As I mentioned in the last post, I seem to have filled this blog site up as much as I can. to keep telling our story, I have set up another page. Be sure to check it out and subscribe.
New post up!
Life Giving Water
When we bought our house seven years ago, the house inspector said one of the first things he would do would be to have the plumbing done. The pipes were old, and the supply from the main much thinner than is currently standard. If we tried to use water from more than one water source, water pressure quickly dropped. But, it was manageable, and we did not have the finances available to move forward with such a project right after purchasing a home. We thought we would be able to save up for said project slowly.
Enter our youngest child, with his special needs and dietary restrictions, and seemingly endless hunger. Feeding just Daniel each week is quite the expense. I think Jarrod and I were able to have groceries for just the two of us for two weeks with the same amount spent on just Daniel in one week. (This is taking into account that money values have changed.) Saving up has not happened as much as we would have liked. We get our needs met and even some “wants.” But each time money would be saved, something else inevitably came up, and the money was used.
Sometime last year, the faucet on the tub started leaking. It wasn’t great, but just a constant drip. When we tried to repair it ourselves, we did not get it seated far enough back because of the high amount of corrosion. Instead of a constant drip, it was a continuous drizzle. Again, not horrible, just frustrating. About six months ago, the bathroom sink started to have a continual drizzle of hot water. Then a month ago, the hot water in the bathroom would not turn on, other than that drizzle. We had to face the fact that we needed to call a plumber. We found a great one that was willing to work with us, and they came out to begin working last week.
Somehow, there was a breakdown in communication between the lead and the crew. We were not supposed to be without water for more than a couple of hours at a time. We had plans and permission to go to the church and use the nursery during therapy and have access to the restrooms. But somehow, the crew did not realize that water was only supposed to be off for a couple of hours at a time. Jarrod ran out to talk to the plumbers the afternoon of their first day on the job when it looked like they were leaving. They had shut off the water at 10:30 that morning and had cut the lines right before getting in the vans around three that afternoon. There was no possibility of turning the water on again until after placing new water lines.
We could not stay home overnight with no access to water. Thankfully, we were able to go and stay at Jarrod’s parent’s house for a couple of nights; sweet friends blessed us by offering meals and offering to help with a hotel stay; we also received a gift card for the grocery store due to the sudden displacement. Daniel was even able to have therapy there for one of the days. Water was turned back on late Thursday afternoon, but we were then told they would need to return Monday to put the new lines in for the washing machine and install the new water heater. Over the weekend, we were once again thankful to have family inviting us to make ourselves at home in their space, to use what we needed when we needed. We were able to clean some laundry and use the kitchen to make supper while Jarrod completed some schoolwork. Monday, the plumbers installed the new water heater and hooked up the lines to the washing machine, but then they discovered something had messed up the fuse. It was locked in place, but no power was getting to the nice new water heater. We needed an electrician to come investigate and repair before we would have hot water. With the temperatures being abnormally cold here (as in, it snowed yesterday and dropped below freezing), that water without heat is just painful!
Once again, very thankful for my family. My aunt and grandma tag-teamed to get the kids and me over to my grandma’s house so we could shower and bathe yesterday. It felt wonderful to be under that hot water and get cleaned up.
Thankfully, today we had an electrician out, and within an hour, he was able to figure out the problem and repair it. We have hot water! I am so incredibly thankful.
If you have followed my blog for a while now, you may have read my post Living Water, and likely understand just how much water means to me, to our family. I think after this last week, we may appreciate water even more. Annika and I have already signed up to participate with the World Vision Global 6k for water fundraiser with Team Polaha Chautauqua. Still, I believe it has even more meaning for us now. Being able to help provide access to clean water to others who so desperately need it is something we are passionate about supporting. If you are interested in helping to provide clean water, there are a handful of great organizations out there. One I can right away recommend from first-hand experience is World Vision. You can sign up to participate in the 6k yourself, contribute to a participant, or support clean water. ( https://global6k.worldvision.org/index.cfm?fuseaction=donordrive.event&eventID=1421 or https://www.worldvision.org/our-work/clean-water) Another I can recommend is Her Arts In Action. You can find herartsinaction on both Facebook and Instagram, as well as by going to this link. http://www.herartsinaction.org/Connect
With the chaos of this last week, my first reaction was that sudden fear mindset. You know the kind, that knee jerk, in the flesh moment. But then the true reaction came—the reaction after you take a deep breath and remember who is in charge. “Trust in Him at all times, O people; Pour out your heart before Him; God is a refuge for us. Selah.” Psalms 62:8 NASB199
I was not prepared for this last week. But God was. It did not take Him by surprise, and He was our refuge. He was already paving the way. Jeremiah 29:13 NASB also says, “You will seek Me and find Me when you search for Me with all your heart.” I believe this goes deeper than just finding Him when you seek Him for a relationship. I think if you look for His hand in all of life’s circumstances, you will find those little blessings. Nuggets of goodness and provision nestled in the hard stuff. Keep looking up and walking forward, keep seeking Him and drink deep of the life-giving water that never runs dry. Be blessed, my friends, and filled with His hope and peace.
Since I seem to have used up the bulk of available space on this page, keep a look out and follow for more content on youngfamilyisanchoringin.wordpress.com. (See what I did there? Almost the same, just threw “is” in between family and anchoring.) As always, if you found this helpful, please feel free to like, comment and share on whatever social media platform you choose.
Waiting in Victory
Many of you know our story of infertility and God’s miracles in our lives, blessing us with our three amazing children. This last week I have been reflecting on just how great and good God is, how incredibly blessed we are. I can’t even imagine a world without these three in it now. This past Friday, my mom and I took Annika and Elijah to Dightman’s so they could pick out their prize from me after having worked so hard to get caught up on schoolwork. In addition to that, Annika had decided to bring her own money. She bought something for my mom, bought a book for both of her brothers, and a cup for me. Elijah also picked things out that he wanted to buy for others…he did not bring his money. He assumes my money as his own, it would seem. But he was very sure that his brother needed another ABC book, and his grandma must have a discipleship study book. He felt very grown-up, giving the cash for his purchase.
In addition to reflecting on how full and blessed our lives are, I have been reflecting on just how awesome it is that the God of all creation, the one outside of time, the Alpha and Omega takes the time to be intimately involved in our lives. He takes the time to confirm His Word, over and over. I love that.
Just a couple of weeks back, when Annika and I hopped on FaceTime with a friend to help us with Annika’s assignment, there was a specific verse that came to mind, and I couldn’t remember the reference. Annika had to write a paper based on the moment where Jesus is telling His disciples not to keep the children from Him. The topic of childlike faith came up, and I wanted to draw out this point to add food for thought. But since I couldn’t remember the exact reference, I was pouring through the concordance and coming up empty. (Side note: I was looking for the wrong keyword-I was looking for verses referring to children, not fathers.)The verse was not used, but it was still an excellent discussion. The passage I had been looking for is Luke 11:9-13. Do you want to guess what one of the pastors read this morning? Luke 11:9-13. Because that is how great God is, highlighting again how He cares for us.
This past Tuesday, I received an email that the long-awaited epileptic panel results for Daniel were available and that I needed to log in so I could see them. I went through the steps and saw the message indicating the new test results…and the folder was empty. I called the doctor’s office to find out what had happened. I am sure the answers are negative, but it would be nice to have that confirmation. The office said they see that they have received the results, but the doctor has not yet reviewed and released them. The receptionist said I should hear soon. I waited all day for that call; it never came. I broke down and called back the next day to double-check. Daniels’s doctor was not in, so the results were still waiting in her inbox. Thursday and Friday both came and went with no answers. Here is where my mind is. I am pretty sure the results will be negative. I think that is a good thing? I don’t want him to have an epileptic disorder. For it to be entirely negative would indicate that the seizure episodes are nonepileptic, meaning the seizures would be a side effect of another as of yet undiagnosed issue. It can make the mind wander and stutter all over, going from one side of the pendulum to the other.
In addition to receiving the information that the results are there and I still can’t see them, we have continued to strive to catch up on the homeschooling we fell behind on. I have continued to do my morning Bible studies with some beautiful friends, as well as do the reading for the Thursday night anxiety support group that meets on zoom. This past week, we were in chapter 7 of Don’t Give the Enemy a Seat at Your Table by Louie Giglio, and two sections stood out significantly. I loved the way Giglio worded these thoughts. Giglio writes, “On D-Day Plus 1, you’ll need to get your mind around this truth: even though the war is over, some of your toughest fighting is still to come. Yet because the beachhead has been established, you will always fight from the place of overall victory. In your spiritual life, Jesus gives you the nikos. He gives you His accomplished work on the cross, the defeat of sin. He has established a beachhead of victory so you can move forward. From this foundation of victory, you now fight. That’s your mindset to prayerfully embrace today.” A couple of pages later, Giglio adds, “God, help me take captive every thought to make it obedient to Christ. It sounds paradoxical, but it isn’t. These two truths work together as one: Christ does all the work, yet you need to lean into that work by prayer and decisiveness. You must agree with Jesus. In Christ, you have been given the opportunity because of the beachhead of victory to move forward, fighting in power. The power comes from Christ. The victory comes from Christ. Yet you must agree with Christ so you don’t live in the double-barreled message of defeat. Nobody else is going to take your thoughts captive on your behalf.”
No, I was not promised an easy road. Not as a human on this planet, not as a believer in Christ, not as a wife, and for sure not as a mother. But I am promised victory. No, the power to step out and face each challenge does not come from me. It comes from God, who came to dwell in me the moment I first believed. But I have to take part in that. I have to lean in through prayer, feeding on His Word, and being renewed day by day by a fresh touch of His Spirit. This morning, while reading through Jeremiah, I came across these verses that I always have to pause and chew on. The magnitude of God’s grace and love, the promise of how He will grow and nourish us when we cling to Him.
“Blessed is the man who trusts in the Lord And whose trust is the Lord. For he will be like a tree planted by the water, That extends its roots by a stream And will not fear when the heat comes; But its leaves will be green, And it will not be anxious in a year of drought Nor cease to yield fruit.” Jeremiah 17:7-8 NASB1995
“Heal me, O Lord, and I will be healed; Save me and I will be saved, For You are my praise.” Jeremiah 17:14 NASB1995
If you are facing a battle, where are you choosing to move from? I pray that you are emboldened to move from a place of victory, leaning into Jesus. praying you are filled with Hope and peace in Jesus. As always, Feel free to like, comment and share.
Frustrated…But Filled with Peace
It had started as a fantastic Tuesday. Daniel worked with his therapist, being a champ as he counted out the requested number of items and worked on shapes and sorting items. Elijah was already busy working on his reading, and Annika had already worked through most subjects she could do alone. I had gone to the kitchen to get started on breakfast clean-up and lunch prep. That’s when it all went south.
Daniel saw that I was in the kitchen, and he decided he needed to run in and stand right under my elbow as I washed dishes. Since the handle on the gate that keeps the dogs in the kitchen has broken, he now knows how to open it. But when Daniel opens the gate and runs in, he leaves it open, letting the dogs into the living room to roam around. Of course, after he does that, he tries to avoid having them near him. We were finally able to corral them, and I started on the dishes once more.
I think I managed to wash a small handful of dishes before Elijah asked for help. He had moved on to his math. It was just a review; the first three questions were just using addition. Something he has known how to do for quite some time…but he started to struggle. He had it stuck in his mind to do it his way that would not work. I wrote down the problem for him again, and he got mad, yelled, and told me, “you are wrong, mommy!” Okay, he didn’t simply tell me that. He yelled it at me. It took an hour and a half to get through three problems. After he finally calmed down enough to listen to me and focus, he was able to get the more complicated problem (it involved multiplying and adding together two separate equations and then figuring out if they were equal or if one was greater than the other) in just over two minutes.
During that hour and a half of Daniel coming to bump my side, letting the dogs out, and Elijah yelling at me, refusing to work, I felt my frustration rise. But it did not end there. In most things, I can provide Annika instruction or more she can read it and figure out right away what to do. She is very self-motivated and takes ownership of her education. The one area of struggle is truly language arts. She has a hard time understanding what has been asked of her, and while I love language arts, when I see the instructions, it is obvious to me, and I can’t figure out too many different ways to explain it. So as she continued to grow frustrated, my frustration mounted yet again. Not because I was frustrated with her, but because I was frustrated with my inability to figure out how to help her understand.
There she was, crying because she could not understand how to explain what a verse meant to her. She had it written down on her story map, but rewording it into a sentence did not click for her. Part of the issue, Daniel’s therapist helped me realize, is that she is very straightforward and literal. She has a creative imagination, but it doesn’t cross over in all areas. Last week she had a tough time personifying animals and inanimate objects. To her, that just doesn’t make sense.
But there I was, with her in tears saying she didn’t know what to do and me going through the instructions again trying to find a different way to phrase it, and I was stuck in my own loop. “I don’t know how else..I…I can’t figure out any other way to explain it… We need to take a break from this for the day.”
My frustration was definitely up there, and my eye even felt my eye twitching. I could feel stress climbing, but God kept me calm. I had started my day with my morning devotions, spending time in the different Bible studies I am doing with friends in the Bible app on my phone. Isaiah 26:3 NASB1995 says, “The steadfast of mind You will keep in perfect peace, Because he trusts in You.” Another translation puts it this way. “You keep him in perfect peace whose mind is stayed on you, because he trusts in you.”(Isaiah 26:3 ESV)I found that to be true for me because, amid heightened frustration, I felt His perfect Presence keeping my flesh in check.
Then as Daniel’s therapist left, she threw out a “Well, happy Tuesday!” It was the perfect moment. God used her to speak the ideal thing to diffuse the tension. Both at the irony that these moments were anything but happy and the reminder that in Jesus, it truly is still a happy Tuesday. The laugh, even brief, made me feel so much lighter.
I managed to get lunch going and turned to see Annika still crying, her face turned away from me in the kitchen. When I went up to her, put my arm around her, and told her I was sorry she was having a rough day, she responded by telling me it wasn’t the schoolwork that made her cry. She said it made her feel bad when I laughed at the Happy Tuesday comment. That opened the door to a very healthy discussion. I explained that I was frustrated, too, and I would much rather laugh to feel better than cry to let it out. I explained that just as she was frustrated having an assignment that she knew was her job to do, and she just could not figure it out, I was frustrated, too. My job was to help her and her brother to learn, but I was struggling to figure out a way that would make sense to her and struggling to find a way for Elijah to connect things cognitively. So as their frustration grew, so did mine. But I also needed an outlet, just like they do. I am responsible for my feelings and behaviors, not them. I couldn’t yell at them or take it out on them; that would be wrong. I also didn’t want to cry. Laughter let that tension out. I wasn’t laughing at her, I had laughed at the ironic moment, and it made me feel better. That cleared up so much for her and helped our relationship grow.
Later that night, we received the confirmation of the plans for the youth group get-together this coming weekend. Annika had been talking about it all week. The group is going putt-putt golfing, and Annika has never been. On top of that, the same gal that gave her a ride last month will also take her this time. Annika enjoys her company, so her face lit up when I let her know. The blessings don’t end there, though. I told a handful of my Bible study friends, and one of them just right away sent money for her youth group event. She said that it touched her to do something special for Annika because she understands Annika’s needs to connect to others and get out and do something that is not about therapy and her brothers’ needs. Above and beyond. Today, we got an invite for Annika to join with some friends with our church family at Hope in a few weeks. She is looking forward to that, as well.
That is what it’s all about. The Body of Christ is not a clique or gang. Kingdom living is about loving God and loving people. It’s about having healthy dialogue and being authentic. It’s taking responsibility for our actions, being accountable, having grace, having a servant’s heart. It’s about giving when you can and learning to receive. It is about sharing joy and sorrow, building one another up. So thankful for my family, my church family ( all of them! Just because I may not be there as often in person does not mean I don’t hold each person in my heart,) thankful for my Polaha Chautauqua Family, and my anxiety support group/book club family.
I pray that as you read this, you can take a moment and breathe in deeply into the peace that is found in Jesus. Over the last two years, anxiety and depression have climbed to unbelievable heights for people of all ages and walks of life. We are not promised an easy life, but we are promised that if we surrender to Jesus, we are never alone. Praying you find peace and are filled with His Hope. As always, feel free to like, comment or share across social media.
Morsels of Goodness in the Madness
As I shared in My Pillars Set, January and February are filled with many memories. I know I have shared recently about Daniel’s third substantial regression., but I am not sure if I shared just how significant that was or the impact that had. I know I briefly touched on the VEEG being difficult and inconclusive, but I didn’t feel I should go into too much detail in that last post because I did not want the focus to be on the struggle but on the fact that God is good even in that struggle.
I still don’t want to take the focus off the positives; I want to highlight them even more. But sometimes light shines more brightly when you see the darkness get a little thicker. I honestly do believe God is at work healing Daniel, but I also think God is using our story to touch others. As one friend put it so succinctly- “That the works of God might be displayed within him. Boom.” So, to continue shining a light on God’s glory, allow me to elaborate with a little more detail on Daniel’s regression and that 24-hour video EEG.
Just watching Daniel daily, some may think Daniel has just stayed consistently at his current level. Or, they may believe at first-as we did- that he had just regressed following covid and that he would regain his skills once the lingering effects left him. Both of those are inaccurate, though. We started looking through videos and combing through the data collected over the last year, and we came to a startling realization. Daniel had made so much progress to drop the “non-verbal” from his diagnosis towards the beginning of 2021. He discussed what he saw when we were reading books, he could ask and answer simple questions, and he was verbally engaging with the shows he was watching.
Then we started noticing over the summer that he was becoming quiet, withdrawing more. At first, we thought he was simply acquiring new skills and would return to being a chatterbox once he learned what he was working on mastering. After he recovered from covid, the regression was very pronounced, and at first, we were writing it off as that. Kids usually regress during illness; it is not unexpected. But then we dug through the data and realized no, it only stood out because there was a gap in therapy. Not only could he no longer say many of the things he used to, but his receptive language skills had also declined. Going over the graphs and notes, we could piece together a gradual decline in all of his skills and abilities. Skills he had mastered long ago he could no longer figure out. It felt like a sucker punch to the gut.
The 24-hour video EEG. No results, other than confirmation that he has had tics for the last year. They were unable to capture any seizure activity on the EEG. But we did have a lack of sleep and meltdowns. He cried and screamed for the first hour until the EEG leads were hooked up. He wanted to go. Once he was all hooked up, he was okay as long as he was sitting in my lap, watching videos, and holding a ball. When he found out it was bedtime and we were not going home? Another meltdown, crying, and tears. He stayed up way later than he should have. Then he ended up getting tangled and wrapped in the leads from the heart monitor. He had been wrapped so tight in the leads that they ended up lifting him from the bed. The only way to untangle him was to sit him up, unplug the chord, and unwrap him. This happened around 4 in the morning. Of course, after that, there was no getting him back to sleep. Once again, the only way to keep him happy was to have him in my lap, watching videos and holding the ball. Around 10 am, the doctor came and said she had already notified the EEG team, and a technician would come to remove all the leads soon. Once she left, Daniel was sure that meant we could go right away. For the next 45 minutes, he was crying, screaming, and vaulting himself onto the floor. I can’t begin to tell you how relieved we were to get him in the car. He was so tired, and my sweet baby just wanted snuggles for the rest of the day.
If you read my last post, His Timing, God’s timing is perfect. The day that I first started this post was day one for one of the book clubs I participate in, and we are going to be discussing Don’t Give The Enemy A Seat At Your Table: It’s Time To Win The Battle Of Your Mind by Louie Giglio. As I read through the first chapter and took a closer look at Psalm 23, I was reminded again of how good God is and how He wastes nothing. In Giglio’s book, he says this. “The landslide of power was the realization that the King of the universe is inviting you and me to sit with Him at His table. Those nine words were memorable, but even more, they were packed with proven power. The story they conveyed was freeing and had instant application. It’s the story of a Good Shepherd who sees you and walks with you through the valley. It’s about God setting a table of nourishment and refreshment in the midst of trouble.”
Those words about a table of nourishment amid trouble reverberated through my mind. That was a big part of what I had shared in my last post. God hasn’t removed the difficulties from our path, but He has brought goodness and blessings into our lives.
Through Jarrod’s overtime pay, holiday bonus, and the generosity of some of our relatives, we were able to get Daniel an iPad and Proloquo2go. We would not have been able to afford this without the blessing of that bonus and Christmas gift. But now we have that resource, and we can teach Daniel how to use it to communicate. Once he is proficient at navigating through it, there will no longer be frustrating times of him being unable to find the right words to say or leaving us struggling to understand his words.
February 3rd was also filled with reminders of God’s goodness over us in the past, as well. February 3rd marked the 10th anniversary of Elijah’s first surgery. We watched Elijah needing a vent to breathe while he recovered, an IV for fluids and medication, and a tube in his stomach to eat. Now he is a thriving, active boy who loves to run around and pretend he is a quarterback when taking a break from his schoolwork.
I had another sweet memory pop up on that same day of something so special from nearly two years ago. At the beginning of the lockdown and pandemic, Daniel regressed again and showed little interest in watching or listening to anything. But as I was scrolling through social media and listening to Paul Greene’s instastories, something snagged Daniels’s attention. Paul puttered around his kitchen, making fun little songs to narrate his activities. Something so simple yet so significant in this detail-it captivated Daniel. He had me replay those short video clips over and over; it brought tears to my eyes to see his interest. I sent a quick note to Paul to let him know how special that was. He replied by sending a personalized audio clip to Daniel, singing a particular song just for him. It made his day! He listened to it repeatedly until it grayed out and was no longer available. I did not immediately share this with everyone because, in reality, I am in some ways protective of people in the spotlight who go out of their way to do something kind for my family or me. I don’t want them bombarded with messages requesting similar treatment or favors. But I asked if I could share this story because it came up again on February 3rd. That was also the day we received the wearable heart monitor for Daniel. He held still for us so we could put it on, but he right away started to mess with it and pull it off. Somehow, while swiping out of a Bible study group chat, I managed to swipe into that thread with Paul Greene. I think that “somehow” was a God-incidence because that audio clip was available to listen to again. The moment Daniel heard it, he froze and was captivated again. He left the monitor alone! That audio clip kept him from messing with the monitor for two days, which got him used to it for two whole weeks before he finally got tired of it.
As a fun bonus, when I asked for permission to share this story, Paul even offered to do a mini-email interview for the blog…so be looking for that in an upcoming post. But for now, I want to remind you to lift your eyes. Your difficulties may still be in front of you, but if you trust in Christ, He is the Good Shepherd that makes a way where there seems to be no way. He calms the seas. He walks you through the shadow of death and prepares a feast for you in the midst of it.
I pray that as you read this, you are refreshed and encouraged. No matter what you face, God is bigger. As always, feel free to like, comment and share.
His Timing
What a month January was. We are already one-twelfth of the way through the year. Crazy when you stop to think about it that way. January brought some beautiful reminders of our past with Elijah, Elijah’s birthday, my birthday, and some challenges for Daniel. It also brought with it some changes for our family as a whole.
The day before my birthday, Daniel had another seizure-like episode. It drained him of color and had him completely wiped out and lethargic, quiet, and with a decreased appetite through much of the day. But he still cooperated for therapy and had a good night. On my birthday, we headed out to my mom’s for a fun time of fellowship and brunch. We then headed home to give Daniel a break to recharge. We ended the day with a trip to Titlow. God caused the fog to lift and the sun to shine, providing an opportunity to enjoy a beautiful walk through the woods and see the sun as it set on the beach. It was amazing to go as a family to one of my favorite places from childhood.
Sunday morning, Daniel had yet another episode. He drained of color and bent over, laying himself on the ground first thing in the morning. It took quite some time to get him dressed and downstairs. He didn’t want his oatmeal, requesting some cereal instead. Thankfully, he did finish that, but he still looked so skinny. He had refused a shirt, and you could see his entire ribcage and how sunk in his abdomen appeared. I kept him home while Jarrod and the older kids checked out a new church. (Side note-we love the church family we have been with for the last four years and still desire to be a part of it. But as our homeschooled kids are growing, they need to be around peers their age regularly. Especially Annika, as she grows into a young woman. We also miss attending church as a family and have been unable to do so for years. So our pastor’s wife recommended one to us.) Daniel spent most of Sunday just curled in my arms, resting.
Monday morning dawned, and once again, Daniel had another episode. This time with Jarrod and his therapist. He was doing well, working with her and identifying shapes. Suddenly, he spaced off, became pale, crossed his eyes, started slurring his speech and saying non-words, and got down on the floor. His therapist got down next to him, and he just went limp against her. When I walked in, Jarrod and the therapist explained what happened; I grabbed the pulse oximeter to check on his O2 saturation levels since he still looked a bit pale. Thankfully, his oxygen was fine, but his pulse was relatively low. It would have been great if he already had the ILR device, but we are sadly still waiting on that.
With three episodes happening just before his 24 hour EEG, I was hopeful that we would receive answers. Unfortunately, we didn’t. The only thing confirmed is that he does, indeed, have a tic disorder. The positive is that he is not having daily seizures. The bad news is everything is still inconclusive. The neurologist said she believes the episodes were a specific type of seizure, but because of the interrupted night of low-quality sleep, I don’t remember what she said. She did increase his medication, but she still couldn’t see anything on EEG, no official diagnosis. She also ordered another comprehensive blood panel and a blood test to check for epileptic disorders. Because of his third significant regression, she believes it is time for another MRI. The cardiologist touched base with us and said he concurs with the neurologist that the episodes were seizures. But we still don’t know if he may have an arrhythmia. Insurance is putting up roadblocks, though, so we need first to attempt a Holter monitor before moving forward with the ILR. So those are our next steps.
Have you ever stopped to consider how flawless God’s timing is? From our perspective, sometimes things seem to go so slowly, especially during hard times, that we want to see an end. But 2 Peter 3:8-9 reminds us He is not slow in keeping His promises, as some would think He is, and that His time is different than ours. He is beyond time; He created it. I don’t know the big plan, but I know who does. I know God did not cause any of the challenging circumstances we face. The Bible is clear on that. The enemy comes to steal, kill and destroy. Jesus came so we may have restored abundant life. So we press in and pray for answers, for healing and results right now. We know that we wage a spiritual battle, with things happening in the unseen, and sometimes it may take a while to receive that answer, just as Daniel discovered. (Daniel 10:12-14) But I also know God may be allowing this. All you have to do is flip through the Bible and see tale after tale of men going through struggles, not that God created, but God allowed to bring about good. We can look at Joseph, sold into slavery and eventually became second in command of Egypt, saving the known world. We can look at Job, who God allowed satan to torment.
Job even makes it very clear-satan was only allowed to do what God allowed. It would be easy to brush this aside because it is hard to understand, but we must take the Word in its entirety, trusting God that He is good, trustworthy and that His ways are not our ways. I love how C.S. Lewis has Mr. Beaver put it in The Lion, The Witch and The Wardrobe, “‘Safe?’ Said Mr. Beaver; ‘don’t you hear what Mrs. Beaver tells you? Who said anything about safe? ‘Course he isn’t safe. But He’s good. He’s the King, I tell you.’
We can look at the man born blind, whom Jesus healed-as an adult. That man lived his whole life up until then blind. The disciples ask Jesus who sinned to cause him to be born blind, and Jesus answers, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him” (John 9:3ESV). We know how and why God allowed these men to go through the things they did because we see how their story ends. But we don’t get to see the end of our story when we are in the middle of it. But we do get to trust God, trust that He is good and in control and at work. It is true that our enemy, the devil is like a prowling lion (1 Peter 5:8), but God is so much bigger and has full, final authority. His kingdom cannot be shaken, for “our God is a consuming fire.” (Hebrews 12:29 ESV)
While walking through the hard things, yes, it can test your limits. You can feel beaten down and discouraged. But if you trust Jesus with your life, choose to follow Him, seek after His ways, He will sustain you. He will lift your face. He will surround you with blessings and answer desires you hadn’t even figured out how to express.
The harsh realities of life have not been removed from our path. We were never promised an easy life, the rain falls on the just and the unjust alike (Matthew 5:45) But God meets us in the chaos. He hasn’t left us or forsaken us. Things may still be dark and scary, but God sees the big picture, and He is still in control and in our midst, guiding us with His strong right hand. He is blessing us, even in the middle of the darkness. In the last couple of weeks, we were overwhelmed by love and support from so many from all over! I have had the honor and joy to “meet” in Bible study every day for the last several months with people not only in different states, different countries, but even different continents! I have the joy of joining a book club led by a sweet sister, guiding us to cast our fears to the Lord, and I had the sweet pleasure of seeing my girl with her new friends in the youth group. I heard that the youth leaders commented that she fit right in as if she had always been a part of their group.
I pray that as you face your scary path, you will lean into Jesus and seek His face in whatever your circumstance. You can trust Him. He is good, and He will never leave you. I pray that as you trust in Him, the Prince of perfect peace will fill you with His joy, even in your darkest hours. If this post has encouraged you, please feel free to like, comment and share.
My Pillars Set
January and February are filled with memories and reminders for me. Not only of Elijah’s birth, but the events that followed, as well. Having to go home without him, his NICU stay, all the tests, treatments, and meetings with the staff. My social media feed reminds me of those early days, sometimes even things I had subconsciously forgotten. Even more than that, it is filled with reminders of God’s promises and provision through that entire time. These are my pillars, my monuments set up as a reminder to myself to tell my children and anyone willing to hear about what great things God has done.
How appropriate that I also started a read of the Bible in a year plan with a couple of friends, and we have been in Genesis where the Bible first starts discussing setting these pillars up. On the tenth anniversary of the day Elijah was taken to the NICU,this is what I read. “Then God went up from him in the place where He had spoken with him. Jacob set up a pillar in the place where He had spoken with him, a pillar of stone, and he poured out a drink offering on it; he also poured oil on it.” Genesis 35:13-14 NASB1995
I remember so vividly the moment we found out Elijah had been taken to the NICU. It was the middle of the night, and I was recovering from a cesarean, yet it was instinct that the very first thing Jarrod and I were to do was get on our knees and pray. Pray to the God who spoke to our hearts about this promised child. He had led us to name this boy “God is salvation.” God knew. God wasn’t surprised. But we were surprised, we were shaken, and we were scared. I remember the days that followed, struggling so much to provide milk for my baby, even though he was not awake to eat it. I remember the frustrated look on Annika’s face when we came home without her baby brother. I remember just going through all the motions, having to rely completely on God to get me through it. I remember meeting with the geneticist and hearing the confirmation that he had this rare genetic condition, and I remember my voice shaking, asking her questions when that settled in my core. I remember living on faith but also being numb. I couldn’t deal with the pain, because I wouldn’t give myself the space to do so. I didn’t see how I could. I had a husband and toddler I needed to stay strong for. But in those quiet moments in my heart, I also remember crying out to God my concerns that my baby would not bond with me the same way Annika had. If he slept all the time, would he know my voice? If he were separated from me for so long, would he understand how much I loved him?
I also remember the beautiful things. I remember the nurses who went out of their way to accommodate us as much as possible, to give us as much time holding our boy as we could. I remember my mother in law calling out of work to stay with us an additional week to help out, to give me rides to the hospital and take care of Annika. I remember the church family and friends who drove great distances to bring us meals, to watch Annika, and take me to the hospital while Jarrod was working so I could see Elijah and deliver milk. I remember God holding me up and continuing to speak reassurance to my heart when I felt broken. I remember the years that followed with all the amazing therapists and teachers who fed into Elijah’s life and helped him grow.
Each memory that pops up delivers me right back to those moments. That intimacy with Jesus, when it was just me and Him. “Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand.’” Isaiah 41:10 NASB1995
These reminders have come at such a wonderful time. Because I am tired. My faith has not wavered, but I am drained and sometimes I find it a struggle. Walking this path with Daniel has been a long journey looking for answers and the best way to help him. After realizing he had a third regression and genetic tests have not yet yielded usable answers, watching more symptoms continue to develop is truly exhausting. I know I don’t have the strength in myself, it only comes from God.
Being a full-time caretaker to not one, but two special needs kiddos is beyond rewarding. Being able to homeschool all three fills me with more joy than I can say. Watching the world come together and make sense in their brains, hearing them figure things out for themselves is amazing. But sometimes in the day-to-day pouring out into my children, doing my best to meet their needs, I feel myself becoming dry. I feel emotionally and physically wrung out. These memories bring me back to that place where I can just sit in awe at the fulfillment of God’s Word and feel myself being renewed. It gets me back on my feet with the energy to put that next foot forward.
If you are experiencing a season of chaos, change, or confusion, look back at your pillars. Look at the places God brought you from, the promises He gave you. His Word does not return void. I pray you are encouraged and renewed with the Hope and Joy found in Jesus. As always, feel free to like, comment or share.
Fresh Steps
Over the last few days, I was reminded of the goals I set for myself last year. I started the first few months going great towards those goals, but then life was derailed. At first, I found myself getting a little frustrated for not having followed through on everything, for not attaining those goals. I could continue to feel down on myself about that, but instead, I am reflecting on all the good things that God has done in our lives. When doing my devotions, my app gave me a “snapshot” of what I had accomplished over the last year. Added to that, watching how well my kids have progressed spiritually, emotionally, academically and how we have all grown together as a family has me realizing that while the goals I may have set for myself did not all get accomplished, the things that matter most were done.
Last night was a first for Elijah. He wanted so badly to stay up until midnight and ring in the New Year. I decided to let him try again this year, but I wasn’t sure he would make it all the way. Last year he was out by 10pm. But this time he stayed up watching movies, sometimes moving around on his feet to keep himself alert. When midnight came and he heard the fireworks and was able to have that little bit of sparkling grape juice, he was so excited!
I also decided that I would start making realistic goals for myself and my health. I have tried different exercise plans over the last few years, but I usually run into roadblocks. First with covid shutting the gyms down, then with trying to do in-home workout plans only to discover with our limited space, the only time I can effectively, consistently do a workout is after the kids are in bed for the night. The only problem with that is I end up being too exhausted to follow through. So I decided to sign up with Run Across America. As a bonus, when donating to Feeding America through them, the donation is matched. (I created a team with the code “chautauqua” for anyone who may want to join in.) I decided that I wanted to start this New Year with a fresh start, and for me, that meant starting to take fresh steps and walk every day to reach my goal. Annika has decided she wanted to come as well. So we went this morning, careful and slow on the ice, and managed to get in a little over a half-mile.
This year, I want to make a point of regularly reflecting on how God has blessed me, to share how grateful I am way more than I allow a complaint to leave my mouth. I want to keep Romans 8:28 ESV always in the back of my mind. “And we know that for those who love God all things work together for good, for those who are called according to his purpose.“I want to keep growing into who God has called me to be. I want to be the best wife and mother possible, to teach my kids to grow into who God has created them to be. (Proverbs 22:6) I want to be somebody who encourages others to continue taking steps towards fulfilling their calling (Hebrews 3:13), who reminds people that God is our stronghold (Nahum 1:7) and that the Lord is good. (Psalm 34:8)
What are your goals for this year? No matter what they are, I pray that this New Year finds you filled with renewed joy, peace, and hope. As always, feel free to like, comment, and share.
Snowy Days
Snow. It is so beautiful, each snowflake unique in its design. It muffles the sounds of a busy world and brings a soft hush. Snow tends to slow things down, especially when you live in an area like I do, where more than a dusting doesn’t often happen, and thus we aren’t as prepared for it. The western side of the state of Washington is ill-prepared for large amounts of snow, we don’t have the plows that other areas do. Snow days happen for lesser amounts of snow than they would in other areas. But again, that is because we don’t get snow that often.
Thankfully, the snow did not prevent us from visiting with family this last week. I, unfortunately, did not get many pictures since Daniel was using my phone to watch videos; I was, however, able to get one adorable video of Daniel using his cousin’s new slide. I also captured these sweet moments of the kids using the quilt my grandma made for Daniel.
The snow, while beautiful, did cause a few snags on our week. For starters, food! I had run out of a few things by Christmas Eve but figured it would be okay. Christmas ended up using even more of the food we had on hand than I anticipated. I had not realized how low we had been on certain items until it was too late. Sunday morning I placed an order bright and early so that we would get the order early in the day. We had used the last of the melatonin the night before, we were out of protein choices, cereal, bread, and had even used up all of the fruit and salad fixings. Thankfully we had had leftovers to eat up until that point, but we would need our groceries soon! Well, the afternoon came. Groceries were delayed because of snow. No food in the cupboards or fridge meant nothing to feed the family for supper. There ended up being a brief window in which a meal was able to be delivered for which we were incredibly grateful. We still had to face another night with no groceries, and unfortunately, no melatonin! Daniel had a very rough night with little sleep which sadly meant a long night for Annika, as well, since he slept in her bed. Thankfully, the next day the groceries and melatonin arrived, and we stocked up to make sure we wouldn’t run out of anything if and when the snow prevents deliveries again. This seems wise, as it snowed again last night and has already caused delays on many things. It has even caused my pharmacy to be closed.
The second thing the snow has thrown off course is Daniel’s therapy. The road conditions and weather caused the therapy company to cancel all morning sessions this week, other than one day that had a late start. Instead of Daniel having fifteen hours of therapy this week, he has had an hour and a half. That is not a complaint, nor do I think people should drive in unsafe conditions. It is just a statement of fact that it has thrown off our routine and schedule this week. Daniel did have fun for the short amount of time he had therapy, though!
The snow did cause one more significant situation this last week. The pipes got so cold two nights ago, that I ended up getting in the shower day before yesterday thinking it would be nice and HOT… I had turned it on for a few minutes before I was ready to get in to allow for the water to warm up, as per my usual routine. I normally check the water before getting in, but I assumed it would have been running long enough to warm up, but instead was very shocked at the icy cold water that washed over my body. I tried to give it a few minutes to warm up, but it never even got up to room temperature. I was already drenched, so I ended up taking a very cold shower that felt like it put my body into shock. My sinuses for sure did not appreciate it. It was like an unintentional polar plunge-something I do not have the desire to ever participate in. About two hours later, I checked the water. The water at that point was of course running nice and hot. Our best guess is that the water in the pipes was just so cold it took a while for the hot water to warm them up enough. Either way, I am grateful that there was nothing seriously wrong. That said, no matter how many blankets, sweatshirts, and fluffy socks I piled on, I could not get rid of the chill. It took finally making another few cups of coffee and drinking those to heat me back up and push the chill away.
That experience with the icy water and needing the hot drink to warm me back up made me think of how true that can be in our spiritual walk. For somebody who doesn’t know Jesus, or for the believer going through one shock after another, no matter how many things we try to do for ourselves, it isn’t going to address the real need and bring the change we need. Left to our own devices, our self helps, or even those trying to lend a hand- if we don’t have the touch from Jesus bringing restoration, we may still ache from the icy fingers of fear and shock. Ezekiel 36:26 ESV says “And I will give you a new heart, and a new spirit I will put within you. And I will remove the heart of stone from your flesh and give you a heart of flesh.” We are also reminded in Isaiah 41:10 ESV “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.”
If you are struggling in fear or struggling with all that is being thrown at you right now, whether you are a believer or not, ask Jesus for that fresh touch. Be renewed and restored from the inside out, and filled afresh with His Hope and Joy. As always, feel free to like, comment or share.
The Unexpected Life
We always have fun when Jarrod has some time off from work, and this last week was no exception. Jarrod used some vacation time and had a four-day weekend. Daniel enjoyed the time getting to roughhouse with him, Elijah enjoyed watching football and talking about the games with him, Annika had fun getting to start going through Lord of the Rings again. Jarrod and I had a date night, enjoyed dessert, and watched Life Unexpected. Of course, by the first episode of season two, he had pretty much decided on exactly how the series ends. I have to keep as much of a poker face on as I can because he claims he can read me like a book and he hates spoilers. Sunday night the kids and I listened to the Chautauqua Christmas special featuring several hallmark channel leading stars singing or reading Christmas classics. (If you want to see it for yourself, there is a video available on the internet, a simple browser search will pull it up.) Monday night we headed out to enjoy our yearly trip through Fantasy Lights, and then Jarrod and I ended our night by watching It’s a Wonderful Life.
Life is full of expectations. We have expectations everywhere we go, and in everything we do, whether we realize or acknowledge that or not. When those expectations are not met-because let’s face it, life is messy and full of surprising curveballs-we can become disillusioned, frustrated, confused, or bitter. But if we are following Jesus, we can trust Him in His Word. We can trust He is Who He says He is.
He is the Alpha and Omega, the I Am, the God Who Sees, God Who Provides, the Lamb of God, Savior, Prince of Peace. When we recognize that the God of all creation sees us, knows us intimately, and loves us completely knows the entire picture, it becomes easier to let go of those expectations. It makes it easier to get back up after those surprises come.
Just because things might take me by surprise, God is not caught unaware. “Thus says the Lord, the King of Israel and his Redeemer, the Lord of hosts: ‘I am the first and I am the last, And there is no God besides Me.” Isaiah 44:6 NASB1995 “Then she called the name of the Lord who spoke to her, “You are a God who sees”; for she said, “Have I even remained alive here after seeing Him?” Genesis 16:13 NASB1995
I also love the reminder that His ways are not our ways, and He has a completely different way of seeing time than our narrow perspective will allow. His timing is perfect, flawless. We may not get where we want to when we want to, but He may have a better plan involved than the one we have set. Case in point, earlier this week Annika and I went with my mom for a trip to the mall for some last-minute shopping, and of course, a Starbucks run. Annika requested we start with the mall and get Starbucks while we shopped. When we pulled into the parking lot, we were a little confused at how empty it was. We then realized we were fifteen minutes too early. We rearranged our itinerary and drove to a nearby Starbucks, but we missed our turn more than once. I believe God used everything that happened for His glory, though. When we pulled up, a young woman was sitting at a table outside, clearly homeless. When we went inside, my mom ordered an extra drink and muffin and took it outside to who we will call Miss T, with respect for her privacy. Miss T needed that moment to feel valued, the connection to another human who saw her and was willing to reach out. Miss T had aged out of the foster care system, fallen between the cracks, and found herself alone with nowhere to go. The God Who Sees saw her. He saw where she was at, and the brokenness in her heart. My mom was able to hear her story, pray with her, be God’s hand of love for her at that moment. As Annika and I stayed inside and enjoyed our treats, we prayed for her and discussed that while this was not our original plan, it may have very well been God’s plan to use our time like that.
Later that day, I found myself once again rejoicing that He is the Alpha and Omega. I was surprised to hear back from the genetic counselor that afternoon, as she had said it would be after the New Year. They received the results. The good news is that only one incidental code was flagged in the areas they looked at, so nothing diagnostic. Bad news, nothing diagnostic doesn’t mean nothing is there, it just means they have to keep looking. The geneticist and the neurologist both believe there is something we just haven’t yet figured out. So at this point, it means more waiting. More waiting for different symptoms so there is more information pointing to different genes to be evaluated. So now we wait, thanking God that He was there before this, He is with us in the wait, and He is on the other side waiting in victory.
Trusting and rejoicing does not mean my heart isn’t torn at a longer wait, nor does it make it any less draining and hard. I don’t want to give the impression that I somehow have it all together and am unfazed by this, because I am not. My heart hurts, but I realize that God cares so much more, and He is trustworthy. Beyond that, I know that ultimately these beautiful children of mine belong to God. As I shared in my Bible study this morning, part of our devotional reaffirmed in my heart just how great God is. Even though we still don’t know, God does. This was the last part of the prayer in our study today, “Holy Spirit, help me guide other people who are far from you to draw near and worship Jesus.” (From Advent The Journey to Christmas, A Church of the Highlands Devotional)
That was like a confirmation to my heart. From the time Annika was first born, I viewed her as a gift God was letting me raise, but ultimately, she was His. Much like Hannah with Samuel, I had poured my heart out to God in my infertility… He heard my cry and opened my womb, and sent somebody to tell us that God had that new beginning for us. That prayer and mindset continued with the boys, as well. Prayers that God would protect us, give us hope, but understand we are His and that He uses us as He wills.
A couple of months ago, somebody mentioned to me that he believed I was going to have a great story to share, a testimony about what God has done. I fully believe that to be true. I never imagined more than a few people outside of the family would see our blog… yet, because Kris Polaha had us on the Chautauqua and talked about our blog, more people have found it. I have had a number of people I didn’t yet know send messages because they saw us on the Chautauqua and came across our blog, and it was an encouragement to them. I fully trust that God is capable and desires to heal Daniel, but I know I don’t see the big picture. I know His timing is perfect, but I also know eternity is worth so much more than the temporary things we go through on this Earth, and I don’t know who else may be encouraged on our journey.
We all have a journey we are on. We all have expectations and surprises. We don’t have to go on that journey alone. It is better if we do it together. Together with God, together with brothers and sisters who lift us, hold us accountable, and encourage us. Praying that as you continue along the path before you, you are filled with the hope and joy that come from knowing Jesus. You are loved!
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