The Power of Friendship

" A friend loves at all times." Proverbs 17:17

Years ago, when I was battling infertility, my doctor sent me to have a $2,000 full blood workup at a local lab. I was living in Indianapolis at the time.

Within a week, my doctor called me with the news. The results came back to show that everything was fine, except for one small thing… a single gene mutation of a blood clotting disorder known as MTHFR. 

(If you find the acronym somewhat humorous, you’re not alone.)

MTHFR can lead to several scary, and even deadly problems concerning pregnancies. But in my case of only having a single gene mutation, I was given a simple antidote...
I only have to take one baby aspirin per day to keep my blood from clotting.

That’s it.
No medical surgeries.
No incurable situations.
A simple treatment.

Instead of being relieved that there were no major problems the overly expensive blood work indicated, I started freaking out inside my head. Sheer panic seeped in. As soon as I hung up the phone, I fell to the floor. Horrible flashbacks of me holding my beautiful deceased daughter, Hadassah, crept into my mind.

Hadassah was my first born child. Her death forever changed me.

You see, two years before Jacob was born, I had carried a beautiful little girl full term. She was my first child, and I couldn’t have been more thrilled. I had always wanted a little dark-headed girl, and finally had my wish. She was my dream come true in every way. Two days before my 37-Weeks-Along date, I was at a routine doctor visit when she stopped moving. The doctors couldn’t detect a heartbeat, and announced that she had passed away.

They induced me, and I delivered her that night. It was the most horrific feeling in the world, and one that still haunts me to this day. To try to figure out what had gone wrong, the doctors did blood work on her. They didn’t find a single thing wrong with her. She was absolutely perfect, with the exception of a small observation…

At one point in the umbilical cord, there was a “thinning” of sorts.
NOT A KNOT.
NOT a cord accident.
But the umbilical cord was just a tad bit thinner on one small section.

The doctors don’t think that caused it. But, when you’re a mom looking for answers, and feeling that you need a “why”, you’ll obsessively cling to every little detail you can gather, and ponder it for years to come.

*******

Now, flash forward to me, hunched​ over on the cold floor of my Indianapolis apartment, in a puddle of salty tears and snot, convulsively gasping for breath.  I had to get out of the apartment. But, where to go?

I grabbed my keys, jumped in my car, and fled down the road.
I knew that in my mental state of panic and heartache, I shouldn’t have been driving. But I didn’t care. 

I made it five miles down the road, turned into a friend’s driveway, and ran up to her house.  She was juggling her (at the time) four young kids. Opening the door in merriment, she greeted me, only to find a red-faced, sobbing mess. Before she could even ask what was wrong, I blurted the words, “I killed my daughter!”

"I killed my daughter!" I blurted.

Before I could say anything else, she magically had tea brewing on the stove, water in front of me, her kids playing out back, and a tissue box in front of my face.

I repeated, “It’s all my fault my daughter is dead! It’s my blood clots!” I bawled.

Hadassah was everything I had wanted.

I proceeded to tell my friend my theory of Hadassah's death – that me having MTHFR causes blood clots, and that a blood clot must have somehow cut off my daughter’s lifeline from me where the umbilical cord thinned. I went on and on, as though it were truth.

Instead of telling me that I was crazy and overreacting, or that I needed to just “get over it and move on already”, (Yes, I actually had someone say that to me.), my friend just embraced me and didn’t let go. She reminded me that God loved me, and that I did NOT contribute to my daughter's death, that it was in NO WAY my fault Hadassah passed away. 

My friend complimented my parenting, telling me that I was a textbook go-by-the-book mom who gave Hadassah a perfect life while she was alive inside me. She encouraged me, and reassured me again and again for what seemed like hours.

She let me cry. 💜
She let me talk. 💛

She hugged me and listened. 💙

She validated me.💚
In that moment, she did everything perfectly.💗

She neither scolded me for popping in as an unannounced mess, nor downplayed my grief, nor gossiped about me later. 

She was (and still is) an amazing friend. 

While I still think that MTHFR has something to do with Hadassah’s death (even though it cannot be proven), I no longer blame myself. But looking back on that critical, defining moment in my life, I realize how blessed I am to be in fellowship with the ladies I love. I relish in the friendships I have with them.

I’m very picky about who I let into my life and my “inner circle”. I don’t have room for judgmental advice or negative comparison parenting. In friendship, I value authenticity, acceptance, and love. 

I reflect on the people that I enjoy ‘doing life with’ and smile. When I think of them, I breathe in the goodness of what God has blessed me with – true friendship. Through all my journeys, no matter where life has taken me, I will forever be thankful for the incredible women that I can call “friend”.

5 Truths About Sensory Disorders

 Three years ago, as I was browsing Pinterest, I came across the following image. I told Jason that it described our son, Jacob, to a tee.  However, it wouldn’t be until three years later that he was flagged by a school occupational therapist as having a sensory disorder.

Photo courtesy of Google Images and found on Pinterest

Not only does Jacob have a sensory disorder, but so does our 3-year-old, Jude. 

Jude – Sensory Processing Dysfunction
Jacob – Sensory Modulation Disorder

Jude’s was much easier to identify than Jacob’s. Every since Jude could grab, he played nonstop with people’s fingernails, trying to bend them back. He sticks everything in his mouth even when he’s not teething. And, he gets overstimulated easily. These were all signs of a Sensory Processing Disorder.

The other day, I had a conversation with someone, trying to explain what it means to have sensory problems. It was tougher to explain than I thought it would be. So, here are 5 truths that as a mom, I think everyone should know about sensory disorders.

Truth #1 – You can be both a Sensory Seeker and Sensory Avoider at the same time. 

Jude is trying to get the sensory
input he needs by drinking
the pool water with his hands.
As a mom, I've learned to look
for these signs so I can implement
a Sensory Brain Break.

Yes, this sounded weird to me too. But this is the case with my both boys when they were tested by an occupational therapist (OT).  How can they be both? Well, it all depends on the situation and what the sensory triggers are in that given situation. In Jude’s case, he may need the sensory input of chewing on a teething necklace (seeking sensory) at the same time as needing personal space and not wanting to be touched (sensory avoiding).

Truth #2 – Sensory meltdowns can happen at any time, any place. 

My boys tend to get overstimulated at times. When this happens, they have what resembles to be BIG temper tantrums. The sad truth is that they cannot just “snap out of it” or “get a grip”. During these meltdowns, the brain has a mind of its own. (No pun intended.) 

The last sensory meltdown Jacob (age 7) had was on the first night of Vacation Bible School at our church. The transitions, crowds, and loud noises were enough to set him off. His meltdown was awful. He cried one moment and got angry the next. He could not be consoled and even started acting out because he didn’t know how to “fix” what was happening to his brain during that meltdown. Days later, he even had an open discussion about it, felt remorse for his behavior, and articulated the problem. I’m blessed by the fact that Jacob has a large vocabulary and is able to express his feelings well when he reflects on his actions. However, that is not the case with Jude.

The last time Jude (age 3) had a sensory meltdown was yesterday at Meijer. I was ordering food at the hot meals counter, and Jude started screaming and covered his ears. In that moment, there was nothing I could do for him except to reassure him he would be ok and to remove him from that situation as quickly as I could. I could tell he was sensing sensory input because he tried to chew on anything he could grab – the cart handle, items nearby on a shelf, and his brother’s fingers. I had left his chewy at home. 

Jude's chewy necklace helps with sensory input.

Water play is one way my kids get
the sensory input that they need.

Truth #3 – Sensory “Brain Breaks” aren't only a great idea, but they’re much needed! 

Both boys’ OT recommend that we create moments when we incorporate different sensory input activities. For Jacob, we are creating a sensory bag with items that he can use anytime he feels that he needs the sensory input. Items include something for each of the five senses - from fabric swatches (touch), to peppermints (taste), to a Walkman (hear). (You get the idea.) For Jude, I’ve started finding time within the day to incorporate sensory play with him – Play-Doh, water play, and swinging on his playground. These brain breaks help lessen meltdowns and outbursts throughout the day.

Truth #4 – Sensory disorders affect EVERYTHING in
day-to-day life. 

Food choices are based on texture. Clothes are chosen because of fabrics. Transitions at home, school, and in public are difficult. And don’t even get me started on the noises, crowds, personal space issues, and over-stimulation in an environment. All these things have to be taken into consideration when raising sensory-sensitive children. I used to think that Jacob was just being defiant when he wouldn’t eat most foods I served, or didn’t like the clothes I bought him. Now I know better. I wasn’t making choices based on his sensory needs.

Truth #5 – Parents and children need to be supported and not criticized. 

This is a huge truth for me because it hits home on the frequent basis. I don’t know how many times I’ve had people  (some I know; others are complete strangers) approach me after seeing the boys’ meltdowns and say things like: 

“My kids never acted like that. They always minded me.”
“Your kids need to see a belt. That’ll teach them to act out in public.”
“Someone needs a nap, or a spanking, or both.”
“You let your kids walk all over you.”

I didn’t need these comments at the time, and I don’t need them now. I know they come from a good place, where people are concerned. After all, it’s easy to fall into the mindset of “I’m a parent expert because I've raised kids”. However, what I have realized over time is that raising kids doesn’t make anyone a parenting expert when it comes to other people’s kids. I’ve learned to have more patience with my own children (even though I fall WAY short and am a hot mess most days) and that no matter what I’m witnessing in public, I don’t know what those families are going through behind closed doors. The last thing a struggling mom needs to hear from me is how I am a "better parent" than she is and how I seem to have all the answers.

Speaking from experience, it’s humiliating at times to be THAT mom that seems to have THOSE kids. It’s physically and psychologically draining as a parent. But, I’m slowly learning to hold my head high and persevere through it. As my boys grow, they’re going to continue to learn coping strategies that will help them get through their sensory meltdowns. They've come a long way, and will continue to grow. 

I firmly believe God put us all on this Earth to support one another and to encourage each another. I hope that I can continue to be an encouragement to other parents that I encounter in daily life, and in the classroom setting. 

Here’s a website I found that explains sensory problems in layman’s terms. I want to note that this is not an advertisement, nor am I being paid to post this link. This is just for those of you who wish to learn more about sensory disorders, because believe it or not, it affects more kids than we all realize.
http://sensationalkidsot.com.au/home/sensory-processing/
Recognizing the signs of sensory meltdowns has made a huge difference in how I connect with people. And that's a good thing. 😄

Faced with the Unknown

My three-year-old has idiopathic epilepsy. 

idiopathic = the cause is unknown 

I heard from Jude's neurologist today. He does NOT have the rare, but treatable form of epilepsy known as ESES. 

Tape and a stocking cap hold the electrodes in place.

This is what the back of the EEG
head wrap looks like.

ESES - Electrical status epilepticus in sleep

Basically, a child (like Jude) is monitored overnight in the hospital using an EEG test. In layman's terms, doctors and nurses use a sticky paste to connect tiny wires and electrodes (suction sensor looking things) to different parts of the patient's scalp and forehead. The electrodes measure brain waves and activity as the patient sleeps.

Jude has done this twice. This 'go-around' went better than the first, but it's still not fun. This time, the neurologist just wanted to make sure he didn't have ESES. Even though my gut told me he didn't, I believe in letting doctors do their God-given abilities to help find answers. 

Jude has a severe language impairment. I've known it for a while, and as time goes on, it's becoming more and more frustrating on everyone's parts. Jacob is frustrated because he can't understand his brother's "jargon" when they play together. My husband and I are frustrated because more often than not, we're not sure how to meet Jude's needs when he's trying to communicate and we spend the next 20 minutes playing guessing games, which leads to over-stimulation and inconsolable meltdowns.  

Could you imagine what it must be like for Jude? He tries his darndest to express himself when he's hurt, sick, or wanting to share something about his day. But, no matter how hard he tries, no one can understand most of the things he communicates.

So today, when I started sharing his test results, people have started asking me how I feel about them. Well, it's hard to say because there isn't a right answer. 

I mean, I guess on one hand, I should be thankful he doesn't have ESES. But on the other hand, it means that he's still a medical mystery. 

Doctors don't know where 10-15 minute seizures have come from. They don't know why he doesn't sleep well. They don't know why he cannot communicate as properly as he should for a child who has had 82 sessions of speech therapies from professionals, all by the age of 3 years, 12 days old. Doctors don’t know if Jude’s behavioral challenges stem from medicine side-effects, his communication disorder, or both.

There are no answers. 

None. Nada. Zip. Zero. Zilch. The Big Goose Egg.

I just wanted answers. 

I hate the unknown. When you must make tough decisions that affect a tiny little human's life and health, the unknown sucks. 

So, I guess that is how I’m feeling about the results of the ESES test...

Coming up this month, we move on to testing for sleep disorders to see whether it’s the epilepsy or something else playing a part as to why Jude rarely sleeps more than 5 hours at a time. Prayers, as always, are appreciated. And in the meantime, if you see me in person, a simple hug or smile is the perfect antidote to my weary heart.

Minimalist Wanna-Be

My family and I recently visited the Amish countryside of Ohio. The Amish's simplistic lifestyle has always intrigued me. I know that I don't exactly know what's going on behind closed doors, but from the outside perspective, they seem like content, happy people. That trip only confirmed my desire to approach life with a minimalism attitude. 

I admire the simplistic ways of the Amish community.

I once heard that in order to be a true minimalist, you must live with less than 100 things. As a working mom with two kids, this made me laugh. I'm not laughing at the minimalists who choose to live this way. I'm laughing because it seems unrealistic to me in the Season of Life I find myself living. 

Even though I weed them out periodically, toys are everywhere - riding toys, Touch-and-Feel books for my Sensory Disorder toddler, toys that assist with fine motor skills, Legos, science kits for the 7-year-old, etc. You get the picture. 

That doesn't even count my husband's piles of... well, I'm not exactly sure what they are. Or my teacher resource stuff. 🙈 I have bins of things I've collected over the years that I use on a constant basis in my classroom. Looking around my house, I have to face the music. I cannot live on less than 100 things right now. 

But, then I realize that I don't necessarily have to. I can still embrace a minimalism mindset without feeling the need to move to a 12' x 12' Tiny House and fish for supper every night. (My husband's dream, by the way.) And I certainly don't have to throw out all the toys that help my children as they grow through different stages of life and become interested in different things.

So then, what does a working-outside-the-house, career-loving, family-oriented minimalist mom look like? 

My entire wardrobe for all seasons.

Well, I think it can look like different things, based on the family's needs and the mom's job.
Let me explain what I mean. Here's my closet. Other than my T-shirts (which only take one drawer of my dresser), socks, and unmentionables, this is literally all the clothes I own. 

It's a simple step-in closet, not a walk-in.
The left side houses my husband's clothes.

 One way that I maintain this space is by sticking to a few rules-of-thumb:
1. If I can only wear it in one season (other than a winter coat), it's out. 
2. If I can mix and match it with other pieces, or layer it, it stays.
3. No matter how trendy it is, if it's not practical for my needs, it's out.
4. When I get a new piece of clothing to hang, there has to already be a free hanger in the closet for it. If there's not, I make a choice to get rid of an older piece of clothing to make space for the new piece. So, I'm not adding to my closet without taking anything away from it.
Maintaining this lifestyle has been freeing. I don't spend large amounts of time stressing about my outfits; I make the most of what I have. And my husband still thinks I look good, no matter. 😉

I save money in the long term too, by not purchasing clothes that I'll barely wear. My rules-of-thumb force me to become a wiser consumer.

Now, I know this isn't for everyone. I have wonderful friends who are required to have larger wardrobes for their jobs (i.e. - television personalities, sales reps, the like...). But for this simplistic teacher, it's a perfect way for me to embrace a lifestyle I admire, all while keeping my family going and looking professional doing it.

Now, if I could just figure out a better toy system...😏