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

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.                                                                                                                

Whose Side Am I On Anyway?

This has been a fascinating process of heartbreak, struggle, acceptance, peace, joy and fear. And not necessarily in that order. I truly thought I was in a good place. I was ready. Miles is coming. I have had false labor several nights now so the bags are packed and the birth plan is printed.

Yet I started to get more emotional. I felt a lot more stress. I had what I would describe as small panic attacks. I was scared and I wasn’t sure if it was because of Miles’s disability or just because I was having another baby. I went on acting normal and functioning the same as usual, but I was shorter with my husband and had less energy for my son. Something was happening and I just didn’t see it coming.

I ended up picking a fight with Bryce one night. We had been having a lot of tough conversations about a plan to become financially self-sustaining in this seemingly impossible scenario.  All the help was putting Band-Aids on something bigger and the options we began discussing upset me tremendously. Our main option was for me to go back to work full time. Even saying the words made me bawl hysterically, not because I don’t like working (I actually miss it), but because I couldn’t stand the thought of being away from my sons when they need me.

I have read so many blogs of other Spina Bifida parents in this exact same scenario. It’s one of the most expensive life-long birth defects so nothing we are experiencing is abnormal. We went from living life simply and comfortably, to feeling like we are drowning. I believed that the fear of this is what was causing my stress but it wasn’t. Finances have never consumed me and I’m not very materialistic. I don’t care about those things and I’m not afraid to go without. I am just so appreciative to God for the beautiful life and family He has given me. There was something different gripping my heart and Bryce identified it.

I had switched teams.

We clung hard to God when we received Miles’s diagnosis and there was no doubt I could not have gotten through that time on my own. But as months went on and I accepted his disability and the possibility of worst case scenarios, I forgot that I still needed God. I became comfortable and complacent and things were back to normal again. The birth of Miles was still far away enough that I didn’t have to be overly prepared but I was far enough away from the initial news that I had time to accept.

As the approach of his due date came near, the realizations became clearer. My son has a disability. He doesn’t perform well on tests and we aren’t sure what the problem is. I won’t get to hold him when he is born. This is terrifying and I don’t know what our new life will look like. I stopped standing next to God looking at fear and I began standing on fear’s side looking at God from a distance. I had switched sides without even knowing it. We prayed for God to bring us back on His side and the next morning I woke up feeling like a different person. No tears, no anxiety, no distrust.

None of this means that the fear doesn’t still exist. It’s present but I’m no longer on its team. Fear is on the other side of the battle field and I will fight it with fury because it steals joy. Nothing can take joy away from having my son. No amount of money. No diagnosis. No nasty doctor. No discouraging ultrasound. No sacrifice.

I’m back on the team of hope, joy, faith and insurmountable love. I know now that God wasn’t going to let me have Miles until I learned this lesson. 

"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." -Deuteronomy 31:6

A Little Patch of Grass

After our surprise hospital stay at 32 weeks pregnant, we have known that Miles does not look very good on Non Stress Tests (NST’s). I have asked many times if there is something else wrong with him and the answers have varied, but mostly the answer is we don’t know. Since then, I am required to get a Biophysical Profile ultrasound twice a week. This ultrasound looks for fine and large motor skills, amniotic fluid levels and he has to practice breathing for 30 seconds in a 30 minute period. At every test, he waits until the 29^th minute to start breathing. Every time I ask God to show us he is healthy and to make him breath if he is actually ok. Every time he has passed all the tests, until today.

At today’s ultrasound, Miles wouldn’t move at all. He wouldn’t breath. The tech was almost violently shaking my abdomen, but still nothing. I wish I could say this surprised me, but nothing does anymore. The doctor decided to follow with an NST which was pretty unnecessary to me since I already knew what would happen. He didn’t do anything during the NST either. Normally, all of the results would send me back to the hospital but there is an overall sense of what’s the point? I need to have these tests redone tomorrow and I have a feeling if they are the same, I will be in the hospital again.

When the medical staff talks about my son, they have a sad, solemn look on their faces and don’t look me in the eye. They use words like “Unresponsive,” “Non Reactive” and “Under Performing.” They say things like “Wake up baby!” None of these results are new or unexpected but today they just affected me differently. The tears flowed easier today and fear gripped my muscles. All my nervous habits have come to the surface. These words are describing a real person. This is a real life. This is my son’s life. I want to believe that he will be ok. Some days I truly believe it and some days I’m just convincing myself.

So many people have graciously and selflessly helped us through this time. There has been emotional and financial support that we have desperately needed. Eventually my parents couldn’t bear that fact that every dime we have and that is given to us, just goes to doctor bills and all fun things have gone out the window.

For a long time I have daydreamed of having a patch of grass in our yard for our kids. My parents paid for us to get this patch of grass but it hasn’t been installed yet. I spend a lot of time staring at our dirt yard, fantasizing about this little piece of life growing in it. I picture getting to watch my boys play in this grass, watching them grow and hosting friends in our yard. I used to imagine a life of jet setting and excitement but now I just daydream of a little piece of grass in my yard. It seems like such a luxury now. Something so simple will mean so much.

Most people won’t understand what this grass will mean to me. It has almost been a little token of hope through this all. When I picture Miles at his healthiest, he is laughing and giggling in the grass and playing with Weston. I have tried to pass the time of anxiety of serving others in whatever way I am capable as I have accepted so much service lately. But in my quiet moments, I stare at this yard and imagine what is to come. 

Just an Ordinary Girl

I had a MOPS (Moms of Preschoolers) meeting today at Scottsdale Bible Church. A fellow mommy beautifully performed one of my favorite Christmas songs by Amy Grant, “Breath of Heaven.” I remember as a young girl, playing this song over and over again every Christmas on a cassette tape. It gives a different perspective on the Christmas story of a frightened young teenage girl that has been told she is going to give birth to the Savior of the world.

Today we were reminded that Mary was just an ordinary, humble girl that loved God. She was not rich or royalty, nor did she have superpowers. She was just a person that God specifically chose to carry out His plan. Parts of her life story we not glamorous at all, but it had significant meaning to the world.

God chose me to carry one of His children. He orchestrated life in a perfect way so I get to be the mother to Miles. My story is not as grand as Mary’s, but I listen to this song differently now and can relate to Mary as a scared, ordinary girl, wondering what is ahead and if I am the right person for the job. In the song, she says:

“Do you wonder as you watch my face
If a wiser one should have had my place?
But I offer all I am
For the mercy of Your plan
Help me be strong”

Every single day, something new terrifies me about what is to come. And yet I feel at peace knowing that God doesn’t expect me to be extraordinary. He already knew all of my imperfections when He picked me for the job. None of this is about how well I do here on earth by mommy standards. It’s about preparing my sons for eternity and teaching them about Christ. It’s about living a biblical life and loving people. That’s really all I need to do. I’m guessing Mary was a great mom to Jesus, but probably not perfect because she was human. And God chose her just the same.

“Breath of Heaven” Amy Grant

I have traveled many moonless nights
Cold and weary with a babe inside
And I wonder what I've done
Holy Father, You have come
And chosen me now to carry Your Son

I am waiting in a silent prayer
I am frightened by the load I bear
In a world as cold as stone
Must I walk this path alone?
Be with me now, be with me now

Breath of Heaven, hold me together
Be forever near me, Breath of Heaven
Breath of Heaven, lighten my darkness
Pour over me Your holiness for You are holy
Breath of Heaven

Do you wonder as you watch my face
If a wiser one should have had my place?
But I offer all I am
For the mercy of Your plan
Help me be strong, help me be, help me

Breath of Heaven, hold me together
Be forever near me, Breath of Heaven
Breath of Heaven, lighten my darkness
Pour over me Your holiness for You are holy

Breath of Heaven, hold me together
Be forever near me, breath of Heaven
Breath of Heaven, lighten my darkness
Pour over me Your holiness for You are holy
Breath of Heaven, Breath of Heaven
Breath of Heaven

Keeping Hope Alive

It’s a really hard question to answer. “How are you guys doing?” We get asked every day and I love that people don’t forget that it’s on our minds constantly. Most days we are doing really well. Life has continued on and I’m not at a difficult point in pregnancy. I am 27 weeks along, so for me this means a doctor’s visit about once a week (4 hour visits). I can still chase Weston around and roll over at night and my friends are throwing a baby shower. It’s a fun stage.

But I also tell people it feels like a calm before the storm. Starting in a few weeks I will need to go to the OB 3 times a week and the office is an hour away. I still have to pick more specialists for Miles. Many bills are close to their past due point. And Miles hasn’t been born yet. Attempting to wrap my mind around the pain I will feel when he is taken away from me in his first few hours of life is incomprehensible. Knowing how serious his surgeries are and that there is chance I could never see him again. What if I don’t have any pictures of him? What if I picked the wrong hospital? I try not to spend too much time thinking of these things but they are all just around the corner.

There is a reason God can see the future and we can’t. If we could, maybe we wouldn’t walk the road we are supposed to, knowing that fear is ahead. Maybe we would never turn the corner knowing what is there. God knows our human emotion would keep us from venturing into the unknown and we would stay snuggled in a point of safety and security. But God requires more of us. The fact I even know hard things are around the corner is more than many people know in life. It’s an odd feeling.

A couple weeks ago, Bryce, Weston and I went to Washington to see my family. We had an incredible time enjoying fall- football game, apple picking, stomping on leaves and drinking hot chocolate. My mom’s friends had a little shower for Miles and I felt so excited to have him arrive.

Weston- 18 Months Old. 

Favorite word is "Apple"

26 weeks pregnant with Miles

On our drive back to the airport I received a call from my doctor’s office. I had gotten a genetic test done the week before called the MTHFR. It looks for a certain hereditary mutation in an enzyme that helps people process B vitamins and folic acid. I had tested positive for this mutation. To explain it as best I can, this means that my body cannot properly utilize the mega doses of folic acid I had been taking to prevent Spina Bifida. In fact, folic acid actually exacerbates this problem and makes me more depleted of folic acid. So what is the solution to this? I would have simply needed to take a different form for folate (the natural form of folic acid). I basically just needed a different vitamin.

I flew home alone with Weston after finding this news out. I had gotten the flu and had a high fever and it was one of the worst flights of my life. At first I thought the news of the MTHFR was helpful because it shows me what I can do differently in future pregnancies. But then the anger set in. I had done pre-conceptual counseling before ever getting pregnant to specifically discuss how to prevent Spina Bifida. I was told to take lots of folic acid. I have seen dozens of high risk specialists over the past few years and no one mentioned this simple blood test. In fact, they all told me to take lots of folic acid. This is exactly opposite of what I should have been doing. I felt failed by doctors. This is not a rare condition so why wouldn’t anyone take 3 minutes to mention it? Truthfully, my heart was shattered again. It was easier not knowing why this happened.

It got a little worse after that. I had an OB appointment and ultrasound the next day. Weston got sick and Bryce had to take a day off work to watch him while I went to the appointment. I don’t really like the perinatal OB group I am with but I don’t have the energy to transfer doctors again. On the ultrasound, Miles looked a bit worse than we originally thought. It was confirmed he has a clubbed left foot. This happens because he is already experiencing paralysis in the womb and cannot properly move his legs. The location and size of his lesion (opening in his spine) is larger and higher than we were told. It now opens over 4 vertebrae. The ventricles in his brain are already at full capacity so if they increase even 1 millimeter, he already has hydrocephalus. This happens because the brain is blocking the spinal fluid from flowing around the body correctly so it builds up in the ventricles in the brain. These children need to have shunts put in their brains to drain the fluid.

Of course the delivery of this news was terrible and insensitive and very matter of fact but I have gotten used to that. I called Bryce to tell him but on my way home I ran out of gas on the freeway. It just felt like the enemy was taking his stabs. When I did get home, Bryce looked the most depressed he has been through all of this. He said something that really broke my heart, “I have lost hope.”

When you take someone’s hope away, you have taken everything. You take the sparkle from their eye.

Many of the miracles we had asked God for were already disappointed by these results. Though none of the news was shocking or unexpected, it was enough to knock us back into reality. We were hoping Miles could be a “best case scenario” and now he is falling into the bad scenario category with certain things.

I could just see it in Bryce’s demeanor over the next couple days. He was sadder. We took a night without Weston and went to dinner at Maggiano’s together. We had a great night and talked about Miles the entire time and what we are afraid of and what we think God’s plan is in all of this. It was therapeutic to sit down for a couple hours and just talk. Bryce said it scared him that he could go from a place of happiness to deep sadness so quickly. That’s how this journey is going to be- up and down, then up then down, and up again. We also admitted that initially we had drawn very close to God and gradually we drifted away again and this is a reminder that we need to stay close. It’s in human nature. We draw close to God, walk beside God, then run from God. Only to realize we need to draw close again.

In it all, we just have to keep hope. When Miles is born and his disabilities begin to unfold, we have to hope. When the news is so bad it can’t seem to get worse, we hope. And then we praise God. We praise if the answer to miracles is yes and we praise if they are no. When it feels like there is nothing to praise, we remember what God has done for us and we dig deep into our soul, and we praise. And when we see our beautiful son, perfect in God’s eyes and in ours, we get on our knees and from the bottom of our hearts, we praise. 

"Welcome to Holland" by Emily Perl Kingsley

Many people have seen this poem, but it's an incredible portrait of the feelings that go through a parent's mind when their child has a disability. 

"Welcome to Holland" by Emily Perl Kingsley

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”