Saturday, May 31, 2014

Day 12 - 05.31.2012

As Holden's condition worsened, the neonatologists and surgeons that worked with him told us they weren't sure what their next step should be.  They were debating whether or not they should do a second surgery or just continue to give Holden time to heal.  They explained to us that it was a very critical decision.  If they did the surgery, they may be able to find and fix whatever was stopping Holden from healing.  However, if all he needed was more time to heal then the surgery may set him back irrevocably. We felt completely helpless and were frustrated and discouraged that the professionals were questioning how to help as well.  We, along with many family and friends, prayed and fasted that the doctors would be guided to know what to do for our son who was suffering.  There is no explaining how it felt to watch Holden go through this pain.  All I wanted to do was scoop him up and take him far away from this place filled with tests, surgeries, needles, equipment and uncertainty.  I felt like I was failing in my responsibility to protect him.  I just wanted to make him happy.  I once again did all I knew how to do and prayed to my Father in Heaven.  I had never prayed harder, more sincerely, or with more faith than I did during these weeks.  This is one prayer that I remember very distinctly.  I walked into the little room attached to the NICU that Jared and I had been staying in and got on my knees to beg Heavenly Father to send divine comfort to my son, the kind of comfort that only He could give.  I cried and pleaded with Him to send angels to surround my sweet little Holden and fill him with peace.  After offering the prayer, I rose from my knees and walked back to Holden.  Jared, who was standing beside Holden and was unaware of my prayer, turned to me as I approached and said that he could feel angels surrounding the bassinet.   

We know that Heavenly Father loves His celestial son with a perfect love and was there for him during every second of his sacred Earthly mission.  Proven to us time and again is the fact that mortality is such a small part of our eternal existence.  There is so much more.  The veil has been made thin for us and through sacred experiences we have come to know with an absolute certainty that we are being carefully watched, helped, and strenghtened.  We have truly felt the palpable strength of angels.

D&C 84: 88 "And whoso receiveth you, there I will be also, for I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up."

Friday, May 30, 2014

Day 11 - 05.30.2012

Unfortunately we don't have any pictures to share from this day. This picture was taken outside the entrance to the NICU over 4 months later. We returned from Utah to finish my last semester at school. Janel and Johnny were visiting the island and we took the opportunity to show them where Holden had spent most of his life. We also had boy bassinet covers to deliver that Grandma Jeppson had made (when Holden was there there was only one boy pattern available).

We spent a lot of time pacing this hallway as family and friends came to visit Holden. Due to space constraints only two guests at a time were allowed to visit a patient. Special consideration was made when priesthood blessings were being administered. It was through those windows that a lucid rainbow awaited us to give renewed sense of comfort after a third blessing was given. It was in this hallway that we would update family, both in person and over the phone to those on the mainland, on Holden's condition. We would come out here to eat food brought to us by caring family members and friends. It was here that I called to withdraw from the CFA exam taking place that weekend and from the Goldman Sachs internship our family was supposed to leave for a few days thereafter. It was in this spot that a fellow parent of a patient said a heartfelt prayer for us and Holden. It was through this hallway that we were held up by angels as we returned to the NICU after Holden's surgeries. It's difficult to adequately express, but a piece of our hearts was left behind in this hallway. The most poignant memories of our life took place within the walls of this hospital.

Thursday, May 29, 2014

Day 10 - 05.29.2012

The staff at Kapiolani was so good to us and allowed us to basically move in with them. They let us pick out and change Holden's bedding, check his temperature, pick out books to read to him, and do as much parenting as we could in an otherwise helpless situation. We always wanted Holden to know that we were right there beside him.

Holden changed us the instant he came into our life. His birth was only the beginning of a long, drawn out transformation that he continues to effect in us. We've always been frustratingly far from perfect, so to be parents of a perfect child is extremely humbling and far and away our greatest gift that God has given us. Holden is our compass and our coach. How great it is to have a celestial son that can watch over us and remind us what lies in store for us if we are faithful. When we find ourselves taking a step in the wrong direction, we think of our son and we work to correct our error and shortsightedness, and to maintain eternal priorities.

The Lord gave us the tender mercy of running into President and Sister Uchtdorf today. As conversation turned from the child we're expecting to our first child and his passing, President Uchtdorf placed a firm hand on my shoulder and told us "You have a lot to live up to." We could not agree more. We love you, Holden. You set the bar high.

“What we love determines what we seek. What we seek determines what we think and do. What we think and do determines who we are — and who we will become.” ― Dieter F. Uchtdorf

Wednesday, May 28, 2014

Day 9 - 05.28.2012

Holden getting a chest massage to break up the mucus in his lungs. Each time he got this treatment he would like to hang on to our finger. There was never any questioning whether Holden was aware of who we were and what our role was there. That connection was like no other and transcends description. Anyone who met him can tell you that the understanding and wisdom this boy possessed was special. We suspect that Holden always knew what he had agreed to go through in life and what his mission was. There was something in him that was greater than us all. Recognizing that spirit in him then, helps us to recognize that spirit now.

"There is within each of us a divine spark of greatness..." - Joseph B. Wirthlin

Tuesday, May 27, 2014

Day 8 - 05.27.2012

I guess a common reaction amongst those who've lost loved ones, or experienced extreme setbacks in any form, is to blame or be upset with God. Many of us in some shape or form have grown up knowing two fundamental facts about God: 1. He loves us, and 2. He is omnipotent, or all-powerful. It's easy to understand then why some might feel betrayed, slighted, ignored, or forgotten when He who has unshaking love for us and power over all does not tip the scales of mortality in our favor, especially when we feel like we might justifiably classify ourselves as "good people" and deserving of a miracle or two. 

In 1995, Richard G. Scott said something everyone should know, whatever your challenges may be:  
When you face adversity, you can be led to ask many questions. Some serve a useful purpose; others do not. To ask, Why does this have to happen to me? Why do I have to suffer this, now? What have I done to cause this? will lead you into blind alleys. It really does no good to ask questions that reflect opposition to the will of God. Rather ask, What am I to do? What am I to learn from this experience? What am I to change? Whom am I to help? How can I remember my many blessings in times of trial? Willing sacrifice of deeply held personal desires in favor of the will of God is very hard to do. Yet, when you pray with real conviction, “Please let me know Thy will” and “May Thy will be done,” you are in the strongest position to receive the maximum help from your loving Father.
I'm happy to report that Caitlin and I never placed blame on God for what Holden had to endure, (I'd consider that one of our spiritual gifts for which we are humbly grateful), we didn't even dwell too much on the "why" questions, but we have had a paradigm shift when it comes to miracles, faith as it pertains to miracles, and the priesthood power that executes them. 

I had the sacred privilege of giving Holden 5 priesthood blessings during his short life. Most of which pronounced his health and recovery. Friends and family all over the world were submitting Holden's name in the temple prayer roll. Entire wards held special fasts for him. Spiritually speaking, we had all bases covered, and all the ingredients for miracle-producing faith and prayer. And...nothing. No improvement. No miracle. The only beneficiaries of the countless prayers seemed to be Caitlin and myself. 

Honestly, two years later I don't know that my faith has fully recovered in regards to healing blessings or miracles. I still don't know why we are to go to strenuously exhausting lengths to pray for miracles that are ultimately up to God's will and timetable to be realized. It's hard to express what I feel when others' healing prayers are answered in the affirmative. My heart is obviously glad for them, and I love hearing such illustrative examples of God's goodness, but deep in the recesses of my soul I still feel that tinge of envious heartache.  

Before I damper your faith too much, I want to remind everyone of a 3rd (perhaps the easiest to forget in times of trial) characteristic of God. The one I remind myself of when I begin to question God's will. It's outlined in 2 Nephi 2:24
But behold, all things have been done in the wisdom of him who knoweth all things.
He is omniscient. He knows and understands everything; Past, present, and most importantly, future. The reason why asking "why" leads you into blind alleys is that we do not, nor are we meant to, understand all the "why's" of life. Part of our experience and purpose of mortality is learning to lean on God, and not on our own understanding (Proverbs 3:5). 

Placing your trust in God is one of, if not the most vital and preliminary steps to true happiness and contentment in life. I beg of everyone who may read this, Trust God. Trust in Him enough to keep His commandments, especially the ones you don't understand, and especially the ones for which you don't easily recognize the correlated blessings. Have a hard time keeping the sabbath day holy? Trust God. Don't understand why daily scripture study is necessary? Trust God. Trust in Him enough to submit your feeble will to his. It's the greatest and only gift you can really give Him and he'll compensate you 1,000 fold. 

When you are in complete, dark, abysmal despair, trust God. Remember; God is omnipotent, God is omniscient, and God has an infinite and unfathomable love for you. Given these 3 facts, and I know that they are true, there is clearly no one and no thing better to believe in. 

I do not expect in my lifetime to learn why some live and some die. I do not expect in my lifetime to "get over" losing Holden. To not miss him miserably when he should be turning 2, 5, 10, 20, 40 years old. It won't happen, and that's okay. It's okay because I trust my Heavenly Father. He knows why. And because he knows why, I don't have to. He provided a way for us to be whole again. Our family is not incomplete because Holden is gone. He is still around. And he is always forever inseparably ours. One day, and we pray every day that that day is not far off, we will physically hold him in our arms again. And I owe every single ounce of that truth to my Heavenly Father, His perfect Son, and the covenants that they've been good enough to allow me to make with them. My heart hurts for people who have been through what we have without knowing what we know. Trust in God, and partake of His goodness. 

“Faith in the Lord is trust in the Lord. We cannot have true faith in the Lord without also having complete trust in the Lord’s will and in the Lord’s timing. As a result, no matter how strong our faith is, it cannot produce a result contrary to the will of Him in whom we have faith. Remember that when your prayers do not seem to be answered in the way or at the time you desire. The exercise of faith in the Lord Jesus Christ is always subject to the order of heaven, to the goodness and will and wisdom and timing of the Lord. When we have that kind of faith and trust in the Lord, we have true security and serenity in our lives.” ― Dallin H. Oaks

Monday, May 26, 2014

Day 7 - 05.26.2012

As things in the NICU grew more difficult to handle, support grew stronger from family, friends, strangers, and Heaven. Holden was not recovering from the surgery. He had a distended bowel, was in need of nutrients, and became anemic from all the blood draws and tests. Several multi-hour attempts were made to put in a PICC line (a longer term IV) before a team finally succeeded. Holden was given a blood transfusion to restore the blood he had lost from the tests.
The overwhelming heartache we were feeling for Holden was counter-balanced by the overwhelming amount of love and encouragement extended to us through prayers, fasts, texts, calls, and social media. Even the nurses who worked on or near Holden would often tell us how special they thought he was. Apart from these sources of strength, God somehow arranged for one of us at a time to have the capacity to care for the other. Caitlin and I would practically take turns having emotional meltdowns while the other would encourage and uplift. Each of us has acknowledged that we would not have been able to function otherwise.

“To be cheerful when others are in despair, to keep the faith when others falter, to be true even when we feel forsaken—all of these are deeply desired outcomes during the deliberate, divine tutorials which God gives to us—because He loves us. These learning experiences must not be misread as divine indifference. Instead, such tutorials are a part of the divine unfolding.” -Neal A. Maxwell

Sunday, May 25, 2014

Day 6 - 05.25.2012

Sleep deprived and anxiety levels running at new highs, we struggled emotionally through this day. Holden grew increasingly unresponsive after his surgery, and could barely get a cry out. After a terrifying bout of apnea, the doctors in the pediatric ward determined Holden would be better off continuing his care in the NICU. His transfer to the unit was chaotic as he stopped breathing again before arriving. Caitlin and I were helpless as what seemed like a dozen nurses and doctors came swarming around Holden. Amid the frenzied voices of the staff, Caitlin clenched Holden's burp rag in her fists as the NICU chaplain tried to assuage our terror with a prayer. As our shock subsided, we felt the weight of the situation set in. We wanted to get our son out of there as soon as possible.
We spent the rest of the day at Holden's side with two chairs pulled up to his bassinet watching as an intubator, several IV's, and monitors were hooked up. The nurses insisted that we get some rest. We knew we needed it, but were unwilling to part with Holden. After they heard our plans of sleeping in shifts in the family waiting room down the hall, the hospital arranged for us to stay in a room in the NICU about 20 feet from Holden. It had a pullout bed and a small bathroom and was usually used for mothers from other islands taking their children home. Though it was a burden to be away from our son at all, it was a blessing to get some rest knowing that Holden was nearby.

Day 5 - 05.24.2012

Moments before delivering our 4 day old son to the anesthesiologist to prepare for gastrointestinal surgery. Holden's X-rays revealed a blockage that concerned the surgeon enough to start prepping the OR immediately. It was following this procedure that the surgeon told us in a private waiting room that he believed Holden had Cystic Fibrosis. trying to break to Caitlin the ramifications of this diagnosis was nearly impossible. Our entire world came crashing down in an instant.
Later that night I expressed our utter devastation to our visitors, Bishop Murdock and Conor Riley. Knowing so early that our son would not have the health to serve a mission, may not ever get married, nor have children of his own was hard to digest. Instead of looking forward to these events he would be fighting to survive to adulthood. I felt like the greatest joys life has to offer were taken away from him. As I began to sob, Bishop Murdock asked me what kind of family my cousins with CF had. I understood right away why he asked. He knew that they would be one of the strongest, most loving and united families that I knew. They are. He asked Caitlin and I if we wouldn't be willing to have a special family like theirs, if we wouldn't be willing to be nurses to Holden, and take him to his doctor visits, and make sure we were doing all we could to keep him as healthy as possible. As quickly as our family vision had been taken away, Bishop Murdock's inspired words replaced it with a bigger and better one; one that involved sacrifice, heartache, and a complete dependence on our Heavenly Father.

Day 4 - 05.23.2012

Holden went through so much so early. Watching him be subjected to several painful pricks, and tests really allowed our parental instinct to kick into overdrive. He would be so frantic and upset by the nurses, and then instantly calm down as soon as we could scoop him up to soothe him. I began to understand this day how God feels when his children suffer; a type of love I would otherwise be unable to relate to. We haven't had too many conventional parenting experiences yet, but we know what it feels like to want more than anything to trade places with your hurting child.

Day 3 - 05.22.2012

A happy day for us. We got to bring Holden home and experience normal life with him. It's so strange to look back on videos from that day knowing what we know now. We were just SO happy and didn't want a thing to change. Even being completely unaware of what the coming days would hold, we treasured every moment together. We were absolutely smitten with our boy. I (Caitlin) put him down just long enough to snap this picture of him in his crib and then picked him right back up to snuggle again.

Day 2 - 05.21.2012

Taylor and Jack were the lucky cousins that got to hold Holden, but it's been remarkable to witness the impact he's had on all of his cousins, the majority of which did not get this privilege. Through all the letters, drawings, poems, prayers, singing through sobs, and graveside gifts of adulation, it's no doubt in our mind that each cousin has a very close connection to Holden, and he to them. Angel cousins are the best!

Day 1 - 05.20.2012

Taken a few hours after birth. Holden had me so captivated that I didn't even budge from this spot when the nurse came in and found Caitlin had passed out in the shower. Every moment with this boy left a permanent impression on us that pulls us forward, and reminds us every day that we can be a little better, a little more compassionate, and more eternally focused. In our family, May 20 - June 4 is dubbed Holden Days. Days in which we remember that "those mortals we meet in parking lots, offices, elevators, and elsewhere are that portion of mankind God has given us to love and to serve." You are invited to participate in Holden Days by performing selfless acts of love and service. Acts that will cause others to smile and tell a friend how their prayer had been answered that day and how their faith had been restored. We've been the recipients of such acts over and over again. By uplifting and inspiring others, Holden's influence lives on.
We love you, Holden. Happy Birthday, Bud. #HoldenStrong

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