Tonight I heard about a woman who is sitting in the ICU at Mass General with her son. He was involved with a skateboarding accident leaving him in critical condition. I share a yoga class with this woman and tonight I sent all the positive vibes I could muster to her sitting with her son in that room.
I have been in a room like that, similar to many other moms and families I have gotten to know this past year. We have witnessed emergency surgeries, miraculous recoveries and devestating loss. We have walked through circles of doctors and nurses on our way back to see our baby connected to various monitors and medicines. I know exactly how that woman feels right now sitting in that room.
I hear other people talk about what we have gone through with a hint of wonder behind the question “How did you get through it?” I am always surprised at this question. You just do. You hold their hands, rub their heads and watch the monitors. You watch the heart rates, see the O2 sats and if they are on a ventilator, see how much they are breathing on their own. You watch and wait to see if there are any changes, any inclination that things are going down or up. I made myself available during rounds and insisted on participating regardless of my lack of a medical degree. Whatever was in front of us we did. Somehow you get the strength to do whatever is in front of you- changing a diaper amongst many wires, holding her hand as she sleeps or the hardest- wiping tears from her face as she cries silently because of the tube down her throat. It’s all hard. It’s not easy, but the gift is seeing how strong you really are at the other side.
After I was done with the poses and preparing for the final minutes of the class, I was asked to again send any positive energy to this woman and her family. We all were. And while I knew some people were silently praying for her son to get well, for her to have strength, for their family to get through the next day I knew what I was going to wish for her. I prayed that she would be able to close her eyes and not watch the monitors for a few minutes. To give herself a few minutes of not trying to ‘solve’ the riddle of what is happening to my child. To have peace without leaving the room.
One time I was watching the monitors and a nurse came in, busting me. She walked over and shut them off. “We can see her from the desk.” she winked at me and walked out. She knew that I needed her to shut them off because I couldn’t turn my eyes away. It never ceases to amaze me how God can do for us what we can’t do for ourselves- even turning off a monitor.
I also learned that I don’t own the corner on ICUs or serious medical conditions. I am not the only mother who has worried about whether or not her child would make it until the next day. There are many other people who are also going through similar scenes that may have nothing to do with heart disease. People get sick. They get hurt. I can be of service to them. I know what to ask for them. I know what they need and can give what I can.
I miss going to work. I miss getting up at 5:30 am, getting myself ready and heading out to Boston. I miss being part of a creative team and most of all, I miss doing what I really love. Please don’t misunderstand me- I love taking care of my girls. Being at home with them right now has been a blessing. But prior to March 27, I was a working mom who was doing her best to balance family and work responsibilities.
I miss the comparing notes I would do with my husband when we would talk about our workday. I feel so unproductive right now. And as I look through job boards I get more and more anxious that I won’t be able to find something comparable to what I was doing at Eaton Vance.
I loved Eaton Vance. I loved everything about it- the people, the type of assignments and most of all my group. Betrayal doesn’t even come close to how I feel about them now. Words cannot express what I feel about my situation now. I have done my best to try to move on and be positive but it gets harder and harder each day that I don’t hear back from headhunters, companies that I have applied to or even the freelance projects that I have volunteered for. The silence is deafening. The longer it stays silent, the more I am reminded of what a mistake I made for allowing myself to get so attached.
I keep reliving the final arguments. One of the statements that sticks in my mind from my former colleague is “You don’t even know what I am going through right now- between my mom, my car and school… I am going through so much.” Really. And having a child missing a complete side of her heart isn’t stressful at ALL. Thinking about whether we will get through another month without having to rush to the ER or whether or not she will make it to be enrolled in preschool or kindergarten isn’t stressful at ALL. Or my teenager who is having a hard time or the toddler-now-preschooler demanding our attention while we try to balance that precious attention between all three- no, that isn’t stressful whatsoever. What gets me is that she is still there. Her co-consiprator is still there. They both still have their jobs while I am trying to figure out how we are going to get through the summer with one income and three kids.
Sure, I could have said nothing and acted as if I had no idea that my colleagues were having an inappropriate relationship. I could have just stayed within my own lines. But I am me. I am Elissa. The part of me that constantly screams “But it’s not fair” won over common sense for about 5 seconds. Another way I try to make myself feel better is reminding myself that working with people who don’t want you around isn’t fun either. Better to know than to wonder if what is going on really is going on. The truth really set me free. Free and unemployed.
My thought process throughout the day goes something like this: “What is Isabelle’s life going to be like when she gets older? Is she going to have phantom leg pains like so many others? Will her liver give her trouble? The image I have of that adult Fontan patient haunts me. Maybe we should get rid of all the junk. Should we just eat all organic food and get rid salt altogether – oh wait- that will cause mutiny in my house. Plus, it’s more expensive so that won’t fly either. How are we going to afford groceries? Oh my god what if I can’t find anything and I will have to go back into retail and feel like I did before and I will never find anything as special as my job at EV- that will never happen again and no one will see what others at Eaton Vance saw in me- they will just see someone who knows powerpoint but I did so much more and I have so much to offer but nothing is happening- why, WHY didn’t I just leave things alone!” And then my brain switches to shall I garden or go to yoga class. ADD does work for me in circumstances like this but it can also cause me to hyper focus on things I can’t change like the past, for example.
Isabelle is doing awesome. She is growing and trying to crawl but her hips are still weak so her little legs ‘frog out’ behind her and she just sits there. It’s cute. It makes me smile in spite of how much I feel like a complete failure sometimes. My mom worked my whole life. She still does. She powered through my school years and made herself available as much as she could (which was amazing since she was involved in so much professionally). I admire how she took care of us while having a career that she is so highly respected in. I will never have that. I think that’s why I am having such a hard time with this because I am halfway through my life and I am back at square one.
Today, the gratitude list of I get to enjoy my girls, Isabelle is doing great and I am not sick with any life threatening diseases isn’t working. I feel like I failed my family and mostly myself. Today isn’t a good home day. The good news is I still have most of the day to turn it around.
Mother’s Day was spent driving from one place to another, being with various members of the family. Granted, the brunch was nice and I was happy for my sister-in-law on my niece’s first communion. What wasn’t fun was the screaming from my overtired three year old who is very opinionated about everything and lets everyone within a five mile radius know it. Liz plugs into her iPhone and Isabelle is just happy as always. It was a busy day.
For the most part, since her Glenn we have enjoyed a pretty normal life these days. With the exception of the g tube, we don’t have any additional medical care other than her visits to the cardiology and her monthly checkups at the pediatricians. She even eats like other babies and is finally in 9 month size clothing. But underneath it all, there is a sense that this can all change in a second.
My husband thought Isabelle would enjoy being in the bouncy castle my niece had at her communion party. She did enjoy it- had a blast sitting on the floor with her auntie and cousin. Chris sees her having a great time. I see what if she gets hurt. Now I know realistically we have to treat her like we treat Adeline and Liz. I can’t give in to the urge to snatch her up and coddle her to safety. Of course, I gave in. Walked over and snatched her up as her older cousin was trying really hard to restrain herself from bouncing her full potential at her mother’s request.
I pray I will get better with all of this. Maybe the videos we see online hit places in my consciousness I am not aware of. All I know is with each day our love for Izzie grows so much. She has become the light in our hearts. She makes everyone smile from the inside out. Full of joy and full of life. I don’t know why I can’t relax 100% yet. My hope is that with some time and venturing more out of my comfort zone will allow for me to loosen the reins a little.
Tomorrow I am taking her to a playgroup with other babies around her age. She is so funny watching the other ones play around the room. Last week I introduced us and told a little of our story. It’s awkward sometimes, telling about what we have gone through. I can see the horror on their faces as I talk about her open heart surgeries. I know they are trying to imagine what they would do in our shoes but they can’t. It’s not something anyone wants to have in their life.
Lately I have been viewing our experience as a blessing. The parent group helped a lot because as I listened to the ‘normal’ problems each one discussed, I kept thinking “Wow, it would be nice to just have to worry about bedtimes.” I appreciate all of those little hurdles because to me that is what they are: little. I know they seem huge to the parents going through them, but it beats seeing your child go through chest X-rays, painful blood draws and surgeries that require tubes be placed down their throats. What used to seem big now seems so little. I don’t repeat this to them, but judging from the expressions of a few people in that room after hearing our story, I think they know it.
Tomorrow it will be nice to hear those stories of normalcy. I am looking forward to it.
I get the most profound thoughts during my yoga practice. With each pose a whole new set of emotions come flooding through this ADD riddled brain of mine. I should write sooner after each class but tonight the evening was spent taking care of a feverish Isabelle, hyper Adeline and my profile on the headhunter site.
As I breezed through Facebook tonight I saw a bunch of comments on one of the pages I frequent. I haven’t said much on these pages lately, because to be honest- I feel as if people don’t want to respond to anything I comment on. There. I said it. I feel like the girl that you are embarrassed to know. And frankly, the whole clique atmosphere sucks especially in an environment that claims to be supportive. I posted a question, got some answers and that was enough for me today. However, on other mom’s posts- moms whom I admire and enjoy following – don’t exactly feel the same way about me. I know we can’t all be friends and sit in a circle but I would at least like to be a part of these discussions instead of being completely blown off. That being said, and since I apparently hav nothing to lose- I am going to move on to the subject of a video that as being discussed on this page.
The video was about adult single ventricle patients who have had the Fontan. The Fontan series of surgeries basically re-routes the circulation so the patient can survive. It is not ideal but it has brought many children to ages their parents couldn’t have dreamed of when first being told their baby had the most severe defect possible.
The cardiologist who was speaking during this video is someone I am not familiar with. I am sure he has credentials, etc. but he is treating a segment of the population as a whole. He isn’t seeing every Fontan patient that is out there. I listened and watched with my grains of salt.
I was aware of the liver damage that is very likely to happen. As he went through the dangers of salty snacks and processed foods, I chuckled to myself thinking about our bacon obsessed household. Then he went on to other complications, such as increased pressure in the ventricle, losing breath doing every day things. Not being able to enjoy an active lifestyle or even have children. How this all increases with each year the patient has Fontan circulation.
We knew there was a very good chance Isabelle would need a heart transplant eventually. Our cardiologist told us that the idea is for her to keep her anatomy for as long as possible, until her heart starts to wear out. Because according to this doctor, it most certainly will. My hope is that Dr. Emani will continue his work on trying to find a better solution for single ventricle / HLHS patients. The doctor in the video also mentioned that the longer a patient has a Fontan, the more likely he/she will have problems. WHich brings about the whole debate on when the third surgery should take place.
I have been very careful about what I say around this subject. People can read into what I am saying and claim that I am insinuating that they aren’t doing what they can for their children. Well, maybe they are right. Maybe part of me feels like I am being judged because we are having hers so early by other hospital standards. She will be a little over two years old. Maybe I do feel that what our cardiologist tells me is The Word and I don’t question it. I do have questions, and the age factor was a big one at our last visit.
Boston does not feel that delaying a Fontan is necessary. They claim that the data isn’t conclusive; that there is no benefit to delaying. As a matter of fact, I brought up some of the ages I was seeing on these pages and the response I received was “The fontan should be done before the child is four. It isn’t a good thing if it is delayed that long.” That is what I was told. And I believe that. I don’t question that- especially when I hear it from so many other cardiologists at BCH. And you can ask my husband- I bug everyone who comes into contact with us with questions abut this.
I want to know what I can do to save my daughter. Apparantly, one of the things is to make sure she eats healthy, organic foods that don’t have a lot of additives in them because those can be taxing on her already disadvantaged liver. Ok, got it. Another thing I can do is continually educate myself, ask questions and be proactive at every clinic visit. Believe me, I will bring this video up at our next visit. I’ll even have it up on the iPad.
My point is- and I know it isn’t a popular one- is that I need to enjoy every moment with Isabelle regardless of what her future brings. I cannot allow fear to suck me into an abyss of terror where I won’t enjoy anything including her giggles. Her smiles. Her joy at being alive. Call me crazy, but I think she enjoys being alive as if she knows what a gift she has been given. She laughs, smiles, loves to be with us and is just an all around happy baby. I can’t afford to worry about whether or not she will need a transplant for her heart or liver. I want to be here now. And yes, I believe the fontan should be done when the child is ready, not when the parent is. I know how scary this is but if she is showing signs of needing the next step you know I will be camping out in Fegan in the cardiology department. This isn’t about me. This is about her and what she needs. Dr. Levine thinks Fall 2014 is a great time to have a Fontan. I think she is right.
Oh- and I know I can be an abrasive, judgemental, outspoken person, but don’t think that I don’t pray for all of our children, cry with mothers who are watching their children lose their battle, or have my heart be lifted by seeing a child overcome great odds and thrive. I am still with you even if I don’t agree with you. And I will keep posting my thoughts and liking you photos whether you respond or not. I care about all of our children, and I have great respect for all heart parents.
CHDs take so much from families. One casualty is the attention we give to our other children. It has suffered under the weight of surgeries, recoveries, appointments, and what the next step is. We lose sight of other obligations and I know it has affected the other two girls. Elizabeth is mature enough to know it is for a good reason, but Adeline isn’t. She pushes our buttons every way she can to make sure we are paying attention. I know why she does it. Doesn’t lessen the frustration level at all but I do understand that it must be hard to go from being a center of attention to part of the chorus. Which is why we wanted to make this day so special.
Of course, it started out like a regular saturday with both of us threatening, frustrated and at our wits end by 10am. Then the bouncy house showed up. The balloons came. Decorations went up and she couldn’t wait to play with the Uniqua piñata we bought on clearance from iParty. Addie did her best to behave but the temptation to do what she wanted was too much, and so I heard the crinkle of the bag of Jax opening after I specifically said that she could not have them for breakfast.
Then came the moment when Isabelle decided to reach for something that was on the floor in front of the couch while she was on the couch, causing her to tumble off onto the floor. It took a while for her to stop crying. Thoughts like “Did her sternum break? Did she hit her head? Did that jostle her repair at all? Is she crying because she is frightened or is she in pain?”
Crisis averted. Back to prepping for tacos! She finally calmed down but didn’t want anyone else to hold her so I had to grow another set of arms to cut fruit, vegetables and prepare the taco shells. Awesome.
As people started to arrive Addie became more and more excited. People were there to see her and celebrate her. She loves being with both her nanas and papas. The novelty of having both sets at her house makes her happy. She points them out to everyone, and runs back and forth from the jumpy house to the house. The party lasted for hours. No one seemed to mind at all. Everyone was having a good time, enjoying themselves and celebrating.
I’m happy the party went well for Adeline. It has been a hard year for her. She has had to make many adjustments without understanding why. She just wants love. A bedtime story, some hugs and someone to play with. She deserved a fun day and we enjoyed making her happy. Today was a day all about her and she loved every minute.