Some days

A friend whose mom recently passed away had posted "some days are harder than other"  Yep...that's pretty much how it goes. There are some okay days and some days that a hair out of place can bring on tears.

I haven't really written the last week, because my thoughts have been kind of all over the place and not really centered on one theme, but I got to a point today where I needed to write after a recent conversation with a family member.

Its hard for people to understand-friends and family, especially when the loss of a child is still so new, that you don't just dust yourself off and keep going. Yes, I realize that there are things I have to do, but the task of keeping composure and being "on" for my young toddler are about all I can handle some days. So, just when you think you doing ok and someone comes along expecting more and making you feel guilty about not doing more, it can bring the whole facade crumbling down...and then back to bad day. I'm not perfect and maybe there are times when I can do more, but I am honestly doing the best I can here. I mean, I just lost my son...um...a month ago?

At my first group meeting, I think it was similarly expressed by others how some people don't understand that we don't just "move on". I realized after our discussion that I can't change how they react to my grief and that everything I am feeling and doing is normal. However, how can I get past feeling bad about it? I get overwhelmed pretty easily these days and sometimes it makes me so mad that they just can't understand that.   They are lucky that they don't have to understand it the way I do.

One other tidbit I learned at the group meeting was that most of the other parents who have lost a child( I say most, because its based on my experience in the group) also hate when people say "everything happens for a reason" I think one of the other mom's said it best when she said it "makes me want to hit you in the face"....um....yep....pretty much.  I wish I could have been more vocal about how saying this to a parent who has lost a child is not ok, but maybe I will start today.

It just sucks big time that my little boy didn't make when so many others did...why, why, why?

Some days my heart aches so much that I just don't want to do anything but feel the sadness and if no one is around...cry.

Some days I just wish that this could all be nightmare and I will wake up soon...the other days, I just feel it without physically wishing it. 

One month...

Today, my little boy would be one month old. I would love to celebrate it with a picture like I have done with  my other boys, but instead I am missing him and celebrating by looking at his pictures and holding his clothes and blanket...breathing them in.

I took Brady to the park today and it wasn't such a bad today, but the emptiness still creeps in from time and time and it is still sometimes unreal to me that I had a baby, but he isn't here. I can still see his beautiful little face in mind without any effort at all. And if the day ever comes when it becomes an effort, I only need to look up.

Today is your one month angelversary, Caden, my beautiful little boy.  And I just wanted to let you know how much mommy loves you and misses you.

Due date

So this was Caden's projected due date. Today, I should be waiting for baby, in labor, or holding a newborn. However, I am doing none of those. And even though, I have two beautiful boys who are amazing and healthy, it can't erase the fact that Caden is gone and I miss him so much.


Before Brady, Father's Day was never much a glorious event for me, it was generally filled with anger with sadness due to an absent father. A father, who choses to be absent in my life. I haven't had living grandfathers since I was quite young, so it was wasn't something I celebrated. After Brady's birth, father's day became a holiday of mixed emotions. Now, Father's Day will continue to be a day fraught with mixed emotions- sadness about the little boy who was supposed to be born this weekend, sadness and anger about the father who doesn't care, but  happiness in sharing the day with my husband and beautiful sons.  This Father's Day, daddy was on duty at the fire station, so Brady and I visited Caden at the cemetery  and then drove down to see daddy. The whole drive I thought of  Caden and glanced every so often at the picture of him that I keep tucked in the visor - I still need to keep him close.I realized that he will be with me forever. That, behind every smile, laugh, every moment of joy, there will always be a piece of my heart that aches for him.Always.

This is the picture that I keep on my visor, its one of my favorites of Caden.

stuck

The last few days I have felt stuck in this sadness funk. I can't seem to shake it right now. It started somewhat Sunday morning at breakfast with my family. It was like breakfast as always, no talk of Caden, like he never even existed. Something just seemed to snap in me, I was angry that everyone seemed to just be okay. I didn't show it, didn't let on, but I was. I know that I can't expect them all to mope around forever,  I am still sad and I want to be sad. The rest of that day, I didn't want to do anything- I watched my husband and son in the pool. But, I was stuck, stuck missing my baby and wanting to be sad for the life that I lost. I sat on the living room couch and watched the memorial video I made him a few times. I read other women's stories. I researched about Down's syndrome and heart defects. I was stuck.

Later we went to dinner because it was my uncle's last night in Florida. Midway through dinner, I just wanted to get out of there. I felt as though I might burst - unable to sit through pleasantries and a general feeling of normalcy. I didn't feel normal. I felt like screaming "my baby is dead! why are we just sitting around talking about nothing!" Of course, I didn't. I just sat there, holding in my heartache. I really hate to admit it, but I was glad when dinner was over. I could finally breathe and grieve alone for my loss. For me, its just hard to be sad in public. Oddly enough, I am open about a lot of things, but real feelings, real emotions, I hide. Even in the hospital, after my initial breakdown upon learning that my baby's heart no longer beat, I would wait until visitors and nurses were gone before crying. I could talk about it, but, for me, I just can't seem to cry in public, its just not something I  can do. So, I generally do two things: hold it in if I can or run to nearest door and get out fast.  That night I did the former and then eventually the latter, because I really hate to make people uncomfortable, even family, most of the time.

When I am home with Brady by myself, I keep busy with him because I don't want to take away from his time, but as soon as he naps or Jon comes home I am back to my grief - watching his video, researching, and reading other women's stories. I wish I could explain it, but it just feels like a need right now and if I try to push it away, I feel worse. So for now, I give in to it, from time to time.

The results

Friday, I had an appointment with the doctor who delivered Caden to go over the preliminary autopsy report. I had been researching for days and was only able to decipher that he had heart defects. Luckily, it was a quiet day and not one single pregnant or new mom walked in- I was glad about that. Dr. Johnson was nice and he had a quiet tone, which honestly, drove me a little crazy during labor. But now, it was comforting and I appreciated it. I was surprised when he said he had the final report. I wasn't expecting that, I hadn't prepared and I felt anxious for the long seconds before he read it. Then, as he read it, I was surprised again- Caden had Trisomy 21, aka Down's syndrome which caused several significant heart defects and was ultimately the cause of his death.

Immediately, my mind went back to that day of my Level 2 ultrasound when the tech suggested I have an amnio because Hydronephrosis is a soft marker for downs. I was thinking that, had I done it, we would have known. But, I was comforted when no other markers were noted and everything else was "ok".  Then the Hydronephrosis was cleared up after the second Level 2, so I thought we were in the clear. Before that day, I never knew that there could be fatal defects as a result of Trisomy 21, I only really associated it with a different way of life and as a Special Education teacher I felt that it just meant a different type of life, not something life threatening.

I wonder, though, what may have been different if we had known. If we had known about the heart defects, we would have had an EKG. We would probably have eventually have found out that they were significant and that he would most likely not survive. The last couple months would have been different, darker. If we had found out about the Down's syndrome, there would be a wondering about how life would change for us, should he survive, research. This all would have occurred about the same time my mom was diagnosed with cancer and me trying to take her to appointments, calling doctors, researching options. It would have been a difficult time for all. Part of me, is glad that I didn't know, as in that time, my mom looked to the hope of a new grandchild and I was busied during the waiting portion of appointments and treatments by knitting diaper covers and hats for my new little one- a bit of happiness in that time. Part of wishes I could have known, prepared, seen if  in fact, we could have done anything for him. Some days, one part is greater than the other, but it vacillates and I guess it probably always will. The biggest thing I wonder about is, even if we couldn't save him, would I have gotten to meet him...alive. I often ache for that experience- to see his eyes open, hear his cry...anything. I know that I can't change anything now, can't go back and I am not sure if it would have been better...but I would have loved to have the chance to meet him before he left.  Though I used to think a c-section was the worst thing that could happen during birth, I know now that it most definitely isn't and ...I would gladly have gotten one if it meant even one day with Caden...just one day. It may sound ridiculous, but I often find myself jealous of the women who get even one hour with their baby.  I would have loved on day, one hour, or even one minute.


In the end, what I felt most  after hearing the results, was a bit of relief in knowing that I had done nothing in any way to cause his death. I did, of course, ask the doc anyway, whether or not we could have saved him if I had gone to the hospital. In that soft, easy tone I had grown to find comfort in, he said that   would have required surgeries and likely, still wouldn't have survived. Though I am still heartbroken and missing my boy, there is some comfort in knowing that I couldn't have done anything differently. Because, no matter what anyone told me, I have been wracked with guilt about my decisions on that day =that Tuesday night when I felt deep down that something wasn't right. Now, I could let go of the guilt and move on to heal, to learn how to continue on with my life without my little boy. Living without the little face that I imagined sleeping next to me, cuddling with me, dressing. Living without Caden.

One friend said that he died in the most comforting place of all, my womb. It was a nice thought and I hope that it was true, because we moms can't ever stand to see or even know if our children was in pain. And now that he is gone, he will still always be my third child, always in my heart.

Goodbye

Today I laid my little man to rest. It was a a very short service at the cemetery. I said my final goodbyes, though he will always be with me in my heart. Thanks to some new friends from AMEND who also lost little boys, he was laid to rest with a few items that were given to honor their memory( a beautiful blanket and a cross blessed by the Pope) and hopefully they are all together now.  Its truly unimaginable how much it sucks and how much your heart can hurt when you lose a child. Honestly, I really never thought I would be one of "those" women. The ones you read stories and feel bad about, but they aren't you. Except that, now it is me and I have to figure out how to be without him and be okay. I had to say goodbye to him, but I will remember him and love him always.

At the grocery today, I am in line and that is, of all places, where it hits that my life is moving on without him. I am not pregnant anymore and he is not here. Bleary-eyed, I sit in the car, rest my head on the steering wheel and cry. It was then, that I reached down into the packet of pictures, picked out one of my favorite pictures and tucked it into visor. Now, I can his little face wherever I look up.

This is the video I made  to honor and remember his life:

Big night

I have posted in a few days because I have been busy getting ready for Caden's service. I went into planning mode and had to make sure that it was just right for him. I didn't get everything done that I initially planned, but I think that I honored my little man's memory and his short life inside me. I arrived about an hour ahead of time and put his movie in(which I spent all week working on to make sure it was just right, however, I still don't think its just right yet), set his pictures out and then visited my boy. He looked like a small doll that you might perch upon your shelf or bed and for a minute I think that I would  love to just take him home and have him available to me whenever I miss him. But, then I snap back and see my little one resting peacefully with the hat I knit for him( which fit perfectly, by the way, whew!). Then, suddenly, here they come, the tears that I haven't shed for a few days. I cry for the little boy I lost, the little boy I loved and missed dearly. And I know that this is my fate- sudden, somewhat uncontrollable tears at both opportune and inopportune moments. I just let it go, because my heart hurt and I needed to cry.


Then, one of the directors knocked on the door. So, I took a deep breath, wiped my tears, put on my best smile and went back into planning/auto-pilot mode. It was time for the guests arrive and so I held onto my grief for later. I was so thankful for all the family and friends who were there. But, I also have to apologize if I was distracted or we didn't get to speak too much- I don't do grief well in public and well, I just kinda suck at stuff like this. So please know that I loved that you were there even we didn't really get a chance to speak.


Several times, I would catch myself just watching the video I had made, watching the ultrasounds of his little heart beating, beating so wonderfully, while I was blissfully unaware of what was to come.


So, since I have posted in the past few days, I need to let you know about the preliminary autopsy report. I found out by accident that this even existed and for days, I could think of nothing else. For some of you who don't know me all that well, I am not a person who likes surprises or waiting. My mission for the prior three days was to get my hands on that report, hoping to find a small piece of comfort. And hoping with all my might that I might say in some way " You didn't cause your son to die, It was not your fault, "or maybe "No, there was anything you could have done differently."  Of course, being a medical document and all, those weren't quite the  words I found. Here are the words:1. perimembranous ventricular septal defect, closed(healed) by the septal leaflet of the tricuspid valve, with ballooning of the leaflet into the left ventricular outflow tract(subaortic stenosis) 2. distal origin of the right subclavian artery. 3. mild pyloric stenosis


Okay, so we know that these have to do with the heart and they appear to be defects, however I really wish that they had a section below that says: "What that means is......" In my obsessive mission to obtain that paper, I completely forgot to ask about getting a doctor to go over it with me. After 24 hours of googling without a really clear picture, I decided to turn to Facebook. Though I didn't quite get an answer, thanks to the advice from some great ladies from AMEND, I now have an appointment with the doctor who delivered Caden. I will, of course, update when I find out more.


Okay not sure why these words are smaller than the rest and not really in the mood to fix it tonight. 


Good night, my sweet sweet boy, you're mommy loves you. Like your brother always says " I love you all the way to the desert and the cactus, the stars and the sky, the sun, and the MOON" 

Stolen

Somedays it just hurts more than others. Sometimes, its like it really didn't happen and its just this crazy, horrible dream. And somedays the memories of him kicking, turning and twisting in my belly are painful reminders of the life I never got to hold. Yes, I held Caden, but not the moving and breathing little boy that lived in me- the silent, still, lifeless infant that was stolen from me. Stolen- that's exactly what seems to describe it best. My hopes and dreams for Caden were stolen.I would never get to see him grow, who he would look more like as he grew. I would never get to know what his personality was like. I would never get to see his first smile, his first tooth, his first steps- all moments stolen, gone forever for Caden. When I see my other two boys it is a reminder of things I will never get to see in Caden. NEVER.  And that part make my heart ache.

Still not quite ready to face the world, Facebook is my portal, but every newborn post and picture is a painful reminder of what I won't have with Caden .I admit that there is some jealousy there, ok there is a lot of jealousy there. Today I saw a picture of a a friend's beautiful little newborn sleeping on his dad's chest. Jealousy once again creeps in because that moment was stolen from my husband and from me. The feeling of nursing him...stolen.  I cherished the boy that grew inside me, but it wasn't always easy...morning sickness, panicked moments, trips to a far away hospital for special sonograms, added weight, plantar fascitis, discomfort...all worth it...when you get that prize...your beautiful baby. But my prize was stolen and I can never have it back.  Every time that realization hits, its like I am whisked back to that moment, the moment that we couldn't find his heartbeat.  When my chest became tight,  the room began to fade, the world seemed to stop and I felt as though I couldn't breathe. I wonder how and when it will ever stop hurting so much, when that realization hits, sometimes without warning,  about what was stolen from me and would never be returned.

Here at 27 weeks, his little heart beat strong

Today, I was working on the movie about my sweet boy. I started watching the DVD of his ultrasound done in March to include in the movie. I saw his little heart beating away and I cried, cried so hard that it hurt. We were so close, right there his little heart was beating.  Tuesday afternoon on May 15th his heart was beating. I wish I could have held him and felt his little heart beating. I even admit that I am jealous of the women whose babies lived even for a few minutes, hours or days, because at least they have the memories of holding their baby alive and feeling that heart beat.That moment was stolen from me. It is just so unfair, why my boy? Why? There are drug addicts, alcoholics,  and women that care little about anything but themselves who have babies born alive. Some babies are born weighing a pound or two and survive. But my little boy who was almost five pounds with no obvious health problems who came from an imperfect, but loving mother who took care of herself and the little baby inside, did not. I feel robbed. My little boy was stolen and I will never every get him back.


Loving you and missing Caden, today and always.