Blog Category: “a disabled life”

i would

By admin,

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.

  Filed under: "a disabled life", "marriage", "the dross"
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should i expect it?

By admin,

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.

  Filed under: "a disabled life"
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How a shoe changes everything

By admin,

 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.


  Filed under: "a disabled life"
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some good change

By admin,

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

  Filed under: "a disabled life"
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his request

By admin,

“For I know that my redeemer lives, and at the last he will stand upon the earth. And after my skin was been thus destroyed, yet in my flesh I shall see God, whom I shall see for myself and my eyes shall behold, and not another.” Job 19:25

we found ourselves at a cottage this weekend, and are now getting to enjoy a warm morning on the porch. i was looking forwarding to morning, knowing that mercies would be anew. when i asked ian what he would like to post about, he said prayer requests and specifically that he would be able to walk.

thank you, always

i&l

  Filed under: "a disabled life"
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sometimes, it’s embarrassing

By admin,

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

  Filed under: "a disabled life", "the dross"
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a mini ian, someday?

By admin,

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

  Filed under: "a disabled life", "family", "marriage"
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what I want all my girlfriends to have

By admin,

i remember sarah telling me that she was shocked to see ian showing affection to someone – she was used to him being the sarcastic life of the party. willing to talk to anyone, but also not shy to say funny things that may or may not be taken well. but he was in love, and this friend that she had known since she was little and had been homeschooled with was actually outwardly showing his love.
that’s the ian that i fell in love with. and that’s me that he was showing affection to. he would gently hold my hand – as gently as he could considering that he has the fattest fingers in the world. to me it often felt like a vice grip. but it was still so sweet.
but then for a few years, that hand didn’t have life. it couldn’t squeeze when it wanted to or reach out to find mine.
that’s different now.
that same ian seven years ago that shocked sarah is still marked by gentle affection. and he can make that hand move again. since we’ve been married, one of my favorite parts of my day is falling asleep holding my husband’s hand. and one night as i lay there, i realized that this is what i want all of my girlfriend’s to have. a gentle husband who is so happy to fall asleep with hands bound. 
i’m thankful tonight to be married to a tender heart.
love
l

  Filed under: "a disabled life", "marriage", gratefulness
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I have a brain injury, too

By admin,

On Friday after work, it was warm in the 70s, the end of the day was on my mind followed by two more work-less days. Driving home with the windows down, I watched as people were jogging, playing tennis, sliding down the homemade slip-n-slide outside their college apartments. My desires to “do something” were growing. And I was so glad to not be at work.

But then I got home and saw Ian sleeping, so tired from his cold, and not able to go for a run with me. Or even a walk. And his disability again freshly became mine. And I had to try to fight to let my desires to go out and enjoy something die.

This is what it’s like to be married to someone with a tbi. I imagine it’s the same for someone who is chronically sick, or has special needs, or who is dying. Their sickness becomes their spouses sickness. I have a brain injury, just like Ian. Because when we became one flesh, I gained his sorrows. Just as Jesus was a man of sorrows and has shared in them with us, I share them with Ian. And while it is a gift of marriage, it is painful and sad.

We could probably write a whole book on this topic alone. Because it changes everything about our life, even mine. But Jesus knows it more deeply than us, and if we can just rest there, we will be filled.

Thank you, always

Larissa

  Filed under: "a disabled life"
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