Blasphemous Rumors

My favorite band growing up was Depeche Mode. They were a 1980’s electro-sync pop group that had various songs that for one reason or the other spoke to me in my teen/college years as the angst of my “misunderstood” youth raged with the passion of a thousand suns as the mounting pressures to perform on the track or in my chemistry class seemed to pull at every fiber of my being. One particular tune that resonated with me was “Blasphemous Rumors.” Oh this song….its chorus has been forever ingrained into mind. It is a slow depressing song with a catchy chorus that whines:

“I don’t want to start any blasphemous rumors but I think that God’s got a sick sense of humor and when I die, I expect to find him laughing.”

I have thought about this song a lot recently as maybe God is laughing at my situation. Don’t be so quick to judge me on my blasphemy. Would you blame me if I turned on my faith? Maybe you might turn too. Life is very hard; case in point my life the past few months. Let’s rewind:
• 12/30/2016- I am sitting in my office reflecting on the year. I literally say out loud, man 2016 has been the best year of my life. No more than 15 minutes later I receive a phone call from my brother in law Chris telling me that there has been an incident. The result of this incident will require my 14 year old special needs son to live temporarily with his grandparents in Golden. The humility of not being able to take care of your son is devastating.
• 1/6/2017- I receive a late night phone call from my parents. The second I see it, I know what has happened. My grandfather, the man I have aspired to be like, has passed away.
• 3/2/2017- A clear genetic screening has been completed! Now we leisurely attend the ultrasound in a anxiety free state. This is the day we meet our little boy. Mid way through I see a change in the tech’s demeanor. She asks Christina to turn sideways. I ask if everything is alright. She tries to poker face me and says “she is doing routine work”. I am a banker I read people for living. I know something is wrong. The tech leaves and Christina asks if I am alright. I tell her I am nervous. She says it will be ok. It wont, I know something is wrong. The doctor walks in. This cant be good. Oh God don’t let her sit on the table. She sits on the table. Oh God don’t let her touch Christina’s leg. She touches Christina’s leg. I know it is bad. I can feel the blood rush out of me. My head drops. I go numb.
• 4/26/2017- Christina calls me and says Josiah’s cold has taken a turn and that he is in the ER with a 105.3 degree fever. I rush over and they think he has a UTI. They run some tests and send us home with medicine. Thank God. That could have been worse. The following day Christina’s phone rings at 6 am. That cannot be good. Mrs. Frasier We need to run follow up tests. Josiah has already been admitted to Children’s please bring him down immediately. Thus starts a four day battle of Josiah and the doctors fighting for his life against a kidney/bladder infection going septic. The doctors eventually tell us that everything is going to be ok and that there is a less than one percent chance that Josiah will need surgery.
• 5/21/2017- I am in the garage reflecting on our situation when Christina screams “Danny were going to the ER. I run into the house and see a gaping cut across Eli’s head. Eli, not to be out done by his brothers, takes a header on the entertainment center. The cut requires 7 stitches. Eli was a champ but I swear I could hear the needle piercing his skin as he sat in my lap for stitches.
• 5/25/2017- We go to the doctor and have some awful tests run on Josiah. We find out later that Friday afternoon that Josiah’s kidney/bladder infection is caused by a stuctural/functional issue and will require surgery. Furthermore, he has a 5% chance of losing said kidney.

Thud. That is the sound of my head hitting the mat. Hearing Josiah’s news was a death shot to my frontal lobe. The woe is me mentality has officially taken over. Internally, I don’t want to get up off of the mat. One too many punches. Why get up to get knocked down again? It is just too damn hard. Seriously, has anyone ever heard of a family having this much happen in 5 months? We have to put two of our babies under the knife within 60 days of each other. No one would be able to get up off the floor. I cannot rise. My faith is gone. I think back to Depeche Mode…. “God is laughing”!

Clearly after Josiah’s news I took a pretty hard tailspin. Shortly after in my car, I recall a recent conversation I had with a friend. I audibly scream out to God at the top of my lungs. “God if this is what being a Christian is all about, I don’t want to be a Christian.” I boldly state that “I am not going to church anymore. Look at what good it has done me!” I say “the more I get to know God the harder my life gets. I am not praying anymore as it only causes more pain. Why would I waste time getting to know someone who just laughs at my circumstances?”

That night I tell my wife, who has a bachelor degree in Pastoral Ministry, that I am done with God. She takes this opportunity to clarify that this is not being caused by God. She reminds me of a sermon we heard where the devil leaves people alone who are not a threat. Hence the reason you sometimes see sinners or the unsaved living charmed lives. She reiterates that there is evil in the world and we are currently being attacked. I argue that Old Testament God was mean as hell. She argues that Jesus released us of God’s Old Testament Wrath. She quotes: 1 Peter 5:8-9* commands us to

“Be on your guard and stay awake. Your enemy, the devil, is like a roaring lion, sneaking around to find someone to attack. But you must resist the devil and stay strong in your faith.”

I know evil exists in this world. Over the past 6 months I have looked it in the eyes. I felt its breath on my skin. It had been swirling around me for months anticipating, waiting, lurking for me to relent to the darkness’s constant pressure. At that lonely moment in my car on the way home, I weakly conceded to the notion that God had betrayed me. As soon as the words left my mouth I felt the serpent that had been slinking around my feet coldly slither up my body and coil itself tightly around my neck as its head reared up and hissed its orchestrated vileness about God’s betrayal into my ear.

I have not resisted the devil. I have not remained strong in my faith. I know it and I am not proud of it. I hear Christina’s words and internally I come to, my eyes gradually open and I lift my head up off of the mat but the pain of my life’s circumstances are just to much for me to overcome and rise at this time.

It is now Sunday morning. Christina asks me if I am getting out of bed. I say I am not going to Church. I instantly see the pain in her eyes. Not only am I betraying God. I am betraying her. I am betraying my vows. I love her so much, the betrayal in her eyes makes me physically rise and get ready for church. Internally, I crawl to all fours but I am not ready to get up yet.

At church a miracle happens. Pastor Brady (@pastorbrady) preaches about a verse that I have been thinking about posting into this very Blog for over three weeks. In the wake of Josiah’s news and my internal fall from grace I completely forgot about it. Brady reminded me to

“Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil’s schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Take the helmet of salvation and the sword of the Spirit, which is the word of God” (Ephesians 6:10-17* NIV).

Clear as day, the sermon was God speaking to me. Simply put a miracle. I think back to Depeche Mode. God is not laughing at me. It is the devil. Externally, I audibly beg for forgiveness. Internally, I rise up off the mat and dust myself off. I am now standing in an attack position, because I have my armor. I have my belt. I have my breastplate. I have my shield. I have my helmet. The battle is just beginning but I am ready. No more laughing, Devil.

GoFundMe Baby Frasier

I just can’t…

“They say sometimes you win some, sometimes you lose some. And right now, right now I’m losing bad.
I’ve stood on this stage night after night, reminding the broken it’ll be alright. But right now, oh right now I just can’t.
It’s easy to sing, when there’s nothing to bring me down. But what will I say when I’m held to the flame like I am right now?” -MercyMe

I’m tired…And I don’t mean I’m entering the homestretch of the third trimester of pregnancy tired (although I am that too). I feel exhausted mentally, emotionally, spiritually, as if I have absolutely nothing left. Most times in life if I’ve begun to feel like this I try to get outside of myself and help someone else who is also going through something tough. I spend time listening to what is going on in friends’ lives and be supportive of them. I find that focusing on others’ needs instead of drowning in my own really helps me to gain perspective, to see the bigger picture and recognize the good things that are happening. Right now though, I can’t even do that. I don’t even have the energy to reply to simple texts from my closest friends. I’ve severely neglected all of my relationships lately. I’ve even told some of the people who are closest to me to stop talking because I cannot deal with their emotions. It’s simply too much for me to carry. Some days I don’t even know how to pray.  I feel like a horrible person and honestly there are moments I don’t care how horrible I am because I just can’t.

Other times I find myself spilling all the intimate details of my life to complete strangers or new friends/acquaintances who out of kindness made the mistake of asking me how things are going. There’s a certain element of catharsis to spilling your guts to someone you know absolutely won’t or can’t try to give any input into the disaster of a story you just told them. Other times I find myself getting angry, overwhelmed, and shutting down because of someone asking me things like “what are you going do to do about _________(fill-in-the-blank)” or “what if _______ happens?”
I want to shake them and scream “I don’t know, I don’t know what to do!”

I absolutely cannot deal with the “what ifs” or creating solutions for the heavy situations coming down the road. I know most folks are simply trying to ease their own worry by finding out what my answer is, because generally I do have (at least in theory) a solution or plan for dealing with the problems that may arise for particular situations.  Other folks I think are trying to be helpful in bringing up potential situations that might occur, thinking that perhaps it hasn’t occurred to me that   fill-in-the-blank    could happen. Well, I can’t think of a single thing someone has asked that I haven’t already thought of…and I still don’t have an answer. All I can do right now is take it minute by minute, day by day and sometimes I can’t even do that. Sometimes I shut down and say “I can’t deal with this situation today” and I put it off until tomorrow in an attempt to self preserve and maintain my own sanity.

IMG_0715

Now that I am obviously and undeniably pregnant to the casual observer I get approached all of the time in public by well-meaning strangers. Some days it’s nice to hear from a stranger that “you’re glowing” and pretend like this is a run-of-the-mill pregnancy, as if nothing is wrong. Other times a well-meaning stranger engages a little too much and it feels too dishonest or too heart-wrenching to pretend everything is fine and I blurt out the whole story. My apologies to all the people who are now terrified to ever talk to another pregnant woman again because of me.

I was meandering through Costco this weekend on a mission for toilet paper and paper towels. I was annoyed at myself for moving so slowly and feeling like everything hurt – back, hips, feet etc. Then I realized, oh yeah I’m in my final weeks of pregnancy. I have 6 weeks or less left. Not more than 3 minutes later this sweet girl at one of the kiosks asked me when I am due. I told her and she remarked on how wonderful I looked for being that far along and said “oh I bet you’re ready to be finished.” Cue the waterfall of tears. Yes and no. I mean yes pregnancy is hard and by the time you reach the end you are SO READY for it to be over. I did have a little more patience and nostalgia this time around knowing it would be my last pregnancy. However, now, as much as I want to give in to the discomfort and say I’m ready for the pregnancy to be completed, I’m not. I’m not because how in the world can you be ready for a pregnancy to be over when you know that once it is, your baby will begin the fight for his life? How can you be ready for it to be over when you know that’s when the actual hard part begins?

I’ve met a really fantastic community of “heart mommas” whose children have CHD. They’ve shared their experiences and sometimes it’s overwhelming so I have to take a step back. Sometimes I feel silly for my “woe is me” because they’ve survived all of the things I’m complaining about. But that’s the thing, they’ve survived it and they tell me if little ol’ them could do it, then they know I can do it. That tells me that they all have felt just as unprepared and weak as I do. It is amazing to me to watch these women who are still struggling through the thick of some of their kids’ battles, jump in and take time to be supportive of other moms.

I think of my own mom often and of all the things she struggled and fought through for us kids. I don’t know how she did it. Lots of time on her knees in prayer. I look at my own life and know she raised me to be a better mom than I’m being. Even now my family is carrying a huge portion of this burden for me just so that we can survive and I feel helpless to help them.

If I could ask anyone reading this for anything it would be to please keep praying for us. Please pray for strength, grace, insight and wisdom for all of those involved in providing care for my children.
Ethan’s needs require continuous ongoing prayer.
Even though we were told Josiah had less than a 1% chance of requiring surgery for the issue that landed him in the hospital, as it turns out, that is the road we are headed down. Now we are trying to coordinate plans for his care as the time frame begins to bleed into the same time that Jonathan is due to be born and undergo surgery.

I know God can miraculously heal. I know He can provide new organs and new perfectly functioning systems for my children.

Thank you for your prayers and support to everyone out there. Some of you will never know how much your one kind word or gesture (even an indirect interaction with us) got us through a difficult moment.

Baby Frasier Medical Fund

Rest Easy

 

One more mile ’til I lay rest
I have put myself through this rigid test
But the mile has never ended, no distance has been gained
I do not see greatness I wanted to obtain

Apparently Elijah decided he’d had enough of his brothers hogging all of the attention and jumped in on the action. Last night (Sunday) he took a header into the entertainment center. When he turned around and stood up I thought “oh no, don’t panic, heads bleed a lot.” Then when I picked him up and saw the size of the gash I immediately yelled to Danny “Emergency Room! Now!”

Where is my embrace from the race that I have run?
I have kept a steady pace but still I have not won

Seven stitches in the forehead later, we were back at home facetiming with big brother Ethan to help cheer up the battle wounded warrior. We’ve been very fortunate that my parents have been able to care for Ethan during this time that he’s had some behaviors and difficulty adjusting to all of the changes he’s been facing in life. I know it would have been especially hard for him to see Eli hurt and sit in the emergency room for treatment as medical facilities cause him stress and anxiety.

Rest easy, have no fear
I love you perfectly, love drives out fear
I’ll take your burden, you take my grace
Rest easy in my embrace

Fortunately the ER doc was able to use a topical numbing agent on Elijah’s forehead. He didn’t care for it but it was much better than an injection. As we waited for it to take effect, Josiah patted his leg and said “it’ll be fine. Don’t cry Eli.”
When it came time for the stitches Danny stayed with Eli and I took Josiah out of the room as didn’t want to traumatize him as well. As it turned out Eli did great. He didn’t fuss or fight the doctor on the stitches at all. The doctor found me in the waiting area to tell me that it was the best he’d ever had a kid sit for stitches.
No signs of concussion or any other trauma, just a fantastic cut.

I am such a sinner, I fear my evil ways
I fear my imperfection, I fear my final days
I just want to take control and snap this rusty chain
Drop my heavy burden, it seems to be in vain

Sunday was an emotional day. Danny and I began our discussions on Jonathan’s Advance Directives. We know where we stand on making decisions to treat or not treat based on numbers and success rate statistics. It’s the issues such as: at what point do we enact a DNR, that we are struggling through. I’ve heard of stories of babies who required resuscitation after open heart surgery who ended up being fine. However as a nurse (especially a hospice nurse) I know about all of the other stories when things don’t end up fine. At what point with resuscitation, intubation, etc is enough enough? Unlike in the movie The Mexican I don’t think the answer is “Never.”

Rest easy, have no fear
I love you perfectly, love drives out fear
I’ll take your burden, you take my grace
Rest easy in my embrace

We have a lot of prayerful consideration ahead. These are not easy topics nor are they easy decisions. No one can make the choices but us and we are going to have to rely heavily on the Lord to know what our decisions should be.


I am not a bold man even though I want to be
I am just a dreamer with a timid history
Scared of confrontations I fume all through the night
The world has it’s hold on me and I just want to fly

I wish someone could step in and say “do this. This is the right answer.” I suppose that’s why we have the Holy Spirit. I’ll admit though, it is hard to hear His voice at times, especially when all of the shouting, the fear, the anxiety on the inside of your own head is trying to drown everything else out.

The sky, the sky is open wide
But I can’t fly ’til I step aside

I had been feeling super anxious on Saturday evening into the next morning. After we made it into church I began to feel some relief. It wasn’t necessarily the sermon (which was excellent) or the worship (which was also amazing) but the connection with our community. It’s difficult to even put into words how meaningful it is to simply see a familiar face, to get a hug, to have someone genuinely listen to how you’re doing. We haven’t been able to make it to church in about a month and not going hurts. I realized that in a few weeks we won’t be able to be physically present at our church. We may in fact miss a few months. I’m sure we can find a church to attend while we’re away in Denver, but will we find the community?

Rest easy, have no fear
I love you perfectly and perfect love drives out fear
I’ll take your burden, you take my grace
Rest easy in my embrace

It’s all in God’s hands now. There’s not much we can do about anything.

Rest easy
Rest easy
Rest easy in my embrace
Rest easy

-Audio Adrenaline

Baby Frasier Medical Fund

Quick Update

We’ve had a million and two doctor appointments since I last updated on how Jonathan is doing. Between the chaos of Josiah being sick, and then the rest of us (minus Ethan thankfully) picking up this horrible cold that I will always look back on as “the plague,” we haven’t had a lot of free time on our hands. Every week I have at least one appointment for the pregnancy and at least one appointment for one of the other kids.

Per Jonathan’s last echocardiogram nothing heart-wise has changed. We keep holding on to hope every time we go in that today will be the day mouths drop open in shock as they tell us everything looks great. It hasn’t happened yet, but we keep praying for it. The good news though is that nothing has gotten worse. There was a fleeting moment of terror when the cardiologist came into the ultrasound room to take a second look at something that concerned him. It turned out to be nothing, but still, in that moment when the doctor is pursing his lips together and intently studying the ultrasound monitor you can’t help but hold your breath for an eternity and wait for the proverbial “other shoe to drop.”

Our latest maternal fetal specialist ultrasound showed that Jonathan’s growth is right on target and everything else looks great. Essentially, outside of a major heart defect, this is about as “typical” of a pregnancy as one can get.

Yesterday I had a routine OB appointment and everything was on track there as well. Heartbeat and movement were good, belly is measuring as it should, and glucose test results were normal.

Until yesterday our understanding was that all of our care (fetal cardiology, OB, maternal fetal specialist) would transfer to Denver providers at 32 weeks. Now believe it or not, lots of people vacation during the summer. As it turns out, medical professionals are people too. Shocking, I know. 😉
We’ve run into some scheduling issues with some of the various team members being out for vacation over the next few weeks. This means we will stick with our local medical teams for a couple extra weeks before transferring all care to Denver. This does save us some commuting time in the weeks prior to relocating to Denver.

I’ve spent quite a bit of time the last two days trying to get appointments scheduled here locally as our providers here had been anticipating those follow up appointments would occur in Denver. Over the next few weeks the frequency of our appointments will increase as Jonathan will be closely monitored for his health and well-being in utero. This means continued echocardiograms, ultrasounds for growth, and we will also begin doing a weekly biophysical profile.

Here is a link with some additional info on the medical side of how things look for Jonathan’s heart and what intervention after he is born will entail.
http://www.sistersbyheart.org/content/what-hlhs

Thank you again to everyone for keeping us in your thoughts and prayers.

 

https://www.gofundme.com/frasier

You’re welcome, and thank you!

My two little guys have fallen in love with the Moana movie, more specifically Maui and the “You’re Welcome” song.


They know all of the words and it’s a scream to watch them sing to it. They also now take advantage of every opportunity to say “thank you” and “you’re welcome.” This is actually really appropriate and relevant to our lives right now as we have so many people to tell “thank you.”

It is incredibly humbling to be in a position where you genuinely don’t have the resources or ability to even survive a situation let alone fix it. All you can do is graciously accept help from other people. In the past I have thought it was silly for people to get embarrassed about needing help. We all need a little help from time to time so don’t get all weird about it, just smile and say thank you because it’s no big deal.

Well I get it now. Sometimes you need more than a little help for a little bit of time. Sometimes you need big help, over and over. Sometimes it is really hard to simply smile and say “thank you” because you’re so horrified to once again need help and you begin to feel like you’ve become a walking charity case. You don’t want people to groan when they hear your name mentioned. “Oh those Frasiers, they’re in trouble again, I wonder what they need this time”
Danny and I have spent countless hours fretting over how we will ever express how truly grateful we are and how we will ever repay everyone for all of their kindness and generosity.
It has very much been an eye opening experience. It’s like trying to repay Jesus for his sacrifice on the cross. Impossible.

A GoFundMe (Frasier Baby Medical Fund) page was started for us to help us cover some of the expenses we are encountering on this journey. It has been a fun surprise (and by fun surprise I mean absolutely shocking to the point of feeling nauseous) to discover even after our high deductible, how many necessary medical expenses don’t fall under the coverage of our medical insurance. In addition to the unexpected medical expenses We will also need to temporarily relocate to the Denver area to be closer to Children’s Hospital and this obviously comes with a price tag.

A few folks have asked why the need for the temporary relocation. In order to provide the best possible scenario for Jonathan’s care and reduce any additional risks to his health, it is best for him to be born at Children’s Hospital. Some doctors have even suggested we seek treatment for Jonathan at Boston Children’s or Children’s Stanford (which is astronomically beyond our means to provide for him even as much as we obviously want what is best for him). If he is not delivered at Children’s he will need to fairly quickly be transported there by emergency airlift. This of course would mean additional medical expenses and put us in the position of me recovering from delivery at one hospital while our newborn baby boy fights for his life at another hospital.

This is my fourth baby. A couple of my kiddos made early appearances into the world, with baby #3 making a very quick entry. Prior to Jonathan’s diagnosis my regular OB had already informed me that “the moment you realize you’re in labor you need to head straight to the hospital because I’d prefer if you didn’t have a baby in the car.” Taking this into consideration the medical professionals have made it clear that we need to be within easy driving distance to Children’s Hospital at least a few weeks before our due date.

Our goal is to create as stable of an environment as possible for all of our children with the chaos they are bound to experience this summer. We want them to have a safe living space. We want to be these awesome parents who are able to be everything and everywhere for our kids but the reality is that we’ll have a baby in the hospital, kids at home, and Danny still has a job to work (which may require a long commute for him). We can’t be everything our kiddos need.

As a pregnant mom you carry your baby for 9 months and then when he is birthed upon the world you expect to be able to be there to comfort him and hold him close so that he can adjust to “life on the outside” as gently as possible. My baby is going to be in a hospital undergoing open heart surgery. I may not be able to snuggle him the way it seems a mom and a newborn should be able to do. I want to be there as close as possible to him and at the very least to provide the familiar sound of my voice during those times he can’t be held. At the same time I still want to be present for my other children. Their needs don’t go away just because they have a sick brother. I still want to be the best mom possible for them, to laugh and play, instruct and guide, hold them when they cry and let them know that they are safe and well loved. Danny and I can’t be everywhere at once. When we aren’t able to be with our other boys they need safe and reliable care which means we have to accept help from trusted people. We will incur childcare expenses as it is unfair to expect anyone to sacrifice time away from earning their own paycheck. We do not want to take advantage or cause anyone to feel resentful for helping us or our children.

Amyhow, all of that said to get to the point of saying thank you.

Thank you to everyone who has shared the GoFundMe page. Every time I see that it’s been shared my heart is warmed that so many people believe we are a worthy cause. We have been floored by the generosity of all of you who have donated. There have been donations from our family, close friends, friends we haven’t seen in years, friends we’ve just met and people we have never met. It is tremendously humbling. Thank you for caring that much about us. Thank you for believing our baby’s life is worth it.

We are also so truly grateful for the support of our communthity around us the past couple of weeks. This is an entire other story in itself to share but here’s a short summary.
Our 3 year old Josiah had been sick for a few weeks with many visits to the pediatrician and urgent care. On the day his fever spiked to 105.3 (yes you read that correctly) his illness was no longer brushed off as some unfortunate viral infection that he was taking a long time to recover from.

Our sweet little guy ended up being hospitalized for nearly a week. He underwent numerous invasive and noninvasive tests. I can’t even express the heartbreak of having to hold down your sick 3 year old while something painful is done to him especially when he looks up at you through his tears and cries “mommy help me! Mommy they’re hurting me!” He doesn’t understand that you’re trying to help him and that the bigger fear is not the pain he’s in now but the fact that if someone doesn’t find an answer soon he could die.

It was a long and terrifying ordeal that turned out to be a severe kidney infection requiring several days of IV antibiotics. He will need some further testing over the next few weeks after he recovers but praise God because he’s on the mend.

I can’t express enough thanks to all of the people who prayed. I put out some desperate and panicked messages/phone calls/emails and the response was overwhelming. I can tell you that it was after those calls for prayer went out that we started seeing things change and turn around. It is such a reminder to me to keep asking for prayer over our situation. If you have even 2 minutes right now please take a moment to pray for my kids.
Ethan is still struggling through medication and behavior issues. I try to maintain as much privacy for him as possible but he can use all of your prayers.
Josiah continues to recover form this infection and may potentially have other kidney issues that need to be addressed.
Elijah has born the brunt of being “the only healthy kid” for the past couple of weeks. He is now in need of a lot of attention. He seems to be having night terrors and some separation anxiety.
Then of course there’s Jonathan. He still needs a miracle for his heart. We believe God can touch his heart and cause it to grow and form as it should.

I have so many of you to thank for all that you did for us while Josiah was in the hospital. Thank you for praying. Thank you for listening to my fears and worries at all hours of the day and night. Thank you for putting your entire day on hold to take care of Eli so that we could be at the hospital. Thank you for bringing us meals and running errands for us when we were so tired that we didn’t know how we’d make it through the day.
I know there’s so many other people to thank for so many things and I sincerely apologize if I missed you and what you did for us. Please know that you are appreciated. As I try to think of how I can ever appropriately thank everyone, a scripture from Genesis keeps running through my mind “I will bless those who bless you.” This was God’s promise to Abraham; to the children of Israel and in turn to us once we are adopted into the family of Christ. Thank you for being a blessing.

 

Don’t forget it’s National Nurses Week! Thank you to all my nursling friends out there for doing what you do. Thank you to all my Pikes Peak Hospice peeps! Thank you to all of the nurses who have recently cared for my family (Memorial Hospital ED and peds, Children’s Hospital Cardiology and SC Maternal Fetal Medicine)!

The Calm and The Storm

I have intentionally been an absent voice during this entire process. I have not shared anything because I do not want to hurt you. It doesn’t take a psychology degree or ESP to see the pain in your eyes when I tell you about Jonathan’s plight. It tears me apart to see my friends, family, clients, hell even complete strangers hurt. This is not your burden to bear and I feel that the less I say the less likely I am to hurt you, which in turn means I don’t hurt myself.

One fall I took a fishing trip to Alaska. I was fishing in a seaside port town called Whittier. My friend and I were in a rocky cove with completely serene waters. So serene, one could peer down from the 30 foot cliff and see schools of salmon making their 10 to 15 minute laps in the pristine cove. When the salmon would enter the cove fellow fishermen would start calling out as to alert the neighboring fishermen that the Salmon were headed their way.

Until this moment, I had never seen or been a part of a team fishing experience. This was exhilarating. One after the other like dominoes collapsing on each other the fisherman would call “They are coming.” My friend and I followed suit and screamed at the top of our lungs and laughed when the school swam by. Our exhilaration caused us to miss the fish as we had inaccurate casts from being atop our 30 foot cliff. To get a more accurate cast on the salmon’s next lap, I climbed down the rocks to the waterline and precariously hung out at the 20 foot deep waters edge. I figured with the water being as calm as a lake, what is the worst that can happen? I fall in? Who goes fishing in Alaska and doesn’t expect to get a little wet? I continued to fish from my perch.

As time past the alerts from fellow fishermen, even my friend, became fewer and more spread out as everyone was packing up and heading home. I couldn’t blame them. The fishing was pretty slow but I didn’t fly to Alaska to get skunked. An hour or so later, I heard a very distressed man scream inaudibly at me. For the life of me I could not make out what he was saying. Soon after, another man came over and began screaming and motioning toward the sea. This was followed by my friend joining the couple and motioning for me to come up. I decided to climb back up the cliff and see what the commotion was all about. Maybe they want me to see a whale.

The serenity of the sea had recently been replaced by a “noise.” By the time I carefully scaled up the wet cliff that “noise” had turned into a roar. The previously serene cove had turned into a swirling, tumultuous ocean that had engulfed my precarious perch. I, being from Colorado and having limited ocean fishing experience, was completely ignorant as to how fast, violent, and unannounced the high tide coming in could be. Ten minutes later my perch was under 10 feet of debris filled water that was viciously crashing into the cliffs I had just scaled.

I have dreamt about that cove many times in my life. Sometimes in my dream I do not make it back to the top of the cliff. Instead, I fall into God’s washing machine at high tide. My life is currently at the waters edge and the tide has come in. This tide is a combination of raw panic, angst, anger, and fear of what is to come physically, financially, and emotionally. I cannot internalize this anymore I need to share. I needed my fellow fishermen’s help on that nearly fateful day in Alaska and today God called down to me playing at the waters edge to again warn me of my ignorance. God advised me that internalizing Jonathan’s plight will only make certain that I never escape the tumultuous sea. I cannot overcome this on my own. I know that I am going to have to share my experiences. More over, I know that I am going to have to lean hard into God. Harder than I ever have. I know that I have slipped into the sea. I will soon be drowning in my own emotions. But alas there is hope:

When He got into the boat, His disciples followed Him. And behold, there arose a great storm on the sea, so that the boat was being covered with the waves; but Jesus Himself was asleep. And they came to Him and woke Him, saying, “Save us, Lord; we are perishing!” He said to them, “Why are you afraid, you men of little faith?” Then He got up and rebuked the winds and the sea, and it became perfectly calm. The men were amazed, and said, “What kind of a man is this, that even the winds and the sea obey Him?” (Matthew 8 23-27)
I am truly sorry if my future posts ruin your day, hopefully they can become a bright spot.

Every, every minute.

I don’t remember when or at what age I stopped keeping track of my birthday adventures. As a kid I could recite back every birthday celebration from every previous year. A few still stand out in my mind like my 8 yr old princess party,  traveling as an unaccompanied minor to visit my grandparents for my 10th birthday, or my joint “sweet sixteen” slumber party with my BFF. I also particularly remember my 24th, 29th, and 30th birthdays. Somewhere in there though, the rest of them become a blur.

Last year I spent my 35th birthday with my BFF when her husband so generously flew me (and 5 month old Elijah) to NY to celebrate her 35th birthday (a few days before mine). It was such an amazing time that I will forever be grateful to both of them for.
At the time I certainly did not anticipate how this year’s birthday would be spent. I never imagined I would be pregnant again, much less in the current situation we find ourselves.

This year on my birthday I attended an early morning fetal echocardiogram. Danny and I then spent another hour or so meeting with the cardiologist who will follow us locally when we’re not in Denver. I went into the appointment with a faint glimmer of hope that they would be like “surprise! Things are looking better!” Alas, that wasn’t the case, if anything, things were slightly, just by a hair, worse.

The doctor didn’t tell us anything we hadn’t already heard, we simply rehashed it, and he gave us time to ask any other questions we’d thought of. Unfortunately no one has answers for the questions we have. When will we be able to hold him? Will he be able to breastfeed? Will he need to be on oxygen?  Will he do ok at this altitude? Will he have complications? Will he live? Will he thrive?

The initial outlook is surprisingly good. The doctor told us to look at it like this: getting through the first surgery is the hardest part then the first month in the hospital and getting home are the biggest hurdles. The next hurdle is the first six months and getting through the 2nd surgery. Then after that things usually smooth out until the 3rd surgery. From there, many kids live relatively normal lives.

But then it starts getting hairy again. The working right side of the heart that Jonathan has is intended to receive unoxygenated blood from the body and pump it to the lungs at a low pressure. The left side of his heart that he is missing does the job of receiving oxygenated blood from the lungs and pumping it at high pressure to the rest of the body. The goal of the 3 surgeries is to replumb the heart so that the right side of the heart does the left side’s job. Essentially the unoxygenated blood will bypass the heart and go directly to the lungs. The right side of the heart will then receive the oxygenated blood and pump it to the rest of the body. Therefore you have the “low pressure pump” doing the job of the “high pressure pump.” This extra work on the heart can cause people to go into heart failure at young ages like 40 years old, 20 years old, even in the teen years.

I’m not going to lie, that’s a hard pill to swallow. I’m 36 and Danny is 40. Those ages sounded so old when I was 18 but it feels pretty young now. We have babies for goodness sake. Life is barely starting! Obviously it’s not an outcome that any parent wants to hear for their child.

In reality, there are so many tragic things that can happen to a parent’s child, during their lifetime: car accidents, addictions, disease. All of these things can unexpectedly shorten or decrease the quality of your child’s life, at any time, any age. I suppose if I had to pick I’d rather my child have a quality life in the time he has than grow up to be a drug addict who never finds peace or happiness.

I guess this is a bonus that we now have that perhaps other families don’t have. We will have to first learn ourselves, and then teach our children to live life to the fullest and take joy in every moment. I’m reminded of a line from Thornton Wilder’s Our Town.

“Oh, earth, you are too wonderful for anybody to realize you. Do any human beings ever realize life while they live it–every, every minute?”

Perhaps Jonathan’s life will be short, but perhaps any of our lives will be shortened. There are no guarantees.
I hope I never take another second for granted. I hope to teach my children not to take one single moment for granted. I think that’s what it means to live a life with no regrets. Not to live carelessly and recklessly, refusing to learn from mistakes because YOLO (you only live once) nor to live so cautiously as to the pursuit of no passion; but to live every moment of sorrow and joy, taking it in fully and wasting nothing.

“If you are not afraid of dying, you will not be afraid of living.” –@pastorbrady