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Night and Day

June 24, 2011 by 6 Comments

As I spent the week fretting over my son, my daughter was thriving without my assistance. And by “thriving” I mean taking the world by the balls and enjoying every minute.

Roll over!

New camp? No problem.
New friends? Easy.
Transition from the casual and unstructured days to total structure? Zero issues.

They are so different, my two kids. While they can play together without argument for hours on end and enjoy a lot of the same activities, they could not be more opposite socially and personality wise.

Take this family’s very first foray into the world of summer camp this week: my son had his bumps and adjustments-very typical for him regardless of how awesome the counselors or kids. My daughter had her counselor skipping back to the minivan with her, both grinning ear to ear and a handful of phone numbers in her hand for all her new friends for playdates.

And of course she was unable to stop talking 400 miles per hour for the entire drive home.

and then we did this game with these hula hoops

and then I played this other game with these other girls

and they all want to sit by me and be my friend

and then the counselor said she would be my partner so nobody fought over who could be mine

and then we got in the pool and I sang the motorboat song the loudest

and did you know we did these cheers too today?

Finally she takes a breath long enough for me to ask her brother how his day went, and I get a smile and a shrug.

it was good I had fun.

I catch his eye in the rear view mirror as his sister then launches, again, into every detail of her very social day and how popular she was and how great she did everything and how her entire day was larger than life filled with excitement and adventure and fun! fun! fun!

My son just shakes his heads and smiles.

Later, he confided in me that he thinks his sister has more fun than he does at everything.

Even when she had lunch there was something special mom.

He can’t put his finger on it, but he can feel it. They are like night and day.

But instead of it bothering him, or creating competition…he seems to gain strength from her. She might be younger, but even with something as simple as the kids going to a new summer camp, she seemed to lead the way.

I don’t worry about her like I worry about him, and it’s probably very unfair. My stomach lurches at the slightest issue with my son, but if anything pops up with our little girl I don’t hesitate to assume she’s fine.

She is fearless. Everything comes easy.

She doesn’t need my help.

Nothing showed this to me more than the events of this past week. The ease of which she transitioned to new situations. The ease making friends. The…just plain ease.

They say a Father will be tough on his sons and a Mother will coddle. I can’t argue this point. But what about how a Mother treats her daughters? I find myself tougher on my daughter. Expecting things I realize I don’t from my son.

It’s not fair. And I need to stop.

Where was my worry for her first week of camp? Where was my concern over making sure she dressed right and packed her bag right and had chapstick, just in case, or just the right fitting bathing suit…just in case.

No. With her I knew it didn’t matter, and I ignored the minor details I never would let slip with my son. Granted he has his quirks that do need attending to…but that’s no reason to simply ignore hers.

I’ve made her much more self sufficient. My own expectations of making sure this girl could take care of herself and be tough while dazzling a crowd with her charm…this is my doing.

I need to start concentrating some of that attitude into my son, who would prefer to stay in his comfort zone with Mom nearby.

Yes a lot of these traits are just their personalities, I do realize I have had a major hand in shaping them. I mean, of course I have…I’m their mother… it’s my job.

But when I see the stark differences in just this one little childhood experience, I realize I can do better. I can try harder, or…try to notice when I coddle one and not the other.

And in the meantime I will celebrate their differences and be thankful they are both good-natured and smart and strong…even if their Mom is a bit neurotic.

Filed Under: Count Waffles, Princess Peanut, Stepford Crazies

Camp WhoseACrazyMamma

June 22, 2011 by 13 Comments

My babies

I felt sick sending my kids to camp today. That pit of the stomach sick, gnawing and ripping at my heart as I wondered if this was the right time to give my children new challenges.

My children are used to a certain level of sheltering. A protection that can’t last forever, nor will it hold at all times for all things. With my sensitive son and his Tourette’s and OCD, and my daughter’s strength and wit and silliness, enrolling them in a non-traditional school was a no-brainer. My quirky family fits in well and our little oddities are welcomed with open arms.

Toss in my illness, and never-ending doctor’s visits, hospital stays, and treatments which cause stress on them both, and their social interaction ends up more limited than I would like. But it’s hard to host playdates when I’m hooked to an iv and I hate relying too much on the kindness of other parents as they offer to shuttle my kids back and forth from their homes and nearby parks.

All of this adds to the social awkwardness that gives our family an extra dose of that quirk we’ve carved into our community where we have no need to acknowledge or hide.

And then came summer camp. A wonderful opportunity presented to us with swimming and archery and drama and crafts and everything you’d expect, except it is outside of our hometown and very traditional. Things I never really gave a thought to when excitedly signing them up, until my son came home after his first day relaying a story to me about how he was called names and made fun of.

My heart sank, my gut hurt, and I realized I had not prepared them for ‘traditional’ camps or schools. For what passes these days as ‘normal’ out there in the world. We had so carefully carved out a community that fits us, fits them, that I feel I have failed in showing them the ‘other’ side of things and trotted them off to camp where we’re the only minivan in the valet line and very probably one of the only families attending a casual, progressive, and accommodating non-traditional school.

I felt like I threw them to the wolves.

Of course my son was steadfast and strong and brave. He had stood up for himself to the boys, and he had told his counselor. He even made other friends within his group so as to avoid the kids who immediately labeled him as different. But he was also hesitant to return. After talking to me he felt better about giving it another try, and left this morning happy and somewhat excited to attend.

My husband had a talk with his counselor, and we have no doubt the camp will keep an eye out, but the bigger issue was my failure as a parent to see this coming. I should have known better. I should have realized I couldn’t just plunk my kids into that atmosphere and expect them to conform and blend.

I’m proud that my kids are unique. That they are quirky and odd and brilliant and creative with hearts of gold. And I know I can’t shelter them forever from cruel comments and bullies and jerks and all the things that go bump in the night.

There was a large part of me that wanted to immediately yank my kids from camp and keep them with me all summer, and a small part that knew sending them back this morning was the right thing. Letting them learn, supervised, that sometimes people are assholes but those assholes shouldn’t ruin your good time. I would never let it get to the point where my child was sick over attending or anything more than typical kids being kids…but that didn’t make hearing what went on any easier. And this was just very tame kid social circle stuff.

I am, however, thankful my son knew enough to handle his own issues at camp and then talk with me about it all. He wasn’t afraid to confide in me, talk to his counselor, or go back and have fun. Clearly he’s taking it all much better than his mother.

And of course it didn’t stop me from telling him I would stand at the ready to string-up anyone who dared mess with my kids. My plan is to let meanies dangle from the camp flagpole by their underwear, which elicited many giggles and astonished looks from my children, shocked Mom would say (or do) such a thing.

But then we talked about how that would make ME the bully, and tactics they can use to fend off any kids at camp who seem to want to cause trouble.

There are so many things we want for our children. We all want them to get a good education, learn right from wrong, become good people, etc. etc. etc. But there is so much more we don’t want for them. I don’t want them to feel heart-break, or to be picked on. I don’t want them to dread school or a certain clique of classmates, or even new experiences like summer camp in another town. But all of those things means never falling in love, never finding new friends, and never venturing outside our comfort zones.

Which is why I dutifully packed up lunches and swimsuits and towels and sunscreen this morning and sent the kids off to camp. Everything in me wanted to just forget it, and keep them home. Because it was safer. Because it was easier. Because we have all just had enough lately. But I sucked it up, hid my tears, and watched them go.

They deserve to have fun, they deserve to find new friends, and they deserve a normal childhood with all its trappings and rewards.

And I can only hope I won’t fail them again.

Filed Under: Count Waffles, Feeling YaYa, Princess Peanut, Stepford Crazies, tic-toc

Squinting Hard for Light

June 20, 2011 by 25 Comments

All my grand plans for Father’s Day were ruined by Lupus.

In fact, most of my plans as of late have been ruined by Lupus.

Everyone keeps telling me it’s not my fault. Everyone keeps telling me to stop stressing out over things I can’t control. But what ‘everyone’ does not understand is that regardless of fault and stress, I still have to handle it all. I still have to live this life that is currently shit.

I have to explain to my husband that he’ll need to be alone with the kids for the rest of Father’s Day because I need to go to the hospital. I need to worry, with an IV in my arm, if the right sunblock will be packed for camp. If I plugged in the iPad and DSi for the ride so the kids have something to do on the way. If they will be upset when they wake up and I’m not there. If everyone is starting to resent the burden they carry because I can’t ‘get it done.’

The rides back and forth to treatment for 14 days. The constant pharmacy pick ups. The constant lack of help around the house. The constant worry when morning comes and no one yet knows if it will be a ‘good’ day or a ‘bad’ day.

My family deserves so much better. My kids deserve a mother that can scooter down the street with them, my husband deserves a wife that can go on a date night. They do not deserve this.

Last night, as I laid in yet another hospital bed, I cried harder than I have cried in a while. I didn’t cry for myself. I cried for them. I want them to have a better life. I want them to have an easier life. Where no one worries about medicines and treatments and lab results or if Mommy will make it to the end of dinner before needing to leave for a doctor’s help.

I keep telling myself it’s getting better. It WILL get better. And time and time again I am disappointed in my body. Part of me wishes it would just give out already so everyone can get on with their lives and be happy. Be normal.

Part of me wants to just vow to suffer in silence and do everything a normal wife and mother would do, to hell with the consequences.

Part of me wants to demand better care, better drugs, better treatments and to never be silent when I am uncomfortable and to continue to fight as fiercely as I can.

But most of me is just exhausted and upset.

Today my doctor told me my treatments appear to be working. It is a bit early to tell, but we are headed down the right path and those once scary lab results are looking much better. But we still have a long way to go, with additional twists and turns including my growing tolerance and addiction to pain medication.

Nothing has come easy with this disorder. Nothing.

I’m not sure what’s left to relinquish, or from where I will find the strength to keep down this path…even as it appears to be leading to the light at the end of the tunnel. I have lost so, so much and I’m starting to lose faith that I can do this. I want so much better for my kids and my husband. I love them so very much that it hurts me more to see them go through this than to have a million veins collapse, a millions mornings of pain, a million more treatments and a million more tests.

I want my body back. I want my life back. I want my husband to have a normal looking wife, I want my kids to have a Mom who can be present in their lives, not fighting for her own.

Tonight I’m ripping off the bandages and tape and ekg circles so there is no evidence left of this last hospital stay. I want my husband to walk through the doors from work and at least not be reminded. I want to tuck the kids in bed without them worrying where they can or can’t touch me for fear of causing pain. I want them all to treat me like nothing is wrong, even if we all know it’s not true.

I struggle so hard to make life as normal as possible for them, that I think maybe if I can fake it, they will treat me normally in return. Of course, nothing is normal. We all can’t just pretend forever…

…but maybe, just maybe,  if we pretend hard enough and long enough, we’ll get to end of that tunnel and no one will need to fake it any longer.

The only other option is to give up. Which is not an option, no matter how horrible the day or how awful the guilt.

I don’t wish Lupus on my worst enemy.

Filed Under: #SUCKITLupus

Unstoppable

June 17, 2011 by 34 Comments

This is what Lupus treatment does to your body.

Warning: graphic photos

Both of my inner arms look like this- and it stretches across my chest and onto my breasts:

BOTH underarms look this way

These are my inner thighs and legs. I don’t think I need to say much more:

yup, these are my inner thighs

You can also find these patterns across my sides, my back, my ass.

Treatment that is protecting my organs has made it hard to get in a bathingsuit and face the world. The rapid, steroid, weight gain. The horrible marks. The bruises.

In public!

Never let it be said I’m stoppable.

Filed Under: #SUCKITLupus

Before I Wake…

June 15, 2011 by 15 Comments

Alright, so it’s been 10 days since I’ve posted…but to be fair, it’s hard to blog with an iv in your hand and immune globulin getting pumped into your body.

Bottle two of five!

I won’t lie, it has sucked. Hours upon hours sitting in a recliner in my doctor’s office, day after day, hooked to an iv and hoping beyond hope this works.

I was supposed to wake up feeling better today, but instead woke up feeling worse. I was ordered to come back Monday for an extra day of treatment, a re-calculation due to my rapid, steroid-induced, weight gain. Now, we are told, I should wake up tomorrow feeling improved.

Here’s to a new dawn. I will go to bed tonight wishing and willing it to be true.

Filed Under: #SUCKITLupus

Hold the Bugs

June 5, 2011 by 10 Comments

A long time ago, in what seems like another life, my husband and I would sit in front of the tv on a Friday night and he’d spend what felt like hours brushing my long hair.

Sometimes I would ask for the luxurious pampering. Other times he would grab the brush, sit down, and pat the couch between his legs and motion for me to come over and be spoiled.

Of course this was before kids. Before our Friday nights were spent falling into bed with exhaustion.

…and before my weekend was spent not with a pampering hair brush, but with a necessary lice comb.

Yes, my shaved-headed husband (the lucky bastard) just spent a good part of Sunday combing through my hair, not with the doting goal of relaxation, but hunting for bugs.

We have spent the entire school year ducking the insects as note after note came home from each of our children’s classes proclaiming yet another infestation. Then, as we enter the very last week of the school year, the kids started scratching their heads. Of course.

500 loads of laundry and several shampoo’s later, we’re attempting to pick up the pieces of a shatter home taken down by tiny bugs. The kids are tired of me picking at their heads and my husband is tired of waiting for the sanitize cycle on the washer to finish. You would think after decades of parents having to rid their elementary school age’s children of lice, there would be a better way. But…no.

Needless to say it’s been a long weekend. As you can imagine, our already stressed out house really didn’t need this. However, as I sat on the couch, my husband picking through my hair and my scalp feeling tickled…I couldn’t help but think of those weekends of long ago. Sure the brush is now a comb and the goal isn’t exactly to pamper me, but in a weird way I enjoyed it just the same. Although next time…hold the bugs.

Filed Under: Stepford Crazies

I Vant To Suck Your Blood

June 1, 2011 by 23 Comments

Every three weeks for the rest of my life I’m going to sit down in a recliner for three days in a row and have good blood pumped into my sick body.

It’s called IVIG and it’s going to help me live a normal life. That’s the plan anyway.

With recent tornadoes and tragedies, not to mention every day accidents like car crashes…it got me to thinking just how important blood donations can be. You see, that IVIG stuff up there is pretty much good blood. Good plasma. Good immunoglobulin so I can take my kids to school, plant flowers in my garden, cook dinner, and kiss my husband. It means I can fight with conservatives and write blog posts and take my kids to the park.

My butterfly gnome in my jasmine

But I have to count on other people in order to get the treatment I need. I need good healthy people like you to donate blood. Donate plasma. Donate the healthy red stuff you have flowing through you that I lack.

I know many of you have been asking how you can help. This is an easy way to help me and millions of others who may need blood.

I even made it easy for you. Click here to find out where you can donate near you and look… you can even make an appointment!

Thank you.

Filed Under: #SUCKITLupus