stories from the oaks | allison
healing generational devastations. binding up wounds. building up. claiming land in victory. standing victoriously on the battlefields of life. proclaiming freedom from bondage, from captivity. comforting those who mourn. anointing with sweet smelling oils. we are the oaks of righteousness. a planting of the Lord. we are deeply rooted. we stand firm. we share our stories of grace and healing and restoration and revival and beauty.
these are the stories from the oaks.
allison gauvin's story
I met my husband in my junior year of high school in gym class. He was a senior, the cute transfer who would skip his English class to play kickball in mine. We became good friends, flirting and hanging out until he graduated and left for Hawaii.
Flash forward three years, I had decided to live at home my first semester of my sophomore year of college. My mom forced me to bring my little sister to the grocery store, she needed paper bags to cover her text books (remember those days?). I was wearing boys basketball shorts, glasses, looking just adorable. I saw some moron smelling a pineapple in the produce section, but once he came into focus I realized it was Ben. We chatted for a couple minutes, exchanged numbers and I thought that would be it. A few days later, I was on my way home from a sorority rush event, Ben called. He wanted me to come over to his friend's house for a little "welcome home from boot camp" party. When I arrived, Ben was wearing a water bottle belt that runners wear, each bottle filled with a different liquor. Needless to say he needed a ride home.
I drove him home to a money pit-esque Victorian house where his dad was smoking in his underwear on the front porch. As Ben changed into his pjs, my first thought was..."eight weeks of 10 hour workouts have been good to him". I thought this sleepover would simply mean another notch in my bedpost. The next morning, I woke to Ben grilling egg burritos. The house had no oven, so every meal was cooked outside. I never left after that, I would drive home from school or work and always end up in his driveway. My mom called it "playing house." One day I came home to a toothbrush in the bathroom and an empty dresser drawer in our room.
Five months after that first night, I walked into Planned Parenthood.
When the nurse came in and told me the test was positive, she nervously began telling me my options. I never let her finish. I was excited. I didn't want to finish school, I wanted to start a family. I bounced out of the exam room, walking towards Ben I whispered "we're pregnant".
Then, we broke the news to our families. His mom was pumped, my mom cried, my dad asked what I was going to do about "it," and my dad's father banned me from his house until I was a married woman. Ben proposed the night of Mother's Day. We were laying in bed, it was dark and quiet. I honestly don't remember what he said, only that I said yes and he slipped his mother's engagement ring onto my left finger.
I was twenty years old and twenty weeks pregnant.
Three years later, I waddled into my non-stress test at 38 weeks pregnant with our second child.
From our first appointment with him and hearing the heartbeat, I knew that something was wrong. We struggled for a year after Jules was born to get pregnant again and when we finally did conceive, I miscarried at 10 weeks. Because Ben was deployed to Afghanistan, we couldn't try again immediately. Once he came home, this pregnancy happened fast - two weeks later.
This pregnancy had been tarnished by unknowns, ultrasound after ultrasound finding small issues. First, I had placenta previa (my placenta was low and blocking my cervix). Then, there was hydronephrosis (extra fluid in the kidneys) at the next appointment. Finally, at 32 weeks, he was IUGR (intra-uterine growth restriction). Beckett had stopped growing, despite all the subtle problems I was reassured countless times that he would be fine and everything would be fine.
The lack of growth prompted an induction at a larger hospital equipped with a NICU two weeks early, just in case. I spent thirty hours in labor and opted for the epidural. As I laid back to let the medicine kick in, Ben, my sister Mary, and my best friend Kaitlin were laughing in the corner. After all, we were hours away from welcoming our baby into our family, a baby we had waited for. Finally we would get to hold him and I would know for sure that he was fine.
As soon as my head hit the pillow, my heart rate dropped along with Beckett's. The nurse slapped an oxygen mask on me and started rolling me from side to side, within 30 seconds half a dozen doctors strolled in and wheeled me out. I was going to have an emergency c-section. I remember starting to shake, my adrenaline kicking in. I glanced at Ben, told him to wait for me and that I loved him.
They wheeled me back to my room after the surgery, I tried to nurse Beckett. He was so sleepy, he wouldn't latch on. The nurses had to bring him to the nursery multiple times, his temperature was low. Every time I woke up from sleeping, he would take another turn for the worst and eventually, he ended up on a ventilator. Finally, 18 hours after coming into this world, doctors decided to transfer him to Boston Children's Hospital via NICU ambulance. I was discharged less than 36 hours after my c-section, my husband drove me up to Boston in the rain.
Beckett lay in a private room in BCH, machines helping him breathe less than 48 after I gave birth to him. He had lost half a pound, weighing only 4lbs 11oz. He was being pumped full of drugs, a revolving door of doctors and specialists offered their opinions and condolences but no conclusive answers.
That Sunday evening Ben and I opened a conference room door, eight maybe ten specialists, neonatologists and nurses sat around the table. Our nurse practitioner sat at the far end of the table, her eyes were shining too brightly for us to be receiving good news. Ben and I sat closely, our shoulders were brushing together. Dr. Neilan, who would later save Beckett's life on more than one occasion, started speaking weaving together a long explanation yet dancing around any concrete information. He is infamous for his drawings, anything can become his canvas. I still have the first picture he had for us, to explain that our son's life as we knew it was over. "Severely retarded" and comfort measures only were mentioned. It took more than 60 seconds for those thoughts to register. Ben burst into tears and started to yell, I couldn't open my mouth-the words weren't there. I asked if they could explain how severe the damage would be, Dr. Neilan stated the odds of Beckett walking, talking, even making eye contact were slim. Who knew that discussing how a newborn was going to croak could take so long-we spent over an hour making very clear that we were in this for the long haul, we wanted to use any means necessary to keep our son with us for as long as possible. My oxycodone (given to me for the c section) had begun to wear off, I could feel the incision that had been sliced into my abdomen days earlier start to throb. We had never taken ourselves too seriously, everything about our relationship just fell into place. I now felt myself falling into a deep pit, I couldn't climb out so I planned to tunnel to the left or right until I found the light again.
In the hospital, we were staying in the parent sleep spaces: windowless closets. Ben slept on the floor so my incision could heal. I remember having to do all my postpartum care in public bathrooms. After our meeting with our medical team, we went back to our room so we could call family members. Having to explain over the phone that because of Beckett's genetic mutation (a recessive gene that both Ben and I carry) he now had metabolic acidosis (pyruvate carboxylase deficiency-later we would learn that Beckett and Clementine do not have PC deficiency but a condition similar to it, they are the only little ones we know of with this mutation) which also causes leukodystrophy (white matter brain disease) and in turn the brain disease causes global developmental delay. Doctors gave him a lifespan of seven days, with such little time we wanted to celebrate his life no matter how brief. We invited our friends and family to his baptism. It would be held the next morning at his bedside.
One week turned into two and then three. Beckett couldn't coordinate suck and swallow, so a PEG tube was placed (later a Mic Key button replaced it) for feeding. He failed his hearing test. His heart had an extra pulmonary artery and one of the pulmonary arteries was enlarged. Every part of his body had suffered damage from the high acidity and ammonia inn his blood. Dr. Neilan with the pharmacy concocted a drug plan, making the medications Beckett would need to survive from scratch. Unfortunately, the medication can not cross the blood-brain barrier so the brain disease is still progressing today. We were learning everything we could about Beckett's care so that we would be able to take him home. We wanted so badly to be a family, even if it was for a short period of time.
At seven weeks, we were moved from the NICU to the floor for discharge. Home was in sight! The same day he was moved, Ben and I received tickets to a Red Sox game through a generous donation to the hospital, the game was less than two miles from the hospital. We left Beckett mid-afternoon, he was resting. When we returned less than four hours later, I picked him up out of bed. He was limp, pale, rapidly breathing. We yelled for a doctor, immediately he was rushed back to the NICU. He had gotten sepsis, a blood infection, the infection got in through his PICC line. The PICC is used as a more permanent IV, because of the central access it is more susceptible to infection. He went back onto the ventilator, almost dying a second time.
Ten weeks after being born, Beckett was released from the hospital. His diagnosis is considered fatal, so hospice was called in to do our home nursing care. They came once a week to do vital signs, we also began receiving early intervention services at home. We fell into a rhythm, our own kind of normal, between "regular" activities, appointments with 14 different specialists and therapy at home. Ben and I agreed that this was now our life, we couldn't change it so we needed to adapt and move on. We grieved for a time, but crying didn't change anything it only made things harder. I shy away from negativity now, trying to look for any silver lining I can find-it helps on the tough days. My children depend on me and feed off of my energy. They watch and imitate how I respond to life's challenges.
We agreed to never compromise our family time, if we did something it would be together. We would make sure that all our children could participate to the fullest extent, we did and still do try go out regularly. I want my children to experience the world, to celebrate every part of life. We do things a little differently and there is a lot of prep before we leave the house, which is the key to success. I have changed a g-tube in the shoe section of Target, Ben has carried a wheelchair up two flights of stairs so Jules could go to the movie theater, we have baked and decorated cookies at the hospital because Beckett was in the MICU the week before Christmas. I don't ever want to keep my kids from doing something because it would be too much effort on my part. This past winter was the first time I told Jules we couldn't do something because of Beckett's wheelchair, it had snowed at the playground and I didn't bring a shovel. It absolutely broke my heart, she should never have to miss out because I wasn't prepared.
I have four children now, two boys and two girls. Two typical and two affected. I was never close to anyone with a disability, this has opened my mind and my heart. I have learned so much from my children, they are not a burden but truly a blessing. Each has taught me something, I have become more patient and compassionate. We have met and made friends with amazing people from all over the world. We have been able to experience so many wonderful things. If we had chosen a path without Beckett and Clementine, our lives would be in a totally different place, and I'm not sure I would want to be there. I am so blessed to be where I am today.
