Be Careful What You Wish For – We Are Approved For Fetal Surgery!

Houston Food!

The Lindens, New Family to Us

First off, I have to say that we loved our week in Houston. We were required to spend a week at Children’s Memorial Hermann Hospital completing tests and dozens of consultations to decide if we qualify for fetal surgery. Houston was wonderful to us. My friend’s mother took us into her home and treated us like family. All of the hospital staff were instantly our best friends and I have never had such a positive medical experience. We knew right away that we would be in good hands in Houston. And the food y’all! Texans don’t mess around when it comes to flavors and quantities. We did some great eating.

After some ultrasounds and an MRI on our first day, we learned that Caleb’s Spina Bifida defect and Chiari brain malformation were worse than we had been told. Ordinarily this would be bad news, but Bryce and I were happy because we knew he would qualify for surgery. Our biggest fear is that we would not qualify.

The Director of the Fetal Center spent three hours with us the first day. His job this first week is to make sure he explains the risks, aka scare the living crap out of us. The surgery is incredibly complex. There are 25-30 doctors in the room. Just doctors! Not including other medical staff. It would give you chills to know what goes into this. Roll call, timed procedures, teams on standby ready for the worst. There are many people involved in trying to keep Caleb and me safe. I will be this center’s 38^th mother to receive this surgery, and I will be the first Diabetic in history to have fetal surgery. They are truly taking a risk themselves by accepting us and we are deeply grateful.

To give you a brief overview of the surgery, this is how it goes. I will be admitted to the hospital a week before surgery to begin steroid shots to develop Caleb’s lungs. This timing is not standard, but since steroids are not good for diabetics they want to closely monitor me and make sure my sugars stabilize before surgery. For the surgery, I will be given an epidural and sedated in a much deeper sleep than for normal surgery because they need my uterus completely relaxed and the sedation needs to cross over to Caleb. A very large incision will be made on my abdomen. This is usually done hip to hip but they are considering a vertical cut on me to prevent cutting through muscle and causing infection. My uterus will be removed and examined to pick a spot to cut open that will be ideal for Caleb’s positioning. A team will be monitoring Caleb by ultrasound throughout the surgery. Once open, they sedate Caleb further, and add fluids into the uterus to keep him warm and then the neurosurgery team performs their surgery on him. This is very time sensitive and they want him exposed as little as possible. If anything goes wrong, Caleb will be delivered and a neonatal team will be waiting to keep him alive. After surgery, my recovery will be incredibly difficult and painful.

They told us all about the horrible things that can happen to me. This included a more recent case where the mother developed a blood clot in her leg. They caught it early but she may never have use of that leg. The doctors started to think Bryce and I were far too excited and positive about this surgery. They finally asked:

“Are you prepared to possibly lose Caleb during this surgery?”

We knew it could happen. I told him, “We already have a son that we are afraid of losing every day. Now we have to face it again with another son. We think about death all the time and it makes us more willing to take risks. I’m not ready to lose Caleb but I’ll never give up on giving him a good life. Even if my body has to be cut in two, I’m ready.”

He said that it is clear that I’m a mother willing to do anything for my child and I am a bit blinded by that. He said Bryce’s main concern is my life and that is also the doctors’ main concern. If something dangerous happens during the surgery and they have to choose between my life and Caleb’s, they will chose mine. They have been faced with this choice in prior surgeries. We accept this decision and hope it doesn’t come to that. We were also asked that if they need to deliver Caleb, would we want him to be saved. He would be so premature he could face significant challenges to stay alive. We said yes, save him no matter what. I WILL be meeting my son.

We know I will be in Houston a minimum of a month and I will only be in the hospital a week. After discharged, I’m required to live right next to the hospital so I’ll be in a hotel. I will also be in a wheelchair or bedrest the remainder of my pregnancy. My hope is to return to Phoenix to deliver him, but my C section may be more complicated and we need to find a team out here that is comfortable with this. The goal is to make it to 37 weeks but few moms make it that long. We are also considering that I return to Houston for delivery. Caleb will be required to spend a minimum of a month in the NICU, if not longer. We want a NICU team that will be familiar with this unique situation.

We are now in a whirlwind of planning and preparing. The absolute hardest part of all of this is that I’m leaving my boys for so long. Bryce will be their mommy and daddy. But we have been given new hope! That is worth more than anything we could ask for. Getting this far in the process has been nothing short of a miracle.

Even though it’s all terrifying, we wished for this. So be careful what you wish for. It may just happen. I had always wanted a natural birth. I wanted candles, dim lights, no IV’s and no meds. I’ve always been a huge advocate of natural birth. I couldn’t be bringing my son into the world in a more opposite way and I just have to laugh about it. No matter how a child comes into the world, they just have to be born. Caleb will come into the world having already gone through neurosurgery. That’s pretty amazing to think about. I can’t wait for him to hear what mommy and daddy decided to do for him.

We Are Heading to Houston!

After hearing that Children’s Memorial Hermann Hospital would consider me, I began speaking with other moms that had gone through fetal surgery and hearing their stories. This surgery is truly brutal and the recovery is one of the toughest I’ve ever heard of. Deep down, I knew I would not be capable of moving forward. There were too many logistics to sort out; too many details on how to care for the kids, and I just knew it wouldn’t be possible. I’ve had many surgeries in my life including heart surgery only a few months after Bryce and I married but this one was truly getting to me.

In true Bryce form, my husband trusted God completely. He said that if it is meant to be that things will begin falling into place. “Is that how you think it works?” I asked him. “Things only fall into place if I make 8,000 phone calls and fight people like I’m in court all day long.” The truth is, we were both right. We needed a lot of God, and a bit of mamma bear going to battle for her baby.

The next day I got a message from my insurance case manager. He had done some of his own research to find out that Hermann Children’s Hospital is in our insurance network. EXCUSE ME? Our own Children’s Hospitals are not in our insurance network and only a couple states even take our insurance. Yet this state, this hospital…things began falling into place. Fear began melting away and I got some mojo back. It was time to fight for my baby. The phone calls began.

We are officially scheduled for a week long consultation from September 5-9 in Houston. We could have only gotten this far with the help of dozens and dozens of friends and family members deeply wanting to see this surgery succeed. At the end of that week, the surgical team will decide if we are officially accepted for surgery. Bryce and I will return home for a week and then I would return to Houston without him indefinitely.  I would be the first Diabetic to ever receive this surgery. Making history and eating Tex Mex Baby. Sounds like a dream!

I have spent the last week working like I’m back in the corporate world. So many more things need to work out for this to succeed the way it would need to. I did find out that although the hospital is in our insurance network, none of the doctors or surgeons are covered (thanks Cigna). There are 5 doctors involved in performing the surgery since there are 2 patients- Caleb and me. I have appealed to The State for more nursing hours to help care for Miles until I deliver Caleb. I have reapplied to our grant company to keep our nanny longer as she is the only person in our lives that is capable of watching Weston or Miles, plus we trust her completely. I have asked our insurance to consider covering some of the surgical costs. I have reached out to charities to help us pay for my relocation costs. My mom and mother in law will have to travel and tag team caring for me until my delivery. I had an amniocenteses- you know, that giant needle they stick in your uterus to test amniotic fluid. Caleb and I will need to pass every lab and MRI to even be considered. Our nurses will have to sacrifice their time and health to work overtime hours for us.

But we have faith. We have a good, good Father that is bigger than any single one of these things. He can easily make them all happen. He only wants good for our family.

If I have the surgery, I will be in Houston a minimum of a month. If I return home, I will be on strict bed rest the rest of my pregnancy and can only get up for doctors appointments with a wheelchair and caregiver. The goal is for a C Section at 37 weeks but few moms make it that long. We will need full time caregivers for me, Miles and Weston. The entire burden of life and the household will be put on my sweet husband. It is also a very real possibility that I will not get to leave Houston and I will be delivering Caleb by myself out there and staying with him until he is safe to fly home. We are also preparing that I can be gone for 6 months.

Time away from my kids. So much time. This will be the absolute hardest part. I’m missing Weston’s 1^st week of preschool while at the consultation and it’s ripping my heart out. The preschool has made an exception for Weston to be dropped an hour early because even they understand the magnitude of our family being apart. Everything will be turned upside down.

But we fight for our kids. We sacrifice our bodies, our happiness, and everything that makes sense to keep them safe. We make really hard choices with only them in mind. I am bummed to be out of commission for the good weather, the holidays, pumpkin spiced lattes and fall. Those are my favorite things. But I am getting a chance to serve my son with my mind, body and spirit. What a privilege to be given this opportunity.

Weston just said to me, “Grandma lives far far away. You will not go far away right mommy?”

Well son. I may be going far far away. And you won’t understand why I can’t hug you. But it’s because I don’t just love you now, I love you forever and I want to make the best life for all of my sons forever. One day you will understand.

The Plot Thickens- Caleb and Fetal Surgery

The twins at Church this morning.

As some of you may remember, I spoke a little about fetal surgery when I was pregnant with Miles. In this surgery, the defect on the baby’s back is operated on in the mother’s womb in hopes for a better outcome to their health in the long run. My doctors and I made calls to all the big hospitals in the country that offer this surgery and the answer was always “no” because of my Diabetes. Type 1 Diabetics are excluded from getting this surgery. We even considered flying to Brazil to get the surgery before we eventually accepted that it wasn’t in the stars for us.

Now in our second round of being pregnant with a Spina Bifida baby, we again inquired about fetal surgery. Again we were met with the same answers for the same reason and we didn’t push it too hard. To be honest, we were aware of how risky the surgery is and we didn’t think it would be plausible to uproot our lives with the care that Miles requires. Our plan was to deliver Caleb at the same hospital, using the same doctors as Miles. We didn’t need to research and we still know everyone there. Heck, we were just discharged a year ago.

But then…

I got a text from my sister in law with a photo of a business card for a neurosurgeon at Children’s Memorial Hermann Hospital in Houston. Through a crazy connection, the mother of the little boy she nannies has a working relationship with this doctor. She mentioned my case to him and he told her to have me contact him directly. I sat down immediately and wrote a lengthy email trying to concisely describe both my sons’ cases. Right away, I was on the phone with the Fetal Department Director. He spent an hour on the phone with me and in the end I couldn’t believe what I was hearing. Yes, I’m a candidate. I would be the first Type 1 Diabetic to ever receive this surgery, but they are willing. They will evaluate me.

Whoa. This just got real.

I was flooded with excitement as I researched and watched videos and began obsessively talking to moms that had gone through the surgery. Along with that excitement entered sheer terror. You see, when this surgery was a hypothetical it was extremely appealing. Now we needed to hash out the dirty details; the pros and cons. Suddenly, there were a lot of cons.

In the fetal surgery, I would relocate to Houston for an indefinite amount of time. There is a large team of surgeons that would perform an incredibly complicated and risky surgery on Caleb and me. I would spend at least the next week in the hospital on an epidural and a drug called Magnesium Sulfate. The horror stories of this drug are fairly scary, but it is to prevent your body from immediately delivering the baby. When I recover, I will be moved to hotel for a couple weeks and will need a 1 on 1 caregiver. I will also be managing a lot of pain. If all goes well, I will be able to return home. If not, I will be delivering Caleb in Houston by myself.

If I make it home, I will be on strict bed rest. As in, I can’t do ANYTHING bed rest. As in, I will need my own private caregiver bed rest. I will be at huge risk of life threatening complications- uterine rupture, placenta abruption, yadda yadda yadda. And then there is my Diabetes. These babies are all born early via C-Section. They shoot for a 34 week delivery, but most of the moms I have spoken with have delivered between 28 and 33 weeks. Then you have a tiny preemie facing a whole slew of complications. And a mother that has put her body through a lot. Some moms say it took them 2 years to physically recover.

So why would we consider something like this? Sounds like a huge drag right?

Because we would do anything for our baby and this could improve his life. Miles’s outcome has been rare. We have been told he is the .001% of Spina Bifida kids that has the worst complications. Caleb looks so similar to him on ultrasound, we want to try and give him the best future possible. Not only for him, but we also believe it will improve the quality of life for all of our children. Not in the short run. We will sacrifice a lot for this. But in the long run, we can focus on each of their individual needs best if we don’t have two kids on ventilators.

But we are really, really scared. There are so many things that would have to fall into place for this to work. First, Caleb and I would need to be accepted for the surgery when we go to the consultation in Houston. I will need to find someone to be out there with me to be my caregiver as Bryce will need to stay home to work and be with the kids. The state would need to beef up our nursing hours for Miles and we would need to find nurses to train and fill those hours. We would need the grant company to renew our grant so we can keep our nanny. Our nanny would have to sacrifice another job she has to stay with us longer. And the biggest battle, our insurance has said they will not cover this. Even ACCHS covers this surgery, but our insurance won’t. There are so many details it makes my head spin. We have to figure all of this out in the next couple weeks.

If God says yes, then we say yes.

In church this morning, a verse in a worship song really stood out to me.

“God, When you move, you move all our fears.”

This situation seems almost impossible to me. And the thought of being drawn and quartered…well it’s unappealing. But where God leads me, he erases the fear, doubt and shame of my emotion. He will only lead to the good, glorious and beautiful. Let’s hope that’s all in the big ‘ol state of Texas ya’ll!

If you would like to see how the surgery works, here is a series of short videos explaining Spina Bifida and the procedure. If you get queasy, don’t worry. This is more of an advertising video and doesn’t explain gruesome details.

http://childrens.memorialhermann.org/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.                                                                                                                

Anticipatory Grief

Miles, 16 Months Old

When doctors placed Miles on hospice in January 2016, this term began getting tossed around a lot. Anticipatory Grief. I had already named it Pre-Grief. I still think mine is cuter. I think sometimes when they make something sound more formal, they think it feels less painful. They place children on hospice that they don’t think will live another 6 months. It was a very hard choice but we knew we needed additional resources at home for him like visits from nurses and access to medications.

“You are experiencing anticipatory grief,” the social worker says to me. “Oh you mean pre-grief? I know all about that darlin.” I’m always trying to lighten the mood in these meetings. “I live in a constant state of limbo. Happy and sad. I never quite know what to feel at any moment. Some days it feels like I’m dying.” They deal with death everyday but I’ve noticed hospice workers don’t attach a lot of emotion to it or ask about your emotion. It’s matter of fact. You get the sad eyes but that’s where the emotion ends. They are of course incredible people but I haven’t met one that’s lost a child. It’s a small population.

Pre-Grief sounds like you get a nice little cushion period to prepare for something horrible. But it’s different than that. I’ve tried to identify it a lot over the last 6 months. This is all I’ve come up with:

You are never fully in a moment. You want to absorb every playful, perfect moment with your child but you are always reminded that it could be the last.

Some days it’s hard to be near your child. This is the hardest to describe to someone. When I hold Miles, I can be overcome with emotion. A piece of my soul in my hands, looking up at me and holding my cheek. And he could be taken away. The insurmountable love can be too much to bear. Love really does hurt.

You stay up all night; mind racing, searching for answers. And all day you just want to sleep and get through.

You numb your mind with TV because you can live in a world for a moment that isn’t…this world.

Your husband and you try to write a will if anything happens to you but there is no one to take your kids. No one that could possible handle this life and no one you would burden to ask.

You beg God to take you first. You know it’s selfish but you can’t outlive your child. You just can’t.

People ask how life is and you wonder if they noticed that you drifted away like a leaf in the wind awhile ago. They are just talking to a shell.

You forget conversations. You either word vomited too much or stayed closed off. People get mad and take it personally. You realize just how alone you are in all this.

Most days you thank God for your life and then silently day dream about how it would be if this had all turned out very different.

You lose friends by the flocks. It’s like hydrogen peroxide in your gaping wounds. You had no idea you could feel that much pain. But the few that remain are solid gold.

Your insurance drops coverage on your son. You rack up impossible amounts of medical debt. You put it in a pile and go back to sleep.

Your kids become very good at mimicking your crying. “Mommy is sad again,” as they sniffle softly and look at you with the deepest concern you have felt all year.

Your skin becomes so thick yet your heart is like paper mache.

You stop getting invited to barbeques, movie nights and parties. You convince yourself that they would have invited if they could have.

Your son has nights where he is barely hanging on. You are doing CPR off and on for hours. Your husband and nurse are frantically trying to save him until you are all completely exhausted. You finally sedate him with Morphine and Ativan. Your husband and you look at each other with no words, but the same thoughts are in your mind. What on earth is happening? Your nurse can barely breathe. It all happens again the next night.

You don’t fight the doctors, therapists and insurance reps anymore. You used to go in guns blazing and now you go in accepting defeat.

You know you are depressed to some level. But it’s not a situation that’s going away. You are forever changed.

You still try to serve others. Getting excited for your friends’ lives; feeling their joy and pain. You throw birthday parties and baby showers and try so hard to walk the walk. Some days you pull it off.

You read stories of other mothers that have lost children. “Why are you doing that to yourself?” friends say. Because this is your reality now.

You hang on…no, you cling tightly to the hope that this will all just get better one day and your child will be ok.

You ask your husband before bed one night, “Do you think I will ever hold Miles with no machines? Where I can squeeze him and walk with him and not worry?” He pauses for awhile. “No I don’t,” he responds with such sadness.

In your lowest of lows, you are acutely aware that this desperate, deep, heart splitting pain isn’t even a thousand of the pain you would feel if your baby died.

For a moment each day, you hold your children in your arms and they giggle and laugh and look at you like they couldn’t love another human being more. You have made their life perfectly loved. For a moment it all melts away and you forget all suffering in the world and you are present for just a moment. You are just a mom, holding her kids and God reminds you, “I’ve got you.”