Becoming her Mom

#2: The most beautiful sound…

I reread this post from over 6 years ago. I’m so happy I took time to write down this memory. As I read it, I cried. I cried quite a bit as it brought back so many memories, emotions, and the visceral experience flooded my body.

I remember being so terrified.

I remember feeling ALL ALONE.

I remember not seeing her. Alex told me she was beautiful. Alex said she was huge. Alex was the first one to see her.

I remember his agony. “Who do I go with?” For the 1^st time since marrying me, he had to choose. Do I go with my daughter to the NICU or do I go with my wife to post-op?

I remember saying, “Go with her! I am fine. Go with her.”

Then, I don’t remember.

I don’t remember what happened between him leaving and my waking up in the recovery room. I don’t remember being stitched up. I don’t remember being transported. I don’t remember the first moments of being a mom.

I don’t remember holding her and welcoming her into this world…because I didn’t.

I don’t remember letting her feel my skin and hear my voice…because she didn’t.

I don’t remember looking into my husband’s eyes as we basked in the glow of our new baby girl…because I didn’t.

I woke up and Alex was there holding my hand. And, I do remember telling him to go back to be with our daughter. I suppose it was the beginning of always giving everything to your child. “Go with her” I said again. “Be with her. She needs you.”

He stayed with me for a while but then, as he should, he went back to be with our daughter.

I don’t remember being transferred to my room. I don’t remember a lot of those first few hours.

However, I do remember feeling along again. But, this time, the alone feeling was from not having my Teal inside me. For the 1^st time in nine months, she wasn’t with me. And, at the same time, I didn’t fully comprehend that I was a mom. It was a very confusing time.

I remember looking down at my smaller stomach and feeling very confused. Torn. Lonely. Alone. I wasn’t a mom yet. That’s what I remember feeling. She is gone, but I’m not a mom yet. She is of this world, but I am not a mom yet.

I didn’t get to see her for over 8 hours. Our NICU, for whatever reason, won’t let mom’s visit their children until they can walk on their own into the facility. I am highly sensitive to any form of drug and thus, couldn’t actually feel my legs or pelvis for a very long time. Eight hours long. It was pure agony.

However, there are moments I remember that I know have impacted our family positively. Alex was the first one to learn about her. How to “handle” her, how to not “handle” her. He told me how small her diaper was and that he learned about the bag she was in for warmth. He taught me how to wash my hands before going into the NICU. He walked me to where she was. And, for a woman who is often in charge and giving the commands, I know that those sweet moments he had with Teal before I arrived helped to shape their bond from day 1. And for that, I am forever grateful.

I will always remember holding her for the first time.

I will always remember being so shocked by how small she was on my chest.

I will always remember her heat.

I will always remember looking into her sweet, beautiful face with utter amazement and pure joy.

I will always remember smelling her.

I will always remember hearing her tiny breath.

I will always remember lightly touching her dark brown curls.

I will always remember asking her what she wanted to be called.

And, I will always remember when I became a mom, Teal’s mom.

Jen

Having Balance

In my class with Maureen Burford, we are currently working on our 2nd chakra. This is what Ellen Tadd refers to as the Identity Chakra. This chakra focuses on many things but the area I want to discuss today is balance. In her books, Ellen describes how this chakra supports action and pausing, movement and stillness, pushing and pulling, stimulation and support, masculine and feminine, growing and planting, talking and listening.

I realized when reading these chapters that it is our job as parents to support both of these sides. The receptive and the expressive sides of our children need to be nurtured.

For example, when I was a child, I was told by my parents and teachers quite often to stop talking. This does not shock anyone who has read my posts over the years or who has listened to me yammer on the podcast. However, these words did impact me quite negatively. I found myself not speaking up for myself when I needed to which then resulted in me pushing too much at inappropriate times. This happened frequently with my parents…outbursts, slamming doors, tears.

As I look at this chakra and then the concepts of yin and yang (that’s basically what Ellen is getting at), it is so important to look at the opposite of what your child is doing and use that as a starting point to influence behavior and support growth. My parents and teachers could have said, “Jen, listen more.” Rather than “stop talking”…see the difference, feel the difference? It is so much more instructive and I can feel a younger version of me learning in that situation not feeling shamed.

So, how does this relate to Teal and your child? Let’s list out the things we want to see more of in our child. If I want her to talk more, what is the opposite of talking? What is the yin to the yang? Talking…listening. So, I am going to positively support her for listening. I might say, “Teal, I am so impressed with how well you are listening to me right now.” And then a few minutes later, I may ask her to also use her voice. Describing the sometimes it’s important to listen and sometimes it’s important to speak and express yourself.

Another example, I want her to stop swinging her arms when she’s frustrated. This often leads to hitting or smacking me or others and may be a problem in the future. So, what is the opposite of swinging her arms? Stillness in frustration. I hope in the future to say something like, “Teal, I really love how still your body is right now when I know you are frustrated with ______________.” And then, after a few minutes I might honor when she uses her body to express herself in a positive way…like pointing, using signs, etc.

This is a work in progress for me but I thought I’d share with you some ways I am hoping to positively impact the world my daughter lives in.

Next post will be on the balance of spiritual therapies and physical therapies! Stay tuned.

Opening Your Crown Chakra in the Morning

I am currently in a class with Maureen Burford from Creative Lives called Foundations 1. We meet each Tuesday via Zoom to discuss the assigned chapters in two books by Ellen Tadd: The Wisdom of the Chakras and A Framework for Wise Education. This is like a graduate level class…we have mandatory writing each week. And since I’m writing for Maureen, I thought I’d share my thoughts with you.

My primary focus over the past week with Teal was to be more aware of my crown chakra (7th) to then be open to her crown chakra (7th).

When I slowed down throughout the day to feel my crown chakra, I noticed that mornings were a tough time for me to feel open and inspired. The stress of the morning, the schedule, the time constraints, the lack of control over a 7-year-old all contributed to a closed chakra.

Then, I remembered that inspirational music is a great way to “pop the crown” open. Alex had played “Thunder” by Imagine Dragons one morning in place of my standard Mozart…much to my dismay. However, when looking back on that experience, I felt lighter, more free, bouncy, and energized. So, there I was asking Alexa to play “Thunder.” And I immediately began bouncing up and down, dancing around the kitchen feeling the top of my head lift off. Success!

I also want to be more aware of Teal’s crown chakra. So, after taking my time this morning to meditate and automatic write, which opens my crown and sets me on a great path for the day, I went upstairs to wake up Teal. That’s when I realized I had a chance to help Teal open her crown before she even got out of bed.

For whatever reason this morning, Teal was very groggy. Slow to get up and certainly not her normal smiley self at 7 am. She wanted to cuddle longer than normal and wouldn’t get out of bed when I asked her. Now, I normally would have just picked her up out of bed and said frankly, “We gotta get going, Teal.” I would have taken control and forced her to get out of bed and start her day.

However, today, I realized I had a choice in helping her to start her day from a better place. When she asked me to cuddle. I cuddled. I did a few things with the comforter that I know she loves and makes her smile. I slowly tickled my fingers up her body to help wake her up. I held her with no intention other than to feel her sweet body against mine softly breathing. And that’s when I felt her smile. I felt her begin to wake up her crown and find joy in the morning.

Such an easy way to let go of control to give her a better morning.

And, to take it a step further, when I put on Thunder this morning, she asked me telepathically to put Mozart back on. I find this very interesting. Her Crown must like Mozart better than Imagine Dragons. I’m glad I was present enough with her to hear her message.

5 Things

In a recent conversation with my mom (we were recording an episode for the podcast at http://www.ForOurSpecialKids.com), she reminded me of the importance of 5 things.

Years ago, I would wake up each morning and write 5 things that I was grateful for in a notebook next to my bed. Just an easy 5 things. It started my day on a wonderfully positive note and I encourage you to try it.

Here are my 5 things for today:

Waking up with my kitty purring next to me
The taste of hot coffee with cream made by my husband
My morning meditation
The morning colors on the lake
The outstretched arms of my Teal when she woke up

If you can take 30 seconds to honor 5 things you’re grateful for today, your entire day will benefit.

Smiles…

Did you know I started a podcast called For Our Special Kids?

Each week I highlight a certain special person who is doing something amazing in our world of parenting a child with special needs! It might be a specialist, a parent, an author, a “WooWoo” healer, medium, psychic, etc. We talk science and we talk woowoo! It’s so much fun.

In every episode, we celebrate the magic and the mess of raising a child with special needs.

You can find all of the episodes since April 2022 on any of your listening platforms!

To learn more about Teal and our journey, go to www.ForOurSpecialKids.com.

Thanks so much for being a part of our journey!

What’s wrong with her?

Three times in one day I was asked, “What is her diagnosis?” I despise that question. And, I normally don’t handle it in the way I want.

Sometimes I say, “Well, she has high tone.”

Or “She is hypertonic.”

Or “We don’t label her.”

Or “Her dad and I have decided that when Teal can talk about it herself, she can tell people her diagnosis, but we don’t feel like it is our right.”

You know what I really want to say to these “oh, you don’t mind me asking, do you…” people…SHUT THE F-UP…WHY DOES IT MATTER? And, who are you to have the nerve to ask? And, yes, I do mind you asking. And, mind your own Goddamn business. And a slew of other things I don’t feel comfortable writing here.

God…I hate it. And, the biggest thing I struggle with is that I’m not ashamed of her diagnosis. I just don’t think random people need to know. I literally had a woman who had seen Teal maybe 3 times say, “If you don’t mind me asking, what is her diagnosis?” What? Really? When I told her that we don’t label her and all of the above statements…she got mad. I type this and laugh. SHE was the one who got mad. The nerve. Seriously, she stormed out of the market in a total huff all pissed that I wouldn’t tell her what was wrong with Teal.

Because, that’s what people really want to ask. They are desperately curious to know why she isn’t “normal.” What’s wrong? They are uncomfortable because they want to put her in a box and label her so they can feel better. So, they can take a deep breath and know it’s not contagious, it’s not catching. This is the truth. People don’t like to see something that is different from them.

Now, I know I am stereotyping. I know. Not every person feels this way…but as a mama lion…I will claw the eyes out of those people who do fall into that category. And, I’m shocked at how many more people fall into this category than I would ever expect. Sure, people say they want to know so they can treat her better or so they can better understand her. Bologna. They want to feed their own curiosity. And, it pisses me off.

I came home that day all in a fluster. I was desperate to find a way to answer that question without being a crazy mama lion while still standing up for my daughter and the respect we have for her. My husband, a friend, and I came up with this…

“How will the answer change how you interact with my daughter?”

I’ve tried it out in my mind and it still sounds bitchy. And we thought about…

“Why does it matter?”

I am still struggling months later. I still don’t know how to answer it. If you have an answer and are willing to share, please comment or send me an email at Jen@ForOurSpecialKids.com. I’d love to know how you handle this question.

And, please know…it’s not that we’re ashamed of her diagnosis…it just doesn’t matter. She is amazing, incredible, and so much more than a diagnosis!

Jen

Hope

On my podcast, For Our Special Kids, at the end of each episode, I used to ask the question, “What is one word that you would use to describe a child with special needs?”

The word “hope” never came up. Looking back, I am actually shocked it didn’t but I’m also not shocked. Ha Because hope is absolutely NOT the word I would have used when I received Teal’s diagnosis. Sitting across from a calloused, been-in-the-industry-too-long, neurologist who had no bedside manner and should never have been delivering diagnoses to parents … I couldn’t have felt further from hope. Despair maybe. Confused, yes. Shocked, absolutely. And WITHOUT ANY hope, yes. Certainly not hope or hopeful.

But, that was over 5 years ago. So much can change in 5 years. Heck, so much can change in 5 months or 5 days. 5 minutes.

So, why would i use the word hope to describe a child with special needs? Aren’t they the farthest thing from hope? Don’t they struggle with everyday things like eating, dressing, walking, talking…almost everything? Most children with special needs, not all, struggle with something quite large each day. For my Teal, she’s struggling to express her needs and emotions with words. Oh, and eating too. And, selfcare. Ha…Teal struggles with lots. And, yet, I would absolutely use the word hope for my magical little girl.

Desmond Tutu once said, “Hope is being able to see that there is light despite all of the darkness.”

This is the hope for which I am referring and I imagine the others were as well. It is the light in the dark. A cool breeze drifting on a hot night. The rainbow appearing after the storm. The soft touch of your child’s hand. The caress of a lover after tears of sorrow.

It can be one brief moment in time that shifts all your perspectives. Hope is fleeting at times for us as parents and caregivers.

However, what if you look at your child with hope and you see hope within them? How does your perspective change? My daughter is the light in the darkness. She is the cool breeze, the rainbow, and the soft touch. She is the hope we need to see in this world.

Our children are the light. Our children are the hope. They are the ones who show us the way through the darkness. They are the ones taking our hand and guiding us on this journey. They are here to teach us to see a new perspective. They are here to help us evolve into better humans and to see our life on Earth with a new lens.

We must begin to look through their eyes. And, when you do, you won’t see so much darkness in this world, in your life, in your days, in your moments…or in theirs. You will see the light.

What happens when you fall off the wagon?

Do we need to feel guilt towards our spirit team when we fall off the spiritual wagon?

I’ve fallen off the wagon. Yes, I’ve said it. I fell off the wagon and it drove away.

I’m also happy to say I found the wagon and I climbed back on.

We’ve all done it and we’ll do it again. We fall off the wagon with our eating plans (aka diet), our movement plans (aka exercise routine), our friendships, our hobbies, our…everything. This time I fell off my meditation and journaling plan. I normally wake up early and meditate for 15-20 minutes followed by 10 minutes or so of journaling. The journaling often turns into automatic writing and it is powerful. My early morning time is extremely meaningful to me. I am a better human, a better mom, a better wife/daughter/friend… a better everything when I make my meditation/journaling time a priority.

So, the question is … WHY DID I FALL OFF THE WAGON IF IT’S THAT IMPORTANT? What was so important that it took priority over my “me” time?

A couple of things…I got sick. Ugh. Like really really sick. Sinus infection, ear infection, blown ear drum sort of sick. And we had a holiday in there and guests in town for 3 straight weeks. Yes, all great excuses. But, nothing says I can’t just sit in silence for 5 minutes each morning before I start my day. No matter how horrible I feel. It doesn’t have to be the normal 40 minutes. 5 minutes is okay.

Well, anyhoots, I got back on the meditation/journaling wagon yesterday. YEAH. And, as I sat in meditation I started apologizing to my spirit team. I thanked them for being patient with me but then I started profusely apologizing. And, do you know what I heard…”This guilt is placed by yourself. This is your guilt. This has nothing to do with us.”

How many times do we place the emotion of guilt on ourselves?

Many times I find myself avoiding something because I avoided it in the past. And it is easier to avoid that it is to do. And, it is sometimes easier to feel guilt than it is to do. Get that…let it sink in. Sometimes I choose to feel guilty about not doing something than actually doing something. Exercise is a great example for me. The longer I go without exercising, that easier it is to not exercise. And yet, each day I don’t exercise, I feel more guilt. Agh! It’s crazy. Why would I ever do that? I don’t want to feel guilty. Yuck.

There are about 10 things right now that I know I am avoiding. I am choosing to NOT do something and in effect, I am choosing to feel crappy about it. Why on Earth would I choose a heaviness in my heart, a pit in my stomach, and an overall sadness and disappointment over doing something? I have no idea. Truly…I don’t.

So, how did all of this come to be…a little message from my spirit team about guilt!!

Ha!

And, so, I’m going to actively choose to DO. I’m going to actively choose to do and to NOT avoid. So, yes, that means putting the folded clothes away in my bedroom. Yes, that means going through my closet and donating the clothes that I will never wear again. Yes, that means moving more today than I did yesterday. Yes, that means doing! And in the act of doing, I feel the heaviness get lighter, the stomach ache ease, and the sadness lift.

What can you start to do today?

With love,

Jen

PS: if you’ve fallen off the meditation/journaling wagon…don’t feel guilt, just do it right now. Sit for 5 breathes and then write 1 sentence. It’s that easy!