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?
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.
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?
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 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?
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?
Buying presents for the holidays can be a huge source of stress for me. Though I have come a long way in my healing from Approval Addiction, I tend to over-think everything when it comes time to give someone something. It doesn’t help that gift-giving isn’t my love language and that makes me have a large lack of intuition when it comes to trying to bless others with a tangible blessing.
When going through the story of Jesus birth in Matthew 2:1-12 I lingered on the account of the wise men who came from the East to give the blessed baby gifts. The men traveled a long distance, coming from a far land, to bow down before the Christ and give him gifts of gold, frankincense, and myrrh.
If you know me, you won’t be surprised to learn that rules and guidelines make me feel secure. When I read the story of the wise men my heart found a little peace. I had a Biblical example of how to give presents.
If you want to make gifts special for the season, perhaps one of these tips will help you as well.
As you go out to do shopping and open your computers to browse, I hope some of these thoughts give you peace. I love how Christmas gives us the opportunity to bless so many around us.
Note that wrapping the present and making it look pretty wasn’t listed? However, I like lovely things and I will still be curling ribbons while I watch “It’s a Wonderful Life.”
What do you think about when shopping for those you hold close in your heart?
I bit my lip and carefully rolled the frozen bit of fudge into the hot coating. I dumped it on the wax paper. Adela dutifully dusted the top with sprinkles. We grinned at each other. One down and about 200 more to go.
There are about 20 people on my list this year to receive a little box of bon bons. They are for our neighbors and mailman and friends. Obviously, I am not helping anyone get through the holidays in a healthy manner, but I don’t do this only to give someone precious to me a smile. I do it because for a few hours I relive memories of my mother.
I can’t remember the first year she made them, but I remember the soft chocolate gleam against wax paper. I remember sneaking little bits of fudge until my stomach felt raw. I remember mom’s concentration and how enthusiastic she was to visit those neighbors and drop off those little packages.
Goodness, I miss her. I am not the only one for whom the holidays beckon back a thousand memories that make our heart sting. No matter how many Thanksgivings, Christmases, birthdays we make it through, it always feels strange and a little empty without our lost loved ones.
I turned and dumped another bit of fudge onto Micaela’s tray. She chuckled and smashed it between her chubby fingers. The sound of her laughter soothed that pain. One after another the bon bons were dipped and decorated. Adela snitched sprinkles. I shook my head and pretended not to see.
God, how thankful I am for movement. Movement helps me remember to breath. Movement helps life keep going forward despite the pain. Movement brings new memories and moments of love.
If I couldn’t move and do something, I might be lost in the pain instead of going forward into the love and memories.
It took a few days but the bon bons were made and packaged. They are meant to bless others, but they have already blessed me and mine more.
Do you find the holidays hard? If so, are there traditions you hold on to that help you move beyond the pain and relive good memories?
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"...and God was already there with me."