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.

A New Twist on Candyland

There has been a lot of heavy stuff in my life lately. And that has spilled over to a lot of heavy stuff on the blog. So, today I want to share something light and fun.

This weekend Thaddeus made up new rules for playing Candyland and I want to share them with you all.

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Set the board up as you normally would. Then instead of everyone drawing cards and moving to the color they drew, you draw all the cards at once and the child gets to pick what player gets what card. Thaddeus would draw three cards and then pick which card I got, which card Sage got, and which card he got.

This way of playing the game doesn’t do much to teach the child turn taking, but it does help teach strategy, thinking ahead, and consequences. Thaddeus had to think, “if I give the blue card to mom what happens?” and then had to think again “If I give the blue card to myself what happens?” This way of playing the game caused him to use critical thinking skills. It took a game that is typically about nothing but chance and added an element of control to it.

I will admit that it made the game less fun for the other participants (namely me), but I felt the benefit of having Thaddeus think this way was worth it. I think next time perhaps I would have us take turns getting to draw all the cards and pick who got what card. This would make it more interesting for all of the players and would incorporate turn taking into these new rules.

Well, there you have it a simple way to modify a game you already have into a new game to teach new skills.

Enjoy some play time with your kids today!

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.

Three Magical Child-free Days

I have been away from my children for a whole month, and I have a confession to make…

 

I’m not anxious for them to come home.

 

I miss them. I missed them.

 

I missed them like crazy when I sat in that quiet hospital room, while my husband slept the sleep that is only available to the drugged.

I cried watching videos of them opening Christmas presents without me.

I sobbed seeing pictures of their sweet smiles on Instagram.

I longed to hold them and hug them.

I missed them. But, I am not anxious for them to return.

 

Being home without our children for the past three days has been magical.

 

Having kids changed me. In fact, I found myself when I had kids. And yet ironically it wasn’t because I loved being a mom and realized it was what I always wanted to do. That may be your story but its not mine. I love my children, but I don’t love being a mom. I found myself when I became a mom exactly because I didn’t love it. I always thought that being a mom was my dream job – what I was made to do – but then I became a mom and realized that wasn’t the truth at all.

 

Perhaps having two very difficult children didn’t help. My children are beautiful and unique individuals. My life is better because they are in it. Personally I think the whole world is better because they are in it. But, they are difficult.

 

My son spent the first year of his life crying, and so did I. He didn’t sleep, and neither did I. He is active, demanding, and too intelligent for his own good.

 

My daughter, though sweet and gentle of personality, suffers from a severe disability that will effect her for her whole life. At two and a half years old she is still unable to talk, walk, or even sit up on her own.

 

My children are joys to be around, but they have broken me in every possible way. They have broken me and they have remade me. I like the person I am now, because of them, so much better than the person I was before them.

 

For me, part of that reshaping, was admitting and coming to realize who I really am. What roles fit me and what ones do not.

 

I thought that I would be like Cinderella. I thought that motherhood would be the glass slipper that fit so perfectly it carried me off into my happily ever after. But, when I tried on the shoe of motherhood I learned something about my own feet. The shoe didn’t fit very well. But it was only through trying on that mythical glass slipper that I could find other shoes that fit better.

 

Motherhood limits your time and freedom so severely that it forces you to get focused about what it is that really matters to you. It forces you to find some focus about the shoes that do fit, the shoes you do want to wear.

 

It took me a long time to admit that I don’t love being mom. Even writing this I feel a pain of guilt and fear. Perhaps in confessing this I will loose some of my audience. Perhaps you will judge me as I sometimes judge myself. As women we are suppose to love being mothers and if we don’t, well, we should never admit that out loud. So, here I am admitting to you my dark secret. I don’t love being a mom.

 

For an introvert, who longs for deep conversation, being a mom to young kids is hard. For a woman who loves her husband and longs to spend long hours of uninterrupted time with him, being a mom, and constantly having to divide my love, is challenging. For a writer who wants to pour over the written word and create page after page of text, having young kids can be mind sucking. For a control-freak who likes to dictate her own schedule, well…you get the idea.

 

I can remember very clearly what it was like to be childless, galavanting around Europe with the love of my life. From the first day my son was born I could clearly envision the time when he would leave and Bryan and I could again be just the two of us. For me, this was the hardest part of Sage’s diagnosis. When the doctors said that she would never live on her own I was robbed of that future – the future where our children had grown and Bryan and I were again alone together.

 

These past few days have been magical for me because I got again what had been stollen from me – once when Sage was diagnosed and then again when Bryan’s cancer prognosis worsened. I thought that I had lost a future in which Bryan and I could enjoy life alone together, but this weekend I had those moments alone with Bryan returned to me – if only for an instant.

 

It was magic and I’m not ready for it to end, especially because I don’t know when days like this will come again.

 

We will have days without children again soon. Bryan and I already have tickets for our next trip to DC. We leave in just over two weeks for a four day trip. That trip will be filled with blood work, scans, and long discussions with doctors. Sure it will have moments of fun, moments of laughter with friends, but it will not be a dream vacation without children. It will not be like the past three days.

 

Because we need to leave our children so often for doctors appointments and trips to the National Institute of Health, I feel like we have used up all of our free babysitting time. I feel like it would be psychologically damaging to both our children and the people watching them for us to leave them for a weekend away together, or a weekend at home together (which I actually prefer), without a reason. We leave them too often with a reason already.

 

I don’t know when a weekend like this will happen again. And so, I find myself hours before my children’s return, wanting time to slow down, despite the fact that I have often longed to rush to them and sweep them in my arms over the past four weeks and been unable. I miss them, but when they return I will miss this time as well.

 

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.

God and My Three Year Old

“There is no God.”

The words fell heavy in the room. A cringe of shock shook me and I’m sure a rush of blood flooded my cheeks. Embarrassed, I averted my eyes from my parents. And tried to respond as slowly and gracefully as I could.

“Well, Thaddeus, mommy and daddy and Nona and Boppa believe that there is a God. But, you get to choose what you believe.”

We were sitting at the table about to have dinner. My dad had started to pray and my son had, as always, interrupted with screaming, “NO! I want to pray!” My dad said ok and my son preceded to pray the same prayer he prays every time,

“God our father, thank you for the food. Amen”

On this particular day I was feeling a bit frustrated with his repetitive, shallow prayer and decided to take it as an opportunity to have a conversation about prayer.

“You know what, Thaddeus, we can thank God for more than just the food.”

A chorus of suggestions sprung up from around the table.

“Like the cousins”

“Or grandma and grandpa”

“Or baby sister”

I continued, “And we can also pray about things we feel, or things we want. God wants to hear about all of it.”

I had barely gotten out the last sentence before he was yelling “No!” again. And just as my voice silenced his words fell echoing across the table,

“There is no God!”

He said it with the conviction of a full grown atheist who’s made the argument a hundred times. There was passion in his voice.

I used to think that children’s spirituality mimicked their parents until they reached a certain age at which point they would have to wrestle with their beliefs and come to their own conclusions. If their parents said there was no God they would believe that. If their parents said there was a God their belief would follow their parents.

If a child told me “There is no God” I would wonder where they heard that and who they were parroting. Now I know differently.

Bryan and I would never tell Thaddeus there is no God. None of our family would tell him that. He’s been to church, learning about God, since he was a baby. Most of our friends have at least some form of belief and spirituality. He is not parroting. He has come to this belief on his own.

At three years old his little mind insists that there is no God.

But I sense something different in his heart. His heart seems scared of God.

And that breaks my heart even more than his statement of disbelief.

Because I know that fear. That fear of punishment. That fear that if God exists he isn’t good. He is harsh. He is vengeful. He is not safe. He is something to fear.

I felt that fear. It was the defining characteristic of my spiritual life for most of my childhood. And it still rattles and drives me at times.

For me that fear drove mto trying to be the perfect Christian. It drove me to pray “the sinners prayer” while trembling in the shadow of the hell that I had been told awaited me. Ultimately that fear drove me to God, but it also meant that it took me a long time to find the grace and love of God. At times when I feel that fear I still fight the desire to try to perfect myself for the sake of protection.

It has been a long journey for me to come to a place where I can experience and know that God is love.

I see that fear in my son. And yet, I see in him an attempt to alleviate that fear through an entirely different path than the one I took.

He is trying to relieve his fear by determining there is no God. By deciding that God doesn’t exist. By refusing to let me pray with him any time I attempt it apart from meals, by keeping prayers at meals shallow and without heart. By yelling anytime I talk about God.

His little heart is hiding.

And a part of me is glad. Perhaps his fear driving him away from God will enable his journey towards God to be led by love instead of fear.

But, a part of me fears where this path may lead if he continues on it. In my fear I tried to save myself, and having maintained a “good Christian” status most of my life grace took me a long time to learn. But, the path I took protected me from some pain and harm. I don’t want my son to have to experience that harm in order to find his way to God.

Part of me is also confused and frustrated. How do you share your own theology and spirituality with a child who refuses to have anything to do with God? How do you teach him the love of God? How do you show him the grace of God?

This is all so new for me. And not at all what I thought it would be.

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.