the post i hoped i'd someday write

i snuck away from work today, just to visit his session and see how things were going.

this face of his has been  making me smile so much lately, and i wanted to see his progress.

the progress he had made last week, when i found him here, in the basement of the therapy office, walking with the parallel bars.

"the bars gave him the confidence he needed," the therapist said today.

the confidence to do this.

to take steps on his own.

for the first time in eight years.

she didn't think he was ready, to have her let go and let him slowly work it on his own.

i had told her months ago that if he was closing to taking even one step without support, i needed to know. i wanted to be there.

we didn't think that would be today.

but it was.

and i was there.

and his caregiver who has been with him for seven years.

and after eight years of hard work and not giving up and not letting discouragement take over, he's broken through something that has been holding him back.

"it gives me hope for my future," he said, as we sat on the couch waiting for our 15 and then some guests to arrive at our spontaneous party, because everything needs a celebration.

his niece and nephew have been praying for him, and when they heard the news, even their little hearts knew.

"uncle ian," his four year old voice said. "god answered our prayers and you're walking on your own without falling down."

"uncle ian," her voice cracked, three years of happiness breaking through. "He (God) saved our message. and i'm grateful because you're walking."

God did save our message, our prayers, and He hasn't forgotten them. He was not dependent on our faith.

he fell into sleep easily tonight, his tired muscles needing their rest and his brain needing silence.

he fell asleep as a good man who hasn't given up and who has known all along, deep in his heart, that His God is for him - always.

thank you, for praying for ian,

invest

 this weekend was for flying south, far away from the below zero temps and white flakes.

to reward the work of writing 75,000 words

 and to invest in our marriage all that this coming year may drain from it.

and peace and rest met us, an answer to many prayers, and in the ways we wouldn't have thought possible.

and his dad might not have ever imagined we could have done it.

but we did. because God has done much.

a spark

we were talking about the acronym the pastor gave us, reminding us about the ways of love, how they look and feel and act.

we were sitting in a small room, circled together, thinking on how we distribute love and who we know that does it so well.

"ian, how are we to love our spouses?", our group leader asked.

"thinking of them before yourself."

we kept reflecting on love and what it looks like and then what i always fear happened, as i saw the effect of a catheter that decided to stop working. i saw on the floor what is always on my mind in public; i saw my own example of what joni eareckson tada has spoken of many times before, the fears that remain into adulthood when disability lives in your body.

i left the room quickly, discreetly, to find what i needed to hide it, remove it, fix it.

when i came back into the room, she stood up and moved closely to us, gently reminding us that we were family. gently reminding us that we need not be embarrassed, that they loved and would help us.

and there it happened, the love that we were speaking of, the acting out of Jesus death and what it did for us. they helped us to the car. they cleaned up after us when we left. they joyfully loved.

in the safety of our car,

"ian, i'm so sorry. i'm so sorry that those embarrassing things happen."

then tears because it was a hard week and because lies were making a home in my heart.

"ian, i don't understand this. i hate this."

"joy is closer than you think."

"how can you handle this? i'm so sick of this brain injury."

"God gives me joy in the stupid things, like caths breaking."

i asked him how, because i didn't get how he could be laughing, while he sat in wet sweat pants, and while i cried.

"because this is all so fleeting."

then quietly, in our little white car, his truth knocked out the lies in my head. his Psalm 73 truth cut through the lies that i was believing.

and there, in the midst of the week that was holding anything other than hope, i experienced the little miracles that i had read about earlier that morning. the little miracles of hope.

in the midst of a week of crying and longing and heaviness, the miracle of Jesus, living out in my husband, living out in our small group, who entered into our lives and put on Jesus love instead of selfishness or judgement.

and deep inside, a little spark grew, just a fraction, but enough to remind us.

"God is in this."

Walking

Now he's walking, without a walker. Just a cane and one of us helping balance with a gait belt.

Thank you for praying. And for buying his art so he can keep going to therapy.

It's working.

when we cause other people to be grateful

"i start to get upset about the small things in life and then i think of you guys and i'm filled with gratefulness for all that i have."

i know what they're trying to say. but what they're trying to say is not what i hear.

"sometimes i think my life is hard but then i think about you and realize that you have it much worse than me. then that makes me grateful for all of the prosperity i have in my own life because at least my life isn't as bad as yours."

that's what i hear.

i try not to hear that, try not to have thoughts that twist someone's intended encouragement.

but it's hard to respond to my husband's suffering when we're told we're a source of someone's gratefulness. because then I walk around thinking that people are looking at us and thanking God, or their version of a god, that they're not as messed up as we are. that inherently makes us a victim.

we want to be driven to thankfulness. but we don't want people to be thankful because they don't have trials "as bad as ours," because some day they might and then that crutch that was built will be gone. that comparison, that "at least its not this," sets our heart on a best case scenario instead of on God, with whom there are no best case scenarios - only sovereignty.

i want to be thankful that we have a god so big even the winds and the waves obey Him. when people see us, i want them to be thankful because they see a god that redeems and upholds and a god that sits on His throne. to derive gratefulness from comparison, to maintain the "there are starving kids in Africa" mentality makes the children a victim or object of pity and sets us up for failure when the starvation comes to our families because of adultery, or car accidents, or heartbreak.

to build our thankfulness on comparison and anything other than God himself will only deprive us of the joy that is to be found in deeply-rooted thanksgiving.

i'm praying that i get to that root myself, because the comparisons i make are a costly habit.

thank you, always
L

motivation

ian was back on a four-wheeler for the first time today - which means our trips to the country just got a lot more exciting. he's either getting a lot stronger or we're getting more daring with driving a golf cart and riding a four wheeler becoming newfound activities.

the pool opened this weekend, which means upcoming date nights with chlorine and pizza. i'm praying that ian can walk into the pool this year instead of riding in on a wheelchair.

i asked ian if we could request prayer for his motivation. he's working hard - but only when he wants to. i know that only God can keep him motivated and engaged and aware of a greater purpose. we would love any prayers for that specifically.

"my forgetfulness is the problem. it's running rampant. i have trouble remembering the goal. I need God's power in my life." - Ian

thank you,
i&l

his own two legs

for the first time in seven years, ian left the house without a wheelchair. tonight he left with just the strength in his legs and his walker.

i asked him how it felt and he said he feels the independence.

so grateful that after seven years, he still moves on. so grateful that Ian and God continue to surprise me.

i love you, ian.

it's not pity

i struggle sometimes with the focus of our blog, our book, our encouragement from others. sometimes the encouragement, unintentionally, makes ian into an object of pity. 

sometimes ian's value is sacrificed with a well-intended encouragement to me.

sometimes all i hear is that i've made a sacrifice. that i've made a hard choice. that i'm the focus.

sometimes we forget that the one who is disabled has made a sacrifice.

as we sat this weekend at a film festival, i looked at ian sitting next to me. i listened to the screen, to the documentary voices telling me about the gift of stepping into the darkness of loss and disability and grief.

i looked at ian who i came into this darkness with and who is a pure gift to me.

i didn't know how to love until ian. i didn't know how to love until God led us into darkness, together. 

ian has fought for seven years. ian has entered into marriage knowing that he would have infinite losses. he knew that he would be marrying someone who wouldn't always feel in love with him and who wouldn't always be kind. he knew that he would live an entire life of giving up his preferences and thinking of someone else first and making hard decisions for the sake of Christ, all with a disability. he could have given up or chosen despair or been afraid that God couldn't keep our love.

i asked ian last night why he married me.

laughing, "because I love you."

ian is not to be pitied. i am not to be pitied. God is to be rejoiced. 

the foundation of all that we are is love. love saved us. love moves us. love molds us. 

this, for us, was not learned in health.

he's still working

he's still working on walking. this time with a walker. we're very grateful for strength.

through Jesus

Desiring God recently hosted a  conference on disabilities. we listened to the below message on the way home from our thanksgiving travels and found some encouragement. enjoy if you have time:)

hope of heaven

"But our citizenship is in heaven, and from it we await a Savior, the Lord Jesus Christ,  who will transform our lowly body to be like his glorious body, by the power that enables him even to subject all things to himself." - Philippians 3:20-21

We're gonna fit in in heaven. We don't fit in here because our citizenship is in heaven. (...will transform our lowly body) means everything. He can take our bodies and make them glorious like His. It's wonderful because he owns us and will make us perfect.

This makes me realize that nothing here (like my disability) truly matters. What matters is heaven.

You're only gonna have this body for a short time.

-Ian

on ian

it's been awhile since we've done an update on ian's health. slow and steady continues to be the way of life. ian attends physical therapy twice a week and speech twice as well. he's gaining strength from physical therapy - walking with assistance has been the main focus.

other than strength in walking, we don't have any tremendous goals that we've set forth. we continue to work with him at home on annunciation and short term memory - all things that when gaining in those areas, affects so much of our lives.

please continue to pray that ian's memory would improve and that his legs would become more and more ready for walking.

this appears to be what the rest of our lives may look like, but we want to keep hopeful that more progress could be made, even so far after his injury.

thank you, always

i&l

his heart

i was facing the screen, my gaze perpendicular to his. i looked over to see him looking at me, his left eye scrunched.

laughing, "why do you look so angry?", i asked.

"i'm not angry at all."

"what are you thinking about?"

"you. and how much i love you."

"what specifically?"

"how your smile works wonders for me."

deep inside his heart is a spring overflowing with the love that the Holy Spirit has placed inside of him. through loss and a thought process that can be compared to wading through thick, dense, jelly, he gives love and he gives me life. this man that i fall asleep next to every night has done more for my soul than i could have ever done on my own.

please continue to pray for ian.

i finally got guts

i avoided it for seven months, but today i had the guts to weakly type our names into Google. then i had the guts to read comments on people's blogs, primarily made after the release of our video on Desiring God.

not really so fun.

"ian, people are saying uncomfortable things about us on the internet."

"who?"

"people who have seen our video."

"what are they saying?"

"some that our marriage isn't legal and that you have the mentality of an eight-year-old."

"you don't believe them, right?"

"trying not to."

"they don't know us."

that's where it begins and ends. we've entered into a very public life, willingly, and we enter that with fear and trembling. we know and respect that we can have differing views. and we know that we are nothing extraordinary. we live in the midst of sin and fears and temptations. maybe we could have made the video differently. maybe i could have worded things differently. but eight minutes never sums up a life.

along with a public life comes scrutiny, and disagreement and other things that can feel really uncomfortable.

but, i can't help but feel the need to clear up two things, as maybe my lack of clearing them up has confused some people. ian does not have the mentality of an eight year old (an eight year old could not have given the answer of "stool pigeon" during a round of taboo last night) and yes, we do have sex.

we also love God and are in love with each other. we continue to pray for wisdom and discretion in this  public role, as we embark on speaking engagements and writing a book. but we mostly pray that heaven would  be oh so near.

thank you, for praying for ian.

love
i&l

i would

it was 3:00 in the morning, a very light and tired night, heading to bed.

"ian, i wasn't being very respectful of you tonight. will you forgive me?"

"yes. why were you having trouble?"

"just not responding well to your brain injury."

"you know that i would change it if i could, right?"

he's so good to me.

should i expect it?

My parents generously scheduled a vacation in a beautiful, gated community for a week for our whole family. Ian and I couldn't resist the pool, even though it's too soon after Ian's surgery to swim. It seemed enough to get to lay in a chair, by the pool, and I could hop in and out while keeping close to Ian.

But it's a beautiful day and the pool is full. All the chairs are covered with bodies. And so we found a little section of grass, with one bath towel, and I awkwardly helped ian to the ground.

Of course people were watching, even though their eyes darted as soon as they met mine. Yet no one offered my disabled husband their chair. Someone who could easily and comfortably lay on a towel, kids even, have a chair. But no one offered one to Ian.

It struck me once we had settled, after we removed the wheelchair cushion and repurposed it for a pillow, that no one asked. They just watched.

But, should we expect that kindness? Should the five year old be told by his parents to give his chair away?

I'm still not sure. And I don't know what I would do, if I were the one in the chair.

I do though, want to seek after kindness of all shapes and sizes within my own heart. And I do want these own feelings of mine to help me to anticipate others needs, especially when it's someone like my dear Ian.

How a shoe changes everything

 Spending a few hours in the hospital today has reminded me of some life lessons that I've learned during extended hospital stays. Most light hearted. As Ian and I often say, if we don't laugh, it'll kill us.

Nothing commands attention better than a nice pair of heels. A little trick taught to me by my Aunt Cheryl - doctors and nurses treat you much differently if you don't look like you forgot to get dressed when you got up. Not to mention the sound of the heels down the hallway - you may even be mistaken as the doctor. However, this is most applicable to women and if you're simply escorting a patient. If you're the patient, just stay in your pajamas.

Don't go to the gift store. You're either going to buy something expensive and stupid because you're  so sad, disoriented and sleep deprived or you're going to get really annoyed that the hospital would even think that you wanted to go jewelry shopping at a time like this.

Travel with a toothbrush and toothpaste.

Ask lots of questions. Be annoying, even. Not all hospitals are created equally. And if your gut tells you it's a bad place, it probably is.

Maybe consider not talking to anyone in the waiting room. You may hear have to feign paying attention when you're just trying to figure out when you can sleep next. Not because you're mean, but because you literally can't think anymore. One good trick is to just put your head back and close your eyes immediately after sitting down.

Expect to get lost in the maze of wings, units, wards, floors. If nothing else, follow the smells of the cafeteria, grab coffee and regroup.

If staying in a family house, be prepared to cry. Everyone is there because something is wrong. And a lot of times they aren't going to get better. That might even be you. If not now, maybe someday.

If you're tired from pushing a loved on in a wheelchair, just go to a hospital and make yourself look exhausted. Someone will offer to push the chair for you. Maybe even give them a fake office you're visiting, just to get a break.

If you follow suggestion number one and also push a loved one in a wheelchair, make sure your trip does not involve significant hills. Or you will look really awkward. And then be careful of the elevators. The slots as you step out are the perfect size for a heel to slip down into.

sometimes, it's embarrassing

i dont know, maybe it's me, but sometimes suffering is embarrassing. when it's prolonged, and so outwardly apparent, and creates so many needs. living through brain injury and brain cancer, and losing someone to brain cancer, and now thinking about a smaller type of cancer, it's another need. another reason for people to pray. another reason for maybe some to think that our faith is too weak. another reason for "i just feel so badly for them." yes, here we are again, friends, needing healing, and relief, and strength. 

i don't know what the Bible says about it. ian would say it's just a feeling. but it's there. and i'm sure we're not the first ones to feel it. so that's probably why i want to say it out loud. and i know that it is good for us to be cared for, and prayed for, and to ask for prayer. and i'm sure that somewhere Jesus can satisfy and heal it. but sometimes, it just sits there in our gut.

as for ian's appointment, it may not be cancer, but they will treat it as if it were. we will be scheduled for two outpatient procedures in pittsburgh, so we will just say overnight at a hotel. they will remove the nearest lymph node and have it tested.

thank you, truly, for praying. even if sometimes it feels, embarrassing:)

i&l

some good change

recently God has seemed to be opening doors for ian to receive new types of therapies and be seen by a new physician. we're praying that these changes are fruitful for us and equip ian with what he needs to keep making progress.

thank you, always
i&l

a mini ian, someday?

throughout our engagement and into our marriage, many inquiring minds, who are strangers and not dear friends, have asked about our ability to have children. surprisingly, because of our  disability, there has seemed to exist an assumption that those questions are appropriate, when none of them were asked to our friends who are in full health. not that these questions are wrong, but they're not helpful either. here's why.

in any marriage, how does anyone know if they can conceive until God reveals a yes or no? 

with or without disability, no one can answer that question except for God. 

and so that's where we leave it. we would both love to be parents. i would love to have a mini ian running around, filling our lives. maybe not yet. maybe not for a long time. maybe next year. maybe we'll have biological children, or maybe we'll adopt. 

just like we don't want people to assume things about our own life and future, we don't want to assume on God. He may call us to raise 10 children who look and sound just like us or he may just keep providing nieces and nephews for us to spoil. either way, "before me, as behind, God is and all is well."

i&l