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.”

 

 

12 Things You CAN Say To A Special Needs Parent

Miles, 12 Months Old

Lists are so cool right now. If an article isn’t in list form, it isn’t worth reading. Therefore I’m creating my own list. A list with a twist. I have read many posts lately on “The 10 Things You Should Never Say to A Special Needs Parent/ Someone Grieving/ Someone With A Limp/ Someone with A Lazy Eye/ Someone Who Expected More On Their Tax Return/ Someone That Got A “C” On Their Spanish Test." You get the idea. These lists put us all in a precarious situation. We could all easily slip and say the forbidden cliché that our Facebook friend specifically told us not to! The nerve of those that are trying to care.

I have been in one of the above stated demographics for the past year or so and I need to point something out. If anybody puts effort into attempting to bring you words of love or wisdom, appreciate them. It’s extremely hard and brave to come up with the best things to say so let’s not shame each other for the effort. Every “Like”, message, text, cliché remark, hug, lunch, flower, tear means someone is feeling your pain. Let’s celebrate how hardships break down barriers and let us see through the nonsense. Your crappy Spanish test could actually make the world a better place.

1. It seems like God has given you a lot to handle and you are doing it beautifully.

There are times in the midst of hard things it feels like God has given you more than you can handle. That’s because He has. He wants you to lean on Him. If you feel yourself about to say “God won’t give you more than you can handle,” try substituting the above line instead.

2. If I am ever in your shoes, I hope that I maintain the joy that you do.

You feel the words bubbling over. You so badly want to say, “I could never do what you are doing.” And of course you mean this from a good place. The truth us, you could handle it and you would. We are all dealt difficult things and it looks different for everyone. If you admire the way someone deals with their circumstance, let them know!

3. Your child is so beautiful. I would love to be educated on their disability.

No need to run, avert your eyes or say, “Look at that poor child.” We are proud of our kids and want to show them off just as you do!  

4. You seem like you have a lot of love to give. You should have more children!

Sometimes when your child has a birth defect or disability, it’s natural to blame yourself. I have done this to myself a million times. It’s a horrible feeling. Once a woman in my home said to me, “I have never seen anyone look as tired as you. You definitely shouldn’t have more children. Your plate is full.” The truth is, I do want more children. I want them to be healthy but I also just love my babies no matter what. Which leads me to #5.

5. Everything is going to be ok. I promise.

I love saying this to people and I love it when they say it to me. Sometimes parents worry a lot. We worry about our current children and the ones we haven’t even had yet! Let’s keep it encouraging, capeesh?

6. Some days are really going to suck. But then most days are going to be filled with joy.

This is my favorite and was said to me by my friend Ashleigh a day after I got my son’s diagnosis. This sums up everything you should ever say to another human. Affirm their pain and then offer hope. No one appreciates it when you brush aside their suffering. Yet there is no need to dwindle. It’s there and real and we should experience it. And then we should choose joy.

7. There is nothing normal about your everyday life but there is a special meaning for your child’s life.

One of the first things my husband said to me when we knew our son would be born with a disability was, “All I wanted is a normal life.” When I shared this deep fear, we often heard, “What is normal anyway?” Well, seeing your child’s heart stop isn’t normal. Go back to the lesson on #6: Affirm then offer hope.

8. That sounds really challenging but I can see the love in your eyes.

I meet people all the time and it comes up in conversation that I have a critically ill son. “I’m so sorry,” is always response.  Hey, it’s a natural response. I say it to people constantly. But honestly I don’t want anyone to feel sad and sorry about my beautiful life.

9. The suffering of children is hard to make sense of.

Ain’t this one the truth! We don’t know why everything happens but we do know God is in charge. Sometimes bad things happen in this world for no good reason because it’s a fallen world. So let’s skip over, “Everything happens for a reason.”

10. I will be at your house at 10 am to bring you lunch/ pick up your kids/ water your plants/ feed your pet alien/ deworm your cat. I won’t take no for an answer.

This one is very important. At my darkest times, I have found myself turning to the same people over and over again for help. It’s because they were adamant. People lovingly say, “Let me know if you need anything,” but articulating your needs is difficult and embarrassing. I recently walked in to my house while my son was in the hospital and my girlfriends were filling my freezer with food, unannounced. They poured me wine and told me to shower. That’s a good friend.

11. *HUG*

There aren’t always words for everything. There is something powerful in the unspoken. A few days after I had my son, I went to church. My friend came to give me a bear hug and I burst into tears. Her hug made me feel safe. We stayed in that embrace for over 5 minutes and we both cried. I didn’t say anything and neither did she. We didn’t need to. There was pain and no words could help. Let’s all hug each other more.

12. You are a Super Mom.

Say this to every mom you know as much as possible! It gives people all sorts of warm fuzzies!

If you have word vomited the wrong thing to someone or your bestie worked hard to formulate the same words you have heard a hundred times, don’t fret! We are all trying and even if it comes out wrong, hypersensitivity just puts well-meaning loved ones on edge. Don’t discourage the conversation by setting strict rules. Is my son handicapped, disabled, impaired, developmentally behind? Yes all of them and none of them. There is no perfect word and these are just words we use to describe a circumstance, not the true human. Lighten up, hug it out, and keep talking.

Miles vs. Life

Everything can change in a moment.

My best friends, Kandace and Jessica, were in town visiting. We had been at the pool and came home to hang out with my sons. As we arrived, we immediately went to Miles and picked him up to take pictures with him. Miles was all smiles.

Pictures with Miles just moments before the incident.

Pictures with Miles just moments before the incident.

While taking photos, Bryce asked me to help him change the car’s oil in the garage. As I walked out, I heard Miles’s pulse oximeter alarming. Miles alarms so frequently that I didn’t think much of it. There was a nurse by his side so I assumed she knew how to handle it. That moment is frozen in time for me. I wish I had walked in sooner.

After hearing the alarm continue for awhile, I walked in the living room to see my friends standing horrified and the nursing bagging Miles. I walked up to see him blue and lifeless. His oxygen levels were at 3% and heart rate was dropping. I remember yelling for someone to call 911 and I ran to the kitchen and dialed myself. My hands were shaking but I knew I was moving quickly. The operator asked several questions. Was he breathing? Where do we live? How old is my son? Is someone performing CPR? I screamed for Bryce to come in and get an oxygen tank and his face changed as he ran in the house. He knew what was happening.

I was transferred to another operator to repeat the questions. I started crying into the phone. “She isn’t bringing him back! Pease hurry!” His sats were at zero now. The nurse kept saying the same thing, “Come on Miles! Come on baby!” She was shaking his unresponsive body. She asked my friends to flick his feet but they were paralyzed at what was unfolding.

I threw the phone to Jessica and took the ambu bag away from the nurse. I squeezed it and felt no resistance. I began chest compressions. I heard Bryce yell, “Check is trach!” That’s when I look down to see his trach dangling around his chest like a necklace. The nurse had been bagging him for about 3 minutes without an airway. She never checked. For a moment, I thought it was too late. I moved into action.

“His trach is out!” I screamed. I grabbed another trach, opened the package, pieced it together and put it in Miles’s neck. My baby’s lips were purple. His eyes were in the back of his head. Life was gone.

My husband was struggling to get the oxygen tank going. He asked for help and his voice was shaking and cracking. I began bagging Miles while I held his trach in place with my other hand. I stopped every so often to do chest compressions. Nothing. I tried again. “Please come back Miles!” I begged him. Nothing.

The visual of my tiny baby. Purple now. Beyond struggling. Given in to defeat. It is burned in my brain forever.

I thought I heard sobs behind my but I never turned from him.

I slowly saw color enter his face. First blue, then white, then pink. I heard the nurse say, “He is coming back up.” I just continued working on him. He began having a seizure or temors from lack of oxygen. His hands were shaking and he stared blankly.

EMS arrived and flooded into the room. At least a dozen of them. They started assessing Miles.

I asked the nurse to put his old trach ties on. She could not do it. I asked an EMT to hold the trach so I could put the ties on. I got them on quickly but as reality was setting in, I saw how much my hands were shaking. As soon as they were on, I saw how loose the nurse had put his trach ties on and I knew that’s why this whole scenario happened.

Miles had color now but still no life to him. His eyes stared blankly. Was he gone too long? How long had it been? I knew he had been without oxygen for almost five minutes. He must have brain damage, I thought.

Bryce came to our side and said in in the sweetest voice, “Hey Miles. Hey Buddy.” Miles turned and looked at him. His eyes had life!

I heard Weston crying. He woke up to the chaos and probably felt terrified. Jessica brought him in our bedroom to calm down.

I felt a pat on my back from the EMT. “You saved him mom.” Another EMT stood in front of me. “Yes you saved him.” She said. I finally let go of the ambu bag and got up. I saw for the first time how many people were in the room. I walked straight to Bryce and cried in his arms.

The paramedics assessed Miles but we all decided not to send him to the ER. He clearly wanted to go to sleep and he ended up sleeping a lot the next 24 hours. Two police officers asked me questions and eventually everyone was gone.

The event has replayed over and over in my head thousands of times. Of course, when I reported it to the nursing company, our nurse blamed us for the event. She said we were poking Miles’s shunt. It is clear she is making excuses because she made a mistake about the trach ties but I don’t blame her. People panic in these scenarios.

I did ask her later why she had the ties on so loose and she said she knew they were too loose but she hadn’t gotten around to tightening them. She said she had a, “fat finger, small baby neck scenario” so she had trouble getting them on.

I am in the process of fighting the state of Arizona about Miles’s nursing hours. They want to cut him from our 112 hours a week, to 54 hours a week. This is the minimum a ventilated child can be given. They want Miles to have minimal care. It’s heartbreaking but I’m not a mom that is afraid to fight the good fight. It’s my full time job right now. Lefebvres VS. The State. Bring it on.

If I Were Being Honest

Many parents of special needs children share this poem by Emily Perl. It’s really encouraging because it gives your path a new feeling and new meaning. It just makes sense and states feelings in a way most of us cannot. We all want our life to be a trip to Italy and when we land in Holland, we have to appreciate the scenery. We have to watch people taking their trips to Italy while we learn to smell the tulips and build an appreciation for Holland. I was ready for the slower pace of Holland. I was ready to give up the dream of Italy. But how on earth did we end up in Haiti? I didn’t read that anywhere in the poem.

Bryce and I have joked about our move to Haiti throughout this process. Joking is how we feel normal. But if I were to be honest with myself, Haiti is how this feels many mornings when I wake up and remember why my son isn’t home with me.

As our plane departed for Italy, it took a detour to Holland. We looked out the airplane window down at the landscape of Holland and thought to ourselves, “Ok, we are fine with this. Let’s stop here and we will love it and never try to leave. We promise.” But the plane flew over Holland and turned south. It kept flying and flying and flying. Where are we going? It’s getting hot. We are getting uncomfortable. Where are we landing? Say what?!? We are in Haiti. Oh hells no. I did NOT buy that ticket.

It’s harder to find the beauty in Haiti. Yeah sure there are beaches, but come on, the storm has taken its toll on the former white sand. The food is good, but it’s too different and gives me a stomach ache. The people are courageous and welcoming, but they have suffering in their eyes. Am I a Haitian now? There is no return flight. Forget Italy, what I would give to have ended up in Holland.

I get to find beauty in the calloused, the broken and scraps of former homes left after the storm. As callouses smooth out, they become tough and resilient. As our stomachs get used to the new tastes, they start to desire the cuisine and find ways to cook the food. As we tear through the roughage, we pick up the pieces of our old homes that meant something to us, and we build new homes. Haiti has guts. It has character. It has #1 bestseller stories. Frankly, Italy and Holland couldn’t last a day in Haiti. 

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.