I settled into my chair and winced as I heard Adela’s squeal of laughter. Nobody else minded. Our preacher, Pastor Tim, grabbed his guitar and we began Bible Study.
Wednesday afternoon Bible Study is new to our church, but I feel incredibly fulfilled by it. For the past few weeks Pastor Tim has been teaching us the commands of Christ. Every week we dig into the Bible and all the theology and history that comes with it. I leave feeling refreshed and hopeful.
I leave well-fed.
Our spiritual hunger is a mighty force. I’ve noticed that the more I feed myself through Bible study, devotions, and Biblical teaching, my appetite only increases. I used to fight to stay off social media, to stop playing little games on my computer, and to not binge watch TV. However, developing an appetite for God’s word naturally weaned me off many worldly interests.
Isn’t that cool?
Right now, we are in a season of Lent. Often, during the 47 days between Ash Wednesday and Easter Sunday, Christians opt to give something up in order make space for prayer and reflection. It is such a fantastic practice, but I’ve also noticed that in our human nature we often give up one worldly vice and fill the space with another earthly pleasure. Unless we are purposeful about our plan to grow closer to God, we will find that the Devil is ready and willing to distract us in our quest.
I know that there are many areas of stress in my life that I could easily fill up spaces with negative coping mechanisms or brain-fillers. But, in a step of faith I have chosen to cultivate my hunger for Bible Study and fellowship with my Christian Brothers and Sisters. This is my chosen coping mechanism. My chosen fuel. And, my reward is the peace and joy that comes with God’s truth.
This season of Lent, I am happy to lean in to the emptier spaces that can be filled with God’s word and fellowship. May my hunger be satisfied and the Living Water renew my soul.
For the word of God is alive and powerful. It is sharper than the sharpest two-edged sword, cutting between soul and spirit, between joint and marrow. It exposes our innermost thoughts and desires. Hebrews 4:12, NLT
Did you give up something for Lent? Were you active in your plan to fill it with God’s word and wisdom?
Sometimes God Asks Us to Move. Sometimes He Asks Us to Wait.
I hate it when plans go astray. Something about my nature needs to be moving forward, handling whatever comes next. I hate the ‘not-knowing’ because it might lead to ‘not-doing’. Jovani, my husband, feels the same way. It is one of the reasons we work so well together.
So, when our neurologist in Albuquerque asked us to cancel our procedure for Micaela’s VNS and get a second opinion at another Children’s Hospital, we were disappointed that our plans had to be changed.
The day after Valentine’s Day, I sat in the Specialties Clinic at Albuquerque’s Presbyterian hospital and listened to our precious neurologist make an argument for repeating the long difficult process for a surgery evaluation at Phoenix Children’s Hospital. Phoenix has another surgery option that uses lasers on multiple spots of the brain, severing those spots' connection to the rest of the brain, without removing tissue. They can successful treat seizure spots on both side of the brain leaving a patient seizure free.
But, it means no VNS, at least not until we’ve consulted the specialists in Phoenix this summer.
I was devastated. We had a treatment option right within our grasp and then it was gone, shoved to the back-burner. The next available appointment in Phoenix is not until July. That feels like forever.
I’m reading through the Bible again this year. I was reading in Numbers the other morning about the cloud and the fire that God placed above the Israelites while they wandered in the desert. God was in the cloud and the fire. He gave them shade by day and light by night. When He rose above them and moved, they were to move too. When God stopped, they stopped. They might make camp for a day or a year and wouldn’t leave until God showed them the next step.
Right now I feel like those Israelites, encamped in a period of waiting for God’s movement. But, like the Israelites, it is so foolish to grumble. God is my shade when the sun gets too hot and He is my light in the darkness. I have nothing to fear. He will provide me with food, both physical and spiritual, so that I am strengthened and prepared for His plans.
In life we are continually either on the move, hoping for a rest, or we are waiting to break camp. However, God is a constant that we can count on. We have nothing to fear.
Right now Jovani and I are in a holding pattern in our care for Micaela. I will not miss the opportunity to grow with my God as we wait for the next step. Please pray for our patience and peace.
The Lord watches over you--
Do you feel you are in a period of waiting or of moving right now? How do you feel most blessed by God at this moment?
Are You in a Season of Rest and Renewal?
A couple weeks ago I swiped the spoon twice more around the coffee cup, watching the milk blend in in swirls of tan. The smell of that first cup invited me to take a deep sip. I did. Then I put it down.
I was half-way through my daily Bible reading when I remembered the cup. I sipped again. It was cooler now. Funny. When was the last time I let that happen?
Usually I gulped down that first cup like a life-line and was half-way through a second before any written word could make any sense. It was then that I realized that after almost ten months of desperate prayer, God had answered.
I was rested.
My raccoon eyes were fainter. The worry wrinkles softened. My brown eyes smiled back at me in the mirror. I was rested.
Who would have thought God would have brought an answer to my prayers through President Trumps defiant stand on a wall bordering Mexico? Through the Government Shutdown, my husband caught up on work at the farm and gave me many nights of restful sleep.
Last May, Micaela’s seizures worsened. To care for her, Jovani and I would check on her each hour during the night. All of her seizures come while she sleeps. They call them “nocturnal seizures”. Miceala’s seizures are freight trains. Once they get going it takes a lot of rescue medications and care to get them to stop. Always. Its rough.
I was running in the crisp winter air a few days ago, listening to a podcast. It was an interview of Blake Mycoskie by Levi Lesco In the interview Blake, the founder of TOMS Shoes, talked about God giving him a period of rest between seasons of difficult entrepreneur ventures. The rest got him ready to start a new project targeting violence in our country.
I would soon go to Colorado and spend many days in the hospital with Micaela. Jovani and I would have to take shifts and manage her time during a long video EEG. There would be travel and the heartbreak of being far from Adela.
Oh, God! How beautiful is the way you provide for us.
I faced the difficult days of our stay at Children's Hospital Colorado with a rested mind and body.
I don’t know that I could have asked for a more precious blessing.
Life is full of seasons. Perhaps that is the only thing that we know to be true. Whatever season you are in, I pray you find God’s provision constant. It always is.
In peace I will lie down and sleep, for you alone, LORD, make me dwell in safety.
Are you going through a season of rest and renewal?
A Recap of Our Time Spent at Children's Hospital Colorado.
Last week was not what we hoped, but we trust in God’s sovereignty. For those sweet friends and loved ones who have been praying and wishing us warmly, I wanted to let you know how our trip to Children’s Hospital Colorado went.
We checked in at the hospital at 7:30 Monday morning. By 9:30 they had hooked her up to the EEG machine so they could watch for seizure activity in her brain waves.
Micaela got used to her new head gear quicker than Jovani and I expected. It was actually a neat set up. They hooked all the electrodes to her scalp with a conducting “goop” and then glued gauze on top of that. Afterwards, they wrapped her head and tucked the wires in gauze before sticking the EEG box into a little backpack. The box had such a long cord that as long as she kept her backpack on, she was able to roam around the room. Thank goodness for that! She is such a busy girl, I was worried I would have to keep her confined to sitting most the time, but she was able to do her thing.
Jovani and I took shifts. The first night he went back to the hotel to sleep. The doctors put Micaela on half her normal dose of medicine. As soon as Micaela went to sleep I slept as well. Occasionally I would pop my head up to look at the monitors showing her vitals to be normal. We weren’t surprised when she didn’t seize that night.
Tuesday they took her off meds completely. It was my turn to sleep at the hotel. With a lot of prayer I settled into sleep. Jovani and I both felt like the seizure would happen soon.
At 5:30am, Wednesday morning, she went into a seizure. They were on their third medicine trying to stop it before they decided to intubate her (give her a breathing tube) so they could push even more medicine without compromising her respiration. In all, the seizure lasted 4 hours.
As scary as that was, the neurologists were disappointed to find that the seizure had come from the unexpected side of her brain.
Micaela’s seizures usually cause jerking and twitching on the left side of her body. Those seizures come from the right side of her brain. A handful of times we’ve seen her go into a seizure where she was stiff with a fixed gaze to the left. The doctors got to witness her rare seizure, the stiff or “catatonic” seizure and it came from the left side of her brain. With Micaela’s brain injury from birth, the neurosurgeon doesn’t want to take out parts of her brain from both sides. It could permanently compromise her mobility and other areas of her daily function.
However, God is amazing. If she had went into her normal seizure of jerking and twitching, the doctors might have never seen the seizure activity on the other side of her brain. We would have qualified for the surgery, had part of her brain removed, and then still had dangerous seizures. How great is our God?!
Micaela recovered 36 hours quicker than the doctors predicted. They removed her breathing tube by about 8pm and I spent Wednesday night trying to keep her quiet and calm so her IV would stay attached.
Our care at Children’s Hospital Colorado was exceptional. I loved the time multiple doctors and specialists took with us. They even came by and made plans for next-steps for our seizure care. We will be getting a VNS implanted near the end of the month. Who knows, it might be exactly what our little girl has needed all along. (If you want to read about a VNS click here.)
We were discharged Friday morning. Too tired to drive, but sick of being in tiny enclosed spaces we walked through Bass Pro Shop and went out to eat dinner that wasn’t served with paper napkins.
Saturday Adela was super excited to have us back, but maybe not as excited as we were to have her. She loved every minute she spent with her grandpa and Abuelos while we were gone.
Sometimes things don’t work out like we want, but our Pastor gave me a challenge a few weeks ago, he said it was okay not to pretend that everything was fine. He said that our joy can be found in finding all the ways God provides us. I have taken that challenge and been blessed to see God move in our lives this past month.
The adventure will continue. Today we are home—safe and happy—and that is enough.
I just wonder if I will ever get all that glue washed out of her hair.
Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows.
If you are going through a hard time, know that you don’t have to pretend to be okay. Find joy in God’s provision. He always stays close.
What Do We Do When the Future is Uncharted?
I pushed down the horror that rose in my throat as the middle-aged neurologist gave us an over-view of surgery. The most extreme surgery they did was cut out half of the brain. It would leave an individual with limited use of the left side of the body.
I resisted the urge to gather Micaela up in my arms and flee the little room with it’s cheerful paint tones.
He was a smart doctor, laying out the worst possible scenario and getting us past the shock. Most likely, if Micaela was a candidate for the surgery, they would only have to remove a tiny part of her frontal lobes and the side effects would be minimal. Still, it was brain surgery. I swallowed. Were we doing the right thing?
Next to me, Jovani listened intently while Micaela slept in his arms. You could barely see the cute pink shirt and blue jeans she sported underneath my sweater that we had tucked about her. I had taken painful care to make sure she arrived clean and wrinkle-free, but she had chosen to sleep through our appointment.
It gave us time to talk.
There were many options for our little Micaela. There were diets, supplements, VNS, alternative medicines, and prescription drugs. They might succeed in lowering her number of seizures and make them less severe, but they would never make her seizure free for the rest of her life. With the recent episode of 7 + hours of night seizures that she had January 1st still fresh in our head, we were ready to proceed with the screening process to see if she was a candidate for surgery.
Do you ever feel like you live your life as a parent in the gray area? Rarely do we encounter a black and white choice for our children. My mind spun with “what if’s” and my anxiety rose until that still small voice broke in.
You are only here now.
I breathed. In and out. Right now we weren’t making any decisions at all except agreeing to more EEGs. Right now Micaela was peacefully spending her morning in the warm security of her father’s arms. She was happy and her parents were exploring all their options to give her a better future.
God promises to be our rock, our fortress, our salvation, and our rest. (Psalm 62:1-2) So, when things seem gray, commit yourself to mentally stay in the moment and move forward one toe at a time. You will find God’s peace shines light on the path in front of you.
We will be heading to Children’s Hospital Colorado again in a week for several days of EEG video monitoring. God goes with us every step of the way and keeps us close.
If you feel paralyzed in a gray area of your life, ask God for enough light to move forward with peace. We don’t have to have all the answers right now. We just need enough of God’s truth to see the next step we need to make.
Truly my soul finds rest in God; my salvation comes from him. Truly he is my rock and my salvation; he is my fortress, I will never be shaken.
What is the hardest choice you ever had to make? What made it hard and how did you move forward?
Learning the Art of Living in the Present
The house stood quiet, asleep and surrounded by snow. It had been the best day ever. I smiled.
I sunk lower into the chair and cupped the warm peppermint tea, breathing in the soothing scent. Out of the corner of my eye I could see the kitchen sink stacked high with dirty dishes. I let out a deep sigh and shook my head. I would let God provide time to care for the dishes tomorrow. Today I was on holiday.
It really didn’t make sense. I had been awake since 5:30am, had cooked three meals and three snacks. I had chased four children and kept them entertained in the freezing weather. But, it had all seemed so…fun. Our snow day with Jovani home had been a blast.
Perhaps the key simply was that I had decided to take a day off. Therefore, I designated every task as an enjoyable activity and not work. Nothing had been a chore though many chores had been done.
Vacation. Holidays. Days off. My mentality changes when I am supposed to be enjoying myself. Today I slowed down to notice the shade of Micaela’s eyes when she smiles. I dove in to coloring when Adela wanted to do an Art project that took up the kitchen table. I laughed with my nephews as we played card games. I snuggled up to Jovani and crunched popcorn.
I was busy all day, but I savored the moments with my family. I savored sights, smells, tastes, sounds, and touches that ordinarily get brushed out of the way as my mind zooms to the next thing I need to get done. I was present with my family today.
I don’t do that much anymore.
How sad. How difficult it must be for my little girls to connect to a mother who is more engaged with her to-do list than their delights and fears. How disappointing it must be for Jovani to try and enjoy my company when all I can do is re-hash my day or agonize over what tomorrow will bring.
Any of you there with me?
Goodness, we have to change this. We keep praying to God to help us handle our responsibilities and ease our stress but we don’t trust God enough to settle into a single moment without hopping our minds away to the past or future.
I think I found what I want to work on this year.
I want to work on being here.
Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.
What have you had trouble engaging with and enjoying lately?
I looked at my sleeping girls last night and wondered how I possibly had any peace.
But, I did. I had amazing amounts of peace. I was worn out, my feet hurt, my head hurt, and my eyes could hardly stay open. But there was peace.
Last Sunday my small Bible Study class took home the assignment of practicing thankfulness in order to unlock God's peace.
Monday being thankful was easy. It was a normal day. The girls were happy and active. Life was low-key and restful. I awoke Tuesday ready to get in a long run. However, one look at Micaela and the plans for the day shattered. She was seizing. A storm blew in the night before causing a power outage and at 5:54am that morning the power kick-started the air-conditioner. The noise startled Micaela into a seizure that she remained in and out of for the next two hours.
But, I had so much to be thankful for. I was thankful for the volunteer EMTs who got us to the hospital and the nursing staff and doctors who took care of us. I was thankful that Shaylee, my friend and respite care provider, was there to watch over Adela and later pick us up from the hospital. I was thankful for the recently downloaded Bible app on my phone that gave me God's word and my devotionals to keep me company as Micaela rested. I was thankful for the large cups of coffee and hazelnut creamer handed to me by a kind nurse. I was thankful for a Sonic cheeseburger when we were discharged and for the 4 1/2 hour nap Micaela took that afternoon while Adela and I made cookies. I was thankful for Micaela's smile when she woke up and hearing her say, "Mama." when I came in her room. There were countless ways God was gentle and loving towards me and mine.
Of course, there is another way I can tell the story. A story full of fear and anxiety and the injustice of my family having to suffer this way. But, as I would tell that story, I would have no peace. And God's provision is stronger than all and everything we will ever have to endure.
Can you believe that?
Can you, in your belief, trust God?
I had never truly listened to the question before, "Is she potty-trained?" Today, when they asked I immediately said, "No," but then the light bulb went on. They need a urine sample, duh! After all, we were at the pediatric nephrologist (kidney specialist). Micaela totally knows how to get that done and with a little adjusting, the nurse got us set for Micaela to give us her first-ever urine sample.
However, my pride that Micaela had moved forward in life quickly dissolved. As we waited in a Disney-themed office my mind went into over-drive.
We've never given a urine sample before. What if they find something wrong? What if something is wrong? What will it mean? What if it is extra-awful because I never thought of how Micaela was capable of doing giving a sample before and now a problem has been growing and growing...
I swallowed and had a hard time focusing on the Highlights magazine story that I read to the girls. I pushed the magazine away and let the girls play. My stomach turned.
On my way to Albuquerque I had listened to a podcast sermon in which the pastor said that the best way to live the way God's wants us to live is the preemptively decide how we are going to react in our weakest moments. I know that I am given to worry more than anything, and on that drive I had flippantly told God that I would rest in His provision instead of spinning the wheels of anxiety.
That promise popped into my head as I waited for the nurse practitioner to knock on our door. Resting in God's provision doesn't come naturally to me.
I smiled, feeling God chuckling at me. I let out a deep breath and gave my worry to Him. I thanked Him for Micaela's amazing medical care. I thanked Him for the opportunity to get her kidney functions tested today. Then I asked Him to be with us as we walked out the next-steps in our lives--whatever they might be. My shoulders dropped as peace seeped into my heart.
The knock came a few moments later and within fifteen minutes I was reassured that Micaela's test had showed nothing alarming and the nurse practitioner and the doctor were both very pleased with her progress.
Ah, God is so gentle. He wants me to get a little more practice at this resting He calls me to and He greatly provided for us today.
God is always calling me, teaching me. He loves us deeply and wants us to open our hearts to Him. Today's unexpected worry came with unexpected peace. Not because the result was desirable, but because my God's love for me and mine is incredible.
Trust in the LORD with all your heart and lean not on your own understanding;
by Ashley Taylor
Parenthood is already challenging enough, but when you are hindered by a disability even the smallest of tasks can become enormous challenges. It is important that you remember that you are never alone in this--God is on your side. Parenthood is a wonderful journey, providing an amazing opportunity to grow in yourself and in your faith, but you must also do some preparation.
Setting Up for Functionality
As you prepare your home, you should be aware of your available space. Keeping up with a child as they grow can be a constant battle. You need to be sure that anywhere your child can go, you can go as well. If your home is a little crowded, you might consider decluttering so that you can access every nook and cranny they could possibly get into as well as make room for adaptable products such as cribs, baby carriers, and changing tables. A functional home is also a safe home, so make sure the floors are slip-free and free from tripping hazards. As a parent, you’ll worry about your little one, and that’s natural. Pray for your little one daily as they grow and change. Remember, God’s hands are on them always.
Being the proud parent of a newborn also means that you will be introduced to many new baby-raising products. An influx of new objects in your household can be confusing for the blind or visually impaired. Be sure to label these items appropriately with textured tape or braille so that you always know what you are giving your child.
The one thing you quickly learn as a parent is to expect the unexpected. Even the most proactive parents still wind up in scary situations with their child. Therefore, it is imperative to always have a Plan B, and have a phone close by ready to dial at a moment’s notice.
You can’t always expect to know everything you need to do and you also won’t always be in the immediate vicinity of your child. Baby monitors are good for giving visual and audible cues on the state of your child when they are sleeping or playing in another room. Keeping a monitor nearby means you can always keep tabs on your child, even when you are not by their side. Find peace that God is always watching over your child, so reach out to him in times of need and triumph.
Parenting with a disability may be challenging, but it’s not impossible. There are plenty of resources available to help you along the way. While you can expect there to be difficult moments along the way, you’ll find no greater joy than the bond you share with your child and the thrill you’ll experience watching them grow as a child of God.
Start children off on the way they should go, and even when they are old they will not turn from it. Proverbs 22:6, NIV
Ashley Taylor is a freelance writer, photographer, and advocate for people with disabilities. She created DisabledParents.org to provide information and resources to other parents with disabilities. When she isn’t working, she enjoys spending time with her husband and two children.
My stomach was nauseous, my heart sick for days. Should I? Or should I not? The question went in cycles in my head. I knew what felt most right for the moment, but when I thought forward to the months and years ahead I feared the repercussions of my decision.
My precious nephews, born just a few months apart, were to be Baptized into the Catholic Church. It was a huge moment for the families and for me. I’m not part of the Catholic Church, but there are few things sweeter than having a mother and father dedicate to raise their baby under God’s guidance and protection.
Just a few days before we were to get on the road to head that way, Micaela had a seizure. My mommy-instincts suspected that she seized due to mild sleep deprivation and getting over-stimulated at the New Year’s Eve dinner we had with family. An overnight trip felt like a bad gamble. I knew it. But it was breaking my heart. I don’t want to be a mom that puts unnecessary bubbles around her children. I want them to experience life and family. And yet, …
My husband agreed with me. Micaela’s seizures were becoming more frequent and it made no sense to expose her to a long weekend trip with unpredictable sleeping arrangements, lots of noise, and stress. And yet, …
I despaired and worried that I was turning into that overprotective mom that would keep Micaela from everything she needed. To be honest, I was also very concerned that I would hurt the feelings of the family I loved by not being there.
The morning Jovani and Adela were set to leave, we did our daily devotional, Every Day in His Presence, by Charles F. Stanley. As if God knew my torn heart, the reading of the day was about feeling indecisive. Stanley wrote, “Therefore, rest assured that even at this moment the Father is teaching you to trust Him. And He will give you just enough light on the path to walk with Him one step at a time.”
Wow. I knew the first step before me: protect Micaela. It was obvious.
I looked around at the packed suitcases and sleeping bags and let out a deep sigh. Peace flowed in. The future with Micaela’s progression and development, as well as the relationship I share with my beautiful family were in God’s hand.
The path lit at my feet reflected the need to protect this fragile child from a seizure that could wipe her out for days and land her in the hospital.
Next time, I hope I look down the path and am content that this first step is illuminated. It is enough. It is sufficient. Life is not dark and confusing for those who rest in God. We simply must put one foot in front of another and have faith.
How often do we come to a fork in the road and are terrorized by the unknown? We’re are paralyzed because we fear the long-term ramifications of a bad decision. However, if we breathe and look down, we will see just enough of the path to move our toes.
Have you ever been faced with a huge life decision and felt that you were incapable of making the best choice? How did you pick the direction you would go?
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"...and God was already there with me."