#CaptureYourGrief - Day 15: Community

My first collage!  I am really enjoying this "BeFunky" app on my phone.  It's just a little difficult to get pictures from my Google photo library (say if I added a border, or played with the HDR) to my gallery, to BeFunky, back to my gallery and then back to my Google photos.  If I don't play with the photo (like above), I can easily get it done though.

The topic for day 15 of Carly Marie's #CaptureYourGrief project is Community.  On October 15th, a "Wave of Light" traveled the globe.  This was to symbolize remembering our babies who have passed, and help create awareness.  As we all well know, October is Breast Cancer awareness month.  Rightfully so, we need to continue raising awareness, and finding a cure and better treatment for this horrible cancer that so many have succumbed to.  I have several friends who have lost their mothers to this horrible monster.  Less known, October is also Miscarriage and Infant Loss awareness month, with October 15th, being the Miscarriage and Infant Loss awareness day.  And so, as a community, we lit our candles, remembered our babies, however big or small, and honored them by trying to spread more awareness.

I've lost both.  I've had at least one miscarriage, and I lost an infant to SIDS.  And while there are campaigns like "Back is Best" that have reduced the risk of SIDS, there is still no way to prevent it.  We do not understand what it is that makes babies stop breathing while they are sleeping, with no hope to be woken up.  There are a lot of theories, and honestly, they are all frustrating, because everyone wants something to blame... and so we fall into this trap - it was the vaccination, lack of vaccination, the mattress wasn't firm enough, the mattress had "chemicals" in it...  I wish, that there was a way to irrefutably eliminate some of these theories, instead of making the head of SIDS parents spin.  How are we supposed to rest easy when we have other newborn babies, infants?  Yes there are risk factors that increase the odds of an occurrence for SIDS - such as premature birth, c-section birth.  That was one of the risk factors for Preston.  Yet, there are so many babies that are born prematurely, some earlier than Preston at 35 weeks.  The rate of survival at 35 weeks is very high.  But this risk factor and some unknown environmental stressor and his critical development age could be to blame.  I think so much more research could be done, but then again, I don't know how difficult this research is.

Anyway, I went on a tangent there... Community.  The baby loss community has been one that has helped me immensely on this journey of grief.  This is a journey that I will continue for my entire life, and really without the knowledge that there are others out there who have survived such an ordeal, has been helpful.  Seeing the positivity that others are able to live by, how they go through most days honoring their children, helping others has really been eye opening to me.  The community is on forums, is via blogs, is others I have met through group therapy.  It's been encouraging to see so many couples stick together.  This can be one of the greatest challenges for a marriage, or so I've been told, over and over again.  And I know Brett and I have a really special bond, and nothing can break it, but you still have to work at it, cherish it, and make it the best it can be.  And it's been uplifting to see other couples stick together, through thick and thin.  Everyone grieves differently, it's about finding a way to support each other, even when it doesn't mesh with how you are healing.  Respecting how the other is healing.

The community has taught me a lot, and it's helped me bring awareness to others, who aren't a part of this community.  I don't ever want anyone to need to join this community, but I think helping others, who haven't experienced this type of loss, understand what we are going through, may one day help others.  Awareness is half the battle.

I'd like to see our community be supported.  I know the topic of infant loss and miscarriage is a sensitive one.  I know that it scares a lot of people, it brings out emotions that are difficult to deal with.  And I think on both ends, we need to bridge the gap.  Those of us who have experienced a loss, when we are ready, I think we need not be ashamed to speak of our children.  And for those who haven't, we need to understand that any loss is a loss.  There is no "you can always have another".  There is no "you never even got to hold him/her".  There is no "he didn't take a breath".  A loss is a loss.  It is traumatic, and it is heartbreaking.  Nothing can replace what was lost.  Trying to make "light" of it, usually ends up hurting feelings more than not saying anything.  A simple "I'm sorry for your loss" or "I'm thinking of you" or a hug, can go a long, long way.

On October 1st, I lit a candle for my son.  It is pictured above, on the top left corner.  My aunt Jocelyn and friend Cynthia did as well.  I also lit this candle, for all the babies in my loss community.  I thought of them.  I prayed for their parents.  On October 15th, I lit two candles.  A red one for Preston, pictured above, top left and bottom, and an orange one, on the bottom, again for all the babies in my loss community.  Thank you Alicia, John, Cynthia, aunt Jocelyn and April, for lighting candles and sharing in the wave of light.  I will do this again on October 31st, to close out this month of awareness.  I hope you will join me.

As I lit these candles, I wished our babies well.  I told them that their parents were thinking about each and every one of them.  I told them to fly high, smile, and know that we love them, no matter where they are.  I told them that we think about them every day, and they can rest assured, that they will never be forgotten.  Fly high little ones, soar into the clouds, and bless us with the peace that you have been granted.

Breaking the Silence - Part I: Mentioning my child's name

My absolute worst fear came true.  I prayed and prayed every night for God to watch over my son, Preston. I prayed He would watch over Preston as he slept, while my husband and I weren't there or were asleep ourselves.  My prayer was answered for 16 weeks but on March 13th, my little boy did not wake up from an afternoon nap while at daycare.  There is no reason.  There is no one to blame.  That perhaps makes it harder.

I've been blessed with having an amazing support system throughout this painful experience.  Unfortunately, not everyone has the same.  There are many parents out there who actually have to deal with cruelty on top of ignorance when it comes to losing their baby.  I'm hoping that we can create better support systems for others who unfortunately will walk down the path that I am currently living through.  Some walking through it this path experience a loss during pregnancy, but it is a loss nonetheless.  It is no more or less of a loss. 

Don't get me wrong.  I don't want everyone to understand exactly what it is to lose a child, whether through miscarriage, stillbirth or infant loss.  The only way to truly understand is to live it, and I wish no one ever had to live through it.  Sadly, reality had proved these things will continue to happen, which is why I believe it is a great reason to start breaking the silence.  There are many other taboo subjects that are much more mentionable now when you compare it to 20 years ago.  Take AIDS and suicide for example.  They are much more prevalent in discussions.  And not in a derogatory way.  There are fundraisers to raise money in the hopes of finding a cure for AIDS.  There is a lot of talk about mental health, especially in the light of Robin Williams' recent death.  While there will always be cruel people out there ready to take stabs at people who are grieving, suffering or struggling, I believe the majority of people are good hearted.  If these topics are now less controversial to mention, isn't it foreseeable that we could make miscarriage, stillbirth and infant loss less of a forbidden topic?

In the first part of this Breaking the Silence series, I'd like to tackle the following subject: Mentioning my child's name (or my pregnancy).  I believe that many people who have not experienced a loss think that saying Preston's name will bring me to endless tears and send me into a downward spiral of pain.  Hearing my son's name mentioned does not remind me of his death.  I think about him every day and I know that he is no longer around.  I suppose I could be caught off-guard if someone mentioned his name, and it could subsequently make me cry, but it doesn't mean that you've reminded me of his death.  It doesn't even mean that I'm crying tears of sadness.  You could totally move me in a positive way by mentioning his name, bringing me to happy tears.  The fact that you think of him, or that you thought about my pregnancy, it makes me happy.  It means he's impacted your life, if only a little.  He left a footprint in our world.  He is doing what I think he was born to do - spread happiness.  "There is no foot too small that it cannot leave an imprint on this world".

There are instances where hearing Preston's name could be hurtful, like if someone said: "Preston's in a better place"... No, no he's not.  But, anything like: "I thought of Preston today", or "I think Preston would have liked this", or even "I dreamt of Preston" and "I think of you and Preston a lot".  These things mean the world to me.  They are touching and to a certain extent, bring me peace.

To assist in my goal of breaking the silence that revolves around mentioning the name of an angel baby, whether this baby became an angel in utero or after being born, I posed the following questions to fellow angel mamas on the "BabyCenter" forums:  How do you feel when someone mentions your baby's name and/or your pregnancy?  How do you feel when no one mentions your baby's name and/or pregnancy?  I received several answers and several of these answers are below.  I am hoping that these testimonies will aid everyone in seeing how important it is to break the silence that surrounds miscarriages, stillbirths, and infant loss.

One mama said the following:

When people mention my pregnancy my first reaction is to be sad but once I start talking about them it actually makes me feel better.  By talking about them it reminds me that yes they were real and as much as it hurt to go through two miscarriages they actually made me stronger, a better mother to my 6 year old, and they have brought me and my husband so much closer.  If I didn't talk about them it would feel as they never existed and they did.  I have two angel babies that I will forever love and will think about everyday.  I wouldn't want them to be a secret.

Another mama that I have gotten to know pretty well, Kerri, shared that no one talks about the daughter she lost four years ago, little Jaylynn.  She shared that having no one in her life that mentions her little angel hurts and drives her crazy. It might have happened four years ago, but she still loves Jaylynn and wants to talk about her always and forever.

Another mama share:

No one brings up my Benjamin to me.  I was 15 weeks pregnant and although tiny, I delivered him & held him and loved him.  I had him cremated and he is at home with his family.  I want to talk about him.  No one does.  When I try to talk about him I am ignored or shut down and the topic is quickly changed.  I have learned not to talk about him. (...) I hope no one ever feels as alone as I have in the loss of my child.  What should be taboo is people not acknowledging a life and death and grieving family.  No matter how big or small that life was.

As you can see from these comments, many families deal with not being able to share their pain.  They are unable to mention the life they created and carried, even if for a short while.  They are already grieving the loss of a baby, and have no one to talk to.  They are "shut down" and pushed away.  It is understandable that the subject of miscarriage, stillbirth and child loss are painful ones.  Keep in my that grieving parents already deal with daily pain.  Letting them talk about their child releases some of that pain, and helps them acknowledge that their baby existed.  Is there a reason the world should be so closed to hearing their story?

More testimonies?

Nobody brings up my loss- at all.  Not once since it happened.  (...)  After I came home from the hospital, they changed the subject each time something pregnancy related came up in a conversation.  Even now (almost seven months later), it's still an awkward subject for them...  It just makes me feel... I don't know, guilty in a way?  That I'm putting them in such a difficult place.  I wish the subject wasn't so taboo, and that people were okay to talk about it.  I feel so alone, and I miss my baby every day.  It sucks that I feel like I'm the only one who remembers him/her.

I love talking about my Silas...I think it makes others uncomfortable how open and comfortable I am talking about my angels (...) but I'm never silent about them. 

My baby Madelyn was born at 28 weeks and only survived for a few hours.  I just returned to work last week.  Everyone was instructed not to ask me about her but I kind of wish they would.  Despite the fact that it's sad and it might make me cry, I love talking about her.  I feel like talking about her keeps her memory alive and if no one does then she will be forgotten.  I have a picture of her on my desk and I wish people would tell me how beautiful she was.  I wear a necklace with an imprint of her footprints and I wish people would use it to start conversation about her.  I know they are just worried that it will upset me.  I guess I have to start talking about her to let them know that it's ok.

People don't know what to say, or say the wrong things.  Our culture denies death and grief.  We need to be educators for other people.  We need to tell them what to say, what not to say, what we need from them.  They do not know.  We only know because we are feeling this way.  I wish people would get more comfortable with appropriate talk.  Breaking the silence is very important. 

So perhaps part of breaking the silence lies on the shoulders of the grieving parents?  For sure, I think that it's definitely part of the equation.  If none of us bring our children up, it's highly possible that others won't either.  They could be under the impression that it's too painful.  They also very well may have forgotten.  Out of sight, out of mind?  But, really I think it's a battle that we have to face together.  As grieving parents, mention your child.  As friends, family, co-workers, just be there to listen.  If you do think about your grieving friend or their baby, tell them.  They need love and support.  And often the support they need is to talk.  Talk about their experience.  Talk about their pregnancy, or their baby.  Words of encouragement to tell their story, or talk about their baby, might be all they need from you.

One mama I've gotten to know, shared that when she and her husband decided to share the name they had found for their little girl gone too soon, Joanna Marsali, her family just looked uncomfortable.  She also mentioned sharing a picture on Facebook, one containing her husband's shoes, her shoes, and empty space and her daughter's shoes with the quote "Three sets of shoes on Earth and one in Heaven".  Every one was later acting as if there were walking on eggshells around her.  All this to say, that it's very hard for her to try and share her story, or anything about her little angel Joanna, because the feedback she gets is so negative and closed off.  Like mentioned above, it's not just about the grieving parents sharing their stories, it's about us as a society being able to listen.  Listen without prejudice.  Listen with only the intention to take in what is being said.  Listen to show you care.   

These testimonies really should make us think.  Think about what we need to do, to be more open to listening to the stories of grieving families.

I wish people would ask me about my experience with the birth and what we went through after.  I think if people knew more they would understand more, sure if I talk about it, I may cry but I am still happy to get it out.  I often ask myself "do they know we had him cremated?" "Do they know I had arrangements made for him?"  People at work and most of my family don't even know his name.  Sometimes I say his name out loud when I'm alone just to hear it.

I lost a 4 month old to lung disease..  I honestly only talk about him to my 2 close friends and my niece.. everyone else just doesn't get it.. (...)  Think before you talk.. people always say I can have another like he was a candy bar and I can just pick one up at the store.. I really wish I could talk about him more.. but to save myself from going off.. I don't bring him up much. :-(

The first week people asked how I was, but not about Hunter.  Now 9 months later, I feel like no one remembers him.  (...)  It's hard, my mom tell everyone she has 10 grandchildren.  I want to yell and say no you have more but they are not here. 

Other than my mom I have no one else to talk to about my loss. (...) 

(My husband's family) are closed books emotionally.  His mother doesn't deal well with any emotional issue and as a result she has not spoken to me once since I had our baby.  In the three week lead up to our baby's arrival when I started leaking amniotic fluid she only spoke to me to say it would be 'fine'.  It feels very isolating.  (...) I just want to shout at his family that our baby is real! (...) As the ladies who have previously commented said, I want to talk about our baby.  What makes it hard at the moment is that we are still waiting for gender tests to come back. (...) Perhaps people find it harder to relate to us at the moment because we can't call our baby by their name?  Or maybe I'm making excuses for them? (...) One of my closest friends recently asked me to tell her all about our baby and whether she could see pictures.  That meant the world.

Midnight shared:

No one asks about Chris... And it makes me sad... He existed... No one has mentioned thinking of him, or knowing that its getting closer to his angelversary/bday... And it hurts...  I talk about Jade and Chris because they existed, because I'm proud of my sons... Because I refuse to act like they didn't exist, like they didn't have an impact on my life...  I really wish that people that knew would ask about him... I love that I can come on here and talk about him and you guys will talk back with me and ask questions.  It makes me feel less alone when people ask of my angels.

As you can see, many mamas just want to share their story.  They want to share their babies with the world.  Much like mamas with living children like to share their baby's firsts, and beautiful pictures.  When you are the mom to an angel baby, you don't have too much to share, but that need is still there and it's not often met. 

I've mentioned before that we think about our babies every day.  One mom shares that no one calls her, or texts her, no one brings up her loss at all.  It feels "over", but it's not over for her.  Every day, there's that mental calculation that reminds her how much closer she'd be to having her baby.  Yet, he's buried in the woods with his sibling.  She states that the lack of acknowledgement towards the loss, makes your life even more hellish.  "The more quiet it is the more it hurts".

What a true statement.  If I couldn't mention Preston to anyone, I'd feel like he was forgotten.  I'd feel like the pain was even more difficult to deal with.  I'd certainly feel alone.  While I personally enjoy quiet things, quiet certainly can be isolating and lonely.  I can't sleep without having the tv on in the background.  The silence reminds me that I am not holding a baby monitor in my hand listening for anything out of the ordinary or a simple cry from Preston.

There are many more testimonies that I could share, but I will keep them for another day.  I think I've made the point I wanted to make.  Silence is like a blade in the already broken heart of grieving parents.  Not being able to mention our baby's name without getting the "I don't want to talk about this" look, or having the subject changed can make us feel like we are being quarantined.  Not hearing anyone mention our pregnancies or angels can make us feel like we can't share our stories.  While I personally don't feel ready to share the story of losing Preston, I think knowing that when I am ready, my support system will be there for me, makes it better.  If I didn't think I could share my story, it would make a difficult situation impossibly agonizing.

So, share this entry with everyone you know.  Your friends, your family, your co-workers, your neighbors, friends of friends.  Put it out there that we need to start taking steps in breaking the silence that surrounds losing a baby.  Put it out there that no matter how early the loss is, parents need support, they need to talk about their baby and they need to feel like their baby is acknowledged.

Dedicated to angels all across the world: Jaylynn, Benjamin, Madelyn, Elowen Bay (Ellie), Arabella Grace, Jenna Faye, Egypt, Silas, Joanna Marsali, Malakye, Samuel, Chris, Jade, Beanie, Hunter, Maliah, Joseph Dale, Diego Ramon, Victoria Lynn, Jaxson, Vida, Amia, Sadie, Anthony, Joaquin, Henry, Jacob, Abigail, Gabriel, Micah, Rain, Sophie, Davis, Arsn, Lylah Celeste, Michael, Angela, Ava Hope, Brianna Mae, Lilian, Maria, Matthew, Katie Ann, Jacob, Gabriella Faith, Ace Hope, Connor, Bella Rose, Zayra Rayne, Eddie Floyd, Hope, Hannah, Harper, Madison, Peanut, Deona Marie, Luna, Angel Ray, Davey Jr., Barrett, Anthony, Sam, Emma, Sammuel, Kamryn Michael-Wayne, Sara Brielle, Betty Jean, Xochitl, Salem, Jeffrey, Ryder, Devlin, Benjamin, Connor and of course, my two angels, Baby H and Preston.

Daytime drama

No, I'm not talking about drama in the office, sheesh!  I'm talking about soap operas.  While the fan base for soap operas is obviously lower than the fan base for primetime television, I don't think there's a more loyal fan base.  At the same time though, how much viewers are missed when the tv ratings are collected?  I work during the day, I only have a few options to watch General Hospital. Use my DVR or back when I started watching it, my VCR.  Watch it "On Demand".  Or online on ABC.com.  While online views may have started being accounted for, I highly doubt that they can count the DVR views.  Who knows.  All this means is that soap operas are a dying art.  It doesn't totally make sense to me since the main reason there is a decrease in viewers is that most families have two incomes now, which means, no one is home in the afternoon to watch them.  Replacing them with other shows doesn't mean the replacements are going to do any better.  Katie Couric anyone?  The Revolution?  ABC axed All My Children and One Life to Live a few years ago and those were the replacements.  Revolution lasted 6-7 months.  Katie just had it's last episode at the end of July.  Lesson learned?  Probably not.

You'll ask me, what is so appealing about soap operas.  One of the things I enjoy the most is character development.  You see actors embody these characters for years and years.  The actors know their characters so well, that it's second nature to be those characters.  You see them evolve, unless they are so evil that they can't be redeemed and then that's usually the curtain call for them.  You see them go through hardships, where you cry with them.  You see their dreams come true (usually only to be short lived) and rejoice.  You learn to care about these characters.  You learn to care about the actors.  I can probably tell you the real name of 95% the actors on General Hospital, but I probably can't tell you half the names of the actors that play on primetime shows.  The character development really allows for incredible acting.  Hitting rock bottom and rising from it and making it believable day after day.  Most primetime shows air for a few years and while the acting isn't bad, it's just not of the same caliber.

But, is all that drama, are all those emotions worth it?  I think so.  It allows you to be in tune with your emotions.  Sometimes we get so wrapped up in our lives that we forget to feel.  We don't have outlets to let those emotions out, or we don't allow ourselves the time to let our feelings show because we're so busy all the time.  There's often at least one storyline that you can relate to your life in some way.  And, no, obviously not the crazy one about freezing the world, or bringing people back from the dead.

There is a lot of silliness like the two examples I just stated.  There's unnecessary staring, constant repeating, talking to oneself so that someone accidently overhears you.  I think that part of the show helps balance the reality of some of the storylines with fantasy.  Too much realism all the time would probably be too much for our mind and hearts to take.  At least, that's my opinion.  It also gives flexibility to the writers to bring back beloved fan favorite characters/actors. ;)

I think daytime television has also paved the way to make certain controversial subjects less taboo.  It brings more understanding and acceptance.  AIDS was taboo for a long time.  It was one of the big storylines on General Hospital in the 90s.  Then it was a big storyline on primetime (ER).  Homosexuality was featured on One Life to Live in the 90s as well.  I think the world is much more understanding of both these topics.  I'm not saying that soap operas deserve all the credit, but I think that they certainly helped in getting the world to see things differently.

Another big part of daytime television - life and death.  Killing off an important character will create a lot of drama, ripple effects and allow the show of various emotions, and often a murder mystery.  But death doesn't always revolve around important characters.  And sometimes, it involves babies or children.  Of course, that is certainly not a happy storyline, but much like other dramatic stories, it is interesting to see the different perspectives lived through by different characters.  I've seen a couple characters suffer miscarriages.  I've seen one character suffer a stillbirth.  I saw another character lose her 3 year old son to a drunk driver.  Before I started watching, there was BJ's story, where the 8(?) year old daughter of Bobbie and Tony, was hit by a car and gave her heart to save her cousin Maxie who was dying from a heart defect.  Maxie still is part of the show and they refer to that story often.  Most recently, there was the storyline of Gabriel.  He was born very early and went in the NICU.  But he was born too early and did not survive.  This story was very difficult to watch, but I think it was played out beautifully.  The pain the actors portrayed was gut-wrenching.  The mental break the mother had was totally understandable and believable.  The blame the father felt was real.  I've been there.  While it's not a story anyone really wants to see, I think sharing one perspective that is very real, is a good step in telling the world, that hey, this really happens.  Be there for your loved ones if it does.  Offer your arms, your shoulder and your ears to them.

Why General Hospital and not another?  I started watching when I was about 11.  My neighbor's babysitter would watch the show and after watching it a couple times with her, I was hooked.  While I watched on and off for several years, I haven't missed many episodes in the last 10 years or so.  Waste of time? Perhaps, but I've seen many perspectives on many different life situations.  While some of them are far fetched and will never happen, others very well could.  Having seen possible reactions and outcomes, I feel better prepared to face whatever else life wants to throw at me.

Losing my son has been the most painful experience in my life.  The drama, and comedy offered by General Hospital, has given me an outlet.  It's given me something to look forward to - like Monday's episode? Spoiler alert - is Mac okay after being shot by Levi?  What will happen to Maxie and Lulu who are hostages of Levi and his partner? Will Dante and Nathan/James aka Detective Sexypants save them?  Is Jason really alive?  Are Sam & Patrick going to get together?  Will Sonny succeed in seducing his ex-wife Carly?

And at the same time, it keeps me connected to Preston.  Yes, he had to "watch" with me.  Hey, it helped keep me awake during his late night feedings ;)

Fading laughter

Hearing that the world lost great actor and comedian Robin Williams hit me really hard today.  I didn't know him personally, yet hearing of his death brought me to tears.  Is it because I'm just too sensitive to death now?  I don't think so.  I remember being in tears when I heard that great hockey legend Maurice Richard had passed away.  I cried hearing about Patrick Swayze's death.  But when it comes to celebrities, I think those are the only ones that really moved me and I'm not quite sure the reason for it.  I never saw Maurice Richard play, but I knew how special he was to my home town.  I haven't seen all of Swayze's movies, so it kind of boggles my mind why his death would affect me more than someone else I might have followed more closely.  Perhaps it was just because of my mood that day?

I've always loved Robin Williams though.  Loved all the great voices he would do.  Just adored him in Aladdin.  And Hook.  Mrs. Doubtfire.  There are so many of his movies that I haven't yet seen.  But, he just had a way of always making me smile and laugh.

I saw a quote on Twitter today that I want to share:   

"What else can be said. I guess you never know what is happening inside another human. Be kind to each other".

This is something I've learned too well with the loss of Preston.  I'm sure if you met me on the street, you probably wouldn't know that I'm dealing with this tremendous loss.  It's not that I'm not sad because of what happened, but I try really hard not to be sad all day.  I have to concentrate on other things to avoid falling into endless sadness.  I have to work, and I do enjoy my job, but the other nice thing about work is that there's the expectation of professionalism.  I think because of this understandable and necessary expectation, it allows my mind to rest from the sorrow for a large portion of the day.  It's not to say that I don't get sad at work, or that I don't think about Preston while at work.  I certainly do.  But, I guess it's helped me learn how to hide it when necessary.  And sometimes it is necessary.  I need to be able to be happy for my friends, and family.  I need to be able to concentrate and do a good job at work, or while I cook so I don't burn down the house.  I need to be able to have a good time. I need to be able to survive.

Really you don't ever know what is going on inside someone else's mind.  You don't know what they have gone through, what they live with every day, the thoughts that they have, by just looking at someone.  At least, it would be the exception when someone is an absolute open book.  For that reason, I think it is super important to be kind to each other, and to ourselves.  Even if someone isn't being nice (I'll stay polite), there's no reason to not treat them with kindness.  Perhaps they are having a bad day.  Or perhaps, no one is ever nice to them, so that's all they know.  Who knows?

I'm really saddened to think that Robin Williams may have committed suicide.  Your own mind can be so cruel.  I am one to think that no one can be more cruel to you than yourself; no one can be harder on you than yourself.  Dealing with grief, I've learned that guilt, self-blame can be really dangerous.  It can take you to dark places.  There's no wonder that many people who deal with traumatic experiences develop depression.  It can be a really tough hole to crawl out of if you don't have a good support system.  Many people who go through a loss, are faced with depression, or suicidal thoughts.  It hasn't been the case for me, but I've come across some through my journey with infant loss.  Don't be afraid to reach out!  If you are filled with sadness, talk to someone: a friend, a family member, others going through a similar experience, a professional.  If you know someone who is going through a tough experience, reach out!  While you may hear things that are upsetting, while it might make you sad, the difference you could make should outweigh all of those things, especially if it is someone you care about.

"It is foolish and wrong to mourn the men who died. Rather we should thank God that such men lived." -George S. Patton

While I will always mourn the loss of my sweet baby boy Preston, I would agree with the second part of the quote.  I thank God every day for giving him to us, even if it was just for 16 weeks on Earth.  Having known him, loved him, held him, has changed my life forever, for the better.  While I wish I didn't have to lose him, I'm so grateful that he was a part of my life.  Robin Williams changed comedy, and was a great actor to boot.  I thank God for giving him to us, for sharing him with the world for as long as he did, for he made so many people laugh, and will continue to do so.  I thank God, for all the other beautiful human beings that have graced our Earth and have since gone.  Many of these wonderful beings were babies.  Some never got to breathe our air.  Some never got to grow for more than just a handful of weeks.  Some we'll never get a glimpse of.  But, all have impacted the lives of others.  All leave a mark.  All matter.

To all who have loved and lost.  To all who suffer in silence.  Don't keep it all inside.  Laughter may be fading on Earth with the passing of Robin Williams, but I hear the angels giggling as he makes them laugh in Heaven tonight.  What a sweet sound that is.

Slow healing wounds & patience

For as long as I can remember I've healed slowly.  Mosquito bites seem to stay forever.  When I catch a cold, I can't shake it for several weeks.  I "bruise like a peach", to quote Joey on Friends referring to Ross.  And when I get a bruise, I seem to stay bruised forever.  I've been this way for a long time.  I've read several articles that seem to link slow healing with auto-immune diseases like Crohn's.  Additionally, I feel like Remicade is adding another layer to delaying my healing powers.  You see, the way Crohn's works is that my immune system will attack good cells instead of just sick cells (like infected mosquito bites cells or common cold cells).  Remicade causes my immune system to stop attacking healthy cells, but at the same time, it stops attacking the sick cells too.  This is especially true in the first couple weeks following my treatments, which are currently every seven weeks.

I feel like I've grown to be a very patient person.  In part due to waiting for days to feel well enough to accomplish more than just the necessary tasks to get through each day.  In part due to waiting days, weeks, months to not feel abdominal pain.  In part due to living without my husband for almost a year before being able to move to the States.  And many other instances, but I think those are the most defining things that have led to considering myself to be patient.

The healing process that comes with losing a child is a very slow one.  It requires patience.  Patience to get used to the new reality.  Patience to allow certain feelings to subside: guilt, anger, sadness, numbness, devastation, to name a few.  Patience to understand that these feelings may suddenly re-emerge months, years later.  Patience to deal with others, who don't quite know how to react, who don't know what to say.  Patience with regaining certain feelings: joy, fulfillment, enjoyment, peace.  Patience to deal with others who are also mourning your loss.  Patience with others because they are able to return to their lives as if nothing ever happened.

I may not have lost Preston years ago, but I did have at least one miscarriage.  I think I had at least another one but I'll never really know since I was in the hospital with a bowel obstruction when it happened.  I was on so many drugs that I don't recalling asking them to take a pregnancy test, and while they drew blood every day, no one ever mentioned anything to me.  Perhaps they didn't want to add to my existing pain?  Or perhaps I wasn't pregnant after all.  My miscarriage and the loss of Preston, I feel have been two terribly different experiences for me.  Having a miscarriage was devastating, don't get me wrong.  It took time to get in a better place, but I think finding out a couple months later that I was as ill as I was, softened the blow.  I would have been 5 months pregnant when I had my first obstruction.  And then close to giving birth when I had my second one.  I was not a healthy person during the 4 months interval between both obstructions.  My GI always says, healthy mom = healthy baby.  I don't think our little peanut would have been healthy and I would have felt terribly guilty if that was the case.  So, once I had these reasons, it made it easier for me to heal.  I still wonder what could have been, but sadly, I don't think of this baby as much as I think about Preston.  I hope that doesn't make me a bad mama.  I would have loved this baby as much as I loved Preston.  With Preston, I fear we will never have a reason, which will cause us to always try to find a reason.  That itself, will most likely slow down the already slow process of healing after losing our son.

Preston's been gone for almost 5 months now.  It feels like an eternity.  It feels like yesterday.  Time stopped that fateful day and I wonder if it will ever start again.  I do feel like I am healing.  This blog has had a lot to do with it.  But as all my other wounds, it is a slow process.  I thank everyone who continues to have the patience to ride along with me every day.  It truly makes a difference, and I want you to know that.

Inspirational quote

There are millions of inspirational quotes out there.  You can find quotes on just about any topic.  I found myself looking at infant loss quotes when Preston first passed.  While many of them made me ball my eyes out, I think in the end they made me feel better because it gave words to my emotions.  It allowed me to release my sadness, it allowed me to do it at my pace, and it allowed me to do so during a time that was special to Preston and I, late evenings.  Late evenings were really tough on me right after we lost him.  Brett would go to bed at around 9:00 and Preston would have a feeding at around 10:00-10:30, so we would hang out for awhile, or he would nap while I cleaned.  After his feeding though, he was alert and wanted to play, so we did until his bedtime.  I would then rock him to sleep, or read to him, or sing him songs.  I think he was the only one who could stand listening to me sing, poor Preston, lol.

I was reading through a magazine a little earlier and read a quote that gave me the idea for this post:

"Be patient and persistent.  Life is not so much what you accomplish as what you overcome." - Robin Roberts

Patience.  You need a lot of patience when you lose a child.  Patience to get through each day.  Patience to learn to live again.  Patience towards others.  My biggest pet peeve right now is people complaining about petty things in life.  It's even worse when children are involved.  "My kids are driving me crazy" or "My kids are keeping me up, I'm so tired" come to mind.  The first thought that comes to my mind when I hear/see these comments - at least you have your kid(s).  But, I do have to be patient with others.  They haven't experienced what I have, nor do I want them to.  Perhaps being exhausted is the hardest thing they've had to deal with.  If they are, they're incredibly lucky.  While, I feel society in general needs to be more sensitive and open to hear about infant loss, as the parent to an angel, it doesn't give me entitlement to say or do whatever I want.  I need to have more patience in dealing with certain situations.  While I think about my baby every day, it's normal that I encounter a lot of people don't know about my loss, or encounter people who don't think about Preston every day.  It's highly possible that many people close to me think about him every day, especially if you read my blog, but even then, the sting isn't there for you like it is for me.  You all have your troubles, and I'm not hear to judge on who's got it worse.  We all deal with difficulties and there's really no way to compare them.  I feel like I'm generally very patient, and I am working hard to get rid of this pet peeve.  Time will tell.

Persistence.  I've needed a lot of persistence.  It would be so easy to stay in bed all day and just let myself dwindle away.  I've heard many times, "I don't know how you do it".  There are many days where I don't know how I do it.  But frankly, I know that I don't have a choice.  Time doesn't stop.  Life doesn't end.  While I feel that part of me died on March 13th, I'm still standing.  I still feel, I still hurt, I still smile, I still have to eat.  I still have to have my Remicade treatments every 7 weeks.  I still have to work to afford everything I've come to be accustomed to.  I still have to work to be able to provide for my future children, should we have any.  I still have to work to build up enough for retirement one day.  I still want to work, because it makes me feel accomplished.  I still want to work, because it gives me purpose.  I still want to work, because I enjoy it.  While keeping on going isn't always easy, I need that persistence in my life.  Who knows if Crohn's is going to kick me down so hard that I can't work.  I hope it's never but it's hard to have to think that one day, I could not be able to work.  I hope I'm retired by the time that happens, if it happens.  The possibility of having certain things being taken away from you gives you a different appreciation than you would have without it.  I appreciate being able to work.  I appreciate being able to eat a salad, which is something I couldn't eat for over a decade.  Thank you surgery!  While I appreciated Preston more than he will ever know, while I appreciated being a parent, should I ever be blessed with that joy again, I will have a different kind of appreciation.

Accomplishments versus overcoming obstacles.  Any accomplishment I've had has made me feel very proud.  Getting good grades in school.  Getting the administrative assistant job I wanted while I still lived in Montreal.  Getting my own apartment.  Buying a house.  There are countless things I am proud of.  Not to lessen any of these things, but I'm much prouder of the obstacles I've defeated.  I had surgery to remove portions of my bowels due to excessive scar tissue caused by constant flare ups.  This was a pretty serious surgery, but as soon as I could walk, I was walking to recover as soon as possible.  I went to the gym when my scars were healed to build up my abs, and lose some of the weight I'd gained through taking Prednisone, the devil pill.  I'm incredibly proud of how I pushed through the pain.  While I had some assistance during the first couple of weeks thanks to my friends Morphine and Lidocaine, as soon as I could bear it, I stopped using narcotics to help me through the day.

After my C-section, again, I was walking around as much as possible.  I wanted to be able to be with Preston, and I wanted to be without pain meds.  I walked through the pain, through the pulling, tugging and horrible sensations in my already scarred abdomen.  I'm incredibly proud of my recoveries especially when I think about my first surgery.  I had my gallbladder removed in 2009 and I feel like I was a wimp.  I didn't recover quickly nor does it feel like I tried really hard.  It just felt difficult and I let it get the best of me.  Granted, I was also dealing with Crohn's flare-ups, but I'm still not proud of that recovery.

Now, I'm having to overcome losing my firstborn, my only child, my sweet happy baby boy.  I'd go through a thousand more surgeries if it meant I could have him back.  I'd live my life in physical pain day in and day out, if it meant that he'd still be here.  I'd take his spot in a heartbeat.  Unfortunately, that's not how it works.  I've had to find a way to be motivated to get up each day.  I've had to find way to eat, sleep and not drive myself crazy by thinking about the day we lost him for every moment of every day.  I've had to find a way to not drown in my own sorrow.  I think my past experiences has helped me overcome losing Preston.  Losing Preston is no obstacle, it's a life altering event that will be with me every day of my life.  Without dealing with some of the obstacles I've had to deal with, I don't think my mind and heart would be in as much peace as they are in 4 and a half months later.  I think it also has to do with who Preston was.  The happiness that radiated from that little boy definitely makes a difference to me.

So keep on keeping on my friends.  Life will throw obstacles at you.  It's all about how you overcome them and the attitude that you have while working through them.  Wishing you a blessed Sunday!

Pincushion

I've often felt like a pincushion, getting poked by needles for blood tests and IVs.  I had the pleasure to once again be a pincushion last week.  One poke for my Remicade IV infusion, one poke for blood tests.  The Remicade infusions are supposed to keep my Crohn's Disease in remission.  So far so good I would say.  I certainly don't feel as good as I did when I was pregnant with Preston, but I don't have stomach aches on a daily basis.  I don't even have them on a weekly basis.  I receive these infusions every 7 weeks and I will save you the heartache of how much they cost.  I'm very thankful for insurance!  And yes, I get to be a pincushion every 7 weeks.  Not fun, but I feel like it's doing a better job than the pills I used to have to take on a daily basis...which at one point was 15!

The blood test was for more genetic testing, which my OB suggested.  The hope is that everything comes back negative and it gives me a little bit more peace of mind for a future pregnancy and baby.  The test will cover about one hundred diseases and deficiencies, but the main thing we will be looking at is the results regarding "Medium chain acyl-CoA Dehidrogenase Deficiency", or "MCAD).  MCAD is 

"a treatable inherited disease in which the body cannot turn certain fatty acids into energy due to a deficient enzyme. As a result, partially metabolized fatty acids can accumulate in body tissues, causing damage to the brain, liver, and other organs. If treated early and consistently, people with MCAD deficiency can live normal lives."

(Source - Counsyl website - https://www.counsyl.com/services/family-prep-screen/diseases/medium-chain-acyl-coa-dehydrogenase-deficiency/)


Apparently, MCAD has been associated with SIDS.  While the study is rather recent (~5 years), if I'm not a carrier, it could give me a little peace of mind as to not losing another child to SIDS.  This study states that it's "possible" that undiagnosed MCAD could have caused SIDS.  Hopefully the results come in this week or at the latest, early next week.  Think good thoughts for the results to be negative.  If they are positive, we'll have hubby tested and go from there.

Fears are interesting aren't they?  I used to be afraid of needles.  I can remember being in grade school on the days where we would get our immunizations.  I hated it.  Honestly, couldn't care less now when I need to be poked.  Funny story from when I was in the hospital in 2012, forgive me if I forget which time.  I want to say the first time in May?  I had an IV, since I was NPO (nothing by mouth) due to the bowel obstruction.  The IV gave me nutrients via saline solutions.  The IV gave me pain meds and nausea meds.  But I still had to be poked every morning for blood draws.  This one day, they had to change my IV (it only stays in one area for 2-3 days before they have to change it as to not damage the vein).  They undid my IV, and then something must have come up because at least an hour passed before they tried to get a new line in.  One nurse tried.  Another nurse tried.  The head nurse tried.  Then they called the big guns, the flight of life paramedic.  She couldn't do it either.  I say big guns, because the flight of life paramedics are supposed to be the best at putting in IVs, since they have to get them going in cases of life or death.  They eventually had to get an ultrasound machine, to find a vein, to be able to get the IV done.  I had a good laugh.  I'm sure morphine helped, lol.  Needless to say, I've never been poked more in my life and I'm not afraid of needles anymore.  I don't really feel afraid of much anymore.  Side effect from losing your baby?  Highly probable.  I could be afraid that the results of this test will show I'm the carrier of MCAD, or perhaps something worse.  But what's the point?  Life is going to throw at me, what it wants, and I will just have to find a way to deal.  I've done it so far, haven't I?  Is it fair that I've had to? No, but life isn't fair.

Perhaps, I'm a pincushion for needles, but everyone is a pincushion to something.  We all have our troubles, our obstacles to overcome.  We all have "our thing".  They aren't all equal, but no one person is the same, so someone else's struggle might seem miniscule to me, but it can be like climbing Mount Everest to another.  When we were younger, we were taught, "don't judge a book by it's cover".  Everything isn't what it always appears to be.  Be kind, you never know when you'll make someone's day.  Someone might seem to be doing fine, but down under, they could be going through the toughest thing they've had to face.