Thursday, December 22, 2016

One Last Kiss



I have a tough time trying to decide what to share, and what not to share with the world about our loss. So many moments are so intimate or so painful, that writing them is hard, let alone sharing them with a very critical world. My family is very supportive with my blog, and allow me to share. They don't censor, they just leave it up to me. I share because I want the world to know about our baby, I want them to know just how loved he is.

He never leaves our minds, and will most definitely always been in our hearts. I want nothing more than to hold that baby. Scoop him up and shower his fat little face with kisses.

I dream about John often. I love it when I get to hold him in my dreams. Usually it is the same dream, where I meet him on the dock somewhere, but he is an adult, or he is a baby playing on the beach. I miss him so much it really does hurt. When you wake up and you remember again, and then you try to recall holding him. Fight to pull up a memory of his sweet smile. Anything other than that terrifying feeling of dangling over the depth of despair, fight to ward off the terrible flashbacks to the last time you saw him.

I dreamt of the day he passed a few nights ago. It was all so vivid, and like I was right back in that little PICU room watching them place that little purple butterfly on the door of the room. That purple butterfly was screaming to the world that this family was losing their youngest member.

John was placed in his Mommy's arms to be taken off of life support. My sister's and I are very close, and we truly share in each other's pain. I can't place the emotion that coursed through me at that moment. Devastation is as close a description as I can give. He was so tiny, yet so much bigger than I remembered in her arms. With every tube or wire they removed, the more I shook, shake thinking about it. You can never brace yourself for the moment when you know they're gone. And you will never get over the things you see, or smell, or hear. It all echos throughout your head.

I watched my sister cradle her baby and sob over his lifeless body. She felt his heart stop. You could feel every soul in the room crash to the floor with grief. We knew immediately when he was gone, because she went with him. I watched my mom and Virginia hold him one last time. The sounds of their crying...that defeated look on their faces...are things that I can't describe. That kind of heartbreak is only recognized and understood by those that know it, and I hope you never do.

I knew I would never have another chance to snuggle with John, and we all decided to hold him one last time. He was so much heavier than I remembered, his chunky little self. He wasn't there, but I will cling to that moment. The feeling of holding him against my heart one more time. Kissing his soft little cheek. I felt him in my arms when I dreamt of him the other night. I woke up and it was like I had just been holding him.

When I woke up my heart hurt, and I almost panicked. The anxiety ate at me for a minute. Moments like those give me a whole new understanding of those that suffer from PTSD. That is exactly how I felt that morning, like I was flashing back to that day. It is traumatizing what our family went through, and it isn't over yet. If it feels this traumatizing to me, I can't imagine how Angela feels.

I wanted so much in that moment to trade places with him. Holding his broken and limp little body, hurt in a manner he never should have been hurt. I know what saying that would entail... trading places... but when it's one of your little people laying there, trust me, you would do the same. Any one of us would have traded places with him. Would have given anything to go back and change the course of events that led to him being there that day. Keep him away from that monster.

We need our baby so much. Our family is so broken without him. We are truly lost in this world right now. And the holiday's only compounded that feeling. It is so confusing, to know we should be celebrating holidays, when we feel like there is no reason to celebrate.

We are all so exhausted. It is a job trying to be happy when the world is falling down around you.

I miss you fat man. I really do.

What I'd do to hold you one more time...




Tuesday, December 20, 2016

Sweet Baby Gabe

I'm going to share something with you today, in hopes that it will help some people understand just why my grief over losing John has been so profound. I also want to commemorate another sweet little person we lost this year. This year has been tough, and we have lost so many precious lives...

Dustin has a friend, Amber, that I have never met. I've never shook her hand, or hugged her in person, but I love Amber just as much as one of my sisters. 

The very first time I spoke with Amber was after she and her husband had suffered a terrible and heartbreaking miscarriage. I didn't know her, but after Dustin's mother told me that Amber had lost both of her twins, fairly late into her pregnancy, I was compelled to reach out to her. I was worried she would think I was a lunatic, someone she didn't even know was reaching out to her during one of her most private and difficult times. But she was sweet, and kind even though she was heartbroken. I offered whatever words of encouragement I could, and offered a hand of friendship. I learned that prior to this she had suffered a couple of other miscarriages. What I really learned that day is that the one thing she wanted most was a baby.

Dustin has always spoken so highly of Amber and her husband Wes, and after speaking with her myself, I knew he was right in doing so. She is good people. One of those women that gives so much of herself to make sure everyone else is happy. She is strong, so very strong. Beautiful, amazing, loving...she's Amber. I could never tell you enough about how amazing and strong I think she is.

After losing the twins, Amber and Wes were blessed with their Rainbow baby, Gabriel. A rainbow baby is a child born after a miscarriage, stillbirth, neonatal death or infant loss. The term has encouraged parents to share their stories of loss – and the babies that followed. Gabriel was born on January 14, 2013. He was 8 lbs 14 ounces. Every bit the perfect and healthy baby. Another little chunk. Beyond loved, and waited for! I remember crying when I saw he was born, mostly just relieved that they had a strong healthy baby. And Gabe became a big brother in 2015 to Miss Abbigail, and again I was relieved to see another healthy baby. 

Amber is a good mommy. She loves her babies, and worked damn hard to get them here. They live on the other side of the country, but you can see through photos, and messages that those children are her reason for breathing. Gabe's smile always the size of Texas in pictures.

Life has this cruel way of dangling amazing things in front of you, only to snatch them too soon. 

On July 23, 2016 Gabe was found unresponsive in the pool, and died as a result of his injuries. I will never forget opening the door, and Dustin's uncle standing there telling me that something bad had happened to Amber's son and we should call. He didn't have many details, doesn't even know Amber, but he made a trip so I knew it was bad. I told him to tell me what happened, that I did not want to make any blind calls. He told me that Gabe had drown and at first I thought he was okay, that he was just injured...

When I learned he didn't survive I just laid in the bed as Dustin held me and we cried. We cried for Gabe. He was beautiful. He was 3...a baby. We never even had a chance to hold his sweet self. We cried for Wes...a Daddy having to bury is boy. We cried for little Miss Abbigail...a little sister that has to grow up without her brother. I cried because even though I never met Gabe, never held him, I loved him, and I love his mommy. But mostly I cried for Amber. Amber wanted that boy so bad she could taste it, and she got him..only to lose him. Unfair. The statement I find rolling off of my tongue so much these days.

Gabe was so beautiful, so full of rambunctious life! He was such a great big brother and loved his baby sister. Amber told me at one point that Abby looked for Gabe following the accident, and my heart just fell apart. She is so tiny, and has no way of understanding yet. I sat and scrolled through picture after picture trying so hard to find the ones that could give you a glimpse into who Gabe was, and how much he brought into this world. If I could share them all I would. He was a sight to behold. I'm so sorry I will never get to hold him. I regret so much never having been able to.

My heart aches to hold Amber. Let her know that she stays on my heart and mind constantly. Her loss just a few short months before ours, and no less profound than ours. Two babies lost in one year. Your heart can't recover from that. It's so unreal. And we become so engrossed in our lives and our own sorrows, that we fail to stop and realize others are struggling too. 

The hardest part is that while I know Amber's heart wants to be with Gabe, she has to be strong for Abbigail. And she is so incredibly strong. And when we lost John, I knew one person in the whole world who would understand more than anyone. I reach out to Amber when I just don't know what else to do. Even though she is grieving herself, she has not once shied away from letting me throw my emotions all over.

And Amber, I know you will read this, and my heart breaks knowing that you will. It never gets easier reading about the babies. I can never explain well enough in words just how much I adore you, and your family. I know that wherever they may be, Gabe and John have found each other and they are probably giving everyone a run for their money. I would give anything to take away your pain, to give Abbigail back her big brother. I don't know why our families were the ones to have to bare this burden, but I know one thing for sure...you were meant to be a part of my life, and I'm so glad you are.



"I am a mother with a broken heart. A deep hole where my son's memories play over and over. I survive everyday with the support of all my family and friends. We all feel the pain of loosing sweet Baby Gabriel. Our 5th child. My "rainbow baby". I think that's what they call it. I wish he was here to celebrate Abbigail's birthday and everything that we do. I love to talk about him with people. It does hurt, but he was such a character and the stories about him are endless. His growling and barking, how I miss it. The I love you bunches and forever. He rests here with us at home eternally. All his grandparent and cousin know our pain and theirs too. I think about you all the time my sweet baby boy. I keep hoping to see you when I dream, but they never come. Mommy doesn't dream anymore. Someday i hope I will see you in my dreams. Till then my sweet baby, you will always be on my mind, always! I love you bunches and forever. Watch over your baby sister. She will never forget you. I promise."
                                    -Amber

My heart just can't take much more.


*Photos Courtesy of Amber Horn.






Wednesday, December 14, 2016

Painting The Emotion 3 Months Later

Do you know what literal heartbreak feels like? A pain so profound that putting it into words seems an impossible feat?

So much perfection...


I am going to do my best to describe it to you...

The moment I heard the words brain dead in reference to John's condition, my heart seized up. I had to protect myself from the pain we were going to have to endure, the tough decisions that lay ahead. It wasn't so much for myself as it was for my family. My sister needed me to be strong so I had no choice but to push my pain aside for the time being. 

I remember being so scared of how things would play out that day. 

You don't understand the fear like that of seeing a tiny little person you love hooked up to life support, so very fragile and broken. 

You don't understand the fear like that of knowing you have to walk away without him. Forever.

You don't understand the fear like that of having to watch that tiny person's mother hold him as his heart came to a stop. 

You don't understand the fear like that of listening to the cries of your sister holding her dead child. 

If you know this fear, my heart goes out to you. If you have lost a child, you know these fears as well as I do. They never go away. They only turn into anxiety.

Fear was my driving emotion September 2016. 

We went through the motions that day, but in all honesty I think we cast aside the dark raw emotions. Don't misunderstand, there were very deeply pained hearts...it felt like our souls went with him, but we didn't have time to process what was really happening. It all happened so quickly. He was there...and then he was gone. No answers, no explanations. 

Initially you're in such a state of shock after a sudden unexpected loss that you don't quite feel the heartbreak. You go to bed that first night so indescribably tired that you don’t sleep, you just lay there wide awake trying to sort your thoughts. When it has been 48 hours since you slept last, sleep doesn’t seem necessary anymore. Once you do get to sleep, it is restless, and long overdue. When you wake, that is when the heart break begins to set in.

There is a 'world on your shoulders' kind of feeling. When you open your eyes after your brain has had time to process, that is when you feel it. It's as if you're lying on your back and you can't move. There is nothing restraining you. No chains or bonds. But you can't move. Every blink feels like sandpaper dragging over your bloodshot, over cried eyes. Tears start to form again because the reality sinks in that he really is gone. Your throat gets tight, breathing becomes harder. You don't get to hold him anymore. No more kisses or grins. No more tickles and giggles. No more photos. No more future for a once bright light that was a part of the center that held your world together.

Then your heart begins racing. It is racing like it will beat right out of your chest. You feel tons of anxiety squeezing behind your racing heart. But for as fast as it's beating it is held down by a burdensome weight. There is literally nothing there. There is nothing on your chest. But it feels like there is an insurmountable weight. Heavier than logic can calculate. Your arms ache as if they are being crushed. They are desperately clinging to the last time you held that baby...trying to hold tight to something that was taken from you. You inhale a deep breath hoping to catch a whiff of his scent; the baby soap Mommy washed him in for the last time lingers deep in your nostrils ever so faint, lost before you realize it was there...your finger tips burn to touch...lips quiver to kiss...but you can't. 

That is a level of despair almost impossible to come back from, to heal from. The hardest part is that this is not just felt the day after your first nights sleep...this is a pain you feel every time you wake. And when you dream of him while you sleep...waking is even harder. You feel that heart racing, pained anxiety every time you have a fleeting thought about him.

I had a dream about the day he was born a few nights ago. I woke up right after he was born. I woke up and still had that feeling of true love. I was so proud he was here. I was thinking I would go get John for the night.

Then I thought about it again.

It has been 3 months since John passed, and I still woke up thinking I could go see him. 

That anxiety again.

The only difference now is that I am not scared anymore. I have faced the scary part of our nightmare...saying goodbye for the last time. As of December 2016... I am angry. I am angry that it was our baby. I am angry that we didn't get more time. I am angry that in a world full of amazing people, we found a bad one. I am angry that someone did not care for my nephew like she promised she would. I am angry that the wheels of justice move so incredibly slow. I am angry that my sister is so hurt, and I cannot fix it. I am angry that she herself is afraid of the anger she feels, afraid she won't come back from it.

I am so damn angry.

The emotions are processing, and they are difficult. It is hard enough to learn to live with the heart ache...but living with that and the anger...there are no words yet.





Monday, December 5, 2016

Cousins & The One Lost Too Soon

Ages 11 months to 13 years and they loved
to play together!
Dustin said something to me one night that has resonated with me since. He told me that one of the hardest parts about losing John to him, was that Evan lost what was supposed to be his life long best friend. He told me how he loved growing up with a brother to play with. John was supposed to be his buddy, his 'get into trouble and giggle' playmate. He was the only other boy in a swarm of girls. They should be elbows deep in the Christmas tree together, rearranging Grammy's Christmas village...

We are all consumed in our lives and trying to deal with our grief right now. Sometimes it is hard to think outside of your own heartache and remember that there are others around you trying to deal with this tragedy themselves. Among us, there are the far more innocent and confused...our babies. The ones that are still here, living, in a very hard and confusing time. We forget in the midst of the sadness that they have lost a cousin, a companion, and a very big part of their lives too.

One of the most difficult moments of my life was telling my four year old, pure and innocent to the horrors of this world, that her baby cousin had died. She loved John. She knew there was an accident, and that John was hurt. We explained to her that the brain is the most important organ and that John's brain had been broken, and it couldn't be fixed. The doctors did everything they could but John died. She looked at me for a minute, and I saw every bit of what I just told her process through her mind. She understood, and her cries...It is very difficult to share just how it ripped through me. How it tears me apart now. A four year old should never know that pain.

Just hanging out!
Evan, is still so young. He understands that John is gone. He recognizes his picture, talks about him as it comes to mind. We knew he understood a couple of days after the funeral. Mom had put some pictures of John around the livingroom and Evan pointed one out to us. He looked at me just as serious as could be and told me John was in the ground. I acknowledged that he was, and Evan went on about his business. I'm grateful that he is as young as he is, and sad all in one...and hope that he will remember him.

After Dustin said this, it made me think of my Dad. My dad had three daughters and a wife. Most of our animals were female...he was out numbered for years. He never said it out loud, but what man doesn't want a son? John was the boy he had waited for. He was Papa's boy. And it occurred to me just how hard this must be for him and my mom. John has been in their world every day since day one. His home is their home. And there is a very large empty place there. We feel it when we visit.

I thought about my niece Caitlyn. Caitlyn is 13 years old. She truly understands what is happening. She is at such a crucial developmental point in her adolescence and she has to try and understand such a significant loss. She helped change diapers, feed and bathe John. Loved him just as much as we did...do.

Their heartache just compounds mine. I have nightmares where I hear Angela crying, or Scarlett, or my mom. Their cries seem so real I wake thinking someone is really crying. I will forever be haunted by the sobs, mine included, we heard that day. Nothing will pierce you like that of your family losing its heart and soul, and your babies hurting when there is nothing you can do about it.