Lauren Hill 1995-2015

“I encourage everyone to cherish every moment with no worry about the past or anxiety about the future. Because the next moment is never promised. Never leave anything unsaid. I have learned to see the blessings in every moment and through every struggle, no matter how tough it might be. Nothing holds me back from living my life and chasing my dreams. I always finish what I start and see it through to the end. Never give up on your dreams. Find something to fight for; I fight for others.”

No Child

I have tears streaming down my face and can barely see as I type but I have to take a minute to say this…
As someone who lives with a painful, incurable disease everyday, I can tell you it’s physically and emotionally exhausting. It’s all consuming sometimes. But I am an adult. When I think I can’t take anymore, when I’m dreading the next test or needle, I think of Gino. Then I suck it up and get it on with it.
Tonight, another family has lost a child to cancer. Her brave fight is over and she rests…at peace. As a parent this breaks me. This HAS to stop.
Without a doubt, everyone who reads this has lost a loved one to cancer or at the very least knows someone who has. Just stop and think of that fight. The appointments, the tests, the treatments, the pain…now imagine a child going through that…if you can even bear the THOUGHT imagine it’s your own child.
We all have diseases or causes that touch our lives for different reasons but childhood cancer, not one type, but ALL of them, is something we ALL need to stand up and fight about NOW. These are kids, babies even, fighting cancer. I implore you to get involved. Become aware. Demand pharmaceutical companies stop looking at bottom lines and turning away because it’s not profitable and look at the value of the lives lost, the potential of these children who have their whole lives ahead of them. Donate to Children’s Oncology Group Foundation who are tirelessly working towards a cure. If you go pink this month, for God’s sake GO GOLD the month before. September is Childhood Cancer Awareness Month. Ask a local business to go gold too. Commit to every year. DO SOMETHING. Stop these numbers from rising. Don’t wait until it’s your child.
ANY child with cancer deserves the world to stand behind them, NO, we should go before them. We should fight to the end that no child has to.

PCOS

I haven’t had a period in 4 months, I have gained 18lbs and for shits and giggles, I am growing a beard.  That’s right folks, step right up and see the bearded lady.

Ok, I’m not REALLY growing a beard, I just have more and more of those little, black, randomly scattered, old lady hairs and no matter how much I look or feel for them I always seem to find a new one in the car vanity mirror. Then I will turn to my husband or kids with all the psycho I can muster and say – “Why didn’t you tell me?!?”     Couldn’t possibly be this irrational response I have?

I had to go see “the lady doctor” today for my yearly session of awkward.  We talked about this rather extensively, BEFORE he was between my legs. So he turns to his nurse and say, “I need a blood draw, PCOS panel.”

The thing is, I’ve already had a PCOS panel and a diagnosis, but apperntly if you are having “problems”, gynecological problems to be clear, you have to have another. And another ultrasound. And if the ultrasound shows a thickening of my uterine lining, and knowing me it likely will, I get another biopsy. And if the biopsy is inconclusive again, another DnC. And then more waiting to find out if I’ve got the “C” word.  Well, FUCK THAT.

I’ve decided that if there is another problem with my stupid, wicked uterus that I’m just gonna have it yanked out. Really? I can’t think of one good reason not to. Ive had problems with everything connected to my vagina since my first period. Cyst after cyst. Endometriosis. PAIN. Procedure after procedure, surgery after surgery…for what? I’ve had kids and while I would have loved to have had another, I put that to bed after my miscarriage. I can’t handle having miscarriage after miscarriage and besides that with the mental health issues, it’s not in the cards. I’ve tried to convince myself that it would be better to have naturally produced hormones, but its not like they’re doing a good job and if weight gain were a hindrance to this decision, well…it can’t be much worse so, what else is there?

Aside from all that theres a very real possibility that I could develop cancer especially now that I’m not having my period. I believe it goes like this…missed periods, thickening of uterine wall lining, hyperplasia and then hyperplasis leads to abnormal cells, which leads to cancerous cells. In my mind if this missed period thing keeps happening it increases my chance at developing endometrial cancer so this becomes one of those decisions like whether to keep my breasts if I had one of those genes. I am not vain enough to even give that another thought. The boobs would go.
Already knowing that about myself makes this decision, if it comes to that, that much easier.

I hope you know

I’m sad but I’ve been told I shouldn’t be.

Your family tells me I shouldn’t be. That’s what they say.

My family tells me they understand because I once had a close relationship with you or they tell me I shouldn’t let it get to me because you were mean to me. I’ve never really cared much what people say.

Except for you…I did care what you said and it hurt…a lot.

More than anything I wanted to reconcile all of this and while I tried so hard to accomplish that while you were still here, I can never be sure how things were actually left between us. I hate that.

I believe that once you get to heaven all the details of everything that went on behind the scenes unbeknownst to you is revealed. You get to see how the great magician did it all I guess. I think you know the truth now and that had you known then what you do now, things would’ve been much different between us. The way we wanted them to be.

I hope you know that I greatly admired you and learned so much from you as a mother. You raised your brothers, your own children and were a lovely, doting grandmother.

I wish we could have celebrated with you. Not just today, but the days we missed and so desperately wanted to be included in.

We miss you. We love you.

I hope you know.

Cursed

Aside from the abdominal pain, well, more accurately, pelvic pain from whatever is going on in my special lady area, I also managed to hurt my back.

I got the general achyness/pain after attempting to go all gung-ho on cleaning out our rooms and organizing to boot. Then, I almost fell down the bottom flight of stairs, but was able to teeter and balance myself out all ninja like and hang onto the door handle.

I beginning to feel like I’m apart of that ‘Final Destination’ movie. Ill-fated … plagued … cursed.

Before I start to worry about being paranoid and my mental illness doing me in, I mean, don’t you sorta have to believe that when bad things continually happen, if you believe in being blessed when continued good things happen? Seems practical to me. Is that the voices talking? lol

Anyways, later in the day, Cleveland Clinic calls with my test results and they’re positive for anti-retinal antibodies and apparently what that means is I either have AR (autoimmune retinopathy) OR CAR (CANCER retinopathy)

Let us stop for a moment and appreciate this. Not only can I go blind and lose my mind, but I may have cancer as well? Hahahahaha. I couldn’t make this stuff up.

More bloodwork and testing …

 

Jedi Gino

I don’t even know how to begin to say what I have experienced over the last few days. It was a love beyond what the word love can fully capture. There should be another word for that. It was very intimate … and precious and heartbreaking and something I will never forget for as long as I live.

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Jedi’s best friend, Jedi Gino, left us today. His 10 year old body held a soul bigger than it could have possibly held, but it did. I’m sure the papers will say that our GIno lost his battle to cancer today, but I can tell you that’s not true. The cancer won the battle with Gino’s little boy body, but his soul won the war. The war that tried to take over his  and his family’s life, but it didn’t take his life. That boy was full of life. As I think of him now, that’s what strikes me still. The way he lived his life in the face of such a horrible disease. The treatments, the testing, the waiting, the way it ravaged his body. But Gino did not go quietly into a dark night. He left us surrounded by family and on a beautiful sunny day on a breeze.

My Jedi spent the last couple days at his friend’s side, playing with Star Wars actions figures. He would place a figure in Gino’s hand and direct it like a puppeteer with one hand, while using his other hand to animate his own. He would also tell him funny stories about Gino’s little sister being in love with him, or something that had happened at school, or even a private joke among themselves. He would place a Republic Guard action figure in his hand anytime he would need to leave. I could not think of anything more appropriate and it brought tears of complete pride to my eyes to watch. This was being a friend. This was fighting the battle the way Gino wanted to fight. Working around the limitations, but always working, always continuing to do exactly what they wanted to do.

When the hospice nurse leaned down to me and whispered that she thought my Jedi should say his goodbyes. I took Jedi onto my lap, on the floor right next to the bed and told him that it was time to say good-bye. He placed the guard back into his friend’s hand and then he leaned over and kissed him on the head, told him he loved him and told him that was ok for him to go. That he would always stick around and be there for his family. I kissed Gino’s head and told him how proud I was of him and how brave he was and that I would take care of Mom. I walked around the bed and hugged his father and kissed him on the check telling him that I loved him and then I embraced his mother as she sat in a chair, letting her go before we both broke into a sob.

The Jedi and I went into the next bedroom and sat on the bed, hugging in silence, but we didn’t cry. We had just witnessed a battle fought with valor and now that it was over, we were just in awe.  Then Jedi got up and walked over to the window. He said, “Look at the sky, Momma.” I walked over to see for myself that the clouds has feathered out right over the house. A beautiful parting of the heavens to welcome their brave Jedi Gino home. Then my Jedi smiled and said, “The angels are coming now. It’s time for Gino to go with Jesus, Momma.”  And with that he turned and walked out of the room and outside to where all of Gino’s cousins were playing. I sat down on a bench next to my husband and Gino’s Zito. I didn’t say a word. I really had none for what I had just experienced and I felt the need to protect it and hold onto it as long as I could in that moment.

A few minutes later the hospice nurse walked out onto the back porch and announced that Gino had in fact passed, probably just at the moment that my Jedi said he did.

I went to pull Jedi aside and tell him the news. It was the first time he cried. It was brief, but it contained all it needed to. He asked Gino’s Nonna if he could go see him one last time. We were allowed back into the room where my Jedi removed the guard from his friend’s hand and just held on. The hospice nurse was kind enough to offer him a canvas. She brushed paint onto both of their palms, Jedi decided that Gino’s should be red (his favorite color) and reaching down and Jedi’s blue (his favorite) reaching up. That was his idea and I have to tell you that as I sit here looking upon it, I see it exactly as he did.

They’ll always be connected, continuing to fight the dark side of cancer with The Force of love, but slightly out of reach.

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The Note

I’ve decided the best way to deal with this situation concerning my terminally-ill ex-mother-in-law is to just say what I feel and mean what I say, in the most simplistic of ways and let her take it from there.
Really, that’s all I can do.

W,

I don’t know how to start this note or where it might end I guess I just feel that God has put it on my heart to write for awhile now. I don’t think I could ever reconcile the truth of what we have lived in the past few years with what you have been told. I just think it has been terribly unfair to you and I but especially the kids. I just want you to know that we really care about you, immensely. We love you and if you ever want to stop by and talk or talk about nothing at all, the kids would like that, I would too, and the door is always open. Ball’s in your court.

Stephanie

Live and Let Die – Literally?

Ive been thinking a lot lately about somebody who hurt me quite deeply but who is also now terminally ill. The latter normally shouldn’t change the way I observe the debacle philosophically, except it does. Not really as it applies to me so much, but as it applies to my children.

I am not the type of person who has ever held a grudge. In fact, I used to be the person, who would do whatever it took to make peace with someone. I just never saw the point in these things. Some years ago though I had a number of incomprehensible arguments with  friends and family members that I absolutely  did nothing to provoke and it became obvious there was nothing I could do to repair. It hurt like crazy and it drove me mad. What did I do? What could I do? Why was this happening? Why would people do this to me? From that point on I just learned that sometimes it’s not about you and you just have to let people find their own way and let it be. (Love that song – Mental note) Eventually, they worked themselves out and all is well, but as I mentioned…this person is terminally ill so time is quite literally of the essence.

This person is my former mother-in-law. I used* to be really close to her and I used* to really respect her. These items are not past tense simply because she is my former mother-in-law. I have great relationships with my some of my former boyfriends and their parents. I’m just not a petty person. The issues here are a consequence of her not being able to decide things for herself based on information and beliefs she KNOWS is true (i.e. she has witnessed it with her own eyes) and enabling her son, my Ex, to the point that she has disabled him as a man. She loves him unconditionally and as a mother I get it, to an extent, but she doesn’t know how to establish consequences and boundaries and I imagine its been that way for him his whole life. This ended up having disastrous effects for me and my children. I accept responsibility for my own choices in this, that’s not what I’m saying. I was in the relationship with him, procreated with him. I get it. I don’t blame her for any of that.

What I do take issue with is this: There were times in our relationship when he literally was so out of control that he could have killed himself or someone else and when I went to her to help HER SON, she ENABLED him to be more of a moron and turn on me. Thankyou. Much appreciated.

There have been plenty of examples of this through the years but there’s two that stand out:

Example 1: The EX was in a downward spiral and was coming home drinking, Im talking to the point of alcohol poisoning drunk.  I had just had the Jedi, my Pickle had just come to live with us and had also just revealed that he was being molested. MIL records a taped message to me and my EX telling him about how I call her complaining (NOT complaining, crying my eyes out – scared, hello? – look at circumstances – help!, help!) about his drinking and making him sound like a drunk and he works everyday and she doesn’t think its a big deal for him to come home from work and catch a buzz. THANKS. That very night, with mother’s permission, he gets wasted. Then he proceeds to decide that he needs more beer and is going to drive, drunk, to go get some more. We argue about how he can’t do that. He tells me he’s going to do it. I can’t leave him with a newborn and 4 year old, drunk – duh. He pushes me down. I let him go. What do I do? Can’t stop him? Can’t call his Mom OBVIOUSLY. Can’t call the cops because then I’d really be seen as MEGABITCH. (Superplot to get him arrested, lose job so we can lose everything for fun! That’s me <— Supervillian. Insert severe eyeroll) No seriously, this is how his family thinks and they never look at him and go ‘Hey dummy – what the hell is your problem, you have kids – time to grow up!’ This is what I’m talking about. Anyways – He goes out in the garage. Starts car. Never opens door. Passes out behind wheel. ALL BAD. For all of us. If I just would have not cared and been asleep in bed, we could have all died.

Example 2: Last October on what would have been our anniversary, I got some really bizarre texts from  EX saying he missed us, loved us. I was sympathetic. I know he misses the kids. Anniversary is hard, easy to get nostalgic, but he doesn’t miss me. Then he tells me he made me a CD. Ignore, ignore, ignore. He skips next couple visits….I figure he’s drowning his sorrows. So when his next visitation date comes up, I send him couple texts to check on times, etc. Then as I’m heading home, I give him a call. He’s got an attitude right of the bat. When I ask “What’s wrong?” He starts screaming at me….I mean SCREAMING so loud that his voice cracks…that he hates me and I’ve ruined his life. I just sit there and he hangs up. He calls me back about 10 times in 5 mins, calling me a bitch, a cunt, etc, etc. Finally, when I get a word in edge wise I say to him, “I don’t know what your problem is, but you’re obviously having one helluva bad day, so have a bad day and we’ll see you this weekend. Just take a breather.” And he lost it. He showed up at my house before I got there. I was on the phone with my husband when he pulled in, he was being belligerent, my husband tells me to hang up and called the cops. Fiasco.
Two days later his Mom calls me. She asks if the kids are around and I immediately think something has happened to the EX. Then she starts in telling me that when two people get divorced that the number one priority is to keep normalcy for the kids and I have done absolutely NOTHING to do that for the kids. (Are you fucking kidding me? EX has had 1/2 dozen live-in girlfriends, residences and jobs. His visitations are never consistent. Cant count on him for anything. Ive even loaned him money, which I never got back) She starts yelling I don’t care what happens between you and EX it’s about the kids. OK, then – have you ever bothered to ask them about the stuff his visits with them or what he SAYS to them, maybe you should. So, I start to tell her she has absolutely no idea about how EX showed up at the house and was under the influence trying to pick up the kids and that Im not putting my kids in the car with a drunk. Then she starts yelling at me that I am the meanest, most selfish person she has ever known her entire life. (Even writing that now makes it seem even more preposterous). I inquired how she could even say that to me when here I am having taken on the full responsibility of raising my Pickle and I don’t see EX, or anyone in her family for that matter, stepping up, doing anything to help. She tells me thats my fall back – I always bring up Pickle and what I’ve done for him. (My fallback? WHAT?!?) I just couldn’t take it. I lost it. I told her that her family did nothing but enable him and I was sick of all them and maybe instead of having a restraining order against just EX I needed one for the whole lot of them.

Not only have we not shared a single word since this phone call last November she has not called my children, which  I think is ludicrous and THAT is what I take issue with. I’m all fine and dandy with her son making sides and her deciding to take one with her son after a divorce – whatever – but I can’t ever pretend to understand how you take a side that puts you in a position to not visit or telephone your grandchildren. Ever. Maybe thats why I never demanded such loyalty. I already knew.

Now, I know EX and I know that he is not truthful and he is self-serving and I can only imagine the things he has told her so, I know that these actions and words are mostly based on false information, but I think that there has to come a point in life when you can’t blindly, accept all the bullshit a grown man is feeding you further enabling him to continue to act in a horrible manner which hurts innocent children.

Now, she has sent the kids birthday cards and she has sent them a “care package”  here and there for St. Patty’s Day for example with green attire and such, pictures of more people in the ‘family’ who the kids never hear from and don’t even know their names. The kids called her and left her a message to say thankyou, she wouldn’t answer, didn’t return the call. I think that’s harsh.

When she was diagnosed as having terminal cancer EX called me and told me to take them to see her. Well, exactly how am I supposed to do that? Remember, I never said she couldn’t see them. They’ve left her messages telling her they want to see her, she doesn’t call them back. I can’t just show up at her house and given that EX has made everyone else in his family choose a side and think that I’m the enemy I can’t use any of them as a go-between. What the hell am I supposed to do? EX created this situation and now I have to muster up all the compassion in my heart to make it all better for her? And exactly how fair is it to give my kids all this information about their Nana dying with no way to process it?

I ended up sitting them down together and talking about the whole situation. They decided collectively that they wanted to send her a “care package” like she has sent them. They sent her a picture of the three of them and Jedi picked out a daily devotional and hand wrote inside “God is always with you” all by himself (he has such a good heart, makes me tear up – so proud of him). We weren’t even sure she had gotten it until a month ago when she wrote them a letter back and she mentioned having the picture next to her bed. That’s just not cool.

None of this has been fair to us. It hurts. So when I think about the lack of compassion my children and I have been shown from this woman, especially given the hell we’ve been put through at the hands of the EX, I think why should I care? Why should I burden myself or my children with her dying without closure on this issue? For all I know maybe she doesn’t even give a rat’s ass. But at the same time…I know she’s been deceived and so she is also being robbed unfairly of the her relationship with her grandchildren. But she also chose to act on that information without any consideration for them, without probing any further. I just can’t believe that she would ever believe such things about me. How could you look at a situation in which a woman takes on a special needs child as her own for anything but what it is? This is what I mean by her not being able to have an opinion of her own. Her opinions are always diluted by information she doesn’t mentally check out. I’m just thinking out loud here. Pondering. Bear with me.

I don’t want to regret not saying or doing something to remedy this situation, especially for the kids. I’m just not sure what that something is and I cannot forget the way she has made me or my children feel.

There are primary choices in life; to accept conditions as they exist, or accept the responsibility for changing them.”

More bullshit

I talked to Pickle’s counselor yesterday. She said my EX had called last week while she was on vacation. (I don’t think he’s ever called before) She said she had called him back today and just went over what she’s working on, what groups he’s in and she agreed to start calling him after his sessions to let him know how things went. On one hand, I’m glad he called – I want to be positive and think that he may actually be starting to take interest. But, on the other hand, I’m thinking that there is some ulterior motive. Pickle’s been seeing Michelle for well over a year. I mean, why call now? After thinking about this, I remembered the letter I had sent him about two weeks ago about some concerns I had. One of those concerns was the inappropriate video games the kids had been playing there.  He had called me and told me I was full of shit and that they hadn’t played it there. Then he asked when I became the person who got to decide what was appropriate for them and I had told him that I had actually shown it to Pickle’s counselor to see if I was being too…controlling or something and that she thought it was extremely inappropriate for him. Which only made me feel WORSE about the whole thing.

I asked her if he brought this up. She said he did bring up his concerns over Pickle playing Halo here.

First of all, all of this is stupid. (eyeroll) I actually consulted El Chupa before I let him play it because of this exact thing and he said it was fine.  I try to be considerate and I’m fairly good about the stuff I let the kids see/do and I know he knows that which makes it suck even more that he’s being so petty. To give you an idea of what I’m talking about….go check out Halo  (which has a violence filter and he’s not ever allowed to play it by himself or play in the online rooms which I imagine is the real reason for the mature rating) and then check out these games that not only Pickle played, but Jedi and Diva watched.

Jedi and Diva know the whole dialogue to this video, so just imagine how many times they’ve watched it. Sure, it’s humorous, in a very dark way, but for a 6 and 4 year old to watch?

I’m frustrated and I’m stressed. The process server called me yesterday and told me he was going to serve him. I’ve been stressed about this happening since I was told it would be done Friday and I’ve had the same migraine since then too. So, I ended up in the ER with the worst migraine I’ve had in a long time last night. I got my magic IV potion and ta-da! all better, but still really shitty to have a migraine for 5 damn days.

Things don’t need to be like this. That’s the most frustrating part.

In other news…. my Mom’s Dad has been diagnosed with Stage 4 prostate cancer. It’s a complicated situation as nobody in our family is really close with him. This is why one should always tend to their family, cause family, in the end, is all that will tend to you. My emotions are to volatile and complicated to further divulge but still, I’m sympathetic to my mother and his situation. My prayers are all I can offer I suppose. Just a very weird situation.

Also – my phone rang at 11:30 Tuesday night, a number on the caller ID I didn’t recognize, a voice I didn’t recognize either, a  blast from the past …. Matilda. Ah, just what I need. I have too big a heart to have hung up on her. I was close to her daughter, from the time she was a year old (she’s 11 now), her and Pickle grew up together, I got her through a rough pregnancy with her son when her then husband was enlisted. There’s a lot of history there. So, I mostly listened…to her apology, to her explanations, to the stories of the last year or so of her life, but I didn’t do much else than listen. I find it peculiar that she would call now. I question her intentions. I must admit, she is entertaining. But she is chaos and drama. Something I don’t have room in my life for right now. (sigh) I’m just leaving it at that right now.

Putting it to rest

My mind has been on a dozen journeys this week and some of it needs a resting place.

#1- THE EX.

As it turns out, no matter how far removed I am from him it seems he always finds a way to hurt me. That irritates the shit out of me. I mean for God’s sake, I’ve been with my husband for over 7 years, you think the EX could find a way to move on. And you know what it is? It’s that he has nothing. Nothing to move forward to, no vision, no hope and so I guess a man without future will return to his past. Fine. If he wanted to come to me and talk to me, I would have no problem with that. But, no. He has to talk about me and the stuff he says isn’t even true and he knows it’s not true. What is that?

Maybe it just bugs me that he doesn’t get me or to think that he never did and that he doesn’t care to. I really wish there was a resolution. Closure. But, it seems that for some people it’s just easier to be sure they are/were miserable than to try to be happy. I can’t change his opinion and why should I bother? He never cared and as he says, he never really loved me. It does what it’s supposed to. It hurts and that’s what he choose to leave me with and so that’s how it will be.

#2- DEATH

I found an old friend from high school on Myspace. Found out she had married her high school sweetheart, only to find that he had been battling brain cancer for the last 3 years. He had died Feb 5th at the tender age of 27. Just imagining being in her shoes, brought me to weeping in a moment of solitude in the shower. I just broke down and cried. How do you do that? How do you lose the love of you life, your soulmate, your best friend, the father of you child and still get up in the morning? I literally just feel an ache in my heart for her and it’s been weighing on my mind.

 

And I’m gonna stop here…because I have to.