Growing a Boy: Help Me Sail

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

I have a disabled son.

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

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

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

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

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

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

o   Am I pushing too hard for supports/accommodations?

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

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

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

 

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

 

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

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

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

 

Growing in Faith: Widely Complex Emotions {change}

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

What next?

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

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

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

YOU. ARE. ENOUGH. 

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

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

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

GOD. HAS. YOU.

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

 

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

Growing a boy: 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: 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: 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: 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 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: 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: 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: I'm not celebrating

I am not celebrating! I have given myself permission.

After all the definition of celebrating is "acknowledging a significant or happy day or event with a social gathering or enjoyable activity."

But do all "significant" days really need to be remembered, celebrated?

No, they do not.

I am coming to terms with this.

Over the last two years with Oliver, we have had many significant events and happy moments (and a few not so happy moments). Many of these significant days, happy days even, are joined with hard moments, tough decisions and feelings of loss.

Initial, I wanted to celebrate ALL of them...the day he was transferred to Seattle Children's, his surgery day, the first day I kissed him, the first day I held him, the day his breathing tube was removed, the first holiday we were all together, his transfer day (back to Tacoma), and his homecoming day (just to name a few).  The last two April's I have remembered and recounted every detail from my initial hospitalization to everything listed above to his "fight" today. I realized that I don't need to hold on to these things, these "icky" emotions of these milestones.

I need to take the reminders off my calendar. I need to let go and be present with him and our family. For me, it is unhealthy to dwell on the hardships of his birth and months thereafter. Dwelling on these hardships did not promote healing but rather the opposite. It became my focus, shifting my mood to sadness and anxiety. It closed my eyes to the glories right in front of me (and what glories they are!).

I am not saying that it is wrong to remember...that is why I have about 3-4 Shutterfly books outlining the entire story of our boy. Isn't that enough? The timeline is outlined in such detail. Almost every day of the first two months of his life are recorded. Pictures of his first year of life are thoughtfully arranged. Because of this, my mind no longer needs to dwell on these things. I do not need to keep this information in the forefront of my mind any more (because it is already recorded!).

"Why" is the question that kept popping up in my mind...why did I feel the need to keep these moments, these milestones so close to my heart? Then I realized, putting the puzzle pieces together of my own life. When I was an infant, I had a few surgeries too: one for my back to remove some type of abnormal growth and another which enabled me to see. That is all I know. I don't know many of the details of the things that happened to my body. The technology was different when I was born too.  With many family moves, I am sure these records were lost along the way. I have lingering questions about the surgeries I had as a child. In some ways I think I have been overcompensating for the lack of knowledge of my past by trying to capture every fact, every moment and every "level"of our sweet son. Will he care about these details? I have no idea. That shouldn't be the point. As his mom, I have tried (too hard) to remember these details for him...this is a burden that I shouldn't carry anymore. The documentation is there. I have stacks of his medical records. I have a box full of important artifacts, all labeled in case he is curious and the ample supply of digital scrapbooks.

And that. is. that.

I am releasing myself from the drive to remember, this desire to want to celebrate. Instead, I CHOOSE to live NOW...to see him as he is and not how he was (despite his on going therapy). His birth should not define me or him.

It has taken two years to come to this point. It has taken many conversations, some counseling sessions, blogging and even "celebrations" to come to terms with this. It feels good. As a family, we have decided to have "family day" around the day of his surgery -- not to celebrate his surgery but to celebrate the fact that we are a family of five. We are healthy and we are together (and that is enough!).

Grief, loss and tragedy are "funny" things...no one can tell you, really, how to handle them (even if you ask, everyone has an opinion). The best thing to do is to allow yourself to go through the process, seek help, talk about it and trust your instinct on what feels right to "celebrate" and what does not. It is okay to give yourself permission not to talk about it too (not in a "I don't want to deal with it" way but rather in a "I have moved on and don't need to keep bringing it up" way). So....I **think** this concludes my blog series "Growing a boy." That is not to say, I won't every talk about this super-huge and traumatic life event again, but it is to say that I am moving on. I am healing. I have discovered new things about myself through this process. I have learned new things about God. I have learned new things about how to better serve my community because of this experience. I have a deeper understanding and sensitivity with others who have also dealt (or are dealing) with challenging events with children or family members. For all of these reasons, I am grateful for this experience. Our sweet son has allowed me to learn so much about myself and those around me and now....and now I move forward.

Thank you all for your love and support during this long, hard two year (and ongoing) adventure of parenting a preemie baby (who is now a VERY active and fierce toddler). Thank you for listening, for your words of encouragement and your practical support. Praise be to God for all He has done in our midst. A chapter closed...finally. Looking forward to the many more to come.

Maranatha. 

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.

Resist & Enjoy: When you can't do either

This past week I have not done much "resisting" the rush or "enjoying" the life season we are in. I had great hopes for "Pumpkin Spice" season after a refreshing Summer Sabbath. But...

In plain words, life this past few weeks has sucked (and I don't ever use that word!).

The things I hoped for failed. The relationships I tried to build halted to a stop. Rejection slapped my face at least a dozen times and my children, those little darlings, are testing every bit of everything left that I have (which, to be honest, isn't a lot).

I ask the question with arms thrown to the sky, "God, what in the WORLD are you doing?"

The striping, the taking away, the pruning, the frustration....there has to be a purpose, right?

In this moment, God reminds me of this song "Closer" by Bethel Live:

Pull me a little closer
Take me a little deeper
I want to know Your heart
I want to know Your heart
`Cause Your love is so much sweeter
Than anything I've tasted
I want to know Your heart

I know God's character. I know that He is always at work. I know that His ways are not my ways but in my flesh today I cry out, "WHY GOD!!" In someways I resemble my toddler throwing a fit on the floor and in other ways I have simply just run out of productive ways to cope. We continue to wait, writhing, for God to reveal His plan for our family. In this time, I pull closer to God, not understanding what He is doing but rather knowing that at least He is doing something...even if I can not see it. We trust. We wait. We persevere. We pull back so that we can be plugged into the Source of all Rest and the Source of all Joy...the person Jesus.

Maranatha

Growing a boy: "Just" teething

Every. Single. Little. Thing.

It all seems so complex with our little miracle boy. From a twitch to a cough to not eating enough to eating too much...my mind goes to the worst possible scenario and the worst possible diagnosis.

I am an emotional mess. I shouldn't be, right? This is my third child. But every thing IS different.

Over the past week, our sweet almost 15-month old cut an upper tooth, screaming ALL day last Sunday. Over this week he has had a slight fever, excessive grumpiness and a shoulder-to-ear "twitch-thing" which seemed to progress throughout the day yesterday (I did capture it on video). I was unable to get a same-day appointment so I had to wait until today.

My mind and body whirled as I waited for the time to drop off the "bigs" at Gram-Gram's house so I could have an uninterrupted conversation with the doctor about these concerns. In the meantime, I consulted a few friends and the on-call nurse at the peds office to see what I may have been missing. 

Am I overreacting? What can I do better to help my son? Are these symptoms simply nothing? I hoped to find out.

My 1:50pm arrival time came. Just my son and I. We checked in a few minutes early. The normal vitals were taken. So far so good. The "sick-doctor" on-call was one I had never seen before. She knew nothing of our boy's complex arrival (birth) and his even more complex medical history. I showed her the "shoulder-ear twitch" video (as she half watched it while she typed notes) and I talked about my concerns. Her exam was quick, removing some excessive ear wax from his right ear. The exam did not produce any remarkable results only swollen gums...."It's probably just teething. We get at least one case a day related to this. There is nothing to worry about."

I began to cry. (Why am I crying? Because EVERY, Every. Single. Little. Thing. It all seems so complex with our little miracle boy).

Really...nothing to worry about?!? Do you know my son? Do you know that I thought he was close to death on at least 2-3 occasions? Worry? I worry about EVERYTHING with this boy (despite what the Bible says about this). I worry when he sleeps on his face. I worry that he will have to wear leg braces to walk. I worry about the two cavities he has and how I could have done better at keeping his mouth clean regardless of all of those sugary medications he was on for almost a year. I worry about his oxygen levels when his lips turn slightly blue because he is cold. I now worry about this shoulder-ear twitch "thing" that the doctor did not seemed too interested in. Maybe she is right. Maybe it is nothing. Maybe it is just teething. Or maybe it is more than that. Either way, I must put my trust in the Lord and also trust the instincts He has given to me.

For now, I am exhausted, Our littlest is now sleeping and the "bigs" tear up the house. And here I am, typing. I guess I am just not over what happened last year leading up to his birth and the months that followed. It is a process, I guess I just have to keep trusting the Lord for all of the things He spoke to me, His unfailing promises. And time...and patience. I have to trust that time (whether a few hours, or a few days) will reveal if there is truly something wrong or if it is simply "nothing to worry about."

So...just teething and an emotional, exhausted momma....that is the diagnosis.

Growing a boy: The (un)donated dress

With the amazing weather and three growing kids, it was time to purge excessive toys no longer played with and clothes that no longer fit. It is a joy to raise our kids in a community of friends who have children around the same ages as our three. As such, I sent out a group text to a few of my other "mom" friends, inquiring if they were interested in some pretty party-type dresses our almost 4-year daughter has recently outgrown. I love being able to pass along the blessing of clothes as so many have passed clothes along to us.

I snapped a few pictures and off went the text. No big deal.

The day came to deliver the dresses to my friend who lives just down the street. I folded them nicely, wrapped them thoughtfully, like a present, and put them in the car to drive them over.

A few minutes into my short drive, stopped at a red light, I glanced down at the three dresses carefully and lovingly placed in the passenger seat next to me. Without permission, my body got cold my hands clammy and my breathe shortened. The light was now green. I proceed forward in the direction of my destination with a feeling of panic, overwhelming trepidation and unaccounted for discontentment.

What in the world was going on?!

At the next red light, I peered down once again at that floral party dress. In a brief moment, pictures and memories flooded back into my mind...our daughter wore this dress--the exact dress that was in the passenger seat--when are family was joined together for the first time (all 5 of us), on Easter when our preemie son was just 14-days old and still in the NICU at the children's hospital 45-minutes North of our home.

In such a short time the overwhelming events of our son's early birth nearly 14-months ago and near death during the first hour(s) and weeks of his life flooded my memory.

Pulling into my friends driveway, I put the car in park and just sat there, thinking, processing, remembering. Within minutes I had hopped out of our silver car, delivered two of the three party dresses and climbed back into my vehicle. I immediately texted my friend, who had joined my family in prayer and struggle during our son's early days, telling her that I was struggling to get rid of this particular dress. She was nothing but supportive and kind in her response back (THANK YOU FOR YOUR PRAYERS, FRIEND!!).

A few deep breathes later, I was reversing out of the long driveway towards Target to pick up a few household necessities. Parking the car, I felt these overpowering emotions again. I stuffed them down so I could complete my short shopping list. Two stores later, I found myself sitting in Payless Shoes in the back of the store about ready to have a tear-fest. Really?! Here? Now?

This experience reminded me that grief comes and goes. Its onset comes from unexpected places (a floral party dress) at very unexpected times (at a red light). It reminds me that, although our 14-month-old son is now very healthy, he almost did not survive on more than one occasion in those early first few days of life. It reminded me to have grace towards myself as I navigate this new season of life--having a healthy (almost toddler) in comparison to the uncertain outcome of his life at birth. It reminded me that it is okay to stop, cry, live in the moment by recognizing it and then move on (although this one is lingering a little more that I expected). It reminded me that when I am weak, HE (Christ) is strong. In my weakness, I can allow God to overtake the hard circumstance and just rest...like a babe in his mother's arms. I feel like I did that today in Payless (of all places), sitting on the stool in the back of the store, closing my eyes, taking deep breathes and inviting God to take over...to help me process...to help me accept (once again) the hardships endured at my son's birth. HE reminded me that His promises are always right and always true. HE reminded me that I am in the clutch of His palm, protected, safe, secure, seen, recognized. HE gave me peace. I am still emotional...not necessarily about the dress...but over the events the dress reminded me of...the very first time our family of five was united.

So, I will keep the dress as a memorial stone. I will remember the joy of having my three kids together for the first time on one of my favorite holidays, Easter. I will remember the first egg hunt our big kids did at their cousin's house before we brought our family together in the hospital. I will remember how of first son was so tired after the Easter events that he was fitfully strapped into the double stroller in his baby brother's NICU room. I will remember putting on silly bunny ears and bunny glasses for our first family picture...all 5 of us. This dress is significant. It reminds me of a time of joy and a time of heartache. It reminds me of God's victory in our suffering.

I have a feeling that I will be dealing with our son's unexpected early birth for the rest of my life in varying degrees. And that is okay. I am thankful to our close friends and family who join us in this journey and those who pray for us. Parenthood is never easy. Grief is never easy. We bond together, one day at a time trusting that each day will provide new insight, healing and deep restoration.

Shalom.

Growing a boy: Hearing the Word "NICU"

My miracle baby is almost 10-months old yet at the sound of the word "NICU" I am taken back to some of the toughest moments of my life and begin to cry.

The word send me back...to the smells, the sounds, the stress, the dry hands from the hospital soap, the labor-intensive pumping sessions, the overnight stays at the hospital, the hospital food, the desire to hold my newborn or dress him or hear him cry, the shuffling of our older two kids to make arrangements to be in Seattle.

It reminds me of the stress being back in the Tacoma hospital and the frustrations of trying to nurse...of the painful recovery from a c-section, the sight of volunteer "rockers" rocking my crying preemie because I could not be there all of the time.

The word "NICU" reminds me of the dozens and dozens of people who served not only our son but us as well...their love, compassion, hugs and tissues.

I am reminded of the community that supported us so well by providing meals and practical acts of service.

I remember standing in our son's nursery at home, crying because my son was not home, in his crib, where I imagined him to be.

My mind wanders to the trip back to the hospital once he was initially released...back to the hospital after the victory of the initial discharge was celebrated...watching him stop breathing at home--turning slightly blue, the addition of medication, learning my breastmilk which contained milk could be part of the cause, the addition of rice cereal into his formula.

The word NICU reminds me of all the other struggling parents I encountered whose babies were sicker than mine...those sweet precious ones that passes away from being born too early or had too many medical complications. My heart and mind go there.

I cry thinking about the support from Seattle Children...not knowing how to grasp their level of support and love and care....using every resource possible to save our son.

Maybe I am experiencing post-traumatic stress from these occurrences. But a day does not go by that I don't think about some aspect of our son's journey.

We will celebrate his first birthday in just a few short months and I am beside myself. It is an incredible journey! It is a party of celebration and a thank-you party for all of those who have joined us in this battle! We seriously can never thank you enough.

Learning to See: Is seeing really a luxury?

"Why am I so nervous," I asked myself as I drove to the VT doctor. What I was going to experience was just a normal eye exam… But the results would have many more implications than just an annual visit to my regular eye doctor.

As I anxiously drove to my appointment, almost absentmindedly, I was surprised to see my van (driven by my husband) directly in front of me! I was coming from a grading session at Starbucks (the joys of long hours of grading that finals week gifts me with) and my husband was coming from home with our boys. Our youngest was getting his eye examined first before my appointment.

Meeting up in the parking lot was a blessing...getting to see the smiles on all three of my boys' faces (my husbands included) brought me much comfort and relief. We all made our way into the building, to the elevator and up to the second floor. I was grateful our oldest was still in "pretty" school so that we did not have to manage all three kids.

We were greeted by the same wonderful receptionist I met a few weeks ago. His warmth made us feel at ease as we settled into the waiting room right next to the train table. All four of us sitting on the floor, enjoying the crashes and bangs of the trains competing for space on the little wooden train tracks.  Before long we hauled all of things (and two kids) into the exam room.

I was asked to sit in the dreaded exam chair, holding our youngest for the brief eye exam. Within minutes my husband and I were told that our youngest would most likely need glasses and same with our oldest son. No surprise given my eye history and dominate genes. Soon after this exam, our oldest certainly needed food as it was nearing 11:30 (his lunchtime). My husband left with the boys to get food as well as to pick up our daughter from school.

After they left Then... the real "fun" began.

For many people, getting an eye exam is easy...something not thought about or dreaded over for weeks prior to an appointment. For me, it is torture. It requires concentration. It requires vulnerability. It requires confession that I cannot do or see the things the doctor is asking me to do or see. It requires so much focus that I can leave with tension headaches and tight shoulder muscles from strenuously focusing on the "smallest line you can see" or trying to get my eyes to see double vision (which I can with much concentration and focus and thought).


 So, it began. My current eye glass prescription was measured before beginning the exam, then the real test came. Throughout the exam, I often felt like I was failing.

"Do you see one or two lights?"

"I don't know," I said confused because my eyes (separately) were fighting among themselves for dominance while my mind was trying to convince them to simply do the job they were made to do. 

Early in the exam, tears started streaming. Seriously, who can't tell if there are one or two lights? Sometimes I see two. Sometimes I see one. Sometimes I see two but for a 1/2 second which causes even more confusion. In that moment, my eyes were constantly shifting and fighting against each other. How stressful.

We moved on from that portion of the exam to the torture brought on by the phoropter. My prescription was dialed in and the exam commenced. It started as you would expect a normal exam to begin. "What is the smallest line you can make out." "Can you please read me the letters." "Which one is the most clear, one or two (the turning of various lens strengths through the phoropter)."

I took several deep breaths knowing that "I can do this part." BUT... soon the exam was directed towards seeing things I struggle to see.... "Can you make your eyes see two?" "Are the images on top of each other or side by side?" "Can you make them horizontally align?" "Can you make them align if I do this (switching around the settings on the machine)." I was beginning to get frustrated. The seemingly easy tasks took so much focus that I felt my eye becoming exhausted as if I just had a personal training session at the gym...the first one in 10 years! Imagine that...just from a "simple" eye exam.

As I got through the far away "stuff," the doctor pulled down the chart that dangles just a foot or two (I'm not exactly sure how far away it is) in front of the phoropter. This is the work that is the most difficult. The thick chart had a triangle cut out in the middle. The triangle housed another chart with rows of small letters. At the base (or the tip) of the triangle, a few inches away, was a white plastic screw made for a flathead screwdriver. This screw was much easier for me to focus on than the letters so this is were my eyes first drifted, as my eyes resisted the letters (until I was called upon to focus on them....not by choice). :)

The same exercise as before was requested..."Can you make your eyes see two?" "Are the images on top of each other or side by side?" "Can you make them horizontally align?" "Can you make them align if I do this (switching around the settings on the machine)." This was the most difficult part of the exam for me. Not only were my eyes tired from the other portions of the exam, seeing the chart up close has always caused a lot of visual stress. It seemed like "ages" until this part was done and I was relieved when the doctor pulled the big eye seeing machine away from my face and said we were all done.

He turned from me, typing heavily on his keyboard near the dreaded exam chair. I tried to peak over to see what he was typing but it was all gibberish to me. A short minute later, he swiveled his chair towards me, clasped his hands together, I'm sure trying to formulate the words he was about to give me. I tried hard to focus on every word he was saying. I cannot remember the exact order of the things he said, but here is what I do remember him saying:

"I have been doing this for 50 years. Out of those 50 years, your eyes are the most screwed up I have seen."

"It is not your eyes that are screwed up. It is your brain."

"You have to be prepared that if you go about this, this will be a journey with a CAPITAL J. It is not something to be taken lightly."

"I could see you doing this [VT] for 12-months, easy, maybe even more. Two sessions a week for the first 2-3 months followed by weekly sessions after that."

"There is a possibility of another surgery to correct your vision." 

"We will have to get you seeing double vision on a regular basis first, before we can start working on anything else."

"Your case will be like opening Pandora's box. We just have no idea how you will respond to vision therapy."

"If you would have come 3-4 years earlier I could not have helped you but technology has made it possible!"

The real kicker, after hearing (and trying to process all of this) was the cost:

"It will be about $14,800 for your therapy. Insurance 'may' cover some of it. We always bill insurance. And if for some reason we decided that the therapy is just not working for you, we can refund a portion of that money."

Okay...wow. Talk about having your life flipped upside down within a matter of minutes. I believe that he was speaking in the kindest heart possible and the news was delivered in a friendly and personable manner. I never felt like I was being made fun of. I left the office with mixed emotions...on one side eager to get started and on the other baffled at the seemingly horror that my eyes really are "that bad".... the worst he has ever seen in 50 years. I should have left the office wearing some kind of badge of honor, right..."the worst eye ever over here?" Instead I left the office feeling conflicted and frustrated at the diagnosis. He did prescribe a new power for my glass, which I took directly my my regular eye doctor. I am hoping this will allow me to see better than my current prescription which is still slightly blurry out of my right eye.

I felt overwhelmed (I still do). I don't know what to think about all of this.

Today I received a call from the financial/billing office to discuss scheduling my first VT appointment. Reflecting on the "cost" (or rather sacrifice) that VT would entail, my husband and I are just not exactly sure if the time is right. To be honest, we are both a little hesitant about this. It would not only take a weekly (or twice a week) commitment, it would require time at home to do these exercises. And this does not account for the physical "side-effects" VT may cause as my eyes begin to change.

So, during my chat today with the billing office, apparently the $14,800 cost needs to be paid upfront...UPFRONT. Are you FLIPPIN' KIDDING ME? Yes, let me just reach into my money bag and write you a check. A "perk" of paying with a check...or get this...CASH...upfront is a "5%" discount. HA! Funny. I was given the option of putting the full amount on my CREDIT CARD...okay, I don't know about you but I am not about to MAX OUT my credit card and leave no option in case an emergency happens in my family. That option is out. The third option is like a medical credit card which has no interest for 12-24months (depending on what you are approved for) and monthly payments...roughly $1300/month.

We just do not have that much "wiggle room" in our budget to afford such an expense. Ha. Ha. Ha. It is kinda a joke, right? $14,800 up front and insurance "may" cover some of it. I guess I need to make a call to them?

So here I wrestle.

My vision is what it is. It is what God allowed me to have from infancy. Up to this point in my life, I have done fine. I can do most things I want to do. I am not putting anyone in danger, really, by seeing the way I see. I know my strengths and my weaknesses. I have learned to adapt. Cosmetically, I know it can be hard to look me in the eyes (especially when I am tired) because of my wandering eye.

The other part of me is curious, like a scientist on the verge of conducting a monumental experiment...wondering, if I don't try then I will never know.

Regardless of my curiosity, I think the actual dollar cost has won out and has made the decision for us. If I am not in danger, if I am not endangering anyone else, then this is simply a luxury. A luxury that we cannot afford. So my journey, it seems, has ended almost as abruptly as it began. I am still the same me, yet with a deeper understanding about a part of me that has remained hidden from the public for many years.

So, thank you for joining me in this journey of exploration. Maybe one day, I can continue this portion of my blog, "Learning to See." Until then, I will "SEE" you around...not sure whether it will be with the left eye or the right one, but I will see you.

~B~

Learning to See: The Back Story

From birth I have never viewed life with binocular vision (seeing out of both eyes at the same time). My parents made this discovery when I was 2-years old. Having rearranged the furniture in the household, I suddenly began to run into things, cried often, become quickly agitated. My whole demeanor changed instantly. As a young mom, my mother knew something was wrong but in her youth many doctors did not believe her. At one point they even sent in a psychologist to have HER evaluated. I passed the typical vision tests and my case was quickly dismissed. Clearly, something was wrong with my mom and not me...was the thought of many of the doctors. My mother, age 18, however, kept persisting until she was finally referred to Dr. Robert Ford, an ophthalmologist in Chehalis, Washington. After a short exam he broke the news to my parents:

"Your 2 1/2 year old daughter is legally blind." 

I can only imagine the thoughts going through my parent's minds. Could she really be? How did we miss this? What now?

Up to that point in my life, my life was a series of routines: I got dressed the same way everyday, sat in the same chair at the dining room table, took a bath in the same order, I would easily snuggle into my mom for story time and "read" with her...everything was predictable until the furniture was moved.

Shortly after my diagnosis, I was taken to the hospital between the ages 2 1/2 and 3 for a surgical procedure in which one of my eye muscles would be shortened. The goal was to "restore" my vision from seeing blurbs and blurs to seeing actual shapes and outlines.

Even at that young age I remember being in the hospital...board stuck to my arm; watching "sleepy" cartoons (which I now presume they had me watch as they put me under). I remember the blue Care Bear blanket my grandmother brought me. It was blue with a blue satin ribbon at the top. On that blanket, I remember the brown Tenderheart Carebear with the red heart on his chest. I remember receiving the baby doll that cries when you flip it over onto its back...which I still have. I remember red curtains and the hospital bed with rails. I remember feeling confused as I laid in the hospital bed and looked up to see my grandma and mother looking down over me.

Although I do not recall the moment I saw actual images for the first time, the surgery was a success. I could see.

My parents worked hard at catching me up in terms of learning the world around me. For example, from birth my parents talked about the trees, leaves and flowers...the colors, textures and shapes. So theoretically I knew what these things were. I just never experienced it for myself until after the surgery. In essence, I had to re-learn about the world around me and engage with it in new ways.

Although I always loved school, it proved to be difficult for me. I had to spend extra time focusing on a task because my eyes do not coordinate. Even now, I suppress the vision of my right eye and my left eye does most of the seeing. You could imagine how difficult it would be to learn how to cut paper following a line or trace a line without the use of one eye. This also effected my comprehension and my ability to learn how to read. I spent lots of extra time in the chapter reading lab or being pulled to the back of the classroom to work on "special" exercises separate from my classmates. Although it might sounds awful and difficult and strenuous, it was all I knew. My little eyes and brain learned how to adapt to the world around me. I knew nothing else but seeing with monocular vision.

In second grade I was almost held back but my parents stood by me and encouraged me to progress with my classmates to the third grade. I did fine! In fourth grade as we learned more complex math I had a wonderful teacher-aid who realized that I simply was just not getting "it." She taught me "touch math." It made ALL the difference in the world. To this day I use this strategy when counting, paying a bill or adding a tip to a receipt. There is no other way I can do math.

Moving forward, I have been able to succeed at most things in life, despite taking a unique approach or even taking a little longer than someone with binocular vision. I graduated high school and college on-time and with honors. I completed my graduate degree in a year and a half while working multiple jobs and earning high honors. Everything just take more effort, but I do it.

Despite these successes, life for me is not without challenges. Often people don't think I am looking at them (only using one eye at a time, my suppressed eye can and does often wander out making it unclear if I am indeed looking directly at someone). Driving is painstaking. I avoid it at all costs. It requires so much focus, attention and strain on my "seeing" eye. My peripheral vision is compromised. I can only see about one or two cars in front of me so things seemingly come out of nowhere and easily scare me. This is why I take the same driving path (even if it takes longer) and why I stay in the same lane on the freeway (even if it is going 20 mph slower than the posted speed limit). Driving to new places terrifies me because I am unsure where I am physically in relation to a new space. Either I worry, study the map, go the day before (or make excuses why I can't go) so I know for sure how to navigate to the new place...or better yet I have my husband drive me past it or if possible just have him drive me. Parking garages? Forget it!! Unless there are three or four open spots all next to each other I don't even try. I know for sure that if there are 3-4 open spot together I can get my car parked in one of those spaces without damage to myself, my vehicle or those around me.  On a similar note, I will park four blocks away from where I need to go just to have a "safe" parking spot to place my car. Walking up and down the stairs I tap my heels or toes to ensure I don't miss a stair. I use shadows and shade to determine where it is safe to walk or drive. The recent solar eclipse threw off my spatial awareness so much. One of my reference points, the shadows cast by the sun, was gone. Most recently, my husband asked me to clip our son's toenail while he held his foot. I realized I could not do this without touching the toe its self... a physical point of reference. My sense of touch has helped me overcome my monocular vision. After thinking about it, subconsciously in many ways I use strategies that many blind people use. I use my sense of touch as a way of "seeing" and navigating though my physical world. Up to this point, I never realized this. Once I did, I started noticing how much I rely on physical touch to help me in everyday tasks that most people with binocular vision can't even imagine.

It amazes me how the human body adapts and how the brain makes accommodates to operate in the world when one of the senses isn't fully functioning.

In the mid-2000's I decided to try out vision therapy (VT).  I was a 23-year old graduate with a master's degree and I was fed-up with the occasional double vision and migraine headaches. I heard that VT could help, especially given my history. I remember walking into my first session. I was emotional, terrified and felt stupid for not being able to perform simple tasks that most other can do... like catch a ball. My therapy seemed haphazard and disorganized. Maybe I didn't fully understand the purpose or maybe I just didn't connect with my therapist but either way it was a stressful experience. I had maybe 5-6 sessions. I was asked to hold a pencil to my nose while I held out a string with beads on it. The goal was to get both of my eyes "turned-on" and working towards the same goal of only seeing one bead. I had to wear a black pirate like patch over one of my eyes, making me feel more stupid than I already did. One exercise required me to put black blinders on the lenses of my eye glasses. There were other exercises like pointing to objects on a moving field or looking into a teal colored lamp. One of the last session, I was taken to a dark room with an old-school overhead projector. The therapist displayed nursery rhyme characters (again, making me feel like a child), yet the purpose of this activity was to get both eye working at the same time, fixated on the same object, to see three-dimensional...something I have never seen before. After several frustrating attempts, my eyes and brain connected. I saw Nate King Cole's belly jump right out towards me. It was the first and last time I have knowingly seen 3D. It was the strangest, most disorienting feeling. Over the course of my treatment, my life was disrupted. The headaches remained. My stomach was upset from the shift if visual perception. I found myself running into doorways in my house (which I had never done before) or stumbling out of bed because I "missed" the floor. Everything I knew, all of the visual information I used, was changing. My body struggled to adapt to this new way of seeing. Although I did see progress and saw 3D for the first time, my therapy did not continue after those initial sessions. I felt like a failure. I felt defeated and the "stupid" feeling remained. This time with an altered perception of the world. I felt like I was worse off.

Over time I forgot about my VT experience and continued to live life as I always had---going on to get married, travel Europe, earn a lecturer position at a university and in the past three years start a family (three kids ages 3 and under).

My most recent pregnancy was difficult which led to the premature birth of our third child. Six-months postpartum I realized that my prescription glasses no longer offered the clear view of the world as they once did. I blamed my recent pregnancy and went to the eye doctor for an exam. Everything was routine. I was given a new prescription which was available in a few weeks from the exam date. Having picked up my new lenses, the world around me still was not clear especially out of my right lens. I went back for a re-exam. We decided to switch to another prescription which, a few weeks later, led to adding prisms back into my lenses (something I had about a decade ago). This still did not fix my seeing problem. I went back for a fourth time. After tweaking my prescription again using the phoropter machine I was given this news from my eye doctor:

I'm sorry Brandi. This is as good as it gets. 

It was still slightly blurry and unfocused out of my right eye. As of current, this is my "new" prescription, as frustrating as it may be.

In previous seasons of life I would have written this off as tiredness (I mean, come on, having 3-kids so close together, who wouldn't be tired). But this news felt different. It reminded me of the words Dr. Ford spoke to my parents more than three decades ago as he told them that their daughter was legally blind.

I could not accept this new "diagnosis."

So, I prayed. I researched. I internalized all of my past feels and emotions. I became brave. I found a vision therapy office that happened to be near my home. I made a late-night decision (what good comes from late night decisions...from an exhausted mind that is not clearly thinking) and I signed myself up for a free consultation with the local optometic physician. It was two-weeks out. I dreaded this appointment more than an appointment for a root canal. It brought on so much stress and anxiety. The day after making the appointment, I sheepishly told my husband...like I had done something bad or was confessing some horrible offense against him. Not fully understanding the bravery it took for me to even THINK about VT again, he shrugged his shoulder and said, "good. Go for it. Let me know how I can support you." Really?! That was it? Wow! Some tension was release but I was still anxious for the pending appointment.

The day of the appointment finally arrived. I pretended all day that it was not happening until about 45-minute prior. My husband looked up the address for me, coached me on how to get there and assured me everything would be fine. He stayed home with all three kids.

I found the building, first entering through the wrong doors (STRESS). I quickly found the correct set of doors, located the elevator and made my way to the second floor...10 minutes early.

The office was locked! Oh boy.

The staff was out to lunch and promptly arrived as stated on the "We will return at" sign. 2pm.

Deep breath. Here we go.

Once the doors opened, I walked up to the front counter, handed over my paperwork as I held back tears and my anxiety. The wonderful receptionist offered me a bottle of water, which I gladly accepted. It was a great distraction and it "gave me something to do" as I waited. Shortly after I was checked in the doctor came out...with a big smile, friendly face and eager to hear me story.....

to be continued...

Growing a boy: Emotions are still high

Daily, I recount the story of my son's birth. It is increbile to me how personal and how emotional it still is seven months later.

To see my son withing in pain; to see him not reaching the set "milestones" according to his adjusted age; to carry a heavy 20+ pound baby around the house (up and down the stairs multiple times a day); to pray moment by moment for wisdom; to keep records, charts, and details of everything he eats--when, how much, how often.

I am blessed by our sweet youngest but his situation often creates such heartache deep in my soul. Everything about it is emotional.

Just recently we had to switch from breastmilk/formula mix to just formula (since I ran out of dairy-protein-free breastmilk). We stopped mixing in rice cereal because we thought the formula would be thick enough. A sleepless night for all of us because of his SCREAMING, kicking and uncosulable emotions and three bottles later (over a 24-hour period...not a lot of food in-take) we ended up at the doctor's office.

Up to the appointment, Oliver was withing in pain...such terror and confusion in his tear filled eyes as he screamed endlessly for over 3 hours at a time before passing out from exhaustion...hands-tied as parents, not knowing what to do.

The doctor we met had such compassion...even sitting next to me hugging me as I cried my mother-emotional tears as I processed through my son's pain. We resolved that the solution was adding back in the rice cereal into the formula and increasing one of his reflux meds once again. And refraining from solids.

Since our appointment yesterday at 4:15pm, thankfully Oliver is doing much better.

I am so incredibly thankful that the Lord restores my soul. I am so thankful for those gifted and talented medical professionals who show compassion not only to our son but to us...using their knowledge to meet us in our desperate times and in our greatest needs. Parenthood is never easy but I am so thankful I have the Lord, those who join us in prayer and the technology/knowledge to make my son well.

I have nothing but praises and thanksgivings on this day.