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 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: 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 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: I give up

 I am right in the middle of my 3rd basket of laundry..sort, fold. Sort. fold. I have a deep desire to just "skip it," walk away and leave the task unfinished. Every morning, our dishwasher gets unloaded. I think, "does this really matter? I can just leave the rest for later."

Never in my life have I had such compelling thoughts about not accomplishing these daily tasks. I am not sure why I am experiencing this struggle, now, at this moment in time: stress, lack of sleep, feelings of being overwhelmed maybe? Regardless, I have to fight the urge to give up. I have to press on. I have to give myself a pep talk about the benefits of completing such (minor) tasks. 

This morning as I was struggling with the morning routine of unloading the dishwasher, I remembered this verse: 

^{Colossians 3:23-24}

²³ Whatever you do, work at it with all your heart, as working for the Lord, not for human masters, ²⁴ since you know that you will receive an inheritance from the Lord as a reward. It is the Lord Christ you are serving.

 A shift of focus, from the Holy Spirit. Yes, these tasks I do unto the Lord! Sure, my family benefits from them (and so do I) but that is not my primary audience. I do these tasks for the Lord. I care for the possessions HE has given me (and my family). Today, I will think on this verse more. I will choose joy while I work on such minor tasks; I will persevere through them with a different attitude because my heart is now working for the Master of my life.

Are there tasks in your life that you need to perform for the Lord rather than human eyes? Are you seeking human approval for a job well done or seeking the inheritance of heaven? Whether it be parenting, completing spreadsheets, delivering packages or simply doing the laundry and the dishes, God wants to be the center of it all. We should seek His best. We should seek to please Him over seeking the approval of others on this planet.

This day, comitt your tasks to the Lord. Accomplish them for HIM and Him alone.

Maranath.

~B~

Growing in Faith: When I worry

I had to confess last night to my husband. I had to put into words what my heart and mind were struggling with. After pondering, I knew I had to vocalize my....worry.

Yesterday was a hard, HARD day for our nation. The act of domestic terrorism is appalling. I am not writing this to start a debate, but rather, as an exercise in looking at humanity. No matter what side you stand on, where is the moral ground?

I worry. And at times, I am afraid. 

COVID, my husband, children, our nation, my home, finances, war, death. 

These are just a *few* worries and anxieties I have...there are others like schooling for my children next year, protecting our new flock of chickens (two of which have already died) all while trying to "hold it together."

In Scripture, I am reminded, "don't worry about tomorrow because tomorrow will worry about itself. Each day has enough trouble of its own." (Matthew 6:34)

I sighed a cleansing sigh. I breathe a refreshing breath. 

My Heavenly Father knows what I need. He will sustain me, take care of the details and heal my heartaches. Even when I am tempted to sit in my worry, He pulls me away. He has better for me.

As a result, I need to change my focus...not on all of the areas of my life that are hard or frightening but rather on His kingdom. For it says, "But seek first the kingdom of God." (Matthew 6:33). When I do this, I have confidence, from Scripture, that He will provide for my every need.

Cast your worries upon Him. Confess your worries and anxieties. He will do more than comfort you, He will make a way for you in the wilderness of this life and provide far greater things than you could ever imagine. Rest in Him today, and the next day, and the next day after that. 

YOU. ARE. NOT. ALONE.

Growing in Faith: That is just too far....

That is just too far.....

I hear this from my kids all of the time when we are biking or hiking (especially on a new, unfamiliar trail). "It is too far." "Where is the end?" "Is it time to stop?" "I'm tired (even though we just started)."

Although is it not quite the same, in Matthew 5:38-42, Jesus calls us to walk the extra mile, go beyond what is requested, asked or demanded of us (whether it seems unfair or not). ...to go beyond what is expected or necessary. 

I am overwhelmed at this thought. "What, God? You want me to DO MORE?" In a season where I already feel burdened, I couldn't imagine stretching myself any more than I already am...but:

I do not believe this is what Jesus is asking of us. 

In context, Roman soldiers could demand any Jewish citizen to carry a load such as food or military equipment, for one Roman mile, as they traveled city to city. It was often forced on that unknowing citizen. It was hard, exhausting and at times excruciating. Why, then, would Jesus state, "And if anyone forces you to go one mile, go with him two."

After prayer and reflection, here is what I came up with:

• As believers, we are called to highlight God. (When I worked in the corporate world, we called it "surprise and delight the customer"). Since going the second mile was uncommon, it would call the Roman solider to inquire as to why the citizen would voluntarily offer such a painful task.
• Going the extra mile displays generosity and expresses a deep unconditional compassion.
  
• Jesus calls us to take care of those around us. By taking their burden, even for just two "short" Roman miles, we are giving space for God to work in their lives in a different manner.
• We are to respect authority (even if we do not agree) and at the same time challenge authority, in a productive and meaningful way.
• Going the extra mile allows us to build (unexpected) relationships though shared experiences and otherwise uncommon connections.

If I had more time (and I wish I did), I am sure I could ponder this thought more. But work and children are beckoning....so, I will leave you with this:

How is Jesus calling you to "go the extra mile," remembering that it is not *doing more* or *adding more* to you list, but rather taking the opportunities presented to you daily as a means to glorify the Lord?

I challenge you to read this short passage for yourself in Scripture, asking God how you might apply this practice of going the extra mile. Is is easy? NO. Is it worth it.....ALWAYS.

 

Maranatha.

~B~

Growing in Faith: January 1

 January One. New. Fresh. Possibilities. Goals. 

I have never been one to fully embrace all that January 1st brings...such as resolutions: losing weight, spending less, etc. But after a very unexpected 2020, my priorities were revealed (rather lack of priorities): my faith, my marriage, my children, my health and friendships. On the outside looking in, I would have perceived that these items were true priorities but in actual practice...they. were. not. There were certainly aspects of each item listed that benefited from my attention yet my heart....my heart was too distracted---distracted by media, comparison, busyness, my stuff (physical possessions) and the like. I am thankful for the events of 2020 because in the unexpected--- change came: growth, awareness, deeper connection and renewal. These are the things I strive towards in 2021.

At the risk of sounding cliche, I am making boundaries and goals to strive towards in 2021 (most of which I have already started acting on long before the glittery ball dropped in NYC). My handwritten vision board was crafted at our homeschool table with faded Crayola felt-tipped markers on a wrinkled piece of odd colored computer paper. My daughter drawing her own goals for 2021 while my husband was at work and our two boys slept. One "bubble" read: read more scripture. (If you want to know the others, feel free to ask!).

And so, I searched. I sought a New Testament Bible reading plan for the year 2021. To no surprise, I found one quickly and easily. I pulled out the cream-colored card-stock and printed the bookmark-sized reading-guides, placing them in my new (IN) CSB Bible. All set...

I was so excited, I actually started yesterday (knowing there would be days I fall behind in striving towards this goal). And today, I learned I have to think of my time differently. I MUST capitalize on those moments my three young children are playing so nicely together and the house is quiet. I MUST develop a better routine and stick with it. I CAN use my noise-cancelling headphones and sit at the kitchen table while the kids run around and play so that I can read God's Word. These concepts are new to me (although I have taught them to my students for years and have {at one time} practiced them). 

A. NEW. SEASON.   

DISCIPLINE. CREATIVITY. PERSEVERANCE.

So, what did I learn today (the whole, main reason I wanted to write this blog post...):

From Matthew 1 & 2: Joseph had to be willing to move, at any time, at the Lord's direction.

Coming out of Christmas, our family listened, read and re-read the "nativity story" in many different forms over the December month. I mean, it IS an incredible story. But what stood out to me this time was Joseph...his connection with God, the Father...his willingness to listen and immediately respond. 

As a man, (and a godly one at that) I am sure he had a deep desire to provide for his wife and new child...set up a home, establish roots, be around family for support. Although, those things were accomplished (eventually), it is amazing to think of all of the relationships and possessions he had to leave behind when they fled Bethlehem for Egypt and then later moved from Egypt to Galilee. What incredible sacrifices he had to make to follow God.

This, to me, represents a "missionary lifestyle." What if God called you or me to move...RIGHT NOW..to pursue the greater plans HE has for us? What could I take with me? What would I have to leave behind? (And how would that make me feel?) How would my children respond emotionally to this swift change? How would we provide for our family? Where would we live? What would come of relationships with family/friends...how would they respond to a decision to move the family for the sake of following the Lord? As of now, what physical possessions or relationships am I unwilling to surrender to the Lord?

All this has lead me to continue to simplify my physical possessions & be *more* ready to respond if/when God calls our family to a new place. Now, don't worry...God hasn't called us...but shouldn't we all live that way...as if He has called us...unattached to the things of this world?

Interesting thoughts on what Joseph may have felt as he led his family based on a few dreams from God, the Father. WOW! 

Where are you putting your faith? What are you clinging too tightly to? 

SURRENDER.

In this new year, surrender to the Lord. Not for the sake of a pat of the back at the end of the year for accomplishing your resolutions but rather for treasure in heaven for abiding in HIM and following as our Savior directs. What a shift of perspective.

Happy New Year, everyone...Happy New Year!

Growing a boy: We have a PRESCHOOLER! (almost)

Guess...what....

Oliver is registered for P R E S C H O O L !!!!!!!! In the fall, our sweet miracle will join the ranks of academia. Wow. To be honest, these thoughts were far from my mind. I never pictured him with a backpack and lunchbox walking into the school building. I never imagined him sitting at a desk, following instructions, doing science experiments, "writing," cutting with scissors or playing during recess. This is an amazing milestone. I am beyond excited to take those first day of school pictures in September.

We have a few "hurdles" to overcome before preschool can happen and one of those is potty training. We are -- SLOWLY -- on our way to make this happen but overall he is doing okay. When I talk to him about going to school, he is very excited.

Between now and then here is how you can pray for him (and us):

• Potty Training!! The goal is to have him 100% trained by the start of school in September.
• He needs to wear his glasses! (They got lost so we are currently waiting for his new pair to come in)
• Walking up and down stairs (with alternating feet) with limited support (aka without holding onto the rail).

In comparison to his birth story, these things are so so minor!

FUN FACT:  In 2020, Oliver is a Children's Miracle Network "Champion!"

• What does this mean: Every year, 170 local Children's Miracle Network Hospitals identify a “Champion” in each of their local communities to serve as the face for children treated at their local children's hospital. These ambassadors spend their year advocating for the charitable need of children's hospitals across North America.

At the end of the month we will be attending the Children's Miracle Network Summit to kick off this fantastic year. Be on the look out for his picture at your local Safeway, Costco, etc.

~B~

Growing a boy: When things are good

Hello All (whom ever you are!). I want to thank you for joining me on this journey of musing. I have learned that this blog has created a space for me to process (and grieve at times) as well as remind me of how connected I am (our family is) to those surrounding us. Recently, I was reading blog posts from a year ago. Through this activity, I realized that this space is so necessary for my personal journey. It has brought emotional healing, revelation, tools (sent by you, the readers) and more than anything, it has pointed me back to the Creator.

So in this season, when things are tough but good, I wanted to THANK YOU for always being part of this Oliver Adventure. Oliver has taught us so much about our need to rely on God. He is amazing for showing us that. It has also taught us the love we have for you all. It has taught us to SAY, aloud, what we are thankful for on a daily basis (and on most days, writing it down as a reminder and memorial stone).

Since my last post, we are learning a lot about how to best serve Oliver and his sensory needs. Sensory bins (scoop and dump, scoop and dump, as OSH says), is one of the best "calm down" activities we have discovered. He is learning to self-regulate with the ear muffs and most of the time not even wearing them. I think he finds security in knowing they are there if he needs them. We have purchase "teething" necklaces for car rides and while at the grocery store (this past month at the grocery store checkout he has chewed through a bag of beans, carrots and the silicone lining of a whisk!). Any recommendations for the "best" teething necklaces?! Please let me know. Oliver is thriving with his PT (now a weekly occurrence) and at his surgical follow-up the doctor IS NOT recommending orthotics (which was a surprise to us)! We are on the wait list of OT but are not as concerned about that (yet) since his PT has helped him improve so much. The tape on his glasses (when he wears them) is improving his eyes turning inward.

Now that OSH is 2.5 years, we had his neonatal followup as well. He scored "normal" on every thing. Fine and gross motor, he scored pretty low (but still in the normal range). Not a surprise to us, he scored normal-high for comprehension and verbal. (He literally talks ALL THE TIME...to the point I almost can't drive with him in the back because he jabbers on so much). :)  A blessing, right?

Overall, we are living life! My thoughts and heart have settled since a few weeks ago and we are learning practical tools on how to help him thrive in his daily life. If you would like to pray for him specifically, here is how:

• Healing (he is currently sick & I always worry about his lung -- or lack thereof)
• Gentleness (he has taken to pushing and shoving his older sibling [and even us] out of an aggressive heart)
• Volume (he often screams/shouts/speaks at a yelling tone. As you can imagine, it is difficult to parent, or drive, when this happens and always can get us all riled up)

• Wearing his glasses (recently, he has decided that he just does not want to wear them and as a result, his eyes are turning in)

Bless you all for joining us in celebration & prayer! I hope you have a wonderful week in HIM.

Maranatha 

Growing a boy: Knowing the difference

Learning new things is good, right. (I say this as I laugh). It has been a long time since I have had to study something and then be "tested" on it. This is how I feel as I learn about parenting Oliver in a new way.

My alarm went off this morning as these thoughts challenged me regarding having a child with sensory sensitivity....

What is the difference between:

• discipline vs. redirection (do you disciple? how...without evoking triggers & without going to the extreme of not disciplining)
• "terrible twos" vs. a child with sensory challenges
• tantrums vs. meltdowns

Other questions:

• How do you parent three young kids (16 and 15 months apart in age) with one of the three requiring "different" parenting. How do you handle the appearance of "special treatment" or special privilege among the three kids? 
• With regard to boundaries and expectations: what is Oliver really capable of? We have a raised bar of exception for our children. Do we need to adjust them without labeling or holding back our son? 
• How do we talk about Oliver's challenges without labeling or restricting what he can do? What words do we use to describe Oliver (or do we need to describe him at all? ..surrendering the need to justify the way God made him).
•  What tools can we use to prevent "craziness" at pick-ups or after church service or while checking out books at the library or buying groceries in the store?
• What tools are there for me to emotionally cope as our son has a tantrum/meltdown and is running away from me screaming and not listening?

These are questions that we are seeking answers for. We know there is no manual or easy answer, but, if this is our new reality, how can we succeed, doing the best for Oliver, for our other two kids, for our marriage, parenting and community? So I end this blog with these questions, desiring to honor God in all we do as we embrace this sweet child that God created and made live.

Growing a boy: Embracing & Processing my "sensory kid"

Oliver had a PT and an eye appointment today. He walked around most of the day with his ear muffs on and the eye doctor put tape on the lens of his glasses to help his eyes from turning in (a vision therapy tactic). I have not even asked Tyler how the PT appointment went this morning (maybe out of fear or simply being more overwhelmed than I already am).

I take pause. Sit with my Bible and allow God to wash over me. He reminded me of all the precious words He spoke to me on Oliver's birthday and within the first month of Oliver's life.

• "I giveth and I taketh away. You have to be okay with that."
• Only I (God) am control of life or death.
• Why not you? Why should you be exempt from suffering in this world?

These phrases sit close to my heart today. They take me back to the minutes, hours and days after Oliver's birth. They remind me of God's faithfulness, His peace, during those times. He KNOWS Oliver! He was good enough to show us, just a mere two days ago, another aspect of this amazing human HE has made...He made Oliver JUST for OUR family. This means that God also made me to be Oliver's mom. What an honor and privilege.

My mind wants to take over and dive deep into learning about sensory processing, sensory toys and other tools/techniques. (Not bad things). But today I am reminded that God....GOD....God is enough. Nothing more or nothing less. It is an example (I think) of what is recorded in the book of Matthew, "blessed are those who mourn, for they shall be comforted." (5:4). I need the Lord's comfort today as I process this news of Oliver being a "sensory kid" or "on the scale". (why are these labels so icky to me? What do/can I say instead?!). The "new and shiny" excitement of learning this news has quickly worn off. In some ways I feel devastated yet in others I still hold onto hope (JESUS) for this sweet miracle toddler who was given less than 1% chance of survival at birth. You can't see it, but tears well my eyes as I type. I need the Lord's comfort.

I am forever grateful for April 2, April 5, April 13, April 30. These dates are HUGE milestones in OSH's life (birth, surgery, breathing tube removal and his first homecoming). In May, I wrote a blog "Growing a boy: I'm not celebrating" which ended the first chapter of my processing of Oliver's birth and the first two years of his life. We are now moving into Chapter 2 (or maybe it should be section two). Anyhow, I am SO thankful to have processed much of the first two years of Oliver's life, then had a moment's pause-- a wonderful and pleasurable summer of very few therapy appointments and savoring our new backyard. Now, it seems, we are jumping back into another season of challenge that pushes me/us to rest and trust in the Lord. I pray I can keep this in perspective, process quickly (yet appropriately) and not hinder our other two, older children. I pray I will not become obsessed with this discovery of Oliver's sensory challenges or talk about it/focus on it too much. I pray that I can give GLORY where GLORY is due--that I can share God's faithfulness in the midst of this struggle. I pray that God will remain the forefront of my mind and heart---with every up and coming decision we have to make. I am thankful once again for an incredible medical team who listens to us, takes our obervations seriously and does not judge. I continue to thank the Lord above for each of you who join us in the journey as you pray for us and reach out to us. (With tears **again** in my eyes, I type--- GOD IS SO GOOD! Despite anything and everything my salvation and hope rest in Him! I pray the same for you in your life's struggle. Trust that God is FOR you and if God is for you....who can be against you (Romans 8:31).

Maranath.

Growing a boy: Exploring Sensory

Hello All- As you can imagine, my mind is flooded since yesterday's discovery as I slowly put pieces together regarding Oliver's (possible) sensory stuff.

I have a MILLION questions: "are sensory bins really needed? Why do they help? How do they help? Should OSH wear his ear muffs all of the time? Am I enabling him or creating a dependency for them instead of allowing him to learn how to "cope" with the world around him? (And the list goes on!) I am learning that there is no "user manual" or step-by-step instructions but rather 1) seeking the Lord 2) trusting His wisdom 3) studying/observing Oliver in a new way and finally, 4) trial and error. Even though I am overwhelmed today at what all of this could (and DOES) mean, God provides...and here is how:

My beloved dropped the two older kids off at school so it was just Oliver and I, palling around before my Bible study started. I had to make a quick stop at the grocery store before the meeting. Since the store just opened, and only one other car was in the parking lot, I decided not to give Oliver his ear muffs. In the store, our normal discourse occurred (on repeat, I might add), "where are we going? What's that sound? Did you see it?" (Three common questions OSH asks at least 85-hundred-million times a day (in the words of our second child). I rambled off what I saw and heard and then directed his questions back to him like I normally do. It was a fairly uneventful trip. However, at the check-out line, the woman ahead of me, who also had a young child, started to engage with Oliver. She asked him his name and how old he was. Through the conversation, it came out that she was a special education teacher who teaches "sensory kids." WHAT!?! What providence it that!?! I reached out for her and told her that I needed her input on this recent discovery. We then chatted in the parking lot (while Oliver wiggled and squirmed in my arms). She "KNEW" my son! This (sensory whatever-he-has-thing) is REAL! She said, I bet he loved being outside more than inside. YES! She gave some examples of tools she has used with kids. She affirmed the use of ear muffs whenever he might be in a situation that is loud, busy or chaotic. It was like she gave me permission to not justify Oliver or why he is wearing ear muffs or why he doesn't act like a "normal" 2.5 year old. I felt excited. This is a real life thing. In addition, we have a PT appointment scheduled for tomorrow! I am hoping we can continue to learn more about Oliver.

I still have NO clue on what all of "this" means or how to help Oliver, but it feels so great knowing that I AM a good parent! That Oliver is just not "acting out." He has a real problem and now I can help him navigate towards a solution (or solutions). For me, really, this is life changing! I no longer have to feel embarrassed about his outbursts or his intense personality. I don't have to make excuses for him or explain his whole birth story to prove the point that "he has just gone through a lot." Yes, Oliver HAS gone through a lot but I am so thankful that he is alive. He displays God's character is so many ways. It is my privilege to teach him how to emphasize those amazing attributes. I am blessed ... SO BLESSED... by all of your loving feedback, prayers, ideas, podcasts, and acknowledgement. This new discovery has taken a huge mental toll but I know that we are not alone in this! Keep your advice and resources coming! And please pray for us! I fight the thoughts that I am just "making this up" or "making a bigger deal out of this then I need to." 

I am so, so grateful for every one!

Growing a boy: sensory disorder?

 Oliver has never done anything without grand expression...his gestation, birth and following have proved that. Recently, our nearly two and a half year old has been leading us to question ourselves as parents as we pull every tool we used on the other two kids (and then some) out of our parenting toolbox. Daily I feel like a failure because I cannot redirect or calm our very vocal and "wild" child. And trust me, it is not for a lack of trying!

The beginning of the summer our family focused on learning the Fruit of the Spirit (Gal 5). The Lord must have led me to this because in this trying season I frequently play the fruit of the spirit song in my head, begging God to refine me with patience and kindness towards Oliver.

Recently, I have been so embarrassed by his random tantrums, outbursts and mood swings. They occur out of nowhere....at his big sister's kindergarten pick-up line or the grocery store or even just loading up in the car to go somewhere. Everything seems to be a "big deal" and most of the time it feels like a battle. I weigh my options..."is it really 'worth' it to take him out in public to pick up the milk or can we until daddy comes home so I can run out quickly." I hate to say it (but in all honesty) I need LOTS of breaks from Oliver. I use nearly all my patience and emotional reserves on parenting him (and since dealing with my extremely low iron and IV iron infusions in August, this has become even less in my reserve tank!). Upon going out, I have to prepare myself for the possible glares and stares (and even "helpful" parenting advice) that I know will occur WHEN Oliver has such a fit.

Well, today I **THINK** I learned something new about Oliver which may lead us down a different parenting track (and possibility even more PT/OT appointments we already have....ugh!). But I am excited! Read on...

A year ago November, we moved into our home. We finally made time to tackle unpacking, organizing and cleaning the garage. In doing so, my handsome groom found the child-sized noise canceling ear muffs. The three kids clamored at the new "toy" and took turns using them as they played in the driveway. As I looked up from the stove out into the driveway (Tyler was out there with the kids), Oliver was so happy wearing those ear muffs. Not once did I see him throw a big tantrum (well, until we tried to put them away for dinner). For the last few weeks, at random, my groom would allow Oliver to wear these treasured ear muffs as they "worked" side-by-side.

Today, I had an idea. I wanted to experiment. The library was on the agenda today so I decided to allow Oliver to wear them....in the car, in the library, to the bike shop and into the grocery store. WOW! What a HUGE difference!

Upon entering the library, the librarian noticed his ear muffs (and a BIG muss about the happen) and immediately handed me a sensory box full of sensory toys (something I am vaguely familiar with). A weighted snake, textured balls, and a calming water-oil-upside-down-turny-thing captured his attention at once and he calmed down. I was amazed. Literally in an instant of placing the weighted snake on his chest/tummy, he calmed down. A part of me was a little sad at another looming label...."I have a sensory kid" but the greater part of me was overjoyed to see him relax and settle back into the stroller, looking so at ease and comfortable. He visited the bike shop and grocery store with little incidence and we even had a quick visit with a local police officer. I feel like he "lasted" a lot longer on this trip than previous trips we have taken. In all honestly, I was not expected as good of a day as we had (shame on me!).

So, I would say that today was a huge success. I had to work through the awkward stares that I received when others noticed Oliver wearing ear muffs (and all of the labels that go with that) but I felt like a proud mom today...loving my kid, putting his needs first above others' opinions, taking care of him, listening to my instincts and discovering something new about him. I am now reading up on sensory processing disorder and the possible link to his premature birth. In doing so, I also remembered the weighted bean-bag they placed on his legs while in the NICU and how, at two weeks old, that calmed him down. A whole new world has opened up for me today. If any of you have helpful resources or ideas or tricks we can try please pass them along! I want to feel confident in my parenting approach. My desire is to not need breaks from him but to better understand who God has created him to be and to play into that!

Thanks all for reading and joining us in this journey of raising our sweet, precious Ollie.

Growing a boy: HE SURVIVED

With each passing year it is easy to celebrate the fact that as parents we have kept our child alive for another year. But what is so significant about celebrating our youngest is a fact that he has survived… Against all odds… another year.


Not only is he surviving, he is THRIVING! Surpassing milestones and proving every day that God has transformed his life in immeasurable ways since before his inception. 

It is easy in the season to reflect on the hardships leading up to delivery. It is still emotional but as I reflected on a walk this morning… I was reminded of just how big our God is and how he speaks to us so personally. 

Oliver‘s birthday is a memorial stone for me. A day to celebrate and rejoice friendship, community, family and a God who is so big… So unfathomable... that I just can’t help but leap for joy, raise my hands in praise and REJOICE. 

We go into this second year of life helping Oliver threw a little cold… Using the nebulizer and wondering if his lungs are OK. Wondering how his x-ray results will turn out. Questioning the use of his right leg and hand… But he is laughing, just started jumping with both feet and throws a ball more accurately than his mama ever could. He brings so much joy; making us a family of five. Together in God‘s presence. It is a joy and a privilege to continue this epic journey of parenthood to a two-year-old toddler. 

Today, (the scary day before his delivery just two years ago), I mourn but I also rejoice. It is so wonderful to be reminded of our GREAT God. We give HIM praise for the past two years and look expectantly to the future HE has for this crazy, fierce little boy.

Happy Birthday Eve, OSH.

Growing a boy: Two Years Later

Almost two years have passed since that fated day of our youngest child's birth. This time of year, March leading into April, still holds many emotions for me. I am told that the strong emotions from such a tragic event will ease with each passing year but to-date it still feels fresh.

My mind is flooded with the physical pain my body endured two-years ago (the water-balloon in my tummy that held my sick little boy). I remember the contractions, the weight of the fluid, waddling because of the weight, hardly being able to stand. I remember being admitted to the hospital for the first time: prepping my spring quarter classes from the hospital bed and the relief from the jetted bathtub in the room. I remember being discharged after receiving steroid shots for my unborn baby's lungs and the medication that was suppose to stop my heavy contractions. I remember still not knowing what was wrong with my boy.

Laying on the couch back home, coming to terms with that fact that I would most likely deliver a "NICU baby." The worst though, was the re-admission into the hospital...being told I would not leave until my baby was born (and the separation this would cause between me and my other two children). The words, "Your son has some type of birth defect but we just don't know what it is" still burn in my mind. The nurses who would have to "sit cozy" with me for an hour at a time just to get a heart reading on my son and the final decision....the words, "your son has 50/50 percent of survival." Seriously, what do you do with those words? They still effect me today. I won't even go into the emotions of when his cord was cut and his chances of survive dropped to 1% or less...oh, yeah...and the unplanned trip 45-mintues North my son took (with daddy) via ambulance while I had to stay put and the decision to cut open my son's chest at day 5 as a "last ditch effort to save him." I just can't go there right now.

Nothing about that time two years ago was easy. Yes, I now have a healthy, thriving boy, but his birth still haunts me. The moments of being torn between my son in Seattle and our two other 45-min south in our hometown. To this day I question if I "did it right" leaving one child to be with the other two OR leaving the two to be with the one child. We did the best we could do.

I fight the thoughts/fears that I was not "nice" to our friends or appreciative of them. Was I really a bad friend? Was I ungrateful? Did I express my appreciation enough? Ask forgiveness enough? Push people away or expected too much? Keep everyone in the loop enough? A lot of "icky" feelings surround this period of my life...feeling like I failed-- that I just did not do it "right" (whatever that really means).

It has been two years of healing. Up until his 15-month milestone, our boy still required so much of us medically, emotionally and physically. It really has just been in the past 8 months that he has been a "normal" little boy. EIGHT MONTHS! Not very long, actually (for the first time, right now, I did this math...eight months). What a fight it has been. I still struggle losing my baby weight (which I beat myself up for on a daily basis). I struggle to recognize that I truly did the best I could during this season of life (& whether my best was really good enough).  I struggle trying to parent three children so close in age with the added task of continuing home physical therapy "games" and activities to help our youngest use his right side (hand & foot) consistently.

Life is hard. I know we all have seasons that are difficult and painful events that happen. This season for just happens to be my trigger. I am thankful the Lord is always with me and that HE speaks truth to my heart and soul. Without Him, I would be completely lost. I thank God almost daily for what he did on April 2 and the days leading up to and the days following. It is a memorial stone for me to reflect back on His grace and mercy in my life...how close I felt to Him during that time and how He spoke so clearly to me on the OR table, "Brandi, I giveth & taketh away. You have to be okay with that, okay?" God's words spoken directly to my heart help me have a new view on the life I live. Thank you Jesus that you are my Healer and with each passing year you heal my soul just a little more. Praise be YOUR name forever.  Amen