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?
I looked outside to the frosted world that turned the fur trees to sparkling towers in our yard. The world was still. Everything was alive, but bedded down under a small layer of snow.
Nature is amazing, isn’t it? I‘ve seen storms where I was certain trees or plants would surely be destroyed by the cold, but come spring they stretch out green limbs and leaves, alive once more. After the energy and activity of the summer, I am sure their winter rest is well-deserved.
We can learn so much from the systems of life that God created. When I watch the winter world I am reminded of the precious children’s prayer:
“Now I lay me down to sleep
I pray the Lord my soul to keep
And if I die before I wake
I pray the Lord my soul to take.”
I prayed this as a child when thoughts of ghosts and goblins kept my juvenile head full and my eyes from wanting to close. Eventually I always fell asleep, believing God watched over me.
Rest in an intricate part of life. Why does our society view it as such a nuisance? Rest restores us. Rest makes us more trusting of God as we sit back and watch Him care for us while our minds and body take a break. Rest helps us stop and refocus. Rest helps us prioritize our lives.
I stepped away from the window and curled my fingers around a warm mug of coffee. I’m in a different season now. I’m indoors more and not out in my garden or mowing my lawn. Even the chickens started laying less eggs last fall when the days grew short. Everything rests, as do I.
Today I give thanks for seasons that encourage me to change my pace and trust in God.
What do you enjoy about the changing seasons? Do the winter months bless your own life in a specific way?
I wish I could go to my mom, give her a big hug, and tell her she was an amazing woman. At one point she had four children age six and under. I am sure our house rang with a lion’s share of tantrums, screams, yelling, and tears that came with the territory of raising young children and babies. So, I totally understand why she reached the point where she didn’t tolerate shows of negative emotions. We were told to stop. We were told to be quiet.
Later, as an adult, I saw any show of sadness or anger as embarrassing, even rude. To make matters worse, I didn’t really understand how to deal with my own reactions to many situations in a healthy matter.
I was visiting a close friend a few years ago. Her son had just turned four. He had a bad case of the “whines”. Instead of getting onto him about his display of emotion, she quickly put an end to the bouts by simply asking him what he was upset about and then giving him some options about how he could deal with his sadness, fear, anger, etc.
I wondered if this tactic was not “baby-ing” the boy. Our parents would have bluntly told us to stop crying. However, today, that same little boy is very emotionally solid. He not only deals with disappointments and hurt in appropriate matters, but he also is positive and encouraging to others.
Recently, I reflected on how powerful it is for us to acknowledge the feelings of our little ones. The girls and I were in Target and Adela desperately wanted to buy an extravagant beaded and feathered pillow (so weird!). Unfortunately there was neither room in our budget or our vehicle for such an item so I told her, “No”. She immediately fell apart.
I remember staring at her red face and teary eyes. The words, “Stop crying.” Were ready to fall off my tongue, especially with half the people in the store staring at us. Instead, I took a deep breath and got down on eye-level with Adela. I said, “Hey, that makes you sad, doesn’t it, that we aren’t going to buy the pillow? I am sorry. We can’t buy that right now.”
I swallowed and continued. “So, sometimes when we are disappointed we can’t have something, then we need to remember to be happy with what we have and that we have other things to look forward to.” I went on to talk about the new school supplies we were buying and that we were headed to her cousins’ house to play.
Her tears dried. She smiled. Life went on.
Just like that.
Acknowledging the feelings of our children is a tough job. It takes an extra level of patience. It asks us to be compassionate. If we simply discipline them and don’t take the time to teach them, then they will never know how to handle hurt at a level of deep maturity.
Goodness, even Jesus cried. Jesus was angry. Jesus experienced hurt and disappointment. It is part of life and I am thankful that I have an opportunity now to help my girls grow.
What tactics have you used to help your children understand how to deal with their emotions?
I wanted to write a great, fantastic, and helpful post about marriage, but I kept staring, paralyzed, at the screen.
Marriage is too complicated, messy, beautiful, and varied for me to write anything helpful. Not me, anyways. But, I do feel passionate about the subject. God gave us marriage. It isn’t something to take lightly.
I love my husband. He is my favorite blessing. He is my biggest fan, my most ardent supporter. He makes me feel strong and beautiful. Because God gave me a man like him, I have become the woman I am.
That is my story and my marriage.
This month we will have been married 11 years, lived in four countries, welcomed three children into the world, said good-bye to one. We’ve cried together, laughed together, and committed to be a dedicated team with our eyes fixed on God.
But what makes a good marriage? How is it shaped and sheltered? I’ve read lots of books and articles and listened to many speeches and sermons on this topic. There is a plethora of advice to choose from. But, the one that sticks out the most for me is that a good marriage has been fought for.
A good marriage has been under-siege but has come out stronger. A good marriage has seen dark days but fought hard so that vows and promises wouldn’t fall apart. A good marriage has had to become flexible while still unbreakable. A good marriage has been anchored in love—a husband’s love, a wife’s love, and God’s love.
Romantic love is on the minds of many during the lovey-dovey season of Valentine’s. I totally understand. There are few things sweeter, here on Earth, than the love of a good man and a marriage that stands the test of time.
If God has blessed you with a partner, I pray He gives you both the strength, wisdom, and love to fight for your life together.
Happy Valentine’s Day, my friends!
In your own relationships, what advice have you found to be helpful?
Being the mother of young children is the hardest chapter of my life. I've talked to mothers who have survived this phase and they tell me that motherhood is not easy. They tell me that those years when your children still wear diapers and and live off froot loops are some of the most difficult times to get through, but also the sweetest. They remembered those years of having no breathing room, little sleep, and little voices constantly begging for hugs and fun.
Its rough. But each woman told me they learned more in those difficult years than ever before and the women who emerged were stronger with more inner beauty. Check out the list below and take comfort in the intense training ground that comes with parenting these little ones. This is why beautiful and strong women emerge from motherhood.
1. Singing the words to "If Your Happy and You Know It" for the 100th time that day, because you hurt, too, with the crankiness of teething. Seeing your children hurt makes you empathize on a new level.
2. Choosing to discipline your child though it pains you more than them because you must give your child a better future.
3. Finding inner peace in the middle of the 10th epic tantrum of the day. If you can do that, you can find peace almost anywhere.
4. Connecting with strangers in stores because we understand when their kids are just as grumpy as ours are. Now we know what it means to put ourselves in other peoples' shoes.
5. Learning how to give up pride and accept the love and help of others.
6. Learning the hard way that in order to take care of our families we must also treat ourselves with respect.
7. Giving our own selves mercy as we realize we could do everything poorly or do a few things well.
8. Letting go of plans, ideas, and dreams not because we gave up, but because we realized something sweeter.
9. Being pushed beyond known physical limits as we carried a child, gave birth, then went without good sleep for months--now we know where true strength comes from.
10. The countless days, weeks, and months that went by when you were unable to meet with friends or have long phone conversations undisturbed by crying or dirty diapers, you found a perfect friend in your Savior.
11. Leaving the house with no makeup and a 30-second hairdo because other things were more important made you find you self-worth in something deeper.
12. Learning how to budget, prioritize, and use all resources wisely because there was really no other option.
13. Making a marriage or relationship work and continue to grow even when the demands of home and family seemed to eclipse your life.
14. When we finally make it out of this season, we are going to know how to care deeply about and for families with small children.
Look at that woman in the mirror and give her a smile. She is much different now. She is stronger, her heart is bigger, and she is beautiful.
My love to you! Thank you for blessing the world as you raise up beautiful children.
Click on the button above to receive newsletters, weekly encouragement
and a FREE eBook.
"...and God was already there with me."