Month: June 2016

“For a thousand years in Your sight are but as yesterday when it is past, or as a watch in the night…so teach us to number our days that we may get a heart of wisdom.”- Psalm 90:4, 14

This has quite possibly felt like the longest week of our entire lives.

When Wednesday hit, Hugh looked at me and muttered, “Surely it has to be the weekend already!?”

The moments have absolutely creeped by- most of them painful.

“And the people became impatient on the way…and spoke against God and against Moses, “Why have you brought us up out of Egypt to die in the wilderness?”- Numbers 21:5

There have been times in this journey with our girls in which I stop trusting in God’s steps and, instead, start panicking. I don’t tend to get nervous or weary in the exact moments themselves; it is thinking about the future and more moments similar to these that I begin to feel faint.

“Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; His understanding is unsearchable. He gives power to the faint, and to Him who has no might He increases strength.”- Isaiah 40:26-29

The Israelites had heard.

They had known.

They were given a pillar of cloud by day and fire by night.

Manna in the morning to provide their daily bread.

The Red Sea had literally parted and become dry in order for them to pass.

But those current moments.

Oh, those weary moments.

We have amazing community both near and far. People do their best to love us well and be the hands, feet and heart of Jesus both in word and deed. Yet, people are people and have their own lives and only so much serving can be done. There is a certain point where friends and family simply aren’t meant to understand, I think. And-when you are on your fifteenth crisis of the year, suddenly crisis stops feeling like crisis to both those around you and yourself and you simply get sick of being served.

Am I making sense to anyone?

Even though our drama is not made up- it still starts to feel like drama and you just get over it.

I know He says His plans for us are good yet,

“Why did You bring us up our of Egypt to die?”

There is not a way to explain what sickness looks like in our home. When your children cannot sit up themselves, every single cough requires assistance. We have spent hours and hours and hours, both day and night, watching Ally and Bailey Grace suffer greatly this week. They have coughed until they have coughed up blood- numerous times. We have gingerly given them pedialyte through their gtubes by a small syringe- only to have these small amounts coughed up. We have watched nurses try time and time again to find a vein that hasn’t been blown- stabbing over and over again as we hold down our already suffering little girls. We have seen them seize without end- illness causing their brains to misfire more than usual. And, while they may be twins, they are individual children with individual moments and needs- often occurring either one after the other or back to back. Watching and caring for one child going through the pain of this week would be hard- doing so for two is quite literally exhausting and excruciating. It has quite literally been a full-time infirmary both here and at the hospital.

In these moments, we have been sustained.

It is not these particular days that have made us weak- it is knowing that in the aftermath- our normal includes many more days like this.

It is recognizing that the seizures will still come.

It is the reality that our girls are going to suffer in many ways each and every day to come- bronchiolitis or not.

Oh, my weary, hurting momma soul.

“Satisfy us in the morning with Your steadfast love, that we may rejoice and be glad all our days…make us glad for as many days as you have afflicted us.”- Psalm 90:14-15

As I was meditating on Psalm 90 this morning, God revealed so many life-giving truths to me. Friends, if a thousand years in His sight are but one day- maybe the secret to experiencing joy in this life is to see each day with that exact brevity.

Maybe our perspective and vision needs to be enlightened not only by His truth but through His heavenly hourglass.

You see, while this week has felt never-ending- God tells me it was but a breath.

And- while I would be lying if I said future days don’t feel daunting- thanks be to God that I have Jesus as both an example and an ever-living, always-present Spirit within me to carry, guide, assure and sustain.

“…let us run with endurance the race that is set before us, looking to Jesus, the founder and perfector of our faith, who for the joy that was set before Him, endured the cross…”- Hebrews 12:2

God’s Word doesn’t say enjoyed the cross- it writes endured.

This tells me that Jesus gets it.

He is walking these breath-moments with us.

And— when these light and momentary afflictions are finished— we have eternity with no more tears, no more pain, no more suffering.

We simply have to endure a few more moments, each and every time.

And-

who worthily connects this brevity of life with His recognition of sin? (Psalm 90:11)

We cannot fathom all that we have been saved from.

We will never understand the depth of our sin nor the magnitude of His grace.

This calls me to cry out,

“Let the beauty and delightfulness and favor of the Lord our God be upon us; confirm and establish the work of our hands- yes, the work of our hands, confirm and establish it.” (verse 17)

Lord, establish (initiate and bring about and achieve permanent recognition for) all that we do.

In our eating and drinking and dancing and celebrating- establish the work of our hands.

In our flipping of channels and scrolling through newsfeeds and posting of pictures- establish the work of our hands.

In our driving and working- establish the work of our hands.

In our touching of grains of sand and our hugging of a loved one- establish the work of our hands.

In our caregiving- establish the work of our hands.

In our suffering- establish the works of our hands.

In our living and in our dying- establish the work of our hands—

in all that we do-

establish the work of our hands that we may praise You both now and forevermore.

“Be strong and courageous. Do not be afraid or dismayed…with us is the Lord our God, to help us and to fight our battles.”- 2 Chronicles 32:7a-8b

Why do we watch reality tv shows?

We watch them because of the nature of what they are- real life.

We crave authenticity; we want the true story.

I never imagined that I would be blogging a lot of the details of our family’s life.

When I first began sharing our journey with the girls, I had no idea the type of following that would ensue. I hope you don’t hear any arrogance there- I know it’s not me that attracts the readers. There are plenty of much better writers out there. The story God is writing in our family, however, is unique- and people love to hear rare. More than anything, my prayer is always that you could read these details, see God carrying us, and trust that He can carry you, too.

He fights our battles.

The journey to the hospital for us is always a slow, slippery couple days. It usually starts with a seemingly harmless illness, followed by a turn for the worse, followed by the inevitable truth that we need to have some medical intervention. This illness has been no different really, other than that it came on much more suddenly, involved more complex systems of the body, and has yet to really affect Ally.

I would be lying if I didn’t tell you I’m just waiting for her to get sick.

Some would read this and nod their head in disapproval from my lack of faith.

I’m sure there’s some of that dabbled in.

Others would urge me to, “claim physical healing” over Ally’s little body- and I love the idea of this. The problem is I don’t see anywhere in Scripture that tells me it’s my way or the highway. Yes, our words have power- but God. He sits in the throne room and we have walked this journey long enough to know that He is absolutely in charge. His ways have been different than mine enough for me to simply say, “Thy will be done”. He knows my desires, and ultimately, I want my desires to line up with His purposes. This is the goal.

This post is going to be full of exhaustion and delirium. Sometimes, I think those are the best because they are raw and unrefined- real, if you will.

I have wrestled often with the verses above because I know God tells me He fights our battles- but it sure feels like our family is doing a lot of the fighting.

I am learning a lot about pride these days, and how much of it controls me.

While I share about our family truly in hopes He would get the glory and you would know Him more, I am humble and human enough to know that, whether I see it or not, there has to be a level of self involved in it, too. I think for any of us involved in social media, if we can’t recognize that has to be true, we are in a scary place.

So, today, I am praying that even in the midst of me- the Cheeks would disappear and you would know Him more deeply in these details.

I think God is teaching me that while He is ultimately the One fighting within the spiritual realms, our spirits certainly rage within the battle.

Jesus fought the greatest battle- the one at the cross- and already claimed the victory for us. The real battle has already been won.

So, if this is the case, what are we fighting for?

We fight to trust that He has in fact won- even in the midst of the evil and horrific things going on all around us.

We battle to believe that He is good- despite all the hurt and pain and brokenness surrounding.

We wrestle to cling to Him when it would be easier and more comfortable to simply lean on the fleeting pleasures of this world.

We continue to claim that He is good- most especially in the hardest corners of our lives.

This is what that looks like in our home:

I see Hugh on our porch, and I see a man that is fighting.

When we open God’s Word, when we speak to Him in prayer, it is not out of duty or to gain brownie points but out of essence.

We need Him.

We don’t bring formal, fake words- we cry out to Him with big, complex fears and hurts and disappointments.

The power in the Bible is that, as we do this, He does the changing. He transforms our thoughts; He lifts our view from petty things to eternal treasures. He takes us out of our own circumstances and fixes our eyes on Him- on His characters and His perfect plans. He reminds us to stop looking at the individual threads and strokes of the paintbrush and, instead, look at the final product- the beautiful tapestry that He is weaving- the finalized painting that He is accomplishing.

But friends, we have to fight to believe this.

The past 72 hours have been full of hard- not much sleep, lots of suffering from Bailey Grace, moments where I’m simply waiting for another ball to drop- with the added temptation to think about the fact that we could have been relaxing on the beach.

I could ask what in the world God is doing here- OR- OR– I could simply praise Him for being present and in control of all things.

So this morning, I read through Psalm 16- God bringing life and richness to my soul with each and every verse.

“I say to the Lord, ‘You are my Lord; I have no good beside or beyond You.”- verse 2

“The Lord is my chosen and assigned portion, my cup; You hold and maintain my lot.”- verse 5

“The lines have fallen for me in pleasant places, yes, I have a good heritage.”- verse 6

“…my heart instructs me in the night seasons”- verse 7b

“BECAUSE I HAVE SET THE LORD CONTINUALLY BEFORE ME.. THEREFORE MY HEART IS GLAD.”- verse 8a-9a

This is how we battle.

We begin each day reading verses like the above- meditating on them and repeating them over and over and over until we begin to believe them again. We look past emotions and fears and current circumstances and look up to the One who says never will I leave you and never will I forsake you (Deuteronomy 31:6, Hebrews 13:5). We don’t have to feel attached to these truths in our flesh to know that they are absolute in our souls.

This is what I want you to see. We are not a family with superhuman faith- quite far from it. We have many, many weak moments- of doubting, of frustration, of anxiety- yet He stays strong. No, we are not superhuman- but we serve a supernatural, omnipotent, holy and mighty God who is worthy of our praise no matter what the days hold.

Friends- whatever you are walking through- my hope is that you don’t grow weary of the fight. I know it’s hard- I know throwing up the white flag might feel easier at times- believe me. But God. He is worth it. He is for you. The ultimate battle has already been won. We are no longer slaves to fear- we are children of the living God.

Thanks be to God, because of Jesus, it is a good, good life.

All glory to Him today and always for making well our souls.

“For it was fitting…”- Hebrews 2:10a

There are seasons of life that are sacred.

Sacred in that, sometimes most especially in grief and trials, the memory of them hits and postures in a particular way that cannot be expressed but can only be felt.

Those who have been privileged to walk through really hard things with people know exactly what I mean.

Only our Creator could prescribe some of the same emotions for the birth and death of another human being.

It’s seems paradoxical- but that’s our God.

His ways and His methods and His understanding so different than ours.

He is most certainly Other- and most definitely good.

Perfect even.

“For it was fitting that He, for whom and by whom all things exist…”- Hebrews 2:10a

It’s all for Him, you know.

Your specific story, the details.

Each chapter of your life is not just handwritten but BLOOD-SEALED by the God of the universe. He didn’t just read each chapter before approving it- He planned it intricately.

Every small detail bought with a price that now becomes the greatest gift ever offered- offered to all.

So Other.

How?

“For it was fitting that He, for whom and by whom all things exist, in bringing many sons to glory, should make the founder of their salvation perfect through suffering.”- Hebrews 2:10

Perfect through suffering.

We have some dear friends who are moving in the next few weeks. They walked through one of those sacred times with us- the beginning days of, “something is not normal” and, “what could it be?” with the girls. They prayed with us as we waited for fatal diagnoses for our two babies. They cried with us as we expressed fears and very rational new realities. They brought us food and friendship and truth. Their moving has brought back many memories from those beginning days, and as we were talking about this recently, someone stated, “I’m just so glad the girls don’t suffer. It would make it that much harder, you know?”

Ha.

I reflected on this statement later, because I was so perplexed as to how someone who has been in the trenches of it all with us would not see the suffering involved. And then, it hit me.

As humans, so often our natural inclination is to focus on or see the bad in our circumstance. We fixate on the spilled milk rather than the morning as a whole. We think a flat tire defines an entire 24 hour period. We sigh with frustration when our exact, self-centered expectations aren’t met for the day. We don’t just want to have our cake and eat it too; we desire to plan out the flavor and colors and design as well.

Not Ally and Bailey Grace.

Our girls want and look for and crave and seek out the joy in each and every moment.

They don’t look behind or ahead.

They know that every moment holds infinite blessing if yet we have eyes to see.

“At present, we do not yet see everything in subjection to Him-but we see Him.”- Hebrews 2:8b-9a

But we see Him.

If through Him, and to Him, and for Him are all things (Romans 11:36), then not only has He overcome every moment- He is every moment.

I know Bailey Grace and Ally are adorable. I know their smiles light up a room and that everyone is a sucker for twins much less twins with special needs. Yet- I don’t think this is what draws people to the girls. I believe with all my heart this God-given ability to look for the God in all things is both magnifying and infectious.

Deep down, we all want to be this way.

It is so easy for me to get caught up in the hard. To base our days on seizures and vomiting and unknown pain and the weariness of lifting two very heavy children everywhere we go.

I want to be the kind of person that sees the neighborhood children eating popsicles and running around the park and sees the beauty there. Instead, so often I filtrate my joy through the toxic glass of comparison.

Yet God.

He says that all things are under His control.

He reminds us that all things are fitting- based on His goodness and glory.

He hasn’t just seen each and every last detail- He wrote it.

Ally and Bailey Grace may have MR added to their charts (for the politically correct ones out there, intellectual disability)- but I think they actually are wiser than most of us.

They get it.

They understand that because of the grace offered by Jesus on the cross, all of our stories are magnificent miracles- down to every last moment.

They grasp that God is a part of everything therefore everything is absolutely perfect.

They don’t even have to strive to be distracted by joy- they just are.

I have yet to meet a person that isn’t attracted to this.

They don’t have to be seen in their suffering- they simply want to see Him and are therefore vessels for Him to be seen.

Now we don’t see everything in subjection to Him- but we see Him.

Oh, that this reality would be enough.

Enough to get us through the hard.

Enough to bring us joy in the heavy.

Enough to remind us to see God in each and every trial and each and every celebration.

All Him.

Today, I am praying that, like Ally and Bailey Grace, I would not compare.

I am asking God to give me new vision to see the joy in every millisecond.

I am seeking fresh perspective in the truth that our lives are but a breath on earth yet eternity is forever.

I don’t want to escape the challenges nor put band aids on them; I simply want to see them from a much bigger angle- from heavenly lenses if you will.

I am praying the same for you.

May we find ourselves so distracted by joy today that all frustrations and unexpecteds and pains fade into the background in light of His presence in all things.

He is faithful.

At all times.

In all things.

No matter what.

To Him be the glory.

Trust in the Lord with all your heart, and do not lean on your own understanding…- Proverbs 3:5

“Look at the babies!”

A little girl, probably two years old, shouted this with glee as we passed her in the store. She was munching on a cookie and “getting into everything” as some parents say.

“Those babies are about to take a nap!” The mommy smiled.

“It gets better, I promise.” She winked at me.

My children no longer take naps.

They are three years old.

You are the fourth person who has told me that they look tired in a span of twenty minutes.

This is just how they are.

These are the things I thought. My response?

“That’s what I hear! Have a great day!” (insert enthused fake smile on my face).

“My brokenness is a better bridge for people than my pretend wholeness ever was.”- Sheila Walsh

As a parent of twins with special needs, I have connected with many caregivers throughout the past few years. I can tell you that one of the biggest struggles we all share is other people simply not understanding our world. There are many hurt feelings, broken relationships, and frustrations directed towards moments in which already opened wounds were poisoned with salt- most of the time unintentionally.

When we know better, we do better.

I am the QUEEN of opening my mouth without thinking. Word vomit, I call it. I shudder to think of the number of things I have said to strangers that were untimely at best and hurtful at worst. I say this because I am a firm believer that we have to assume the best in people- not against wisdom but in honor of the grace we have been so lavishly given.

Love believes the best in all…- 1 Corinthians 13:7

In situations like the one above, I truly know that she was just making conversation, completely unaware of our story.

I was wired as a processor. I am very aware of my emotions and the emotions of those around me, sometimes to a fault.  There has been a common theme around our family recently, one that no one has stated until Hugh- out of no where- spoke up a couple days ago while we were sitting on the couch waiting for the girls to fall asleep:

“Ally and Bailey Grace are getting a lot bigger”.

Yes.

I know this.

I carry them around solo all day.

This is what I thought. What I said?

“Can we change the channel please?”

This signified much, much more in my heart than a television button.

Even as a processor, this is an area of our life that I absolutely do not want to touch. You see, I have watched people I know be a caregiver for one immobile loved one. While this is not to be taken lightly, it makes sense to me. But two?

Even the children’s rehab center laughed (not in humor but out of awkward nervousness) when I asked them how I was going to navigate getting the girls around as they got bigger.

Their lack of answer spoke volumes to me.

Now, those of you who have logically-wired minds are currently coming up with a list of devices or mannerisms or formulas for how this is all going to go down. I am sure that there are some practical answers here- but I kindly ask you to not give me ideas on transporting my girls after reading this post. We have plenty of knowledgeable people in our medical and therapy teams that will walk us down that road when the time comes. My heart is not grieved or worried about the actual logistics; my heart hurts over the reality that a time is coming in the distant near future where some of the freedom we have with our “babies” is going to be taken away.

Whatever you do, work heartily, as for the Lord and not for men, knowing that from the Lord you will receive the inheritance as your reward. You are serving the Lord Christ.- Colossians 3:23-24

obey…not by way of eye-service, as people-pleasers, but as bondservants of Christ, doing the will of God from the heart, rendering service with a good will as to the Lord and not to man, knowing that whatever good anyone does, this he will receive back from the Lord…- Ephesians 6:5a,6-8

Those of you who have read On Milk and Honey have heard me speak of the Newborn Trenches. These infantile days signify a season of life for parents with not much sleep and a baby’s complete dependence on a parent for their every need.

These Newborn Trenches?

They are our day-to-day life.

This “getting better” that that mother spoke to me in the store?

It is getting harder.

The girls are getting heavier, their needs are getting greater, and we are not getting any younger (and I’m pretty sure we are aging at a rapid pace- insert my constant eye bags and  Hugh’s gray nose hair recently spotted. Sorry, babe).

My confession to you is that sometimes, I want all this to be seen. I want at least one person to be a fly on the wall for one entire day. To watch me lift 60 pounds into a car, only to have someone vomit and have to unload the car yet again. I want to broadcast all the medications- times two- all the quick decisions- all the waiting for a seizure to stop- all the feeding debacles- I want the applause here. I want my friends who feel frustrated that I forgot to text back, seemed distracted when they last saw me, or cancelled at the last minute to understand the chaos that is my normal.

It’s ugly, but it’s the reality of my heart.

Yet- and you know where this is going-

Yet God.

He reminds me that I have an Audience of One and that He sees all. He looks at me; and  like the older brother in the story of the prodigal son, disappointed that the younger brother is getting a party- feeling cheated and unloved- He reminds me that the kingdom is already mine and that this grace in itself is enough to praise Him forever and ever and ever.

He knows our exact lot because He has written it and walked it.

And, when I am fearing wheelchairs or new medical concerns or prognosis or illness or the girls getting older (or worse, the girls not getting older)- He encourages me to not lean on my understanding but to instead, lean on Him.

Friends, I don’t know where your heart is. I don’t know what you are walking through that feels like you are alone or misunderstood or unseen. Hear me say this, however:

God is with you.

God is working.

He never tires, never quits, never gives up on you.

He is faithful.

His mercies are new every morning.

No burden is too heavy when placed in His mighty hands.

Even so, it is well with my soul.