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.
I just felt so lost, so empty, after I put Micaela down for her nap. My heart tore with the hurt that I am messing us this motherhood stuff. Poor Micaela. Monday mornings are always hectic. It always makes me feel guilty because I’m not a mom who has to gulp coffee from a travel mug, send kids to school/daycare, and then commute to work. No, I sip my coffee from a decorated cup and simply roll up my sleeves. My husband and I are constantly thankful that I get to stay home and care for our family full-time, but I still struggle and feel incompetent.
My friends and readers are rolling their eyes. They don’t believe me. But, let me assure you, I feel so lost. The house is never super clean. There are stains that I just leave in fabrics. I zoom through Adela’s homework with her. Worst of all, I often don’t give Micaela all the time and attention she needs for growth.
So, after a Monday morning where I’ve done a dozen chores, played with Micaela a little here and there, and let her watch cartoons, I feel so USELESS.
I curled up with my devotional after getting off the phone about some business, and my heart started freaking out. I begged God for supernatural understanding of how I am supposed to handle my life, my work, my family. I squished my eyes shut hard, trying to block out the noise of my own thoughts and asked God to show me where I am most broken so that I could do this all perfectly.
He answered me so gently: Control. Worry.
Like a daily death, I must remember to give God my life. Daily. Hourly. Moment-by-moment.
My devotional made my eyes fill with tears. The author spoke of Mother Theresa and how she was once asked who would carry out her work after she passed. She said, “God would find someone even more useless than I.”
God, I am useless. Useless to do any of this well without You flowing through every lifting of my finger, note of my voice, and step of my feet. And when I let You be in everything I will find Your peace and strength.
Probably one of the most liberating things we can do as mothers is admit we are useless. Useless to get any of this right, any of this done well, anything full of goodness without the sweet divine interventions of our loving God.
A friend once told me that with my attitude and background in education I was destined to be Micaela’s mom. But all that equipment never seems like enough. When I focus on what I alone am capable of I am lost in a sea of fear and worry.
I am useless without God.
It is probably one of the most joyful and liberating statements of my life.
Is there an area of your life that you can’t seem to get right no matter how you struggle and strive?
Last September I wiggled my toes within my running shoes and stared at the road. My fingers tapped the sides of my shorts and I bit my lip.
It had been five weeks since I had done a long run, three weeks since I had ran at all. I had no idea how far I would be able to go now. With no respite care, a husband trying to get wheat sowed, and a horrible cough & cold, I had stopped getting out to exercise. But, there were no excuses for that day. All I could do was stare at the route in front of me.
Starting over takes courage.
I had spent the summer training for a 10k, but when fall came, I put my training aside. Now, my race was only a couple months away. If I was going to do it, I needed to start over.
I took a deep breath and moved my feet forward. Every muscle felt stiff. Every movement uncomfortable. Only a few weeks before the same movements had liberated me. Pounding my feet on the dirt and pavement had been exhilarating. Now it was only work. That first run back in training was only two miles and it completely wore me out.
But, I kept going.
As I ran I thought about why it had been so mentally and emotionally difficult to get my feet back on the road. I think it was the fear of failure.
When you have to start over, part of you already feels you have lost. If you have to begin something again, it means has stopped and usually the reason it stopped was our responsibility. To be honest, I could have found ways to keep training. I could have went on walk when my cold kept me coughing. I could have fought harder, but I hadn’t really fought at all. Now, all I could see was that I would be happy if I was able to complete the 10K race. Before I had been training to not only complete it, but to get a decent time.
Starting over takes courage, but it is also one of the most powerful self-growth decisions we will ever make. When we choose to start over, we begin to realize that we learned so much from our first go-around, so that when we begin again we are usually wiser and stronger. From diets to exercise to spiritual growth, starting over is the best things we can do.
Everyone fails, messes up, or gives up now and again. But that does not have to define us. Even if we have to climb the same hill a dozen times, I would rather get to look at my life from the top than to groan in despair at the bottom.
Have you ever had to start over to finally get where you wanted to be?
It is a frightening ugly thing to watch your small child have a seizure. Her little body jerks uncontrollably reminding me of a mechanical toy that is running out of batteries. The last couple episodes confirmed undeniably that the seizures come when she sleeps and my own rest has become disturbed.
Sanity can only be mine when I trust God. I spent 2017 battling fears and worries, but through it have more faith and strength than ever before. Micaela’s epilepsy has become my very own version of spiritual super glue, keeping my heart and mind fixed on the Savior.
A friend asked me if I have ever been angry about Micaela’s difficult journey. The honest answer is, “YES.” It isn’t fair that her sweet soul must fight for everything that comes easy to a “normal” child. She has spent the past year working, with endurance, on walking, talking, eating, and a hundred other developmental feats. To throw seizures into the mix feels like a punch below the belt.
But, at the end of the day, epilepsy is simply part of our family’s story and I can either be angry and resentful, or I can go to God, my Father, and find the peace and joy that will carry me through each and every day.
For many years, the story of the storm that Jesus calmed, has been one that I’ve turned to often in the Bible. You can find it in Matthew 8:23-7 and Mark 4:35-41. I can imagine the terrified sailors and panicked disciples. How long did they tug sails, tie ropes, and toss freight overboard before they ran to God? How very human of them, attempting to create their own safety. But true peace can only be found in God. With a single word He can calm the wind and waves.
We all face terrifying storms in our life that threaten to tear apart our world. God waits for us to come to Him. Any situation could become the spiritual super glue that will fix us to our Lord and build us into ever more beautiful souls.
What catalyst in your own world has become spiritual super glue, fixing you close to God?
Adela’s brown eyes were full of exultation and horror. She held out the tiny little tooth to me, her tongue moving over the excavation site slightly filled with blood and said, “It’s gone, Mommy.”
Poor baby. I had a hard time masking my own pain. My little baby was gone and had left to be replaced with this growing daughter. She held in her hand the very first tooth God had ever given her. It was gone, no longer a part of her little body.
I spent many hours talking to her over the next few days about the process of losing teeth. I told her she had new ones, adult ones, pushing their way upward. I told her they would be strong, wonderful teeth that she would use (Lord willing) the rest of her life. It was okay that little pieces of herself would fall away, for they would be replaced by something even better.
What an entirely human experience. It is a lifelong adventure. Little pieces of ourselves are being hacked away or changed so that new, better, more useful parts can be given a place in our life. We often cling to familiarity. We fear the pain that change forces on us, but it must happen. Life is in constant motion.
My mind remembers the passage from 1 Corinthians 13:11, ESV, when Paul said, "When I was a child, I spoke like a child, I thought like a child, I reasoned like a child. When I became a man, I gave up childish ways." We are called to put things behind us that aren’t necessarily bad, but are no longer fitting for our stage or season.
I admired Adela for the easy way she placed that tooth under her pillow, knowing that in the morning it would be gone. Gone for good. I pray that I know how to do that each time God shows me the things that must be left behind.
What parts of yourself have you let go of as you moved through different seasons of your life?
I loved doing a Facebook live video about setting goals. Enjoy. :) Note: The first 20 minutes are solid but then we had some audio/visual issues. We figured out what happened and thankfully will have a fantastic video this week. If you want to join us, it is at 7:40 pm Thursday, January 11, MST.
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