Thursday, March 26, 2009

Guilt part 1


“Happiness is good health and a bad memory.”
-Ingrid Bergman

“I really want those ladies who are freaks about breast feeding to jump in the lake! They never have anything to say to those women with special kids who can’t. Never have I once seen an article for us. What is the alternative then? Are you saying that because I didn’t breast feed my child has this disability? Do you not think I have enough guilt already? What if your milk never came in? Or what if your child couldn’t swallow? Or what if they were in the NICU under a tent? Gee whiz people – give it a rest! I have enough other things to feel guilt over.” ~Hannah

There is no greater guilt trip than the inevitable, “Did I do this to my child? What about that drunken night at New Years? Or those x-rays? I didn’t even know I was pregnant! Was it something I ate? Or the antibiotics I was on?” This litany could go on forever. And does it really matter? Will it change anything now, at this very moment? NO! And who says it wasn’t your partner? Or global warming, air pollution, petrochemicals in the ground water or sun flares? Or just a freaking fluke?

“You wouldn’t believe how bad I was to myself when I found out my child’s disease. It didn’t help that my in-law’s kept asking me questions about my family because it just couldn’t be their fault. So I searched and searched for a reason, desperate to find the cause, knowing it was just me already being a bad mom. How could I do this to my child? What would everyone think? Could I be trusted? The doctors told me I wasn’t to blame, but I didn’t believe them, they were just being nice.” ~Andrea

Shouldering all the blame, or looking for someone else to blame, gets you nowhere. Actually it gets you less than nowhere; it gets you into an endless cycle of negativity driven by guilt. Blame and guilt hurt you. They hurt your relationships. They hurt your child.

”One Saturday I was putting away the laundry when I heard my daughter talking in her room. She was playing with her Barbies and saying the most outrageous things! Then I figured out she was repeating me. ‘Sorry honey, I can’t play I have to make dinner.’ ‘Can’t right now, I’m too tired.’ ‘Can you please just put your shoes on without opening your mouth?’ ‘Hurry! I don’t care that your arm hurts, just get your coat on! We’re late!’ I knew I needed to seriously chill myself out. That’s not the gal I want to see in the mirror. I think that guilt actually worked in my favor. I dropped everything right then and vowed to make life simpler.” ~Kelly

Once you unpack from that guilt trip, here is the next rotten train waiting at the station: Taking time for me takes time away from my child. I’m going to tell you from personal experience that unless you start carving out time to yourself, you will lose your identity and have to fight harder and harder to get to your inner happy place again.

”I realized one day that I only had 17 minutes to myself a day, but spent 15 hours with zero energy and in a bad mood snapping at people. I’m an educated woman, yet I didn’t put the math together. My son has a feeding tube, among other issues, so I’m constantly watching him. This just didn’t leave me any time for myself. When I talked to my mom she made out that sacrifice is what mothers do and I should just be happy my son is alive. Well, duh! Of course I’m happy he’s alive! I’m not a cold hearted bitch. I stopped calling her. I was tired of hearing that I was to die so my son could live. Why couldn’t we both live? Why do we lay the guilt on each other? Who is it helping?” ~Amy

It’s not just your kid (or kids) who are vampiring-up your time; it’s all of your relationships. If you’re in a significant-other/marriage/dating relationship it takes time to nurture, and when you have special needs kids, you don’t have time to pee, let alone make another adult feel validated. “You never have time for me anymore” is a commonly heard phrase from spouses to guilt you into pampering them. And don’t forget work, school, doctors, housekeeping, cooking, etc…. So, when are you going to notch out some time for yourself?

Guilt, and how to stamp it out of your life, will be the topic of my next few blogs. If you can find a few minutes, get a piece of paper and draw a line vertically down the middle. Write down all the things you feel guilty about on the left. Then a few days later, start a list on the right of all the things you successfully do – this includes all the little things you take in stride and do automatically; like getting everyone’s teeth brushed before school, planning healthy meals, reading stories at night, remembering birthdays, keeping the Tooth Fairy alive….

Of all the things I used to worry myself sick over with guilt, I just enrolled my youngest in kindergarten, so I’m writing down that I’ve successfully parented her to that point….now just to calm the teachers about having a child with brittle bones in their classes.

Friday, March 20, 2009

Grief - part 3 final

This is the last installment of the topic of grief. I know I’ve taken an enormous about of time with this, but I feel it’s so vitally important to our lives as mothers of special needs children. If you try to build a life without the proper foundation it will crumble. My life is a good example. I was pretending all was fine and I was strong, I lived according to the rules (who’s rules I don’t know), I did the “should’s” and constantly worried I was doing enough.

Had I trusted myself and gave myself permission to grieve, I could have saved myself years of depression. So, here are the last steps in the grief process. Give yourself a gift and get through to the end.

Testing and Acceptance: Would it hurt if I …..?

Even in the pit of depressive despair, reality eventually starts to bite and you realize that you cannot stay in that deep, dark hole forever. You start looking for realistic things that you can do. These may be taken on as 'experiments' to see if doing these things help the situation in any way. As this project starts to work, at least in some ways, it is found to be preferred heck of a lot better than the depression and so you crawl out of that dark hole.

“I started by taking a shower and shaving my legs. I know that sounds stupid and easy, but it was hard for me to get up the umph to take care of myself. I then painted my toes. Each time I looked down, whether I was crying or not, I saw my red toes and thought they were pretty. It was a long road but each time I did a little more, felt a little better, and gained some confidence.” ~Linda

This stage is where the fun creeps back in. It’s one of stability, where you are ready and actively involved in moving on to the next phase of your life, no matter how short.

“It felt so good to smile. It seemed like forever before I did it. I feel now like I can do anything because I survived.” ~Hannah

This really is the exciting part because you will be searching for your “new normal”. Not comparing yourself to the cutesy mommies in the magazines, but making YOUR comfort zone. Your sleep and appetite should return (okay, okay, I’m still waiting for that one myself) and your daily activities won’t be so dramatic….well, dramatic in a sped house…..yeah, you got me on that one too. Point is, you’re out of the funk and life is upturning.

Growth: Hit me with your best shot!
I added this one because I think it’s important to also continue to grow, rather than just sit and spin your wheels in acceptance. This is where you shine and become an inspiration for other women and moms of special kids. These are the things I want to see from you:
o Renewed energy
o Reaching out to help others
o Finding of new emotional resources
o Smiling and laughing at your situation

You are never alone in your special needs journey, but you are the only one who can push yourself through these seven stages. How you cope with each stage is very individual. You may want to surround yourselves with friends and family or join a support group. You may decide to immediately make an appointment with a counselor (which I highly recommend) for one on one talking. Or you may be like me and try to re-gain some feel of control by cleaning….rote physical scrubbing frees my mind to think…alone in silence.

Each one of us needs to spend the time they need on each step. Some will breeze through one stage but stay in another for months. We are all different and it’s okay for you to devote the time and energy to properly earn the gold medal for conquering each stage. Re-read that again! It’s OKAY!! You owe it to yourself and your kids to do it right. And to do it again, if new grief creeps in as your situation changes.

Once you’ve mastered those seven layers, I’m here to tell you to indulge yourself. I don’t care what it is you do, as long as it’s mentally, emotionally, and physically freeing for you and not warping your kids. Fantasies of a bucket of margaritas, or a sexy stranger might have little downside, but taking a knife to certain people (you know what I’m saying), while tempting, would put you in jail and warp your kids. Indulge responsibly. Here’s my top 5 quick and easies I do at home when I think I’m going to crack:
1.Once the kids are in bed , I kick back with my favorite ice cream
2.Call/text/email my spectacular girlfriends who completely understand my rants, then kindly tell me I’m a freak, but they love me anyway
3.Watch The Daily Show and The Colbert Report
4.Sit on the potty and read magazines. Sometimes I actually have to pee, but usually it’s just a ruse to get a few minutes with the door closed.
5.After the kids are in bed I put the portable DVD player on a chair and watch movies while soaking in the tub…..multi-tasking pleasure! I’ve tried the ice cream in there too, but it doesn’t work well.

What do you do that is a help?
Until next week,
I wish for you many blessings!

Friday, March 13, 2009

Grief - part 2

Well, here it is, Friday the 13th. Some say a morbid and weird day. My birthday is tomorrow. So I’m doing a lot of thinking today about life (which can be morbid and happy), what I’m giving back for my blessings, what I need to clean up (and ditch), doctor appointments and paps that need to get done, and my goals of relaxation. How different my life is from the women who lived in the time of the Knights Templar who were slaughtered by the Pope on Friday, October 13th centuries ago. As women we have come so far, yet I feel we’ve hit a wall. We are stuck with our “should haves” and not living as who we are.

This is the second installment of the Grief chat. It really is essential to learn how you as a person deal with unexpected issues, where your strength comes from, and where you need support. This is part of living with who you are, and not about living how you think others demand that you live.

This is a fairly long blog, and the final installment will be next week. We’ve already covered shock and denial. Here’s what has happened to me and some of my friends with the middle stages of grief.

Anger: put away the scissors and knives
The next step after denial is a sudden swing into anger which often occurs in an explosion of emotion, where the bottled-up and hidden feelings of the previous stages are erupted in a huge outpouring. Whoever is in the way is likely to be blamed (spouses and mother-in-laws are good targets). The phrase 'Why me?' will be repeated in an endless loop in your head. Then there’s that tiny part that says back 'Why not you?' which just adds fuel to your anger at those who are not affected, or not as seriously so. You are judge and jury on your guilt.
“Internally I was swearing at everyone. I hated everyone. It’s not fair! People can abuse or neglect their healthy kids. Wicked people drive nice cars. I’m a good person, damn it! I don’t deserve this!” ~Sean
If you are seeing any of these anger signs, please know that it is normal and acceptable:
o Directed at spouse “If you had taken better care of yourself….”
o Directed at doctors or nurses “What the F do they know?”
o Directed at self “I hate me. I’m not good enough.”
o Directed at God/higher being “You are purposely causing suffering.”
o Urges to throw, hit, stomp, slam, or rip
o Lashing out by screaming and/or crying
But also know that if you are feeling the urges to physically react, you need to do it in a safe place to a non-living being. Pillows are fabulous to beat up on. You can even draw a face on the pillow case to concentrate your efforts.

Guilt and Bargaining: “I’ll never (blank) ever again if you can take this away”
After the fires of anger have been blow out, the next stage is a desperate round of bargaining. Bargaining is a vain expression of hope that the bad news is reversible. I gave up chocolate, promised to go to church, said I’d be nice to those who annoy me, vowed to never drink another amaretto sour again, and the list goes on. Since my kids still have their disabilities, I’ve “reconsidered” each of those promises I made.
You are trying to bargain because of guilt. You feel that you are at fault and can fix the problem. You’ll be heard and seen doing many of these:
o “I should have…..”
o “What if I had…..?”
o “If only…..”
o “I’ll do (blank) if you can fix my child….”
o Loss of appetite
o Rapid heart beat
o Extreme fatigue
o Heaviness in your chest, difficulty breathing
You know logically that you are not to blame as you wouldn’t knowingly hurt your child if you had the conscious choice. And, if someone hears you making the vow of depriving yourself of good things (chocolate, wine, shoes) in exchange for the reversal of your child’s diagnosis, then they may try to use it to guilt you later on….”I thought you gave that up. Isn’t your child more important?” (Remember that only stupid people who don’t have special needs children say you should just be thankful for what you have. It’s easy for them.) Guilt has a separate discussion we will explore in more depth as it is the bane of mom’s existence at times.

Sadness: I am alone and no one can help me.
After denial, anger and bargaining, the inevitability of the doctor’s news eventually sinks in and you reluctantly accept that your child has a disability. From the craziness of anger and bargaining, I slumped into a ditch of despair. In this deep depression, all I could see was a horrible end with nothing beyond it. But, in turning in towards yourself, you turn away from any solution and any help that others can give you and that is a mistake!
“Admitting you’re depressed is a sign of failure, weakness.” ~Jean
“I was scared to admit I was depressed. I was supposed to be happy my daughter even lived. I felt so dumb and hopeless. There was just so much I lost. I just had this constant anxiety that I was crazy and they’d take my kids away.” ~Jenny
You may express your depression in tears or even a number of passive behaviors, including long lunch breaks and mediocre work performance on the job (when that’s not your usual behavior). As with anger, if you are experiencing any of these feelings, know that you are okay, but seek out help from a therapist.
o Feelings of being abandoned, alone, and afraid
Hopelessness and depression
Endless crying
Little energy
Abuse of alcohol, cigarettes, or other drugs (mine was junk food)
Living in the past

I’m not kidding about the therapist. I’ve seen one for years because there is just too much in my life for me to handle 24/7 with complete composure and wisdom. Married women are the highest stat of depressed people on the planet. I can get so caught up in the details that I need a complete stranger (someone not connected to my situation) to see the big picture and give me some outside perspective. I don’t always agree with my counselor, but it’s good for me to articulate my feelings. My logic isn’t always taken in as I feel I gave it. But if I feel in my true gut and heart that what I did was right, I don’t apologize. I have hurt some people I love with my choices but a friend once gave me some advice that I think about often:
I’d rather be hated for who I am than loved for who I’m not.

You are not a failure if you are depressed. You are normal. Your expectations weren’t filled and you feel disappointed. Feel your feelings, know that they are okay, that I’ve been there and will always be here.

We have places to go and I need you strong and healthy. Take whatever time you need so you can enjoy the journey we are on.
Love and blessings,

Wednesday, March 4, 2009

Grief - part 1


“Forgiveness is the key to action and freedom.”
-Hannah Arendt

This post isn't meant to be a downer, but as a foundation for you as a place to start. You may not have felt you were going through any emotional stages when you found out about your child's disability, or you may still be in the midst of the torment. Feelings are not right or wrong and you can feel any and every emotion as much and as long as you need to.

I want you to grieve for the loss of the “perfect life” that you’ve been dreaming about since you were a kid.
I want you to grieve for the loss of a “normal” child.
I want you to grieve for the loss of your not being a “normal” parent. Cry yourself into exhaustion!
Why? Because you can learn from the torment that all parents of special children experience - you must feel the grief fully now or it will come back to haunt you later. After your grief is spent, you can then put those feelings in the trash and concentrate on your blessings, but you have to get through this first.
“I cried and cried and cried until there wasn’t anything left. I’d try to hide my crying but the swollen red eyes were a dead giveaway. I stopped eating and just couldn’t figure out how to see any happiness in the world. I should have been happy my child lived at all but all I could do was cry for the life she wouldn’t have. My whole body hurt for months and I started having panic attacks.” ~Deb
Grieving comes in many forms, but most people go through these seven stages: Shock, Denial, Anger, Guilt, Depression, Acceptance, and Growth. You can find the Elisabeth K├╝bler-Ross grief cycle at Though the research is about the death of a loved one, you too are going through the same feelings for death of hopes and expectations. The feelings are real and perfectly normal to have.
You may think that you’ve already passed through all of these stages when you first heard the doctor’s diagnosis. It’s true that can be the worst of the shocks, but new things crop up at every stage during your child’s development….an undiagnosed heart condition, a family member not being supportive, elementary school, assisted living, so you may revisit these stages and feelings again.
There aren’t “things to do” with each of these stages, you just have to feel them through. I’m sorry, but it’s imperative to your future, and that of your children, that you take each stage as it naturally comes. This is about knowledge as power.

This post is about the first two stages. I'll cover the following three next week, the remaining two after that.

Stage 1: Shock ”Is this really happening?”
The first reaction on hearing the bad news is one of classic shock. This initially may appear to everyone as if there is no reaction at all to the news. I had a buzzing in my ears. You may nod and accept the news without appearing to be troubled by it. Inside, you are frozen and the news really hasn’t taken hold yet. To get the news through, I had to be told several times.
This was followed by the more external signs of paling of the skin (hard to do when I rarely sport any kind of natural color), shortness of breath and physical freezing. I was classic textbook shock. I should have been in one of those cheesy films with the bucket of cold water being thrown on me and I come up sputtering. My friend, Jackie, told me she also had a loss of appetite because she felt numb and confused.
There really isn’t anything you can do about the shock but ride it out. This stage doesn’t last very long as Denial swarms in quick.

Denial: I don’t think so!
After the initial shock has worn off, the next stage is usually one of denial where you pretend that the news has not been given. You effectively close your eyes to any evidence and pretend that nothing has happened… my son does “la, la, la, I don’t hear you” with his fingers in his ears.
Typically, you will continue your life as if nothing has happened; pretending those three monkeys with their hands over their eyes, ears, and mouth are your friends. In the workplace, you will carry on doing your job even if that job is no longer required. You can file every paper in your office and leap tall buildings because your life is just fine thank you. If you are doing any of the three things below, you are paddling up “De-Nile” river right into the first big depot of Anger.
* No change in daily routine
* No preparations for future needs
* “Not my child!”

One thing you need to keep as your mantra is "perfection is not perfect". Perfection is simply the expectations that are unattainable.

If someone says they haven't grieved and life is rosy, they are a freaking liar or have a substance abuse problem. Let's just call it on the table. We're talking about the life of your child, and very directly your life as well. Next week we'll dive into the anger, and more, the suppressed anger; because for some stupid reason we special needs mothers are never supposed to get angry.

Well, let me clue you in.......I was pissed and it still flares up at how unjust the world can be.

Until next week, when we are getting angry again (HAHA), have peace in your heart. And if you can't, then keep yourself and kids safe.