I could have asked for or imagined.

It started with a borrowed vehicle and the gift of time so we could try to save enough money for a down payment. Hopefully enough of one to qualify for a loan. We hadn’t used credit in seven years, I was inwardly preparing for the best case scenario of a ridiculous interest rate on another “lemon” from a shady dealership. But we’d have a vehicle, and that was the important part.

Then, it really got good.

We were down to one more week with our borrowed wheels and I’d just put on my list to cancel the next couple of weeks of Baby Girl’s occupational therapy before I started dinner. Mini Hubby was climbing walls and getting on stressed nerves so I sent him to take out the garbage and get the mail while I got making chili.

My kitchen is still holy ground.

I’m chopping onions and garlic and singing Shane and Shane’s Psalm 46 (One of my “fight songs” because it reminds me how big my God is) and my heart is softening with sautéing onions and the stress drains off with the juice of diced tomatoes and the door bangs open with an oblivious boot from an oblivious boy and both boy and blur of puppy race by with a stack of mail and a lot of noise and I laugh because…holy ground. While my chili simmers, I open this.

And it all goes quiet. Even the boy and the puppy. And while the chili burns and my ears ring and my eyes and nose fill, the Lord leans down and grabs my face in His hands and tenderly tells me,

“You are NOT an orphan. Stop acting like one.”

And now I’m laughing and crying and the “separateness” is gone because the Love envelopes me and crowds it all out. And I don’t even care that my holy ground smells suspiciously like scorched dinner and I run into Hubby who can’t quite wrap his head around what I’m holding.

Because that kind of outrageous generosity takes awhile to process. And when you know that the generosity came from an outpouring of love for a little girl lost to Leukodystrophy, it gets even more complex.

I spent the next several days “God Crying”. This happens quite a bit in our house. When the kids have caught me at it, I used to have to reassure them that it was a “good cry”. While texting with someone one day auto correct redeemed itself and changed my “good cry” to “God cry” and I realized it was far more accurate. They’re tears of awe, gratitude, joy and love. I think, a form of worship. And if you’ve ever heard me sing, you know it’s a form of worship that is far more beautiful, even if it’s an ugly cry.

Now I’m gonna feel a little like Billy Mays, because, “That’s not all!”. While we were still processing a week later and narrowing down our car search, we got an envelope. With another $1,100. Which brought the total to almost EXACTLY what we paid, with tax, for the lawn ornament with the blown engine. And this generosity came from the other side we sometimes feel “separate” from.

When that car engine blew up, I could not have imagined a scenario in which we would have our needs filled so completely. But even better, in a way that reminded me of my perfect Father’s love and care for me….through people that so thoroughly removed those feelings of separateness. Through our Leukodystrophy family and our church family. So much more than I could have even thought of or imagined, never mind asked for.

Ephesians 3:20

Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us

Do Not Be Deceived….

No.
Uh uh.
Just stop.

There are few lies out there that get me more hot under the collar than this one. There is certainly no shortage of twisted scripture, verses taken out of context or outright lies out there. In fact, it took me only a couple of seconds to find this garbage, and hundreds more like them, in the dump of social media. However, this particular lie has hurt me and so many I love. Just look at the natural progression of thoughts…

He doesn’t. He knows our every weakness and knows that we are only dust.
Oh, beloved, He knows.
He knows, and it’s okay.

What could be more discouraging than knowing, without a doubt, that you can’t handle something and being told you are wrong?

If this is true, what is wrong with me that I can’t handle this thing?

If this is true, what is wrong with God that He doesn’t know my limit?

I am convinced this particular lie originates in the pit with the sole intention of driving us to despair. Hoping to convince us to give up. On ourselves and our God. And like most lies, there is usually a small measure of truth. And that’s where I think this one is dangerous. Here is where this Truth was twisted. 1 Corinthians 10:13 says, “No temptation” — or test, since it is the same word in Greek — “has overtaken you that is not common to man. God is faithful, and he will not let you be tempted [tested] beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.” The key part of this verse is left out of all the “inspirational quotes”. HE will also provide the way of escape! By His grace, His mercy, HIS POWER, HE will enable you to endure it! NOT your own strength! What a relief that this burden, whatever it is, does not fall on me alone! What freedom in knowing I can fall to pieces on occasion because I know my God has it! What peace in the assurance that my all knowing, all powerful, all loving God will enable me to endure through this thing!

No pulling up of bootstraps, no putting on my big girl panties or acquiring the stiff upper lip (whatever that is)! Thank God!

So, what do we remind ourselves when we have reached our limit? What do we tell the friend that has lost the child, the beloved parent, the spouse to adultery, the health to cancer, the house to financial hardship, the family and friends to addiction, etc.? We tell them the Truth and light up the dark places and we tear down the lies threatening their peace that surpasses circumstances.

  • God does not give you more than you can handle WITH HIM. And if you are in Christ, you are NEVER without Him.
    • Matthew 28:20 “teaching them to observe all that I have commanded you. And behold, I am with you always, to the end of the age.”
    • Psalms 139:7 Where shall I go from your Spirit? Or where shall I flee from your presence?
    • Psalms 145:18 The LORD is near to all who call on him, to all who call on him in truth.
    • Hebrews 13:5 … God has said, “Never will I leave you; never will I forsake you.”
    • Joshua 1:9 “Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”
    • Isiah 41:10 “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.”
    • We could do this all day…. But you get the idea.
  • God DOES give us more than we can handle. Even the Apostle Paul assured us he was given more than he could handle. None of us are immune. As stated in our original verse in 1 Corinthians 10:13, trials are, unfortunately, common. We live in a fallen, broken, world.
    • 2 Corinthians 1:8 For we do not want you to be unaware, brothers, of the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself.

During a time of year that is stressful for many, overwhelming for others and often full of grief and disappointments, don’t fall victim to this lie! Don’t let the enemy drive you to despair. Be cautious with the “inspirational”, seemingly biblical quotes and memes that abound. A true test of the truth of many of these is to ask the question, “Is this making much of me, or God?” and, “Is this asking me to rely on myself and my own understanding, or God’s?”. If the answer to these is God, it’s probably good. However, don’t stop there! Look for yourself. Get into the Word, our only source of Truth, and make sure you’re not being deceived!

Friend that is struggling during this season, do not be deceived. Christmas is not merry for everyone. But our Hope is not in our current circumstances. If we’re in Christ, our Hope is in what He did on the cross, taking the punishment for our sins, that we would spend eternity with Him. And the MANY promises that we are not alone and He will enable us to bear what we carry here.

Baggage

Sometimes I wrestle with the things I’m being asked to carry. And I have, in my head, cheerfully throttled many a person that has attempted to tell me that God only gives us what we can handle. Because that’s an enormous lie from the pit. I have learned that He gives us exactly what we can’t handle on our own. To draw us closer to Him and reveal our great need for Him. A severe mercy. There’s a great book on it.

Anyways, here is an allegory of God disabusing me of the lie of independence. Again.

We’re walking hand in hand through the terminal, His hand warm and strong in mine. This isn’t the first stop on our journey and it won’t be our last. I’m a little jet lagged at times with the speed of our travels and at other times impatiently, anxiously waiting for Him to let me know it’s time to move. Some stops are in far off, isolated locales full of discomfort and trial and I’m eager to leave, while others are familiar places of comfort and peace where I’d like to rest until He calls me home. Alas, my next stop does not appear to be home.

Have you ever noticed the melting pot of the airport? We pass the down trodden, the high rolling, the anxious, the weary and worst, the poised and perfect that have got it all figured out. But where my Lord walks, there follows a wake of peace. The air doesn’t dare stir in His presence without permission. Brushed by grace and mercy, people stop to stare, drawn by His irresistible love, even if they don’t know why. I smile because I do know why, and grab His hand a little tighter. Confident in only one thing. He is mine and I am His.

We approach the carousel and I let go of His hand to search out my baggage. I see it in the far corner, imagining the maze of complicated belts, speeding carts and rough handling the sad little bag has probably been through. I’ll admit my extensive research on this is solely derived from Toy Story 2. As I watch my bag round the first corner I am trying not to covet the ones next to it. You’ve seen them, the hard shiny sides with fancy luggage tags and wheels that rotate and don’t get stuck on the moving walkways. I glance back at Him to see if He saw me longing for the pretty paisley bag and smiled sheepishly because, of course He did. We’ve talked about that before. He knows I don’t like my bag. He gave it to me though so I’ve tried really hard to not complain about it. Because He’s good. So I know there’s a reason He gave the sad, shabby, not chic, bag to me.

I look back just in time to reach out and grab the handle. Which promptly slips out of my grasp and moves out of reach in front of other travelers. Not only is the bag not attractive, it’s heavy. I have carried it around for years and to be honest, the thought of carrying it around forever makes my heart grow heavy and start to race. I suddenly feel far more tired than I was ten minutes ago and there seems to be less air in the room around me. My eyes are glued on the bag now and I’m preparing for it’s next pass. The darn thing is so heavy. This time, I’m going to roll up my sleeves and use both hands. It rounds the curve and I reach out with both hands, give a good tug, and manage to lift it a whole three inches. It bumps up onto the side, spins, and lands back on the belt, now with the handle facing the wrong direction. Okay, now I’m frustrated.

This bag is too heavy, it’s not what I want and now I’m convinced it’s going to be the death of me. I’ve got Someone waiting for me, I’ve got things I want to do and other places I want to be. I want nothing more at this point than to leave it behind and let it be someone else’s problem. But it’s my bag. He gave it to me. I know it’s mine for a reason and He has a plan for me and that particular bag. So I will suck it up, pull myself up by my bootstraps, and get MY bag! I’m formulating a new plan. Leverage. I’ll need leverage. Perhaps a foot on the carousel and I’ll put my back into it! It comes around again and I’m not sure if it’s my imagination, but it definitely appears to be coming faster. I’m thinking of past failures and future attempts; lugging this bag for the rest of my earthly days, and I almost lose my resolve. But, chin up, with a stiff upper lip (whatever that means) I place a foot on the side of the carousel, grab the handle and with a mighty tug, promptly land on my butt. Without the bag.

And now I’m sitting on the floor of the terminal, which has to be tantamount to licking a door handle, and I want to give up. I want to go home. I want to brush the germs off my backside, wipe the tears from my eyes and retreat. That’s when I realize. Twenty whole minutes and I lost my peace. I tear my gaze from the insufferable bag cheerfully careening around the carousel and see Him waiting behind me. He gives me His hand, counts my tears, and says, “Yes, I gave it to you, but you were never meant to carry it alone.”

With a deep breath, I stop watching for the bag and start watching my God. We approach one last time, He leans over and pulls it off the belt and says, “Now, follow me.” I am back where I’m supposed to be, carrying my cross and walking in the wake of His mercy and grace. Moving on to our next stop, wherever that is.

I can’t do this life, and what He has called me to, by myself. All the planning, all the list making, all the hard work, all the pulling up of bootstraps (seriously, does anyone have bootstraps anymore?) just isn’t enough. Yet I try. Over and over. And He lets me. And waits patiently for me to turn around and ask for help.

I see Oldest Son trying to do all the things, by himself. I see Baby Girl wrestling fear like her mama and her baggage. I see Mini Hubby trying to figure out where he leaves off and prayer starts. I see us all believing the lie of SELF sufficiency. So how do I help remind us that we do not carry our burdens alone? This is my idea. A separate slot for Mom & Dad, Oldest Son, Baby Girl and Mini Hubby. My plan is to read through our prayer requests on occasion so we can turn them into praise.

A vintage salesman’s bag off EBay, some hot glue, and my trusty label maker makes a visual to remind us that we don’t carry our baggage alone.
Matthew 11:28-30
28 Come to me, all who labor and are heavy laden, and I will give you rest. 29 Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. 30 For my yoke is easy, and my burden is light.

Identity Lane

I take a trip every fall and it seems every year it is slightly different. Oh, the smells are the same, the colors of the leaves don’t change and the destination is always a welcome one. But, it’s the road to get there that is always changing.

These are my thoughts as we sit in the bus. Hubby and I. As passengers pile on and settle into seats I start to people watch, because that’s what I do. People fascinate me. For example, there’s a young woman opposite the aisle of Hubby and she has wasted no time in pulling out her laptop and ear buds and is checking her Apple Watch; no doubt waiting for her next Zoom meeting to start. As she taps her beautifully frivolous, brand name, high heeled shoe, she radiates anxiousness and I notice the carefully manicured nails that almost hide the chewed corners of her fingers. She glances my direction and I smile what I hope is a warm smile and turn away, acutely aware that I’ve been caught staring. Staring at a younger me. Oh, how I remember the dreams of grandeur of the young IT professional. Fresh into a career, enjoying my first financial freedom and all the temporal possessions that come with it. And realizing that it did not offer an ounce of the security and peace I thought it would bring.

While I reminisce about a thinner, more energetic and selfish me, and our bus finally departs the station, Hubby has started up a conversation with a gentleman in front of us. As is typical of any laborer I’ve ever met, he is telling him about one of the office buildings we just passed. How he worked on it years ago, who he was working for and with and where he used to eat lunch. As his work roughened hand grips the seat in front of him and he laughs at his own dad joke I smile. Not because it was funny, but because I love and appreciate things that stay the same.

I’m distracted by a tapping. Because I’m a mother of three, I instantly know the source to be someone under three, whose feet are conveniently located directly behind my backside. Hence the tapping. On my backside. Thankful for padding, I slowly slide down in my seat, turn towards the back of the bus, and peek my head up enough to see pigtails and a tiny face sticky from the lollipop clutched in her chubby right hand. We commence a game of peek-a-boo and mom appears visibly relieved I’m not annoyed by the tapping. She reminds the little with pigtails to keep her feet off the seat and I ask her where she is from. They’re close and new to the area and I inquire as to whether they have found a church home. Because I am a Director of Children’s Ministry and I very much want to tell pigtails about Jesus. Invitation given and my stomach starting to roll from facing backwards I take deep breaths and turn back around to hear the chiming of my cell phone.

I’ve got mail. Emails to be precise. Regarding the newly formed CTX Alliance. Of which I am now co-president. Did I forget to tell you about that? Very exciting stuff. I quickly scan the emails, because, car sickness. There are details on a video that needs to be made and a couple of upcoming meetings. Oops, and a couple of emails I’ll need to respond to for work. Which reminds me to interrupt Hubby’s conversation about his favorite service opportunity, Ruby’s Pantry, and inquire about when we can coordinate a video recording, drivers Ed, our homeschool field trip up north and the kids’ latest lab testing. Now my stomach is upset and my head starts to hurt and Hubby gathers his stuff to get off. We’ll have to coordinate via FaceTime. Here we part ways for a few days as he heads out of town for work.

And here is where I look over and see the younger me and long for the simplicity. Because selfish me is still very much alive and kicking and right now she is sure that the Lord has made a mistake in all He has called her to be. There is a beautiful weight to wife and mother. I feel a rightness and peace in caring for the day to day, practical, educational, emotional and physical needs of my family. But all these other things? Ministry in the church both to children and their families, Mother to children with rare diseases and all the extras that entails, Advocate for the undiagnosed and diagnosed too late…I am not enough. I do not have enough time, enough energy, enough IQ points, enough patience, enough selflessness to be what He has called me to be. He must have made a mistake. Now I’m frantically looking for a way off of this bus. An escape from the weight. But all I see is a road unknown and I’m sure I’m traveling it alone.

September 5, 2021

Then all at once there is a brightness and a warmth and an inaudible Voice. I am all at once alone, yet the least alone I’ve ever been.

“Here is where I called you first.”

And the Truth of the words rush silent through my head.

1 Peter 2:9-10. But you are a chosen people, a royal priesthood, a holy nation, God’s special possession, that you may declare the praises of him who called you out of darkness into his wonderful light.

I closed my eyes and bowed my head to the overwhelming beauty of Truth and now I can see it. As clearly as if it was right in front of me. How and who He created me to be.

Psalm 139:13-16 For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

There can be no doubt that I am exactly where He means me to be. No mistakes, not if He has ordained every one of my days. But who has He called me to be FIRST, in all its complex simplicity? A chosen daughter of the One True King specially equipped to declare His praises to all whom He places before me. How do I continually forget?

My destination once again reached, I step off the bus into Identity. As a wife, mother, special needs parent, home schooler, family advocate, and ministry leader. But first, and most importantly, as a Child of God. By His grace….that I can do.

An Open Letter To My Faith Family

Dear Brothers & Sisters,

I was saved here 12 years ago now. Somehow it seems like both yesterday and an eternity ago. I spent longer than I should have on the fringes learning slowly on my own until some ladies drew me in and discipled me. Well.

Mini Hubby was a baby when I remember asking them what it takes to become a member of the church. And one wise woman told me, “Well, it’s not like a country club membership. There’s a class to complete to become a Covenant Member so you understand what you’re committing to. You know that a covenant means a promise. And we use the term ‘member’ as part of the body. So, you’re making a commitment to the church body. Like a marriage!”. And, since I was in a marriage, I thought maybe I wasn’t ready for that kind of commitment. I mean, I barely knew most of you and I had heard some terrible things about arranged marriages.

So, I settled on a different step in my faith journey. We dedicated all three of the children. I had come to believe my God trustworthy and understood that they were, indeed, a gift from Him and acknowledged that they belonged to Him. But you. You that I did not know well. You committed to help us raise them in a Christian home. To encourage and support us as we modeled for them (imperfectly) what it is to follow Christ in the hope that they would someday follow Him themselves.

And then, you crazy beautiful hands and feet of Christ actually did it. The kids got sick, our hearts and finances were decimated and you stepped into the mess. You, who I had smiled at in the lobby, rushed to my house to pray with me. You, who had greeted me at the door, pursued me to check on our financial needs. You, that I’d never met, brought meals on procedure days. Dozens of you showed up, worked hard and gave generously to help with fundraisers. You gently and persistently nagged me into attending a retreat that the Lord used powerfully to draw me to Himself and give me elusive peace. You texted with me at all hours of the day and night, wept with me, prayed with me and showed me, and my family, Jesus. In hundreds of ways. Over and over, you helped lift my weary arms and stayed with me through the battles of “worse”, “poorer” and “sickness”. And you didn’t just show me, the Lord used you to show an entire community what it looks like to love like Jesus. And I absolutely believe that you helped me to honor Him in it all.

So, I put a ring on it. I fell head over heels for you that aren’t phased by the mess. You, that step in and step up and obediently give of yourself and your time to something bigger than yourself. Not only our pastor. Not only our elders. Not only our staff. But I committed to all of you precious children of God. And just as in marriage, over time, I’ve seen your bad sides. You’ve annoyed me, disappointed me and frustrated me. You’ve pushed me by your very sinfulness closer to Jesus. In turn, I’ve annoyed, frustrated and fallen short for you. I’ve sinned against you. And if I’m unaware of it, I’ll ask your forgiveness now. But, as iron sharpens iron, I believe us to be better for it. I know I am.

Now, we’ve entered a season as a church body that feels an awful lot like “worse” and “sickness”. And I can tell you I’ll be disappointed if you don’t enter in. I’ll still love you. But I won’t understand. Because you taught me differently. So you have only your less weary selves to blame. If you haven’t been here, your church body has felt your absence and if you weren’t here in the future we’d feel it too.

I absolutely believe that if this Faith Family unites again, truly humbles ourselves in prayer and persistently seeks the Lord’s will, God will use us powerfully again to show our community what it looks like to love like Jesus. After all, this is His church and He loves it more than any of us.

That’s it. Thank you for loving me like Christ. I love you all dearly.

No More I’m Sorry’s

I seem to spend more time reflecting on eternity when I reflect on the passing of time. And I am more aware of the passing of time when I’m approaching a birthday. In this case, mine.

Most people who know me, know that it bothers me when people detest aging and even more when they detest the aged. I spend enough time with people who celebrate their children’s birthdays by the month to think of more time with loved ones as anything but a good thing. Enough time praying my children into adulthood not to appreciate every wrinkle and every grey hair signaling my own. Enough time trying to glean wisdom from the aged to think of their time as anything but a treasure.

Yet, as much as I appreciate and value the moments here and desire to fulfill the responsibilities set before me (especially those responsibilities related to my family), an enormous part of me longs for my true home. At times I feel like this is contradictory and I sympathize with and understand better what the apostle Paul meant when he said, “To live is Christ, but to die is gain.”

To be here, enjoying the good gifts my Father has given me here, and to take seriously the ministry He has set before me is a beautiful thing and not something to desire ending prematurely. But to die, if that is gain, what can that mean?! If it’s to gain, it has to mean that it is better than anything here. That it would, in no way, be a loss. It would mean there is no need for a “bucket list”, no need to do all the things and see all the things before time “runs out”. Because that would somehow imply that the room our Lord prepared for us in our Father’s house is somehow “less than” what we have here. Wouldn’t it?

So, if I war within myself on the subject of death and eternity, how then does one explain it to an eight year old? Mini Hubby, as usual, has had big things going on in his little, developing mind. He knows that we are promised no more pain and no more suffering. But lately, that has not been enough to stop his fear of death and an unknown/unseen place.

No problem, as a director of Children’s Ministry, I’ve totally got this. Hopefully.

We made a list of what we think heaven would not have if there was no more pain and no more suffering. Not necessarily in order of importance.

  • No puke
  • No blood
  • No hunger
  • No thirst
  • No bee stings
  • No mosquito bites
  • No stubbed toes
  • No COVID
  • No rust
  • No hang nails
  • No cancer
  • No car accidents
  • No doctors
  • No lawyers
  • No prisons

(I’ll admit to not thinking about those last three until we were brainstorming. Fascinating.)

But, simply the absence of pain and suffering was still not enough to relieve his fear. So, I suggested we make a list of what we think it might feel like to be there. This time we did it separately. This is mine:

Rainbows! Sunrises and sunsets that can’t be duplicated by man. The smell of freshly mowed grass, baking bread and salty wind off the ocean and into your face. The breath stealing moment of awe at the power in Niagra Falls or the carving of the Grand Canyon. Your hand in grandpa’s. Warm feet digging into cool sand. Sliding into fresh bedding after a hard day. The smell of grandma’s house. Hot chocolate in the cold. That moment when you exchange the rings, hold the baby and cheer for the victory. Reunions. Happy tears. Oh, Lord! That too brief moment of worship in Spirit and truth. When the world melts away, time ceases to exist, and you’re in full communion with the One who made you. For a few seconds. As close as you’ll be this side of eternity. Breathtaking. All of the best things about this world all at once.

Now, Mini Hubby will do most anything to get out of writing. So, his thoughts could be seen as a reflection of his aversion to a pencil, or, they could be further proof of what I’ve experienced with children time and time again…

Child like faith. With less exposure to this world, they seem far less tethered to it than we are. It just seems to make it all less complicated to them.

He wrote simply:

Jesus. No more I’m sorry’s.

And with that, my eight year old grasped heaven with both his sweet little hands. Because heaven includes our sin washing, heart renewing, saint shepherding Jesus, we will not enter with our sin. Nor will anyone else who has trusted in Him. We will no longer hurt others and they will no longer hurt us. And I just can’t imagine a better feeling combination than the presence of our Savior and the absence of our shame. Especially in the hurting, fallen world we currently inhabit.

So, did I help Mini Hubby with his fear of death and the unknown heaven? I’m not sure. Time will tell. But, I know he sure clarified things for me.

And I just can’t imagine a better feeling combination than the presence of our Savior and the absence of our shame.

Or, no more “I’m Sorry” ‘s

“He has adorned you with the gift of grace and adopted you as His child.He has given you His own Word to educate you for heaven; He has opened your eyes so that now you see. By His grace and your cooperation, your soul will gradually develop into a more perfect resemblance to Him. Finally, your heavenly Father calls you home where you will see the angels and saints clothed with the beauty of Christ Himself, standing around His throne and hearing the word that will admit you into their society: Well done, thou good and faithful slave; . . . enter thou into the joy of thy lord (Matthew 25:21).” D.L. Moody, Heaven

For my birthday I’m fundraising for some of those families that celebrate their children’s birthdays by the month. Join me here:

https://www.facebook.com/donate/286126489718958/?fundraiser_source=external_url

Rock of Ages

Maybe it’s because we’ve just experienced the longest stretch of sub zero temperatures in almost a century, or maybe it’s because of all of the Facebook posts of people’s warm climate escapes, but I dreamed of an ocean last night.

Knee deep in calm, blue waters the ebb and flow gave little relief from the glaring sun. At that depth, the water was more like bath water. It was a new to me beach though and I’d spent a considerable amount of time trying to decide if there were any dangers below the surface. Behind me, there were a group of children using drift wood to examine a washed up jelly fish and I was keeping an eye out for any of it’s more fortunate mates. I had no idea where along this coast we were. Could it be shark season here? There were many people, far less cautious than I, that had entered these waters at the same time as I had and were now enjoying their relief from the heat, dipping below the surface and swimming in cooler water further out.

But there I stood, searching for unknown dangers, studying the water and what lay below the surface and looking longingly at the playful couples splashing in the distance. Distracted by all of the noise behind me, I glanced back to see a boardwalk full of people and a beach packed with blankets, umbrellas and countless families. There was volleyball playing, sand castle making, sun bathing and shell hunting. Shops crammed full of souvenirs destined for the landfill were teeming with customers in tiny bikinis and giant jewelry. The smell of fried food from several food booths mixed with the salt in the air and my own sun screen. Every time I looked longingly back out across the ocean, uncomfortable in the heat, my attention was drawn back to the commotion on the shore. So I stood in the in between. Not quite in, and not quite out.

That’s when I heard it. You’ve probably heard it before too. The “Oceans” song. If I closed my eyes I could hear it more clearly…

“You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep my faith will stand”

And there I stood, worried that venturing further, my feet would fail. Certain that my faith would. But drawn none the less. So I stood still and sang along.


“I will call upon Your Name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine”

That’s when it happened. Looking down, I watched as the water pulled back as if Someone had pulled out a giant plug somewhere out in the great unknown. Suddenly, all people and their accompanying sound disappeared with the water and I was left with a foreboding empty silence. The sand beneath my feet had been drawn along with the water and I watched the ground hollow beneath me. My heart raced as my gaze lengthened to the sea bed in front of me. A myriad of things revealed in the stripping of the sea. Some beautiful, some ugly. I stood exposed, alone, in the quiet open. Waiting. And then I heard it. A roar of rushing water. Louder than anything I’d ever heard. I looked up in time to be enveloped by the wall of returning sea. The wave that slammed me into the Rock of Ages.


“Your grace abounds in deepest waters
Your sovereign hand will be my guide
Where feet may fail and fear surrounds me
You’ve never failed and You won’t start now”

And there was incredible fear. Floundering, there was no place for my feet. No up or down, no left or right. No air in my lungs. No solid ground. No foothold.


“Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior”

I vaguely remembered hearing and singing along to the song. If only I’d known what it might look like when I’d asked to be taken deeper! Would I have sung along? Would I have asked for faith without borders?


“I will call upon Your Name
Keep my eyes above the waves
My soul will rest in Your embrace
I am Yours and You are mine”

Then there was a letting go. Not a giving up, but a giving in. I once again closed my eyes and heard You call. But this time, I called back.

Wherever You call me, Lord.

Then I woke up. To the quiet peace around me and in me. Grateful to keep my eyes above the waves, I was reminded of my favorite Charles Spurgeon quote:

“I have learned to kiss the wave that throws me against the Rock of Ages.”

I don’t know that I’ve learned to “kiss” the wave of special needs children. I still pray earnestly for healing. But I’ve certainly learned to be grateful for it, and what it has accomplished. I am far less distracted by the people and the commotion on the shore. Lord knows it has never been more ridiculous and frivolous than it is now. The things of the world still appeal, but don’t pull like they used to. I’ve seen them fade in comparison to the eternal. I am no longer terrified of the unknown. I’ve seen what lies beneath the surface and experienced the grace hidden there. I am no longer standing in the in between and there are others that are “all in” beside me. Now we collectively beckon to those stuck in the in between. We help each other on the long days when the persevering is hard and celebrate all the victories in between. On the hard days I’m content to wade in the deep waters surrounded by these brothers and sisters and on good days… I’m walking upon the water with my Savior and there is no earthly joy that can compare.

Who needs a warm weather destination anyway? This morning, I just spent a little longer snuggled into blankets and basking in the warmth of God’s promises. I will, however, still need a coat today.

Good Gifts

There is something special about being seven that makes my kids believe in magical things. Each one at that age has sprung a last minute Santa list on us that has included the impossible. Mixed in with Oldest son’s requests for a myriad of Pokemon and pasta was a request for his baby sister not to cry. Baby Girl, in the throws of her only girl-like obsession, handed over a one item list on Christmas Eve for Pixie Dust. This year, Mini Hubby asked for a turtle, knowing full well that mom does not allow any critters in the house that don’t have fur. There must be something about being seven that makes one willing to ask for the impossible.

The funny thing is, even though none of my seven year olds got what they wanted, they all loved everything they ended up getting. Watching Mini Hubby open his Lego gifts and spend an entire day putting together several Super Mario courses with a joy only surpassed by his focus made me think about the many things I’ve asked for, and not received. And how good it has been.

I don’t know about you, but somewhere along the way my Heavenly Father not only took my entire list of requests but also much of what I’d thanked Him for, and gave me something drastically different. I handled it with far less resilience than my seven year old children. I had this beautiful picture in my head and heart in which we were a successful, healthy, family of six. You know, comfortable home, sizeable savings account, honor roll students, good life insurance, new cars, weekend sports tournaments, warm destination vacations, promotions, the occasional cold and basically, nothing we couldn’t handle. On our own.

There was the problem, wasn’t it? My Father only gives good gifts. And a good gift does not include one that leaves me unaware of my daily, moment by moment need for Him. So, He mercifully gave me what I needed. Only, at the time, it didn’t feel like mercy. Children with a genetic disorder and the financial devastation that comes with a medical crisis felt more like crushing disappointment and pain than grace. Less like a gift and more like punishment.

A good gift includes something that makes me more into the image of my good Savior and less into the image of what the world defines as good.

So, sitting and watching my family open Christmas gifts this year I was overwhelmed with the good gifts I’ve been given. Some days, I still don’t want them, but by His grace, most days I am at least grateful for them. Grateful for the way Hubby and I are learning to plan for the future, but live in the grace for today. Grateful for the need to wake every day and surrender my family to the One who loves them more than I do. Grateful that He has not only used every one of our hard gifts to show us how loving and faithful and kind He is, but also to show us how everything else we’ve desired in this world pales in comparison to Him.

Today I’m thinking about you all. I’m thinking about how so many of you have gotten hard gifts this year. I’m praying that someday soon you will be able to stop grieving the gift you wanted, but didn’t get. I’m praying that you will be able to see, although dimly, how the gift you have is being used (If you are Christ’s) for your ultimate good and God’s glory. I’m praying for your perseverance in the hard things, but I’m also praying that you will find joy in the gift you didn’t ask for. Though 2020, for many, has been much more like walking on Legos than getting the coveted pet turtle, I’m praying 2021 will find everyone picking up all the sharp pieces and discovering what our Lord intends us to make with them with the same intense focus and joy as a seven year old that believes in the impossible.

Merry Christmas!!

James 1:17 Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow.

Matthew 7:11

If you then, being evil, know how to give good gifts to your children, how much more will your Father who is in heaven give what is good to those who ask Him!

Full of FORTY years

You guys!! I’m so excited for my birthday this year. Why? Because I’m going to be FORTY! The big 4-0. Not the new 30, but a full forty years!

I’m pretty bummed that this whole pandemic thing will seriously impact any real celebration but I suppose in light of the big picture, not celebrating me is a relatively small thing.

And now you’re wondering if I’m being sarcastic. I’m not. But I wasn’t always excited about milestone birthdays. I vaguely remember impatiently waiting for my 18th birthday and the independence it signified but after that I must have greatly matured in patience because I don’t remember counting down the days until I turned 30? No, this celebrating of years passing is relatively new and I suspect the Lord, and my children, have something to do with it. Or more accurately, the way the Lord has used my kids to teach me the value of years.

When we received the kids’ diagnosis, one of the first things that hit me in the gut was reading the case studies and seeing the lifespan of untreated CTX patients. I think most parents realize, in some remote part of their psyche, that there is a possibility of out living their children but there is something about coming face to face with that reality that takes a parent’s breath away. Whether we consciously think of it or not, we have plans for our children. We might not have planned our daughter’s wedding, or thought of names for our grandchildren, but we wonder if little Johnny with the great fine motor skills will be a mechanic like Dad or if little Jenny with the flare for arguments will be an attorney like grandpa. We at least plan for them to have a life full of years, even if we don’t map out said years. We take if for granted that they will at least see the years we have seen. Or at least I did.

It was when I started thinking about the years my kids could miss that I truly started celebrating the years we have. The years we’ve been given. I started remembering something….

Genesis 25:8

And Abraham passed away and died in a good old age, old and full of years. And he was gathered to his people.

Full of years

I started to think not about the time I’m losing, the things I’m losing, but about what I’ve gained. That the years are full of days and days of minutes and minutes full of moments that have created memories and character and lessons and wisdom that make up…. a lifetime. Which means, the more years I’m given, the more I get to celebrate.

April 22nd, I will celebrate forty years FULL. Full of laughter, tears, new adventures and less fear. I will celebrate gained peace, wisdom, weight and even the lines around my eyes. (Incidentally, I will NOT be celebrating gravity). Because I haven’t lost a thing (Nope, not a pound). Even the moments, days, and a couple of years in which I thought I lost the most, I gained. I might not have been able to see at the time, but even those years of loss were FULL… of hidden blessings.

Now, present circumstances considered, I don’t see much chance for birthday presents. But that’s okay! Why? Because, I already have the greatest gift of all. It’s a gift I open anew every morning. The gift of the Gospel. Every morning I am able to fully embrace the day, yet hold it in open hands. Whether He gives me another forty years, or calls me Home that day, I can rest in the knowledge that because of the atoning blood of Christ Jesus I know there will be no death for me, not even when He determines I’m full of years. I’ll celebrate that gift this Easter Sunday… and will wait to celebrate 40 years when I can do it with cake!