Yesterday, I watched a woman who was in the first few months of pregnancy willingly light cigarette after cigarette. I watched her hand her 10 month old to someone else to hold so she could smoke. Other stupidity ensued and as I angrily left I composed what was to become the Rant of the Century for me. I also took it upon myself to post a picture of this ‘woman’ smoking and hashtagged it :#nosmokingwhilepregnant. What happened next was a whole new level of ridiculous.
Sure, it was cruel to post a picture of someone doing something really stupid. I mean, where was Facebook when I made some of my brilliant mistakes? Mistakes like drinking to the point of excess where I couldn’t get up for work the next day. Putting my own seflish addictions in front of my daughter’s well being. Mistakes that had my mother stand in my kitchen and tell me that I either get my shit together, or Liz was going home with her.
So who am I to judge? What gives me the right to look at this stranger and make such a judgement call that would cause so many people to be disgusted at her decision to smoke? Who gave me the right to take her picture and post it in such a public forum that would spread like wildfire, causing people to comment and make judgements of their own? Who died and made me God?
I don’t know. No one, I guess. Here is what I do know:
- I know that until you have heard the words “I’m sorry to have to have to tell you this, but your child is going to need surgical intervention in order to LIVE.” then you need to stand down, and shut the fuck up.
- I know that until you have gone for fetal echocardiograms and PRAY that the other side of the heart grew back miraculously only to have tears roll down your face as the technician does her best to find the damn aortic arch, you need to stand down and shut the fuck up.
- Until you have held that newborn in your arms knowing that you may have a limited amount of moments where you get to hold her so the nurse tells the staff they can wait transporting her to the NICU, again stand down and shut the fuck up.
- Until you have received a phone call during the first night of her life, and was told by a nurse that she stopped breathing and had to be put on a ventilator, then stand down and shut the fuck up.
- Until you have stood on your feet, tears rolling down your face while you stroke the baby’s hair so she knows you are near because you can’t pick her up, stand down. Shut the fuck up.
- When you have stayed up all night, holding your baby entangled in wires not willing to move an inch because you want to hold her as long as you possibly can before you hand her over for surgery the next day…stand down. Shut the fuck up.
- Until you have handed that baby over to the surgical staff, giving her one last kiss on her cheek, and not knowing if you were ever going to see her alive again…you know the drill. Shut the fuck up.
- When your baby has been cut open, chest split in half, heart stopped, put on ice, go on bypass and have their entire circulation re-wired….stand down, shut the fuck up.
- Until you have seen your baby with a tube down her throat with tears rolling down her face filled with fear at what was happening to her, unable to make a sound and scream in silence…you better stand the fuck down and shut the fuck up.
- Until you have had to stress about calories, about her gaining weight, losing weight, trying desperately to find an answer as to how we are going to stay out of the hospital, stand down. Shut the fuck up.
- When you know you have to prepare to hand this child over and over again for two more open heart surgeries before she turns three, stand down, shut the fuck up.
- When you read statistics about survival rates and realize that only 75% of children with her condition make it to age 5, stand down. Shut the fuck up.
- When you see on Facebook that another child has lost this battle against congenital heart disease, another heart mom cry out in anguish while you sit helplessly on the sidelines…stand down. Shut the fuck up.
- If you have ever stood in a hospital room and hear a code go off, watch doctors and nurses running while shocked parents are led out of the ICU….you know the drill.
- If you ever have to worry about your child making it to kindergarten, first grade, playing soccer, making it to prom, or just to adulthood, stand down. Shut the fuck up.
You see, most people don’t know what this is like, and good for them. But we who live in the heartland, or even the Land of Cancer, do know what its like and we never did anything to our bodies or to our babies that caused our children to be sick. We all did what we were supposed to. And what gets me is even though there is no known cause for CHDs, people still blame us anyway. I know people have mentioned that maybe we skipped a vitamin that day, or didn’t take enough folic acid. Or maybe it was in our genes….whatever it is, we too, are being JUDGED. No one escapes judgement. People always think they can handle a situation better.
So before you go off on me for judging someone who, in my eyes, did something completely irresponsible- stand in THESE shoes. See items 1 through 15, then stand down, and shut the fuck up.
Today Isabelle had an appointment with Dr. Sadhwani of the Cardiac Neurodevelopmental Program at Boston Children’s Hospital. She was not happy being trapped in the car for over an hour and decided that the chest clip on her car seat was far too annoying to bear. By the time we reached Hanover she was halfway out of her car seat demanding goldfish. I complied, and tried to keep her amused in spite of the “No.” I kept getting from the back seat.
“Do you want your milk?”
“Can I get your tummy?”
“Do you want to sing a song?”
I turned to look at her at one point and heard “Noooooo!”
You get the idea. She was not happy. Neither was I since I had to listen to more discussion about the Patriots, balls, deflated whatever, and what an ass Goodell is all the way in thanks to the various sports stations in the area. I welcomed the “Traffic on the Threes” to break it up a little. I even tolerated Jon Keller as he shamed the Boston Olympics peeps for being stupid enough to think the City of Boston would want the Olympics here with that up and down voice he has when being condescending. Or is that really how he talks?
After a cookie, goldfish and a few “Look Izzie, the city!” exclamations, we made it to Longwood. Usually it takes us about an hour to get to BCH. Today was a little more than that but we were still on schedule. We figured out how to get to Farley through Fegan (only BCH peeps would know what that is) and to the 6th floor we went! She was weighed and measured. She didn’t cry. There wasn’t any sign of any distress of any kind. As a matter of fact, when we were in the lobby waiting for an elevator, Izzie exclaimed” I want to see the doctors!”
After waiting a little bit the doctor came in and greeted us with lots of activities. Izzie was going to play with the “toys” she brought in. Izzie wasn’t keen about sitting at the table but relented when she saw the different items she would be playing with. And so it began. The repetitive questioning about which crayon was which color, did she know her shapes (she did. She even knows octogon but we didn’t divulge that information) and which duck was bigger commenced with little bribery. Izzie enjoyed completing each task. Perhaps it was my expression of joy (and relief) when she recognized objects appropriately. Soon she learned that every time she completed a task, we were so happy so she went along with what the doctor was asking her to do.
We played in the hallway. She ran when asked, tried to hop on one foot and jumped with two feet. The doctor was happy to see how well she moved but noticed that after a little while she began to breathe heavy. We shrugged it off, she breathes heavy but it doesn’t stop her. It didn’t this time either. Izzie proceeded to run after a soccer ball and go up and down the stairs to show coordination. Today she took some steps by herself without holding onto anything. First time ever. Chris and I were thrilled.
The doctor gave her a snack of crackers and juice to give her a break and reward for her hard work. Izzie obliged the doctor and completed a few more tasks with some prompting. I could see that she was showing signs that she was over it with the puzzles and if this lady asks what color this crayon is one more time….The doctor knew she was running out of time, so she offered Izzie the chance of a lifetime- to cut paper with scissors.
“Izzie, do you want to play with the scissors?”
Izzie’s eyes widen in amazement and she responds with a resounding “Yes!”
“Ok, three more pages and then you can have the scissors.”
If Isabelle could say “Really?” in appropriate context, I think she would have at that moment. The next few pages were an agonizing “Izzie, do you see the picture here? (flips page) Ok, where on this page do you see that picture?” “Scissors. I want scissors.” “Ok, soon you will have the scissors but I need you to answer this question.” I bet you know where this is going.
Eventually Isabelle was able to use the scissors and she cut paper for the first time ever. I am not sure Chris was too thrilled that she learned this skill but I was happy she could do things I didn’t know she could do. Including use scissors. The doctor then told us that she would gather the results and let us know what her thoughts were for Izzie. After a few minutes (and for me a few text replies later) she came back in and I prepared myself to hear the results.
She did incredibly well. It is rare for her (the doctor) to say this but she agrees with the staff from Mt. Pleasant and felt strongly that Izzie did not need services any longer. She reached her milestones appropriate for a three year old. She is ready for preschool emotionally, socially, and physically. She may need a medical plan because of her HLHS, but other than that, she is on point for where a heart healthy child should be at age three.
I thought back to our first appointment with the Advanced Fetal Medicine center where Dr. Levine told me that our child may be significantly delayed and a few IQ points less than my other two children. The memory of sitting there not knowing what the future held for us struck me. The fear enveloping me, not wanting to have hope because what if I get my hopes up only to not be able to take her home with us. And the thought no one wants to admit they have “What am I going to do if the child is significantly behind the others?” Yeah. I asked myself that question as I sat listening to the obligatory statistics Dr. Levine had to tell us. And then I heard “Tennis.”
“I’m sorry, what?” I asked not sure if I heard her correctly.
“One of my kids plays tennis. Another is a gymnast. Some are delayed and some are right where other kids their age are. Some only are a few points less than their siblings are on the IQ scale.”
And here we are. Izzie is meeting her milestones. Sometimes I wonder if it was her high oxygen saturation levels after her Norwood that allowed her brain to grow the way it was supposed to. Other times I think it is the incredible staff at the Kennedy Donovan Center who sang songs and engaged her every week. And then there is her surgeon, Dr. Emani, who did one of the most perfect repairs other cardiologists at BCH has ever seen. (Direct quotes people- I heard them say it) Or maybe it is the fact that Chris and I have put our differences aside, and parent our girls together. We try hard to be available for them and provide stability for them, which is essential for brain development.
Whatever is the reason, Izzie is ready for what every three year old is ready for- playtime and snacks. Ok, playtime, circle time, recess, fun activities, letters, and maybe a few snacks. My hypoplast is ready for whatever her school path will take her. Thank God we live an hour away from the best hospital in the world we could have gone to. Thank God I live minutes away from where they live with their dad so I can be there in a flash if he needs me or they need me. Thank God I live in a state that provides supplemental medicare (thank you taxpayers, I mean that) on top of her health insurance so we can provide her with the care she needs. Thank God we live in a country where we have religious freedom to pray to whatever God we need to pray to and a healthcare system that will not leave her behind because she was born with a condition she didn’t ask for. Thank God. And so I will.
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.
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.
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.
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.