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.

Birthday Suit

Trigger Warning!

If you fear aging, or vague references to female anatomy, this blog post may not be for you.

If, on the other hand, you are brave and have a sense of humor, forge ahead!

Today I’ve turned 38. I’ll wait for the applause to die down.

I know, big stuff, right?! Believe you me, I’m as surprised as you are. (This is even more shocking for anyone that spent time with me as a teenager.)

Unlike some people, I’ve always really enjoyed my birthday. Even as I’ve gotten older. Maybe it’s the cake and presents. Maybe it’s because I value life a little more than I once did. Kind of strange, but I even love the lines by my mouth and eyes that prove years of laughter. Even my many scars come with great stories. I truly desire the wisdom gained by experience.

Now, this doesn’t mean that I wouldn’t take both the 18 year old body as well as the wisdom if given the opportunity, but since I live with a teenager it is very evident to me that one cannot have both a youthful body and wisdom. What I am saying is, that normally I’m very content with the trade off.

Now, all this to say that this is the first year I may have freaked out a little as my birthday approached. I believe it’s completely warranted but I’ll let you decide what you think.

For the past several months I’d been experiencing pain on my left side. As there was a lull in the kids’ medical care, I decided it would be a good idea to get it checked out. After a couple ultrasounds, a CT scan and plenty of bloodwork, it was determined that I had a cyst that needed to go, along with some girl parts that were no longer required (Congratulations, you survived the vague female anatomy reference). After some watchful waiting and discussing and a lot of sitting on the couch with a heating pad we decided laparoscopic surgery was necessary. I’ve had a few surgeries over the years so this was less upsetting to me than it was to Hubby. (Maybe because he knew he’d be mom for a bit?)

Surgery was a same day affair and really went off without a hitch. I generally have no issues with anesthesia and have actually been told I’m kind of a good time while sedated. After a little trouble getting my bladder to shake off the anesthetic, I was discharged and sent home that evening. This is when things sort of went downhill.

I was sitting on the couch, propped up with a half dozen pillows a day later when I started to cough. If you’ve ever had abdominal surgery you likely just winced and recoiled a little. And you’d be right. I drained a couple more glasses of water coffee, soda and juice as I tried my best to brace with a pillow for each cough but as the day wore on, the coughing grew worse. At this point, I am mentally cursing every drug addict that has been part of the opioid crisis that has left me without pain medication after surgery. I’m short on sleep and long on sarcasm. Not a great combination when I call the surgeon’s office begging for a cough suppressant. I may or may not have been a bit unkind when the very helpful nurse asked if I’d tried hot tea, bracing with a pillow over the incisions and a humidifier. She called in a cough suppressant.

Fast forward a couple of days and the cough has turned into the most horrible cough you have ever heard. The very helpful nurse calls and gives me the good news that the pathology of the cyst was benign. Yay God! But that endometriosis was confirmed. (Ha! Tricked you with another female anatomy reference! Don’t Google it. Trust me.) This did not make me any more kind.

Now, I’m gingerly “rushing” around the house to get the kids ready and out the door for school when it happens. The most horrible cough starts up. And this time won’t stop. Literally one after another, until I can’t breathe. My chest is actually sucking in as I’m clutching my sides in a vain attempt to stop the searing pain. I’m pretty sure I’m a goner. When I realize I’m going to throw up. I actually do run to the bathroom and almost make it. Almost. While I’m steadying myself to try to get down onto the floor I’m sucking in breath like a fish out of water. I know at least my eyes are bulging. And tearing. And because it can always get worse, my poor little over worked bladder decides it has also had enough.

So, there I am, gasping for breath, shaking, exhausted, in pain and covered in my own bodily fluids. I give up on the idea of getting the kids to school and stick them in front of the Xbox. I climb into the shower and I start to cry and pray and cry some more. When I’m done, I call the clinic for an appointment.

My sleep deprived brain goes right from the city of Molehill to the top of the mountain. I spend the remainder of the day looking around my house at all of the mess. The overflowing laundry baskets, the piles of stuff EVERYWHERE, the stack of unpaid bills, the children going on 6 hours straight of electronics and am certain that I’m worthless. I am falling apart. I can’t clean, cook, drive, do laundry or paperwork. I can’t even hold my bladder! By the time Hubby gets home I’ve just about taken the train all the way to Crazy town. He can’t possibly be attracted to me. Half my girl parts are gone (Sorry!) and of course I’ll just end up losing the rest of them because, well, endometriosis. Sigh. Hubby does his best to annoy distract me and I make it to my doctor appointment the next morning.

Insult to injury, I’ve accumulated another 4 lbs. Apparently even the most horrible cough and the vomiting are no match for my couch and church lady cooking. Feeling bad for myself, I was texting a sweet friend about my body falling apart and feeling a bit worthless when she re-reminded me of something.

“He can ONLY use a broken you.”

And when I got to the exam room:

I started thinking about how He couldn’t use the put together me. The had it all figured out me. The didn’t need anyone else, I’ll do it on my own me. The whole body works well me.

I started thinking about how focused I’d been lately on how the world saw me, instead of how the world would see Him in me.

This very sweet lady came in next and gently reminded me that I’d just had major abdominal surgery, with a complication of bronchitis. That I needed to give myself, and my body, some grace. Not to mention time. She sent me home with instructions to REST.

So, here I am, resting. In God’s grace. In His presence. And thanking Him for the present of a rather damaged birthday suit. He can work with that.

Multiplied

basket-bread-rolls-fish-750x330.jpgI unloaded the kids’ school paraphernalia out of the back of the van to make room for the two black construction size bags filled with clothes that needed to be dropped off at our local clothing center. I was already fighting a panic attack before I’d even left the driveway.

Before you ask, no, I don’t always panic at the thought of being separated from the clothes I’ve dug out of the bowels of my children’s closets. Nope, you see, the donation was a well timed front for my true destination. Which was giving me all the early symptoms of a panic attack.

I pulled into the parking lot at dusk, wishing it was just a bit darker. Shutting off the van I took a deep breath and opened the driver’s side door, right next to a sweet girl I went to high school with. Because that’s what happens when you don’t want to be seen in a small town. All one has to do is not shower, have a bad hair day, or forget to put deodorant on, and you’re guaranteed to run into someone you haven’t seen in awhile. Every. Time.

Except this time I was showered, my hair was presentable and though I was sweating, I was still okay in the odor department. This time, I had something bigger to hide than poor hygiene. No worries! I have my two bags of donations, they’ll never know what I’m up to. It’ll be fine! Until she kindly offers the services of her husband to carry said bags for me. Still okay! I will just drop the bags and they’ll be on their way. As we walked through the parking lot catching up a bit she tells me they’re headed into the building too, for a community education dance class for the adorable toddler holding her hand. My nervous brain finally processes the pink leotard and leg warmers. My too bright smile masking the new panic as I realize they’re headed in the same direction I am.

I drop off the bags, say my goodbyes, and head back to the safety of my van. That’s it. I’m not doing it. I even start the van again before I realize I don’t have a choice. The refrigerator is as empty as our bank account and pay day isn’t for three more days. This is when I start to think I’m suffocating. That someone has snuck up and sucked all the air out of my van and caused this crazy fear to grip my throat. I jump back out of the van, sucking in deep breaths of air. You know the kind. In through the nose, out through the mouth. I stuff all that fear back down to wreak havoc on my stomach instead and jog to the entrance of the food shelf before I can change my mind… again.

That’s right. My super secret, anxiety provoking mission is this tiny little grocery store replica tucked into our community center. I step quickly inside and take a seat with my back to the front door. I fill out the required paperwork and wait for my number to be called. The worst part seems to be over, as far as anxiety goes, but now I’m battling a new fun thing. Shame. I can’t even meet the eyes of the sweet ladies helping me. What I really want to do is curl up and cry. Then, I want to explain why I’m here. Then I start a running dialog with God on why I’m there.

How did this happen?

I did all the right things!

(Whine. Whine. More whining.)

Just as the tears start to win, a lady from the desk comes and stands next to me. It takes me a minute to figure out what she’s saying. And when I do, I’m a little confused. She’s asking about my purse. I think she likes it? I struggle for a minute to remember that I had inherited it from my mother’s closet. I told her I’d considered it a step up from the diaper bag I’d been carrying for what seemed the last 12 years. She laughed. I laughed. And I finally looked into her eyes. Where there was no condemnation, no pity, just kindness. Once she had my attention she started showing me the “ropes”. That it’s just like grocery shopping, only there’s limits listed on the signs. When you’re done, you bring your shopping cart to be weighed to “check out”. And then there’s a very sweet gentleman that will help you carry your things to the car, or you can pull up if there’s room.

As we’re loading my bags, in full cover of darkness now, I still take a few glances around hoping I haven’t been spotted. I thank the volunteer for his help and make a quick exit.

It occurs to me on the drive home that there is something probably wrong with my reaction. That though we’d routinely supported the local food shelf in the past ourselves, I had quite obviously had a few misconceptions not only about the “kind of people” that used it, but the way it was run. As the days and weeks passed, I became more and more convicted of my pride and self righteousness.

As the months wore on it became more and more clear that my faithful, thorough, relentless and loving God was totally committed to purging me of some of these blemishes of my character. Trust me, by the time we’d sold anything with value, come perilously close to losing our house, borrowed from our parents to get our daughter to the latest specialist and still had to dig through the change in the van to pay for the hospital parking fees… all semblance of pride in our circumstances had pretty much evaporated. Everything I have is a gift.

Now, this has been a couple of years ago now and God is continually chipping away at some of these ugly parts of me (which can be depressing) but sometimes I have to look back to see how far He’s brought me.

This week I was reminded of this day when I was feeling enormous guilt. Why? Because we bought new appliances. Like, brand new and delivered. There was a time I wouldn’t have truly appreciated them. A time I would have been the most excited about the way they looked and telling everyone about them (And now, as I’m typing, I realize I’m telling everyone about them. 😅 But in a totally grateful, praise be to God for His provision kind of way, right?).

I wouldn’t have blinked an eye at the invoice or agonized over what this money could do for someone else; where it might be better spent. I wouldn’t have thought long and hard on if I truly NEEDED them or not. I certainly wouldn’t have waited until only one burner on the stove worked and the dishwasher was continuously leaking before trying to replace them. And that crack in the sink? That wouldn’t have lasted a week, never mind three years!

Now, I’m not saying I don’t still roll in the mud of pride and self righteousness. That I don’t still care far too much about how my life “looks”. That I don’t regularly hourly need to be washed clean by the blood of Christ. But, every once in awhile I’m reminded that I’m a work in progress. The key word there being… progress!! I may not be who I want to be, but I’m not who I once was! Praise God!!

ef671dea865e9b7c31e033f5d1df6a7b.jpgIn celebration of the gift of another year of sanctification, 😉 I’m asking anyone that might be considering a card or gift for me to instead support our local food shelf. They were not only there when we needed them, but they showed more kindness than I’d imagined. Let’s help Five Loaves continue to multiply.

5 Loaves Food and Clothing

 

Friends in low places….

There’s this thing that happens when your world gets a lot shaken up. When the ground beneath your feet shakes, gives way, and everything kind of starts to fall down around your ears. Some people are going to run. These same people may have been there from the beginning. May have helped you build all those crumbling things. But when things really got scary, they headed for safer ground. They may have glanced back over their shoulder, hearts in their eyes, but they half jogged away. Now, I’m not blaming them. Really. I’ll explain why later, but first I want to tell you about the others.

Then, there are the other people. The ones on the outskirts that happen to hear the roar, that even as the ground is giving it’s last rattle, are already calling out to you in the rubble. The ones that rush forward, roll up their sleeves, and start digging through the debris. When the dust settles a bit and the Son starts to break through in rays of light shot through darkness and you start to stumble your way out of the mess, they meet you with open arms. They brush off some of that dirt to clear your eyes and start feeding you living water. You start to catch your breath.

And these people, they stick like glue. Even as remnants of the past are raining down on your head, they drape an arm across your aching shoulders and walk beside you through it. As the aftershocks rumble through what’s left of your life and you’re standing shocked and overwhelmed, they start picking through what’s salvageable, identifying what’s not, and arranging for what’s needed. They work tirelessly to meet your needs, physical, emotional and spiritual. The labor of their hands surpassed only by the labor of their hearts.

They don’t stop there. Remember, like glue. They stand ready to help you rebuild. They point out the defects of the previous structure, and make sure, this time, you’re building on solid Rock. A firm foundation.

We’re rebuilding, from the ground up. It’s quite a process. One, I’ve heard, that takes a lifetime. We’re learning that these people are part of the process. Strategically placed, by a loving Father, to bless us in ways we’d never imagined. We thank God for them daily. For their encouragement, support, prayer and almost constant help.

And here’s why I don’t blame the ones that ran. We can make terrible friends. If you don’t know and follow Jesus, there’s really no worldly reason to stick by us.

What’s happened to us is likely one of people’s biggest fears and something they’d rather not come in contact with. Not that we’re contagious, but we’re a reminder that hard things happen. Could happen to them. Something they’d rather not think about. People who love Jesus tend to have less fear of the unknown and more trust in a loving God to get them through whatever He allows for them.

Also, we often give little back. Put plainly, we’re needy. We have seasons when all of our energy, both physical and emotional, necessitates our total focus on the kids. That leaves little time to invest in others and begs people to invest in us. Unless you are giving of your resources, time and energy to follow Jesus, you will quickly tire of these things not being reciprocated. Frankly, there’s not always much to be gained by caring for us.

And recently, it’s come to my attention, that it’s just plain hard to do life with us sometimes. So, if you ran the other way. I understand. You’re forgiven. Completely. Because I’ve been forgiven. And because I can’t say with all certainty, that I wouldn’t have done the very same thing before I’d been saved by grace myself.

Now, just one more thing….

Dear friends that stick with the power and love of Christ,

Thank you. And stop it. No, not the sticking. We sincerely appreciate that. But the “survivors guilt”. When the ground isn’t actively shaking beneath our feet, allow us to love and care for you in any way we can. This is the truth in love right here. It is a kindness to help us not only keep our gaze up, but out. When our entire focus isn’t absolutely required for some major thing we might have going on, it’s not healthy for us to be focused on ourselves. We welcome those seasons! And we welcome the opportunity to talk about the “normal” difficulties we all encounter in a fallen world. Please don’t let our different circumstances separate us. We are, after all, headed in the same direction. None of our journeys are easy. And we might not be able to help at that moment. But what a blessing for us if we are! And if we can’t help in a tangible way, we’re privileged to pray! One of the greatest gifts God has given us is a community of people who not only grieve and rejoice with us, but the ability to come alongside and grieve and rejoice with them. We want to be part of both. Even if our grief and joy may look a little different. Allow us to be your friend in your low places (and the high ones too). We’re eternally grateful to have you in ours.

Love,

The Blanchards

In The Garden

In-the-Garden-thumbnailLately I’ve been feeling bad for whoever sits next to me in corporate worship. I never used to. For years, I came to church and sat and stood at the appropriate times and even sang quietly with the rest of the congregation. Somewhere along the line though, it stopped becoming simply singing and became worship. I don’t know how it happened. Really, one day I was reading the words off the screen, keeping my volume to a very respectful whisper and my hands and emotions nicely contained. Then, the next thing I know, I’m standing in the front row, swaying to the music, eyes closed, arms up and “singing” like no one is watching. You see what I did there with the quotation marks? That’s because I can’t sing. This is not me practicing humility. This is me confessing. I can’t sing. At all. Which is why I suddenly feel rather sorry for the people close enough to hear me. This is also why I’m thankful for our more modern service with it’s music equipment that drowns out much of my noise. But, as my family will confirm, my concern for the ears around me hasn’t discouraged me much. Why? Because I was made to worship. I know, it may not SOUND like I was made to worship, but I was. You were too! I understand your confusion as this truth had once eluded me too. I’ll direct you to my first glimpse for a more detailed explanation but here’s a condensed version if you’re short on time.

There was once this fiesty, fire cracker of an old woman that used to walk barefoot through her acre large “garden”, her hair in militant rows of tiny curlers and her apron pulled up as a make shift basket. house-and-rowsBut it wasn’t her appearance that would puzzle me. She seemed to fit in that garden like she was born there. Her first toddling steps squishing dirt up in between her toes. Even at her advanced age she seemed to sway along with the stems as she threaded herself between the rows. And the fruit of her labor gathered in the folds of her apron seemed to bare witness to the fact she belonged there. What seemed to me to be at odds with the whole scene was her “singing”. It was how one could locate her among the produce. You certainly couldn’t miss it. In fact, I’d venture a bet that dogs on neighboring farms a couple miles down the road could lead you straight to her. It was less like singing and more like high pitched yelling. But as long as she was in that garden, she was singing her favorite hymns. When asked, it has been reported that she said, “If God didn’t want to hear me, He’d have made me mute.”. It’s taken me a few years but I’m finally starting to understand. That brilliant lady knew a thing or two about worship. She had figured out that it wasn’t the quality of the voice raised in praise, but the heart beneath it.

“There are some who cannot sing vocally, but perhaps, before God, they sing best. There are some, I know, who sing very harshly and inharmoniously – that is to say, to our ears. Yet God may accept them rather than the noise of stringed instruments carefully touched…When praise comes from the heart, who would wish to restrain it?”

Charles Spurgeon 

I don’t wish to restrain it. Not only because it pleases God but because I’ve found it’s as close to the garden as I can get here. (Now, I don’t have an actual garden. I may have inherited this sweet lady’s voice, but not her ability to make things green. Also not humility. It is a well known fact in my house that the only things I can keep alive have heart beats. Which really, I think should count for something??)

I play worship music in my van, in my kitchen, in my closet before prayer and as I “sing” the rest of the world kind of melts away. It’s just Him and I, walking through the garden. In the garden I’m free to rejoice in His presence, sing His praises and focus solely on Him. And in this place full of distractions, trials, pain and loss, I don’t want to waste a precious second of these opportunities to worship. My soul longs for His presence!

So here is my apology. Sorry, not sorry! And my best advice. Lift your voice and arms like you were made to worship (you were) and dance like no one is watching (or for an audience of One). Because, like a wise woman once said, if God didn’t want to hear you, He’d have made you mute.

Here, try it with this song. You’re welcome! 😊

Plans, Preparation, Predictability… and Purpose.

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I just made an appointment for our sixth surgery in eight months. “Our” meaning our family.  More specifically, there have been two for oldest son and this will be the fourth for baby girl.  I’m not really digging it. Once again, this wasn’t part of my plan.

I really like plans.

Things like predictability and preparation are some of my favorite things.  No joke. I really enjoy schedules,  lists, calendars, highlighters, etc. I get super excited when I get to use my label maker. I know,  some of you are totally cringing right now.  You are likely those people that do crazy things like ride in hot air balloons, jump out of FLYING planes or off of perfectly good bridges with rubber bands on your ankles.  It’s okay, I don’t understand you either.

Yup, you can take your mud runs and your “spontaneity” and I’ll be perfectly comfortable with a nice boring day,  free of chaos, reading a great book.  If this life thing were up to me, that would be my plan.

But it’s not.

So my flesh (every extra fluffy pound) often sits in waiting rooms or on route to appointments re-rearranging my mental schedule for the hundredth time and crying out for just a little bit of boredom. A little less crisis.  My flesh wants to be the Mom that’s at home instead doing the laundry, putting together a nice healthy dinner,  looking up birthday party ideas on Pinterest,  volunteering for ALL THE THINGS, welcoming everyone home to a nice, relaxed, stress free house and never dropping any of the balls. (I am constantly dropping balls. Very frustrating.)

I feel like it’s a good plan. I also often feel like I could really do some amazing things with God with this plan. Just think of how big my mission field could be! I could do the mission trips and serve in all sorts of ways I just can’t right now. I could be that child of God that is running around with the Good News in far away places instead of running around chasing my tail, struggling to serve just the few in my reach. I’ve tried to convince God of the brilliance of my plan but either this sounds a lot like bargaining and whining to Him or He is just pretty confident that His plan is still better.

So my faith will keep reminding me that I may have plans,  but God has a purpose.  On days like today when my flesh just really, really, wants a little boredom, I will instead cry out in prayer and ask my merciful Father to show me just a molecule of His purpose in all of this. To help me re-remember that His plans are for my good and His glory.

Because my best laid plan has nothing on His purpose.

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Fighting For Balance

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.