When she was only 32 weeks grown London Aubrey Rose Martin was born into this world, along with her twin, at a tiny three pounds, but pink, crying and breathing with a might all her own. At the time we believed that the hardest part of our journey was over and praised God for the miracle of their survival – something that literally every doctor during the pregnancy told us likely would not happen. We had prayed, and hoped, and kept our eyes focused on the only One who could hold them safely while we waited, and He was merciful to pass them on to us. They had defied the odds. Despite their growth differences and blood flow scares and too-small umbilical cords they had survived to 25 weeks, then 30, and then 32, a point at which a vast majority of the premature complication risks have passed. Hearts light with hope we delivered our babes into the world and breathed deep sighs of relief; we could never have guessed that it was only just beginning.
Two days after she was born the nurses in our hospital’s NICU detected a heart murmur. Ever the one-step-ahead-mother, I’d done my research and knew that this was not unusual for premature babies, and is usually an issue that resolves itself over the next few years. Optimistically I believed that to be the case with her as well. Nothing prepared me for the news I got sitting in that room the next day; my daughter had pulmonary stenosis, a congenital heart defect that would definitely not fix itself. Three weeks later my sweet little baby girl underwent a procedure called a valvuloplasty – where a tiny catheter is threaded through an artery into her heart, and then a balloon is inflated to stretch the valve. When it was done we were told how beautifully it went and how successful it was. We were told that it was really a pretty miraculous coincidence; how, when she was born, she had a small hole in her heart that was in just the right spot to allow extra blood flow through her valves where the narrow valve had restricted it. Had the hole not existed it is likely that her heart would have become stressed under pressure and we would have had to do an emergency surgery immediately; much more dangerous than the four weeks later which provided necessary growth to diminish some of the risks. If her valve hadn’t been narrow, on the other hand, it is likely that the hole would have caused an overflow of blood to her heart, again requiring immediate surgery. It seemed as though God did, in fact, know what He was doing after all. While we would come to find out that her valve didn’t stay as stretched as we thought originally, it still was considered successful and she has never had an issue from it since. We praised the Lord on our knees and thanked Him for delivering us through the hardest part of this journey as we knew it – again.
And yet here I sit two years later, in a pull out chair that I’m fairly certain is made of jagged rocks, next to that same little girl’s hospital bed for an entirely different reason.
When she was around 18 months old London began to gag on her food. At first it was only a few things and only occasionally, so it wasn’t something we worried about, believing she was just learning how to eat, but as time went on the gagging got worse. I started to think that maybe it was sensory, or maybe it was a learned behavior and we could train her out of it, so we tried for a while, but to no avail. It wasn’t until a few months ago that I began to realize something was really wrong, because she was gagging up practically everything she put in her mouth, including food she really loved and seemed upset about not being able to eat. I spoke with my doctor about it and she believed it was still sensory, because it didn’t fit the criteria of a normal disorder or disease, but my mommy gut wouldn’t let it go, and so I asked to schedule an x-ray and swallow test.
A few weeks later a CT scan revealed that she had a mass in her esophagus – and my heart nearly stopped beating. I remember my hands shaking as the kind voice over the phone patiently answered all of my questions as best she could, which was hardly at all with the limited information she had. All they knew was that it was a mass. The words kept flashing through my head; a mass, a mass. The first thing I thought, of course, was that my sweet barely-begun-to-live daughter had cancer. That Yahweh had given her to me only to teach me how to fully surrender to Him; that this would be my test; and I nearly had a convulsion. After all, hadn’t I said that He could have it all? Even my kids, if it came to that? I felt like God was calling me to make good on my claims now, and I was shaking where I stood.
“Not cancer, God, please!” I prayed and sobbed “Anything else I can handle, but please just not cancer!”
And so I fasted and prayed, and the people who have grown so intimately close to my heart fasted and prayed with me. People whom I loved but had never actually met in person dedicated time out of their own incredibly busy and stressful lives to sacrifice their comfort for the sake of my daughter. It would prove to be only the first of many times that they would blow my expectations out of the water, and my legs steadied a little as their arms, His arms in action, supported me.
A few days later we had a meeting with the surgeon who, to my great relief, assured me that what they were seeing was not cancer after all, but looked more like some kind of foreign object. The theory was that she possibly had swallowed something and her esophagus had walled it in with scar tissue, protecting itself from this unwelcome invader.
“Not cancer!” was all I could think. “NOT CANCER! WOOHOO!” See, everything else was peanuts to me, because as long as it wasn’t cancer I had nothing to worry about!
“It needs to come out” he said. And I fully agreed! Let’s do it! Book the OR! My guard was gone, I was completely at ease and “at peace” with whatever this was.
But it’s a funny thing about peace that’s not grounded in complete faith in Yahweh and His plan..
“But we need to talk about it first. This isn’t cancer, but it’s very serious.”
I sat up a little straighter. But it’s just something *stuck*, so just take it out and we’re done? Right?
But God wasn’t done teaching me. Teaching me that my faith in physical circumstances is misplaced. Teaching me that how *I* perceive my situations is so, so flawed. Teaching me that my daughter not having cancer does not mean that my faith isn’t going to be tried down to my core.
“It’s a very complicated surgery with a significantly high risk.”
Thump… thump… thump went my heart. I wasn’t prepared for this. I felt blindsided and in a horrible fog.
“What kind of risks?” I timidly asked
The doctor went on to explain… “Well, this lodged itself in the worst possible location. It’s not easy to get to. Her esophagus is too narrow to fit a scope down, so there’s no way we can do an endoscopy (remember this, because it’s very, very important). In order to find out how to proceed we’re going to have to make a huge incision from her ribcage back to her shoulder blade, and there are many major nerves in that area. If one of them is damaged it could mean she’ll need to be on oxygen for the rest of her life, or that she will need a feeding tube for the rest of her life, or that we will need to do reconstructive surgery on her stomach and diaphragm. She’ll need to be in the hospital for a month after the surgery to recover. I think I’m equipped to do this, but if I do get in and find that I can’t, I’ll back out and we can try a different route.”
My illusions of safety were shattered. I thought that if I could rest on science then I wouldn’t need to exercise my faith so much. But then we know how Yahweh feels about resting in anything but Him.
So the next step was surgery – do not pass go, do not collect two hundred dollars. We booked the OR for three weeks from that date and I left discouraged and heartbroken and terrified, and not entirely confident in my surgeon or his expertise in the area. If you’re talking about a surgery that could potentially leave my daughter unable to breathe on her own, “I think I can do it” just doesn’t sit well.
The news spread through my family and friends like wildfire, and when my aunt heard about the conversation we’d had she suggested to my mom that we get a second opinion. It’s something I’d tossed around but hadn’t committed to, but with this “confirmation” I felt like it was best. As it would turn out that feeling would be confirmed multiple times over from close friends, and so I knew that this was a God thing.
After a day or two of research I came to the conclusion that the Children’s Hospital in Boston was the best place in the country for the kind of surgery that London would need, and so I called that day and asked them to review her case for a second opinion. From the moment I connected with them I felt a peace that had, until that point, been missing. They were kind and quick and seemed so incredibly knowledgeable, and before I knew it her care had been transferred to their hospital and we were talking about dates to come out and do testing.
“This is what we do.” Confident voices assured me where questions about success and capabilities had previous resided.
So her testing was scheduled, and it had required a step of faith and a whole lot of prayer. Boston is expensive. Hotels are expensive. Gas is expensive. And to be frank, we were we’re broke. A borrowed credit card was used to pay for the expenses up front, and my dedicated hardworking husband logged hours upon hours of overtime to try and help offset the cost, knowing it wouldn’t be enough, but also knowing that we had to do this and were just going to need to trust His provision.
I spent the next weeks waiting filled with dread and worry and anxiety, imagining worse case scenarios in my head. Trying to imagine what life would be like in the hospital with a two year old who had been cut up one side and down the other; the excruciating pain she was going to experience, the sorrow of not being able to see my other daughter for a month straight, and worrying about who was going to take care of her. The days passed quickly and before we knew it it was late in July. We made the long drive from western New York to Boston.
The first day in Boston we did another X-Ray with the surgeon present who was able to detect the same mass, but while he could see there was something there, he couldn’t tell us what it was either. I had hoped for better news, but was given the same diagnosis as before, with the same treatment plan, the same surgery. He went over all the terrifying risks again, detailing his biggest concerns (her vocal cords), and his insistence that whatever it was was infected and inflamed and had to be cut out.
“I want to try and do an endoscopy,” he said.
“The other surgeon said it wasn’t possible, he said her opening is too narrow.” I questioned, but he assured me that we had to at least try, and that if we could manage to get some kind of picture of it then it would allow for a potentially safer surgery, so what could I do but agree?
The next day we had a pre-op appointment, during which the doctors detailed the procedure to me and asked for my permission to allow them to “treat” the condition if they could while they were in with the scope. “I have no hopes that this will do anything but provide us information. Based on what we’ve seen there’s so much scar tissue around it that we’re really going to have to operate, but we need your consent just in case we create a tear and need to repair it.” So I signed, and then we went out and spent the rest of the day just relishing a few hours of stress-free family time exploring downtown Boston.
That night I received a call from the hospital; something was wrong with my insurance, and the company was denying my claim for this procedure.
Great. Just what I need, to come all the way out to Boston and spend all this money we don’t have for nothing.
I was told that the hospital was submitting as much information and documentation as possible to the reviewer in hopes that she would overturn the denial and approve the procedure, but at this point we wouldn’t know until the morning.
The next morning came and still no approval. The surgical team told me that they had to approve the claim by 9 a.m. in order for us to go ahead with her scheduled time at 10:15, otherwise we were going to need to reschedule for another week, if they would approve it at all.
7:30 am… 8:00… 8:30… and still nothing, but now it was time to leave for the hospital if we hoped to make it in time for her appointment. I asked the nurse what I should do, and she left it in our hands. Either cancel now, since it clearly seemed as though we weren’t going to get the approval, or make the hour-long drive and pray that it got approved by the time we got there. We debated and hemmed and hawed but in the end decided to take the chance.
It was mere minutes before 9 when I got the call; approved! Phew! It wouldn’t be all for nothing after all!
We got to the hospital and my husband kissed London goodbye while I took her in to the pre-op waiting room. A few moments later I met the surgeon who would be performing her endoscopy, and he spent the next ten minutes detailing the risks and objectives again, but this time there was no worry at all; suddenly I found that I was experiencing an inexplicable joy, and I chose to hold on to it as tightly as I could for both my sake and the sake of my little girl. So I carried my heart into the operating room and sang to her as she fell asleep, then I went off to wait and pray.
I know I was being attacked because thoughts of things going wrong kept forcing themselves on me – her torn esophagus, damaged vocal cords, my London with a hole and tube in her neck. They tried to shake me, but for the first time in weeks I had the peace of Yahweh – a peace that surpassed any understanding of my own. It was as though something inside me knew the plans He had and was giddy with anticipation waiting for my eyes to see it revealed.
About thirty minutes later the surgeon came into the waiting room, I assumed to tell me how everything went, and as he walked towards me he pulled his hand out from behind his back and handed me a small plastic jar. This jar.
I stared blankly for a moment, waiting for him to say something, not understanding. Maybe he had the wrong patient? And then it hit me, and my eyes widened in disbelief as he began to speak “Here’s the culprit!”
This was the foreign object that a myriad of medical geniuses agreed could only be extracted via an intense and complicated surgery; here, in my hand, while my daughter slept down the hall whole and intact, nary a scalpel in sight.
And I sobbed.
“I thought you said this wasn’t possible! I thought you said this couldn’t happen!” I exclaimed, probably too loud in a room full of waiting parents, but I didn’t care. I wanted to jump up and down and scream with praise and excitement and joy!
“We didn’t think it was. There was so much tissue around it, it shouldn’t have. We shouldn’t even have been able to see it, but it just pulled out like nothing.” And I stared at him with tears streaming down my face while he went on to explain that it wasn’t the end of the road, they still needed to make sure the infection and the hole healed, but I didn’t care. I was holding a miracle in my hands!! This meant that she didn’t need surgery! The surgery that threatened to steal her breath and her voice and her health – God had completely transcended it! He literally delivered this thorn into their hands! I hit my knees and praised my Abba for all I was worth before rapidly messaging my husband through blurry eyes and breathless laughs. Moments later I went back to her in the recovery room and it was all I could do to not hug everyone in the room, and I couldn’t take my eyes off my brave, beautiful, princess.
It took me a few hours to realize how He had allowed this all to play out. Had I not listened to the urging inside me to call another doctor this never would have been possible. The surgeon at our home hospital had refused to even try, and it made me sick to realize that he was about to cut her in half for nothing. The object that was lodged so far in scar tissue that it wasn’t even visible on the scan slid out easily during a scope that many believed to be physically impossible without causing serious damage.
My joy was running over, I couldn’t can’t stop smiling and hugging the people around me who helped care for her, but God wasn’t done yet. Moments later my husband called me to tell me that our some of our friends had felt it on their hearts to support us, and over the next few days we would receive gifts from some of the most amazing people on Earth that would cover our hotel expenses and those we were incurring over the next few days. People we hadn’t seen in years, and some we’ve never even seen at all, who love us so much that they gave truly of themselves to support us and love us the way they could. We had planned to drive back home on Saturday morning, but because of this procedure we were required to stay an unexpected few more days, and Yahweh provided for our need before we even knew we’d needed it.
What can we do in the face of such miracles but fall on our knees, let the tears run freely, and shout from the depths of our soul of His wonders and grace?
How sweet is this grace, I am drinking deeply.
As I sit here and type this my miracle baby is asleep in her hospital bed, completely herself, and you would never know that anything was ever wrong with her.
This story, her life, is about miracles.
Sometimes in our lives Yahweh uses trials and hardships as lessons, to teach us to grow, to show us how to walk through the rain and the valleys to the other side so that we emerge stronger in His hands.
But sometimes He lets us walk in the shadows for the sole purpose of displaying the brilliance of His beauty and light. Sometimes His plan is to shower us in blessing and clothe us in joy, simply for the sake of loving us.
“If you then, who are evil, know how to give good gifts to your children, how much more will the heavenly Father give the Holy Spirit to those who ask him!” Luke 11:13
It’s taken me some time to adjust. For weeks and weeks I’ve been mentally preparing myself for the possibility of needing to fully rehabilitate my little girl, and now we’re going to be leaving this hospital in less than 24 hours with a child who has never felt more fully alive.
And neither have I.
Reposted from Whatever is Lovely