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.

Sometimes I’m wrong…

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.

So.

Much.

Puke.

Strep throat.

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. 😉

Surgery and Procedures: A Guide For Caregivers

There are oodles of articles, brochures and pamphlets on how to prepare a child for surgery or procedures. I know, I’ve had the pleasure of reading many of them. They’re extremely helpful. What I’ve found over the last few years though, is that they’re not extremely helpful in preparing the adult that is accompanying and caring for the child. So, as we’re headed in for a procedure today, I thought I’d provide my own list of things I’ve found the most useful to know as the caregiver accompanying a small person for what can be a very stressful time.

What To Bring

The hospital should have what’s called a “Child Life Specialist”, or something similar to keep your child entertained during the endless waiting and to lessen their anxiety with activities and electronics. You’ll likely have your hands full doing the same. But, once they’re wheeled in, you will find yourself with plenty of time on your worrying hands.

First, bring your people. Family, friends that are family, church family, whatever. Bring a person that can run for food if you need it, grab some tissue if you need it, enable you to run outside for some fresh air and most importantly, distract you when the hands on the clock don’t seem to move. These people should also ideally be positive, easy going and good at waiting. This goes for a hospital stay if you have one afterwards too! If you’re looking at an extended stay, come up with a schedule ahead of time. I’d really recommend this if you have a large number of people so that both you and your child are well supported, but not overwhelmed.

Bring easy brain activities. I wouldn’t recommend any difficult novels, studying, or important work you can’t make mistakes on. I’ve often wished I knew how to knit. I think that would be a perfect waiting room activity. My personal recommendations are adult coloring books, your Bible, and conversation.

I’d highly recommend dressing in comfy layers. Temperature often varies drastically by the room you’re in and no matter the procedure or surgery you’re waiting on, it’s going to be a long day.

Bring a cell phone charger and let family and friends know ahead of time you may not be able to update at regular intervals. Depending on where you are in the hospital will depend on what kind of cell phone service you have.

On Your Way

On your way to the hospital, allow extra time to stop for your favorite coffee/ tea/ beverage and several snacks. For you. Since your little one likely can’t eat anything, you’ll feel bad consuming a large breakfast in front of them.

Or, if you’re like my husband, maybe you won’t.

But, either way, there are usually few decent food options in the waiting room, if any, and you may not want to make a run for food for fear of missing an update. Also, a muffin from the grocery store is far cheaper than the $5 dry and tasteless muffin wrapped in cellophane you’ll likely get at the hospital.

While You Wait

Once they’ve been wheeled away from you and you’ve said your very brave goodbye, you will get to experience the phenomenon of “hospital time”. The clock that, at times, flies by or stands completely still.

Now is when you want to take any opportunity to eat, drink, and use the restroom. I would advise against too much of the waiting room coffee, however. I still don’t understand why they provide every poor quality diuretic known to man. Not only does the caffeine not help anxiety, but about ten minutes into waiting I’m already too worried about missing an update to use the bathroom. And the only thing worse than anxiously waiting to hear how things are going, is anxiously waiting while simultaneously holding a full bladder.

This is the point I’m currently at. Doing my “busy” stuff, having a snack and trying not to watch the clock. Whatever you do, sit somewhere you can’t see a clock.

Sometimes, depending on the hospital, you’re back in the waiting room and sometimes you’re waiting in the pre-op room. I actually prefer the waiting room, if you have an option.

Here’s why. Look around you. Nothing helps distract you like connecting with other families in a similar situation. One of my best waiting room experiences was an all day affair during which two of my children were having surgery at the same time. Why? Because while I was waiting I was able to talk to another brave, waiting momma. This sweet lady was several states from home, by herself, with a medically complex kiddo while Dad was at home caring for their other young child. She’d been staying at a hotel for a week to have access to specialists, testing and surgery not available where they live. Things practically in my backyard that this particular anxious momma can forget to be grateful for.

Finally, try not to panic about time frames. You are literally at the mercy of the schedules of dozens of medical personnel. It rarely goes according to the schedule you’re given. If you’re worried, never be afraid to ask someone. They’re used to soothing worried parents, especially in a children’s hospital.

Do you have any helpful advice you’d add for caregivers? Please comment with it below!

Know a caregiver concerned about an upcoming procedure or surgery? Feel free to share!

Do you have a procedure or surgery coming up for a loved one that you’d like prayer for? I’d be happy to pray for you.