Monday, May 20, 2013

In Honor of Mikaela Lynch

As I reflect over the events of the last week in particular my heart aches.  It hurts for poor sweet Mikaela Lynch, Owen Black, Drew Howell and other children who have recently wandered into danger.  It hurts for their families who will never ever be the same.  It hurts in fear of losing my own babies.  While they’re not technically babies anymore, to me they are still just as vulnerable and losing them would cripple me, to be sure. 

My youngest is on the Autism spectrum.  Long before we had a diagnosis we still knew that there was something a little different about Ben.  We never quite knew if he was listening to us.  We never knew if he could feel pain the way we do.  We never knew if he experienced fear.  He was our dare devil, to put it mildly.  But I can tell you for certain it never occurred to me that he would walk right out our door and take off on his own adventure. 

Until he did.

When he was about three years old he literally made my heart stop for the first time in my life and it’s never quite been the same since. We trusted he was just like our other children. That he had fear of the unknown and would stick close to home. I learned the hard way that he would forever be our child that we must watch like a hawk. One Sunday evening I was cooking dinner while my husband was working upstairs. Ben was in the living room completely in my line of vision and earshot, watching one of his favorite shows. Our front door was open with our screen door locked, allowing in the warm spring air.

Amidst the sounds of cooking and pans clanging, I must have completely missed the sound of the door unlocking and unlatching. After an unknown amount of time…may have been 5 minutes, maybe 15, I called up to the gentleman that dinner was ready and to have the kids come downstairs…including Ben who I assumed had joined his siblings to play.

He wasn’t upstairs. He wasn’t downstairs. He left.

My heart was in my throat as I threw open the front door instantly yelling his name as I choked back the panic. I called my neighbor to see if he had meandered next door…she was one of his favorite people. No luck but she quickly met us outside where we feverishly began to assign search areas.

The neighborhood was impossible….a ray of homes only 10 feet apart lining both sides of the street capped at both ends with retention ponds. Jesus. I went to the dark place and fast. I ran…shoeless and with my phone down the street to the pond closest to our house. My husband jumped in the car and drove around the neighborhood asking kids if they had seen any sign of him, recruiting small search parties of older children along the way. As I sprinted down the sidewalk, the homes on either side began to resemble an Alfred Hitchcock movie…the street lengthened and my legs began to feel like stone, growing heavier the closer I got to the pond. Flashes of our family on the 5 o’clock news, police canvassing the neighborhood, all flooded my head and finally brought the burning tears to my eyes. How did I lose this baby?? How could I be so careless?

As I reached the pond I saw a large rubber ball floating along the edge…and in that moment a switch was flipped. I looked down at my phone and knew it was time to call the police as I headed toward the water.

As I lifted the phone I heard a commotion. I looked back down toward my house and saw a cluster of children screaming undeterminable words, almost dancing in the middle of the street. As I focused between the scurry of neighborhood kids, I saw two chubby bare thighs and I knew. It was him. (God love him, he was in nothing but a thermal shirt, diaper and sandals. At least he put on his shoes.) I don’t know that my sadly out of shape legs could have carried me to him any faster.  I scooped him up as the kids in their excitement followed us all into our home. After thanking and hugging our helpers, the gentleman could see that I was on the verge of losing my shit and quickly sent them on their way…lest they see me “ugly” cry. Nobody wants that. I didn’t know whether to spank or squeeze him…or both. After I regained my composure I held him tight the rest of the night...and vowed from that point on we would provide an environment that would keep him safe and contained.

I generally don’t take him places where he could get lost in a crowd. Lord knows if he slipped out of my hands and ran, I would not likely be able to catch him.  Family gatherings, if not in a small enclosed area, never allowed me to sit and rest.  We were forever asking “where is Ben?” and do to this day when he’s not under my nose. 

Do I keep him under lock and key every moment?  No.

Do I avoid what could potentially be rewarding experiences for him or our family because I’m scared to death of losing him?  Yes. 

I don't necessarily regret avoiding Disney World or places like it.  I'm not sorry that we live in an area that doesn't allow for him to freely ride his bike.  I have a much shorter leash on Ben and have for four years because we now know he's a wanderer.  I am so damn thankful I got a second chance to be an overbearing, overprotective mom.  What I wouldn't do to give these parents who have lost the loves of their lives that chance too. 

Right now the parents are hurting.  And they’re questioning themselves.  And they’re taking criticism.  And GOD all they need right now is our love and our support.  It could be any damn one of us in their shoes right now.  Because we never know it can happen to us until it does.  It takes less than a minute for a child to walk out the door and out of sight.  Whether we want to believe it or not, we can’t all be on guard every damn minute.  We take bathroom breaks.  We cook meals.  We are human. 

Please…do three things after you read this:

(1)   Say a prayer, send positive juju, light a candle for these families that they find peace and support as they move through the following days, weeks, months, years.  You can leave thoughtful messages and notes of encouragement for Mikaela’s family at

(2)   Help thy neighbor.  Maybe not your actual neighbor…but your community, family, friends.  Know that after hearing of these stories those parents who are already on high alert for their own children who have a tendency to wander will be even more-so.  And they are tired.  Lend a hand.  Or two. 

(3)   Please check out and donate if you can, to the National Autism Association’s Big Red Safety Box Toolkit campaign.  They offer grants to families who cannot afford to purchase these kits on their own.

Hug your babies.  Tight.  

Wednesday, May 1, 2013

Loss and Light: The Story of My Maddex

I am so thankful to have an opportunity to share with you the story of a very dear friend of mine.  It is by no means an easy story to read.  She tells of the loss of her first-born child three years ago.  She has never put her story to ink and found it to be rather therapeutic.  I offered to share in the hopes that other moms who have been through this will know that the feelings following such a tragedy are normal, you are not alone...and most importantly, so my dear friend knows she too is not alone.  Here is her story...

THE BEGINNING. This is the story of my angel boy. It started when I met the man of my forever in November of 2007, he was a blonde haired, blue eyed baseball player from the country; his name was Brandon and he stole my heart. We moved in together about a year after meeting and he proposed to me. We didn’t have some magically perfect relationship; we struggled just like every other couple. Fought over money, who was going to let the dogs out, and whose turn it was to vacuum…the usual. After a year of being engaged we bought a house together. Now, you may think we did things a little backwards…but it was right for us. We had started planning a beach wedding in my hometown of Virginia Beach. My mom put a deposit down on a gorgeous beach house for everyone to stay at, things were falling into place. Brandon and I felt closer than we ever had; I can tell you now we weren’t our closest, not hardly. In August of 2009 I lost one my really good friends to Cancer…it was a battle Dana had been fighting for a very long time. It was hard for me to deal with, I cried for her often…I was trying to heal my broken heart from that tragedy when in December of 2009 our plans changed drastically. I was pregnant.

This was not planned…and this felt majorly backwards. We told his mom first, she was a lot more forgiving than my mother who was heart first into the beach wedding. We sat his mom down in our living room and told her I was pregnant…she cried…I cried…it was exactly how I imagined it to be. Then I had to tell my mom. I love my mom, as I have gotten older we have grown closer. She is from New York and boy, let me tell you…when she’s mad she is ALL New York. I was in the car with all of Brandon’s family for moral support when I made the call to my mom. It was so hard to make those words come out of my mouth…luckily I didn’t have to…moms know everything after all. I told her to sit down…”you are pregnant.” It stung to hear someone say it with such disappointment. She yelled, I cried…it was exactly how I imagined it, I broke her heart.

THE HIGH. Brandon’s mom planned a wedding in 2 weeks. It wasn’t a last minute court house trip. It was a BEAUTIFUL wedding at a clubhouse in Georgia where Brandon’s grandparents live. Most of Brandon’s family was able to make it, my side was pretty empty…but I was ok with that. My parents did come, and though I know it hurt my mom gravely, she put a smile on her face. After the wedding we came back home to VA and life went back to normal. We were excited, we were happy, everything was perfect. I was carrying OUR child. We made that baby out of love. I was starting to show, I had a tiny little bump where that baby was growing. We were closer than we had ever been, right?

REALITY’S SLAP IN THE FACE. If you have never been pregnant you probably only know the positives. You get pregnant, you might feel a little sick in the beginning, but you get this cute little bump…then you have a baby and you have a new love of your life. That’s how it always goes right? That’s what I thought. That’s what I EXPECTED. We had our second appointment for the little bean in my belly…I was about 12 weeks along. What should have been a routine check-up, measurements, pictures, movement, was one of the worst days of my life. The ultrasound tech did a great job of keeping a positive face…showing us our baby, little arms, little legs, a heartbeat….we were ecstatic. That was until we went to talk to the doctor. Instead of going into the room with the stirrups and the scale to chat he called us into his office…he made us sit down in the nice leather chairs…then he said “there is something wrong”. WHAT DO YOU MEAN THERE IS SOMETHING WRONG?? I saw the baby, I heard the heartbeat. NOTHING IS WRONG. We are so happy right now, we are closer than we have ever been…don’t you dare take that away from me.

THE ROLLER COASTER. Our baby had a cystic hygroma, it’s basically a cyst that runs from the top of the baby’s head to the back. I went from an extreme high to low. It could be a chromosomal disorder, we wished at that time it wasn’t…but looking back now that was the wrong wish to make. Brandon was in denial, he didn’t want to believe anything was wrong…as far as he was concerned we had a perfect little baby in my belly. That made it harder…I was fighting this low on my own. Specialist appointments were made for us, a heart sonogram for the baby, an amniocentesis…everything you shouldn’t have to do when you are pregnant in a perfect world. But this was now MY world.

They stuck a giant needle in my stomach and took out some of the fluid…I felt the needle enter the sac where the baby was…it felt like a balloon popped inside of me. I was at work when I got the call with the results. The baby’s chromosomes were fine…it was a chromosomally perfect baby boy. How could that be? That my baby with the cystic hygroma had no chromosome issues? Back to the high, I cried tears of joy…maybe the cyst was a fluke…the doctor said they could do surgery when the baby was born to remove it…he was going to be fine! Women stopped in the hallway at work to celebrate with me and cry tears of joy for me. It felt so good to be back to where I was when this started.

We had another doctor’s appointment shortly after that to do a heart sonogram, most babies with the cystic hygroma also have heart defects. When we went we had my mom and his mom with us…we have more support than we could ever show our gratitude for. There was our son’s heart on the big screen, beating for everyone to hear. He was alive…and he was WELL. His heart was perfect. No holes, beating as it should. He had a BIG, PERFECT heart. We felt blessed. Our baby was a fighter and he was strong; we were going to make it through this.

Our next appointment was at 20 weeks, they needed to measure all his bones and organs to make sure he was growing. Our appointments were at the specialist from this point on…that waiting room made me sick to my stomach, and I always felt bad for the women in there…something was wrong with their babies. They weren’t lucky like us…we had a perfectly healthy baby, this was just a precaution. I always separated myself from them…we were not the same, I refused to believe it. This ultrasound tech wasn’t as good at keeping a positive face. She called in another tech…and then the doctor. My heart started racing…what did she see that I didn’t? He has a cyst, we know that lady…calm down. “We are going to need you to stay longer, he’s not moving as much as a 20 week old fetus would.” HE’S NOT A FETUS, WOMAN, he’s my son. I stayed, by myself…Brandon had to work and this was supposed to be routine after all. He didn’t move anymore. He wasn’t swallowing the amniotic fluid. His stomach was empty. “He is paralyzed from the neck down.” Excuse me? PARALYZED? We can deal with that, he’s healthy, he has a big heart, his chromosomes are fine. He is fine. “Would you like to discuss terminating the pregnancy?” Back to the low. No ma’am…I WILL NOT terminate my son. I called my mom as I was leaving...I broke down. Mom, he’s not fine, I need you to come here please. And she did, as she always did when I needed her.

She drove 5 hours to visit for the weekend; to help around the house while I cried; to make things normal for me, because that’s how we get better. We chose a name, Maddex William Scott Grenier. Because Maddex wasn’t swallowing I had a lot more fluid in my belly than I was supposed to. I was HUGE. I couldn’t breathe and I was uncomfortable all the time. I was about 23 weeks along when I lost my plug, the first sign of labor. He couldn’t come yet, he wasn’t done growing…WHY WAS MY BODY DOING THIS TO ME?! The whole world is against my little family and now my body is against me too??? I felt like I was fighting every day, fighting for my son. Fighting to keep my sanity. April 16th was my friend Dana’s birthday. I celebrated her birthday with a broken heart...she wasn’t there for my wedding and she wouldn’t be there to meet my son. Life. Was. Not. Fair.
THE END. One day at the end of April, while I was at work I started to have sharp pains and I could not breathe. My doctor told me to go to the hospital, they would be expecting me. I went in got an IV they checked everything out. I was having contractions, but I was not dilated. They sent me home. I went to my doctor the next day and he wrote me a note to stay out of work. My body just couldn’t handle the stress. My mom took leave from work to come stay with me. I remember one day she was out planting vegetables in the garden. I went out to her and broke down. Why is this happening to me mom? What did I do to deserve it? She hugged me and we cried. We stood in my backyard surrounded by the mountains and cried.

About a week later in the middle of the night I started having contractions again. Called the hospital and they told me to come in. The doctor, who looked like Einstein, checked me and said I was 1 cm dilated. They decided to admit me. The nurse who came to put my IV in was clearly new. She stuck me 5 times in each arm before another nurse came and got the IV in. I was crying. I was in pain…it was 3 in the morning and I hadn’t slept yet. They gave me an antibiotic since I was so early, they hadn’t done the strep B test…a routine test in a normal pregnancy…not mine. The antibiotic burned so bad. More tears… still no sleep. When morning came around a doctor came in to talk to me. Not my doctor. She wants to talk about the options for delivery. I AM ONLY 25 WEEKS, WHY ARE WE DOING THIS NOW?! He has a cyst, he is not developed…his chances of survival are about 1%. “If you deliver vaginally he will probably not survive, if he does we can give you time with him until he passes or we can take him to the NICU and do everything to try and save him. The only option for a C-section is a classical C-section. If you do that he will probably survive birth, but there is no way to know if he will live. The classical C-section can also prevent you from any future pregnancy…it may not…but there is no way to know until it’s done. He is too small for a regular c-section; that is not an option.”

As I sat there in a fog trying to take it all in I realized they just told me I can either fight with all I have for my baby, risk never having another baby and probably losing him, or let nature take its course. This is the hardest decision I have ever had to make. I literally had my son’s life in my hands. I had to decide whether to fight for him or let him go. If I fight for him I risk putting him in pain, being connected to tubes and IVs and having surgeries, lots of surgeries and on medicine probably for the rest of his life. Or I hold him peacefully knowing he will die, assuming he is still alive when he is born. How can anyone make these kinds of decisions? No one should HAVE to make these kinds of decisions. I stopped having contractions so they released me.

I went home to think about what was going to happen when the actual time came. I had a doctor’s appointment scheduled two days later. Not with my doctor, he wasn’t available. I went in and the new doctor checked me. I was 3 cm dilated and 100% effaced…IT WAS TIME. He told me to go to the hospital. I went to Babies-R-US first. I needed a going home outfit for my baby, he was going home. I was determined. The store was remodeling…they had no preemie outfit. Was that sign? Was someone trying to prepare me for the inevitable? It didn’t phase me. I bought a pack of sports onesies that matched hats we had bought for him when we found out it was a boy. I called Brandon and told him to meet me at the hospital...and to pack a bag. It was time.

My mom was with me through all of this. She is the reason I made it to the hospital. She was and is my rock. Brandon showed up with a bag of goodies for me. My favorite snacks, my DS and games, my charger for my phone, and lots of magazines. He was making it normal for both of us. We were not afraid. Maddex was fine. He was going home with us. Friends stopped by to see us; Dana’s mom and sister came and brought me a blanket and stuffed animal and zebra for Maddex. It was all normal. My contractions started to get worse. So they gave me an epidural. It didn’t work. The contractions were so bad in my back the pain was radiating to my shoulders I could feel everything. I cried. I was so uncomfortable. I wanted relief. They put me on oxygen and made everyone leave the room. They wanted me to sleep. They turned off the heart monitor; they didn’t want me to know if he died before delivery.

In the early morning hours of May 6th 2010 I felt like I needed to push. The doctor came in and checked me. I was ready. Wait…no I wasn’t ready...maybe medically, but mentally I was not ready. They let more people in than usual. Both moms and Brandon were allowed. They told me to push. I cried. I yelled. I told them I wasn’t ready, HE WASN’T READY. It was not time. They told me to push again. My heart broke. I felt it shatter. I knew at that exact moment he died. I felt the life leave my body. The life I had been fighting for. The life I wanted so bad to be fine. That little life was gone.

They took him to the station with all the NICU staff standing around. SILENCE. The worse sound you want to hear in delivery room is nothing. I wanted so bad to hear his cry for life. But I didn’t. No one did. He was already gone. They brought his lifeless body to me and said they were sorry. They might have been. But I didn’t care. No one could be as sorry as I was in that moment. I didn’t fight hard enough for him. This was my fault, I did something wrong to make this happen. What if I had the c-section, he might still be alive. This was my lowest low. I held him all day. I put a diaper on him, I dressed him, I wrapped him in the blanket from Dana’s mom. He was mine. They brought us to a recovery room where, they took him from me to do some tests so I could shower and relax. Relax, really? Brandon’s mom contacted an organization called Now I Lay Me Down To Sleep. They send a photographer to the hospital to take pictures of “sleeping” babies. We had our family pictures done.

My broken family was recorded in photographs. In the afternoon they told me it was time to let him go. They brought up a little plastic coffin with a blanket in it. The hospital priest came to our room to bless my son before we laid him in his, now permanent, resting place. We all cried. He looked so peaceful when I put him in the coffin. Like a little angel taking a nap. That was the last time I saw my son. We had a small funeral; just family and close friends. I don’t even know who was there. My eyes were filled with tears the entire day. My aunt and cousin from NJ came down. They bought me something to wear to the funeral…I hadn’t even thought about that. The following months were filled with struggle. I was at my lowest point in my life. Brandon was trying to keep me alive. I felt dead. I wanted to be dead. I wanted to be where my baby was. Several attempts to take my own life always ended with Brandon fighting me. Dumping pills down the toilet. I hated him for it then, I love him for it more than ever now.

CLOSURE. I will never “get over it”. That’s not how this works. Your wounds heal, but they leave a scar. They had said while I was pregnant they thought he had multi-pterygium syndrome. When he was born they weren’t so sure. We still don’t have a diagnosis. I wish I knew what killed my baby boy, but I’m afraid I will never know. I did know the only way I would be able to close the door in this chapter was with another baby. In the year that followed I found comfort in the fact that Dana was with my son in heaven…and that we would try again for another baby. That was another struggle for me and Brandon. He didn’t want another one, he was scarred. I needed another one. I needed to hear that cry for life.

In July of 2011 I found out I was pregnant again. We were so beyond happy. That moment, that positive test, we were closer than we had ever been. We were brought together through the loss of life and creation of a new one. The door was hopefully closing on that hell our life had been. In February of 2012 at 12:03 AM the day after Valentine’s Day I heard the cry for life I had been dying to hear.

Aubrie Leone Grenier saved my life. She is my reason for living. I realize now the door to Maddex will never be closed. The chapter may be over but our story continues and he is still a part of it. I think about the what-ifs from time to time, but that doesn’t change anything. He is and always will be our angel.