Monday, November 28, 2016

Dear PICU Nurse

I read a Huffington Post blog written by Heather Hucks titled "Dear NICU Nurse" and it brought me to tears. I sat on my front porch and cried for her, as I have cried so many times for myself these past few months. It wasn't tears of sadness though, it was tears of joy. Their baby made it, he fought and they fought...and he won! Tucker was a premature baby born at 24 weeks...and this mother shares an amazing bond with some of the most amazing people. 

We share a similar bond, only we share it with PICU nurses. I have mentioned the PICU nurses a couple of times in previous blogs, but after reading this heart felt story about the NICU nurses, I knew I had to share our experiences with some of the strongest people we have ever met.

Over the course of the two days that John was in the hospital we met so many doctors, nurses, and people that I could never name any one person specifically. I don't know their names, but I would know their faces in a crowded room, and they hold a very special place in our hearts.

This is the very last picture I took of John, and the only one his Mommy allowed
to be taken the day he passed. His hands and feet were the only things we
could touch because of all of the wires and tubes.

Dear PICU Nurse,

Unfortunately I knew you existed. I knew that there were people in the medical field that had to help the very sick, and dying children. I always knew you were a special kind of person. What I never knew is that on the worst day of our lives, you would have to be there for us.

I did not know that you would be the one to spend the next 24 hours with John. That you may or may not have had time to use the restroom or eat a quick snack because he required so much treatment. That you may or may not have had time to call and speak to your loved ones, while caring for our most precious loved one. I never knew the amount of skill required to administer those treatments. The ability to maintain multiple medication lines that were running all over his little body.

I never knew that you were responsible for monitoring his central lines, arterial lines, blood and blood gasses...his blood transfusions...but mostly his intracranial pressure. That you would record and watch all of these numbers and machines that were keeping him alive, and report immediately the slightest variations to the neonatal neuro surgeon. That you would notice his body temperature dropping and put a warming blanket on him to bring it back up. That you would constantly be adjusting his O2 levels or heart rate to keep him on track.

I had no idea that I would bump into you in the hallway and fall apart in front of you after asking questions I wish I had never had to ask, like how much longer Angela would have to wait in order to do organ donation, or if she could call it at anytime. Or how you hugged me when you never had to. Or constantly reminded Angela that this was her decision to donate or not, and no matter what she wasn't wrong. I never knew that you would have to explain the process of organ donation or ending life support on an eleven month old baby. One you could clearly see was desperately loved.

I am so glad I asked, otherwise we would have never known that we could hold John again...even with all of the tubes and wires that were in his body. Or that you are so strong you lifted his chunky little self right out of that bed, and into his Mommy's arms without missing a beat or messing up any wires. Or that you had a magical bag of knitted hats to cover his broken and bruised little head when we needed to unsee it most.

The one thing I never knew, and I am so glad you were there to teach me is that when push comes to shove you are the person that unplugs all of those tubes and wires. You are the one that places a baby in his mother's arms for the last time. That you are the one that turns off the machines keeping him alive. I never knew how strong you really are. NICU nurses are special, but PICU nurses are heroes in disguise. I will never know the amount of heart and soul that it takes to be a PICU nurse, but I know a couple that are angels to us. I will never know that amount of strength it takes to stand in a room full of heart broken family and makes impressions of a hand and foot because that is what we get to take home...not our baby.

I will never know how hard it was for you to watch a new mother bathe her baby for the last time, or to see a mountain of a man grandfather kiss him one last time. To watch aunts and uncles afraid to leave him behind. Desperate for one more touch, one more kiss. For anything.

What I do know is that I see you now. I see how truly special you are in this harsh world. I know that you have an extensive medical knowledge and set of skills that you used to the best of your ability for our baby. I know that when you probably wanted to cry, you held it together for our sake. We will never be able to repay the kindness and tenderness you showed not only John, but us as well. I know that during the most difficult day of our lives you were our rock and guiding light.

I hope that most of the families that have to meet you, have a better outcome than we did. That you can give hugs of happiness and not sorrow. I know that one day, sooner than you wish, you will have to help another grieving family...and my heart is with you. My heart will always be with you.

Your Biggest Fan Ever,

A Heartbroken PICU Aunt Wizza

Wednesday, November 23, 2016

Fighting For The Holidays

We all knew that the holidays were going to be rough this year. Our family is a little broken now that a major piece is missing, and we just can't get into the holiday spirit. Dustin and I are making an effort at home because our babies aren't going to suffer our sadness. We've hung our outdoor Christmas lights, and we plan on getting a tree this weekend. We always go to Kandy Kane Christmas Treeland in Anthony, Fl. It has become another tradition for our family. 
John's face in this picture!

Kandy Kane really is a charming and sweet experience to share with your family. It is a family owned and operated business. We know the owner's personally which makes the experience all the more richer for us. The farm is actually located a football fields length across from the spot where John is buried. Anthony is a small town, but it is our home. And it really is where our hearts are now.
Photo courtesy of Kandy Kane.
When you make your way onto Kandy Kane the first thing you see is rows and rows of beautiful green Florida Sand Pines, ripe for the chopping...or sawing in this case. There are pines from three foot tall up to twelve foot...possibly bigger. And the best part...YOU GET TO SAW IT DOWN YOURSELF! The kids absolutely love walking through the rows looking for that perfect tree. If a pine tree isn't your cup of tea they also have freshly cut Fraiser Firs. I prefer the fir, but I wouldn't dare take the kids joy in helping saw down our tree!

Evan was done with the pictures at this
It probably seems like we kind of jumped over Thanksgiving, and we kind of have. Our parents are away on vacation, and we decided the whole turkey, potato, and pie thing was an overkill for us this year. We decided we are boiling crab-legs and chowing down with Angela instead! She isn't into the big dinner and lots of company thing right now, and we are totally down for that! Less people means more food for us.

I have always loved Christmas, and I still do. We are happy, even with broken hearts, but while we are as happy as we can be, it can be REALLY hard to be cheery. I plan to take pictures of John with us to the tree farm, like we did at the Pickin' Patch. And while I look forward to it, it makes me incredibly sad as well. I want very much to incorporate John into all of our family traditions, that was my plan when he was alive, and it still is now. It just isn't how it's supposed to be. It shouldn't be pictures of in which he never ages. 

If you only knew how many times I sighed within each blog. Or cried. 

There are so many moments and emotions I wish I could convey..but it will take a lifetime to sort it all out. One thing I constantly feel is anxious. Like something bad is going to happen, or maybe just something. I can't put a finger on the exact feeling, but it is there. Nagging in the back of my mind. I had this same feeling prior to Halloween, and that day was not good for us. I feel like I'm waiting for the next brick wall and we are going full steam ahead.

The whole point here is that we are trying. Trying to find peace in a world turned upside down. Trying to find solace when we constantly feel anxious. Trying to love others when someone has cruelly taken so much from us. Trying to keep it together. Just trying...and for the most part making it. 

And the holidays require us to try so much harder, and we truly are. I'm looking forward to getting our tree. Sharing that moment with the kids and John. They loved sharing their moment in front of the camera, and I hope they will do it again. I worry that one day, when they are older, maybe they won't want to anymore. We will cross that bridge if we get there, but for now they love him and miss him too. And this is the only way we get to have him with us for the photo ops.

And even though we don't have him for the photo ops, we will always have him in our hearts. Even if in our arms would be better.

Being silly with Aunt Squishy. This is one of my favorite pictures <3

Thursday, November 17, 2016

Kindness, Truly

The day John was handsome.
I did not know that it was possible for my heart to break again. It has been broken so many times these past couple of months. I share these intimate moments because writing is therapeutic to me, and because I want everyone to understand our grief. To feel like they can share their story in a world where we are all too often told to hold it in for fear of making someone uncomfortable. When Angela shares in her grief, be it social media or text, it breaks my heart all over again. We will never know the depth of her pain. No words she writes will ever truly convey her despair, and it truly hurts my heart.

"Enough with the camera lady!"
We are there for her, but it's not enough. It's not him. We will never know just how much she aches for him. And that's devastating.We can't help her, all we can do is be there when it hurts the hardest. When she physically needs us to help hold her together. But we can't give her what she truly wants. We can't give her back her heart. Not being able to fix this is the hardest part, especially for Dad since he's always been the one to put things back together when they break. Being helpless is one of the hardest emotions to cope with.

Many people have reached out to us to share in their grief. Not to compare their misery to ours, but to let us know that we aren't alone in our suffering. Whether they have lost a child, or know of someone that has lost a child, they've shared their most profound and heavy hearted times. Some have been lost recently, others years ago, but one thing stands true...they are all still here, and they made it through. So I know we will too.

I have a beautiful friend that lost a baby years ago. She has been there for me through all of this. And after all these years, when I saw her after we lost John, I saw the pain in her that I see in Angela. One that even after many years, hadn't gone away. Her heart was still broken. And it broke again for us. I will never be able to thank her or love her enough for pushing aside her pain to let me bear mine. Or to thank her for reaching out to Angela in the most precious of ways. You know who you are, and you are always in my heart.

When I tell you we will never be able to repay the kindness we have been shown through all of this I mean it.

"Hallelujah! She let me sleep!"
I have Angela on my mind all the time. I reach out to her about John. She likes talking about him. Most days anyways. If she doesn't, she will politely let you know she doesn't want to talk about it. Respect that when it happens, but please do not let it deter you from trying to talk to her about him. And as I've said so many times before, I miss that baby, and my heart is broken....but that can't compare to hers. Please keep her in your thoughts. She needs all the love.

Also, I would like to ask that you give another family some love and kind thoughts. A distant relative lost their sweet sweet baby, just here for a short couple of months. It's so unfair to only get to hold them for such a short time. It leaves so many unanswered questions. I just don't know if my heart can handle much more. I will keep them in my heart as they also have to learn to live with a broken heart, and it really is so hard to do. So prayers, thoughts, whatever or whomever you talk to...please mention them. They could use some encouragement.

But most importantly everyone could use a little kindness today. You never know what someone is silently suffering through. Truly.

Monday, November 14, 2016

I Stopped To Talk To Him

I stopped to see a little spot of dirt today,
And it was only for a minute.

I cried and said I was sorry,
For not protecting you that day.

It's a tiny little patch. Freshly dug; no stone to mark its place.
Sometimes I can't find any comfort there,
Other times, I remember your sweet face.

There is no solace to be found,
At this little patch of dirt,
For our hearts are broke,
And lay beside you in the ground.

-Aunt Wizza

I miss him so much. I really do. Every now and then Angela will send me a message, or a picture of John, and I remember again that while my heartache is great, hers is so much greater. She will celebrate her birthday tomorrow, without him. And she is feeling it. We all do. The holidays and special events...well...our hearts just aren't in it this year. We are trying, we have to for our babies, but it is hard to find happy in such a dark time.

I did stop to see John the other day. For a brief moment. I don't stay too long, it's still too hard. It's not fair that among graves that are 6 foot long...his lays there all of 3 foot. A little raw patch of dirt. It's not our baby. He is not there. But it is the only place we can go when we seek his comfort.

Angela mentioned that she hasn't been there yet. I don't blame her. She will when she is ready, and I wouldn't blame her one bit if she never is. It's like the final goodbye all over again.

It feels like I am leaving him behind again. All alone. We left him alone at Shands the day he passed. We left him alone at Hiers Funeral Home when they needed to prepare his body. We left him alone at the graveside when the crew needed to lower his casket. And now we leave him alone in a grave where we won't get to hold him again. It's kind of like the feeling we all have in our hearts...lonely.

I hold onto the good memories, as tightly as possible.

Like the picture above. This was the day that we took John to the lake, Dustin and I did. He had so much fun, and I'm so grateful we got to have that day with him. This boy was in heaven! He sat between my knees on an inverted chair in the water and just played! He splashed and slammed his face into the water every chance he got! Then we put him in the bed of the truck so he could eat (the picture). He ate so much watermelon and sand I thought he was going to bust. If you look you can see a juice and sand trail on his tummy! My absolute best friend in this whole world was there that day. She loved John so much too. This day really, truly holds a significant place in my heart.

I never sent this picture to anyone, not on purpose, but it just got lost in my millions of pictures. It is the only one I took that entire day. If I could go back, I would have taken a hundred more. It was the only trip he took to the lake. I wish his Mommy could have went, but she was being the amazing Mommy she is, and she was working so that she and John could have a better future.

Is time travel really impossible? I'd give just about anything to go back to this day, even if only for a little while.

It's still so unreal.

Monday, November 7, 2016

Counting the Stars

Yesterday marked the 2 month anniversary since John passed away.

That is eight weeks since we held him last...

           ...60 days since we saw him last...

              ...1,464 hours since we had our last kiss...

                 ...87,840 minutes since we held you close...

                    ...5,270,400 seconds of complete and utter heart break.

It feels like an eternity. It is all still so unreal.

I spent the day with Angela yesterday, just she and I. It was a really nice day considering where we have landed in life. We had a wonderful lunch together, did a ton of laundry, and just enjoyed each other's company. Angela lives with our parents, and they decided to go on a day trip, leaving her home alone yesterday. She is fine to be alone, but no one realized that it was the 2 month anniversary.

It just happened that my dryer was broke. I was too cheap to go to the laundromat, and so I went to Mom's instead to do laundry. I was meant to be there. I loved that we got to have that day. Things have been so unbelievable crazy and hard these last couple of months. It feels like we start to get somewhere in life again, and then something else comes along to take our feet out from under us. So I think yesterday was the universe telling me to slow down, spend time with my sister, and love on our baby.

We talked about him so much yesterday it hurts. But it was a good hurt. They were good and happy memories. We laughed about how his little fat self used to come boot scootin' out of his bedroom with a blankie and sucking his thumb, ready to be scooped up and loved on until nap time. Mommy always gave the best cuddles. He would bypass everyone for Mommy. If Mommy wasn't around it was Grammy.

This was one of the last pictures Angela took of John. He was telling her all about it! 
Notice those two little toofer pegs that had just popped up!

We joked about how he would get mad when he would toddle. He was just getting around good. Taking his first big brave steps. When he would tumble he would get so mad! Or how the morning after Dustin and I kept him for the first time I scooped him up to snuggle in bed with us, and when Dustin rolled over and said "Hey boy", John hollered like he had been pinched! John was used to cuddling in bed with Mommy, but there were no baritone fellows rolling over scaring that patootie out of him! He did not like that one bit!

Needless to say, my heart hurts today. Today more than any day I feel that ache Virginia described. That one where your arms physically long to hold him. Ache to pull him close. Your lips quiver thinking about planting another little kiss on his chubby face. You fingers itch to trace every roll. Every ounce of your being aches to have that baby again.

When I have days like this, I resort back to thinking about Angela. If I feel this heartbroken and does she feel?

I can barely put into words most days how hard it is for us, let alone Angela. That's why I plead with you to keep her in your thoughts, your prayers, whatever it is you do when you seek comfort for those that are hurting. She needs your encouragement and kindness now more than ever.

The hard days are not even upon us yet.

Friday, October 28, 2016

Special Hearts For Those That Break

It has been seven weeks since John passed. Seven weeks that feel more like ten years. Only seven weeks. In that short amount of time so much has happened, and so much has changed.

It has only been seven weeks since I held John last, but it feels like I never got the chance to hold him at all.

It scares me to realize just how quickly we moved on. Not in the sense that we have left our baby behind, but more like we just went on with life. Almost as if he had never been here. And it happened so quickly. I think about him constantly, I know we all do. But it is like he is this little shadow in the past. Was here, but never really here. I don't know how to put into words the feeling I have when I think about him being gone.



But there is this other feeling I can't shake. This feeling like every day we don't have him, is one day further away from his existence. I know he was real. I know he existed. I bear the pain of his loss. I held his squishy little body in my arms. Kissed his sweet face every chance I got. But there are times that it seems like he wasn't real almost. I just can't put it into words. Maybe if anyone reading this has experienced this kind of loss, they know what I am trying to say.

It's like a really bad dream, only it is real life. Our very real nightmare.

Having these feelings makes me incredibly sad. These aren't the terms in which I want to think of John, just the anxieties I carry now that he is gone. Along with about a million others. Like did he know we were there that day? He was already brain dead by the time I got to see him again, so the realist in me knows he wasn't aware of his surroundings, but the ever hopeful loving Aunt in me believes he knows we were there. That he knows we were loving on him in the flesh while we could and catching the pieces of our broken hearts that were falling with every little touch, every little kiss.

It eats at me that the very last time we got to hold and love on such an incredible little guy...he was gone. I wanted to hold him forever. I want him in my arms now. The trauma of our loss rears its ugly head more often than we care to admit.

We had to take Mom to Shands for a biopsy today. Shands was the last place we held John. Shands is where he technically passed away, but he was gone long before he made it there. Sitting here now makes my heart race and feel like the million shards it broke into are being shot across my chest. The trauma. That's what I'm talking about. The recognized symptoms that our bodies are dealing with trauma, maybe not from physical pain, but from spiritual.

The staff here are still amazing. I will never be able to put into words how fortunate we were to have these people here for our baby when he needed them most. We take peace in knowing that even though there was nothing they could have done, they absolutely did everything they could to save him. They held our hands, held us, answered any questions, and made one of the most difficult days of our lives...easier. It takes a special kind of loving heart to work PICU. Not because they lose babies, but because they have to deal with those that are suffering the greatest loss any person can ever experience. Special hearts.

Truly special hearts.

Monday, October 24, 2016

Our Lil' Pumpkin King

Every year, since Scarlett's first Halloween, we have made a trip to Dunnellon in Florida to the Pickin' Patch. This is a great place to take your family and enjoy some fall festivities. They have live pumpkins on the vine that you can cut yourself to take home and decorate. They also have a hayride, hay slides for kids, a corn maze, a sunflower field, and all kinds of good fun for the family. They have it set up beautifully for photo opportunities as well. I always make sure to take advantage of the scenery to get snaps of the kids.

It is priced so affordably that it is more than worth the trip. Anyone three and up is $3.00 and the pumpkins range from $4.00 to $30.00 plus. They have ornamental pumpkins, jack-o-lantern pumpkins, sunflowers, white pumpkins (which are BEAUTIFUL), and they also sell gourds. There are rows upon rows of pumpkins! The kids love it!

It's become a tradition for our family.

This year would have been John's first trip. He was so tiny and new last year that there was no way he could have gone, but this year...he would have been walking and us a go for our money! It was overwhelmingly heartbreaking when we decided to go this year because we wouldn't get to take him. I have dubbed him Our Lil' Pumpkin King.

Preparing for a day trip like this with my kids is a challenge (Every mom just nodded.), so yesterday as I was getting things gathered, I dug up my camera. As I was scrolling through pictures, I found images of the day John was born. Laid out in all his naked glory, red face from screaming! How I cried...cry now thinking of his fat little self. As I sat there an idea popped into my head. What if we took some pictures of John with us to the pumpkin patch, and took pictures of him doing all the things he missed. Then my dear friend anxiety stopped me in my tracts! What if his Mommy doesn't like that idea?!

I have been very raw and honest in my blogs, but I also withhold a lot out of respect for my sister's privacy. Everything I do, I run by her, so I did the same with the picture idea. She loved it, told me she wanted the prints.

So load up, and away we go!

When we arrived we grabbed a wagon. They have tons of wagons there for customers to use. My first thought was John's little chunky butt should be sitting in the wagon with Evan. It was hard. His little ghost is everywhere. So I decided to take a picture of John riding in the wagon. It just isn't the same, but it was so profound to us nonetheless.

As we made our way through the ornamental pumpkins, I snapped a couple of pictures of Scarlett and Evan sitting on these big crazy things, and decided to snap some of them holding John's picture. I can't explain that empty chest feeling that consumes your heart. That's what we got. Pictures of pictures.

As we made our way through the patch I took countless pictures. Each time we stopped it took a few minutes, and it seemed we tied up the photo op areas more than anyone...but it's like people knew. They didn't ask. They didn't rush us, and they never got impatient. I suppose if you see a family taking pictures of a picture of a baby, it's safe to assume it's because he is not with them anymore.

Scarlett and Evan were thrilled to include John in our day. They both loved him so much.

At times, I caught Mommy standing off in the near distance with that far away something is missing look. I felt so guilty. Watching my babies run and play. Getting to love and hug on them all day. While she gets pictures of pictures. Never once has she given me reason to feel this way, I just do. It's something I will have to learn how to deal with. And even though her heart probably weighed a million pounds yesterday, she loved on the kids and enjoyed a beautiful fall day with us.

Missing John just doesn't describe the pain we feel. Virginia described it as an ache in her arms, sometimes physical, and most definitely internal. That accurately sums it up. Our arms are as empty as our hearts, yet we made it through another day. We made another great and happy memory, even through the pain, and John was with us even if not in person.