May 2, 2013

Shepherd's Adoption Story Part III

The other day I was talking to my cute sister-in-law about Shepherd's story and it sparked a memory from my past that painted a strong visual of how I have been feeling as of late. As a 19 year old girl I spent a semester abroad in Honolulu, Hawaii attending the University of Hawaii. My friends and I had worked hard to fit in, so we were excited to be invited to a "locals" beach in Kaneohe called Sandy Beach Park. It's known for strong currents and big swells that crash close to the shore, which makes for good body boarding, but also means it's ranked high risk for injuries and can be dangerous. I was on swim team in high school and was a very confident swimmer, so naturally I headed out into the water without hesitation. The waves were big, and although I was uneasy, I managed to make it past the break and into the deeper calm of the ocean for a time. It wasn't until I decided to get out that I realized how strong the current was and as I fought to swim to shore I began to feel exhaustion creep in. I finally neared the beach, my toes reaching for the security of the sand below, but as I stretched to get my footing the waves quickly overtook me and I found myself caught in the rolling break of waves crashing violently into the shore. At first I was calm, if not a little embarrassed, but it quickly turned to panic as I felt a total loss of control overtake me in the powerful and relentless pounding of the waves. At one point I felt the top of my head hit the sandy bottom as I was flipped effortlessly head over heals. I clamored and gasped for air when I could, but I could not escape the water that ceased to pour over me with crushing force. For a moment I would catch my footing and try furiously to get out, but the waves were too big and all my efforts were so powerless in comparison. I was losing the battle and I didn't know how to get out of it. I was so tired and scared by the unexpected pounding I had just received that I ended up swimming back out into the deeper ocean just to rest a moment and catch my breath. A friend, and local, swam over to me and asked if I was alright. I desperately explained to him that I was struggling to get out of the water and that I was getting really tired. With a puzzled look on his face he asked me why I had even tried to swim out in the middle of a set in the first place. A WHAT??!!! This landlocked mountain girl had no idea that waves come in "sets". Apparently, in between "sets" there is a calm, the perfect time to make an exit without risk of drowning. I stopped fighting the waves and, through new eyes, began to see the natural flow of the ocean. I aligned myself and calmly walked straight out of the water and onto dry land. 
What it all came down to: Timing. 

The day after Easter Sunday I was told that a transport team from Utah would be picking us up and taking us home on Tuesday morning at 11:00 AM. I eagerly packed my suitcase, said my good byes to all our new friends in Texas, and took the 45 min. drive to the hospital one last time. Stephanie tearfully dropped me off and I waited in the NICU for the transport team to arrive. Instead the nurse informed me that there was a problem with our insurance approving the transfer and I would need to wait for their go- ahead. Every single day for an entire week I was told the transport team was coming in the morning. Every day that went by I felt more and more desperate, forgotten, and alone. I squatted in the hospital and sat by Shep's bedside intermittently reading and praying for a miracle. I pestered the heck out of our insurance representative, who was very sweet to me, but also a little disturbingly vague. I felt I was constantly on the verge of saying the wrong thing, the thing that would give them a reason not to come. It was general conference weekend, Saturday morning, and I was longing to be home with my family more than ever. My mom and dad were in Utah and I just wanted to be in my jammies, listening to the Prophet, and eating eggs benedict. I was so tired of fighting and I was hitting a wall, that wall that makes you feel totally helpless and unheard. So I prayed. Hard. I even told Heavenly Father that I was wearing my last clean pair of underwear and that I really needed to go home TODAY. I sat up and had an epiphany. Call Primary Children's and ask them personally why they aren't coming. I called. The poor nurse did not want to talk to me, but I wouldn't let her off the hook until I personally talked to someone that knew the answer. Finally...the answer? The insurance had, in fact, approved the transport the day before but had forgotten to give the transport team the approval code. A six digit number stood in the way of Shep and I getting home in time for conference Sunday. There was a two hour window on that Saturday morning in which our insurance company takes calls. I called just in time and they gave me the number. Two hours later the charge nurse at PCMC called me back with the unbelievably good news: the transport team had left 45 minutes earlier. Now, here is where this small part of the story gets me every time and why I am including it in this diatribe. In my mind I knew that it would have been sorted out by Monday or Tuesday and that, relatively speaking, it would have been perfectly fine, but here is what I love so much about this small difference of a few days. It mattered so much to me. Either way, they were coming, but I was so tired and broken spirited and the Lord in all his glory granted me the most tender mercy. He cared that I wanted to be home then and there, with my family, and for Pete's sake, with clean undies. Never before has it been so clearly impressed upon my mind how much the Lord loves me. The Lord spelled it out to me in that moment: I love you, I care about you, I know you. I do not doubt it for a moment. 

Conference Sunday was exactly what I had imagined. Ben, Isla, and I made breakfast and cuddled together on the couch to hear the word of God through the Prophet and his Apostles. We drove to PCMC during the second session so that we could be with Shepherd afterwards and my parents wanted to meet us there. We sat in the parking lot and listened to Elder Holland's inspired talk. Tears flooded my eyes as he spoke these words about a father pleading with the Savior over the well being of his son:

"With no other hope remaining, this father asserts what faith he has and pleads with the Savior of the world, “If thou canst do any thing,have compassion on us, and help us.3 I can hardly read those words without weeping. The plural pronoun us is obviously used intentionally. This man is saying, in effect, “Our whole family is pleading. Our struggle never ceases. We are exhausted. Our son falls into the water. He falls into the fire. He is continually in danger, and we are continually afraid. We don’t know where else to turn. Can you help us? We will be grateful foranything—a partial blessing, a glimmer of hope, some small lifting of the burden carried by this boy’s mother every day of her life.”
“If thou canst do any thing,” spoken by the father, comes back to him “Ifthou canst believe,” spoken by the Master.4"  

We headed into the hospital with a renewed faith to see our very sick little boy. Ben asked my dad to help him administer a Priesthood blessing. It was a powerful and sacred blessing that I would like to keep private, however, I would like to share that in this blessing it was said that Shepherd would be healed predicated on the faith of those present in the room. In that moment Elder Hollands words echoed loudly through my mind, 
"Lord, I believe."

A week went by and Shep continued to get worse. We received some devastating news that had unknowingly been withheld from us at the hospital in Texas. Shep had tested positive in 3 separate tests for a deadly genetic immuno-deficiency syndrome called SCIDS. It would mean that Shepherd would not be getting better and that we would need to consider his quality of life and the romoval of life support. PCMC did a follow up test and it had also come back as positive for SCIDS. We were beside ourselves with grief. After all we'd been through, how could it have all been for naught? Our despair was overwhelming and I felt more drained than I could have thought was possible. One more wave crashing down on us. I didn't know how to talk about it, so I told only close family members and then retreated into my cocoon. My mom recruited extended family members to put our names in the Temple and fast and pray for us. A mighty effort put forth our family names in every temple and prayer circle in the west and beyond. Literally thousands of prayers were being offered up for our son. 

                            Source: via Kindle on Pinterest

A few days later the Immunology Specialist at PCMC came to run more tests in order to establish our course of action. Every single test came back negative for SCIDS. To this day the Immunologist is completely baffled as to how it is possible that Shepherd had 4 false positives from 2 separate hospitals and that currently his tests are completely healthy. Baffled.

The very next day the head of the Cardiology Department, Dr. Day, called from vacation in Barcelona, Spain. He was feeling inspired to suggest a different and uncommonly used type of exam that he wanted performed on Shep. On the phone, he talked the cardiologist through it and sure enough they found it, Shepherd had a very rare and dangerous heart defect called an AP Window linking his aorta and pulmonary arteries. We finally had the answer. Shepherd underwent open heart surgery last Tuesday and is doing amazingly well for only a week and a half out of surgery. His incredible surgeon, Dr. Kaza, said that Shep's heart was under such distress that he was doubtful that Shepherd would have lived for much longer without the surgery. They had found it just in time. Shepherd is getting stronger every day and we are hopeful he will be home soon. He will still have some health issues down the road, but they are treatable and, comparatively, less of a worry. We love him more everyday and our time serving him, worrying over him, and praying for him has only served to strengthen our bond to him. I will always be grateful that this journey has given us that kind of strength and love as a family.

When we started this adoption, two years ago, I promised that you would see a miracle. After our failed adoption, maybe with slightly less conviction, I again asked you to keep watching. A miracle would surely come. I prayed for it and I believed that it would come, but I certainly wavered many times in my faith while waiting on the Lord's timing. I have even felt ashamed for making such a public statement, who was I to speak of miracles? Maybe that was not the Lord's plan for me? Maybe we would disappoint all those who had been offering ernest prayers and hopes for our family and their faith would waver as well? Instead, I am overwhelmingly humbled by the many, many miracles the Lord had in store for us. I want you to know that His plan for us is infinitely more grand than anything we could imagine for ourselves.  His timing is perfect and life saving and has taught us invaluable(though hard)life lessons along the way. I have seen service and Christ-like-love come to our rescue at every turn. In every crisis there have been angels coming to our aid. I testify of miracles, of the Saviors rescue and love for us in times of trial. I testify of tender mercies and angels attending our way. I testify of the power of prayer. The knowledge of it is eternally burned into my heart.