Tattoos and Tulips

So I have been wanting another tattoo for some time now and have finally decided to bite the bullet and get one. I actually have two planned out, both with very significant meanings to me. The first is a symbol that both my man and I are going to get done between our shoulder blades. He has practiced Judo for 25 years and has an extreme respect for the Japanese culture, so we have decided to have the Japanese symbol for 'eternity' permanently inked into our skin to show our commitment to each other. Maybe it's as crazy as the guy who gets "Donna" tattooed on his bicep and then has to live with it day in day out after they break up, but I don't think so. I truly believe with all my soul that I will be with my man for eternity. Sounds cheesy, I know, but it's honestly how I feel.

My second tattoo has a much different meaning. I am sure everyone can relate to the eternity symbol, nearly everyone has been in love. This second tattoo will symbolize something that nobody else can possibly ever imagine or understand, unless, like me, they are living it.

When 3rd baby M was born (at home, accidentally...but that's a whole other blog entry) and after we were rushed to the hospital, my doctor came in, sat down beside my bed and held my hand. I remember the look in his eyes, as if he was terrified to speak. He began to tell me that they suspected that baby M had Down syndrome. I remember looking down at this perfect little being in my arms who was looking up at me with squinty, swollen eyes and thinking there was no way. They were wrong. They absolutely had to be wrong. I recall asking how this could have happened and all I remember hearing were the words "chromosomal abnormality" and "freak of nature". I know in my heart now that my doctor was at a loss as to how to explain it to me from a medical standpoint, but that's all I took out of the 15 minute conversation. My womb was abnormal and my baby was a freak of nature.

In the days following his dramatic entrance to the world, I was in a fog. I merely existed day to day, having no clue what I was doing. Baby M was in an incubator on oxygen and was tube fed and I was helpess. I would even go as far as to say I felt completely useless as a Mother. I developed mastitis but refused to stop pumping, after all feeding him was really the only thing I could do properly at that point. I'm not sure how many days it had been since his birth, but I was sitting in the pump room one afternoon, hooked up like a Jersey cow, bawling my eyes out. I'm not sure what hurt more, the physical pain from the mastitis or the emotional heartbreak I was feeling, it hurt me right to my very core. There was a gentle knock at the door and the lactation consultant came in and sat down next to me. It was one of those moments were there was nothing but intense, raw emotion. This woman, Jean, whom I had only met a few times for a couple minutes each time, held me while I cried. I layed my head on her shoulder and cried like I had never cried before. She said nothing until I had stopped. Then she reached into her bag and pulled out a sheet of paper. A beautiful, colorful stationary with tulips on it. Printed on this beautiful tulip paper was a poem and I would like to share it.


Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


For me, landing in Holland is definitely not what I had planned. I have shed many a tear over the fact that my trip to Italy was permanently cancelled. I have become a person I never thought I would have to be, a person I never wanted to become. I have met people I never wanted to meet. My entire world came crashing down on June 4th, 2003 and even though it's been rebuilt, it will never be the same again. Somehow, I have adapted and grown to love this person I have become. Before I could never have imagined my life with a son with Down syndrome and now I can't imagine life without him. He is my special boy and I love him to bits.

Interestingly, tulips have always been my favorite flower, even as a kid. As an adult my gardens were always full of tulips in the spring and I often bought myself tulips for inside the house once mine were dead and gone for another year. So I am getting a tattoo of a single tulip to forever mark my trip to Holland. It's beautiful here.

Profanity Philled Rant about Draco (spelling mistake intended)

So this afternoon I am hanging out with my man and the phone rings....it's the ex's cell number on my Caller ID. Those of you that know me will know that this event only takes place in cases of extreme emergency. He doesn't speak to me, ever, we only communicate via email. Pretty effing twisted since we see each other 10 times a week for pick-ups/drop-offs. So I answer and he's telling me he is at the courthouse for our hearing and where am I? WHAT?!?! This is MY hearing, MY day in court that I have been patiently waiting for for MONTHS now. I flipped my lid on him, so he put his lawyer (let's call him BS, short for Big Shot..or whatever :P) on the phone and I tore the guy a new one. How in the HELL was I not served with notice of this hearing, MY hearing? I ended up hanging up on BS and hopping in my car. I drove like a maniac (thank God for radar detectors) to the courthouse and as I was approaching, I see EX and BS outside, waiting for me. I peeled into the first spot I saw, parking half on the curb and hauled ass up the courthouse steps. BS greets me with a "Good Afternoon, Miss (insert last name)" to which I snorted "go to hell" and slammed my way through the doors like the classy broad that I am.

I walk into the conference room and there are signs on the table for Defendant and Applicant. At the Defendant side of the table, there is a barely any elbow room due to the well organized stacks of papers and manila folders. On my side, there is a jug of water and a glass. Empty and bare. My folder is at home, chock full of well organized notes to follow and point form arguments to make. It's at this moment it hits me - I have nothing but me.

The Judge walks in and I apologize for being unprepared and express my extreme upset about not being notified of the hearing date. She completely understands and although it appears that it was an error made by the court registry, BS's office also should have notified me and didn't. I would be willing to bet my left tit (and it was 'spency LOL) that this was a tactic. Somehow, some way, this was done to make ME look like an ass. Job well done, boys.

After asking a few routine questions, the Judge allowed me to say a few words. I think I did a pretty decent job getting my point across as to why we were there. I explained that the current schedule is hectic (back and forth ten times a week, yes TEN) and that with the majority of my time with my son being daytime, I am unable to persue the option of going back to work full time because I would never see him. To add insult to injury I would then be 100% financially responsible for daycare costs because it would fall into "my" time. When it came time for BS to explain why they were so opposed to my application, he goes on this big rant about my "disabled down syndrome kid" (yes, that's a direct quote) and how any change to the schedule may be traumatic for him. GIVE ME A FUCKING BREAK. I literally wanted to leap over the giant round table and strangle the life out of this ignorant piece of crap. The fact that M has Ds has NOTHING to do with this situation!!!! Is that the best he's got? Is EX really ok with his lawyer playing the Down Syndrome Card in court? Could I have honestly procreated with such a fucking asshole? Apparently so, because he sat there, all smug, leering at me from across the table. I guess I really don't even know him any more, who the hell is this Phil guy anyways?

Anyways, before I go off on a tangent about the remainder of the conference, it ended with the Judge saying that since the application is so vehemently opposed, this must go to trial. Guess how long of a wait it is for a trial? 6-8 months. SIX TO EIGHT MONTHS before this can be resolved. And of course, no guarantees that I will win. Things could very well remain as is and if I choose to work full-time, it will mean seeing my son ONE evening a week. What the FUCK.

Needless to say, I am beyond upset. I have never hated anyone as much as I hate EX right now. I loathe him and that's not nearly an intense enough word. I envision myself opening the door the next time he comes here (tomorrow at 5pm) and throwing him off the porch, right on his fat ass for all the neighbors to see. I imagine walking into his place of work and just plowing him, square in his smirky fucking face. You're probably wondering how I can be so cruel, right? If only you knew what this bastard has put me through since I left his sorry ass 3 years ago. It has been month after month of hell, with me always conceding and giving in to his ridiculous demands because I can't deal with it any more. Throughout the separation, my lawyer called him Draconian, in fact she even printed it in a letter about him, which I will save for years to come. I just might start calling him that to his face. Thousands of dollars wasted on said lawyer (which is the reason I don't have one this time around) for what? I walked away with nothing and every time I turn around, I'm bending over to take it up the ass all over again.

I am an absolute mess right now, my eyelids are swollen, my right leg won't stop shaking and I have that stupid hiccup thing that happens when you cry too hard.


This sucks.


edited to add: I came out of the courthouse to find a parking ticket on my windshield. Fuck me.

A Tale Of Two Lines

So last night at about 10pm, I decided I was pregnant.

I am late, but my cycle has been whacked for months, from stress I am sure. But my boobs are so sore. Like big, heavy, sore watermelons hanging off me. Ok maybe cantaloupes, but whatever. They're sore. So anyways, I call my man at work and ask him to bring home a HPT. He knows the drill, we have done this LOTS. He gets home an hour later and he has the test in the package, but not in the box. I guess he took it out and threw it away after he paid for it because he didn't want any of his gossip loving staff to see the box through the plastic bag. Good idea, except that the test he bought wasn't the one I usually take. So, I peed on the stick and then waited.....

Two lines. Two lines. TWO F*CKING LINES. No, no, NO! This is not happening to me, not right now. I had a meltdown. A sobbing, ready to jump off the nearest bridge, raving lunatic needing medication, m-e-l-t-d-o-w-n.

As it turns out, the test was one of those ones that turns to a + sign if you are pregnant, so I mistook my | as the "2nd" line, when in fact it was a - meaning negative as in not pregnant. Now there's a sick cruel joke to play on someone. Perhaps ONE day I will laugh about this, but definitely not today.

Anyways, this really got me thinking. Why was I so upset? The idea of another baby doesn't scare me, on the surface of it. It's what comes with pregnancy that terrifies me. My track record is horrible, having had more losses than babies, ranging from 8 weeks along to 20 weeks. To add insult to injury, half the time my body doesn't realize it's not pregnant anymore and I have to have a D&C. My pregnancies have been far from "normal" - my doctor actually laughs about it. Not in a mean way, but in a shaking her head, baffled kind of way.

My 3rd baby M was born with Down syndrome. Please don't get me wrong, he is the love of my life....but that's not what I signed up for. Nobody wants that. My entire world has changed, I have been forced to become this whole other person I never intended or knew how to be. Does it scare me that I might have another baby with Ds? Honestly, not really. That doesn't mean that I don't feel an immense amount of guilt that my body did that to me. I know it wasn't anything I did. I know it wasn't anything that could be prevented. I know that it happened at the moment of conception. I know all of these things, but it doesn't take away the fact that I feel like my womb is a failure. I can't explain it, it's just how I feel. I could write an entire novel about my experience of having a baby with Ds, so I'll leave it at that.

My 4th baby M pregnancy was a roller coaster ride. I was diagnosed with Cholestasis, a rare (of course it's rare, this is me we are talking about) but serious liver condition that can cause stillbirth, especially if the pregnancy goes further than 36 weeks. I existed day to day, wondering if my baby was going to die inside of me. How does a person deliver a baby they know is dead? I lived in fear for months and drove myself crazy if the baby didn't move. The poor boy was poked and prodded and jiggled around several times a day, just to be sure. I battled with my doctor as to when we would deliver. She felt it was safe to wait until 38 weeks as long as we monitored carefully, I completely disagreed. After weeks of harrassing talking to her about it and printing off every statistic and medical article on the net, she caved agreed to induce at 36 weeks. Of course the induction(s) resulted in nothing more than 4 days of mild labor and no progress and ended in a c-section. The likelihood of me having Cholestasis with subsequent pregnancies is as high as 90%.

It always strikes me as strange that my first 2 baby M's were pretty much textbook pregnancies. They were also completely unplanned pregnancies when I was 14 and 19, with the same loser guy (apparently I never learned my lesson the 1st time). 3rd and 4th M's were planned, oh how they were planned. Temping, charting, timed. Very planned. Mother Nature sure can be a b!tch, eh?

So I'm scared. I'm not the kind of person who is scared of anything. Not heights, not spiders, snakes, death. Nothing like that. Just pregnancy, it terrifies me right to my core. And yet, I just don't feel like I am "done" having babies. I want one more, just not right now, not right this minute. Not that the fear will change months or years down the road. Will I be more mentally prepared? Probably not. So I don't know what the f*ck I am doing, whether I am coming or going. I am waiting to hear about a possible job opportunity and that will probably be the deciding factor for me, or maybe not. The waiting is exruciating though, I just want the god damn phone to ring already so I can get on with my life, whichever path it may be taking. I will truly, honestly be fine with either path. They will each be rewarding (yet frightening) in their own way. But I would like to be able to make a decision. Knowing what I am facing will help. Maybe I do have another fear, fear of the unknown. I need to be in control of something right now. A career and a life with the babies I have or a life with babies and then a career.

Two paths to choose from. One line or two lines? I just don't know.