Archive for the ‘Support’ Category

That when you don’t obey societal norms even in something as intensely personal as grieving, how much flack you can get.

Because I do a blog that I talk about things straightforwardly on, I apparently tick some people off.

———— Could this be because I force people to ask themselves uncomfortable questions?

Because I can say straightforwardly that my kid is dead, people flinch away from me, and act like I’m some sort of heartless monster.

———————-My kid is dead. I’ve grieved for her. I will always grieve for her. But life goes on. Bills need to be paid. My other child needs me. Etc. There’s just no point to wailing in a corner, wearing black all the time (though I do frequently anyways because 90 percent of my clothes are black), and putting my pain and suffering on display. My pain is exactly that. MY pain. If you can’t handle that I’m not sobbing on your shoulder so that you can feel like you’ve *done* something, well…sorry. 

Now whether I’m saying I’m sorry, or saying you’re sorry…that’s up to you to figure out.

Because I reject most flowers, and make my dislike of cards known, so it must obviously a be a personal snub. I must be a snobbish grouch.

———-Uh, no? But keep your meaningless cliche actions to yourself, and buy me a meal, coffee, or a box of tissues instead.

Because I’ve suffered a loss, so many people that were supposedly great friends of mine have withdrawn so quick I can see the smoking tracks of their feet in the distance. Yet, I’m supposed to feel guilty about this? I’m supposed to initiate all the conversations? Uh… no. I’m not asking for deep insightful conversations where I gripe and moan about my life. Sometimes I wanna discuss supernatural and gripe about food, dagblastit! But it is what it is, and I need someone to pull me into that. I just don’t have the mental energy to keep reaching out to people.

…. Its also interesting that so many people seem to have already brushed George and me off. She’s dead, and I’m reclusive because of the sheer amount of hurt I’m in, so … out of sight, out of mind? Just another dead baby that isn’t theirs, so they don’t have to worry about it.

…………..

Side note: I recently took an Asperger’s Assessment, and scored high enough that I should apparently get evaluated professionally because I meet the criteria for having it.

That would explain a lot.

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Asking for Help- Part 2

Parent of a child with a Terminal Illness: Well, life just gave you a swift kick in the figurative ‘sack, didn’t it? When your child is diagnosed with a terminal illness, your life turns upside down in a heartbeat. You grieve – you go through the stages of grief again and again and again. It becomes a hole that you can’t climb out of because you know that one day you’re going to lose your child.

To quote Grimm’s Aunt Marie “2 days, 2 weeks, 2 months. Nobody knows.” All you know is that it is going to happen. That one day you will bury your child, when it should be your grown up child burying you when you’re old and gray.

Sucks syphilis-infected misshapen Liger balls, doesn’t it?

…and oh, my god, the stupid things people can say to you. “Well, no one ever really knows how much time they have..” Riiiiiiiiight. Because that’s comforting. Really, it is. (Rolling my eyes so much its hard to concentrate on the screen.) Its darned easy to say that when you can at least have a pretty good idea that you/your child can expect to go to prom, graduate high school, etc, barring some major life event. Whereas parents of children with a terminal illness? We can’t have those dreams.

Well, we can have them, but we know they’re probably just that – dreams.

…or, or… “Well, new discoveries and advancements are happening every day!” …YES! They are! In..not rare disease fields. In fields where tons of money are being thrown at things, yes, yes they are.  But for those of us who are unfortunate enough to not only have a child with a terminal illness, but to have a child with a RARE terminal illness?

Not only did life kick us in the ‘sack, but it also gave us a pile-drive into a steaming mound of horse crap.

I’d like to take the verbal pat-pats people give, give them rusted metal form, and shove them in all available orifices on that person. Yes, I know that was harsh. No, I don’t particularly care… because the people who have said that non-comforting crap to me should know me better than to say it to me.

I’m still searching for ways to cope with my daughter’s diagnosis, so I’m not sure I can give the best advice on this.  Every time I think I have a good handle on it, I enter a different stage of the grieving process.

So I guess..

My advice: Pictures. Take lots and lots of pictures. Take pictures of them while they’re sleeping, eating, crying, laughing, being silly, being jerkfaces… only stop taking pictures when its interfering with cuddle time. Even then, take a couple shots of the two of you cuddling.

Cut unnecessary people from your life before they have a chance to cut you from theirs. Because they will. People don’t know how to handle it when their friends are in situations like this, so the majority of them will just edge away without really even meaning to. So evaluate who you believe your friends really are, and go from there. You’re going to need strong people at your side. People who can be your strength even when you think you’re standing on your own. People who can take the storm.

They’re rare, but they do exist.

Find support groups. Find a good doctor. Find the courage to wake up every morning, so that you can treasure every second you have left with your child.

Love him/her like the next minute won’t come.  Never go to angry with your child. Always take the opportunity to be silly when you can.

I wear a bracelet that says “Live like she was dying”. It helps.

Single Parents:  You have the stresses of a working parent and a stay-at-home parent combined. You don’t have a significant other you can lean on to give you breaks. You don’t get to just be mom or dad to your kid. You have to be mom AND dad. You don’t have anyone to help you when the baby is sick, or when you’re sick.

I did the single parent thing for a little bit, and it was exhausting.

Single parents – you have my respect. You really do.  I wish you the best.

My advice: Refer to SAHP’s portion. I think it applies perfectly here too.  Also, and this really applies to every situation but: Make sure you have a good support system in place. Grandparents, aunts, uncles, good friends… anyone that is willing to help you out.

There’s definitely other situations that I could go into detail about, but those are the four biggest ones, I think.

In the end, what I’d want someone to take away from this is:

  1. There’s no shame in needing help.
  2. There’s no shame in asking for help.
  3. There’s no shame in using that help.
  4. Needing help doesn’t make you any less of an awesome parent.

Asking for Help (part 1) – draft. I will probably revise this several times. Input welcome!

I feel like I’ve kind of slacked on the education part of this blog lately, so this is going to be more oriented in that direction. It is also a subject that I feel gets swept under the rug a lot. After all, who wants to actually admit that they need help? And if you can admit it, who has the courage to seek it?

It takes courage to seek help. It really does. Because you have to lay out the fact that you are emotionally troubled before a medical professional and admit that you can’t do it on your own. That is one of the hardest things there is to do, I think. To admit that you are not perfect. To admit that you can’t do it on your own.

Well, if it makes it any easier, let me just spell it out for you..

You are not perfect. No one is. Do not hold yourself to an unattainable standard.

There are many reasons why you might need help, and I am a firm believer in the fact that at some point in their lives, everyone needs help. With that being said, this post is going to focus primarily on parents who need help.

Sometimes it’s just needing someone to talk to, and sometimes its medication.  There. I said the dreaded word. Medication! Medication. Medication. Medication.

One of the things that irks me (and I let them know about it) is when some of my friends say things like “I know I shouldn’t complain/be depressed about my life, after all, look at what you’re going through with your kids.” Or “I shouldn’t complain to YOU about stuff.”

…Just because I’m going through some pretty severe issues with my kids does not mean that your problems are any less important to you. Nor does it mean your problems are any less important to me (if you’re a good friend). You have every right to vent about the troubles that you are having. You can’t help the fact that you get depressed. You can’t help that you struggle with your emotions.

…and if you’re a good friend of mine, why shouldn’t you complain to me? Do you think I’m incapable of listening? Do you think that I’m only your friend so you can listen to me? No. Friendship is a two-way street, and I would not be a good friend if I could not take five minutes to listen to you when you needed me to. Period. We all have stress. We all have issues. We all need help at some point.

It is perfectly okay to say “My life sucks right now.” Because if you haven’t acknowledged that at some point in your life, then either you’ve lead the most perfect existence ever or… wow, can you tell me what you’re smoking and where I can get some of that?!

 

 

Specific Parent Situation Stressors

Stay-At-Home Mom/Dad /Parent(SAHM/SAHD/SAHP):  I can’t imagine the sheer stress involved in being a stay-at-home parent. I also know that for me, at least, stress leads to depression. I love my kids. I love my kids with all my heart. However, wow, I need a break from them. There are days when I look forward to going to work simply because my four-year-old and I need a bit of a break from each other. (Aka: Momma needs some grown-up time!) Being a parent is a 24-hour job. Workplaces are required to give you at least a few breaks if you work a certain amount of hours. Unfortunately, as a SAHP, you don’t necessarily get those breaks.  Even if the kid(s) is sleeping, its not like you can get out of the house and go have a drink with friends. No, you have to stay in the house because your significant other (if you have one) is probably at work, and you can’t leave kids by themselves.

There are some people who genuinely seem to love being a SAHP. I don’t understand it. When I talk to one of these rare individuals, who seem completely cool with all parts of it, I just want to tilt my head to the side, and go “eh?” Those are generally the people who have chosen to stay home because they could make that choice.

The majority of my friends that are SAHMs made the choice because it made the most sense financially. Babysitters are expensive! Some of them would be working just to pay for gas and the babysitter. So that choice wasn’t really even a choice. It was common sense.

Those are the ones I feel sorry for. Because (and as I say this I’m mentally waving an arm frantically over my head going “ME! ME ME ME!”) some people are just not meant to be SAHPs. I think most of us who are not meant to can admit that too.  My love for my children is a constant, unchanging thing. I like my children (specifically my 4 year old – lol) a lot more after an 8 hour break from them.

My advice:  The internet is a wonderful thing. Look to see if there are any SAHP groups in your area. There probably are. If not – maybe you could start one. Also, FB is an awesome way to communicate. Talk with people. I’m sure if you’re a SAHP, you probably know at least one other one on FB. People going through similar situations get it like no one else can. Talk about it when you’re stressed! Don’t underestimate the power of a feel-good song playing loud as you sing at the top of your lungs and dance around the house (with or without your kids).  Exercise! Take your kids out for walks! Play soccer with them. Get moving and get happy =) And you know what? If talking and laughing/dancing/singing /exercise don’t seem to help you…  You can (provided you have insurance) talk to a shrink and/or get medication.

There is no harm in shrinks or meds. There really isn’t. There are even medications that are safe for breastfeeding.

Your kids need you. In order to be there for your kids, you need to be healthy physically and mentally. Sometimes you need a bit of a boost to help stabilize your brain chemically. I can promise you it’s a lot safer to use a medication like Lexapro than it is to use alcohol or harder drugs. I did not say anything about the green leafy plant. You know the one I’m talking about. I am NOT getting into that debate. Nu-uh. No way. So don’t even start. I’m talking specifically about the other ones.

I don’t advocate going straight to meds, but I do advocate realizing that if you know you need them…then you need to get them. If you genuinely believe that the other methods you have tried to help ease your stress/depression, then ask for them.

Talk with your doctor.

NICU/CICU/PICU/ICU Parent:  Your child, whom you love more than anyone else (except maybe your other children, if you have them) is in Intensive Care. You know they’re sick. They’ve got issues that require Intensive Monitoring/Care from medical professionals. Otherwise they wouldn’t be in the ICU. Now what could possibly be stressful about that? (I hope you read the sarcasm there.)

It sucks. It SO fucking sucks. There’s just no two ways about it. You are guaranteed to be stressed to the max when this is going on. Then if the ICU stay turns into a long-term thing? I, at least, feel like bending over and kissing Sanity’s Ass goodbye some days.

I will say that I believe ‘expected’ ICU stays are easier to handle than the unexpected ones. What do I mean by an ‘expected’ stay? Well, if you have a preemie, then its almost guaranteed you’re going to be a NICU parent for a little while. Maybe even a couple months, depending on how early the baby was born.  However, in those cases, while your child does require intensive care/monitoring, it is not necessarily because they’re fighting off an illness. Its because they just need help finishing up the baking process on the outside since they couldn’t finish it up on the inside. There are lots of stressors that can arise from having a preemie baby, and the problems that can pop up with them, such as ROP. I am not trying to take it lightly, so please don’t read it like that.

Whereas, with an unexpected stay,  you might not have a clue if you’re ever even going to be able to bring your child home. That mere thought is enough to send your blood pressure skyrocketing.  Also, if the doctors aren’t easily able to pinpoint what is wrong with your child? You get the joy of waiting anxiously as they run test after test. You get the agony of looking at your child as they lay in a hospital bed, wondering if it was something you did. If there was something you could have done differently.

And what if the ICU stay leads to a major surgery, such as Open Heart Surgery?

I literally can’t even think of how to put how stressful that is into works.

But I know. If that can be any consolation to the ICU parent who might be reading this… I know. I’ve had 2 NICU babies now. I’ve had PICU and CICU stays with my eldest daughter. I’ve seen her through Open Heart Surgery. I fought to keep from collapsing at her bedside at the sight of her gray, paralyzed form with tubes coming out of her chest.  I was sure I was going to lose her.

That type of situation (ICU stays and major surgeries both) sucks in an indescribable way. And people who have not been through it WILL NOT get it. They just won’t. They might think they do. They might try… but they’re not going to.

I really think that in these situations, the best thing you can do is reach out to any support the hospital offers, such as a NICU psychiatrist. Reach out to the Social Worker. Ask if there is a parent support group. Go on the internet, look for support groups specific to the situation that you are in (Ie:  Have a child with Tetrology of Fallot).  And… not to be understated… is The Friend. The one that knows you well enough to know that you don’t necessarily need them to say anything. That you just need them to listen.  The one who can listen to you rant and rave about the unfairness of it all, and not offer the stupid clichés/ platitudes that do nothing more than piss you off.

The Friend is an invaluable resource.

Make time for yourself. I KNOW how hard that is. But you have to. You really do. You need to take a walk. You need to snuggle with your honey. You need to watch a movie. To laugh, to cry, to scream. You need time to do that.

Refer back to my previous statement about medication, also. You probably need a Happy Pill more than the average person right now.

Part 2 to come.

I figured this was getting a tad long.

http://www.friendshipcircle.org/blog/2013/03/13/15-reasons-why-its-hard-to-get-along-with-special-needs-parents/

Just. read. it.

(Side note: I had never actually truly intended to talk with this Dr. I just basically said I would to make the social worker happy because she was worried about me. But then there was That Day. That really, really bad day where  I ended up calling KbyK and telling her that she needed to stay on the phone with me. I was scared of how close to the edge I was. She did. She stayed on the phone with me for as long as I needed, and got me over that hump. Then yesterday, the Dr actually called me to see if I was still interested in meeting. I knew at that point that even if I wasn’t particularly interested in meeting her, I needed to. So I said yes and we met this morning.)

I talked with a psychiatrist/psychologist (Never can remember which one is the one that can’t prescribe Rx) today. I’m glad that I did. I have another appointment with her next week.

It is a service offered to NICU parents, and it is billed under the child so even if you don’t have insurance, but your baby does, you still have access to the doctor. Its a good thing. I think, especially for long-term NICU stays, its probably one of the best things they can offer.

Because I needed to talk. I needed to talk about everything to someone whose only job was to sit there and listen to me talk about what I needed to. She didn’t have anyone distracting her. We weren’t talking around a watercooler on break. Nothing like that. It was just me and her in a room by ourselves, talking.

She was a great listener.

I’m not going to go into details because its not necessary. Plus, unless you’ve been in the situation you really wouldn’t get it.

I’m under doctor’s orders for another round of alcohol, chocolate, bubblebath, and Walking Dead. I’m also to absolutely NOT think (as much as that’s possible) about G or L for 24 hours. I’m especially not to go visit G. I’m also supposed to take myself to Taco Bell and get my favorite noms, then veg out in peaceful bliss for at least a couple hours.

That, I can do! I think. Well, hopefully.

One of the more awesome things was that she’s a pumper, too. So she GOT it. We had quite a mini gripe-fest on how much pumping absolutely sucks. She also said that if it weren’t for the fact that I was backed into a corner with G needing b-milk because she can’t stand formula, that she’d highly recommend I quit pumping. That its just too much stress right now.

Just nice to hear someone acknowledge that. You know?

If my next meeting with her is anything like this meeting was, I think she’ll force me to reevaluate my opinion of head doctors. I’m actually looking forward to talking with her again.

When I was pregnant with L, I became friends with a great group of women. When L was having all her initial issues, they really supported me, and for that I will forever be grateful for them.

With that being said – I no longer talk to 90 percent of them. I own up to it. I took that step myself. Deleted the majority of them from my facebook page and from my phone. At the moment I have about 60 people total on my ‘friends list’.

And I know they wonder why. Just like I know that I can probably never really make them understand.  But I think that any other parents reading this, who have very sick kids, can understand.

I did it because I had to. I did it because every time I logged on or talked to them, I saw multiple posts of obviously healthy babies. I saw complaints about their kids having colds, or keeping them up all night. I saw gripes about colic and plans for the future. I saw it, and I was jealous. I saw it, and I felt rage.

Not rage or jealousy specifically directed towards them, but towards the world in general.

THEY got to make plans for the future. THEY had healthy babies. THEIR biggest concern at the moment was an earache or a cough. I don’t get to make plans for the future. I don’t have healthy babies. L will probably be dead when their kids are graduating high school.

And I can’t do that. The longer I was in that situation – of seeing SO many women who had it so good – the more depressed I became. The more my anger showed. Why did *I* have to have the so-sick baby? Couldn’t the problems have at least been distributed a little bit?

Yes, there were some babies who had some issues, but I think its safe to say that L by and far had it the worst.

…and now that I have G? Now, we know why I have sick kids. That doesn’t make it any better, though. It doesn’t make me stop wanting to scream and cry and shout and rage and WHY THE FUCK DID THIS HAPPEN TO MY FAMILY?! It just means that I have two sick kids. It means that whenever I hear about someone who is pregnant again, and I know that they’ll probably luck out and have another healthy baby… Its double the pain. Its double the rage.

I feel like the universe is giving me the finger.

So I distance myself. I cut myself off. I wish them the best. I genuinely hope that they all have wonderful full lives with their children. But I won’t. So I can’t – I refuse – to hurt myself even more by seeing hundreds of images and thoughts of ‘what could have been’.

What I deal with is what is, what was, and how am I going to handle it when the end approaches.

Yes, its selfishness, but its also self-preservation.

I’ve been messaged by a couple people offering to talk, and the only thing I can think is “How would you understand? How could you understand? You can’t, and I’m glad for that, but it doesn’t help me. You can’t help me. I wish you could. I really, really wish you could. But you can’t. So please, just don’t offer something that you can’t follow through with.”

Its kind of a case of “Its not you, its me. I love you, but I never want to see you again. ”

I wish I could make them understand. I wish I had the energy to try.

RELIGION

(Side note: Its taken me a couple days to write this post because I had to calm down before I could do it. I was that mad over a particular incident.)

Different people believe different things, and that is their right. However, people really need to learn to exercise basic common sense when they’re dealing with parents who have terminally ill and/or critically ill children.

Let me put this simply for those of you who might not understand: Take the parents’ lead. If the parents are not reaching out, expressing their faith, and the questions of faith that might arise when they have a situation like this, then you do NOT need to bring God into it.

Some people it might comfort. Others it might piss off. I’m in the ‘piss off’ category.  If you do feel the need to bring God into it, and you cannot keep your mouth shut, then at least listen to what the parent(s) are saying. If we’re saying stuff like “I never understood the disdain that atheists had for religious people until this very moment”… You can be fairly sure that its time to be quiet. Because all you are doing is causing hurt and/or anger.

But you know what’s even worse? When people acknowledge that they know they’re pissing you off and/or hurting you, and they KEEP DOING IT ANYWAYS! If you can acknowledge that you’re screwing with the emotions of someone who is already stressed to the limit, and you continue to do it anyways then you really need to stop and think about what you’re doing. You really need to think about it. Because, wow, while your talking about God and how that person’s children are super special in their own way, etc, etc, might have made YOU feel better? If it hurt the parent that you’re talking to, it doesn’t matter if it made you feel better. It doesn’t matter if you felt you had to say it.

You, my friend, are acting like a jackass.

Maybe you’re a well-meaning jackass. Hopefully it was just a temporary moment of jack-assery, but nonetheless. You’re acting like a jackass.

I went from having a decent, though stressful, day, to being so flipping angry and hurt that I wanted to put my fist through a wall. I genuinely like the person who put me this position, but after feeling like my obviously expressed thoughts were being blatantly disregarded so that this person could say what they needed to say… I don’t know if it’s a friendship I can maintain.

I don’t know if it’s a friendship I want to bother trying to maintain.

I’m going to give it some time, and see if I can talk to this person again someday. But I make no guarantees.

My relationship with God is my business. My rage and hurt towards him are something that He and I need to work out on our own, if we ever do.  I do not need my expressed fears about my children and any decisions I might have to make regarding them to be answered with consolations about God and a higher reason.

My kids are sick. ‘Higher reason’ can kiss my rear.