A Newly Felt Grief

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,
Bethany

If you'd like to help with medical bills or the other expenses related to Bryan's cancer or Sage's special needs click here. Thank you! We are forever so grateful to so many who have gotten us this far and continue to carry us forward. Grace and peace.

On Getting Wheels and Becoming a Toddler

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,
Bethany

If you'd like to help with medical bills or the other expenses related to Bryan's cancer or Sage's special needs click here. Thank you! We are forever so grateful to so many who have gotten us this far and continue to carry us forward. Grace and peace.

Running Free

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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…

someday…

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

That one day…

someday…

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

That one day…

someday…

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

 

Rejoicing in the journey,
Bethany

 

If you'd like to help with medical bills or the other expenses related to Bryan's cancer or Sage's special needs click here. Thank you! We are forever so grateful to so many who have gotten us this far and continue to carry us forward. Grace and peace.

She Walks A Different Road

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“Your daughter’s head is measuring a little small.” The pediatrician leaned against the counter as she said the words.

My two year old son wiggled in my lap as my husband bounced our smiling two month old daughter on his knee. There was an accepted chaos in the room. My son reached for the jar of wooden tongue compressors and cried as I pulled him away.

“What does that mean?” I asked. Two days before I had a terrifyingly vivid dream that something was wrong with my daughter, it was the whole reason I had made this doctors appointment. I inhaled deeply, sealing myself for the worst.

“Well, we don’t know yet. I’d like you to take her to see a neurologist.”

That was the beginning. A few weeks later we would see a neurologist who would tell us our daughter had microcephaly, which just means that her head is measuring abnormally small. He was reassuring, telling us that there are lots of things it could be. He recommended an MRI. We moved states and went to another neurologist. They told us she was showing definite delays and recommended getting her in early intervention. Eventually, my tiny daughter was given an MRI under anesthesia.

At our next appointment we got the official diagnosis: bilateral polymicrogyria. Almost six months had passed since that pediatrician appointment were red flags had first been raised. We had lots of time in-between to let the new information sink in, to adjust to our new reality. And we had a smiling, happy, adorable baby, who would lock eyes with us and let us know it was all going to be ok. It was hard to imagine wheelchairs and speech devises when holding such a tiny buddle of pure joy. The reality of what her diagnoses would mean felt far off and with everything else going on in our lives it was easy to push it off even farther.

Now it has been almost two years since we first heard the term polymicrogyria. But, in the past two months there have been a few things that have happened that have brought me face to face with the long term reality of what it means to have a daughter with severe special needs.

First, my daughter was accepted into Arizona Long Term Care. We are so thankful that Sage was accepted into this program. It will enable us to give her the best possible care and will help so much with therapy and expenses. But, as I looked over the paper work one day and talked to one of our therapists about it, something struck me – they are essentially determining if my daughters disabilities are severe enough to be institutionalized. That’s how severe she has to be to qualify. Well, Sage didn’t just barely qualify, she qualified “with flying colors” so to speak. She fit every criteria. Sure we had been told to down play some of her strengths so that we could get in and I definitely didn’t celebrate all the little victories with the evaluator, but I didn’t lie at all. I told them the things she does and the things she doesn’t do. And we got in. I am so very glad that we did, but it made her diagnosis feel more real for me. It made it all sink in a little more.

My daughter was also put on a feeding tube in the past few months. At the moment she gets all of her calories from formula that goes straight into her tummy through a g-tube. This is also another really great thing. She is finally gaining consistent weight! Meal times are no longer a struggle. She is getting the nutrients and calories that she needs to help her body and brain thrive. And I am so grateful! But, it is a constant reminder every time I look at her that she is not normal. She walks a different road.

This month we also went to see a new neurologist for the first time since we moved to Arizona. It was at this appointment that we first heard the term cerebral palsy applied to our daughter. The doctor explained that cerebral palsy is a broad category term that applies to anyone with brain injury or malformation that effects muscle and motor development. What Sage has is cerebral palsy. 

In some ways it’s been nice to have this new term for my daughters disability. When I used to tell people that she has polymicrogyria they would look at me with blank stares as if I was speaking another language. When I use the term cerebral palsy people understand. They have some image or idea in their head of what that means and instead of saying, “what’s that mean?” they tilt their head and smile sympathetically. In some ways, that is nice. It’s nice to not have to explain and to have instant understanding. But, in many ways this new term has been incredibly difficult for me.

For the first time I understand why some people don’t want their child to have a diagnosis. For the first time I understand the argument that a diagnosis puts your child in a box. I feel like Cerebral Palsy puts Sage in a box. When I hear cerebral palsy I don’t think of hope and possibilities and a broad spectrum of ability levels (although I probably should). Instead I think of people I have met who had cerebral palsy. I think of wheel chairs and curled fingers. I think of speaking devices and weak neck muscles. And I feel like crying.

It’s been almost a year and a half since my daughter was diagnosed, but it’s only been this month that I have really begun to feel the weight of her diagnosis. I am only beginning to grieve the dream I had for my daughter that is now lost. I am only beginning to grieve the life that she could have had that is now gone.

In quite moments alone with her I wonder what she would have been like if her brain worked the way it should. When she obstinately demands a certain toy, when I ask her to do something little and she does it, I grieve the brilliant powerful woman that she could have been. I know that she is still brilliant and powerful. I know that there is so much going on inside of her that I only get glimpses of and I know that God will still use her and shape her in amazing ways. But, right now I just have to grieve, because it’s different – different than I wanted or expected, or even than what I originally hoped when she was first diagnosed. She walks a different road.

Rejoicing in the journey,
Bethany

If you'd like to help with medical bills or the other expenses related to Bryan's cancer or Sage's special needs click here. Thank you! We are forever so grateful to so many who have gotten us this far and continue to carry us forward. Grace and peace.

More Thoughts From Hospital Beds

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The room is quiet and dark. Sage just finished one of her classic crying fits and is finally sleeping calmly on my arm.

Light from the nurses station shines through the large glass sliding door despite the flimsy curtain that has been drawn shut. I sneeze into my elbow trying not to wake Sage up. My head feels twice as big as normal. It hurts to swallow. I just want to be home in my own bed.

Why did I rush Sage down here again? Frustrated with myself, I run through the events that led here. The five days of vomiting and not tolerating her Gtube feeds, the congestion and rattly cough, the seven days without pooping while on a laxative. They ran a bunch of tests in the ER which all came back normal. But they don’t want us to leave until she starts tolerating her feeds again. It sounds like we might be here awhile.

As I sat in the ER earlier I found within myself a shocking desire: I wanted something to be wrong. With each test that came back normal I felt discouraged instead of relieved. Something is wrong with my baby – she spends most of the night crying, she is nearly always constipated, she struggled to gain weight and now that she’s on the Gtube she struggles to tolerate her feeds. There’s got to be something wrong.

So I wanted them to find something. I wanted it to be a bowl obstruction that they could fix and suddenly make everything better.

I actually sat in the ER hoping that something was wrong, so that it wouldn’t be a worthless trip, so that they could just fix her, because I feel like she’s broken.

How messed up is that?!? I mean I’d rather have it be something serious, something that they can give her medication or a surgery for, than something non-serious that will resolve itself in time.

I want a quick fix and an easier life. I want to suddenly have a child who sleeps perfectly at night and gains weight normally and doesn’t throw up a couple times a week. But life isn’t perfect.

And when it comes down to it there is something irreversibly “not right” with Sage and there is no quick fix. She might never sleep well, just like she might never talk or walk. She might regularly end up in and out of the hospital for feeding problems. She might never out grow this or out grow needing this much attention. She is not ever going to be that normal perfect child.

I look down at her, so peaceful and calm, and large tears roll out of my eyes. A sob catches in my throat and she stirs. Arching her back, as if to try and crawl out of her own skin, she cries. I try to calm her, but she pushes away from me in pain. I pick her up and stand beside the bed, tangled in the IV tube, I rock her slowly in my arms. She arches her back again and pushes away. I set her on the bed and she wiggles and thrashes as she cries, and then, just as suddenly as it started, she rolls on her side in perfect calm and sleeps again.

This, crying in hospital beds, sleepless nights, feels like its my life now.

With my son, Thaddeus, I was not this mom. I was not the mom that rushed to the emergency room. I trusted my intuition, I trusted my son’s body and his ability to heal and grow out of things. Even in the midst of two long years when he didn’t sleep at all, I trusted that it wouldn’t last forever. Even in the midst of bad fevers and illness, I trusted that he was capable of healing and that I was capable of helping him to heal. But with Sage I have lost that trust – that confidence. I don’t know what her body is capable of doing and isn’t capable of doing. I don’t know if she will ever out grow the sleepless nights – she might not.

The understanding of what my daughter’s diagnosis will mean has come upon me slowly. It has sunk in one step at a time, comprehension dawning on me more and more at different points in our journey. Today it all sunk in a little deeper. And it’s hard. It hurts.

Sometimes I feel like it’s not that big of a deal that Sage has special needs. For the most part I feel like I’ve handled her diagnosis in stride, but there are moments when it all catches up to me. Moments when the only identity I feel any ownership for is that of “caregiver”. Moments when the reality of her situation, and mine, as her mom, really hits home. Today was one of those moments.

Sage isn’t fixable. There is no quick easy fix for her diagnosis. Her issues with sleep and eating, her developmental delays, could very well be life long. I can’t magically make her perfect. But she doesn’t need to be. She is broken, but God is perfect. And that’s the truth for all of us, isn’t it?

Rejoicing in the journey,
Bethany

If you'd like to help with medical bills or the other expenses related to Bryan's cancer or Sage's special needs click here. Thank you! We are forever so grateful to so many who have gotten us this far and continue to carry us forward. Grace and peace.