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.”