So much has changed since last year and our post A Day in the Life of Micaela, A Special-Needs Toddler. It is definitely time for an update.
For those of you who haven't heard Micaela's story, let me catch you up to speed. Micaela was born premature at 27 weeks weighing 2lbs. She suffered a brain hemorrhage and also never fully developed her cerebellum. The end result was that she has less than 50% of normal brain mass. She has vision impairments, ataxic cerebral palsy, and a long journey ahead of her.
I like to tell people that my family and I have front-row seats to God's awesome power everyday of our lives as we watch this little girl overcome. She is amazing.
So, this is a typical day for our little family when we are at home and nothing unexpected occurs.
11:30am—The braces go back on and Micaela and I practice walking around the house. She is very proud of herself. Right now our goal is to be able to walk into the school independently this fall for preschool.
It is hard to imagine what Adela’s world is like. With a sibling who has so many special needs, she has to watch parents, family, friends, neighbors, etc give much attention and care to her sister while she is left in “normal” standing. Worse, when we have days involving ambulances and an airlift to a hospital, she is left entirely on the sideline, wondering what is happening to her world.
When I finally accepted respite care, it was nice to have the breathing room to give Adela complete and undivided attention. Doing things like taking her to the Dinosaur Museum and cuddling while watching a movie, have been so good for both of us. I love this little girl. She has an amazing sense of humor and a huge heart. It has been fun to let her know that. We have even incorporated little inside jokes and traditions, just me and her.
A couple weeks ago I noticed her displaying outward attention and attentiveness to other children and Micaela. Surprised, I watched her do things like make sure a couple of girls had straws for their drinks, making sure a friend was covered up by a blanket after a dip in the pool, and running to get Micaela’s glasses in the morning.
Excited by the sweet change, I told a friend.
My friend smiled and exclaimed, “Oh, her little cup runneth over!”
Like someone hit me over the head, I finally got it. We are all designed to give to and care for others from the overflow of love inside us. That is why it is so important we constantly go to our Heavenly Father and be filled with His peace, joy, wisdom, and love so that we can give to others from the overflow.
For months, I have been trying to mold Adela’s behavior and have felt like a potter working with jello. However, once her needs of love were met, it was natural and easy to treat others with respect and affection.
If you have a child who is struggling with their behavior, try using the love languages to fill their hearts with how important they are to you, and how much you care for them.
Words of Affirmation: Let your child know how special they are and how much you love doing things with them. Don’t be general, be specific. Tell them you love how they make animal noises or how well they did drying the dishes.
Quality Time: Do something with that child one-on-one. Watch a movie, read a book, do a craft. Or, involve family and friends and let your child decide what the activity will be. Make sure you avoid things that will draw your attention away from your child such as spending time on the phone or social media.
Gifts: It doesn’t have to be anything big, it is the thought that counts. An older child might enjoy a trinket you had personalized for them. A small child would be ecstatic with a treat. Make it a surprise, something you got for them just because you love them.
Physical Affection: Take the time to hug, cuddle, tickle, and rough house with your child. It is amazing how huge that physical connection is. A loving touch hold a great deal of power.
Acts of Service: Do something for them. Serve them dinner with extra flare. Help them finish a task that has been difficult for them.
Just as our Father in Heaven does for us, may we remember to fill our children with love and caring so that they can interact with others with an overflowing heart.
I am constantly so proud of the strong little girls that God blessed me with and pray that I always prioritize their precious hearts.
Was this article helpful? Is there something you would like to include for parent who might be struggling in this area?
I was excited about Adela’s birthday. It was the first year I let her sit down with me and talk about how she wanted to celebrate, what friends she wanted to be there, etc. I loved having the opportunity to show our girl how important she is to us and how loved she is.
However, the day, though immensely fun, left me feeling like I had spent the day getting ducks in a row instead of actively expressing love to Adela. My friends with children agreed. Birthday parties are exhausting and you don’t have many moments feeling connected to your little ones.
In fact, Adela spent nearly half of the event crankily clinging to me.
The next day we drove down to the dinosaur museum in Tucumcari, New Mexico with some friends who had visited us from Albuquerque. It was a low-key day. We let the girls set the pace and I admit to being thrilled when Adela drug me around, wanting to spend a lot of time alone looking at the exhibits with her mom. It was the most enjoyable day I’ve spent with my little girl in a very long time.
What surprised me the most was how much Adela is changing. Her ideas are maturing and her sense of humor has expanded. Afterwards, we returned home and Adela was quiet and content. I noticed for several days afterward that she was much more cooperative and attentive. She was less anxious and it was easier than ever to communicate with her.
I know that spending a day with her like that was very important. It let her know that I loved her. That birthday party had been fun, but I hadn’t truly paid attention to my little girl. I had been more concerned with the pizza arriving, the drinks staying cold, and if our guests were enjoying themselves. Adela still needed more to know she was loved.
We are all like this. That’s why date nights with our significant others are so crucial. That is why phone calls with parents and coffee with friends are irreplaceable. We need that connection and reminder that we are loved.
Is there someone in your life that you feel disconnected with? Can you think of a way to let them know you love them?
I love the book of Esther. The romance. The incredible position that allowed a woman to save her people. The love between uncle and niece.
I bet Esther did not always see the great purpose and position in life she had been given. Married to a powerful, and we can assume, selfish and egotistical king, she had responsibilities she never asked for and a husband who did not see her for extended periods of time.
Did Esther see herself as the Heroine of her own story?
We all get bogged down by the day-to-day grind of our reality. I certainly feel it. Often my biggest accomplishment of the day was that everyone went to bed fed and that the dishes got done. I easily begin to feel unimportant in the big scheme of life. I look at my world and feel far from an Esther who becomes a queen and saves her people.
And yet, we are part of God’s story. Saved, we become part of His plan, helpers in the unfolding of a beautiful destiny. We might have no idea how those pieces come together, but we can be assured that the result is always epic.
I considered this when reading Esther’s story the other day. Esther embraced her role in God’s plans. Though there were no doubt days when she felt frustrated or even depressed, she was one of God’s heroes of the Faith.
Today, I am choosing to be a heroine of the faith as well. This might mean that I must faithfully keep meals cooked and dishes washed. This might mean that I must be a faithful servant of God not ever fully understanding His purpose for me. However, there is a mighty strength in knowing that we daily set forth in God’s will, power, and love.
What a purpose! What a role! What a character!
For if you keep silent at this time, relief and deliverance will rise for the Jews from another place, but you and your father's house will perish. And who knows whether you have not come to the kingdom for such a time as this?”
Do you see yourself as a hero or heroine in God’s story?
Do you ever battle frustration, knowing that you are ready but having to wait on outside forces for your life to move forward?
A couple years ago my family and I moved into a new home. I remember spending days cleaning, more days unpacking. Anxiously, I awaited my favorite part: decorating. Just when I thought I was ready, everything else fell apart. Micaela had surgery on her eyes, Adela started to fight napping, Jovani’s work responsibilities increased. There were no extra resources for the grand adventure of recreating my new home.
And then, we moved again.
I laugh now. God didn’t short-change me at all. That final move into the community we now call home now was seriously the best thing that had happened to us in a very long time.
God’s timing is always perfect. Always.
Even then, it is hard to wait to move forward with our plans.
Have you ever stopped to consider Jesus? He was born perfect, enlightened, the Son of God. And yet, he waited thirty years to begin a ministry that lasted only three years. Those numbers are frustrating to prideful man, but they flawlessly completed the most epic love story of all time and transformed the world.
God makes no mistakes.
He will make none with you.
As a mother of small children with many needs, I am learning to trust God’s timing. My children do everything on their own timeline—walking, talking, learning to dress themselves. The more I push against the waiting, the more precious time I lose as their childhood slips away. Besides, they are too cute to miss out on these fun times.
God planted me here.
Every moment I let out my breath and remember to live in His timing, the more I am filled with joy.
There is a time for everything,
Remember a time in which you waited impatiently for something you desperately desired. What was precious about the timing in which that wish was fulfilled?
I love the 4th of July. The fireworks, the sweet faces of my children as they celebrate a day freedom.
This week, Vacation Bible School in my precious community began. I watch amazing women from miles and miles around come so they can minister to these little ones. My heart swells. I am so proud to be part of this Christian community.
God is so good to us. I can’t imagine living in a place where I am not free to share the message of salvation with others or having to live alongside people who have never acknowledged God’s love. I pray that tomorrow, while I enjoy food with family and celebrate a day of independence, I remember to keep other nations on my heart.
Happy Independence Day, friends.
My feet pounded on the uneven pavement. My side twinged. I concentrated on my breathing. Four steps breathing in. Four steps breathing out. Four steps in…
The road stretched out before me, my white truck a tiny dot on the horizon. I couldn’t think about my peanut butter-feeling legs or worry about that tiny bit of pain in my right calf muscle. I focused on my breath. Four steps in. Four steps out…
I continued to breathe.
My life is so much like a long run these days. If I focus on the pain or how far I need to go, the panic sets in and the exhaustion consumes me. But, if I only breathe, focusing on one simple task at a time, I am given the freedom to keep going.
It is no surprise that Jesus often warned against worry, urging us to keep our thoughts and minds focused on the day. Our loving God knows that the more we live in the moment the easier we will be able to trust in Him, enjoy our life, and become efficient as we use our hearts and minds to the fullest as we remain in the present.
A few weeks ago, when I first started training, that side ache made each run excruciatingly painful. I would be sore for days. Research suggested that I needed to start pacing myself using my breathing. To do so, I had to put away the Mp3 player and concentrate while I ran. Suddenly my long runs became doable and then enjoyable. The side aches were gone, and I could run without weighing down my mind with worries about my body or the distance. It has taken training to keep my mind concentrated on my breathing, but even outside of this physical training I’ve noticed that I am more centered, relaxed, and living in the moment.
When our minds are focused on things outside our current activities and control, we allow a toxic activity to rot away the power of the moment: worry.
When I am worrying about how many dishes are piled in the sink, I am not enjoying Micaela showing me her new block-stacking skills. When my mind fills with the challenges Adela will face in Kindergarten, my heart is not invested in our story time together. In John 10:10 says, “The thief comes only to steal and kill and destroy.” For me, the enemy’s best weapon has always been anxiety and fear.
But, God continually gifts me with new training to negate the enemy’s attacks. What a surprise that running would have brought this blessing.
So, I breathe in, I breathe out. I keep my eyes on the task, my mind in the moment, my heart in the present.
“Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.”
Have you ever tried an activity such as deep breathing to combat fear or anxiety? What other actions have you found helpful? Comment below and bless somebody with some new ideas.
Micaela quickly lost her cool. She held her hand out to the shelves of toys and made frantic noises.
I could guess what she was after. The school bus, a current favorite, perched out of reach. I asked her, “Do you want the bus, Micaela? Bus?” I said the word, exagerating the “B” sound beginning. It was a word she could almost imitate. “Bus?”
Micaela’s eyes widened. She whined, reaching her hand upward.
Part of me wanted to give in. I could pick up the bus, set it down in front of her, and she would be mostly happy for a while.
But, she needs to speak.
It took five more minutes before Micaela finally opened her mouth and tried to say the word.
These are painful days. We know Micaela is working on talking, so we have to give her ample opportunity to work on new words. It is hard for me. As her caretaker, I know her every mood and expression and can accurately guess what she needs or wants. But, if Micaela is going to grow, she needs to start using her voice.
Parenting is often challenging and frustrating, but I love how much I learn about my Heavenly Father in this season.
I too have had to learn to speak and find my “voice” when talking to God.
For a long time, I prayed to God saying words that I believed He wanted to hear. I was more concerned with how I appeared to Him than I was about having a true connection. How silly, God saw it all anyways. When I finally took off that mask and prayed to Him with an open heart, my words often tumbled into incoherent rambles. Today, I love praying with Him. It is sweet conversation with a loving father, an understanding friend, and a generous wise teacher.
God had to push me to find that voice. He had to hold back some of His peace and joy, challenging me to come to Him without a mask and use words meant just for Him.
We’ve got a long road ahead of us with Micaela. Her brain injuries were severe in areas involving speech and muscle control, but she cannot improve without us pushing her forward. Just as we will never find ourselves in true communication with our Heavenly Father until we throw off the masks and give Him an open heart and mind.
Then you will call on me and come and pray to me, and I will listen to you.
Do you ever feel like you are holding back your true voice from God?
Sometimes it rains. Sometimes it doesn’t. Sometimes the snows come too hard, or not at all.
I’ve lived in agriculture my whole life. Born to a rancher and later married to cowboy, I have watched the seasons rock our world. So much in this lifestyle is unpredictable and uncontrollable. Prayer and faith become essential to retaining peace.
Those who live in agriculture have a special opportunity to witness God’s awesome power in nature and come to trust in His plans and care.
It is so amazing watching these people, farmers and ranchers, live through the rough times and celebrate the bountiful seasons. I’ve watched families have to sell off all their cattle, get jobs in town, and still rejoice in God’s provision. I’ve watched those same families re-stock, plow up their fields, and praise God when their crops come in.
For a lifestyle that requires such intense labor, it is precious to notice how most still believe that they cannot do any of it without their Heavenly Father.
Brandings for me have come to be a celebration of God’s care. As each calf is counted, vaccinated, and marked, ranchers celebrate the new generation of livestock. It is such a thankful time, shared with neighbors and families. It also brings hope. Hope that the fall harvest and shipping will come and another year will end well.
I will be honest, sometimes I wish I came from a family where life and income felt more secure, a life where seasons did not change the number of hours my husband had to be out plowing, calving, lambing, or harvesting. Sometimes I wish we had a life where the number of rains would not determine how much we made for the year or a life where a bad snow did not put our animals in danger. But, I also think of all the hours I’ve spent with my Heavenly Father because I needed my fears soothed, my worries put at ease.
I will take the connection over the perceived insecurity.
After all, my hope is in Him alone.
Are there aspects of your own life that bring you closer to God?
And then she was three.
Micaela’s birthday is a time of immense joy for us. She has overcome much more than we ever thought possible and her future is full of hope. But, the momentous moment is accompanied by one huge change: no more early intervention therapy.
So, to catch some of us up to speed, in the State of New Mexico a child with developmental delays receives therapy at home through an Early Intervention agency until the age of three at which point parents can choose in-school therapy or clinics. We have been blessed to work with Physical Therapists, Occupational Therapists, Speech and Language Pathologists, Developmental Specialists, Vision Specialists, and Orientation & Mobility Therapists since she was discharged from the NICU in 2014. They all came to our home and interacted with Micaela in her own environment.
I will miss the constant education and encouragement they brought into our lives.
For months I have dreaded this day, this turning of age that will bring such a great change. It wasn’t until a practical friend told me to think about the pros that I considered the positives. I only had two, but they were big: Less appointments to coordinate for a child who also has seven doctors in her life. Also, perhaps I will relax and be more mom than therapist.
Either way, there are different days ahead.
I am so proud of Micaela. She defies odds and is filled with personality and determination. God had provided for her and our family. As I meet her teachers and the therapists who will provide service for her in the school, I am resolved to meet this change head-on.
Different days are ahead. New challenges. New blessings. New ways in which we will witness God’s awesome power and incredible love.
This time of the year there are many people peering into the future and very different days of their lives. It is wedding season with couples committing their lives to each other. Some parents are expecting their first child with anxious excitement. Countless graduates complete high school or college. For them all, life won’t be the same.
But God, remember, has not changed a single bit. He walks this journey, His hands on our shoulders, His love in our hearts, His peace in our souls.
Can you think back on a season of great change? As you moved forward, how did you experience God's goodness, care, love, protection, and grace? If you are looking at big life changes right now, take a moment and commit your future to the God who will walk this journey with you.
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