Medical Bills and Financial Assistance
April 21, 2020
Guest Blog: Reflections on NICU Experience by Ali Dunn
June 28, 2020
Medical Bills and Financial Assistance
April 21, 2020
Guest Blog: Reflections on NICU Experience by Ali Dunn
June 28, 2020

Guest Post: Loss Parent Sharing Advice: Shannon Mysliwiec

We had the pleasure of meeting Shannon at our support group after losing Colette.  She has become such a dear friend and the advice she shared as advice to other loss parents was so awesome, we asked her to do a guest blog.   Written by: Shannon Mysliwiec My husband and I are loss parents.  My whole life I thought I would get married and have kids.  And ever since I can remember, I always wanted twins. When we found out we were pregnant with twins, I could not have imagined anything better.  I married my best friend and now we were expecting the best surprise of our lives. But all too quickly that came crashing down. We lost Leland and then 4 weeks later we lost Lawrence.  I can, without even a hint of hesitation identify the two best and the two worst days of my entire life. The two best … my wedding day and the birth of my living son, Weston, who was born after losing the twins.  The two worst … the day we lost Leland and the day we lost Lawrence.   Before losing my own babies, I never gave child loss much thought.  But after losing the twins, I have unfortunately realized it is much more common that you might think.  And once you are in this awful club for which you NEVER applied for membership, you realize how many others are in the club too.  It’s five years later. Some days are good, some days are great. Some days are dark. And some days are as dark now as they were five years ago.  Being five years out from losing the boys, I have learned or realized some things that may help others.
And once you are in this awful club for which you NEVER applied for membership, you realize how many others are in the club too. 
You will never get over losing your child.  Don’t try to get over it. It’s a part of you.  You will survive and adapt to the new norm. You will never get over the loss of your child so do what you need to do to survive.  Hole up in your house. Get drunk. Go on anxiety medication. Discover alternative medicine. Get mad. See a therapist, social worker or the like.  Do what’s in your gut. Do what you need to do survive.  
You will never get over the loss of your child so do what you need to do to survive. 
Accept that not only will you be a different person, in the way you think, act, do absolutely everything, you will also look different (at least this was true for me).  Even now I sometimes catch a glimpse of myself in the mirror and have to do a double take because I don't recognize the person looking back at me. In the beginning, I felt somewhat prepared for all the "stupid" things people might say.  I had heard that several times and read about it several times … people will say stupid things.  What I was completely unprepared for was that the majority of people said absolutely nothing at all.  I mean NOTHING.  I was floored, and still am, that most people couldn't even (and still can't) muster up "I am so sorry.”  I guess it's a (horrible) warning that when you need people to say something, most won't.
I was floored, and still am, that most people couldn't even (and still can't) muster up "I am so sorry.”
Your circle will change.  You will lose friends.  Some people just won't understand (and more importantly won't try).  Some will be waiting for you to "get over it."  Some can't handle it and will do everything to avoid you.  You will find friends.  It was, and still is, amazing to me the folks that come out of the woodwork and are there for you.  There may not be many and there may not be enough of them, but they will show up.  It's a club that so many are a part of that you would have never known until you became a member too.  The most surprising for me was my co-worker.  She was a casual friend at work and then really stepped up after I lost the twins.  Find a group, some sort of support group, whether it's informal or formal, or find at least one other person that is a loss parent.  They are the only ones that know what you are experiencing. Remember that not all loss parents feel the same way you do.  This one is hard for me.  While they have had a similar experience, not everyone feels the same way you do.  I know another loss mom that firmly and whole-heartedly believes that God has a plan and her loss was part of that plan.  For me, that is a bunch of CRAP, but I can respect that it works for HER.
Remember that not all loss parents feel the same way you do. 
When my husband and I went to our support group regularly, I would leave every month and say "I don't know how that couple is surviving, their story is so unbelievably sad.”  My husband would always remind me that they are most likely saying the same thing about our loss story.  It certainly wasn't that I forgot how sad our story is.  I think just after time, and telling the story so many times, it just became part of our life and I could get through the story without crying as much. It's ok to stop talking to people, whether it's forever or for a certain length of time.  It's ok to withdraw.  It's ok to react to people. Utilize email.  If you want or need to say something to someone but can't find the way to actually say the words, USE EMAIL.  But I also recommend writing it one day and reviewing/sending the next day.  This tactic that was life-saving when I went back to work.
It's ok to stop talking to people, whether it's forever or for a certain length of time.  It's ok to withdraw.  It's ok to react to people.
You will view shows, books, everything in a whole new way.  Shows you once loved will present themselves in a way you never interpreted before.  When I was off work for two months following the loss of my twins, Grey's Anatomy was on daytime television a LOT.  I used to love that show.  But during that time, I began to resent the "doctors" and the casual way they viewed another's life at times.  For my own well-being, I stopped watching. I found it very helpful to find ways to release my emotions.  Write, or keep a journal.  This was and is still very much my saving grace.  I am old-school so I bought a journal that is dedicated to any thought, experience, dream, conversation, etc. I had/have regarding the twins.  Others blog, but you get the idea. Cry any time you want to, need to, feel the urge.  Don't worry about what others might think, even if you are on the train, in a restaurant, etc.  Cry. Remember your spouse most likely grieves differently than you do.  Try not to get mad at him or her.  You are both trying to survive what is most likely the worst thing that has (and will) ever happen to you.
Remember your spouse most likely grieves differently than you do.  Try not to get mad at him or her. 
Remember that you did not fail your child.  This is the hardest, at least for me anyway.  When it comes down to it, my soul tells me I failed the twins, but my head tells me I did not.  For all of my loss parent friends, I truly believe they did not fail their child.  However, when I turn that same thought inward, somehow it just doesn't fit.  Even though it is incredibly hard not to think you failed your child, try to remember you didn't.
Even though it is incredibly hard not to think you failed your child, try to remember you didn't.
Find connections with your child.  Name your baby.  We didn't know the boys were boys until a few weeks after losing them both and we didn't name them for another few months.  But once we named them, it was a relief.  When I talk about them, I use their names often.  I love it when others use their names too.  Create memories.  For the rest of your life, you will wonder what it would be like if your child lived.  I have developed their personalities in my head and try to create these false memories. Talk to your child every day.  If you have living children, talk to them about their sibling.  My son has a relationship with his angel brothers.  He loves them, plays with them, sees them.  This gives me some peace.  I don't talk about the twins all of the time with my living son, but enough.
Talk to your child every day.  If you have living children, talk to them about their sibling. 
Stay connected with your child.  Look for and believe in signs because they ARE from your child.  I also chose to go see a medium and it was very helpful.  Personally, I believe in the afterlife and that some people on earth have a stronger connection to those that have passed on.  The medium I saw gave me a few "answers" for which I was seeking.
Stay connected with your child.  Look for and believe in signs because they ARE from your child.
I started wearing mostly black because I felt like it helped me “hide.”  This really helped when going back to work. People commented on it more than you might think but I just didn't care.  When you go back to work, find a "safe" place where you can go.  I was lucky enough to have an office with a lock on the door.  Find some place where you can hide when you need to compose yourself. I found it helpful to have a script ready in my head for the times people did ask questions, or actually said something to me regarding the loss of my babies.  I eventually learned to have a few scripts ready.  Be prepared to use them.  Know that even with scripts, you WILL get totally caught off guard more times than you think.  One minute you will be “fine,” and the next you will get caught off guard, and then become a total mess.  Be prepared to be mad at yourself when you don’t use your scripts and to feel guilty when you answer a question one way, knowing it's not the truth.  Five years out from my loss, I still get caught off guard.  Any time family comes up, you usually have a split second to decide if you will share the truth or not.  When I don’t share the truth, I feel guilty.  My husband has found peace with saying he only has one child when asked about our living son.  For him, he knows the truth that we have three children.  He is fine with others not knowing the truth.  I still feel guilty every time.
Any time family comes up, you usually have a split second to decide if you will share the truth or not. 
There are triggers everywhere.  They may lessen with time, but they are still there.  Share those triggers with your partner and other loved ones.  Sometimes it's like you go back in time.  I am five years out as a loss parent and sometimes I will have a day that puts me right back to the days I lost my Lawrence and Leland.  It's crazy.  And it usually happens without any warning.