A Newly Felt Grief

July 27th, 2014

It’s been nearly two and a half years since my daughters diagnosis and sometimes I feel like I’m only just now starting to process it. And I’m struggling.

Maybe it’s because we are only just now starting to feel the effects of her diagnosis. I mean for so long her diagnosis didn’t mean much more to us in our day to day life than an extended baby season. That’s changing now.

Maybe some of these feelings were brought on by traveling and imagining what that will mean for us in the future. It was difficult and challenging and will only become more of a struggle as she gets older.

I don’t really know what brought it on but I’ve cried a lot in the past three days. Over what could have been. What should have been.

I remember laying in bed late at night one night soon after Sage’s diagnosis and telling Bryan, “She is God’s grace to us. And I wouldn’t change her.”

I still believe that she is God’s grace to us, but lately I would change her if I could.

If I could magically heal her and make her normally developing I would.

I wish. I long. I desire so much lately for my daughter.

I wish that she was a normally developing almost three year old. I wish she was making mischief and getting into trouble. I wish she was starting to play together with her brother and other kids and learning how to make friends. I wish she was talking and walking and jumping. I wish she was eating real food and sleeping through the night like a normally developing almost three year old. I wish other people felt comfortable watching her and that I felt comfortable leaving her with them like I would if she was a normally developing two year old.

I wish I could change her.

And then I feel completely overwhelmed with guilt for having that thought, that desire.

Mostly though I just feel sad.

And I think that’s ok. It is sad.

This sadness, this sense of loss, these things are grace to me too. It is in these that I learn to lean. It is in this pain that I learn to look to the God who made my daughter and loves her even more than I do. It is in this that I learn to trust. And it is through this that I receive grace upon grace.

I imagine that I will probably need to cycle through this grief multiple times, again and again, in the coming years. I’m sure there will be days of gratitude, days when God seems near, and then there will be days like these. Days when all I can do is fall on grace, call out to love, cry, and then open my hands to receive.

Rejoicing in the journey,

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On Getting Wheels and Becoming a Toddler

July 25th, 2014

She has wheels now and I have such mixed feelings about it.

As we pushed the wheel chair out of the building yesterday my heart beat was fast and irregular. I was ecstatic thinking of the freedom that this chair could bring to my daughter. I was happier than I could express seeing the smile on her face. But as we walked out the door my heart froze for a moment.

It’s official now. Final now.

This is not what I had wanted for my daughter. Even after her diagnosis I still held to that small chance that this day wouldn’t come and now it’s arrived and passed.

I wanted to clap and jump and dance with happiness, but I also wanted to burst into tears of grief.

Today my mix of feelings concerning her wheel chair has only gotten more complicated.

I feel like this wheel chair has finished the slow progression to toddlerhood for my daughter. And I’m not sure I like it.

She has always been a fairly easy baby (apart from the sleep issues). She’s been a happy, fairly content child.

She showed signs of deep determination and internal stubbornness during therapy sessions when she would keep trying things over and over without getting tired. But she has never been prone to frustration. She would play nicely on her own from a fairly early age and was often quite happy to watch as I went about my daily activities.

I have been so grateful for her peaceful temperament, especially since my oldest is far from peaceful and very demanding.

She has slowly started to show more signs of frustration, stubbornness, desire and discontent in the past few months. Bryan and I joked and laughed about a month ago, saying “oh she finally turned into a two year old.” But it really wasn’t so bad. Maybe one tantrum a week – a miracle compared to other toddlers.

Today, her first full day with the wheel chair, that changed. She became a full blown “terrible two”. I can’t even begin to count the number of tantrums we had today. It was nearly constant.

You know that stage when babies just start to become aware of their environment and begin to realize that they can move but their bodies aren’t quite there yet so they just end up frustrated that they can’t quite do what they want to do or get where they want to get? My daughter entered that stage over night.

Her frustration also led her to attempt to communicate more, in an attempt to get me to get her where she wanted to be, but her communication skills are so far behind (re: nearly non-existent) that it just led to more frustration for both of us.

I know in the long run that all of this is really good. I know that this frustration will ultimately turn into motivation. I know that her trying to communicate more will ultimately lead to better communication. But it was a difficult day. A frustrating day – for both of us.

As I end today I feel thankful and excited for her wheel chair and the new sense of independence it’s giving her. I feel hopeful that she will eventually figure out how to use it and be able to get places on her own.

I also feel frustrated for the ways in which it is making my life more difficult in the short term and for the inconvenience of it. (Totally selfish I know, but there it is).

And then there’s the sadness. Sadness that my daughter even has to go down this road.

A pure emotion is rare, isn’t it? Most of life is more like this, lots of emotions all mixed together at once.

So I end the day desperately trying to hold onto the thankfulness and hope more than the frustration and grief.

Rejoicing in the journey,

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Running Free

July 22nd, 2014

running free

The moment is engrained forever in my memory.

I stood next to my daughter’s stroller in the middle of the soccer field. My son and husband ran down the field with my sister-in-law and brother-in-law. They kicked a ball back and forth between them. Smiling the whole time.

Sage squirmed and cried out from her stroller. She pointed at everyone running on the field and then urgently pounded her hand on the buckle of the stroller. Her sign that she wants out.

My sister-in-law took Sage out and held her as she ran. For a while. Sage is getting heavy and there is a limit to the time anyone can hold her.

She was not happy about having to go back in her stroller. I pushed the stroller a little and ran after her daddy a few paces. She giggled and calmed down. We watched everyone else running free. For a little while.

Then the pointing and crying out started again.

It was at this point that my mother-in-law showed up with her dog after their walk. The dog was excited about being at the field. My husband’s uncle held the leash for awhile and then decided to let the dog go.

It was amazing to watch the dog run. He leapt and jumped and dashed all across the field. Everyone cheered him on as he ran back and forth from person to person.

I watched. But all I could hear were my daughters whines to get out of the stroller. All I could see were her imploring eyes begging to be set free.

And that’s when it struck me. Hard.

My daughter is like this dog. Leashed.

I watched the dog dash quickly across the field. Her joy at being free to run was palpable. And I thought, “This is what my daughter’s soul wants to do.”

She wants to run free. She wants to dash quickly from her dad to her brother. She wants to dance and run and keep up with her cousins.

Sometimes she makes me laugh with how unaware she seems to be of her own limitations. I hold her and she twists and strains in my arms as if she thinks that if I would only let her go she could run.

I love that she isn’t overly aware of her limitations. I love her determination. Her eagerness to try things. I love how strong her desire is to move and get somewhere.

But it breaks my heart. Because I know her limitations.

I hold on to hope that she will walk and talk someday, but I am keenly aware of the odds.

Standing there watching that dog set free my heart broke. This is what my daughter’s soul longs to do, and it’s unlikely that she ever will.

And then I had another thought, “This must have been what the man who had been crippled since birth was like when Jesus healed him.” Jumping and dancing and praising God.

There was a quiet, whispered, prayer in my heart at that moment, a simple plea, “Someday…”

I don’t know what God will do in my daughters life or her body. And I believe that sometimes the bigger miracles come when God leaves us in our circumstances. There is a lot of beauty and good that can be worked in our hearts and the hearts of others from hardship, lack, and brokenness. I know that full well.

I know that God will work good in my daughter and through my daughter because of her disabilities. But there is still a part of my heart that hopes that one day…


her disabilities wouldn’t serve as a leash holding her back.

That one day…


she wouldn’t feel left out when everyone is running and playing together.

That one day…


she would move as freely and as joyfully as that dog, running free.


Rejoicing in the journey,


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Lessons From Yoga: Dispersed Progress or Peripheral Progress

June 30th, 2014

Dispersed progress. That’s what I’m gonna call this lesson. Basically it’s the idea that progress in one area begets progress in other areas. Usually in a peripheral area – an area near or similar to the other area.

A few months ago I tried to do crow pose. It’s a pretty intense arm balance and requires a good deal of core strength to hold. I got in to it but my nose was only an inch off the mat and I couldn’t hold it. I fell. Immediately.

Then I didn’t try crow for months. Instead I started doing yoga more regularly in general. At first it was maybe once a week. Slowly it became daily, as desire grew threw play.

A few weeks ago I came back to crow again. This time I could do it and hold it. Not for long, mind you, but it happened. I took a picture to commemorate and fell out of the pose just after the shutter snapped.


This week I returned to crow and I held it. Not for a short time, but for eight full slow breathes. It was controlled. I lifted into it with control and I came out of it with control. There was no falling, no stumbling, no shaking. Just strength and freedom.


It got me thinking.

It made me think about how change happens in our lives, how growth comes, how we learn and develop new skills.

I could have learned crow pose by doing crow pose every day. It would have worked. Eventually I would have gained the strength needed in exactly the right muscles. But I think it might have taken longer that way.


If I had done that, if I had dug in and worked on crow pose specifically, I would have ended up feeling discouraged. Each time I fell out of the pose my psyche would take a little beating. Eventually I might give up and decide I am just not capable of mastering crow.

It made me think about what other areas of my life I might need to approach this way.

There are plenty of things I want to learn and master in my life. Perhaps I need to learn them by focusing on other areas instead of directly on the desired skill or trait.

How about this for an example.

How many times have I thought, “I don’t want to yell at my kids anymore?” And then turned around to find that my child has just purposefully dumped two buckets of bath water on the bathroom floor after I just told him to keep the water in the tub. My voice raises. “I just told you not to do that?! What were you thinking?!”

I calm down, apologize for yelling, make my kid help clean up the water, and resolve to not yell again. Then my child throws a toy at his baby sister. The momma bear in me comes out. I’m pretty sure literal steam is rising out of me ears like one of those angry cartoons. I yell again.

I don’t know about you, but when I resolve not to yell it doesn’t really do any good. Focusing on learning patience with my children doesn’t result in developing patience with them.

I’ve noticed something lately though, I’m not yelling at my children as much. In fact I almost never yell lately.

This change happened not when I was trying to stop yelling and working on learning patience. It happened when I was focusing on other things. Particularly lately I’ve been thinking a lot about forgiveness and grace. I’ve been focusing a lot on surrender and acceptance of whatever God sends.

This is dispersed progress. Focusing on one area resulted in progress and growth in another area.

I was also thinking about how this concept might apply to another more tangible skill I want to improve.

Many people say that the best way to improve as a writer is to write. I don’t doubt that advice, but I’m starting to think it’s only one method and perhaps there’s another (dare I say better?) way.

Perhaps like learning crow, or growing in patience with my children, I need to apply some dispersed progress to my writing life.

I have a hypothesis that focusing on other things besides writing – for example reading, observing people, involving myself in relationships, living life fully and presently, etc – might do just as much (if not more) to improve my writing than just working on writing regularly.

Dispersed progress results in well rounded progress. It results in progress that is almost surprising in how it sneaks up on you. It results in a road to progress that is encouraging instead of discouraging.

Next time I feel stuck as I try to learn something or try to enact some change in my life I want to remember to step back and work on something else. Step back and find some peripheral area on which to focus.

What do you think? Are there areas of your life were you’ve seen dispersed progress at work? Areas were working on one thing resulted in learning another?

Rejoicing in the journey,

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Confession of a Wounding Tongue

June 22nd, 2014

I am capable of great cruelty. I have spoken in anger, in fear, in judgement. I have spoken words that have cut and wounded others.

I have ignored. I have burned bridges. I have broken friendships that could never be fully mended.

I have justified my cruelty. Sometimes saying it was “right” or necessary, even saying it was guided by God.

I have been as a crusader. Blinded to the truth of God’s grace.

I have returned love with harsh words. Wounding words. I have returned kindness with burning silence. I have snubbed those who have pursued. I have judged harshly. I have bullied. I have yelled. I have turned my back on friends. I have spoken with the intention of wounding, and I have withheld with the intention of hurting.

From the overflow of a fractured heart, a fearful heart, a wounded human heart, a walled-off and hardened heart, I have acted rashly, aggressively, regrettably.

I like to justify and think that these things happened in my youth, in my immaturity. And although there were more severe episodes of this in my past, the truth is it continues.

I have used my words and my silences in destructive ways and in this I continue. My tongue is far from tame.

This is my confession. This is my apology.

To those I have wronged, forgive me.
To those I have made cry, forgive me.
To those I have called out harshly, forgive me.
To those I have ignored, forgive me.
To those I have given the silent treatment, forgive me.
To those I have wounded, hurt, and shown no grace, forgive me.

There have been apologies in the past and yet still I carry regret for these actions, pain for the pain I have caused others, hurt for the lack of grace I have extended, the lack of love I have shown.

Lord, I cannot change the past. I cannot change my tongue or my hearts propensity to forget how my words or actions might effect others. I cannot change anything on my own. But I can ask, I can beg, that you would take my heart and continue to teach it more and more grace. More grace, Lord. More and more Grace.

Rejoicing in the journey,

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