No sir….I didn’t Like It.

As the clock gets closer to quitting time for me at CA, I can feel the stress bubble up from my chest and spill over into the various muscle groups in my body. Will I get home at a reasonable hour? If I am late will it be used against me? Will any mistake I make tonight be used against me? Should I grill the chicken or let it marinate one more day and take a gamble on salmonella? Maybe a walk with the girls will help me with this nervous energy. Or maybe I just need to turn everything over since I am doing such a fabulous job managing my life thus far?

This has been one hell of a week and it’s only Tuesday. I need to get off this worstmotherintheworld trip. There are worse people out there than me and I, for one, am done with all of this. What is the next step? How can we move forward because I am not moving back. Ever. I have made my bed and am prepared to lie in it so let me.

I am angry that once again I am being held over a barrel, and someone else is in control of my life. I feel chained. I feel like I can’t take full, deep breaths. And I am sick of it. I feel like I am the bird beating herself against the cage as she frantically searches for a way out. I want to be a good mother to my girls. I want to be happy. I know there is happiness out there. I can see it through the bars.

I will never understand how men can get multiple divorces and no one says anything to them but if a woman does it all hell breaks loose. It’s not important. I think the most important priority for me is my girls. Taking care of my girls and being there for them. Which is hard to do when you never know what the schedule is or when the rules will change. I will say this much: regardless of the date on the calendar, I will ALWAYS be available and ready for my girls whenever they NEED ME. That is what a good mother does in addition to other things. 

This morning Izzie wasn’t herself and threw up a little after being a tad sluggish. After I was informed of this I responded with a “I hope no one gets sick” text and then instantly regretted it. I am now second guessing everything I say. It is an awful feeling to think that every word, every message you write is scrutinized to be used as possible ammunition. What I meant was, I hope they aren’t sick because I will miss them since it is better for them to be home if they are. I hope they aren’t sick because I want to be there for them when they are sick and right now I can’t. I hope they aren’t sick because I miss them. I was afraid it would have been read as a comment on the inconvenience. Please keep in mind that this is what I am thinking in my head, it isn’t necessarily what is happening. 

I was reading another blog today and all I could think of was “fear is the absence of faith.” All I saw was fear in every sentence. Today my fears lie in losing my children in a variety of ways. Years ago my first sponsor gave me a mailbox for God. I write my fears on the piece of paper and put it into the box. Laugh all you want- it makes me feel better! Even if it is only for a few seconds. Here’s the thing: I need more faith to get through this fear. There is too much fear going on right now. It’s causing me to react in ways I don’t like. Breathe in faith, breathe out fear. It can apply to anything. Izzie, my current separation situation, and life in general.

I don’t want to be the caged bird but right now, that is where I am at. Running gives me the sensation of getting away and I am looking forward to doing it tomorrow. Maybe that is why the marathon is so appealing to me right now, I don’t know. I just know that it is time for me to head out and now I feel like I am less tied down by getting this out. 

I was asked how I felt about my situation earlier today and I quoted my favorite horse from Ren & Stimpy “No sir…I didn’t like it.” This isn’t fun for anyone. My cage gets smaller and smaller every day. Some days breathing is a real challenge when the fear knocks the wind out of me and I have had moments when I want to give up. The little support I have gotten has been what has lifted my head up so to all of you out there who have given me words of encouragement, I thank you from the bottom of my heart. 

First steps

It’s official. I have been accepted as a runner on the Miles for Miracles team to run the NYC marathon for Izzie. What started out as a whim became a reality this morning as I forced myself to get up and out for my first solo training run. Saturday was the first training group run and I ran a pathetic two miles which I was thankful for later when I had to drive 300 miles to get Liz in Vermont that afternoon.
I would have been exhausted if I did more than that since I haven’t run in over two weeks. It felt great to hear the suggestions and to be with a group. Being the social butterfly that I am I enjoy being around people, especially around people who have common goals with me.

Izzie is doing very well and talking up a storm. She surprises me with her phrases and the smile never leaves my face when I spend time with her. Addie continues to test patience but she is getting better. I love watching them play together. Their relationship is very special and brings me joy to see them grow closer together. The flip side of that is I also worry about Adeline if anything happened to Izzie. I worry about how she is going to handle the next hospitalization and being apart from her new best friend. September is still a ways away, but we are starting the second week of July so I know that time is passing quickly.

This past week I was able to have the girls at my new apartment. We had a great time playing together, making waffles and playing on the sofa bed. Spending time with them makes my whole day and I couldn’t get enough of it . It made me feel like a mom, which since this whole thing started I haven’t been able to feel until recently . I have been feeling disconnected and lost without them. I wish I had more days like we had last week. We shall see what happens.

Yesterday was a bad day for me. I understand that not everyone gets why I am doing what I am doing. I have been informed that my family is embarassed by my actions and this morning I was told I was a selfish person. If opting out of a marriage that I was unhappy in is selfish than I guess I am guilty. Especially since I didn’t give it chance. I knew in my heart that I couldn’t stay and I would rather leave now than 10 years from now. I was tired of taking out my frustrations out on my girls. I didn’t think staying was the right choice.

So I am being punished with the whispers, judgement calls and constant questioning. I do my best to stand in the direction of the wind that is blowing in my face but somedays I really want to turn away. Some day that wind cuts right through me and in spite of what people may think, it hurts.

I am not selfish because I want to be a better mother to my children. When I don’t have them I am lost and people around me try to provide comfort. I am so grateful for that. This isn’t easy by any stretch of the imagination. I didn’t think it would be but I thought if nothing else I would have the support of my family but even that is unclear.

Here is what I do know: life gets better. It may take some time but it will get better. In the meantime I have to continue to put one foot in front of the other and move forward.

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The Myth of Having it Easy

It’s never easy to admit complete defeat in something. Past experience tells me that it is a good thing in some respects, but knowing that you failed at something when you did make an effort can really suck. Last night I had an epiphany that was not what I wanted to see. It’s what I needed to see. It hurts to know that my actions have caused a lot of damage in spite of the motive behind it being an honest one. Some days it just hurts to be honest even though you know you have to be.

I ended a relationship and it was not an easy decision by any means. Because I am the instigator, the myth is that this is easy on me, that I am getting what I want, and that I am finally happy. It’s going to be a long time until I am truly happy because happiness is a by-product of right living (thanks Bill L.) and I have just started living right again. It’s definitely not easy on me since I have to explain to my four year old that I still love her even though I am living in a different place. It’s not easy when I have to rush over to the house in the morning to see my girls before I leave for the day. It’s not easy leaving and it’s not easy by any means trying to figure out how I am going to deal with my pathetic finances. None of this is easy. 

I think the worst part is realizing how sick I have been and how long I have been thinking this way. Cutting back on meetings and letting my head get out of control. Definitely not easy to accept the responsibility of being the cause of losing the job I loved so much. None of what I am going through is easy. But I need to go through it. I need to do this and to be myself. I need to be a better mother, friend, daughter and colleague. As hard as it is, and some days it is impossibly hard, I know it is the right thing for me. 

Friendly Reminder

This month has been challenging to say the least. I was hired by Cambridge Associates and have rejoined society as a full time employee. Our Miles for Miracles fundraiser was a huge success and we cheered our incredible marathon runners from the sidelines in Wellesley. Isabelle had her second catheterization in a lifetime and we learned that her anatomy is a miracle upon itself. And I had to come clean about a truth I didn’t want to look at, acknowledge or recognize. Circumstances were such that there was no way to ignore it and hiding it turned me into a liar. When your way of life is dependent on “To thine self be true”, one of two things will happen- either you drink or you let the truth come out. And come out it did.
Repercussions are still rippling so I will not digress the situation but those who know me closely will know what I am talking about. I was trapped in the land of damned if I do, damned if I don’t. It was awful. It still is, but today I live with the peace that I am right where I am supposed to be.
I can tell you where I don’t belong. I don’t belong in the world of being the bad guy. I don’t belong in fantasyland. I don’t belong in the I told you So’s. Right now I know there are people who think I am a horrible human being. Here’s what I know about myself:
1. My sobriety comes first. Even before my children.
2. I am being honest because of #1 and as painful as it is, I feel like I am Elissa again.
3. I have gone through hell and back, and this will be another experience that may benefit others
4. I am closer to my family because of this. I have three siblings who I love and miss terribly. Not just one or two. Three.
5. I love being at meetings and connected to my sober peeps. It’s who I am and is saving my
Kosher ass right now.
6. Ok, I’m not kosher but I do lovey faith as it has lifted me especially recently when I wasn’t sure if this in fact was God’s will for me.
7. Regardless of what others may say or think, I love my children. I adore them. And I am MORE than capable of taking care of them.

I belong where I am at right now. And people can form their own opinions and whatnot. They can think I am a selfish, irresponsible person who could care less about the effects her behavior has on her family. But I am Elissa, a good sober mom who is trying to get through another day. And I’ll do it again tomorrow.

When Being Proven Wrong is a Good Thing

It has been a while since I have written anything substantial other than a few rants here and there. Time has gotten away from me. Between the fundraiser and this new job I am trying to land, I have been straight-out, too busy to acknowledge peoples’ birthdays on Facebook kind of busy. That’s pretty busy. Izzie is doing really well and her echo showed no obvious changes. I say obvious since echoes tend not to reveal collaterals which I am sure she must have by now. Considering how active she has become, I wouldn’t be surprised if she had a whole new set of arteries growing in there. She is doing great. We couldn’t be in a better position going into the Fontan at this point. She is almost caught up with her developmental delays and is talking quite a bit. One thing she hasn’t learned is how to slow down.

I’m torn on whether I should teach her. If I teach her to slow down, will that begin to hinder this amazing spirit that she possesses or will it help keep her healthy physically? If I ask her to stop and take a breath, will she learn on her own the feeling of needing to rest or will she get resentful that I am keeping her from pushing forward? I don’t really know the answers right now but I do know that she  is showing me on a daily basis that she can do things I didn’t know she could. For example, she can climb the ladder on the swing set that leads to the slide. She did it more than 20 times yesterday. Everytime she came down the slide she would laugh, clap and then go right back over to the first step. When I was trying to pay attention to Addie she would be halfway up already with no one behind her to make sure she wouldn’t fall. As she reached the middle, I could hear the huffing and puffing start. Didn’t stop her from reaching or climbing the last two steps. When she reached the top she would turn around, smile at me, say something I couldn’t understand or exclaim “ta-dah!” while breathing fast. Without missing a beat she sat down at the top of the slide and wired for one of us to hold her hand as she went down. And then the cycle would start all over again.

If you asked me earlier in the day if she could climb that I would have said no. I would have said, she isn’t strong enough to get up there. She is too little. Or something along those lines. It never occurred to me that I am placing limits on her instead of seeing if she could climb up herself. Izzie proved to me that she can reach higher expectations than I set for her. She showed me that maybe I shouldn’t assume that her heart can’t handle every day activities. At the same time, 20 times was a bit too much for her and she ended up throwing up a little lunch. Oh well. She made her point. Please don’t set limits for me, Mom, because I can and will surprise you.

Which brings me to the subject of this new job I am trying to land. For the past 5 weeks I have been at a financial firm in Boston trying to impress then with my design skills. The position itself is more than just design. It also is about creating compelling content that excites people about the services the firm has to offer. I would be the driver of that content. I was told a few weeks back that this past Friday would be a debrief on my performance at said firm, and the decision would be made to either hire me, or have me stay a little while longer to make sure I am a good fit. The meeting was suppose to be a half hour. One hour and a half later, the meeting broke and I was called into my manager’s office. She told me that I am a great designer. She told me that I proved that beyond a doubt I have the design chops they need for their pieces. What I hadn’t shown was a passion for their content. The concern is whether or not I can dig into their processes and ideas, internalize them, and create successful marketing pieces for them. Will I be excited enough to want to stay after six months or a year? I was told it was a risk she was willing to take, but only if I could be honest with myself about whether this job will be enough. 

I didn’t know what to say. I have never been accused of not being passionate enough about my work- as a matter of fact, I have been accused of being TOO passionate about what I do. What the heck is she talking about? I was so stunned I knew whatever I said wouldn’t appear genuine and I think she knew that too so my assignment over the weekend was to think about whether this type of work would be something that excited me. 

Honestly, I am not a finance girl. I don’t understand finance, nor do I understand a lot about investments. What I do understand is other peoples’ excitement and enthusiasm. I understand that I would need to learn a lot and that excites me. I understand that I would become a resource for other people and that excites me. What doesn’t excite me are numbers. I don’t understand them. My brain has a hard time processing them. Just ask my former math tutor. I think I failed Algebra three times in my scholastic career. The other concern I have is when I don’t understand something, my ADD brain speeds up to skim over material in a desperate attempt to understand it. I have to make a conscious effort to slow it down and re-read many times so I can figure it out. There isn’t enough medication in the world to slow it down when I am trying to figure something out. I offered to read a basic high level brochure on Endowments. I have re-read it at least 5 times already. But I won’t stop until I figure it out. Figuring out complicating processes excites me because it tells me that I am smarter than I give myself credit for. It is an accomplishment. And who wouldn’t get excited over that?

When I was at Eaton Vance, the CEO along with another manager was putting materials together about a new product that would revolutionize the finance industry. It was an extremely complicated process and I had absolutely no idea what any of it meant. My job was to help create materials that would support their argument to the Securities Exchange Commission on how amazing this new product would be. I didn’t understand a single word of it. What I did understand was their excitement. I understood what was at stake  and knew I had to deliver something that was easy to figure out. I asked my colleague a lot of questions and had a few informal conversations which gave me the content I needed to create the materials. It turned out to be a simple explanation on how this product worked, and got them another meeting with the SEC. It put them on the road to getting the product approved. And I still am not 100% sure on how it works. 

Without realizing it, my manager put a limit on me. She felt that I didn’t show enough curiosity to give people confidence to hire me. I think that 5 weeks isn’t enough time for me to change gears from being the vehicle for content to actually driving the content. It was never a level playing field to begin with. The unfairness of the situation did something I don’t think she or the others expected. It lit a fire of “You want to see excitement? I’ll show you excitement! I’ll show you how passionate I can be!”. I’m glad that she was honest with me, and am looking forward to walking into her office on Monday morning and saying “Bring it.” But first, I have to read this brochure one more time. 

 

 

 

Echos of Denial

So here we are with 2 days until the fundraiser and one day before Isabelle’s sedated echo. I have been pretty preoccupied with so many different things- people, work and the fundraiser that I haven’t thought about our appointment on Friday. It’s going to be a rough one. We have to have her abstain from milk after 2am, and then she can have juice until 6. Awesome. Then we have to keep her awake so the chloral hydrate will be effective. The whole process is pretty overwhelming in itself. Anyone who has a toddler knows that if anything sets them off, it’s being hungry AND tired.
I remember our first echo after her initial diagnosis at 17 weeks and praying there was some mistake. Maybe the left side would miraculously grow and we can all laugh and thank God this was a terrible mistake. But that isn’t what happened. It took forever for Dr. Levine to find her aortic arch. Her left side hadn’t grown at all. It was all the same and nothing had changed.
Going into this appointment tomorrow I am praying nothing has changed. I am praying there is no tricuspid regurg, any surprises. I pray her ‘squeeze’ remains good and that her function remains good. I have learned by watching others that there are always surprised lurking inside like ticking time bombs we don’t know are there. It’s scary and I didn’t know I was scared until I forced myself to think about it just now.
Please let everything be the same because this is hard enough as it is. Listening to her try to breathe after chasing Addie for a few minutes sucks. Seeing her lips turn purple from having ice cream because she gets cold faster gets old. And after witnessing a fellow heart mom lose her child after he had a transplant reminds me that once again there is no cure for what she has. Not even a transplant will be enough to feel safe. 75% of HLHS children make it to their 5th birthday. I hope to breathe a little easier by then.
Just another moment where I realize that as lucky as we have been, there are no guarantees in the heart land. Each moment is precious. Every giggle, smile and snuggle.

Preparations

In a few weeks, we are having our big night celebrating Boston Children’s Hospital, Isabelle and our amazing runners. Our runners are preparing for the marathon with their training and disciplined mileage. This event is requiring lots of preparation which is being expedited by some incredible family and friends. There are many kinds of preparations I participate in daily. From packing my gym bag, getting the kids ready for the day, or preparing for a presentation, I am in a constant state of in between. That is a good thing. 

Tonight, a family is preparing to bury their niece, daughter, granddaughter and cousin. Another senseless victim of narcotics she succumbed on saturday night to an overdose. One of many that have plagued this town over the past few months. Tonight a mother is preparing for one more night without her son. 30 days later after he died when he should have been enjoying post-fontan life. All around me people are preparing themselves to walk through another difficult moment in their lives. 

And there is the preparation we are  starting as we slowly trudge towards open heart surgery number 3. Now I can see what is happening when she runs. I can see her lips turn purple at the drop of a hat or a few degrees. Her sister tries to get her to chase her around the rom and she can only make it around the coffee table. She doesn’t realize it’s because she has half a heart that doesn’t have the stamina to follow suit. I do though. I know I am looking at a toddler who is ready for this next step. And I am far from prepared mentally to hand her over once again. Oh I talk a good game, Dr. Emani rocks…we got this…but when I stop to think, my stomach twists into knots.

A few new developments since Izzie’s last surgery. She’s older. She panics when she sees a white coat. Or scrubs. She knows what they are and her fingers instantly grip my shirt in fear. She cries and looks to us to get her out of whatever situation we have her in. But the situations are to keep her safe, like the vaccines for RSV. Thanks to that vaccine we have been fortunate enough to fight off respiratory infections. She doesn’t know that it helped her she just knows that every time she sees Nurse Laura she gets hurt. Just like she won’t understand that we have to get her sleepy so we can see pictures of her heart, that the blood draws that will hurt her are so we can make sure she is ready for the surgery that will save her life. Surgery that will hurt. Chest tubes that will hurt. It all hurts and it hurts me to think about it.

I run in the morning not just so I can get back into shape but so I can feel for a few minutes (sometimes for longer) what it feels like to be Izzie. What it feels like to run and not be able to catch my breath. To have limitations. I run because I want to understand how she feels. And I run because I can. 

The overdose really gets me because we may lose our daughter to a physical anomaly that we never asked for. At the same time, no one asks to be a drug addict. No one wakes up and says “I think I will get drunk, yell at everyone and lose my job.” I woke up and thought “It will be different this time. I won’t make the same mistakes again.” And lo and behold- ia made the same mistakes. Any premature death feels senseless- whether it is from complications caused by a condition or self-inflicted. The result is still the same- a loss. And how do you prepare for that?