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 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 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 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: Today was an "opportunity"

....yes, an opportunity. I am striving to refrain from calling it a setback or hindrance or a difficulty. I am in the process of re-framing my mind to seek joy and gratitude above all else.

The opportunities today were:

• Trust God
• Be vulnerable (crying in about three or four different conversations...I mean the  not pretty, ugly cry)
• Remind myself of my true identity in Christ
• To believe in my kid(s)...NO MATTER WHAT their actions may display
• PRAY (like crazy)
• Seek support

I am sure there were many more opportunities in my day as I cared for Oliver and the other two. It was an "opportunity" type of day. Not many days lead me to tears but today, I finally broke. At school drop off when a staff member asked how I was....I just started to cry. When I picked up our oldest and Oliver was "being Oliver" I just about lost my mind...no really. I fought back tears the whole way home (about a 25 min drive!). It was a tough day. The emotional build up from Monday and this icky sickness that is clouding my mind, making it foggy, just put me over the edge.  I know there will be hard days. I know there will be huge successes. And above all, I know that God is in them all. He has put me here to bring Him glory. He has made me Oliver's mom to refine me and draw me closer to Him. He has allowed these circumstances so that I can encourage others who share similar stories. This is all good...but today, I faced many opportunities. :)

OSH was so cute today. I gave him a purple rice "heat" pack, thing (weighted). He carried it around all morning calling it his "dinosaur." It was pretty adorable. Someone had sent the rice pack to Oliver's NICU room in Seattle as a gift for me, to help with the healing of my c-section. It is amazing that Oliver is now in possession of this precious and useful gift. A perfect picture of God's foresight. He wore is glasses all morning (with the tape on the inside of each lens) without taking them off! Huge success! He did pretty good at walking up and down the stairs today alternating feet (working in his bilateral coordination and strength). Reflecting on these things, it was a good day.

Why is it that it is so easy to focus so much on the bad or the hard? Dwelling on what could have or should have been? Or on the things that we simply just cannot handle?! But God is so good as He shows us His tender love as we process through these big and small events, reminding us that our identity is not in our circumstances. It is not in what has happened to me (or those around us). We should solely fix our eyes on Jesus, the author and perfector of our faith. In that, our circumstances look different. In light of spending eternity with God, these "opportunity-type days" are just that....an opportunity to put into practice all that God is calling us (me) to be, all He is and has taught us....We are His beloved. Loved by our Creator despite what is/has happened. It is an opportunity to extend to ourselves the Grace the Jesus extends to us....to accept it, believe it.

So yes, today was an "opportunity-type-day," but in today, I saw/felt so much love extended to me as I poured out my heart to others, sought prayer and was reminded of my real idenity in Christ. What a blessing to have a compassionate community who loves Jesus and each other.

Praise be to God!

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: traumatic event-anniversaries

I am suppose to be working right now (two kids are in preschool and the nanny is watching the other) yet all I can Google is "how to deal with traumatic events" and "traumatic event-anniversaries." Why can't I just get over it already. I am done processing, re-living and re-hashing the details two years ago....but I am compelled.

I prayed that Jesus would just sit with me and let me cry on His shoulder. Maybe that is just what I need? It seems so silly in many ways...our son is fine. I am fine. We are fine. I just don't understand why these emotions are so big and so real and so in my face.

I need to focus. I have a million things to do this week. My mind is full.

April use to be my favorite month...my birthday month. I am privileged to share this birthday-month with my youngest son but now the first few weeks (or more) of the month are spent dealing with the grief of the traumatic events two years ago. I don't even care much about my birthday any more but rather just want it to pass so that we can move into May...the "happy month."

It is a weird season where my head and heart don't agree. It is a season of contradiction and unexpected emotions. It is a season that I feel I burden people with my story---does anyone even care? Are people tired of me bringing it up? Tired of me talking about the same old story over and over? Maybe these are untruths but it is my fear in my grief that cause me to not want to talk about my story. I don't want people to "feel bad" for me but rather join me in the journey. I want people to ask me about it...to ask and listen with genuine care. Yet, again, I don't want to burden those around me with another "sob story" with a happy ending.

I am thankful for a place, like this, to express my raw emotions. To process through. A place to put my thoughts and a place to ask for prayer. I am not even sure if anyone reads what I write but for me, it is important to share this journey. Many others, I am sure, have experienced these same emotions to a degree. You are not alone. Jesus is with you! I am sure there is a community eager to hear your story...so share! Find a way to share. YOUR story is important. Your story is not who you are, your identity) but rather a part of who are are becoming as these events shape your actions. So who ever is reading this, leave encouraged. Leave knowing that none of us are alone. Leave with the love of Jesus resting upon you for HE is the great healer. HE will redeem these "icky" moments and make them glorious in His own way (only if we allow Him).

In peace and trust-
~B~

Growing a boy: My son was so close to death today

Today at 9am, marks two years since the life saving lung-removal operation for our son. It is an emotionally charged day. I woke up this morning anticipating that this day may be hard and recalled, "my son was so close to death today. Today, he was as good as gone." Whether that was the truth or not (since I am clearly not a medical professional but rather a heart-torn mom), those were the thoughts that crossed my mind two-years ago and remain with me. Today in church, they played the song that I heard on the radio the day I was driving down to bring our son home...tears. They played a song about the air in our lungs--which God clearly GAVE Oliver...tears. Tears being reminded of the painful moments leading up to surgery day. Tears of joy when we heard our son made it through surgery and was doing well.

On the outside, I may appear well but inside my heart is breaking and mourning. I remember almost every detail of surgery day so clearly--how I felt, the weather outside, what I wore, the "trolley" "comfort cart" that came to visit us in the waiting room during the surgery. These powerful, humbling, sad moments are still present. I remember watching the clock wondering when we would hear anything about our son's surgery progress. I remember searching for the same word over and over again in my "word search" unable to focus. Moving forward to present...

How do I reconcile this day that happened two years ago with our son's now amazing progress? Today he is happy, mostly healthy (besides the colds that rattle his chest) and meeting many of his adjusted-age milestones (besides fine motor skills).

I DO NOT want this season of his life--his amazing birth, life-saving surgery to define him, to become who he is BUT....but, it will forever be part of my journey. How do I process these events, these milestones without projecting them on him? The day I was admitted to the hospital in the end of March; the day we learned he had hydrops; the moment we were told he had 50% chance of survival; the day he was born and the horrific unknowns that were laid before us. How do I deal with days/milestones like today--surgery day-- and his upcoming "breathing day" when his breathing tube was removed and he cried for the first time? These moments are part of my journey (and his too) but I just don't know how to handle them...where to put those emotions. How do I "celebrate" them without these moments becoming our son's identity?

Over time I am sure it will get better. I certainly try not to dwell on this past history but somehow my body remembers and my mind quickly catches up. My body reacts to things like my daughter's dress I was trying to donate, which is clearly too small, but I just couldn't bring myself to donate...why? It was the dress she wore when she visited her brother for the first time two-years ago. So, the dress remains hanging in her closet. Weird and strange things like this pop-up unexpectedly. I guess it is part of the process. This season set aside, we are doing well. Outside this concentrated few months, we hardly think about the details leading up the this day. But in this season, we are brought back to the place were God did a miracle...where God heard us and answered our prayers in astounding ways. I am thankful for this hard season of reflection because how could we NOT praise God for what He did? It was only by His grace and favor that our son lives today. We were ready to accept that our son would be with Jesus but God had another plan. It is a reminder of how close were were to HIM and how HE desires us to be close with Him like that in every day, in every season and in every way. It is convicting; it is good and it is a blessing to have this day--surgery day--to point is all back the the Creator. He truly is in control of life and death and today--two years ago--He choose LIFE for our son. I will forever sing HIM praises for this and share this story of God's great love and great intervention.

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

Resist & Enjoy: A new kinda hard

Our schedule is back to full-swing, so to speak. All of our obligations have occurred at least once and we are on our way to a "normalized" routine (although every day still looks different).

Last year was one of the hardest of my life, filled with doubts and unknowns about our youngest and the stress of keeping up with work and life while raise two other toddlers.

This year we enter "pumpkin spice" season with a very new toddler at 1.5 years, an almost 3-yr old and a 4-yr old. Busy and overwhelming to say the least. I sit on the floor today almost in tears, feeling as if I can't keep up with these little treasures and work and maintain a household and a life. Not sure what to do, I bury my head in my hands and pray. What we "should" be doing is playing outside, enjoying the last few glimpses of the sunny weather. Guilt over takes me. But why?

I feel inadequate to the mother of these children. Words escape me when they need them the most and my tired body drags through the motions of lunch, dinner, bedtime...you want PB&J for lunch an dinner? Sure! That fits into the "healthy" food category, right? These things seem to matter less and less to me. Guilt again...because I SHOULD care about heathy, well-balanced meals. I try.

The days before us are busy but God is faithful. He is adequate. He has allowed me to mother these children. I cozy into Him for His extra grace, gentle pat on the back and a moments relief from the tantrums and toys being thrown around me. Thank you, Jesus, for my life! It could have been so much different. We could have only had two children, not three. I could be unemployed. We could not have a church or a place to live or..... this list of gratitude runs deep. So, here is to living life FOR Jesus and WITH Jesus, embracing the hard times and rejoicing in them. This season is just a new kind of hard but I am so grateful for it. May He get the glory. Amen.

Resist & Enjoy: What does "important" mean?

It's not yet halfway through September. The schedule is full, I am forgetting things and the rhythm of rush has pushed through my front door (Man! I thought I locked it tight!). So here we are. FALL.

Swimming, ballet, gymnastics. Work, dating my spouse, playing with my kids, friendships, exercise. Bible study, ministry leader, personal quiet time. Planning dinner, planning activities, planning....planning....planning.

But it should. be. different.

"Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is--his good, pleasing and perfect will." Romans 12:2

On a Sunday not long ago, our pastor pointed out that Jesus was never in a rush. Wow! How powerful! What can I do my life differently, like Jesus?

RELATIONSHIP. FOCUS.

In my personal study time today, here is what God revealed to me about His way: 

"How do you know what your life will be like tomorrow? Your life is like the morning fog—it’s here a little while, then it’s gone. What you ought to say is, “If the Lord wants us to, we will live and do this or that.” Otherwise you are boasting about your own pretentious plans, and all such boasting is evil." James 4:14-16

By spending TIME with Jesus, He can renew my mind. When my mind is renewed, I will no longer stress about all of the planning but rather rejoice in TODAY...after all, that is all we are promised, right? Wow does that change things just a wee-bit, huh?

I am also seeing this concept of time in a different way (living in today) when my daughter started her second year of preschool. Driving her to her first day I realized that one-day, not far off, all three of my children will be in "all-day school"......!!!!! Wait?! WHAT? In just a few years? THE DISHES CAN WAIT! I only have 1,095 more days until my three kids are in school?! Three years. It's not much time, regardless on how big the number looks. My 4-year-old proved that. So, priorities. 

What matters?

RELATIONSHIP.

As my handsome husband says, "The important stuff will get done." I think I have misinterpreted the "important" for the tasks of life. Focus. Focus! FOCUS! My relationship with God is of the utmost importance. My spouse and children are of the utmost importance....

Let's pause. Invite God into our heart and mind. Focus. Intention. Fellowship, Friendship. The important stuff will get done. We just need to re-prioritize what "important" means.

Live in joy today (and always). 
Peace.

Sabbath Summer: The Fleeting Sun

The time is approaching. Our Fall schedules are once again filling and the rhythm of rush is pounding at our door. In many ways this summer has been a dream, a vacation from expectations and a mental re-set. A time to listen to God's convictions, seek deeper friendships and enjoy my kids without the pressure of work or mounds of pre-planned activities. Our family schedule was filled with slow, easy wake-ups, breakfast for dinner and extended bedtimes to enjoy just a little more outside play before the sun set. Certainly a breathe of fresh air.

Now, today, we get to make a choice. Will we open the door to the rhythm of rush or will we fight back the loud bangs on the door to strive towards this life of sabbath--- rest and peace.

It seems like an easy decision, right? But as the days tick closer to September the banging gets louder, activities increase and it seems everyone and every activity to teeming at your door. So, what do you do?

GO. TO. PRAYER.

In prayer, our family has been asking God these questions:

• What is YOUR desire for our family?
• What activities will bring us closer to YOU, God?
• What decisions about schedules will teach and display YOUR love through us?
• What boundaries do we need to create to protect our hearts and minds, reserving them first to GOD then family then everything else?
• What can we eliminate in our life that will allow us to be more present?

The reality is: our life is HIS. My life is not about pleasing myself or doing all the things "I WANT" to do (because they seem fun or easy or just because 'everyone' is participating). The things God calls us to can be hard, uncomfortable, unfamiliar. AND this summer I have learned that that is okay.

In the beginning of this Sabbath Summer I sought to change my thinking about life, my relationship with God and friends and find satisfaction and gratitude if what God has given me. Overall, I feel this mission was a success yet in other ways God still needs to change my heart.We are all in process, after all.

Through this journey I have learned much about myself (some icky and some great things). I'm looking forward to seeking God more, asking Him to establish my life. Moving forward I pray for motivation: daily prayer, daily scripture reading, continuing to love my husband, kids and friends best I can and be motivated to have better eating & exercise habits. I pray for HIS strength to hold back the loud bangs and unending pressure of pursuing activity over relationship--to be more present and enjoy the gifts of this Garden of Eden. But in order to enjoy the garden, we must resist the off-limit fruit. Whatever that off-limit fruit is--- RESIST IT! God has so much more, so much better for us.

So...here is to FALL INVITATION: Resist and Enjoy...accepting God's decisions for my life rather then setting my mind of the earthy, temporal things that only leave fleeting satisfaction. Join me?

Growing a boy: Balancing Needs

Nothing went right this morning. Our voices were aggressive, our minds reeling, our emotions swirling. It started to sprinkle, the coffee shop we went to as a family was closed for renovations and we ended up taking all 5 of us to Oliver's (somewhat unnecessary) appointment...mind you after he did not get a morning nap AND during lunchtime (in which we failed at packing the kids proper food...thankful I grabbed a few carrots, oranges and cheese sticks on the way out the door!).

It is not emergent, not even "super" urgent but certainly necessary to get answers....our son's hip x-ray. Thankfully, even before we stepped into the doctor's office, the x-ray was already ordered (a referral is required from his primary care doctor) and our visit was quick, not even seeing the doctor. We should be receiving a call tomorrow or Monday from the orthopedic doctor to schedule this required x-ray.

In the meantime, we are making room in our schedule for every Saturday pool physical therapy. Yes, pool therapy and clinic therapy...every week.

******
I sit here while all three kids sleep, eating leftover salad from last nights dinner out of the large metal salad bowl (why dirty another dish, right?). Looking outside-in, this really does not seem like that big of a deal..."Really? You just need an x-ray and PT one to two times a week? What is the big deal?" If it was someone else, I might not see or understand the implication of this...the shuffling of schedules, the developmental delays of our son, the emotions/feelings from the 15-month journey to the stress of not knowing when/if our son will be able to walk or how well he might be able to walk. It is scary. It is stressful. There are many unknowns. How do we balance his needs with the needs of our other two? I feel like we either focus completely on him or completely focus on the needs of the "bigs." Where is the balance?

Like a recent Sabbath Summer post, it requires patience and time. I read the first part of Psalm 18 this afternoon. I was reassured that God indeed hears us when we pray AND he will defend us, protect us, led us, give us what we need and show us His faithfulness. So God, please show up, like you have in the past. May our hearts continue to strive towards you. Be in our marriage, in our relationships with all three of our kids, in both of our jobs, in our friendships. God, we need you and can't do this without you. Amen

Growing a boy: Invitation and Response

I received an invitation today. I pondered it swiftly. Reflected on it briefly and then....I responded. I wish I would have taken a moment of prayer, a sigh inviting Jesus to control my emotions. I did not.

In the moment, I allowed the situation to over take me, to alter my otherwise relaxing moment. I was inconvenienced, stressed. I took on the weight of the conversation as if it were life and death. My mind went to the worst case scenarios, my own failures and how, at some level, it was all "my" fault.

Yet the psalmist writes, "So I have looked upon you in the sanctuary, beholding your power and glory." (Psalm 63:2) And in that place, in the inner most sanctuary of the Lord, there is peace, rest, resolve and hope.

The news, the invitation in which I could choose my response: our son is not progressing in physical therapy and now needs a hip x-ray as well as increased PT appointments...JUST when life seems to be under control, manageable and almost fun with three toddlers. BUT--- does this new diagnosis need to change that? No.

My kids are still the same. Nothing really changed from yesterday to today yet my perspective somehow shifted to this place of burden and negativity...thinking, "just one more thing to squeeze into my day."

Of course, I WANT our son to be healthy. I want to give him the best opportunities available. So, I go to the Lord in prayer:

Psalm 62:1 I wait quietly before God, for my victory comes from him.

Change me, Lord. Heal our son. Give me a perspective greater than mine. 

Growing TWO boys: What is a gentleman

I have two boy, 15-months apart. Wow, huh? It sometimes even surprises me. As these boys get older, I desire to teach them how to be gentlemen. This looks vastly different (in some ways) than it use to look but regardless, I began a small-ish list of things I want to teach my boys. What am I missing? Can this really be achieved? I'm interested in your thoughts.

A Gentleman (in no particular order):

• To have fun but not at the expense of others
• Stands by his word: his yes is yes and his no is no.
• Knows that no means no
• Lets ladies go first: holds open doors, offers his seat, allows her to order at a restaurant first, considers the needs of others above his own
• Is willing to be/go last to allow others to go ahead of him 
• Makes decisions confidently and with much thought
• Is honest, truthful--not leading other on
• In conversation: Asks interesting questions, learns how to listen without interruption
• Gives eye contact when speaking or when being spoken to
• Understands (and executes) being well-groomed/taking care of appearance
• Knows how to cook and conduct normal household chores
• At the table: knows table manners, says please and thank you, allows the women to be seated first
• Pays attention to the small details
• Is friendly and respectful to everyone
• Recognizes that character is more favorable than position
• Knows how to offer an introduction in social settings
• Can critically think/problem solve 
• Excuses himself from a table/social setting to blow his nose or take a phone call
• Takes care of what he owns: appreciates it, fixes it, puts it away
• Offers to help those in need--whether it be to life a bag into a car or purchase a hot cup of coffee to the homeless on the street.

This list seems lofty, doesn't it? I have been thinking a lot about my boys and how I can best serve them as their momma, I want them both to be passionate and kind. To be gentle yet fierce. To be respectful and fun-loving. I want them to stand out in personality because of their thoughtfulness. Yes, these are lofty dreams for my boys. They both have such different personalities that I am not exactly sure how to even teach them these things. In all honesty, they are just 15-mo and 2 1/2 years old. I am not expecting brilliance but I do require respect. It is hard to find a balance between fun and respect, rule and joy but the more the boys follow to the basic rules, the more joy they seem to have. I delight in the challenge to help my boys become gentlemen. It is through writing lists like this, making it concrete for myself, that I can encourage them in small ways towards this end. It is an exciting and overwhelming task but as their biggest fan, I will be with them with encouragement and love every step of the away.