Well I think this will be the last post for this blog, I’m ready
to wrap it up. But I wanted to share this before I do.
I have been wanting to write this post for
sometime now, I just wasn’t ready to try and tackle it, but now I’m going to
try. First I have to say that everyone’s experience with losing a child
is different, but a lot of the feelings are the same and I want to try and tell
you about it and then give you some ideas on how you might be able to help
someone, if you ever need to.
As I was reading over my blog posts after
Xander died I realized that I basically only wrote the easy stuff. I
wrote things I wanted to remind myself that I believe,feel and know. I
didn’t write about the really, real stuff so now I’m going to try, but it’s
hard. I want you to know that this is the UGLY side of it all. I
have written the other the hope and faith side (sorry all of those are on my
family blog) but this is also part of it and I want people to know.
I keep going back and forth on whether I’m
ready to share this first part, but I think it’s important to realize that when
someone’s child dies, that they then have to physically deal with that not just
emotionally. Never mind, I tried to write about it and I just can’t
do it. Just know that it’s hard to see (and I mean literally) your child
not living anymore. Then to have to deal with it, those memories are
hard.
First I want to clear up some
misconceptions, I have 6 children (now 7!!), just because Xander died it
doesn’t mean he is not worth counting among our other children. If your
mom died you wouldn’t say you didn’t have a mom anymore. It’s so weird that
people do this but they do and it’s highly irritating. Also just because
Xander was a baby when he died doesn’t make his loss any easier, I’m not sure
why people think this either. I just have fewer memories of him and that
sometimes really ticks me off, but it’s never easy to lose a child, I don’t
care how old they are. It is also NOT easier to know your child is
going to die, there is no preparing for it. There is NO preparation that
you could make, to make yourself “ready” for the pain of it. It’s just
makes the pain start sooner, it’s not better or worse to know or not to know,
it’s just different.
When your baby dies after delivery, you
still have to deal with all the post pardum stuff, but without the best
part. It’s seriously is one of the worst things imaginable, recovering
from having a baby without being able to have your baby. I had a c –
section so at first I couldn’t even cry, or sob like I wanted too, because of
my incision. Then your milk comes in and there is no relief and after nursing
a lot of kids it took my milk forever to go away. It’s like your body is
betraying you. Then going to your post partum checkups is
torturous. When I went to my one in Seattle at first a nurse came in with
my chart, and on it on a little purple sticky note, it said fetal demise.
I seriously lost it when I saw that, you would think they would have figured
out to remove that kind of thing before entering a room.
The first month-- was pure and utter
torture, there is no escaping the crushing, suffocating pain. Even sleep was my
enemy, I couldn’t sleep very well and then I didn’t want to because when I did
I would have these horrid nightmares, only when I woke up my nightmares
were real. I would dream about doctors handing me dead babies and saying
“I’m sorry there is nothing we can do.” over and over again. There
were others too, but that one was the worst. I hate those words so
much…”there’s nothing we can do” they still haunt me. It hurt so
bad, sometimes I wanted to bang my face against a brick wall, I wanted my body
to hurt as much as my heart did. I liked pain, I wanted to hurt
physically because I hurt so bad emotionally. Sometimes I wanted to die,
because there was no relief and because I knew that was the only way I could
see him. I felt out of balance, lost, overwhelmed and angry, so, so
angry. It’s hard to understand why your child had to die. No,
answer seems good enough. It’s like you’re lost, you do stuff, take care
of people, but you’re not really there. You feel like you’re walking around
on a different planet than everyone else. I HATED it when people would
ask me how I was. Every time I would think “HOW THE @#%$ DO YOU THINK I’M
DOING, PRETTY @#&%^ BAD!!!!” I wanted to rage and storm at the world.
I wanted to scream and scream and sometimes I did. You very quickly come
to the realization that you will NEVER be the same again. You will never
totally be okay again…forever.
It was exactly 4 weeks and 6 days when my
heart finally died. It crumbled under the strain, I couldn’t take it
anymore, so one day I told God that I couldn’t stand it and I didn’t care what
he did but I needed it to be different. I woke up the next morning feeling
totally apathetic to the world, I was 100 % numb. It didn’t last long and
I don’t know that it was necessarily better it was just different and I was
grateful. The next 6 months were very much a roller coaster ride of
emotional lows and downs. Struggling and struggling with it. You
lean on your faith and what you believe but it still hurts, I know I’ll be with
Xander again, but it’s horrible that I can’t be with him now.
It’s hard to get use to the feeling that
someone is missing. You know sometimes when you’re gathering your family
together and you look around and it feels like someone is missing. Well
for me it always feels that way, there is no escaping it because someone is
missing, and I hate it. I want people to know someone is missing,
whenever we are together and meet new people, I want to scream at them “but
this isn’t everyone..this isn’t everyone.”
Then there is the guilt, I’m not sure if
all parents feel guilty but I’m guessing a large part of them do, because you
are their parent and it’s your job to protect them.
I prayed for a miracle that never
happened, that’s hard, especially when you believe in the power of
prayer. I know God could have healed Xander but he didn’t…he
didn’t. And I knew that he wasn’t going to. (but that’s a whole different
blog post) You feel like you must be some horrible person, to have to endure
this kind of pain.
Then the real miracle happens.
Overtime the pain isn’t so suffocating and you start to cry a little less, and
then you feel guilty about it. How could you ever feel better, you feel
like a jerk. Sometimes I don’t want to feel better. But it happens,
thanks to the grace and love of God and His Son you start to heal, a little at
first and then just enough that you can start to pretend. Pretend that
you’re really there, and pretend that you care. I haven’t progressed much
past the pretending yet. There is a lot of stuff I just don’t care about
anymore and I doubt I ever will again.
Don’t expect me to ever be happy about him
dying. It’s not going to happen. I find happiness in the fact that
I know I’ll be with him again, but that’s were it ends. I can and will be sad
about him dying forever and that’s okay.
I didn’t like being around other people
for a long time. I wanted zero expectations on me and on my time.
Grief is so unpredictable, you never know
when it’s going to smack you in the face and leave you broken once again.
I’m still new to this path, and there will always be part of me that is sad,
until I hold him again. And as his mom I wouldn’t have it any other way,
it’s my grief to carry and I do it willingly for him.
I also wanted to give you some ideas of
things to do that are very helpful.
Remember for them it's going to get worse
before it gets better. At first people are reaching out and showering love on
you but soon everyone goes back to their normal lives and your life is still in
utter pain; you can't return back to your normal life because it's gone. So
slowly things become worse, as it starts to really become real, that this death
really did happen and there is nothing (for now) that's going to change that.
Be nice to people. You just never know what
someone might be dealing with. I had this experience 3 weeks after
Xander passed away.
I was at a store with two of my little
ones, trying to get some grocery shopping done. When once again I was
crumbling, so I pulled my cart out of the way and was trying to pull
myself together. My 3 year old was in the basket of the cart and she
started to whimper very quietly, not anything serious. There was an older
lady next to me looking at movies, I was pretty oblivious to everything right
then just trying not to go into fetal position screaming my face off right
there in the middle of the grocery store. The older lady says to me “your
daughter is crying” (which she was NOT doing) I sort of looked over at
her but mostly I ignored her comment. Then when I finally decide that I
could move on without falling apart I hear the lady say “probably because she
has you for a mother.” So obviously that wasn’t very nice or helpful to
hear right then. SO BE KIND, BE FORGIVING, BE PATIENT to everyone some
people are dealing with a lot.
Next be there. If you’re the best friend, mom, sister whatever your job is
going to be a long one, at least the first year if not longer. I’m going
to use real names of people that helped me because I want them to know what a
HUGE difference they made to me and are part of the reason I’m not in a padded
cell right now. First my friend Susan literally called me every day from
the time I found out that Xander was sick until well, a long time after he was
gone. This wasn’t always easy you see, because Susan was pregnant too,
and due only 3 weeks before I was. Sometimes her instinct was to stay
away because she knew it would be hard for me to see her. And it was, BUT
she asked me what I wanted her to do, we had a real conversation about it, she
didn’t just disappear because it was too hard to deal with. In the end I
needed her more than I needed not to see her. I always thought of those
calls as my –make sure Jaime doesn’t want to jump off a cliff today,
calls. My friend Keely did the same thing calling almost everyday and
just supporting me. The conversations weren’t always long, and sometimes they were just about ordinary life, but
I needed them. Both of these awesome ladies helped me, so, so much.
Find someone for them to talk to that has also lost a child. This is where my friend Ashlee comes in. Ashlee lost her son almost exactly a year before we lost our son. Having her tell me that it would get better, that eventually the good days would out number the bad was so important. I clung to those words like a lifeline. It was hard to believe, but I trusted her. I really only wanted to get comfort from someone who knew. It’s hard not to think that-- no one else could possibly understand what it feels like to lose a child. Other people’s comfort didn’t mean as much to me. But that doesn’t mean you shouldn’t offer it, you NEED to, but just know that it’s really, really helpful to have someone there that understands exactly what you are going through, it just helps.
Listen if they trust you enough that they start
talking to you about their child, it’s because in that moment they NEED to talk
about it, so listen! If I trust you and you talk to me long enough I
promise I will probably talk about him. It’s hard not too, it consumes my
life. Example. One time I was talking to someone I considered my friend
about Xander, I just needed a release in that moment and I happened to be
talking to her and she interrupts me and says “well I don’t want to remind you”
or “make you think of unpleasant memories” something like that. Let me
tell you that, that is so ridiculous in so many ways. First to think that
I wasn’t thinking about him already is just dumb. You do nothing but
think about it, for a long, long, long time. It’s like you are being
smashed by this mountain, and someone comes along and says “well, I didn’t want
to remind you that you are being smashed by a mountain.” Like you could
forget. Plus talking about him is not unpleasant, I love him and all my
memories of him are very precious to me, not hurtful. Just listen, it’s
easy and just so you know it’s okay to ask questions. Don’t worry, if I
ever didn’t want to answer a question or talk about it, I would just tell
people that. Trust me you’re not going to force them to do something that
they don’t want to do.
Reach out this is more for friends and extended
family. Call, they probably won’t answer but that’s okay leave a
message. E-mail, send a card or flowers, text, FB them, do
something. Not doing anything is never the right answer. Don’t pretend like it didn’t happen because
it did. All you have to say is that you’re sorry. That’s it and it’s easy.
You can also give relief. Do laundry, bring dinner, take the other
kids for a while. I had a friend that would send me funny stories that
she wrote. Think and pray about it you’ll know what to do, just do
something. I can’t even begin to name all these people, but you know who you
are.
Remember, write on your calendar
the 1 month date (and other dates) and send an I’m thinking of you message. I
always love it when people remember him.
Don’t forget about DAD. Men and women grieve differently, but that doesn’t mean that the dad isn’t hurting just as much as the mom. He will need just as much love and support as the mom does. So please don’t forget him, it’s hard to see your husband hurting and know that because of my own grief that people often overlook his.
Allow them to Serve Obviously they won’t be able to do this at first, but let them do things that serve others. I started with my own children, instead of lying in bed all day and crying my face off like I wanted too, I made myself get up and serve my family. If they are ever going to find themselves again they need to lose themselves in service to others. I know to some people this will sound counter intuitive and you would want to tell them to take care of themselves first. But really they need to do both. So if they volunteer to do something, let them.
Pray for them, they are going to need it for a long, long time.
Be patient, remember you are going to be able to
move on a lot sooner than they will. They won’t ever totally be over it
so don’t expect that of them.
Don’t talk about them, talk to them! They’ll never know you care, if you don’t tell them. Don’t just ask their best friend or mom how they’re doing ask them.
I know there is probably other stuff, so
when I think of it I will add it. This will probably grow and change as I
move down the path. I hope this gives someone some ideas and let’s
someone else know that they are not alone in their grief and pain. Feel
free to share it however you feel like you should. And if anyone else
thinks of something that really helped them through this process, please leave
a comment.
--Jaime
, but it also hasn’t gotten any worse 
. He is still growing at an appropriate rate without the edema he is the normal size for a 24 week old baby, and his heart beat is still a normal 135 bpm. So we get out of radiology really quickly and our next appointment isn’t until 3:30 pm. We take a little walk around the hospital until 3:00 and then go check in at MICC. Then we wait, for 2 hours and at 5:00 are are finally taking into an exam room. The nurse checks my blood pressure and all that stuff, and some hospital apology person comes in and apologizes profusely and gives us free parking for our long wait. After she leaves a social worker comes and talks to us for about 15 min. That was really, really hard, but good. We have a better understanding of what to expect, what we can ask for, and what kind of things we need to be thinking about if he is stillborn, or if it looks like is life will be brief. Man, that was a hard conversation to have, but I know it’s something we might be dealing with, and I feel better knowing, than not knowing. So finally the doctor comes in and around 5:40 p.m. and we come up with a plan that makes me feel like we are giving this baby his best chance at life. First she explains to us about what a healthy babies prognosis would be starting with birth at 24 weeks (about 21% survival). Then she works her way up to about 28 weeks, where the prognosis is much, much better, and she says they pretty much don’t expect to lose a baby who is born at 28 weeks in 2012. But now add on top of that, that our baby is not a healthy baby and that he is hydropic, and hydropic babies can be hard to intubate because of all the swelling. So she then asks us what we want to do, and I have no idea what she means, so I ask “what are we deciding?” Then she explains that she doesn’t know what kind of a sick baby he is and she can make better choices about his care if she can monitor him for an extended period of time, and she needs to know from us when we want that monitoring to begin. After discussing it a bit more we decide between 27 and 28 weeks. So on March 24th, I’ll go down to Seattle and he’ll be monitored for 12 –18 hours and I will get the first dose of a medication that will help his lungs. After that is over and she can see how he is acting over an extended period of time, we will make some more choices. From spending that moment on in the hospital in Seattle with him being constantly monitored, to me physically moving to Seattle and coming in 3 times a week for extended monitoring, until it gets to a point where delivery is his best option. There is also a procedure she can try that removes some of the fluid around his lungs, but that is really risky and not something we are going to try yet, but maybe if he gets older. Now we really, really need him to make it to 27 weeks 4 days, roughly 3 weeks and 2 days away. It doesn’t sound like a long time, but with a baby who is as sick as our baby is, it is a long time and it will feel like a year I’m sure. We realize that our little guy has some HUGE obstacles still to overcome, and even if he does make it to birth, he will still have a hard, hard fight ahead of him, but birth is a good thing and it does increase his survival rate (depending on how many weeks he is at delivery). Right now he has about a 10 –20 % percent chance of survival, but if he can make it to birth and past the first 24 hours his survival rate goes up to 50 –60 %. And I feel like if he is being monitored very closely then he will have the best chance at a live birth. So we are praying he can make it to birth, and that, that birth can happen sometime after 30 weeks. This is kind of the simplified version of everything, there are so many other things that I could go into but don’t really want too. So what are we going to do if I have to spend the last weeks of my pregnancy in the hospital or living in Seattle? I have no idea, we are trying to come up with a plan for the other kiddos. Cam’s parents just left on their second mission (Ukraine) and my mom can’t come until May. I’m sure we’ll work it out somehow but it gives me a head/heart ache just thinking about it. 
