One Dreamer’s Story

“You may say that I'm a dreamer, but I'm not the only one
I hope someday you'll join us, and the world will live as one”
-John Lennon

Our nurse, traveling with us to Flagstaff so we could take our son on his first trip.

I have a medically fragile son that requires around the clock nursing care. My son’s day nurse has worked for our family full-time for almost 2 years. She has become a back bone to our everyday life, and of course we are very close with her. Here is part of her story.

What do you do for a living? What makes your job challenging and unique?

I’m a pediatric home health nurse. I have had to save my patient’s life more than 100 times. It happens almost every day because he is a critical patient. I think I go above and beyond in my work because I’m very emotionally attached to my patient. It’s more than a job to me and more than a paycheck. It’s his life and I want to make sure he gets the most out of every day. I like to challenge myself and him with everything from feeding skills to one extra minute of therapy. I like helping him achieve those little goals.

Where are you from and how did you end up in the United States?

I was born in Mexico City. I was brought here when I was 7 years old by my parents. My memory can only go back to the time we crossed the desert. That’s when my life started. I don’t have memories of living in Mexico and have only heard stories from my family. We walked 3 days and 2 nights in the desert and I didn’t understand what was happening. My parents were scared and I didn’t understand why we had to hide from cars and sleep outside under leaves. I didn’t understand why we were walking and carrying our water. I remember my dad telling me when we got there I could have an ice cream. I could never have an ice cream in Mexico. I did end up getting the ice cream from a nice man at the first McDonald’s we saw.

Why did your parents bring you here? Why didn’t they come legally?

My parents wanted me to have a better future. Initially they thought they could just work, save money and return to Mexico. They never got to go back. They saw I could have a better life here and didn’t consider the obstacles I would face later in life. I have a 7 year old sister and a 17 year old brother and they were both born here and are citizens. They have never been to Mexico.

There was no money or resources to come legally. Financially, my parents were not in a position to afford a visa. If they were in a good financial position, they would have never left their families, community and where they were raised to find a better future. There was no path to citizenship for them. There is no way to become a citizen by applying on your own. It’s much more complicated than people understand.

What is DACA and how did you become a recipient?

DACA is Deferred Action for Childhood Arrivals. It’s a program that started in 2012 and you have to qualify for it. You have to have arrived in the U.S. before the age of 16 and you also have to be less than 30 years old. There were many specific qualifications like background checks, finger prints, listing every place we have ever lived, proving we were here since we were 16 and that we had never left, we had to go to school and have no criminal record. Once you were approved for all of that, it deferred you from being deported. It also gave you the right to have a driver’s license. You pay a fee of $465 ever 2 years for the permit and have to reapply after those two years. The permit gives you the right to work here legally.

I became a recipient when I was 24 years old. Since I was in college before that, I was not able to use a college scholarship I received. I also had to pay out of state tuition in cash. I could not receive any state benefits, scholarships or grants. I know people that were not able to qualify for DACA. The qualifications are very specific and rigorous. My husband could not qualify because he arrived here 6 months after he turned 16. It’s very difficult to become part of the program.

Do you pay taxes?

Yes I pay taxes just like a citizen. My friends and family that cannot work legally also pay taxes. They have an ITIN (individual taxpayer identification number) that is similar to a social security number that is issued by the IRS. If you don’t have a pay stub or W-2 you file taxes with a specific form. Many people want to do the right thing. They want to live a life just like everyone else. In a way, I think it makes them feel a part of the community. It also gives them hope that they could become legal citizens. It’s proof that they are “good” people and the only bad thing they did was come here illegally for a better life. They want to prove that they follow the rules.

Since you and your family pay taxes, you must be able to receive benefits like a citizen correct? Like financial aid, Medicare, etc?

No. With DACA, we are not allowed to use any federal money. If we want to go to school, we have to pay out of pocket unless you get a private scholarship. We cannot receive FASFA. My parents cannot receive Medicare and have no health insurance. We pay into those programs, but cannot receive any funds.

Once I went to the emergency room because I had a traumatic miscarriage and had to call 911. We got a bill for over $5,000. It was more than I could afford. We avoid going to the doctor at all costs.

Did DACA change how it felt for you to live in the U.S.?

Having DACA made me feel so much safer. I didn’t go places without worrying about if I will return home. I felt different about myself. I always had so many boundaries in my life and couldn’t build a future. I could never consider what I wanted to be when I grew up. Having DACA made me feel like an equal. Even though I had to pay more for school, I still had the same chances for a job as anyone else. I always wanted to buy a house for my parents to live in. Two years after receiving DACA, I was able to buy a house for my family. I worked 2 jobs while in nursing school to buy the house. I would only sleep on breaks during work but my employers were very supportive of my dream. My restraints were gone and I suddenly got to break free. I was unstoppable. I would say I had new hope for my life. Not only did I have hope for myself but also for my siblings. I wanted the American dream for them as well. They had never dreamed of living in their own home or a family vacation or going to summer of camp. I had to help raise them in the summers so my parents could work. I was walking on Cloud 9 for a long time. I gave them a home and took them to Disneyland. People would ask me how I didn’t sleep for 3 years during nursing school but I was so energized by my new life. My sister would always say she wanted to be just like me. I know I have done well for them.

*We take a break to cry. Our family, children and friends are huddled around Miles's nurse to hear her story.*

How does it feel to know our President has ended the DACA program?

It’s terrifying. It’s devastating to think what you have been able to build in 5 years could be destroyed in 6 months. I’m beginning to think, what will I do with my house? My career? Do I even have a future here? What am I supposed to do? I don’t know if I should go back to a place where I was born to do… who knows what? I wouldn’t know what to do there, what to look for, how to live. Everything I know is here. I’m afraid my family will be split up.

If you could educate people on your situation, what would you tell them?

I don’t believe we are taking away anyone’s job or opportunities. We are not taking anything from Americans. Just because we are getting a chance to be like other Americans, it opens doors for us, but doesn’t close it for others. We all fight for who we want to become and who we want to be. The fact that I work as a nurse does not mean I’m taking the spot from another nurse. If they aren’t a nurse, it’s most likely because they don’t chose to do that with their life. There is room for all of us.

What’s your plan now?

I don’t know what my plan is. It would be easier to answer that in a sense of what I hope for. I don’t know what the future holds and everything is uncertain. I’m hopeful that if congress doesn’t allow us to be citizens, they let us continue to work and go to school legally. Without that, there is no plan for me even though I would like to be a citizen so I could do more with my life. But compared to having nothing, DACA is all I have. I don’t mind paying for it if it’s the only option. It’s hard to have hope. Everyone tells me to be optimistic and I really want to, it’s just hard to hope for something that won’t happen. I don’t know if I can change any of this. I wish there was something to hope for.

Would you or someone you know like to share their DACA story? Please contact me at allisonalefebvre@gmail.com

Caleb's City ICU Tour and a New Diagnosis

Our first family photo.

I have been a bit vague about things we have learned about our baby Caleb lately, mainly because there have been a lot of differing opinions. After I had Caleb, we spent 2 days in the hospital and he struggled with hypoglycemia over the next two days. His blood sugar kept plummeting down to 30 and they would tell us to just give him formula, which he hated and would gag and vomit as we bottled it to him (my milk had not come in yet). My friend had just had a baby and pumped for us. We snuck it into the hospital and would syringe it into his mouth as he gobbled it up. Ultimately, this stabilized his blood sugar. Now in hindsight, he would have benefited from some NICU time, but no one even suggested it.

Also, when he was born, there was a big bubble of spinal fluid on his back. This was not something we expected to see since he had fetal repair, but no one said anything about it. No one even suggested we get an MRI or ultrasound of his back or brain. We have since learned that Banner hospitals had no neurosurgeons on call, so Caleb’s care fell through the cracks. This led to a turbulent few weeks.

We brought Caleb home and absolutely delighted him. I couldn’t believe how perfect he was. He was jaundice and was struggling to gain weight so we were at the pediatrician every other day, but this seemed simple to me. After about 4 days home I began having a gut instinct- he was too sleepy, too lethargic and too weak. We would strip him down and take him out in the cold every 2 hours to wake him up to eat and he still wouldn’t wake up. He was like a floppy rag doll. The pediatrician didn’t seem concerned but I know too much about Spina Bifida and I had reason to be worried.

After a visit to the Cardons ER and watching my tiny baby get poked and poked and poked as they couldn’t get an IV or blood for hours, I was beside myself. Finally, he was put on a pulse oximeter and in my arms when I heard the all too familiar red alarms. The medical team came running in to bag him. Was I really seeing this? It’s the wrong kid! This only happens to Miles, not Caleb too. Bryce and I looked at each other with that look. Total defeat.

Caleb was immediately admitted to the pediatric ICU and put on oxygen. I watched him all night as his saturation levels dipped down too low. The next day, he was put under general anesthesia and intubated for a 4 hour brain and spine MRI. For those that are curious, 4 hours is a long time to be under general anesthesia, let alone a 9 day old that was born early. It’s unideal for the developing brain. We had been told the MRI would be 1 hour. I paced the halls waiting for him to return. He vomited all day as he tried to wake up.

A fill-in neurosurgeon came in to read the MRI results to us. Most of it was very familiar from Miles’s readings. Caleb has a severe Arnold Chiari malformation. He has a spinal syrinx the entire length of his spinal cord. The bubble on his back was news though. It wasn’t just spinal fluid. It’s called an “incomplete repair.” Somehow Caleb’s spinal repair had split open inutero and the spinal cord and nerves were bulging out of his back like an unrepaired Spina Bifida child. I have never once heard of this happening to a child who has already undergone fetal surgery.

We were also casually told of some other very serious diagnoses. First, he has Polymicrogyria. This is a condition I had never heard of. The folds of the brain are too small and there are too many. Some children don’t survive childhood. Some live with mental disability and lifelong seizures. The other diagnosis was Heterotopia. That is where brain matter exists in places it shouldn’t. The long term effects can be the same as the Polymicrogyria. We were told not to google it and to consult with a neuropsychologist. These are very serious things to hear on top of some already very serious birth defects.

We were sent home from the PICU with a pulse ox. That night I watched Caleb sating in the 70’s and 80’s and I felt so helpless. I had no oxygen for him and I would watch his little lips turn blue every couple minutes. The next morning I called the pulmonologist with an urgent request for oxygen. He didn’t call me back. I called the pediatrician to request caffeine therapy to boost his brain stem and breath rate.

“I’m very worried Allison. You shouldn’t be doing this all by yourself. Caleb needs a baby doctor. He should be in the NICU.” I knew our pediatrician was right.

Within a couple hours we were being admitted to the Scottsdale Shea NICU in an isolation room since Caleb had already been home. He was on oxygen but still did not seem like a thriving child. After about 3 days, my friend was at the hospital with him so I could go shower. That’s when I got the call that Caleb had tested positive for a UTI and was being emergency transported to Phoenix Children’s Hospital NICU. I rushed back to the hospital to find them attempting IV’s on him. After I watched them miss and blow 5 IV veins and 2 blood draws, they finally did a blood draw out of his artery. I have had this done and it’s incredibly painful. I have never seen a baby scream like that. I put my foot down and said no more IV attempts. So then they gave him two antibiotic shots in his thighs.

As I was in the ambulance taking him to our 4^th hospital in 2 weeks, I was trying to process why all of this was happening over a borderline UTI. No one explained when I asked so I did my own research. The barriers between urine, blood and spinal fluid are very weak in a newborn. An infection can quickly spread and turn into meningitis. They wanted him at a hospital that had neurosurgeons in case they did a spinal tap and Banner still had no neurosurgeons available. Even though our insurance doesn’t cover PCH, we had no choice.

We spent the next 8 days at the PCH NICU, which they are self-proclaimed in “the armpit” of the hospital and they aren’t kidding. The unit was gross. PCH PICU is pristine and I would have much rather been sent to that unit. Caleb was aggressively treated with 4 different IV antibiotics. The night we arrived, it took them 3 more tries to get an IV since Shea had blown so man veins. It was a horrible day. Thankfully, he responded quickly and was able to come off of oxygen (although he still has episodes of desaturations).

One we got home we immediately followed up with our neurosurgeon and he confirmed that Caleb will need another Spina Bifida back repair. He may also need a shunt in his brain soon. The Polymicrogyria and Heterotopia are present but we were told we can worry about that later. My world crumbled as I realized so much of the fetal surgery was done for nothing. Months detached from my family, tremendous pain, tens of thousands of dollars- all to spare my baby from what he will have to go through anyway.

John 10:10 says, “The thief comes to steal, kill and destroy. I come that you may have life and have it abundantly.”

The enemy has been so relentless on my family. He stole precious time with my boys. He killed our hope and he destroyed the people we once were. He won’t let up on us. We have to decide now if we get Caleb’s surgeries in Phoenix or Houston. If Houston, we have to wait several months until we can get new insurance. I don’t know if he has that kind of time. We also don’t know how we can care for Miles when his nursing hours are cut back this month. It feels as though we have to choose between our boys.

Thank God for the second half of that scripture.

Fetal Surgery Week

There were a lot of conversations the night before surgery. I was admitted the day before since the team was anxious about my Diabetes management and wanted to go over everything in detail. I met with several anesthesiologists. Some made me feel comfortable, some made me feel more anxious.

“What if my body is paralyzed but my mind stays awake and I can feel and hear everything throughout the surgery?” I asked the question mostly joking but I had some irrational fears. Expecting to be laughed at, the resident anesthesiologist responded.

“Yes that does occasionally happen where people report that they remember their entire surgery. Anyway, let’s talk about tomorrow.”

“No, I’d like to revisit what you just mentioned…”

I don’t think you can ever feel fully prepared going in to a surgery like this. One where you have been repeatedly told that the recovery is extraordinarily painful and your child may not survive, or you may not survive. One where you are only their 40^th case in the last 6 years because it’s such a rare procedure. Where you are the first insulin dependent diabetic in the world to be getting the surgery so they are going to do things differently than usual. No matter how brave I felt, I didn’t sleep the night before surgery.  

My surgery was delayed a couple hours in the morning because of another neurosurgery. Bryce and my mom were with me and the room seemed quiet and tense. Bryce came over to me and I started crying. I felt like no one was encouraging me or really acknowledging me. He got the picture and painted my nails bright pink. There was a lot of laughter seeing him attempt a manicure. During my manicure, a huge group of people came in to prep me. Bryce and mom had to leave the room so my epidural could be placed. The goal is to insert the epidural catheter before surgery. Toward the end of the surgery, they inject the medicine so when you wake up you feel no pain for the next 48 hours. The doctors kept reminding me that if I feel anything at all when I wake up then there is a problem.

As the doctor was stringing the catheter into my spine, I passed out. I’ve never done that before. Thank goodness a nurse was in front of me to catch me and lay me on the bed. I kept apologizing as I woke up and they assured me it’s pretty common because people have a drop in blood pressure during procedures. It was more of an exciting start than I had hoped for. Everyone was brought back into the room and it seemed like there were 100 people in there. I was given something to relax me and my memories got foggy as I was wheeled down to the OR. I do suddenly have vivid memories of being in the OR as they asked me to move over to an operating table. I lost count of how many people were in the room at that point but I already knew that over 25 people would be there for my surgery. The doctor put a gas mask on me and said I would be asleep soon. I felt very alert. I was looking around the room at taking everything in. It seemed like a minute passed and I grabbed the doctor’s arm. She removed my mask. “Why am I still awake?” I asked. “You will be asleep soon,” she assured me. That’s the last thing I remember.

During fetal surgery, I am placed in a very very deep level of general anesthesia. Not only do they need to put the baby to sleep but my uterus needs to be completely relaxed. My surgery was about 2.5 hours and went well. Caleb’s portion of the surgery was about 25 minutes while most of the time is spent cutting me open, removing my uterus and positioning it, cutting it open to expose Caleb (first he needed to be flipped from his back to his tummy), and eventually piecing my body back together. Caleb was measuring 1 pound 11 ounces the day of the surgery. The team updated Bryce through the ordeal and also text him pictures of the surgery throughout. My blood sugar stayed perfect the entire time.

I woke up in the recovery room in excruciating pain. I don’t remember saying much other than, “Pain, pain.” I remember people running around and the anesthesiologist team coming in to redo my epidural. I have no concept of how long that took but once it was working, I was a happy woman. We weren’t sure why my epidural didn’t work initially. I was told maybe the catheter migrated. I was given high doses of magnesium sulfate to prevent labor. All fetal surgery moms talk about this drug. It makes you feel incredibly hot, nauseous and terrible. It is very similar to having the flu. We kept the room at 55 degrees and it was intolerable to everyone but me.

Here is where the story gets interesting.

Around 1 am, I woke up in a panic. I could feel my epidural rapidly wearing off and all my feeling came back instantly. I began sobbing and Bryce woke up. I can only describe the next 3 hours as a scene out of The Exorcist. Since it was the middle of the night, the fetal team was gone and they suddenly had a fetal surgery patient with no painkillers on board and no working epidural and no orders written. Bryce, my mom and my nurse spent the next few hours trying to get the on call anesthesiologist to redo my epidural but he didn’t seem to believe it wasn’t working. The nurse kept pushing Morphine in my IV which did almost nothing. I could not wish pain like that on anyone. Every single minute felt like an hour. Bryce called a fetal surgeon on his cell phone in the middle of the night which the surgeon did not like, but he asked to speak with me. The second he heard my sobbing, he was giving the anesthesiologist a piece of his mind. I remember begging and pleading, sometimes to Jesus, sometimes to the doctor. I asked them to put me under. After two attempts at redoing the epidural, I was numb again. It was the longest 3 hours of our lives. There is nothing I couldn’t endure after that. Bryce was scheduled to fly home the next morning to be with our boys.

“Please don’t leave me,” I begged him. “I already moved my flight to Friday.”

We all fell asleep and exactly 2 hours later, I woke up to my feeling coming back again. No, this can’t be happening. I called for the nurse and more anesthesiologists came in, continually bolusing my epidural. “You should be paralyzed,” they would say. “Do you need proof?” I would cry hysterically. I’ll stand up and run around this room if you need proof!”

This time, they knew something wasn’t working right and they put me on a drip of Dilauded. I had never heard of this drug before but now I kindly refer to it as “my day on heroine.” It is essentially medical grade heroine and only used in extreme situations for pain. It wasn’t ideal for Caleb, but we had no choice and of course I would accept any relief. I barely remember the next 24 hours and I was hallucinating and could not hold a conversation.

My remaining couple days in the hospital consisted of more pain as I came off the drip, starvation, vomiting, enemas, and attempting to get up for the first time on day 4. My blood pressure ran dangerously low the whole week, around 55/30. It’s from the combination of drugs being given. Trying standing up after 4 days with blood pressure that low is…eventful. I was also not allowed to eat food or drink water for 4 days since the Dialuded was making me sick. If you wanted to see a hangry person, you should have visited room 544. The second they said I could eat, I went straight to a BLT. Also not a smart idea. Broth would have been a better choice.

My amniotic fluid levels were at a 3 (normal is above 10), but this is expected after surgery. I could feel every movement that Caleb made, tenfold. I also could tell he was in pain. He thrashed around like I had never felt before. It was heartbreaking because there was nothing I could do. Doctors seemed happy with our recovery and discharged me on day 5. They don’t want you sitting in the hospital waiting for a blood clot but it did seem early to go home. As I was being wheeled away from my room I pointed out if I were to ever be in this much pain for any other reason, I would be heading TO the hospital not AWAY!

Last pregnancy pic pre surgery

Right before surgery

Waiting to get checked in

Dr. Papanna

Diabetes Talk

Dr. Moise and Dr. Snowise

Final walk through the halls

Netflix and Chill

Next to Miles, I'm the hardest IV stick

Card reading and nail painting

Dr. Fletcher, Neurosurgeon

Dr. Tsao, our favorite

Being sent into the Operating Room

Waiting for a new epidural after surgery

We couldn't get me sats above 80- oxygen time

Painkillers make you smile

We stood up, then immediately back down

First shower, heaven

He hadn't slept in a week

Christina had the same surgery the week before

Jess flew in just to be there

Fetal Surgery- It’s Only A Day Away

Dinner with Mom at Cyclone Ayana

It’s my last day of true freedom. It’s all hitting me. I started dry heaving as I walked around Houston with my mom today. It’s funny what nerves will do to you.

Here’s the plan friends. I spent three days last week in the hospital at Memorial Hermann Children’s for my steroid shots. No one was with me so I was bored and basically just ate too much gross hospital food and had heart to hearts with the nurses and doctors. The highlight was I got to meet the mom who had fetal surgery for Spina Bifida on her daughter last Tuesday. We had been speaking online and her room was right down the hall from me. I went to see her every day and she tried to smile and grit through some serious pain for my sake. I’m seeing so much bravery in the women that go through this. It was fascinating to see someone experiencing this just one week ahead of me. Please pray for Christina and her daughter, Haven. She has been a big support to me.

My mom flew into Houston yesterday night so we got to have a girl’s day. We grabbed some Tex Mex for dinner and have relaxed in the comfort of our hotel room. I called one of the surgeons on his cell phone today with a few more questions because as we draw near to the surgery, more fears are arising. There are a few things they are doing differently with me because of my Diabetes and it always makes me nervous to have to go outside the box. For instance, they want to do quick blood draws on me to test my blood sugar during surgery so they are doing an Arterial IV line. They said these are painful and if someone accidentally puts IV drugs into an A Line, there is tissue damage and can even lead to amputation. Please don’t make that mistake medical staff! I’m putting so much trust into strangers.

Bryce flies into town tomorrow morning and I am getting admitted to the hospital around 11 am tomorrow. There are still more meetings and conferences to have with the doctors. The team has still not agreed on whether to cut my incision horizontally or vertically. There is some big debate on this. They are also deciding if they want to learn how to use my insulin pump during surgery or to move me to an IV drip of dextrose and insulin. Everyone is very nervous about my Diabetes control during the surgery and days to follow, including me.

Tuesday morning, I will be prepped and heading for surgery by 7 am. My mom or Bryce will keep you all updated on the status. The surgery is generally 3 hours but Caleb’s defect is more involved so they said it could be longer. I’m really hoping to wake up to good news. All I want to hear is, “Everything went to plan.” Words like that have become music to my ears the last couple years. The following few days after surgery will be very difficult.

I talk to moms all the time that have experienced this surgery and there is one common theme they discuss: pain. There is no denying this is one of the most painful things to go through. Unless someone has done a lot of research on fetal surgery, they have no idea the magnitude of it. Most doctors don’t fully understand. What makes it unique, is they do such an invasive procedure, cut your uterus in a very unsafe spot, and once sewn back up, your baby is in a rapid stage of growth. Most women deliver between 30-34 weeks because something emergent happens in their pregnancy. The luckiest ones make it to 37 weeks. My C-Section is scheduled for December 18.

I told the doctors that people keep comparing this to the pain of their C-Section or hysterectomy. They all look at each other and laugh and say they would compare this to going through open heart surgery, though probably more painful. Not to mention the intent of the surgery. My baby is having neurosurgery and he has to heal in my womb. They told me a C-Section will be the easiest thing I go through after fetal surgery. Ok I get it guys…this will hurt!

There are 25-30 doctors in the room to perform the surgery so in that sense I feel incredibly taken care of. With that many smart people in a room to keep Caleb and me alive, I know they will do a great job. Once surgery is over, there is a long road ahead. The goal from then on out is to stay pregnant as long as possible. Mothers say each day they get closer to their due date they feel so relieved. Most start celebrating when they make it 30 weeks! I will spend about a week in the hospital and then I’m moving into an apartment next to the medical center. I’m hoping after a few weeks there I can return to Phoenix, but it all depends on my recovery. My mom and mother in law will trade off caring for me. Bryce is going home the day after surgery to be with our boys and return to work. I wish he could stay with me longer.

Fetal surgery is so rare that it’s hard for most people to relate to. I’m so grateful to the moms I have met that have had it and the candid advice they have given me. It makes me feel less alone is this crazy experience. The love and support we received during my pregnancy with Miles ran wide. But I would say the support for Caleb has run deep. Friends, family and total strangers have invested their whole hearts into this experience. There must have been dozens of people involved in arranging care for my boys while I’m gone. This has undoubtedly been a community effort. Oh Caleb, how you have been loved before anyone could ever meet you!

If you are interested in learning about fetal surgery, there is a PBS documentary on Netflix called, “Twice Born- Stories From The Special Delivery Unit.” It has several parts and follows a few stories, so to save time I would recommend following the mother, Shelley. Her daughter is having fetal surgery for Spina Bifida.

Would I Choose This Life?

Miles pondering the meaning of life, 18 months.

When Bryce and I were engaged, he lived in Chicago and I lived in Arizona. It was long distance for 5 months as I planned the wedding and we relied on phone calls to keep in touch. He had just started his first big boy job as an auditor for PwC and the hours were absolutely brutal. He would usually call me as he was getting off work at 1 am. When he first got there, he worked in the North Suburbs and didn’t have a car. After work one night he missed all the buses and trains home. He couldn’t find a cab and was walking in deep snow in his dress shoes with no coat on in the middle of nowhere. He was overwhelmed.

On my 28^th birthday that fall, Bryce didn’t call me. I know, I know. He was in his new job and wasn’t able to, but you can’t expect girl on her birth to be rational. I was so mad. In the many years since, he has learned my very appropriate expectations for my birthday. Gowns, private jet, Filet Mignon, dripping in diamonds…am I right girls?! Anyway, his best friend, Erik, text me happy birthday and asked how we were doing. Bryce and Erik are very close and for some reason I just spilled my guts to him that things were really hard and frustrating and I was wondering if we should even get married. (I’m telling you, my birthday is REALLY important to me!) I’ll never forget what he said.

“Now is the time to see what you guys are truly made of.”

That was all he needed to say. This is when we get to see the nitty gritty of our relationship. Were we made of the good stuff or bad stuff? The forever stuff or the give up stuff? It was up to us. I know we were made for the deep down, good and bad, never ever getting rid of each other stuff.

I love putting my husband in the hot seat and asking him philosophical questions. He always humors me and honestly answers, hoping that we can quickly move on to watching reruns of The Office.

“If you could know that our 4^th child would also be disabled, would you stop having children?” I realize this is a loaded question to ask as Pam and Jim are reminiscing of their love for mixed berry yogurt.

“Not necessarily.” He seemed confident in his answer.

“If you could know our 4^th child would be healthy, would you have another one for sure?”

“Not necessarily. One at a time Allison.” Hmmmm, that answer was the same and I needed to pry more.

“If someone could tell you that two of your children would be disabled, and you would go through everything we have gone through, would you still make all the same choices?”

“Yes I definitely would.” Say whaaaaat? I mean, that’s what I wanted him to say but he was taking it a step further. He said he wouldn’t ponder it and be afraid. He would CHOOSE this life, exactly as it is. And if someone could have given him a crystal ball at 22 and told him how it would play out, he would gladly move forward into it. Did I feel the same way? I had to chew on that for a bit.

Let’s say an angel could give me a message about what the future would hold before I had children. She is telling me to move forward without fear and not change my course because this is God’s plan for me. Well, honestly I may need a little convincing because it sounds frickin scary Angel! This is how imagine it going:

ME: “Will I be able to keep my mojo? The fun side of me that is carefree? I don’t want to lose myself.”

Angel: “You are going to change a lot. Don’t limit yourself to who you thought you would be. Let yourself become the woman God intended. It’s much better than the woman you once were. And yes, you will still have mojo. Like, tons of it.”

 

Me: “What if others judge us? I don’t want a whole future full of that. I’m more sensitive than people think.”
Angel: “They will. They will also have someone to answer to for that. But honestly, that was going to happen either way. That’s people and that’s life. Don’t place your self-worth in others dumb dumb.”

 

Did Angel just call me a dumb dumb?

 

Me: “I’m worried about my oldest son. What if I can’t be the kind of mother he needs because I’m so focused on the other children?”
Angel: “Oh come on! You know that kid is a child prodigy in every way. Besides, you grew up in his shoes and you are an absolute hoot to be around.”
Me: “Wow Angel. Now I’m blushing.”

 

Me: “Well what about my husband? What if he isn’t satisfied with this life and secretly feels held back or disappointed in choosing me?”
Angel: “Who Bryce?! Ummm, he will adore his life with you and you know that’s a guy after God’s own heart. I’m not even going to tell him you said that insane statement because he would laugh and say worrying is a sin so you better buck up you just get over this nonsense!”

 

Wow. This Angel really has some sass. I like her.

 

Me: “Why do my children have to experience more suffering than others? And what if I lose them too soon? I won’t be able to handle it. Actually this all sounds like a lot Angel. Are you sure this is the plan?”
Angel: “Listen to me. Hard things bring you closer to God. Do not envy those that breeze through life Allison. They won’t get to experience some of the beautiful things you will. And you will never handle this alone. That’s why I’m here.”
Me: “Couldn’t it all be that way without this disability stuff? The pain, the heartache?”
Angel: “No it can’t. Stop overthinking it girlfriend! Your kids are the cutest ones God has made yet! You won’t be worrying about this stuff every day. Now do you want me to tell you who the next Bachelor is?”
Me: “No! Don’t spoil the entire future for me! I like surprises too. Sheesh.”

 

Well that solves it. I would choose this life too. Over and over. Because that’s what has been asked of me and also because it’s so beautifully worth it.

 

Paying Hope Forward- A Letter To Our Doc

We had a very interesting visit with our Perinatologist last week. We really like her and she is the same doctor that gave us Miles’s Spina Bifida diagnosis. This conversation was obviously different and we mostly talked about how shocking it is that it’s all happening a second time. She said our chances were less than 5% that it would happen again. She said she spoke with some Geneticists she knows and they were all very surprised about our family with 3 cases so close in a family. She recommended we look into some studies and contribute our genes into research.

“How can I have a healthy child? I’ve always wanted to have a girl.” I asked her.

“Keep having children! This won’t happen every time.” We liked her answer. “I can’t wait for you to come back to me next time when you are pregnant with your daughter.”

She commented that she had never seen a family so positive and light hearted.

After that meeting, one of her comments kept coming back to me. She said usually gets the hardest and most complicated cases. I imagine she sees a lot. We felt inclined to send her the following letter.  

"Dr. Kuhlman,

Bryce and I wanted to thank you for the way you handled our diagnoses of Miles and Caleb. I know you must give hard news often and it is very emotionally taxing for you. We felt like you are truly walking through it with us, without making it seem too good or too bad. We also appreciate that you told us to have more children. We have always wanted a lot of kids and this has made it discouraging. Many medical professionals think we are crazy for wanting more children, and maybe we are, but we love our kids all the same.

I also felt inclined to mention something that crossed our hearts after our last visit. You had said that you often get the toughest scenarios; the hardest ones to diagnose. I imagine you see parents in their darkest points, making the hardest decision of their lives. We know that feeling very well, times two. One thing we gained after learning of Miles’s disability while pregnant, was that those horrible feelings of despair, hopelessness and depression all go away. Feelings are fleeting and constantly changing and it’s difficult to make a life altering choice in the midst of sadness.

If there are parents faced with similar news as we have gotten, we would love to offer to speak with them if they would like. We do not want to influence their decisions or pass judgement, but simply be a listening ear that knows exactly how it all feels, and also share our story. We have gained a lifetime of wisdom in the last few years and the most important thing we have learned is this: Just because life doesn’t turn out the way you expected, doesn’t mean it’s not a good life. And just because the whole world may not see your child’s life as worthy of living, doesn’t mean it’s not a great life to live. We have been privileged to learn lessons that most never get to learn and we have so much more joy because of Miles’s life, as we will Caleb. We are the lucky ones.

Again, we don’t want to represent your opinions but it helped me a lot to talk with other mothers that had heard the exact news that I had. Also, my husband seems shy in our visits, but he is wise beyond his years. I know that fathers have a whole different set of worries to consider and he would be a great guy for another dad to talk to. He has still exceled in his career, still goes golfing and still loves life. It won’t be as scary as one might think.

If people aren’t interested in speaking to us, they can also watch this video we had done when Miles was placed on hospice. It speaks into how each of us were effected.

https://vimeo.com/164765749

Here is another happy video of Miles.

https://vimeo.com/163583375

Sincerely, Allison Lefebvre"

Deja Vu- Another Son, Another Diagnosis

Caleb at 14 week ultrasound

We recently found out we are having our third son, Caleb Drew. His namesake is in honor of my father, Drew Hastay. We planned for this baby, we prayed for him and we prepared for a year and a half. I did genetic testing, IV vitamin therapy, saw naturopaths, spent thousands in the best supplements, ate organic, skipped necessary x-rays, didn’t use lotion or shampoo with parabens, you get the idea. Every month we were ready to try for him, I put it off just one more month because I wanted to make sure I was doing everything perfectly. Finally, April 26, 2016, we found out we were pregnant.

Everyone said the same thing. “I know in my heart this baby is healthy.” And the truth is, I did too. I was not worried about another Spina Bifida diagnosis because it is so incredibly rare to have one child with it, let alone two. Plus we had other things to worry about. Our insurance dropped all of Miles’s access to medical care, providers and hospitals, therefore I was fighting hard to keep him safe. I was also stricken with awful morning sickness and fatigue, being hospitalized twice in my first trimester. I kept telling myself that once I knew Caleb was healthy then everything would be smooth sailing.

At 15 weeks I got the Quad blood test that looks for something called AFP. It’s a protein that spills into the blood stream that indicates a neural tube defect. This test came back positive with Miles at a level 4 (normal is below 2) and was our first indication of Miles’s birth defect. For Caleb, I sat on the couch clenching my phone, waiting for the nurse to call me back with results. Since I had not heard from her first, that must be good news.

I finally got her call. Bryce was working on the plumbing under the sink and I sat close to him. The nurse’s voice began to shake. I knew. She talked about my elevated AFP and that my baby may have a neural tube defect; that I should see a high risk doctor. “I’m so so sorry,” she kept repeating.

“What is the exact AFP number?” I kept asking. I could tell she was avoiding the answer. After repeating myself she answered timidly, “8.5.”

“Ohhhhhhhh My Gosh, that’s too high,” were the only words I could slowly muster. Bryce sat by the sink with his head down. He knew what we were talking about. I got off the phone, we hugged and I cried.

My perinatologist immediately called me. She is the same doctor that gave me Miles’s diagnosis. She was beside herself. She said our only hope is that the lab got the results wrong. Banking on a lab error doesn’t leave your hopes high.

We had to wait 4 days before getting an ultrasound, though we already knew what was happening. I researched how an AFP result can be that high and other than a neural tube defect, the only other cause would be if I had liver cancer. That’s what I was hoping for.

“Maybe I have liver cancer and the baby is ok,” I hoped out loud to my husband. That’s the first time he looked really sad. I continued, “I’ve always wanted to go to heaven.” He finally looked up and smiled at me with a look in his eye that wouldn’t even consider the thoughts I was having. He said,

“Save me a seat.”

We eventually got the ultrasound but the night before I begged God for a miracle. I knew He could take all of this away. I knew he could make this all a lab error and show me a perfectly healthy son that I could hug and squeeze and nurse and could play with Weston. I told him I won’t be mad at Him if He says no, but I know He can do this and I would never be so grateful for anything in my life. I would be a better follower of Him, a better wife, a better mom, if He could just spare my son of this. I don’t usually make deals with God, but it seemed like a pivotal moment to try.

God said no.

The ultrasound showed almost exactly the things we had seen in Miles. A severe Arnold Chiari II brain malformation, an elongated cerebellum, a lemon shaped head, an indented and open spinal defect and spaced out vertebrae. The flat open defect is very rare and part of why we believe Miles is such a severe case of SB. Caleb was exactly the same. They looked at him under ultrasound for 2 hours. Is his defect in the lumbar region of his spine? Maybe thoracic? Wow, the situation kept getting worse. They said they would fight hard for me to get inutero surgery this time. There are great risks to mother and baby during this surgery.

We were prepared for the news but it still took our breath away and sent hot needles down my body. I couldn’t help but ask the doctor if she had ever known a mother with two SB children before. No she hadn’t. The usual thoughts quickly ran through my head. What did I do wrong? What is wrong with my body? I will never be able to have more children. Did I do something to disappoint God? How will I ever watch another child go through what Miles has? How will we afford this? Are we equipped to care for two disabled kids?

I didn’t realize a broken hearted person can still have their heart broken again.

When we got to the car I cried hard for the first time. “I’m not doing a good job at making kids. I’m not a good mom.” Bryce stopped me, “That’s not true. Our children are the cutest people in the world. We are luckier than most people. I’m excited to have Caleb!”

I cried, “We will never be able to go on a family vacation. You never got to have your baseball team.”

He smiled, “We will have a wheelchair softball team!” I finally laughed.

We spent the rest of the day letting it soak in. The pain is real and the grief is thick. All of the emotions and fears are the same as when we found out about Miles, yet not as intense. I cry periodically, but not as often. My appetite is suppressed, but not gone. My heart falls out of my chest, but then returns to its home. I hope for miracles, but I’m not begging for them. We have gotten used to bad news.

And the concerns are different this time. Somehow it makes last time look simple. Miles is unstable and on hospice. He needs 24/7 critical, acute, 1 on 1 medical care. The state does not provide us 24/7 care. Who will care for Miles while Caleb is in the hospital? How does Bryce hold down a job in this circumstance? His beard has already gone grey in less than a year. What will we do about our bad insurance? Weston is older now and needs us. Who will care for him while we are gone? How will we fit the boys and equipment in our car? How will we fit in our home? I am already not in great health. Am I capable of taking care of these kids? Those questions are real and something only The Lord can provide answers for. My mind starts to explode when I think of them all at once.

For some reason, God has asked a lot of us. I often wonder why he chose us. Why he thought we were adept in living this life. I also know there is a lot more to life than my comfort and when God calls you to something, you answer. You do it with thanksgiving and praise. I’m lucky God entrusted me with His most precious spirits. I hope I can make Him proud.