The Best Advice about school I was ever Told

When we first put Thad in school it didn’t go great. I had picked out this beautiful Montessori school and thought he would love it. Instead he screamed and threw tantrums everyday when I left. People told me it was normal and part of the process of learning how to separate. They told me it would stop if I waited it out. I knew in my gut something wasn’t right but I listened to those who said it would stop. It didn’t. He cried every day for 3 months. Then a dear friend gave me permission to listen to my own intuition. 

She said “Do you feel peace about the school he’s in right now?”

“No,” I replied right away.

“Well, then you need to listen to that and find something you can feel peace about.” 

I pulled Thad out of school and put him in a little one room Montessori preschool down the street. He still complained sometimes about going to school but he didn’t cry when I left and I didn’t feel that pit in my stomach. We had peace. 

We had a similar experience when we first put Sage into school and again I had to learn to listen to my intuition and follow peace. We pulled her out of the first school we tried within two days. When we did finally put Sage back in school we ended up with the best teacher and team I ever could have imagined for her. I felt amazing peace about leaving her. 

All this past summer I have again been wrestling with school decisions.

I knew I didn’t feel good about keeping Thad at the school he’s been at for the past three years. It’s a good school and we’ve been well cared for there, but I knew the 2nd grade teacher there wouldn’t be a good fit for him.

We looked at other schools. I toured other schools. I even started filling out an application for another school, but couldn’t bring myself to finish it. A few weeks ago I was wrestling through the decision with a friend and she gave me again the same advice I had heard from that other friend so long ago when I first put Thad in school. 

Sometimes I’m a slow learner. 

She said, “You just have to go with whatever option you feel the most peace about.”

At that moment I realized I didn’t feel peace about ANY of the options we were looking at. A few days later I learned about online elementary schools.

Thaddeus has been asking to homeschool ever since he found out homeschooling existed, but I didn’t think I had it in me. I just didn’t think I could do it with everything else in my life. But I was intrigued by online schools and started looking into it. I liked the idea of him still having a teacher and someone else he’d be accountable to rather than just me.

And as I started looking into it more I felt peace, a lot of peace. 

But I didn’t think Bryan would ever go for it – especially right now while he’s in so much pain. Doing online school would mean no break for us and we really like having breaks from our kids. 

When I told Bryan about the idea he surprised me, though.

“I like it. I think it would be good for Thad,” He said. So, we decided to look into it some more. 

Soon after that conversation we made the decision that Bryan would enter a cancer trial at UCLA and we would go back and forth between AZ and CA for weekly treatments for at least the next 3 months. That sealed it. We enrolled this week in Arizona Virtual Academy through K12. 

So far we’ve been impressed with the whole process. They communicated with us clearly and often throughout the registration period. The schedule is fairly flexible and they individualize the curriculum for each student through regular evaluations and conversations with the parents. His teacher called and introduced herself on Friday and was very nice and very understanding about the need for flexibility in our schedule as we’re traveling. This weekend three boxes arrived on our doorstep filled with books and other school supplies. Thaddeus loved exploring all the different supplies and was especially excited about the things they sent for science experiments. 

I know it might not work out. I might not feel peace about it a month from now, but for right now it’s clearly the next best step. So we’re taking it. 

If you’re struggling with that unsettled feeling in your gut about your kids schooling let me do for you what my friends did for me and give you permission to pursue peace. Listen to your intuition. You know your kids better than anyone. 

You don’t have to stick with something because it looks good on paper, or because everyone else is going there, or because it’s exactly the type of school you dreamed about for your kid, or because it’s where they’ve always gone. Follow peace, friends, that’s it. Follow peace. 

I’m also learning that intuition is not always rational. Taking Thad back and forth with us to UCLA and adding teaching him to my already full list of caregiver activities doesn’t make sense in many ways. But, I know it’s right for us for right now. Following intuition, following peace, following that still small voice of the Spirit, hasn’t always been easy in the past, and it hasn’t always been rational, but I can look back and see how the rational choice hasn’t always served me, but the intuitive choice has led me to good, time and time again. 

We’ll try to document our own online school journey a bit more along the way for any of you interested. 

Grace and peace,

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 Following Intuition and Taking Sage Out of School

I think the decision to put your child in school, and in which school, is always challenging for parents. We all want to do what’s best for our children. We want them to learn, succeed, be safe and happy.

Sending your child off to school always requires a great deal of trust. Suddenly your baby is out in a world that is unknown. You are no longer the only one protecting and guiding them. School is the first giant step they take away from you.

Every parent feels a tinge of sadness and fear, mixed with the excitement of freedom, as they hug their child goodbye on the first day of school.

But when your child has special needs, that sadness and fear is magnified tenfold.

I started having anxiety about sending Sage to school when she was barely one. In Seattle we were told that if she didn’t enter the public school system at three she wouldn’t get therapy. When we moved to Arizona we learned that because Sage got into long term care she was eligible for therapy even if she didn’t go to school. My relief was tangible. At least some of the pressure was lifted, but not all of it.

I still knew that Sage would get more therapy if she was in school than out of school. She would get more mental stimulation in school than out of school. She would get more social interaction in school than out of school. I felt I had to put her in school in order to provide these good things for her.

But, that didn’t make me feel better about sending her off.

How could I really send my non-mobile and non-verbal daughter into the world at only three years old? She can’t come home and tell me what happened at school. She can’t come home and tell me about the kid that bullied her or the teacher that scolded her. She can’t defend herself. She can’t even move from point A to point B on her own.

She is highly susceptible to illness and anytime she gets sick it disrupts her feeds, which has often landed us in the hospital.

She is vulnerable. On so many levels.

Throughout the summer, as her third birthday drew close, my unrest and unease grew. “We are doing the right thing, we are doing what’s best for her,” I kept telling myself. But I couldn’t quite believe it.

I thought it was just fear and I don’t ever want my decisions to be determined by fear. But today, in the quiet, it hit me like a ton of bricks. This feeling of unease is more than fear, that’s why I can’t shake it.

If it was just fear, then my self talk, reminding myself of all the reasons why school would be good for Sage, would help quiet my unease. But it hasn’t.

If it was just fear than facing my fear, sending her to school, having some of those fears become reality, would diminish the power of this uneasy feeling. But it didn’t.

As I drove Thaddeus to school I suddenly remembered, what I’m shocked I could have forgotten. The lesson I learned about intuition when I put Thaddeus in preschool.

The first school we put Thad in looked perfect on paper. It was a well known, well established, Montessori school in our area. The campus was beautiful, complete with a lovely garden the children helped tend. The owner of the school was a kind, structured, earth-loving grandmother figure. The teachers where knowledgable and highly trained. But I felt conflicted, torn, and uneasy the whole time he was there. I never felt peace about it. For six months I tried to rationalize away that intuitive feeling. For six months Thaddeus cried every single day that I dropped him off.

Then over Christmas break I finally listened to my heart, and to the voice of the Spirit that had been trying to get my attention. I pulled Thad out of that school and found another school for him. The new school was small, and much less shiny on the outside, but the teachers really cared about their students and Thaddeus did well there. He stopped crying when I took him to school. And I felt peace.

I realized today that the feeling I had with Thad at that first school is exactly the feeling I have about school for a Sage right now. I don’t want it to take six months before I listen to that feeling. I have too often ignored that still small voice and come to regret it. I want to respond more quickly now.

So, today I officially decided to take Sage out of school. Right away, I felt peace in regards to her schooling for the first time in months. I have to follow that peace.

Throughout the day I slowly came to realize ways that I could meet the needs of my daughter that school would have fulfilled.

I had a wonderful talk with a friend who’s starting a preschool co-op, which seems like it could help with my desire to give Sage more social stimulation. I talked with the pediatrician about a service in the area where the school district sends a teacher to the home of medically fragile kids for two hours a week to provide learning and mental stimulation. I got some necessary paperwork done so Sage can continue to receive physical therapy, occupational therapy, and speech therapy every week.

I worried that if I didn’t put my daughter in school she would be suffering and wouldn’t get what she needs. I don’t worry about that anymore.

Sage is thriving and she will continue to do so even outside of school.

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 Venting and Needing Understanding

Sometimes as a mama to young kids you just need to vent. It’s therapeutic.

You need to call up your girl friend, or your sister, or your mom, or send out a holler to all of your social media mama’s and tell them the horrible thing your toddler just did.

“He colored all over the wall!…With PERMANENT marker!”

“She smeared a chocolate all over the couch.”

“He threw a tantrum right in the middle of the grocery store. Everyone was staring.”

“She flushed a brush down the toilet.”

Oh, yes, we need to share these things. We need to share the sentences we never thought we’d say, the experiences we never thought we’d have, the things we never thought OUR kid would do.

We do it partly to express, to let off steam in a safe place, but there are other reasons we do it too.

We do it to for the encouragement. Like an athlete who is feeling weary and worn and looks to the crowd, because they need to know the crowd believes in them, you look to your crowd.

But, I think mostly we do it for the camaraderie. We need to know we aren’t alone. We need to know that others have been in this same place as we have been. We need to hear that they are in it too, or that they got through it. We need to feel like part of a team.

Or maybe I should say those are reasons why I vent about mama frustrations.

Sometimes I choose to share some of those frustrations on social media, usually Instagram since that feels more like an actual community to me. But sometimes I do it on facebook or twitter too. I do this because I want my social media to be an honest and holistic picture of my life and that means not just sharing the good stuff. It means allowing others to enter into the struggle with me. It’s the same way I approach this blog.

But, lately I’ve run into a problem with sharing and venting, especially online. I’m finding that sharing and venting about Sage doesn’t result in connection and camaraderie and often gets taken in a completely different way than sharing and venting about my son.

The other day I shared about a difficult day I’d had with Sage throwing lots of tantrums. I got lots of very kind responses, but something rubbed me wrong about the way people responded. I couldn’t put my figure on it until I realized how different the responses to my venting where from the responses to my venting with Thad when he was a toddler.

When I shared about a difficult day with Thaddeus I got some encouragement and a few “praying” responses, but mostly I got commissary and even humor.

I got “Oh my goodness that is too funny!”

Or “oh I know! My son did that too!”

Or “ugh I hate when that happens!”

Or “today my daughter did…”

I don’t get that anymore. And I guess I can’t. I mean it would probably be a little weird, and almost hurtful, if my friends with normally developing children tried to say that they know exactly what I’m going through. They don’t. So they don’t say that they do.

Instead I get pity and prayers.

It’s good intentioned, but it’s not really what I want in those moments. I want understanding and camaraderie.

And humor…I could go for some humor.

 

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

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…

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.