Well, I obviously think this is a blog worth reading. Grateful for the chance to share about the only One who makes it possible to rejoice through tears!
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.
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.
Have I ever told you I never planned to be a Stay-At-Home mom? It wasn’t what I thought my family would need. I thought my future family would need things like reliable vehicles, family vacations and savings accounts. It turns out my family would need a mom that could devote hours a week to paperwork, phone calls and appointments for a couple of medically complex kids so they could get a diagnosis in one year, instead of the average fifteen. They would need a mom that could stay home and research, fight for answers and fight insurance companies until she got them. Thank God, He knew I was wrong about the career and making money thing.
I was wrong again when we finally got our first diagnosis and I decided to bring Baby Girl shopping for school clothes. At Justice. We don’t normally shop at places like Justice. Because shopping at Justice falls into the same financial category as family vacations. If you don’t have a tween daughter, just take my word for it. But somewhere in my sleep deprived, grieving mind, spending a ludicrous amount of money on Baby Girl seemed like… justice.
So we walked in the door and I said the craziest thing, “What do you like, Baby Girl?”. Two hours later I had agreed to a pile of clothes that not only exceeded our clothing budget (for the year) but also some hard and fast rules I had on 8 year old modesty.
Then there were “the shoes”. Because of Baby Girl’s deteriorating coordination, footwear had been limited to Velcro laces and flat, functional shoes. She did not find flat, functional shoes at Justice. She brought me a pair of the most ridiculous, sequined, flashy, silver platform sneakers… with tie laces.
And I took one look at her hopeful little face, thought of what that doctor had said two weeks before about her being in a wheelchair within ten years… and placed the shoes on the growing “keep” pile. Three years later, we do not believe that first diagnosis is what God has for Baby Girl. And I’m absolutely sure that she didn’t need “the shoes”.
I was recently wrong again. I know, I’m as shocked as you are. I was sure once the kids were all in school, I would be able to go back to working outside the home. We would have things like savings accounts and there would be vehicles we could at least afford to fix. And bless sweet Hubby’s heart and broad shoulders, maybe he wouldn’t have to keep taking all that overtime…
Oh, I knew I wasn’t going back to a career in IT with long hours and longer commutes, but when Mini Hubby started kindergarten this year I was pretty sure a job in the school where Oldest Son was starting High School would be a perfect fit. It almost was.
These last several months my heart grew for kids in tough situations, with big obstacles and even bigger attitudes to overcome. I learned how to better support Oldest Son socially and in academics. And because I had the opportunity to see what he sees of the world on a daily basis (trust me, their world is far bigger, scarier and less restricted than ours was) I know what kind of conversations we need to be having regularly. I also had the chance to work among adults again. I won’t lie, it is far more entertaining than working with myself. I found a whole bunch of new people to love.
There was also puke.
A few times.
The loss of my mother-in-law.
A surgery for tonsils and adenoids.
Some problems with some crucial labs for Oldest Son and Baby Girl, and finally….
The realization that God was sending me home, again.
Usually when I’m wrong, it feels a lot like… failure. I’ve made the wrong choice, my plan didn’t work. It can feel like I’m giving up, letting go or making emotional decisions (“the shoes”). Because I can’t see the full picture. My vantage point is far more limited than God’s. But, in hindsight, it is a joy to see how He purposes my missteps. Redeems them all and uses them for my good and His glory.
Right now though? I still can’t see what He’s doing. And that’s hard. So I’m holding tight to a few of these Truths.
And maybe this song. 😉
It was the sideways glance and raised eyebrow from the pre op nurse that got me thinking. I can’t really blame her for not understanding because prior to life with medically complex kiddos, I wouldn’t have understood either. That they have medical, spiritual and emotional needs and each are just as important to maintaining some kind of balance in this crazy life of genetic disorders.
So, as they wheeled our oldest son out the door into surgery and I was sitting with our daughter in the same pre op room getting ready for her surgery, I explained to the nurse why I brought my thirteen year old son to see his first concert the night before.
I told her Imagine Dragons is his favorite band and his amazing aunt got the tickets for him for his birthday. I explained that he was very concerned that he not miss the last of soccer season, or the beginning of basketball season so this gave us a very small window in which to schedule the eye surgery. (Because, well, thirteen year old boy priorities.) I tell her that this rare disorder of theirs, Cerebrotendinous Xanthomatosis, comes not only with juvenile bilateral cataracts, but with a lot of anxiety. So, I scheduled the surgery on the only date available in between sports and brought him to the concert the night before. He had a great time and, although tired that morning, he was much less stressed about the surgery.
As the blood pressure cuff inflated and the heart monitor beeped I colored with our daughter and explained that for her, Dad spent the night playing Minecraft to distract her. The decisions aren’t always easy ones to make. Trying to balance all of their needs is hard. They are more than just flesh and blood. In the midst of endless lab work, exams, specialists and testing it has become more and more important that we make all of their needs a priority. Sometimes this means ice cream before dinner rewards for copious amounts of blood work. Sometimes it means skipping homework for prayer, not following that strict diet perfectly so that they can eat what the other kids at the party are eating or taking the injury risk for that activity that they love.
We have two medically complex kiddos and this means we have complex lives with complex decisions. And we’re just doing the best we can to meet ALL of the needs.
And you know what? Much later that day, our son was out of surgery, out of PACU and sitting somewhat patiently with us while we were waiting for our daughter to crack open her precious little eyes and the PACU nurse comments on how easy going and patient our kids are. After 12 hours in the hospital neither one were complaining and both were good naturedly trading jokes with us and the staff.
So, we will keep fighting for balance. We know our kids and their condition better than anyone else we come across, no matter their degree. Tonight, one day post op, they’re going to youth group. Because they want to, and it’s just as important as the medication they’re due for in an hour.
I’m not saying we make all the right choices. I’m definitely not saying we’ve got this thing figured out. Actually, we really screw it up sometimes. But, what I’m saying is, I’ve learned that our kids’ needs are complex and go far beyond the physical. I’ve learned that not everyone is going to understand that. I’ve learned that sometimes I will get a sideways glance and raised eyebrow at my decisions. And I’ve learned that that is totally okay. Sometimes I’m right.