Mommy Mondays

I would lace up the pink satin ribbons on my shoes, stand on the points of my toes, and gliding through the room, I could find happiness to the rhythm of a familiar tune.  In the midst of a chaotic life, I found order and grace. I wasn’t the very best dancer, but from the age of two years old through college, the dancing bar and stage were consistent fixtures in my life. Dancing was part of life, it was an outlet, and I loved it.

So, I bought the cute little ballerina bag with the toe shoes painted on the side of it, the tights, the leotard, and the shoes. I dressed my precious daughter in her dance clothes and fix her hair in a perfect ballerina bun. I couldn’t wait to share dance with her. I just knew she would fall in love. I pictured this being her “thing” with dance recitals and costumes for the next fifteen years at least.

She was good….really good. I was so proud of my precious ballerina. However, I began to notice that she grumbled a little each time we pulled up for practice. Her enthusiasm dwindled quickly. She didn’t like the itchy tights, the tight leotards, and much preferred to make up her own dance moves to her own music.  I recall a conversation where I said “Grace, you cannot quit, you made a commitment and we have to honor our commitments” to which she replied “But Momma, I don’t even know how to say that word!”

We finished out our dance year with a wonderful recital. Despite her excitement for the costumes and show, she sweetly declared “I do not think dancing is for me.” Fair enough. We had tried. We kissed dancing goodbye.

So, what next? We went through the list. Would you like to take piano lessons? Guitar lessons? What about a sport? Soccer? T-ball?

“Momma, if it’s ok, I think I would just like to be an ordinary kid. Can I come home from school and just be me?”

“Umm, yes, yes I think that would be just fine.”    …Ouch!

You see, I was trying to find something that would be just for Grace.  Our home is a revolving door of therapists and help for our son. Much time and attention is devoted to his care.  As the parent of a special needs child, it is a struggle to balance equal time and attention between a child that requires “more” and a “neurotypical” child. I wanted to make sure that Grace had an opportunity to have fun and to have a special time of her own.

I had to check myself. First, I never want to mistake activity for quality time. Second, I never want to allow myself to be pushed into the world’s mold of constant motion.  Although extracurricular activities can present wonderful opportunities for kids, there is no “parent code” that declares you a bad parent if your child does not participate in a bazillion (or even one) extracurricular activities. My sweet daughter had reminded me of the value of slowing down and to “just be.”

I did however, want to make sure that I reserved some time aside just for Grace. My solution: Mommy Mondays!  In place of a “thing”, class, or skill, I have made Grace my “thing” every Monday afternoon. It’s nothing spectacular, but its special time set aside for just the two of us to share some ice cream, talk about the day, or play together uninterrupted. I have tried to be intentional during this time about reaffirming to her who she is in Christ. This time has become so special and I am so thankful Grace chose to “just be” this school year.

I want both of my children to feel celebrated for exactly who God created them to be. Too many times parents place their child’s future within the confines of worldly expectations, based on parental interests (I was a football superstar and you will be too. Or I loved dance and so you should too), and influenced by social advancement.

I have struggled from time to time in “letting go” of my son’s future. Because he has Autism, I have no idea what the future holds for him. I have had to look reality head on with the understanding that he may live with us forever, he may or may not hold a job, he may or may not ever get married or even be able to speak in complete sentences. I pray for a breakthrough. I pray for the bondage of Autism to be broken.  At the same time, I celebrate who he is, just the way he is. I cannot make comparisons but rather embrace his precious personality and rejoice in even the smallest of his accomplishments. Having a special needs child has allowed me to understand the importance of celebrating a child’s individuality.

Who knows what Grace may choose to become, how her interests may change over time, or what she will want to do with her time in years to come. For now, my sweet girl wants to “just be” with her mommy. I am thankful. We will celebrate this season.

Grace may never grace the stage with pink point shoes and a sparkling tutu, and that’s just fine. But we will dance together through this journey called life. We will celebrate every accomplishment, find joy in the good, pray through the tough, and “just be” so as not to get lost in the every-day-hustle of life’s demands.

"Is It Ok To Ask God To Heal My Brother?"

Our morning began just like every other morning. There was not enough coffee drank, mismatched socks, lunch kits hurriedly packed, hugs and kisses, and the Frozen soundtrack belted out at the top of our lungs as we drove to school this Wednesday morning.

The pause between two songs brought an opportunity for my six year old daughter, Grace, to speak up. “Hey Momma,” she said almost questioningly (I turned off the music). “I want to ask you something but I don’t know if it’s ok to ask. It’s about Ezra.”  

Ezra is my precious four year old son, who has autism. All at once a rush of thoughts overwhelmed my heart. Grace knows she can always ask anything. I want to make sure she knows that she can especially always ask us about her brother. She needs to ask questions. Questions are good….I wondered what she was going to say.

“Grace, you can always ask us anything, especially about Ezra.” There was a long pause for thought as my daughter collected herself and breathed a heavy sigh.

“Is it ok to ask God to heal my ‘Ezra Brother’?” She continued, “Cause I’m beginning to think that he has a disease. I don’t think he understands us and I don’t always understand him, but I want to and I want him to too.”

Such heavy thoughts for such a little girl. My heart instantly began to ache. She had obviously wrestled with this question for some time. Her words streamed from her lips as though they had been stored up under pressure and now there was no holding back.

“Yes, you can ask God to heal Ezra. You can ask Him because He can do it. He is able to heal Ezra. But Grace, God may choose not to heal him and that’s ok too. We trust God. Grace, I want you to know that God does not ever make mistakes. I believe God knew that you would be the perfect big sister for Ezra. You have such a huge heart, you are so loving, and you help take such good care of ‘Ezra Brother’. You and Ezra are both perfect just the way God made you. We will love Ezra no matter what.”

 “Yes, I will love him no matter what too! But I just had to make sure that it’s ok to ask God for that,” she said very matter-of-factly.

“God wants you to come to Him with your questions, Grace. It’s ok to ask. I do think we should be careful how we talk about it in front of Ezra though. He does understand us sometimes; probably more than we realize. I don’t want Ezra to ever think that he isn't wonderful exactly the way he is.” We were pulling up to the school building.

“Yep! I agree! Dear God, please heal my ‘Ezra Brother’ and make him all better. I want him to understand me and I want to understand him too. I don’t like to see him struggle. I want him to know I love him. Amen.”  She seemed completely satisfied and relieved, like a heavy load had been lifted from her. She gathered up her things, gave me a kiss, and hopped out of the car as though we had been just chatting about ice cream.

I watched my happy-go-lucky girl bounce down the breezeway and into the school building…and then I let it go. I sobbed the deep sobs of a broken momma’s heart.  I sobbed the kind of sobs that leave one feeling depleted of any kind of energy. My heart was heavy for my daughter, for my son, and for this thing called Autism. Did I say everything that should have been said? There is no manual for these types of questions and I am certainly no expert in such matters. Such heavy thoughts for such a little girl.

Friends, let me tell you something. When sadness tries to grip our hearts, we have two choices. We can either allow sorrow to overwhelm our souls, or we can fight for faith from our Heavenly Father.

I knew what I needed. I needed Jesus. I needed Jesus and a Pumpkin Spice Latte (just being honest people).  So, I sat sipping my latte and had a good long visit with my Jesus.

Instant peace. The Lord so graciously brought to my attention all of the beauties from my seemingly overwhelming morning.

Faith. My daughter had demonstrated mature faith this morning. She wasn't asking me if God could heal her “Ezra Brother”, she just wanted to make sure it was ok to ask.  What a great reminder for me as well. I know that God is able, but sometimes I just forget to ask.

Hope. My daughter’s hope was not crushed. Do you know why? Because we serve the God of the universe who truly Is Able to heal. I didn't have to lie or offer up some cliché to cover up hopelessness. I was able to share truth with her. The truth is that God is all powerful, all mighty, healer, and He is in control. The truth is that He wants us to bring our hurts, requests, joys, and sorrows to Him because he loves us. The truth is that God’s plan is perfect. The truth is God does not make mistakes. I can boldly share hope with my daughter about her “Ezra Brother” because my God is good.

Love. The love that my daughter has for her special needs brother runs deep. It runs deeper than words, deeper than actions, and deeper than any diagnosis. She pursues Ezra will her love. She loves him enough to bring his name to the feet of Jesus and to ask for healing. She loves Ezra no matter what.

After finishing every last drop of my latte, removing the black smudges of mascara from my face, and trying to make myself look human again, I went about my day. As I thought more and more about our Wednesday morning conversation I became more and more thankful for it. I pray that seeds of faith were planted deep in Grace’s heart. I praise God for such precious children. I praise God that because of who He is, I can speak truth. I am thankful.

It was "Western Day" at school last week. Ezra was not too sure about his pearl snap shirt, boots, or the camera! Grace tried to cheer him up!

It was "Western Day" at school last week. Ezra was not too sure about his pearl snap shirt, boots, or the camera! Grace tried to cheer him up!

The Window


There he sat starring out our living room window. He sat there for at least thirty minutes. Some of the time he was silent and some of the time he chattered away in his own little language. I wondered what he saw. I wondered what it was that had so captivated his attention.

It’s interesting isn't it?  It’s interesting how two people (regardless of ability or disability), can look out of the same window, and yet they see such different things.  

I love to keep my windows open. The first thing I notice when I look out my window is the sky. I love how the heavens declare the glory of the mighty God that I serve with their inaudible praise. Then, I might notice how the sunlight perfectly shines on each drop of dew on the grass. I notice the motion of the wind and I notice how the leaves have been swept across the drive from the night before. I take all this in and it refreshes my soul.

And so I wondered, on this day that my precious son sat beside the window, what is it that he sees? Because he cannot tell me, I speculate…Does he take it all in as one beautiful picture? Or does he look at each tiny detail? Every blade of grass? Every cloud in the sky? Does it bring joy to his soul as it does to mine, to marvel at the beauty of God’s creation each day? Or does it overwhelm him to take in so much? What does he see?

In many ways, this is what life is like when you have a child with Autism. You are both looking out the same window, and yet you are both seeing such different things. Ezra and I live in the same world, but the way we experience it is so very different.

As much as I want Ezra to see what I see, experience what I experience, feel how I feel, learn the way I learn, and love the way I love, it is not always that easy. What’s even more, who says that there is one “right” way to experience life? I have learned far more, grown far more as a person, and have developed a deeper level of compassion and love by trying my hardest to learn about Ezra’s world instead of demanding he conform to mine.

Certainly there is an importance for him to learn from an educational and behavioral standpoint. I am so very thankful for the group of amazing teachers and therapists that have rallied around our sweet boy to help him achieve his very best. But as he learns from us, we must never forget that there is so much for all of us to learn from him. He has a beautiful mind that is constantly at work. What a tragedy it would be for us to take for granted the blessing of a precious child because he does not fit into the cookie cutter of what society deems as “normal” or “acceptable”.

I want to become a student of my children. I want to see what they see when they look out the “windows of life”.

About a week after my little boy had sat so fascinated at the living room window, my little girl sat with her play computer at the very same windowsill and was “working” hard. I asked what she was working so hard on and she replied “I’m working on my blog”. (I have no idea where she got that from)

As she sat and banged away on the keyboard of her little toy computer, she began to “read to me” the blog she was working so hard to write…

“My brother has Autism. I don’t know why God let him have Autism. But that’s ok. I guess He let him have Autism so that I could help him and love him. Sometimes my “Ezra Brother” struggles, but I am here to help. The end.”

Grace lives in the same world as you and I. Grace sees the world differently than most six year olds do. Why? Because our family has embarked on a beautiful, but sometimes very hard, life-long journey of Autism. Grace’s experiences as the older sibling of a baby brother with Autism has caused her to think about things, pray about things, and see things differently than many children her age.

Sometimes, it’s good to try to “see” what others see when they look out the windows of life. We can all learn so very much from each other.  Our faith, our life experiences, our victories, and our defeats all contribute to how we each “see” life.  We would be wise to become students of one another. We would be wise to celebrate the beauty of a mind that “sees” differently.

Rapunzel and Pascal: Understanding Special Needs Siblings

 “Hey Mom, Ezra and I go to the same school! But Ezra rides on a little bus and you drop me off in the car. Did you know that I only have one teacher, but Ezra has a bunch of teachers? And did you know that I walk at school and Ezra rides in a red buggy? It’s like we’re the same, but different!  …Can I dress as Rapunzel for Fall Fest and can Ezra be Pascal? Cause He’s my lil buddy…”

This was the mostly one sided conversation I had this week while riding in the car with my five year old little girl, Grace, in regards to her brother. I kissed my sweet girl on the forehead as I pulled up to the school to let her out and watched as she bounced her way into the building. As I drove off, her words continued to play in my mind. Although said in complete innocence, my little girl’s words were very telling of how she is beginning to understand the differences between her and her little brother.

“It’s like we’re the same, but different!”  … Wow, very well said! Grace is very slowly beginning to understand more and more about her brother and this thing called Autism.

This has been an interesting process to watch. I know for myself, and for my husband, we are still figuring out life on the Autism journey. There have been feelings of grief and loneliness as well as feelings of great joy and thankfulness. So, can you possibly image how a young sibling would process the fact that their brother/sister has Autism?

A few weeks ago, I wrote a blog titled Talk About Us Behind Our Back. The idea behind the blog post was to encourage parents to explain to their children about special needs kids so that they might better understand how to treat them, react to them, and be their friend. I never dreamed that I would receive the response that I did. Remember, I asked you to talk behind our backs…but what I got were many emails, text messages, phone calls, and conversations. Most parents had the same question: What should I tell my kid about Autism? Or How should I go about explaining to my child about Ezra and kids like him?

Well, I’m no counselor and I am certainly no Autism expert. I am just a mom! But I would be happy to share with you what we have told Grace about her baby brother, Ezra.

Grace knows that her brother “struggles” sometimes. Grace knows that sometimes he acts differently, spits, has odd head movements, and very little language. These are all things that Grace has observed about Ezra. We have simply explained to her that -Yes, Ezra does act differently and he does struggle sometimes. We have also explained that it’s ok to be different and that God makes everyone very special and that He has a plan and a purpose for everyone no matter what. Yes, we have occasionally dropped the word “Autism” to Grace but you see, Autism is not who Ezra is, so we don’t really focus on this term with Grace as of yet. As Grace gets older, I expect for there to be harder questions and harder answers. From Grace’s astute observations in the car this past week, I can tell that she is putting the pieces together. She is gradually becoming aware of what it means to have a special needs sibling.

As Grace gets older, I watch her become more and more protective, understanding, and motherly in the way that she interacts with her brother. I often times have to remind her that she does not have to be the mommy or the therapist…just be the sister! I am thankful for the sweet heart that she has. She loves her “Ezra Brother” very much.

I ask the Lord often for wisdom and discernment when it comes to balancing a “neurotypical” child and a child with Autism. I want to explain things to Grace, but I do not want to overwhelm her. So, I concentrate most on helping Grace not to understand Autism, but to understand Ezra. I show her ways to connect with him, play with him, and love on him. I let her know that she is always welcome to ask questions. Questions are good. Questions breed knowledge, knowledge breeds understanding, and understanding dispels fear and brings forth relationship.

I will answer Grace’s questions as they come. In the meantime, I am interested in her innocent little observations. I am so thankful for the caring spirit she has with Ezra. I am thankful that she would even think to ask “Can I dress as Rapunzel for Fall Fest and can Ezra be Pascal? Cause He’s my lil buddy!” How cool is that?

Best Buddies waiting for Ezra's school bus!

Best Buddies waiting for Ezra's school bus!

All dressed up for Western Days at school last week! This was Ezra's first time to wear boots...he wasn't too sure about them!

All dressed up for Western Days at school last week! This was Ezra's first time to wear boots...he wasn't too sure about them!

My Little Helper

To me, Ezra is a very beautiful and unique name. Our Ezra was named after his Great Grandfather, William Ezra Crew Huggins. We really wanted to use a family name and we loved that “Ezra” also happens to be a biblical name.

It wasn’t until after we had chosen this name for our son that I looked up its meaning. In Hebrew, the name Ezra means “helper”.  Though I can’t quite remember my exact response to this information, I’m sure it was something like “Oh, how sweet! Mommy’s little helper!”

And then, on a very special, very snowy day in December, my “little helper” was born. He was perfect. Such a beautiful baby. Our hearts were full.

We came home from the hospital full of excitement and expectation. Our family was complete! We looked on with joy as our sweet daughter kissed her baby brother and named him from that day forward, her “Ezra Brother”. What a joyous time!

The next few weeks to follow, honestly all sort of blur together. My sweet “little helper” had a shrill scream that I had never heard a baby make before. I couldn’t calm him like I had been able to our daughter. He reacted to noises differently…or sometimes he wouldn’t react at all.

As months past, it became more and more apparent that something was wrong. We began to pursue testing. My sweet Ezra failed several hearing tests and although that was concerning, at least we thought we had an answer. So, then there were appointments, and there were more tests, and there were doctors that acted like I was a young, paranoid mom, and we would get brushed aside… Don’t get me wrong, there was still a lot of joy in our home and many hugs and snuggles, but it was now apparent that my “little helper” needed some help.

Our fight for answers took a while. We moved home to have the support of our family and close friends. We had to push our way through the medical “system” and fight to gain the attention Ezra needed. And honestly, by the time Ezra was given a firm diagnosis of “Autism”, it really was no surprise to us.

My precious “little helper” requires a lot of care. My “little helper” requires a lot of patience. My “little helper” requires a lot of compassion. My “little helper” requires a lot of help…and probably will for a very long time.

But oh, how thankful I am for my “little helper”! You may think that someone who requires so much care, patience, compassion, and help would not be much of a “helper” themselves, but you would be very wrong.

I have learned more about life, love, priorities, family, and patience in the last three years of Ezra’s life than I have ever learned before. He has helped me to see beyond what is considered “normal” and to see to the heart of an individual. He has taught me to look at every person with so much more value. He has taught me that there are some things worth raising a ruckus for and to speak up for those who cannot speak for themselves.  He has taught me to live “all in” each moment, to take joy in the little things, to cherish even the smallest of accomplishments. He has taught me how to love in a different language.

I could spend a very long time telling you all the ways that Ezra is my “little helper”.  I feel so very blessed to have the honor and privilege of being Ezra’s mommy.

Ezra: what a perfect name for my very special “little helper.”

Story time with my Ezra! Of course, it's Thomas the Train!

Story time with my Ezra! Of course, it's Thomas the Train!