Letter to Addie’s teacher 

This letter was written for Addie’s kindergarten teacher in response to the announcement that February 5th is the 100th day of school. The kids were sent home with a cape to decorate with 100 items to commemorate the 100th day. For us, it’s also Wear Red day for CHD awareness. 

Hi Mrs. Palladino,February 5th is a very special day for us, as it marks the beginning of congenital heart disease awareness week. Children with CHDs don’t get very much recognition as a whole, but in our family, it always makes its presence known through blue lips, unpredictable vomiting for no apparent reason, and laying down in the middle of playing. 
Addie knows her sister’s heart doesn’t have the right number of chambers, and she also knows that hospital stays are just around the corner even when we don’t expect them. She has asked me if we can just go get a new heart for her numerous times. It’s tough to explain to her that it isn’t that easy, and that even with that gift, we will always be looking over our shoulder. 

Addie has been profoundly affected by her sister’s illness. She tells me when she thinks Izzie is too blue or that maybe she needs to catch her breath. She worries about her more than she lets on. It’s not fair for a 5 year old to have to worry about their sister the way she does, but it’s our life. She has become used to it like the rest of us.

I’m telling you this because February 5th is Wear Red day. We wear red for Izzie to support awareness about her disease. We wear red for our friends whose children are still suffering. We wear red because like pediatric cancer, there is no cure for CHDs- not even surgery. Izzie will always have issues that will need to be dealt with. We have been so blessed so far and I love watching her run around the front of NMES like all the other kids. 

CHDs are silent. They sometimes don’t rear their ugly heads until a child collapses in a soccer field or a pediatrician hears a murmur during a check up. One in 100 children are born with a form of CHD. So on the 100th day of school, February 5th, we will be in red with our special cape honoring Izzie and all her friends. 

It’s a significant moment for us, and for Addie. She has struggled with all the attention given to her sister, but is excited to tell the world about her awesome sister on her cape.

I know she will be very excited to share it with you and her class!

Thank you for your time.

Sincerely,

Elissa and Chris

Three of the many unpopular decisions I have made recently

I feel like I am in the midst of a storm and nothing feels anchored in my life. In the past few months I have found myself struggling to get through a 24 hour period without feelings of panic. Some days are more successful than others. Between being unemployed and trying to figure out the direction I want my professional life to go in, I have been very depressed. This morning I decided to indulge my desire to sleep in and of course, my mind wakes up before my body does. It begins to think about things like Izzie ice skating, what I want to do with the rest of my life, and whether or not I can afford tickets to a fellow heart mom’s fundraiser. After 45 minutes of this, I get up and made myself a cup of coffee. Enough with the head spins. Let’s get this out.

1. Unpopular decision #1: I don’t want to enter my daughter into a contest showing the world her zipper by having her shirtless wearing a cape. 

Mended Little Hearts has begun their Rock Your Scar contest as a way to spread awareness for Congenital Heart Disease and to empower the CHDers who may have issues with their scars.  After much thought, I have decided not to enter my daughter in this contest. Right now, she thinks her scar is a big boo-boo and as much as Chris and I try to explain how awesome that boo-boo is, she knows it makes her different. All the more reason for her to show it off, you might say. No, not really. I don’t feel comfortable having her shirt off, wrapping a cape around her shoulders and taking her picture. She isn’t into her scar right now and if I want her to feel secure about her body I need to leave it alone. She trusts me. I am the one she calls out for when she needs to feel safe. I want her to feel like she has some control over her body and what happens to it, especially since for the first three years of her life people have been messing with it.

I also don’t want to ask people to vote for her. Already I have seen some of my heart friends posting their children’s pictures, and my gut reaction is that it is an unhealthy competition for me. I know where my head is at right now and yes, I will take it personally if people don’t vote for my Izzie; as if her scar and what she went through didn’t make her a winner. I don’t want to pit my daughter against others. Her scar and how she got it has given her a common bond with these children. Her health and how well she is doing makes her stand out enough as it is.

Here’s another reason why I don’t want to have her participate in this. Her sister has asked if she can have a heart defect so she can be in a commercial or have her picture in a calendar like Izzie. I don’t want to hurt Addie by giving Izzie another spotlight while she sits in the shadows wondering why her healthy heart isn’t broken. Sometimes we forget the impact this has on Addie, and I know she feels less important.

2. Unpopular decision #2: I want to treat Izzie like she is a normal preschooler so she doesn’t become The Girl With Half a Heart in her school.

I had to fight the overwhelming desire to let the instructors at the Ice Skating rink know that Izzie has a heart defect. I didn’t want them looking at her differently, or treating her differently, but what if she gets frostbite because she keeps putting her gloved hands on the ice? I had to step back and say to myself, Izzie needs to figure this out and learn on her own. She learned to stand up on her own without me. She didn’t get frostbite. She didn’t get a concussion. No one said anything about her purple lips or that her legs happen to go in directions that they shouldn’t due to her hypotonia. Instead, they smiled and said to me “Looks like you have a skater on your hands.” Chris and I made the decision a while ago to allow Izzie to be just like other kids. This doesn’t mean we don’t worry, it just means that sometimes, she doesn’t wear a helmet when she gets on her tricycle.

At the preschool, we have to let them know because it is part of her medical plan. They have learned to go with the flow and not stress when she comes in a little purple in the morning. They have learned that she warms up and is fine in a half hour. They also know that when she lies down, that is her way of taking a break and no one makes a big deal about it. I am so grateful for that. I stopped telling other parents what a little miracle she is and what we have been through. I realized one day that I was using Izzie’s medical condition to identify myself. I don’t want to do that.

Izzie has no idea what makes her slower than her sister. She doesn’t care right now. She smiles and laughs while running after her. “Look Mom….I’m RUNNING!” she yells as she chases Addie around the house. I fight the impulse to make her stop and breathe. How is she going to learn how to regulate herself if I am constantly doing it for her? So I stopped doing that. I stopped putting limitations on her. After ice skating, we are going to try swimming lessons in the spring along with soccer. If the soccer coach asks me what is up with her, I will tell him. But I am not going to tell him out my fears of something happening to her. I’m done living that way.

3. Unpopular decision #3: I will no longer be overly cautious (unless the circumstances dictate otherwise) and I will no longer allow CHD to define us as a family.

Having congenital heart disease is only one part of Izzie. Granted it is a big part, but it isn’t the whole part of who she is. I don’t want to be the mom who who allows her fears to make the decisions for her. Being vigilant with her care has paid off but now I feel that it is important to enjoy the life that we have. Her function is great, she has incredible levels of energy and is relatively healthy. Worrying about what can happen down the road will not benefit anyone. Worrying gives an illusion of control. If you worry about something, you can prepare yourself for the scenerio that you think will happen. I have found that life doesn’t work that way at all. I worry about stuff and then other things happen that I was completely unprepared for. All of that worrying kept me from enjoying the moments I was in. I was still caught off guard in spite of my ‘preparation’.

Don’t get me wrong, I enjoy being part of the Heartland. I love to support other families and enjoy doing so. I get so much out of talking with newly diagnosed parents and other moms about our experience. It reminds me of how I share my experience, strength and hope from the podium of Alcoholics Anonymous. But again, being an alcoholic is only part of my identity. It isn’t all of me. Just like being a heart mom is part of me, but not all. Chris isn’t just a heart dad, and my daughters aren’t just siblings. There are so many other things happening in our lives that go beyond the CHD world.

The decisions I have made recently and the direction my life has headed in have changed where I fit in. I no longer fit where I used to. Many of the moms I used to be connected with I no longer feel welcome around. Izzie’s heart defect is no longer enough for me to be connected.  It’s made me think about who I want to be and what kind of mom I want to be to my kids. Posting about the color of Izzie’s lips shouldn’t be a way for me to fit in. My faith, lifestyle and beliefs are what make me Elissa, and I cannot be anything else.

 

 

 

 

 

 

 

 

 

 

Confessions of a frustrated heart mom

In a few weeks, one of my favorite heart mom friends will be packing up, heading onto a plane and flying to Boston so her son can have surgery one more time. He will need a repair on a valve that was just repaired not too long ago. I know there is a misconception out there that surgery can cure congenital heart disease. This is a prime example of how wrong that is.

I have a confession. When I see the St. Jude ads on the television, I get angry. I get angry for my friends who have to spend so much to stay in Boston to receive the care their children need. I get pissed that in spite of the hundreds of deaths that happen on a regular basis from CHD, it’s cancer that everyone seems to know about. What about that mom who is saying goodbye to her son right now? Any disease that takes children away is terrible. All of them, not just cancer. When I see those ads I want to scream. At least those parents can have their children go to that hospital for free. There is no such hospital like that for cardiac families who outnumber cancer patient families by the hundreds. It sucks. It sucks that diseases have popularity contests and that the same one seems to be on top every time. Cancer “wins” with funding. It “wins” with an entire hospital. And it when it comes to awareness, more people think of cancer than any other disease out there.  I am not saying a sick child with a terrible disease is winning because I know it isn’t. I know way too many people who have lost children to cancer as well. Thank God there are places for them where they can be treated. Thank God some can be cured. I am saying  I want a place for my daughter too. I want celebrities to go on TV and say “CHDs kill hundreds of children every year and a fraction of money raised goes towards research on how to improve these childrens’ lives.”

Surgery has not cured Izzie. It has not allowed her to be able to run as fast as her sister. It has not allowed her to not turn purple when she is outside for longer than 10 minutes. It has allowed her to live, thrive and be with us, which is a miracle that I thank God for every day. However, I will always be looking over my shoulder to see if the monster is right behind me. Someday I would love not to worry about what could happen. I like to pretend I don’t care or that I try to live my life as if she were a normal child but I can’t. A cough is never just a cough, I have seen too many children all of sudden have to be admitted unexpectedly and a cold still terrifies me.

I find those posts that are supposed to spread awareness about a fatal illness like cancer insulting. I don’t want to see them. I will never repost them either. Don’t you dare tell me that I have never witnessed someone suffering from a fatal disease. I watched my daughter carried away to surgery three times. I have seen her scream her heart out without making a sound because a tube was down her throat. Those awareness posts make me crazy. I know how much people suffer from diseases like cancer. I may not say it but I know what Izzie has is considered fatal. She qualifies for Make-A-Wish because of this. Only 75% of children with HLHS make it to five years old. There is a reason for that. Because CHDs kill children as much as cancer does.

Here’s a question: Do you know how much families suffer with congenital heart disease???  Do you know what it is like to have every hope extinguished one by one? Do you know what it is like to wait for another family to lose their child so yours can live? Do you know what it is like to know how important it is for your child to gain weight because it is key to their survival yet they continually lose because their heart is working too hard? Have you ever heard me say something as ridiculous as “You probably don’t care and won’t repost this because you haven’t been touched by someone who has CHDs?”

Everyone knows someone who has had cancer. Not everyone knows someone who has had open heart surgery three times before they are three years old. When you understand what it feels like to stand for 12 hours trying to comfort your child who is terrified of every nurse that walks into a room while attached to tons of tubes and wires and who has not slept at all, then talk to me.

And trust me when I say that St. Jude has plenty to fund their operations. Plenty. Thankfully some of their experimental treatments can open doors for cardiac patients. Then I don’t feel so bad seeing the gold medalist snow boarder who was born with a CHD (Tetralogy of Fallot) advocate for them. I wish that children could be allowed to be children and not have to endure the hardships that sick ones do. I wish to God that this family who has fought so hard for their son didn’t have to say goodbye to him today.  But they do, please keep them in your prayers. They are one of many in the Heartland that will not have a merry christmas.

https://www.gofundme.com/gillythegreat

Thank you for reading.

Judgement Call

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.

When Geography Matters.

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?”
“No.”
“Can I get your tummy?”
“No.”
“Do you want to sing a song?”
“No.”
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.

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.