The Journey to Rest

Ever feel like a hill will never end? That’s how I have felt for years. It began even before Evan was born.

As time went by, I wondered if Evan was behind…he was so much smaller than others and had so much catching up to do. Fast forward to our nine month checkup and we started the evaluation process for First Steps. We also set up an appointment with a developmental pediatrician when he was about 18 months old. ENT came next with tubes placed when he was 20 (I think?) months old. Neurology came then in April with an MRI in June. Finally, we had a diagnosis. I contacted Family Voices the day after. Applied for the medicaid waiver and waited.

At the interview, the lady talked with us about respite hours that were available to us before the waiver would go through. I didn’t think I needed the help or the hours because Evan doesn’t require much medical involvement.

If you have never applied for the waiver, you are in for a shock. You would think that a child with a disability would immediately qualify and receive extra financial support. To give you an idea, ONE speech session (depending on what was focused on – feeding therapy, oral motor, verbal, etc.) ran about $900 before insurance. And this was only for 45 minutes.

We waited. I e-mailed or called once a month to see where we were on the list. At the time we applied, it was about a nine month wait. We applied in June. In April, I received a letter letting us know we could now apply for the waiver. Apply.

We weren’t finished yet. Thankfully, after talking with a few people, forms were filled out and an interview was set up. Then we waited again.

Almost a year to the date of applying for support, we received his card in the mail informing us that his Medicaid support would start in July and it was retroactive for three months. Three…we had waited twelve.

The waiver not only assists us with therapy costs, it provides a budget that can only be spent on certain things. Respite is one of them.

We picked a company to work with and then hired a few people (some we knew and some college students) who would be trained by the company and then be with Evan so my husband and I can go on a date, or clean house, run errands, go to the doctor, or just have a break.

It has been the best gift. Currently, as I type this, there is a college student downstairs who makes Evan laugh and gives him energy that I just don’t have some days.

It took almost a year and a half before we were able to use these hours. A year and a half.

If you know someone who has a child (especially a child with a disability), check in on them. Ask if you can drop off a meal. Ask if you can bring them a coffee. Ask if they want to take a walk or take a nap and you hang out with their child (if you’re able to due to COVID – we have had a very tight circle because the more exposure puts us at risk of losing precious in-person therapy sessions). Or even just see if they want an adult conversation on the phone or on the porch.

Thank you

The other day in the preschool car line, I wanted to thank the other drivers. Only a few of them know some of Evan’s story. Most have no idea. I get out and unbuckle him, put on his coat, and his backpack and send him into school and silently send up a thank you to the many cars waiting on me. I don’t get Evan out ahead of time (here comes my six enneagram), because if we were accidentally hit during this line, Evan wouldn’t be able to tell me what hurts. He cannot get out quickly of his car seat, so I am there to help. He cannot manage the big step down yet, so I am there to lift him out. He cannot put on his own coat yet, so I am there to assist. So, thank you for waiting on us. Each and every day.

On this journey, I am realizing there are many people that need to be thanked.

Thank you to the therapists who sometimes can’t answer my questions of the future, but still give hope. They give me countless ideas at home and look at what he can do and what he will need to be able to do and plan out his therapies.

Thank you to our caregivers who provide my husband and I respite. The laughter that comes from Evan when he is with them is priceless and I am so thankful for such an amazing team! They truly care about him and it is evident every time they are with him.

Thank you to our family. They continue to love on Evan, provide respite as well, encourage me, and even help with exercises for therapy.

Thank you to our village, both in person and online. I have friends who understand why I can’t get together with them. I have group chats that let me vent and share the good and the mundane. I have people who respond to our photos and stories and encourage us. Thank you to the families who have gone before us and provide hope, encouragement, a safe place to cry, and resources that have helped them.

Thank you to random strangers. Due to Evan’s low tone and sometimes not being able to tell his body what to do (motor planning), putting him into a shopping cart has become a little harder. It is not always convenient for him to walk in the store. Lately, I wait until I find someone who might be able to help me (I do make sure they are wearing a mask properly). I explain why I need help and everyone has been wonderful.

As you are reading this, I hope you found yourself in one or more of these categories. Thank you. Two little words, but there is so much behind them.

My Word

I may teach not to have all or nothing thinking, but I struggle with it. Last year, I joined a decluttering Facebook group and while we were learning her method of decluttering and the schedule, we were to only work for 30 minutes. No more. She kept repeating, “Progress, not perfection.”

I gathered what I needed, set the timer, started the music and began to work. When the timer went off, I was proud of what I had done and realized I was almost done. I could finish…it wasn’t much more time and I wanted it to be done. And there it was. I didn’t want to stop in the middle of it because I wanted it to be done. I wasn’t okay with progress. I wanted perfection.

My one word to focus on in 2021 is progress. It’s defined as “forward or onward movement to a destination.” I have a lot of projects I have started…and not finished. I like growing and learning and improving. But I get hung up with it not being done completely and overwhelmed and then I just stop and shut down.

So, progress…in my projects, in my health, in my friendships, with Evan, in my marriage, and my relationship with Jesus.

Last day

It’s the last day of the year. I only know because I looked at my Fitbit.

2020 was hard and good. I’m learning from several sources that you can hold both the hard and the good.

I learned that I desire one good conversation a week with a friend. I learned that Evan does better for therapists at the location than for me during teletherapy. I learned that my anxiety does nothing for me. I learned that when I don’t know what to do next, I breathe.

I learned that I have a larger village than I realized. I learned that reading a book at night helps me rest. I learned to listen a bit more. I learned to let Evan go at his pace and do what he loves to do. (Maybe I’m still learning that one.) I learned that walking truly helps and that I need to make it a priority.

I’m excited for 2021. I chose a word for the year and am looking forward to focusing on that.

Thirty

Along this journey of raising a child with a disability, I keep learning.

Just because your child has something in common with another child does not mean you will be friends with the parents. Just because they both have a disability, does not mean the struggles will always be the same. They might be, but there are probably some differences.

I’ve met some amazing parents who have a child or children with disabilities. They have been supportive, a listening ear, a shoulder to cry on, a friend to walk with, and an advocate. Some of them have even come friends.

This year has brought a lot of changes. I’m adapting to some and floundering with others. This year has shown me how much I enjoy getting together with others. I enjoy some sort of interaction with someone else, even if it’s just a walk outside.

Today was a gift. It was short, just thirty minutes, but a gift nonetheless.

I met a mom years ago who had triplets and one (at the time) was receiving First Steps. She understood the therapy life. That outside life happened outside of therapy and exercises. We both have hard, even though the hards are different (Her two other children also receive therapy now).

Today, we were able to sit together in a van (both wearing masks).

She talked. I listened.

I listened. She talked.

We drank coffee.

We laughed.

It was exactly what I needed. A mom who not only understands a bit more, but also a friend.

My heart hurts

My heart hurts…

It hurts for teachers and students who still don’t know what will be happening when an established routine and community can be the catalyst for amazing learning.

It hurts for the division I am seeing on the news and Facebook. What brought us together in the first place is now ripping us apart. I am saddened by comments I see people make.

It hurts for the leaders who can’t seem to do anything right in half of the population’s eyes. They are people too. All of them.

It hurts for my son who remains very much isolated because of the possibility of therapies cancelled if he is around people who test positive for the virus.

It hurts for myself. I’ve given up visits with friends, eating out, social get togethers because, once again, it could affect therapy for my son.

It hurts for people who won’t listen. And maybe I’m guilty of it too. I’m trying not to be. Honestly, it makes me want to stop getting on Facebook. It’s not overly encouraging these days.

What’s healing my heart?

Enjoying the amazing things my son can do. He can recite the alphabet (some of the letters between j and o still get left out every now and again). Exercising. My son will even count my reps for me. Taking lots of walks. Lots of them. Reading. Follow me on Goodreads, you’ll see. Taking moments to pause and breathe. Really helps with the stress.

I’m okay if you disagree with something I’ve said or written. If you’re up for chatting, I’m here, and I’ll listen. I just ask that you do the same for me.

Starting Small

I’m over the moon excited! I get to be part of The Lazy Genius’s launch team for her book, The Lazy Genius Way, which comes out August eleven.

Her podcast has challenged me in so many ways as well as gives me a fresh voice and perspective. One of her principles is to start small!

And if you’ve read my other posts, you know my love of reading. So, it would be normal to be reading another book while I am devouring my digital copy of The Lazy Genius Way. I’m also reading, Better than Before, by Gretchen Rubin, which is about habits. I am just getting started and my brain is overwhelmed…there are so many things that go into why we create habits and how we go about creating them.

I am currently in the middle of a LOT of projects. Evan’s preschool binder. A crocheted afghan. Catching up on documenting Evan’s milestones through the pictures on my phone. Keeping up on all of Evan’s goals. Clothes for kids’ market. Keeping the house clean. Menu planning and cooking and cleaning the dishes and doing it all over again three times a day. Reading several books. Cleaning up e-mail.

I am starting small. Starting with Evan’s milestones. I used to try and do a week’s worth of photos a day. Or ten minutes a day. Or work when we were at therapy. Small tonight means two days.

My routine will consist of putting Evan to bed, turning on Pandora to an instrumental station, and writing two days worth. If I do more, I do more. But two days.

And that’s what I did. It’s a start. It’s a small start. But that’s the best beginning.

My system

Recently, I asked Facebook how many books were too many to read at once?  I was currently in the middle of five and technically, I am reading more than five right now, but two of them are only picked up very sporadically and can be read that way, thankfully.

I gifted myself time on my to-read shelf on Goodreads and used our curbside pick-up from my local library since I had cleaned the house the other day.  And begins another reading journey of balancing different books.  

One Facebook friend asked how I can keep them straight…I consider it a gift and a curse. I listened to a podcast by the Lazy Genius the other week about her reading life and it reminded me a lot of what I did and as I have changed my reading habits.  I blame Anne Bogel, the creator of “What Should I Read Next?” podcast.

I often start my morning with a devotional (currently The Resolution for Women by Priscilla Shirer) which is short and then a chapter or two of another spiritual book (currently Chasing Vines by Beth Moore – having to push myself through the book a bit faster than I would want because I do not have any renewals since it’s a new release).  I then use my morning and sometimes afternoon hours when I can catch a few minutes another non-fiction book (currently rotating between Becoming by Michelle Obama and Elizabeth and Hazel by David Margolick – it’s about the Little Rock nine in 1957), and then I rewards myself with my fiction book in the afternoon and evening (currently Ladies of Ivy Cottage by Julie Klassen).  

You can see from my stack that I am well prepared for the next few weeks.  

It works for me…tell me about your reading life.  

 

 

 

Anatomy of a Nap

Naps have changed and evolved since Evan tumbled out of the crib a few months ago. The first few times being in the cot, he stayed right there. And then came the adventures.

Books pulled off the shelf. And by books, I mean every. Single. One. Stuffed animals pulled out of the basket. Pillows thrown again and again.

I earned my flights of stairs from Fitbit just by walking upstairs to put him back into the bed.

Lately, we’ve settled into a routine.

1:53 pm. Look at books. Sometimes I take them to my bed. Not today.

1:54 pm. Lie down. Am
I tired?

1:55 pm. Nope. What’s going on under the door?

1:56 pm. Not much happening. What could I go do now?

1:57 pm. Back to my books.

2:00 pm. Decided to look thru a dresser drawer. Mom told me to stop and go back to bed.

2:11 pm. Clean and dry now (thanks Mom), so off to dream land I go!

Neighbors

One of the hardest things about leaving a community where you spent the majority of your life is exactly that. The community.

Moving to a new town meant new everything. New neighbors. New church. New friends to walk with and hang out with. New faces everywhere. Yes, I can still drive and see my friends. Yes, I can call and text them. But it’s also not the same.

One of the new things I am thankful for is the work that my husband and I put into getting to meet and know our neighbors. After we met them, we added their names to a map I had drawn. I made it a point to say hello, to talk and get to know them.

I’m grateful for them. I have friends I watch The Bachelor with. I have friends who let our son sit in their sandbox and play for however long he wants. I have friends who buy a cookie at a bakery because it’s perfect for our son. I have friends who bring a full bowl of pho rather than a tasting of the broth that I had asked for. I have friends that I walk with. Friends that make our evening walks longer simply because we stand on the sidewalks talking. I have friends that share educational wisdom. I have a whole village that has cheered on our son.

It is so much more than I could ask for.