Growing a boy: More Than a Baseball Game

 

More Than a Baseball Game: Lessons On Neurodivergence

 

It was a warm, breezy day. The sun was out. The grass was freshly cut. It was a great day for baseball. To make the morning transition easier, uniforms and snacks were arranged neatly the night before including filling the water bottles and loading all the gear into the car. “Game day will be great!” I kept repeating to myself as I sipped my morning coffee and enjoyed the first few moments of a quiet house. Without warning, I heard our three kids jump out of their beds and race to the table for their pre-game breakfast. “So far, so good.” Before I knew it, cleats were on and we were driving the short 10-minutes to the ball field.

This season of baseball was unique. My husband was the coach and all three of our kids were on his team. Plus, this was the first year our daughter, the oldest, had ever played. Her two younger brothers had been playing since kindergarten. It was also the first year of “kid-pitch.” If you aren’t familiar, it is just as it sounds. Kids pitch the ball to the other team. This is a huge step up from coach-pitch they played last year. It felt like the major leagues to our boys…the first real experience using all their skills and training since pee-wee baseball.

The team, compromised of 9- to 11-year-olds, quickly put on their gear and found their positions on the field. “Let’s play ball,” I whispered under my breathe. To be honest, I was actually holding my breath. Deep inside, I asked myself, “Lord, how is this really going to go?”

Our youngest child experiences life differently from neurotypical children. His cerebral palsy and epilepsy have left a mark on his life as evidenced in the challenges he encounters while performing everyday tasks such as brushing his teeth, getting dressed, or regulating his emotions and senses due to other medical complications. Thankfully, his cerebral palsy is mild, his seizures are mostly controlled by medication, and years upon years of therapy have supported him as he learns impulse control and behavioral regulation. But despite all of that, he still has invisible disabilities. Because his disabilities are not always seen, it can be hard to understand him when things go…shall I say… sideways.

What started as a perfect day for baseball ended with a day that felt like a millstone hanging around my neck only getting tighter and heavier with every moment. You may be asking, “How did this happen?” Well, I was asked the same thing as I deconstructed the morning.

So, what happened? The morning was great…until strike one. Strike two. Strike three. The weight of the emotions and the public display of failure weighed heavily upon our son. He felt it throughout his body like the deepest depths of the ocean. He was a “failure” and everyone witnessed it. By this time, I raced from the first base side of the field around the backstop to the third base side to be his emotional support. The amazing kids on the team came up, patted him on the back or head, and were saying things like, “Good job, buddy!” “Good try.” And “You’ll get it next time.” These are all very normal responses from teammates. There was no malice. Only support. However, the weight of the “failure,” the in-his-face encouragements, and the unexpected nudges and pats were just too much. Anxiety kicked in to high gear and then he began to spiral; tears fell from his eyes like a waterfall, he began twirling repeatedly, the words flowed from his mouth like an erupting volcano, and he began to throw his mitt around in the dirt dugout. His words were loud and unkind. Parents and teammates began to stare. Some gave looks to me like, “I would never let my kid talk to me that way!” Or a look that said, “He needs discipline for behaving so badly.” Lovingly and with great concern, his teammates came over to him, looked up at me and asked, “What is wrong with him?”

What. Is. Wrong. With. Him.

Those words cut deep into my heart. The tenderness and childlike innocence of such a simple question with an answer that could fill volumes. My first thought was, there is nothing “wrong” with him. He is simply encountering a difficult emotional moment, like we all do from time to time. Sometimes his emotional encounters can be bigger than other kids his age. It is that simple. That’s it. Yet, here is how I responded, “Thanks for asking and caring for your teammate! He is feeling a little overwhelmed right now and needs space. The best thing you can do for him is pray for him and give him a bit of space.”

My amazing husband/team coach was prepared for this. He gently kneeled down, put the noise cancelling headphones over our son’s ears and played the familiar Forrest Frank songs on repeat. Slowly, calmness came over our son. That breath I was holding, I finally let it out. Phew. I was anticipating a moment of dysregulation. It happened. And now that it had, we can move on…for now.

As a parent to a neurodivergent kiddo, my husband and I constantly balance inclusion, practical supports, accommodations, behavior coaching, safety sweeps and … the hardest of all, managing the expectations of others. In the depths of my heart, I want to “just” be mom. I want to enjoy the simply pleasure of watching all three of my children play baseball without having to wonder if or when a moment of dysregulation will happen. I have to be prepared to support him all the while feeling the pressure to explain and help onlookers understand, too, like I must justify or share my son’s incredible medical history every time he becomes dysregulated. As I try to comfort my son and the other parents around me, I think to myself, “It’s just baseball. We will recover from this.”  In reality, it took me two days to finally deal with and process this event. It wrecks me to the core every time, seeing my son struggle so much, making every effort humanly possible to support him yet knowing, this is his (and m) lifelong reality.

After a moment, I looked around. I longingly stared at the other mothers who were sitting in their folding chairs, chatting it up, drinking their coffee, and making plans for after the game. Instead of joining them, I was one hundred percent “on,” waiting and anticipating an SOS moment or text from the coach/husband/dad  telling me that an intervention was needed and was needed now. It is taxing in a way most will never understand unless you have experienced it.

In the spring, when the daylight stays longer, the flowers bud in fragrant explosions, and the birds are chirping, many families are preparing for an amazing baseball season ahead. They carefully pick out new gear such as bats, mitts, or new cleats. Uniforms are neatly hanging in anticipation of the first game, team picture day, and countless memories yet to be made. Laughter surrounds the conversation with reflections of the last baseball season. Joy. 

In addition, however, our family is preparing contingency plans. We are planning tools and toys for sensory break. We must decide how much to share with his other teammates and their parents about his medical conditions (fearing if they know, our sweet son may be treated so differently). It is victory that the uniform is not lost, no regard to if it is pressed or not…we have it. It is on his body. This is the benchmark for success. We fear team picture day. Will he smile? Comply or freak out because there is too much pressure to look and be a certain way? It is a day, a moment in time we dread. Will the memories made this season be filled with excitement and joy or just another season we "got through...learning hard lessons throughout every practice and game."

So as your family slides into the baseball season, please remember the experience of my son and the experience of his siblings and of us as his parents. Please know that we are trying our very best to help him manage his visible and invisible abilities. Parenting looks very different for our youngest than it does for our older two; and trust me, we have spent every moment since he was born seeking professional help, reading every book and article, and taking parenting courses to support the extra-ordinary needs of our son. 

What we really need this baseball season:

• words of encouragement
• inviting us into conversations (and rejoining those conversations if they are interrupted)
• asking, “How can I help?” 
• teaching your kids about our son's unique needs (to include him in ways he can accept)
• noticing our other two kids

What is not helpful (anytime, baseball season included):

• offering judgement
• eye rolls
• simply turning away

It is a lonely world at times, but one I would enter into a thousand times…because in that world holds the beautiful, unique, complexity of our son who was purposed and designed specifically by God. 

As a family unit, we are a team. We may do life differently than the “norm”. We may have to parent differently, but it is all in the vain of supporting the unique needs of each of our three children. Please come along side us. Be our support and our cheerleaders. As parents, we are so hard on ourselves and often feel ill-equipped to know how to handle every moment of dysregulation.

 And then I remember:

• To be a mother is joy. 
• To be a mother of a medically complex child is confusing. 
• To be in a community who rallies around us, supports us, and loves us just as we are….now that is pure bliss. 

Happy baseball season.

-B

 

 

Growing a Boy: With Every Season

I honestly thought life would even out after our dear youngest was born, however, with each passing season, it becomes increasingly more...more of everything. The decisions are countless. The stresses too numerous. The weight seems to never lift. I daily pray for wisdom. It is tearing me apart. 

Am I doing enough?

Am I doing too much?

What if I make the wrong decision?

What if.....?

My sleep is interrupted nightly by anxious thoughts. My head reels trying to research more....the need to find the "right" answer, the correct path. I need to do something rather than watch my child flounder.

Yet, I too I am floundering ... in a sea of what-ifs. My sandy ground gives way as I plumet, slowly rolling towards the sea. I have no way to stop. My hands grapple for the nearby branch, yet that too breaks...and with it, patrially my hopes. I stay in the fight (barely most days) carrying the burden well. Even if it looks like I carry it well, my soul is slowly being crushed by its weight. What am I to do? In the solitude of my situation, I see no escape. Yet I want an escape. I know God will always give me a glimmer. Today, my glimmer? I am still trying to find it.

Being a medical mom is isolating. I fear I talk too much about my struggles and push others away yet when I can't/don't, they swallow me. I am stuck in this in between. I want to protect my child, my other two children, my friends, the world from the anxious thoughts I daily hold. It produces nothing but isolation.

With every season, I cling to Jesus. He is the Author of my faith. Without Him, I would be nothing. So, I move forward, in this season today, still seeking and praying for wisdom. In His time and in His way, I know He will provide all that I need. I must simply wait, trust, surrender to the Maker who knows far more than my eyes and heart can see and know. I cling to the cross. 

"Don't worry about anything, but in everything, through prayer and petition, with thanksgiving, present your requests to God." Phil 4:6

Growing a Boy: Help Me Sail

I knew it would be hard. Yet the hard has not been at all what I expected. Days crying, researching, withdrawing from the world, not knowing what to do. Most days my head feels like it is barely bobbing above the water. I gasp for air. One more wave will surely pull me under. This is not the life I imagined having yet here I am. I seek to have a heart of gratitude, to see the good in all that is around me. I also recognize in the blip of life, these moments are small but the decisions I make in these moments will leave lasting evidence and imprints on my child.

I have a disabled son.

He may not seem it to the looking world. I think that is some of the challenge. The somewhat invisible challenges are often harder for onlookers to embrace because they are not seen--they are not tangible. To be honest, it is hard for me sometimes to embrace them too (and I am his mom). 

Entering first grade, I had such hopes that our boy would thrive. He overcame so much in kindergarten that I thought without doubt he would keep propelling forward in the world of academia. A month into first grade--- road block after road block we have hit. I am left with the desperately difficult decisions-- do we keep going? Do we repeat 1st grade? Do we just "get through" this year and then move to a new school next year? On the surface (or even typing them), the decision does not seem that big. Am I overreacting? Am I hype focused on something that doesn't really matter?

But it does matter. I am his mom. I am his first advocate (along with my husband). We lean into our faith...no matter how little our faith might feel in the face of these mountains. In a moment of desperation, I purchased a necklace on Amazon. A necklace, you may be asking, what does that have to do with your struggle? The gold chain, with a circle pendant, holds a mustard seed. A small, almost unnoticeable mustard seed. If you are the believing type, you may recall the parable. A faith of a mustard seed can move mountains. That is the hope I am clinging to. If I can just hold it together, "muster up" a bit of faith, I can sail through the storm--not drown. The Hope that rests in Jesus alone is enough. He is good. In His love, He gave me my medically complex son. Truly a gift. Through my son (and many tears and toil), my faith deepens. I see God answer prayers in subtle ways. I find ways to uphold others in my community who are also struggling. In my suffering, I strive to serve. To remove my eyes from the pit in front of me and look up and look around. What beauty to behold. Just in this past week, I have seen not one but TWO double rainbows--at just the right time. A visible reminder of God's love and promises to me. What joy and hope. In this past week, a dear friends sent me and unexpected "just because" "I'm thinking of you" gift. Wow! God does see and hear the deep longings of my heart. 

I recognize we are all suffering in some way. We are all facing hardships of varying kinds. I am not alone. I try to fix my eyes on the author of my faith, share my struggles with others, see the struggles of others and cling to my mustard seed of faith. God will work out the details. I simply hold my hands open and up. I surrender, Lord. I give you my little faith, my tears, my toil, my deep pain. Prevent me from drowning. Instead help me sail.

Growing a Boy: I "just" want to be his mom.

As you can imagine, this school year started with many complexities. My plate is crowded with obligations and responsibilities. Does my son have a disability? Yes. Does he need different scholastic accommodations than traditional students? Yes. Does he require therapy within and outside of the school day? Yes! Do I have other children, a job, and a household to run? Yes. However, there needs to be a surrender in the middle of the chaos.  As our family falls into somewhat of a rhythm of the school year, I find myself anxious. I am asking myself questions like:

o   Am I pushing too hard for supports/accommodations?

o   Is it worth disrupting my son's school day for therapy? (and all the make-up work!)

o   When are too many resources/therapies just that…too many?

o   Do I let him grow “as is” or intervene?

 

I find that my phone is tethered to my side during the school day, “just in case” the school calls to tell me that my son had a seizure or something even more catastrophic. Is this a healthy way to live? No.

 

What if I am "just" his mom? What if I fully surrendered my son to the Lord? I realize that my thoughts and feelings are based on fear and worry. When I live here, life and joy are taken from me.  How, then, do you reconcile the practical everyday questions with the life of surrender and trust? 

In all honesty, I don't want to mess this up...for my son or for myself. I don't want to be so wrecked that I walk around with a perpetual lump in my throat, a pit in my stomach, and a doom cloud floating over my head. Sadly, this is how the days have felt recently. God, just take my anxious thoughts. Allow me to surrender. Can I "just" be my son's mom? Can I stop being an advocate for him? 

In this, I pray for wisdom. I pray for healing. The trauma of his birth just keeps seeping in. I can't help but remember our son fighting for his little life at just days old...the pumps, the tubes, the medications...the many unknowns. I do not want to live a life dictated by the past. My son is alive. That should be enough, right? But the wounds are deep. Life is fragile. The mind is fickle. Help me, Lord. Take control over my heart, mind, and soul. You be the one that fills me, Lord. You be the one to answer the many questions I have. You grow him because today.... today, I "just" want to be his mom.

 

Growing in Faith: Come and Rest

Have you ever wondered how to experience joy when the world around you feels chaotic? This is a question many of us have asked ourselves. Our questions may seem too big or the unknowns...well, too unknown. But we, as humans, have the capability to navigate, persevere, and conquer the mountains in front of us. 

We get to choose our response:

1) We can be raw, vulnerable, real, authentic, and transparent. Yet, this comes at great risk of shifting our chaotic world onto our friendships --or-- being disliked, ignored, or made fun of.

2) Alternatively, we could give the obligatory, standard response, "Everything is okay." "We are just figuring things out, you know, one day at a time." Yet with this response, we remain unseen and unknown.

Neither response is wrong, but isn't there a better way? 

Yes, there is! The answer is found in Jesus. When we carry the burden alone, we can feel hopeless, without a landing place. Jesus came to carry the burden with us and for us. We can surrender and trust that Jesus is faithful. But are we willing? Are we willing to surrender? Are we willing to learn? Are we willing to rest? Jesus can heal even the deepest wounds. We simply get to come and rest.

"Be still and know that I am God."

Growing in Faith: Widely Complex Emotions {change}

When a season ends, we sit and we reflect. We mourn and we celebrate. We take a deep breath and pause in silence.

What next?

The Band-Aid feels like it is ripped off way too soon, but then you realize that your wounds are healing. They needed air and space so that the skin could be fully renewed.

Seasons in life are like this. What feels like “it is gone too soon” or what feels like “I can’t breathe” when a season changes, we know we are stronger than we were when we first entered the season. Many lessons have been learned. We slowly let our hand off the handrail to realize that we didn’t fall…but in case you were worried, you looked back to see your village standing behind you cheering you on.

You cry. You grieve. Your emotions are widely complex yet you know… 

YOU. ARE. ENOUGH. 

You are seen. You are loved. You, dear friend, have a purpose beyond any purpose you can see for yourself. Just being who you were created to be has left a lasting impression on those around you. You learned to show up—cry with others, pray deeply, listen more closely, and refrain from being the center of every conversation. To be at the table, known by name, is simply enough.

These widely complex emotions are valid. Sit in them. Allow yourself to feel all the feels …then...just then, when you process, cry, and grieve, look up. Know that the Father above looks upon you with deep joy, love, and kindness. You are His. He already knows where the next fork in the road will take you. Trust Him. Trust the road. Have faith that the next season will bring about a great impact on your life. It, too, will change you and heal you in unexpected ways. Lean into it. Change is hard. Change is frustrating and at times anger producing – but don’t sit there. Grieve your loss, come to an acceptance of sorts, and look forward to embrace the beautiful seasons ahead—seasons that have been predestined by the Lord, JUST. FOR. YOU. Yes, just for you.

Those in this season may find their way onto your new path once again, your new road. Welcome them. And at the same time, allow yourself to fully embrace those who walk shoulder to shoulder with you in this new season. Even if the new season is unexpected (or comes far too early), know there is a greater plan. A far greater plan than you may ever know or see. YOU. ARE. SEEN. You are seen so much that, the Creator of all, deeply cares about the widely complex emotions you are feeling. HE. WILL. HEAL. YOU. He will heal you, perhaps not in a physical way, but rather in a deep spiritual way. So let the Band-Aid be removed. Feel all of the feels. Grieve. Accept. Pray. Trust.

GOD. HAS. YOU.

He always has and He always will. Day by day your wounds are healing, your heart is transforming and your new season will change your (body, mind, and spirit) in ways that only the Creator can. Embrace it with deep passion, with deep trust, and great joy. (But it’s okay to take a moment and grieve…allow yourself to sit there for a moment, in silence, washed by the Spirit).

 

Then, move forward in great hope. You have a purpose and a gift the world desperately needs. Share it.

Growing a boy: When Seizure Increase

Our Oliver experienced another short seizure today. My heart is breaking, my head is spinning...how can I support this little guy? I am thankful this one was under 1 minute and was pretty mild. Perhaps it is the heat? Maybe it is the fact that he fights naptime and has eliminated his nap altogether. I remember with my other two, I looked forward to "no more naps" because that meant longer outings, different play dates, and in many ways an untendered schedule. No naps and/or a lack of sleep for Oliver can result in seizures.

Life is complex with a child who has physical or mental effects from a medical diagnosis. For example, did you know that heat can be a trigger for seizures? I just learned this today. It is recommended your child take showers, not baths in case they have a seizure--yet you should have a shower seat and handlebar in case they have a seizure while in the shower? Everything-- EVERYTHING seems so much more complex. As his mother, I think and overthink his safety--because I have to.

In many ways, the older he gets the more challenging it is to parent him. Growth causes seizures. Brain development causes seizures. Weight gain can cause seizures. Skipping a meal can cause seizures. Most result in more blood draws to determine the level of medication in the bloodstream. It is heartbreaking to see my kid experience seizures. It is heartbreaking that he has to get "pokeys" (aka blood draws and shots) often. This is his normal. This is my normal. It is tough.

Along with his other medical diagnosis and sensory struggles, every moment of his waking day is "all hands on deck." It is explaining, reexplaining and reexplaining again what we are doing or where we are going. It is creatively talking him "down or out" of a raging fit because something did not go as expected, or was too loud, or something brushed again him in a "wrong" way.

Yet, in all of this, God is good. He provides resources, answers, support and wisdom. In the daily ins and outs it feels lonely and exhausting yet, I know Jesus walks with me. Thank you for reading my words, understanding a bit of our world and for giving me (and Oliver!) grace as we navigate the beautifully complex human God has created him to be.

My love- B

Growing in Life: Remember, it’s only for a season.

 

Remember, it’s only for a season.

 

 

Just getting by in life… and then you have a choice? You can do anything? What freedom we have yet we are afraid to embrace!!

 

We have opportunities those before only dreamt about yet we hide.

 

We have a choice to be great. We have a choice to live a life of greatness, according to our purpose and calling. How often we do not fulfill our purpose because of fear.

 

What is there to fear but fear itself?

 

Embrace change. Embrace the life choices you have.

 

Stop just getting by.

 

Open your eyes to the world around you.

 

You live with blinders on. Who placed those blinders on you but you? Who can remove them but you and Grace above?

 

Release yourself from past. Release your expectations of the future.

 

LIVE!

 

Live life by seizing moments and opportunities.

 

Seek what is good. Seek blessings, not hurts and failures. See each step as a step forward. As a learning experience.

 

LOVE!

 

Love where you are at in life, despite how down, at times you might feel. Love because that is what we are called to do. Let hate be captured. Hate for self, hate for others. What joy comes from holding yourself random over hate?

 

LAUGH!

 

Enjoy time. Even if it may seem boring…find JOY! Laugh. You will not always get what you want in life, but learn to laugh.

 

Remember, it’s only for a season.

 

May 30, 2007

Growing in Faith: What is your "tree" of "the knowledge of good and evil?"

To my fellow believers.

Ok...2022! Goals! Mine (among many)...read the Bible's Old Testament. Last year, I accomplished reading the New Testament, but the OT---now that is a different story.

Diving into Genesis 1-3 this morning, I was made acutely aware of (shhh...I am going to say it) .... TEMPTATION-- but not in the way I have traditionally thought about it. Stick with me okay...I think this may have an impact on you too!

I only got to Genesis 2:9 before God started speaking volumes to me---hence the reason I am typing now instead of reading.

Scene: God just created land, water, sky, fish, animals and THEN man...Adam. The Bible mentions briefly about the world man was put into but then a verse later, God says:

 "Then, the Lord planted a garden in Eden....there he placed the man he had made."               (Gen. 2:8, NLT).

Did you catch that? God PLANTED a special place JUST for man...and PLACED him there. Now, if that is not the highest honor, the best gift, the most profound thought! Out of ALL that God created, he created yet another special place just for man. This got me thinking. Not my main point here, but more of a side thought---

• Where has God PLACED you/me? What specific "garden" has He created JUST for you? Your family? The location of your home? Your job? Friendships? Are we enjoying it? Embracing it? Appreciating it?

• What a BLESSING we easily ignore...not really seeing our "placements" as truly gifts from the Lord! Talk to God about that a bit. I think He will reveal so pretty amazing insights to you!!

 Okay--that was a different tangent, let me get back to my main point.

After God placed man into the garden in Eden, we are told that in that garden, God also planted two specific trees in the middle of the garden: "...the tree of life and the tree of knowledge of good and evil." (Gen. 2:9, NLT). ANNNNDDDD....this is where the Lord stopped me! Having read this story many times, I know where this is going but I kept reading...

God continues by telling man of his purpose in the garden. The PURPOSE for man being in the garden was "...to tend and watch over it." (Gen. 2:15, NLT). Ok, question time again: What has God called you/me to "tend" and "watch over?" It seems so simply, doesn't it? But, oh how distracted we can get from our God given purposes! (Pray about this one too!)

Then God put a boundary, a rule, a "do not do" command, "You may eat freely the fruit of every tree in the garden --except from the tree of the knowledge of good and evil." (Gen. 2:16-17, NLT).

God put one teeny, tiny boundary on man---the TREE! I wonder the thoughts of man in between the time man was placed in the garden and woman was created (Gen. 2:18-23). Where did man's thoughts turn? To the "off-limits" tree or to purely enjoying what and where man was--BEING PRESENT in the moment of time...enjoying the work and purpose for which he was created? Then I think about us--what do we often think about and focus on. Where would your mind go--onw that you could or could not do? (Remember, sin had not yet been introduced to man--yet--I still wonder what man was thinking. Maybe there wasn't even a thought about the tree he was not to touch--until he was given company (a helper, just like him). Shortly after, God made woman from man (Gen. 2:18-23) and the story gets more interesting. 

Cliff Notes version (so I can get to my point): The serpent comes to tempt man, they accept the temptation and are kicked out of the garden. Done. Boom. The rest of history is based on the events played out in chapter 3 of Genesis. 

My bigger point: WHAT IS YOUR FORBIDDEN TREE? That one "thing" that is centered in the middle of your life that is off limits--that God has told you is not good for you---yet- you still want to test it, look at it, hold it, walk around it, entertain it (even just a "little bit")? Are you not able to fully separating yourself from what God says is not good for you!?  Is it social media? Is it a friendship? Maybe it is shopping/overspending or neglecting Bible/prayer time with your Maker. Perhaps it is over eating or ..... the list could go on.

What ever your "tree" is, recognize it for what it is. It is a GOOD boundary, set by God to protect you and give you life and FREEDOM! We don't often think boundaries or "do not do's" create freedom, but I have personally experienced that boundaries really do allow us to live full, purpose filled lives. It takes restraint and discipline but it is worth it.

So, in this new year I encourage you to ask the Lord what "forbidden trees" He was placed in your life (for YOUR benefit!). And when He shows you, resist them!! Choose different than the first man and women (Adam & Eve). Choose to accept God's boundary AND THEN focus on all that is good and life giving "trees" He has given you rather than those things in which God has said are "not for you." God is a God of Grace and Love. His concern and care for you runs deep. Remember your HOPE in Jesus that you are not resisting the evil on on your own but rather with the fully armor of God and the gift of the Holy Spirit.

Enjoy this first day of the new year. Know that God walks with you though the power of the Holy Spirit and that He desires you to have a rich, meaningful life by embracing all He has created you for! Enjoy Him and those He has placed around you.

Maranatha. 

Growing in health: A wrist device

It all started about six months ago when I got my Fitbit. I realized how restless my sleep was. How inactive my body was. And more importantly, I realized how anxious I was as noted by my high resting heart rate.

In a season of uncertainty, on many levels, I allowed my mental stress to affect my physical health. Within a few weeks, I began to recognize the signs my body was giving off when my heart rate was increasing: Shoulders up to the ears. Heart pounding a little faster. My hands clenching the steering wheel just a little tighter. My voice raising. (Do any of these things sound familiar to you?) None of these things are good or healthy. None of these things do I want my children to learn— My bad habits.

Today driving the kids to school, I was again thankful for the little device around my wrist. At a stoplight, I glanced down and I noticed that my heart rate was way too high given the fact that I was simply just sitting in a car. After taking several deep breathes, releasing my shoulder tension, and losing my grip around the steering wheel, my heart rate dropped by five points! Can you believe it!?

I resist to use the word “mindfulness,” maybe I am just learning to be more aware—but I would recommend that each one of us take a look into our habits and our physical reaction to the world around us. Within minutes, I felt so much more peace and calm. My mind was clear and my words were more succinct. I was able to fully present with my children on the rest of the drive to school. 

In a world where life demands multitasking, our bodies simply cannot catch up! There is no doubt that certain seasons are busier than others. And certain times of the day that are more strenuous than others. Regardless, we are called as believers to take every thought captive to the Lord! As we do this, we can experience what true peace truly feels like!

I write this not as a sales pitch for a fitness device but rather as a reminder to check in with your body. Examine your attitude and your actions and how those might be influencing (either positively or negatively) not only yourself but those around you! I was surprised I have learned so much about myself from a tiny little device wrapped around my wrist.

Growing a boy: Triumph

It has been 24-hours since our sweet youngest experienced his "epic" day in hospital-land, 45 minutes away. He enjoyed the special "just with Dad" time and the one-on-one attention from multiple providers (playing peek-a-boo with them as the providers discussed his progress). The day was filled with shuffling from this appointment to this meeting to that scan. It went seamlessly. Our family continues to be impressed with the level of care, attention to detail, honest discussions, and the integration of services we receive on behalf of our son.

So, here is the news:

• Chest x-ray----- CLEAR
• Echocardiogram ---- CLEAR
• Lung Capacity ---- GROWING
• Surgical site ---- UNCHANGED
• Overall development ---- ON TARGET

The team of providers was BEYOND thrilled with our boy, almost surprised at how well he is doing considering his experiences in that first month of life and the two new diagnoses in February. We are thrilled too.

I thank the Lord for the work HE has done in Oliver. God has been faithful to direct us as parents and we willingly submit and obey-- PT--YES....OT---OK! "Special" Preschool--- SURE! Because of God's wisdom and our many "yeses," our son is thriving. Yet, we do not take this for granted. We know that this sweet boy belongs to the Lord. We pray for and will accept God's will for our son.

We will be reunited with the team of amazing providers again (minus the echocardiogram) in 18-months. Praying for another amazing report.

Thank you for joining us in prayer and rejoicing with us.

Growing a boy: I had a moment of PTSD

Our family is settling in after Oliver's February diagnoses (2021). What felt hopeless and insurmountable for Oliver has now become our everyday---managing medication, incorporating PT & OT into daily routine, researching/education and shifting how we parent to better accommodate how our sweet youngest processes life. It has been an adjustment but an honor to see this little man's life unfold and to rely on God to give us wisdom and direction in the middle of this pandemic. 

Looking back on Oliver's last 4 and a half years of life, it is a privilege to stand where I do. To watch him thrive in preschool--almost mastering skills I thought he would never learn. Peering at his sweet sleeping face, holding his creations from school and reflecting back on his amazing use of language and words. I am in awe.

Despite the growth I have seen, I had a flashback moment today while driving to pick up Oliver's siblings from school. Exhausted from preschool, Oliver quickly fell asleep within 5 minutes of being buckled into his car seat. As we drove the 25-minute drive to his sibling's school, down the leaf covered street, Oliver began to sporadically cough in his sleep--more of a gag. His eyes closed---sleeping, still, not moving.

Instantly, my mind went to worst case scenario. I was reminded of when he stopped breathing after we finally brought him home. I was reminded of the time when Tyler rapidly drove Oliver to the ER, rubbing Oliver's sternum almost the whole way. My mind recalled the pain of trying to feed him while dealing with his reflux coughing fits.

In the pouring rain on a gloomy fall day, with snowing leaves, I had a moment of PTSD.

Every few seconds I looked back---my mind conjured up a thousand questions (& panicked scenarios) while trying to keep in my minivan in the yellow lines on the wet roads:

• Is he breathing? Does he have color? Is his chest rising and falling? Is he moving---at all? Do I need to call 911? Should I wake him up or let him sleep? 

What felt like an hour (seriously) was really only two stop lights. By that time, Oliver cleared his throat, moved his hands and adjusted his head -- almost as if to say, "Nothing to see here. I am fine, just choking a bit on my saliva while I sleep."

I could have had a heart attack; my heartrate was so high.

**SIGH** Relief.

I pulled the van safely into the school parking lot, reversed into a parking spot and about lost it. Grief. Pain. Hardship. All of those "not so fun" emotions from a "not so easy" season of life--I need to let him sleep. I need to recover from my emotions. A kind act from another mother--who brought my other two children to my van while Oliver slept--was just the moment I needed. A moment of grief, a moment of acknowledgement--sitting there for just a moment--before I had to jump back into my role as a "Mother of Three"

I am thankful that mother, unknowingly, gave this moment to me. I am grateful I could recognize but not linger in my grief. In the past, it would have taken a while for me to "snap out of it." The Lord has blessed me with healing, with joy, with peace about all the events we faced as a family upon Oliver's arrival.

I had to laugh a little though--of course ALL of this comes on the eve of his annual surgical follow-up (which includes a chest x-ray, nutritionist, echocardiogram among other tests/procedures). It has been a while since I have had such a blatant reminder of Oliver's tough beginning of life story. 

So, I sit here at my computer--all three children snug in their beds for the night--grateful. Oliver continues to remind me of just how precious this life is. None of us are guaranteed tomorrow. What we do--What we say--How we say it-- it ALL matters. I hope you take this as a reminder too...we simply trust the Lord, submit our ways to Him and He will always show us the way. He will always be our Healer. He will always bring us through our hard things--whether on earth or in Eternity with Him.

Glory be to God Almighty.

Growing in faith: Let this cup pass

Jesus knew He was on His way to death. He cried out to God, "My Father, if it is possible, let this cup pass from me." Then, in recognition of God's Almighty Power, Jesus said, "Yet not as I will, but as you will." (Matt 26:39)

This passage reminded me of OSH's day of birth. On the OR table, having just had my premature, unresponsive son cut out of my belly, God directly spoke to me saying, "I giveth and I taketh away. You have to be okay with that, ok?!" 

It was a command. It was a fact. It was a reminder. It brought me comfort. Knowing only God is in control of life and death--no matter what the medial team did or did not do. No matter if the doctors and nurse did everything perfect or not. God told me that He controlled Oliver's life. 

In my Bible reading today, I was struck by Jesus' words, "Yet not as I will, but as you will." (Matt 26:39). In light of all of the recent testing and testing to come on our youngest, I will commit to praying this prayer..."Your will be done, Father, Your will be done."

As I surrender, pray, and accept, I find myself in a glorious spot. I find myself again recognizing the beautiful gift our youngest son is (all of our children for that matter). I find myself staring at him in awe of all he overcomes everyday to perform daily tasks. I am reminded that he needs a bit more patience and direction and handholding (literally and figuratively) to accomplish simple directions. I realize that perhaps I am not the best person to teach him preschool "academics" but I am his biggest advocate and resource seeker. I see that I cannot compare our family dynamic with other families in similar stages because our family must do life slightly different. 

I will pray that God will train up his mind to overcome challenges, but to pray for healing...why? He is perfect just the way God intended him to be. It was and is God's way that our son came into the world as he did. It is God's way that as parents we are refined by the "unexpected," our responses more quickly turning to God than any thing else. 

When I once had no hope, God is faithful. With a few new discoveries and possible avenues of support, I know that I can forge ahead in confidence and faith. Our "perfect" son, just as God intended him to be. I write this with a smile on my face and a joy in my heart. God is holding me fast, teaching me, and encouraging me to look beyond what is right in front, the temporal. God is so gracious to us by giving us Oliver, his "complexities" and all. Our little boy is a miracle. He is a teacher, one who teaches us daily to turn to the Creator. 

 As you will, Father, as you will.

Growing in Faith: Without Fail

 Without fail, God shows up.

In a song. In a "new" to me program. In unexpected phone calls and messages from friends.

God shows up. Without fail.

I am feeling distracted but have a renewed hope. I feel deep sorrow yet I am peeking out of the dark woods to a beautiful meadow of wildflowers, flooded with sun.

It is a new day.

This day, I will follow the Lord and keep doing so all the days of my life.

He is faithful.

Growing in Faith: I lost my mustard seed

The Bible says that even a small mustard seed of faith can move mountains (Matt 17:20). The Bible says that if we ask anything in His name, He will give it according to His will (Matt 21:22).

I must say, I lack faith.

In a recent pending diagnosis for one of my children, I lack faith. A diagnosis that seems so permanent, disruptive and hard, I am failing to see how God might redeem this. I find it difficult to pray for healing. I find it difficult because when I think about it, it brings me back to the traumatic events of his birth. It conjures up the emotional pain of the first two months of his life that was followed by a difficult 2 years of life. Praying reminds me of his daily struggle and how I see him acting differently than a "normal" preschooler.

How do I get past this? No, really, how!? Any ideas?!

I am fighting for faith yet it feels like an uphill battle. Possibly because we do not yet have answers. Possibly because I can't control this diagnosis. Possibly because I have run out of tools in my mothering-toolbox. 

I want to run away, scream, drink a lot of coffee, shop...but I need to fight this battle on my knees. I need to resist the temptations of this world that would call me to anything other that Jesus. Because my head tells me that this battle will ONLY be won in Him. (I just need my heart to follow).

So, for just this moment (and the next and the next), I will TRY to surrender, open my palms and offer my 1/2 mustard seed of faith. I will TRY to figuratively lay my son at the alter of the Most High and allow Him to work, heal, restore. I will TRY to focus on what God has already done. I will TRY to focus on my son, just how he is! He is not a diagnosis. He is not. He is not a label. He is not! He is a different kind of beautiful...just like we all are.

Please pray for my faith, my husband's faith. Pray for acceptance, answers, tools and PEACE. Pray that we can look beyond what is and see HIM working....because all we need is a mustard seed of faith.

Growing a family: Defeated in the Victory

 Have you ever felt defeated even in your victory? Today feels like that kinda day.

1. A decision was made.
   
2. I am on my way in a few short minutes for one of two medical appointments this week.
3. My son has an even bigger appointment in just a few days.
4. We are celebrating a birthday and a half-birthday.

 

So much to celebrate. So much to mourn. So much to process. So much to just trust it ALL with the Lord.

The Lord is faithful, even in our failings. The Lord is faithful, even when we make a decision (not knowing what is better or best). The Lord is faithful as we wait for diagnosis. The Lord is always faithful. 

We must remember this when we feel defeated on our victory. Why? BECAUSE WE ARE VICTORIOUS! We stand in a position with the Most High. Because HE fights for us. As our pastor said on Sunday--we know the end of the Book. We win. 

Let us hold that posture today. We might **FEEL** defeated but we are not. We are victorious IN HIM and in Him, He works all things together for good.

I will try to rest in this today. Will you?

Growing a boy: Climbing a mountain...daily

First...THANK YOU. Thank you all for your prayers. We can feel them. Thank you for your encouragement. We need them! God knew community was so valuable and we are beyond grateful for the one surrounding us now. YOU are a part of that.

So a little update...

OSH IS EXCITED! Wow! He is so excited about his upcoming appointment at the hospital daddy use to work in--so much so that he has already begun to pack his "-uggage" with stuffies and Little People toys. He decided he wants to bring along some clothes and is also wondering if he can take a picture with the big machine...all by himself. He is excited he gets a date with "just dad" and is even more excited to pick any food he wants after his big appointment. This is truly a blessing! It brings me peace to see him excited to go to the hospital for his upcoming "picture appointment." 

God has heard our prayers (but let us keep praying!).

 

From the last blog to this, I spent much time online learning & re-learning about fine motor function and activities that could help OSH strengthen his grasp, specifically pencil grip for preschoolers. (Fine motor skills...something OSH has struggled with since infancy). I found a FANTASTIC blog written by an anonymous occupational therapist describing many activities such as using smaller broken crayons because they "force" a child to use a tighter grip (too bad I just threw out all of our broken crayons) and "pencil grips." Little did I know....WOW...there are VERY strong opinions about pencil grips. I will spare you the details, but we decided to take a "$10 risk" to purchase a pack of three pencil grips. When they arrived yesterday, I was eager to try them out...and OSH DID GREAT! All this to say...neurological deficits (or not), I feel empowered with some new tools that I can use at home to help OSH grow in his "scholastic" and "artistic" and everyday abilities. 

In life, we often take the simple things for granted like holding a pen, holding a toothbrush, scooping yogurt onto a spoon, opening a door handle or pulling up our pants. To my son, these are mountains he has to climb multiple times every. single. day. And I am SO proud of him for doing it! Without realizing, he is persevering through difficult tasks moment by moment with a smile and good attitude (most of the time). He is too young to feel "sorry" for himself and has yet to make up excuses as to why he can't do something. I PRAY he never does. I pray that every day, he keeps climbing up his mountains, conquering them one after the next. I BELIEVE IN HIM! He is my inspiration.

Growing a boy: Ugh! The Turning Point

Nothing about our youngest is "normal." Yet I think about myself, my husband, our other two kids, my friends etc. And then I ask myself, "What really is normal?" because God has made us each so perfectly unique.

Over two months ago, I took OSH to a neurologist, per the recommendation of his Seattle doctors. In that neurological appointment, it was revealed that OSH does have neurological deficits...we just don't know what exactly they are or how extensive they are. The doctor placed OSH in a category, giving him a mild diagnosis (that I do not wish to share out of fear of labels and partially out of an unwillingness to accept such label). It was recommended that OSH receive a head MRI to further explore his deficits as well as a means to better facilitate his growth and learning. However, to get this MRI, OSH would need a COVID test and sedation. 

My initial thoughts, "NO! I WILL NOT PUT MY SON THROUGH THAT TO SIMPLY "KNOW" WHY HE ACTS THE WAY HE DOES...IT DOES NOT CHANGE WHO HE IS!" (as I type, I can feel my blood pressure rise)

My husband agreed that it was not a necessary procedure, especially given the raising cases of COVID in our city. SETTLED! DONE! I had my "normal" boy "back." (I could put his medical difference behind me and continue on as though he was and is in fact, normal.)

As the weeks have gone by since this appointment, my mind and head fluctuated in waves. "Ignorance is bliss, right?" I would say to myself. Or, "does it really matter if we know WHY or HOW these neurological deficits occurred?"  The doctor had three possible reasons for OSH's neurological hyper-responses. But did we need to know?

 

Then...the turning point 

This past week we have seen OSH have a difficult time opening a doorknob or holding his Legos in his right hand. He began to say things like, "Mom, this is not my power hand because it doesn't work as well, it is not stronger." 

Queue the heartbreak, heartbroken, heart shattering song.

My son is different. Now, I need to know why.

So in the coming weeks, on a scheduled Friday, our sweet youngest will stop eating by 2am. He will stop drinking by 8am, he will get sedated and then, in the early morning, have his head scanned. To say that I am terrified is an understatement. Will there be complications with his sedation? How will his lungs do as he is "under?" How will he manage not being able to eat? Will he be able to handle the noises of the hospital? And on and on it goes...

And...only one parent can go. I so badly want to be there with him; however, Daddy stepped up to fill a spot that I think I would otherwise be too emotional to fill. So what then should be my response? 

PRAISE, TRUST, FAITH and HOPE that our little boy was created FOR and BY God. In his life, God will work all things out. So, I *try* to put my fear aside and embrace this opportunity to display God's unrelenting love to our son and to the watching world. Because God has made us all unique, our own kind of normal to show the world just how GOOD God really is.

Please join us in prayer.

Growing in Faith: Identity Confusion

Has your head ever spun around as you scrolled through several media sites or read varied articles stating multiple opinions about our nation or world or even how YOU should live your life? Everyone has a different idea about what is right, about what is true. Everyone has something to say about EVERYTHING. It is confusing. What should I believe? What do I believe?

What do you choose to believe? By what filter or lens do you view your identity? 

In Matthew 16, Peter was faced with this same challenge. The question of the time: "Who do people say that the Son of Man is?" (v. 13). Opinions varied, thinking Jesus might be John the Baptist or Elijah or Jeremiah or one of the other prophets. 

But in a direct address, Jesus comes to Peter and asks, "who do you say that I am?" (v.15). 

In that moment, Peter had to decided. Peter had to declare. Peter had to not only form and settle on his belief...but say it out loud! (Would he be ridiculed, outcast for stating his opinion? Would he be harmed or shunned for his belief?) Scripture doesn't afford us the inner thoughts of Peter in this moment, but what we do see is Peter's words:

"You are the Messiah, the Son of the living God." (v16)

This bold proclamation was followed then by Jesus revealing to Peter who Peter was, what Peter was made to do...Jesus revealed Peter's identity and purpose.  Peter was then blessed; Peter would become the cornerstone of the church. Jesus revealed Peter's spiritual gift. BUT--- this only happened when Peter turned from the naysayers of the world, turned off the media (so to speak) and turned to God...only when Peter stared Truth in the face and responded in faith. 

Are you seeking to find your identity based on the beliefs of this world? No news poll, news article or social media post will ever reveal your true identity. We MUST go straight to the source, form and settle on our own beliefs (based on God's Word) and say them out loud. I have found when I say something out loud, it somehow becomes real, tangible--no longer a thought swirling around in my mind. 

Will you be bold enough to ask Jesus about your identity...the life He has planned out for you...JUST YOU!? Are you able to behold and believe the Prince of Life when He calls you to perform tasks outside of your comfort zone? When will you proclaim, out loud, to others that Jesus is the Messiah, the Son of the living God? This, dear friends, is our mission in life...to glorify God and seek Him above all else. When we do, our identity will be found and our opinions will be made based solely on the words of Scripture. Be bold, dear friends. Step into the greatness God has created for you.

 

 

Growing in Faith: Witnessing a miracle

Have you ever witnessed a miracle? In my time on earth I certainly have seen a few but in my passage reading today one stands out. It relates to Jesus feeding the crowd of 5,000+ and the crowd of 4,000+ (Matthew 14, 15).

In these passages of Scripture, Jesus takes a few loaves of bread and a few fish and somehow makes it MORE than enough for the people present...even leftovers. Impossible?

Years ago I attended Bible school in Canada. For nine-months I lived on an island with my fiance (and 120 other students from around the world) studying ~85% of the Bible. We participated in daily chores, housekeeping duties, grounds maintenance and once per month outreach activities. During my time there, I participated in a outreach at a local mission. We conducted music for Sunday service, helped in the food bank and on occasion served warm food to our sitting patrons. It was an incredibly humbling and enjoyable act of service. 

On one particular night, a local church was providing the hot Friday night meal--- Chinese food. Boy, it smelled delicious! The weather outside was less than ideal. Dumping rain and frigid temperatures brought in more diners than the normal 100. I forget the number now, but I think the number of people who came for a hot meal was over double than what was expected. The big question: how were we going to serve ALL of these people?

As servers, with hot food dished on paper-plates in hand, we ran back and forth from the kitchen to the seated guests. We had to inform the diners that only one plate of food could be brought out/served per customer (which was not the normal custom). There were many disappointing faces yet they understood. About half way through the night, my fiance and I went once again to check on the food supply. More and more individuals were filing in, needing a free hot meal. 

To our astonishment, the silver trays of Chinese food never when past half empty! We began to serve seconds and thirds. More and more people continued to seek refuge from the cold...AND THERE WAS ENOUGH!  Before our eyes, we witnessed a miracle! No one was "sneak cooking" or adding to the already prepared food...there literally was no more food to give. Yet God, SOMEHOW, made it enough!

To this day, I have NO IDEA how this even happened in practical terms. It literally happened before my eyes and I am still stunned. At the end of the night, there was more than enough food for ALL of the volunteers AND some food leftover as well. Amazing. 

This story reminds me that God will always provide! He does this in unexpected and surprising ways and in the end, all He asks is that we give Him glory for the work He has done.

What miracle(s) is God working on in your life right now? How might you be able to bless others because of the ways God has provided for you?

Amazing, isn't it?