Mt. Pleasant

I first laid eyes on Mt. Pleasant school in September of 1981. We were staying at my grandparents house while waiting for our new home on Lincoln street was being finished. I wore some crazy outfit that included a skirt, purple tights and brown shoes. Apparently I had never heard of black flats at that time. My older sister Laurie was starting school at Nathaniel Morton down the street and walked me to the entrance of the school. When we were growing up, Laurie was my safety net. If I was scared, as long as she was in the vicinity I would be ok. This time she was headed down the hill and to the right without me.

I met some incredible people at that school. Some of my closest friends I met in those polished hardwood hallways. When Liz went to preschool there I was over the moon that she too was walking the same creaky floorboards I once walked on. She also met friends who are still her friends today. Liz was a peer, a student who served as a role model for other students with special needs. Mt. Pleasant is an extension of Early Intervention and fills the gap where EI ends at age 3 and kindergarten. There are physical therapists, speech therapists, an on-site nurse, and developmental programs that enrich all the students. 

Adeline was also a peer and graduated recently. Some of the parents told me what an incredible peer she was and a great friend to their autistic son. A few of the teachers mentioned that they would miss her bright, enthusiastic personality this fall. I am so thankful that she was able to go there. 

Today we had the second half of Isabelle’s evaluation for services at Mt. Pleasant. This meeting would decide what plan we would be taking for her in the fall. She was registered as a peer but because of her condition and her services through EI she would need this evaluation. The week prior she did some play with the physical therapist while we talked about her medical history with the school nurse. Today we reviewed the results of the PT evaluation. 

“Isabelle was a joy to evaluate. She did very well with independent gross motor play as well as following directions and reciprocally playing. Isabelle participated in a 45 minute evaluation without any sign of fatigue. I was pleasantly surprised at her go-get attitude.” 

The evaluation went on to say that she is on point with every expectation for a preschooler. She has an age appropriate gait and run. She had no difficulty in standing up and can jump with two feet. She can jump 5 times consecutively without falling. She can do all of the things an almost three year old with a healthy heart can do. 

When we were first told about hypoplastic left heart syndrome, we were not sure what her future would be. Reading each line of this report this morning drew tears from my heart and from those worries I had from three years ago. It was decided that she would be a peer at risk- which means she would need a little extra monitoring because of her condition but not because of developmental delays. Mind blowing when you think back to August of 2012 and seeing her hooked up to a wall of IVs and machines. 

I don’t usually post about Isabelle’s development out of respect for my fellow mamas whose children still struggle with these tasks or who are suffering on the cardiac floors as I type this. Izzie is remarkable and I wish all of my mamas had the same joyous outcome we have been blessed with. I will go out on a limb here and say that to me, it is a combination of incredible care at Boston Children’s, a surgeon who did three perfect repairs allowing her to get maximum oxygen to where she needed it from day one, and early intervention. And it’s the result of educating ourselves and connecting with the cardiac community. I would not have known to ask the questions I needed to ask or seek out the services we needed without other heart families experiences. Her success today is our success. I am so grateful for such an incredible little girls.   

Lesson Learned and Many More To Go

Today I attended a luncheon honoring women who have been inducted into the YW Boston’s Academy of Women Achievers. The CEO at the firm I work at was one of the honorees, and she had extended the invitation to include a few women from my group. I always jump on networking opportunities for both personal and professional reasons. It turned out to be a lovely event, and I am really happy I went. As always when I hear inspirational speakers at these types of conferences, I tend to reflect on my own current situations and try to see ways I can improve myself. Words that came across loud and clear were “authentic self”, “fake it until you ARE it”, “Passion” and “Pay it forward”.

Authentic self. What does that mean exactly? I have taken a chance and revealed my authentic self to a few of my “friends” recently and have received mixed responses. Some have conveyed their support. Others have asked a few questions, and then stopped talking altogether. Then we have the ones that don’t respond at all. Does this bother me? Of course it does. It bothers me to be rejected, especially after being honest. Many people say they admire honesty but the truth is, they want it on their conditions that are best for them. What do I mean by this? “Be yourself” is what I have heard my entire life. I have also heard “You need to calm down”, “Do you have to be so outspoken?”, “You wear your heart on your sleeve, can’t you just pretend to be (insert socially acceptable behavior here)?”  I pay the price being myself sometimes with the loss of friends, relationships, and even jobs. Over the years I have tried to learn to manage these defects of character only to find that they just morph into other defects. Being myself has its drawbacks and trying to be what others expect me to be only leads to depression.

I have recently discovered that someone’s authentic self has caused me to be more honest about who I really am. Something I wasn’t prepared emotionally for at all. We took a risk and some of the reactions were unpleasant. At the same time, the majority was very positive so it isn’t an experience I regret. The experience showed me the limitations I put on myself. It opened my eyes to where I really am at with this situation in my life as oppose to where I would like to be. I have a lot of adjusting to do which I am willing to do because I truly believe this is where I am supposed to be. The lessons I see before me are invaluable, including the lesson of who my friends really are.

Last Thursday someone who has no idea or experience with a particular topic decided to share her opinion. After reading it against my better judgement, I became angry because it came from a place of pure judgement and not of intellectual curiosity. She proceeded to agree with this article that cites antiquated assumptions about gender and identities. You know, things that she doesn’t encounter in her Christian world and that she has no business starting a debate about. If you have experience or know people that struggle with gender , that’s one thing. I am pretty sure she does not and when I commented about my own PERSONAL and PAINFUL experience, I was told that it was a perspective, not a reality.  Hey-It’s my reality, bitch. Just like being a heart mom is a reality. Yes, I am going there.

The comments reminded me of when people tried (and sometimes still do) to relate to open heart surgery when they compare their childrens’ ear tube surgeries to Isabelle having her chest cracked open and her heart stopped. Folks- there is empathy, there is curiosity, and then there is being stupid. Comparing holes in the heart to missing an entire side is like comparing an apple to a grape. Comparing gender issues to being insane or having a fetish is just wrong. Seriously. Just stop. Go back into your homeschooled bubble and to the things you know about. I don’t pretend to know about Jesus so don’t pretend to know anything about having an open mind.

Perhaps I need to pray about this resentment. Duly noted.

Passion. My passion has always been my family, liberal and or Jewish causes, and congenital heart disease. Those who know me know I am also passionate about my sobriety and about my work. My passion for creating effective compelling design is what brings me to work every day. I thought I lost it, and the last month I think I found it again. Today I heard ways of channeling my passion and taking a leap into uncertain waters. I take leaps all the time. Sometimes with glee, other times with terror- but I make them. Having my children grow up Jewish is a passion, and teaching Sunday school is too. Although I am taking a year off for personal reasons, I hope to continue the following year.

I am passionate about my sobriety. I go on commitments, I speak, I open my home group meeting just about every Friday. It has saved my life. Period. I would be dead if it wasn’t for my commitment and passion for sobriety. Which brings me to “Pay it forward”. Giving back what was freely given to me is the name of the game. I had the pleasure of being given a service position in my group. I also have been given the opportunity to give back to one of the many heart organizations I love and am part of. Combining my passion for CHD awareness and my love for design came together this week bringing me a sense of fulfillment that has lifted my exhausted heart.

The ‘passion’ I need to lose is my need to be liked and accepted by everyone. It’s just not possible. Add my aggressive personality to the mix and we all know that just isn’t happening. Recently, I took a risk and put myself out there. I also know that the price of being authentic has been hearing crickets instead of responding to the posts I make on peoples’ pages, even non-confrontational ones. I want the heart moms I am ‘friends’ with to like me. I want fellow sober peeps to like me too. However I am learning fast that when I do reveal who I really am, these “friends” of mine head for the hills. Someday it will be ok, but that isn’t today. Today I am sad that people are no longer talking to me. It upsets me that people who claim to have open minds really don’t. And the lessons that lie before me are painful ones that will require a great amount of strength I was hoping to get from some of these people.

Sweet Pea

February 14, 1996 I found out I was expecting. On October 17, 1996 I gave birth to a baby girl, 7 lbs 9 ounces at 7:45 am. After cleaning her up, a nurse handed her to me and I stared into her beautiful little face wondering how on earth could I have lived without this little person in my life. I held her in my arms and said to her, “You are so little, I cannot imagine you being a year old!” The brilliance of the autumn leaves filled the window. My heart was full.

In 2001, I registered this little girl for kindergarten at the school next to our home. It my mother’s high school. It was my middle school and now, it was to be her elementary school. On the paper telling me what class she was in was her graduation date. 2015. 2015? That was so far away! I had years before I would have to think about her graduating.

This past week I have been reflecting about Elizabeth, how she came to be and how we have lived our lives together the past 18 years. I have thought about her first drawings of blobs with tiny smiley faces in them. Watching her draw stars with my best friend, Christy at the kitchen table. Reading her stories every night, tucking her in, getting her ready for school. Meeting (and sometimes marrying) different people whom I thought would make our lives whole, not realizing that we were just fine as we were. Me and my Sweet Pea.

Today I watched her put on her cap and gown in preparation  to make the final walk as a high school student. The hardwood floors of Mt. Pleasant school have ended here, on the athletic field of Plymouth North. I looked at the faces around me of the students and of her.  It reminded me of that first day when I held her and looked into her beautiful face – full of promise and hope. What would she be like? Would she love to swim as much as I did? Would she love to laugh and sing? Would she have her father’s musical talents or be a writer like me? How would she see the world?

Twenty five years ago it was my moment to walk beneath the blue and white flowers towards the podium. Today it is her turn. I cannot express what these past 12 years have been like watching her walk through the very halls I walked through as a Plymouth student. Learning from a curriculum my mother created in the schools my grandmother helped build.

Elizabeth is everything I ever dreamed she would be. She is beautiful, insightful, poetic, artistic, incredibly talented all wrapped up within a beautiful old soul. I could not have asked for a daughter better than what I was given, for I was given something more precious than anything on this earth. I was given an Elizabeth Marie Sheldon.

Underlying causes and conditions

Yesterday was a bad day. Between an awkward one on one meeting with my manager, a terrible commute in, not being able to have my kids overnight…apparently I was off the beam yesterday morning before my feet hit the floor. I did ask for help when I got to the office but even so, I felt like I couldn’t hold onto any serenity at all throughout the day. I have been feeling like this for a few days now and frankly, it is exhausting. I feel like I have no control over what I say or do, which is never a good thing for an impulsive person such as myself.

As I started to walk through the events of yesterday and see how I could do things differently today, I started to see what the underlying cause was for the initial turmoil. The wrapping was different but the issue was still the same. Never ceases to amaze me how the same stuff affects me over and over regardless of the disguise it comes in. No matter how many times I write about it, pray about it, put it in my God Box or let go of a metaphorical rock, the same reaction happens and all hell breaks loose. Maybe someday before I die I will figure out how to stop the crazy train before it leaves the station.

There have been a few times at work when I have given my professional opinion and lately everything I have brought up has been shut down with little or no discussion. I swallowed my pride on all occasions in the best interest of keeping my job. I had my one on one meeting, where I was told that I needed to ‘justify my value to the team.’ Once again, I said nothing but nodded in agreement with this knowledge that I need to prove to everyone that I don’t suck. Awesome. Next on the Shit List is not being able to have my girls because Izzie wasn’t feeling well. Not anyone’s fault but it widens the space between us. After putting them both to bed I went home and discovered a pile of crap coming down from the ceiling that was being jumped on by the rambunctious two year old upstairs. At that moment, it felt like people didn’t realize that anyone lived downstairs or cared for that matter. Lost. My. Shit. Had a hard time sleeping, go figure.

The dust settled (literally and figuartively) and I was able to process the feelings behind the irrational actions. Apologies were given, and I talked about the incidents with various third parties. What was wrong with me? Why was I so angry to begin with?

Feeling like I had to justify my presence brought up my Fear that I really am worthless and that this was another message from the Universe that I didn’t belong here. I was a mistake from conception and this proves it. I have to prove my value at work, at home, and in all areas of my life including my kids. One of my family members broke the biggest rule in my What Not to do In My House Book without a care in the world about how I felt. I shouldn’t have to constantly prove that my feelings are important to everyone around me but that is exactly what set me over the edge yesterday. My feelings, me. I am not important enough to be part of anyone’s equation.

The other feeling that swam alongside the I Am A Mistake concept was jealousy. I was angry that my last delivery of a baby was shadowed by death. When Izzie was born I had to be cautiously joyful- if there is such a thing. Happy but not too happy becuase what if she didn’t make it out of surgery. What if after 9 months of being with me I would lose her in spite of our efforts? I was reminded that birth is supposed to be the happiest time in a new mom’s life this morning. And I knew then that I was jealous. It is. And it sucked that my last experience was so interwoven with fear that I couldn’t enjoy the moment that i deserved to enjoy. I was robbed of that and that is my truth.

That doesn’t excuse bad behavior, however. It doesn’t give me the right to lose my head after a bad day. My perception of the world has completely changed because of Isabelle’s CHD. My empathy has changed, I look at everything differently and through a skeptical eye. That doesn’t mean that everyone else’s reality has changed because mine did. It means I need to pause before I react to things. It means that I need to remember that other people’s feelings are just as important as mine, regardless of the different perceptions.

For the most part, I know I am not a walking mistake. I do. But sometimes those old buttons are pushed by day to day activities and before I know it- BAM! The fuse was lit on my way home and I didn’t even know it. Today is another day and so far it has been better. As always, thanks for reading.

6 Month Reprieve

You would think that I would have breathed a sigh of relief when we were given the news that we didn’t need to see the cardiologist for 6 months. That her heart is functioning perfectly for having three chambers. That there is no substantial fluid around her heart or that her squeeze was being affected by the new pressures and circulation. Nope. All I could think about was getting back to the office. Back to my laptop where I had multiple projects going all with deadlines of yesterday. My head should have been with my heart yesterday with rejoicing in knowing that we have made it through the Fontan tunnel. Instead, both my heart and my head were living in sheer panic of what ifs and how am I going to finish…blah blah.

How important is it? I remember being asked that a lot when I would get angry about…everything. How important is it that I be valued and appreciated? How important is it that I feel like I am getting assignments completed. How important is it that I have a computer that actually works and helps me get these assignments done. There are a few important things here but I can’t lose my head over every one of them. But I did this morning. It isn’t even 10AM and I already have mascara down my face from the pressure. I woke up later than I wanted to. Headed out much alter than I should have and stressed all the way into Boston on the train. I can’t work on the red line like I could if I were on the commuter rail. And because I came in late, I will need to stay late too causing me to miss more time with my children.

Which brings me to another sore spot in my chest. My girls are sick with colds and I haven’t been able to be available for either one of them. Last night Izzie threw up in Chris’s bed for the second night in a row and I wasn’t there to help. I couldn’t help anyone. It feels awful. I can’t be available to my kids when they are sick because they shouldn’t be shuffled around if they are not feeling well. I am the biggest loser in this situation and it hurts like a bitch today. They don’t come to me to be comforted anymore. The other night Izzie kept pulling away from me and reaching for her Daddy instead of letting me rock her to sleep. I don’t know what else to do other than keep putting my foot in front of the other and hold her anyway. She did give in and cuddled with me but it was agony not feeling like her mother. I feel more like an aunt these days than a parent.

And what is happening with my divorce? Absolutely nothing which isn’t good considering I have a deadline of financial aid forms I need to start. I feel like there is this elephant in the room with dollar signs for eyes and no one is saying anything for fear of breaking out into another argument. At least that is where I am coming from anyway. I know we have to talk about things and I know that I responsible for a lot of what is going on which makes talking about this even harder. I want to be able to help financially and I can’t. I want to be able to have more time but my schedule is ridiculous.

So we have a 6 month reprieve from doctor’s visits and that is a great feeling. The only great feeling I have at the moment. I am holding onto this with both hands. These feelings are so fleeting no matter how many times I get on my knees and pray in the ladies room they always disappear to be replaced by panic. Panic that I am being seen as someone who isn’t into her work. Seen as a bad mother. Seen as someone who is just out of control. I hate feeling like this and am hoping that like everything else it will pass. Until it does, pass me the tissues.

September 30

Tomorrow I turn 42. Tomorrow is the 42nd anniversary of when I was brought into the world thanks to the selfless sacrifice Patricia made that day in September 1972. I was handed over to my parents three days later. One act of selflessness gave another the opportunity to have…me. It’s taken years for me to reconcile the issue of being handed off to someone else, especially after I saw the original paper work showing her purposefully giving up her rights to me. I had an incredible home, living family and little reason to have discontent. But it was always there lingering in the shadows.

I cannot remember a time prior to 1993 that I felt comfortable in my own skin. There was always the feeling that there was something fundamentally wrong with me, regardless of how much I tried to be what I thought I was supposed to be. Something was always off. In 2000 I went up to Montreal with a friend and couldn’t believe all the people I saw who looked like me. It was enough to put the search for Patricia to rest. I no longer had that need to find out where I came from.

Last year i decided to do the DNA sample test to see what my genetic background had in store for me. What they don’t understand is, I only have the first and maiden name of my birth mother so….I can’t create a family tree from that. Please stop sending me emails encouraging me to find my origins. My origins are Newburyport, Chelsea and topsfield. That’s it.

I am so grateful Patricia made the terrible decision to give up her child so she could have a good life. I hope I have had a good life that made it worth the pain she must have gone through. There are times I wonder if she would be proud or pleased with how I turned out. There is no father listed on my birth certificate. Completely blank with nothing to go on. That’s ok. It was easier for him to make that choice obviously. I can’t really say that since I have no one to ask.

I get to celebrate with my girls and I am happy about that. Hearing that Izzie won’t need to be seen for a while would make an awesome birthday present . My children have my genes and are the branches on my tree. The roots start with me. Thank you Patricia, for giving me the chance to plant them and thank you mom for taking such good care of them for 42 years.

I would be amiss if I didn’t mention my mother. If anyone was meant to be my mother it was her. She couldn’t wait to pick me up that day in October. She continues to support me even when she isn’t sure how she feels about the choices I make. She is always there when I need her. Maybe ten minutes late but there nonetheless.

Just Do It

One of my favorite ad campaigns is the Nike “Just Do It” one that basically says quit complaining about your fat ass, just run. Ok, maybe that’s not what it says to everyone but that is what it says to me. Just run. Just go to the gym. Just register for a race. Stop whining and just do it.

When you are thrust into the Heartland ‘Just Do It’ has a new meaning. You aren’t given the luxury of time to weigh pros and cons. You never know how much time is on the clock because it isn’t clear. There are no guarantees and nothing should be taken for granted. You don’t have time to waste.

I don’t ever want to look back at my daughter’s life and say “I wish I fought harder to get better care. I wish I kept pushing for another look, echo, or cath. I don’t want to have regrets if I can avoid them. I live with many regrets, the biggest being not telling my best friend how much she meant to me while she was alive. How I wasn’t there when I could have been. How I should have followed my gut instinct to reach out and tell her how sorry I was that she couldn’t live with me anymore. Instead I am left with an emptiness of what if.

And then years later I get blessed with a child that has one of the most severe congenital defects you can have. Thank God we live 40+ miles away from the number one cardiac center in the world. I don’t have to arrange for transfers, be on the phone with insurance companies begging for better care. Instead we have been blessed with being here but I watch many out there suffer trying to get their children the best possible care they can get.

And I also watch people not understand the severity of their child’s condition and wait too long or do nothing at all. No, retracting isn’t normal. No, Hershey’s isn’t a great hospital when CHOP is not far from you. No, not vaccinating your child with a CHD is not a good idea. No, blue tint to the fingernails and mouth isn’t a good sign combined with no weight gain.

I see moms, aunts, and grandmothers trying to get children they love the care they need and can’t for various reasons. It’s hard to watch. It’s even harder to watch a mother wait on getting transferred until her child is too sick to recover. Even with people giving suggestions and providing help. I wish I lived closer to the city so I can offer what living space I have to someone who needed to be here but couldn’t afford housing. I ask myself every day “what can I do to help someone get here?”

Boston is the reason why Isabelle is doing as well as she is. Period. I know there are other good centers out there, but there is no doubt BCH is a huge part of her success up to now. I want my heart mama friends to have the same success. I want their children to get the best chance possible even when every other center thinks its impossible. I have witnessed too many examples of people who were given another chance here. It’s amazing. The Heart Center has been jammed with patients because so many parents are just doing it and making the transfers happen. Yes, it bumped our surgery a few times but when I think about what other people have done to get here, it doesn’t bother me. And her surgery happened anyway.

Just do it. If something isn’t right with your child and CHD runs in your family, just get an echo. Get a second opinion. Find answers. Don’t settle for less. Your child is worth every effort regardless of what center you are part of. I just know this is true for me. And this applies to my constant complaining about how out of shape I am. Just lace up and head out.

And while I am writing this, Izzie had another famous vomiting spell. It was brutal to watch while I was holding her. This was her second one today. I know it’s normal to have a crazy stomach post op, but this has been crazy. I demanded Zofran after this last bout. Yes, demanded it. Watching her writhe away from me helplessly was enough to get the demands going. No hesitation here. I used to think that my impulsivity was a major defect until I became a heart mom. Now I see it as an asset in certain situations. Like the one we just had a half hour ago.

Moment by moment. There is no time like the present.