Wednesday, January 24, 2018

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 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.

Wednesday, January 10, 2018

2018: My "reset" year

10 days into the New Year...I have made some pretty loft resolutions.

As I reflect backwards on the year before, I also dream about the year ahead.

My "backwards" year sure was eventful... discovered I was pregnant, took two trips to Canada and one road trip to Idaho, dealt with a house flood, birthed a baby who was born unexpectedly early with hours and days spent in and out of the hospital (not knowing if he would live or die), potty trained, my oldest starting preschool, attended two professional ballets, turned 35 and adjusted to being a family of 5 while both my husband and I work full-time. (And these are just a "few" highlights of 2017).

It was probably the toughest year I have endured to-date. EVERY WEEK offered a new challenge which allowed us to press deeper into God and sacrifice so much of ourselves to serve others and take care of the "things" (material and relational) God has gifted us with.

In 2018, my resolutions are big... focusing first on God. Trying to live more radically for Him by getting rid of the excessive physical clutter to make room to mentally focus on relationships.  My desire is to be more intentional about serving those around (my husband and kids included) by a willingness to be "inconvenienced" to obey the calling/directing of the Holy Spirit. It is a big resolution that can only be fulfilled IN Him.

My other "big" resolution is to take just a little better care of myself. It might seem silly to you but I realized I sacrifice so much for my family that I forget to take care of my basic needs... so at the risk of TMI, here are my other 2018 goals: washing my face every night; brushing and flossing TWICE per day instead of just once; being more active (I have been walking laps around my backyard as the kids jump on the trampoline...not exactly how I pictured working out but at least it is exercise); drinking more water and less coffee; and shaving my legs more (silly, I know).

So, here is to a "reset" year. Striving more fiercely towards God and taking better care of myself to being more intentional. It feels good to write these things down, to remember where God has taken me and where He wants me to go.

What about you? What are your big (and small) resolutions in 2018?

Thursday, December 7, 2017

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." 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.


Tuesday, December 5, 2017

Learning to See: My alted view

Around a table with some friends, I vulnerably confessed that I see only in 2-dimensional view. This, of course, brought up a lot of questions (which I was more than happy to answer). Seeing that I was struggling to communicate a few aspects of my vision, my darling husband chimed in.

"Think about a photograph or picture," he said to our friends, "This 'flat' view is what she sees."

Even though I read that description in my recent read, "Fixing My Gaze," it really did not dawn on me that I see things in a 'flat' way. I pondered this for a few days and brought the topic back into conversation around the dinner table with just me, my husband and kids.

After inquiring more about my husband's thoughts, he asked me to look at the pictures on our childrens' placemats. "What do you see?" he asked.

I began to describe to him what I saw, how I knew my son's head was round or that the fence was in the background. I mentioned the shadows on the faces and the obstructions of various items that told me where things were placed.

To my surprise, for the first time, I truly understood how I see this world as flat. My husband began to describe what he saw in the pictures compared to what he saw around him. I was shocked.

Could I really be missing out on this amazing thing called 3-D (or binocular) vision?

The conversation made me realize just how unique God has made me and how He has allowed me to see in such a spectacularly different way. It made me realize that there is something I can gain from this experience called vision therapy. It made me more curious than ever.

So...tomorrow I go in for my initial in-take exam and get "THE NEWS." I thought I would be more nervous than I am. I think talking about it, confessing it, reading that wonderful book about it has made me curious and slightly excited to start this journey. I have no idea what will come of it but I won't know if I don't try! I look forward to posting shortly after my exam tomorrow (well...maybe after all my students' finals are graded). :)

Thanks for joining me!

Tuesday, November 28, 2017

Learning to See: Seeing Hope

My "disability" (if you want to call it that) does not define me. It is not my identity. Maybe that is why I have never really talked about it before or taken the time to really process through what it means in terms of my daily life. It is interesting when you "put yourself out there." The one thing that was once unique and private is now very much public.

It is good. It allows me to OWN IT! This is just one aspect of me ... I have a vision problem.

In the light of eternity, however, those typed words (I have a vision problem) really mean so very little.

The fear I posted about in a previous blog are real fears but in my fear (as I typed those words, emotions, and feelings) I lost sight of God. I was focused on ME, on MY problem, and on my inability to "fix" the eyes that God has given me.  (I am SO thankful that I can see!)

Scripture COMMANDS us not to worry. As written in Jesus' words:
25 “Therefore I tell you, do not worry about your life...27 Can any one of you by worrying add a single hour to your life?....33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. (Matthew 6:25-34)

Scripture also says that, "I am fearfully and wonderfully made." (Psalm 139:14). It is about who God is and how HE made me---eye problem and all. This one aspect of my life does not define me rather it is Christ in me, the hope of glory that should define me (Colossians 1:27).

As Jesus was comforting his disciples he said, "Do not let your hearts be troubled. You believe in God; believe also in me." (John 14:1)

So, I have been ever so gently reminded that God is the ONLY one who can truly restore this area of my life (physically and emotionally). Yes, I have to do my part. Yes, He can use the doctors and therapist to help in this process. But in that, I have to be cautions not to have an unhealthy preoccupation regarding the degree to which "I" can fix my eyes (or how the therapist or doctor can fix my eyes). Instead, I need to see this as an opportunity to: 1) surrender. I need to surrender my fears, anxieties and the thoughts that I can solve this problem separate from Christ; 2) trust. I need to learn from and lean on Jesus. No matter the outcome, God is still good! Despite all the effort I could possibly muster, if God wants (or needs) my vision to stay as is, I need to trust and accept that...even before I truly begin this process; and 3) proclaim who Jesus is in my life and what He has done throughout the process (in my VT session especially), thanking Him for yet another opportunity to know Him in a unique way and proclaim Him to a perhaps unreached group of is my new mission field.

I think preoccupation is another reason why I have not talked about my vision so publicly...because I did not want it to become a preoccupation for me or for others. Once you put something out there into the world through vulnerability, other people can begin to only see you and label you as your "problem" or "disability," forgetting the MANY other aspects of the person who was brave enough to share an area of struggle. 

Personally, I enjoy talking with others about my new found understanding of my vision. It is exciting, scary and invokes a sense of adventure (and unknown). Because of this ability to share, others have come to me and have shared "hidden" areas of struggle. In that, we can mutually encourage each other. It also reminds me that I am not the only person in my circle of contacts who is struggling with something. It brings unity.

However, the danger is still there of preoccupation. Do people see me? Do they see my vision problem? Or can they see beyond that to Christ, the Creator of everything?

I honestly don't know if there is a way NOT to become preoccupied, even in the slightest, with my journey of vision therapy. If I decide to comitt to vision therapy, there will be a slight preoccupation (in addition to a whole lot of sacrifice) minute session per week on top of 20+ minutes per day of exercises and activities for 6-12 months. Not a commitment to take lightly.

Fear and preoccupation set aside....Hope!

Hope in the person on Jesus, liberates us. It allows us to confidently move into the direction He is calling us whether it is comfortable or not. In this, it doesn't matter if I succeed or fail at this vision therapy thing...what matters is sharing Christ's transforming work as I move through therapy. That is it. It is that simple.

Everything we do or say...everywhere we move, it is (or should be) our mission to testify to the goodness of God. Because of my limitation, I have been able to experience God's world in a unique way...and I am double blessed *if* vision therapy works because then I will have ANOTHER unique way to see the world God has created...what a gift, right?

My prayer is that this experience will bring me closer to God. I pray that I will see Him move in unexpected way, answering prayers about my vision in unexpected ways. I pray through my testimony of His faithfulness, as I journey through, others will grow in their relationship with Jesus (or perhaps even start one!). I pray that I will be able to commit and persevere (two things that are challenging for me) and in that, set a Christ-like example for my child.

I am about 1-week away from my vision "in-take" exam. In some ways I wish it was here so I can hear the news about the "plan" and in others, I dread the day...wondering if the next 6-12 months of my life will be "preoccupied" with this monumental task... we will all just have to wait and see.

Friday, November 24, 2017

Learning to See: No pity, please

As I lay in bed, after posting my whole-raw-self today on my blog, I became curious as to how those reading these posts may react.

I am still the same person I was prior to posting this "new" news. I am not asking for accommodations. I have never and will never ask for special treatment. Up to this point in my life, I have been (and will continue to be) a full-level contributing member of my family, church and community. I have figured out since infancy how to interact with this world around me despite my "disability."

I am an overcomer. When I need help, I have learned to ask. When I need accommodations, I either find/make a way and if that doesn't work, I ask.

By no means do I want to be treated differently or with "kid-gloves" because of my recent vulnerability to my blog post readers. Again, I am the same person!

We all have our struggles and we all overcome our struggles in different ways. Like me, some keep "secrets" quiet for a while revealing it over time (blogging as a way to process); and others never share. Either way, it is okay. The point is: we all struggle with something. Maybe for you it is a speech impediment your conquered in grade-school yet are still slightly self-conscious about or maybe you struggle with overeating or an inability to do math....what ever your struggle, I pray no one judges you for being open and honest as you share and work at overcoming too.

So, join me. Simply join me in my journey of discovery. Find relatable topics that might apply to your life or to someone you know. Feel free to post encouragements, share these blog posts, ask direct questions to me of things you don't understand or things you might want to hear more about. As you can see, I am more than open to share. :) But please, do not judge (if you do, do so only to takes boldness and bravery to be vulnerable).

I appreciate the positive feedback I have received so far. All of these emotions and feelings are so raw. I am glad to have a place to journal them, creating a document to pass along to my children and also a journal that just might encourage others to be bold and brave too.

Good night.

Learning to See: VT- My Fears

How can you explain to someone who has lost a leg that they will be able to walk again? That it is actually possible to walk, run, jump. Perhaps go to places they previously were not able to go to due to a missing limb. How do you explain that performing daily activities could be easier, less complex, even less daunting then they are currently.

It might seem impossible. The accommodations and adaptations have become second nature to this person. Navigating through the world has become bearable. Pathways formed and an understanding, even a full acceptance, of these limitation are now just the norm of life. In some ways it seems more difficult to explore the vast options and possibilities that an artificial limb could bring.

This is the best way I can describe what I am sensing right now.

Is there really a different, perhaps better, way to view the life I engage with daily? What does it mean to see 3D and how is that different from how I see now? Is it possible for my eyes to really work together? Could there really be a day when I don't have to "pull-in" my right eye because someone doesn't know if I am look at them? Could it be a reality that I could ACTUALLY catch a ball? Or even see a fast moving baseball once the batter has hit it (with my current vision my eyes can't keep up with the ball so all I see is the initial contact and then players scrambling to catch what I presume is the baseball [or football])? Will there be a day when I can go see any movie, any time, regardless if it is 3D or not? Will I be able to unlearn the emotional stress my eyes have brought me as I drive to new locations or in the rain?

There are so many unknowns as I begin this journey. Is it really worth it? Will things really change?

I guess I will never know unless I try.

This is not a journey to be taken lightly. It will require a one-45 minute session every week for 6-12 months. It entails daily homework/visual exercises. It requires a financial sacrifice since my insurance does not cover this type of medical therapy. And in the midst of dealing with the medical problems with our youngest, is this the best time? Will I be able to fully commit? Will the outcome be worth it?

More than anything, it is humbling to admit that I cannot do something. It is humbling to learn to see in the same stages that my 7-month old is learning to see as his eyes develop in infancy.

It is scary to think about living in a world that is visually different than what I have known all my life. In my previous VT experience, my life was disrupted. It was just me, living alone in all of my singleness. I could "afford" to look stupid doing my daily exercises. I wasn't endangering anyone if I fumbled down the hallway, running into doors, or stumbling out of bed because I misjudged where the floor was. Now the stakes are higher. Can I afford these same type of "mishaps" with an infant or toddler on my hip? Am I emotionally strong enough to face the ridicule of my toddlers as I wear an eye patch around the house? Once my eyes begin to work together, what if my new 3D vision "clicks in" while I am driving my kids around and I become disoriented?

These fears are real.

After reading several accounts of adults who had monocular vision and completed vision therapy, they describe anywhere from 6 months to a year of re-learning how to live in their worlds after VT was complete. How I would love to talk with them and ask them if it was worth it. Some experienced my fear of having their 3D vision "click-in" at inopportune times. Others commented on taking leave from work or reducing their workload, even laying with eyes shut for most of the day, so that their eyes and minds could make sense of their new worlds or simply recover from the new stresses of using both eyes.

Up to this point in my life, I feel like I have been the medical exception to everything. Taking a new medication? Of course I will have EVERY side affect no matter how small. Going in for a medical procedure and there is a 1% chance of a complication happening...yup, that is me. I will experience it. This is yet another reason why I am so fearful of starting this journey. No one can predict how my brain and eyes will react (and at what rate) to this new therapy. Maybe I am making a bigger deal out of it than it needs to be. Maybe I am obsessing over it too much. I just don't know. It is exciting, scary and unknown all at the same time. I am curious, intrigued yet afraid.

So, the next step? I have an official exam in early December. At that point the doctor will have a better idea about the condition of my eyes and how drastic my monocular vision really is. We will hopefully discuss a treatment plan. Then the decision...should I begin VT and embrace all it might bring...the good, the bad, and the seeing.

Now, I wait. I pray. I seek God for direction. I give thanks to God and his use of Dr. Ford who performed my initial surgery to help me see when I was a toddler. I wonder. I ponder.

Just like you, I have no idea what the ending will be. If you are following me in this, I invite you to pray too. This is a big, scary leap I am about to voluntarily take. I hope I don't fall, fail or force myself into something just for the sake of trying it again. Yet if I don't try will I always wonder?

...Stay tuned. Next blog post after my exam in early December.