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!

Dissection of a servant heart

I’ve always loved to read, though the content has changed significantly over the years. One of my favorite authors is C.S. Lewis and though I return to his books often, I’ve recently found a new love of biographies and auto biographies. My favorites happen to be of some wonderful old saints like George Mueller, Amy Carmichael, and Charles Spurgeon. I read through the lives of these incredible brothers and sisters in Christ and they both encourage and convict me with their faithful perseverance and joyful service to our Lord. If you don’t know them, for the sake of this blog, you need only know that the size and scope of their ministries was only surpassed by their great faith and reliance on their God. Which resulted in great Kingdom impact.

And it never fails when I close the book for the night.

I want to serve like them. I want to minister to orphans. Great multitudes of them (or maybe more realistically, foster children).

To save exploited children and show them the love of their Father.

I want to tell of the Good News to the masses. The underprivileged, forgotten, broken, hurting, starving masses.

I want to do big things in response to the big Love I’ve received.

Don’t misunderstand. I also think that sometimes the big acts of service are the small ones too. I find great joy in loving chatting, giggling, exasperating teenage girls in my youth group, wiping snotty button noses in my Sunday school class, sorting dusty, dirty cast-offs for a rummage sale and even scrubbing toilets and windows in the house of my Lord.

But as I read these biographies I found myself wondering if these beloved saints ever wrestled with where they were called to serve? It seems to me that they didn’t. And it makes me wonder if this is my own peculiar stubbornness.

I sometimes look at our situation with special needs children as an obstacle to service. How am I to do all of the things I want to do when there is a constant stream of paperwork, medical bills and appointments.

If only I didn’t have one fire after another, Lord, the things I could do!!

Then I went to an amazing conference with Hunter’s Hope. An organization that serves families affected by Leukodysytrophy. It was while sitting in on a prayer meeting, fever raging from a kidney infection, that the Lord began to work on my heart.

The chairs were arranged in a circle with Kleenex boxes strategically placed about the small room, as couples made their way in from breakfast. In varying stages of grief, these beautifully brave parents and caregivers shared their deepest, most authentic, genuine, hurts, fears and even heart breaking anger. Then, they collectively placed their burdens in the hands of their Lord, asked for the strength and wisdom to glorify Him throughout the conference, and closed in praise and gratitude for the fellowship and provision given to make the conference possible.

Then, since I was feeling so ill, instead of making connections and asking questions I was forced to just listen and observe. (I tend to do a “doer”, so trust me when I say this was frustrating and decidedly disappointing. NOT what I’d planned.)

What I SAW was HOPE. I saw these same hurting, grieving, struggling servants shining light into what I’ve experienced to be some of the darkest of circumstances.

Because there were many in attendance who were trying to navigate the terminal illnesses and deaths of their young children… without Christ.

I saw these unbelieving families look upon these other, broken parents and wonder at their peace. At their ability to find joy. Wonder at their belief that their God was still good. And it made me wonder…

Did those parents of the prayer meeting realize how well they served their Lord? In and through the pain and daily struggle for peace. It was then I thought of those who God had used to serve me.

A pastor, who having come to Christ at the grave side of his infant daughter and a friend with a daughter with MD would be the only ones I could hear and believe when, in my own grief, I could not believe or hear God. And I suspect these precious families will one day, if they haven’t already, be given the opportunity to serve in a similar way. To be able to say, with confidence, to the similarly afflicted,”He’s still good. And He still loves you.”.

Then, I saw these same hurting parents present all of the amazing ways God has used and purposed their great suffering to ease the hurts and suffering of future Leukodysytrophy families. Dozens of organizations founded, books written, laws enacted, lobbyists created and activists activated to go out and comfort with the comfort they themselves have received.

And then I think, have I truly been willing to serve where He has placed me? In the relentless paperwork, medications, therapies, insurance battles, waiting rooms and fear filled future. EVERY morning when I surrender these children anew, have I surrendered willingly myself to serve where He obviously wants me. And am I doing it as cheerfully and joyfully as I would serving the next project at church?

And the answer is humbling.

Not always.

These last couple of weeks especially I’ve wanted to serve pretty much anywhere but where He has me.

I still want to serve in ways that are more appealing to me. Would still honestly much prefer serving widows and orphans, the homeless and persecuted. Would even cheerfully welcome the opportunity of a great inheritance to pour into God’s kingdom if you twisted my arm.

I’m far more comfortable serving from a place of my own abundance, than a place of my own great need.

Perhaps I do NOT yet have the willing, servant heart I thought I did.

The Other Mothers

This mother’s day is a bit different than the past four. In a good way. Or a mostly good way. It started a few days ago when Oldest Son and Baby Girl had their latest appointment in neurology.

Neurology hasn’t been my favorite. This place of MRI’s, EEG’s, spinal taps, bloodwork and few answers but more questions makes my heart race nervous in the parking ramp. That day though, kids touched noses, hopped on one foot and images stayed the SAME. This momma breathed deep, exhaled grateful and smiled to her eyes for holding steady. Steady hands, steady legs and steady labs. This momma stayed up late overflowing grateful. And guilty. Heart rejoicing and heart weeping. Oh, she sang praises on the floor of her closet, wrapped warm in undeserved grace. Then prayed hard for the other mothers.

All of this mothering is hard. SO hard. But there is some mothering that hurts more than others.

The kind of mothering that happens when you lose a child to mother. I saw that this week. Prayed for that momma and hurt for that momma as she stood in front of a school she no longer had a child at. What does one do when you have a lifetime of love for that child and the lifetime is far too short?

The kind of mothering that happens when a child goes their own dangerous way. Prayed for one of those beautiful mommas this week too as she watches and prays and waits. Waits for that child’s saving, fully aware that she can’t be the one to do it.

The kind of mothering that happens when one does all the things to be a mother, but hasn’t been given the gift of the child. I prayed for one of these precious ladies too. For she has helped mother my own babies. Will continue to pray that she understands the beauty of mothering whatever children God gives you, no matter what that looks like.

And finally, the kind of mothering that happens with a special needs child. These other mothers weighed heavy on my heart this week. Because not all of them get to hear good, steady, news.

These other mothers stare fiercely brave into the hardest things. Things they won’t tell you. But I will. So you can pray for them too.

Their sleepless nights last far longer than those infant years. These warrior mothers navigate hospital halls, insurance denials, government paperwork and medical equipment. Always advocating, always fighting. They have grieved a diagnosis, mourned a prognosis. And if it’s a degenerative condition, they’ll grieve the loss of each ability, one by one, over and over again. And at the end of their hard days, their want to give up days, they might break a little knowing the only break they’ll get is when their heart breaks.

Or, they don’t have a diagnosis at all. Oh, I’m hurting for these other mothers too this week. You see, our diagnosis is CTX. And after years of research, I know about all the mommas before me that knew something was wrong. That did all the things to find the answers. And lost their babies before they found out what they were. I also know that there are likely hundreds of mommas out there right now, praying for this diagnosis and might not get it in time.

You see, I know I’m the momma that’s had a few hard years. But I’m also the one that gets the diagnosis, the treatment, the good doctors and the steady news.

So this Mother’s Day, I’m rejoicing and grateful for good news. And I’m praying for all the other mothers. That they know The Good News. That they find their rest in the only One who can give it to them. And that they know that there are mommas praying for the comfort and strength they need to persevere.

The Gift In The Concrete

The  last year and a half has been hard. Really hard. Watching your once “normal”, healthy, eight year old decline and helplessly standing by while dozens of tests and specialists tell you they don’t know what’s wrong has a way of slowly turning a parent inside out. You know it’s something serious, and you relentlessly pray for answers, but when you get them, you’re still grossly unprepared for the reality of it.

We now have TWO answers and I don’t like either one. The first is called Spinocerebellar Ataxia Type 8. Rare, genetic, degenerative, and would slowly rob her of her mobility over about fifteen years. You can see my blogs, The Dark and Alibaster Jar if you’re interested in seeing where that brought me. The second, newest, is Cerebrotendinous Xanthomatosis. I held it together slightly better (growth?) the second time around. See Hope . Also rare, genetic, and progressive, this one explains her cognitive decline, personality changes, leg pain, etc. The good news is that this one has an available treatment. The idea being to replace what her body isn’t making and pray that we can maintain normal numbers and stop the progression. The bad news is that each of our boys has a 25% chance of having this disorder as well and we are waiting on their genetic test results.

I’ve blogged a lot about the pain, loss, and grief over this journey but He has faithfully brought me through and given me so much love, truth, and hope. Everything I need, when I need it most. Thank you Jesus! The last couple weeks I’ve been struggling through something a little less dramatic. Sadness. The kind of sadness that hovers silently in the shadows of my mind while joy, excitement, hope, love, fatigue, frustration and worry bump around the rest of the space in there, jostling for position. It’s heavy presence is always there. Waiting. Just waiting, for worry or frustration to bump up against it, form an alliance, and squeeze hot tears out of unsuspecting eyes. I’m finding this happens most often when I come face to face with our present reality. Without having a chance to brace myself first.

The other day we were tackling 3rd grade homework when frustration and worry ganged up on me with sadness. We spent an hour repeatedly going over which hand was the hour hand and which hand was the minute hand. Something she had mastered in first grade. Abstract concepts are next to impossible with her short term memory impairment. Twenty minutes later, her newfound impulsiveness led to a screaming toddler and crying 8 year old because she had gotten frustrated, pinched him, and immediately felt terrible. At bedtime, she told me she didn’t want to go to Sunday school because she got confused. There was truly less light in my baby girl’s eyes! By the time I went to bed, I was in tears.

Father, PLEASE! Please don’t let us lose the compassionate heart you blessed her with too! Please don’t allow this disorder to rob her of the ability to understand the huge faith you’ve given her! This heart, this faith, that have been such a source of hope and comfort. Such a gift of grace to us!

Sadness dogged me the next morning and followed me through her occupational therapy session which left her tremor worse, her body sweating and exhausted, and her complaining of the pain in her legs. And as I broke out the Motrin:

“Mom, I’m sad.”

She has a few things to be sad about. “Why are you sad, baby?”

“I’m sad for all of the people that lived before God gave us Jesus.”

Her compassionate heart! But that’s a pretty abstract concept to grasp. Does she really get it?

“I wish He could have helped them get to Heaven too. But I’m sure happy that we were born after Jesus!”

Smiling through tears. “Me too baby girl, me too.”

Tear filled eyes closed and lifted to a bitterly cold Midwest winter sun, being covered in His grace and love, my heart cried out my thanks for a gift so beautiful!

I have little difficulty with the abstract. I’ve been blessed with an exceptional memory. I have no physical challenges. I’m pretty sure I aced third grade word problems involving reading a clock. But, I didn’t know the Gospel until I was in my thirties, and I struggled to understand and accept the love of my Savior for longer than I care to admit. (It really is a kind of illogical love, isn’t it?!) And I’m too embarrassed to disclose how long it took my heart to bleed for those that were, and are, perishing. Her existence in the concrete, the present, has apparently not hindered her faith, or her compassionate heart in the slightest. It begs the question, which one of us truly has a greater challenge?!  He will make clear to her all she truly needs to know, just as He will for me.

Baby girl, you bring that beautiful heart and concrete faith, I will bring the abstract, and we will grow in Christ together!

 


1 Corinthians 12:4-11New International Version (NIV)

There are different kinds of gifts, but the same Spirit distributes them. There are different kinds of service, but the same Lord. There are different kinds of working, but in all of them and in everyone it is the same God at work.

Now to each one the manifestation of the Spirit is given for the common good. To one there is given through the Spirit a message of wisdom, to another a message of knowledge by means of the same Spirit, to another faith by the same Spirit, to another gifts of healing by that one Spirit, 10 to another miraculous powers, to another prophecy, to another distinguishing between spirits, to another speaking in different kinds of tongues,[a] and to still another the interpretation of tongues.[b] 11 All these are the work of one and the same Spirit, and he distributes them to each one, just as he determines.