Growing a boy: Triumph

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

So, here is the news:

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

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

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

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

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

Growing a boy: I had a moment of PTSD

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

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

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

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

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

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

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

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

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

**SIGH** Relief.

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

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

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

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

Glory be to God Almighty.

Growing a boy: When things are good

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

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

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

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

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

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

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

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

Maranatha 

Growing a boy: Knowing the difference

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

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

What is the difference between:

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

Other questions:

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

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

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

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

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

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

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

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

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

Maranath.

Growing a boy: sensory disorder?

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

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

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

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

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

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

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

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

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

Growing a boy: traumatic event-anniversaries

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

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

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

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

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

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

In peace and trust-
~B~

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

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

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

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

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

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

Growing a boy: Two Years Later

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

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

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

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

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

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

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

Growing a boy: Invitation and Response

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

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

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

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

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

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

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

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

Growing 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: just a "simple" x-ray

In less than a week our house will be ransacked by a one year old, two year old and three 1/2 year old. To say we are busy is an understatement. Our almost 1-year old learned how to crawl this week (using the splits... of all ways to learn how to crawl. It is HILARIOUS!). Our two year old learned how to climb out of his crib this week too, resulting in the crib bolted to the wall and the mattress placed directly on the floor. Our three and 1/2 year old is growing which means she is never full and is sleeping a lot (or just a little cranky when she doesn't get enough sleep). Yet-- our hearts are full. We are BLESSED beyond all measures.

Around this time a year ago, I was admitted to the hospital with the unknown condition of our third child. At 32 weeks gestation, the medical world could not determine what was causing all of my medical complications. It was a scary time. We are so thankful to my parents who took our oldest two without a blink so that I could be hospitalized. In the last few weeks of the month of March, the memories of this time often flood back into my mind (without permission!) and take me back to the physical pain I felt as well as the emotional stress.

Fast-forward to present, our world is much different. Our "little" preemie is now 25 pounds and moving like crazy. He is not yet meeting ANY of his adjusted-age milestone (according to the medical world) but to me HE IS PERFECT! To be honest, he really is acting like an 8-month old...something most people don't understand. I feel like I have to constantly justify why my 12-month old can't feed himself, why he can't figure out a sippy cup or why his is not yet pulling to a stand or starting to practice walking. It is a tough world that, thankfully, most people have never had to deal with.

Today marks another milestone: his one-year surgical follow-up and x-ray. For some reason, tears just flooded my eyes as I typed that. This appointment will determine if the tumor that was in his right lung at birth has grown back or is (hopefully) gone forever. There have been many times this past year I have cried, worried and wondered if there is a tumor growing in my sweet precious Ollie...again something, thankfully, most people have never had to deal with. In a matter of hours we will hop into our car and make the dreaded 45-minutes North to the hospital where our son spent his first 16-days of life. It is all too clear---that unknown time of "Will our son live or will our son die?" We will walk in today, stroll past the check-in desk, past the Starbucks (where we found a little reprieve during his stay), towards the elevators that will take us to the NICU floor...where we said goodbye to our son on a few different occasions. Yet today instead of the NICU we will visit radiology for an x-ray and then wait to see the surgeon face-to-face to hear him speak the words that will determine the next steps for our son.

Today has many implications. 

I am more emotional than I thought I would be. Regardless, today WILL be a good day! I am thankful that Jesus walks before us in all things as well as walks with us! So...please join us today in great anticipation of such a simple x-ray that could change the medical treatment of our son.

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.