Uncategorized

The Cottage

My favorite time of the year has always been the summer. School was over. I could go out and be with my friends, ride my bike and play at Stephen’s Field from sunrise to sundown. And of course, my father would pick up my sister and me for a 2 week excursion to the Cottage. 

The cottage was my grandfather Papa Bob Levin’s idea of paradise. My grandmother on the other hand wasn’t a big fan of not having running water and dreaded making the trip. She enjoyed the comforts of home and to her, it was simply torture to be in a shack with her rambunctious boys. Bob couldn’t wait to go and every year they would pack up and drive to Plymouth from their modest home in Weymouth. 

In order for her to stand living there, it was important for my Nana to have her cookware, dishes, glasses, coffee cups and furniture to match what they had in Weymouth. Much of her kitchen ware is still there sitting in the cupboards. The sofa looks very chic and retro with its matching beige club chairs, the coffee table and stools. Her scrabble board is still in its place on top of the bookshelf waiting to be played while the letters are sleeping in the crown royal bag next to it. 

My father would take us every year to stay for two weeks during the summer. I can’t remember which two weeks it was but I remember a few July 4ths there with the hippies next door lighting off God only knows what. In the morning, Laurie and I would find them with their heads stuck in the sand very much like the fireworks they had been lighting off all night. 

I loved every minute I have spent in those four walls. From smelling the pancakes my dad would make for us in the morning to how the sand felt around my toes in the afternoon sun. I can still hear my aunt Minna’s voice in my head “Wash your feet off before you step in the house!” Sometimes that would be a chorus when we were particularly rowdy. 

Much of my childhood was spent at that cottage. And when my childhood was over, my time there changed dramatically. I can’t blame my uncles for spending so much time there even though there isn’t any time for me anymore. Perhaps they feel the same way I do when they walk in after a long winter and spring. Maybe they get great joy  watching their grandchildren play in the sand where they played for days on end. I don’t know. What i do know is I miss it. I miss being able to wake up and smell the pond first thing in the morning. I miss hearing the peepers at night. I miss sharing these moments with my own girls and I know my cousins do too. They don’t get much time there either so it isn’t all me. 

There are many reasons on why my situation at the cottage has changed so much. Reasons I care not to get into and really don’t belong in this context. The reason I am writing this is to share that I brought isabelle there today to cool off in the water. She is really having a hard time in this heat which is making me increasingly more nervous about Florida next month. I wanted us to go for a swim without having to struggle with a long walk to sand while balancing a variety of luggage and chairs. 

And I wanted to share my favorite place with her. Because in spite of the limited times I have able to go down there, it truly is my favorite place in the world. And I never thought I would have the chance to bring her down, to be honest. I never thought I would see her sitting in the sand or putting her feet in the first body of water I ever stepped into. Tonight I am overwhelmed with how grateful I am for the opportunity to see her joy as she splashed her heart out. 

I am grateful for all my aunt’s efforts that have gone into making the cottage what it used to be. It went from being a place where hardly anyone would go to a place people fight over. I am happy that my cousins get to use it a little more this summer. There are very few places in my life that give me the happy memories that place does. There are even fewer places that connect me to my Levin family. The cottage connects me to all that was good in my father, when I felt loved by him and part of our family. Sharing that connection with her today was a blessing. ImageImageImageImageImage

Uncategorized

Happy Father’s Day

Today has always been a mixed bag for me. It hard to celebrate a day that recognizes good fathers when you have such a lousy one. At the same time, I have been fortunate enough to have had someone else who fit the bill very nicely to celebrate with. My mom remarried when I was two years old to a man she had known most of her life. They both grew up in Plymouth, attended the same synagogue (who didn’t back then?) and had children of their own. It was a match made in….Plymouth. It was not an easy transition to taking care of children they didn’t know for very long, and my sister and I still had our father in our lives at that time making things a tad more complicated. Or shall I say he made everything complicated. 

We would see our dad on weekends, school vacations, and over the summer but it wasn’t enough to build a relationship with a toddler who lived somewhere else. My stepfather stepped in when I missed out on father-daughter activities such as Celtics games, trips to the beach, and trick or treating. He was consistent. He was there. He didn’t sputter “I can’t handle this” turn around, and leave me at the door. 

Not saying that we didn’t have our moments but those were like scattered rain showers compared to the thunderstorms I would experience with my father. They always blew over. After my husband and I got married, he stepped into the shoes of being a stepfather. It’s still a challenge to him and I know there are many lines that he is reluctant to cross because her dad is still in her life albeit from a long distance. He does cross them and not once has he ever just walked away. 

When Isabelle was going through her first surgery, he sat next to my mother with me. When Addie was born he was one of the first people to see her and when Liz was born, he was getting a cataract removed but came as soon as he was able. I have pictures of him holding her with his dark glasses on, totally in love with her. My children are his grandchildren, there is no separation of who belongs to to whom. They all belong to their Papa. I love it. 

I commend any man who can step into someone else’s father shoes and be there for someone else’s child and making them their own. It’s one of the most difficult things to do but I know for me when Steve did that, it gave me something I would not have had if he walked away. I had an example of what life is supposed to be like with a dad because I had one. I hope Liz feels the same way someday. 

Chris does an amazing job with participating in her life. Last night when she needed a ride home he didn’t hesitate to go and get her. He is always at her events- concerts, shows and conferences. He has made doctors appointments, all her birthdays and is willing to teach her to drive. He has included her in his family, and she is one of 11 grandchildren on his side. He understands that her father is part of her life, but he is available for her anyway. His attitude is one of the things I love most about him. 

Over the years I have gone through phases of what to call Steve. I’ve called him Steve, Dad, step dad, and Papa. I know that technically I have three fathers- biological one, the one who signed my adoption papers, and the one who raised me. Today, I celebrate the one who raised me, my father in law who has been so good to me, and my husband who is an incredible, loving, doting father to all of my girls. Happy Father’s Day!

 

Boston Children's Hospital, Family, HLHS

M-I-C-K-E-Y…..

Yesterday we had our appointment with Dr. L in the GI dept on the 5th floor in Fegan at Boston Children’s. I was going by myself with Isabelle since Chris had a golf tournament and my mom was scheduled to pick up Liz and Addie. I haven’t made the trip to an appointment for Isabelle by myself before so this was going to be an adventure for us. And what an adventure it turned out to be.
It wasn’t supposed to be a long appointment. Looking back I realize how silly that was for me to assume because you know what they say about assuming things….ass= u+me. I packed the bag accordingly. A Red Sox onsie in case the long sleeve one was too hot, toys, puffs, diapers and a few packets of food in case she got hungry while we were there. No bottles. No milk. Nothing. No blankets or burp cloths. Short trip, nothing major.
After an uneventful trip in I was fortunate enough to find a tiny parking space that my husband would most surely have avoided if he was driving. Popped the trunk and took out the pink umbrella stroller, grabbed the bag and placed Izzie into the stroller. We were off!
It was pouring. The red Maclaren had the nice plastic covering that kept the passenger dry. That stroller was in the van. I had the Hyundai. Cursing myself for not having the foresight of needing the Maclaren, I scurried across the diagonal crossing towards the sidewalk getting my feet and ankles soaked in the process. Izzie kept trying to look at the raindrops and became startled when they splashed her face. This went on for 50 feet.
Getting into the revolving door at Children’s is always fun when there are slower, lost people in front of you trying to figure out what building to go to while inside the door. There is no map in the door. You have to go to the info desk which is inside. That requires you to take a few steps so we can all fit into the revolving slice of pie.
We get in and I make my way to the desk to get the parking validated. Very important to get the ticket validated. You save money and the parking magically becomes $9. My husband makes a beeline for it at every visit. It’s so important it comes before going to the bathroom. Yes, if you know my husband, then you get an idea of priorities here.
Forgetting I have the stroller I go to the stairs. Don’t ask. The bruins were on until after midnight the night before. Lets just say my thinking cap was back in the car in the tiny space. Elevator it is. Take a left, follow the fish. Fish is the symbol for Fegan, which is out destination. At the elevators there appears to be quite a crowd. Miraculously we fit and wait to arrive at the 5th floor.
During this whole time I am giving Izzie a play by play of what we are doing and what’s next including (in a singsong voice) “We’re checking in…then we need to change the diap…” La la la. The gentleman sitting behind the desk stops me. “You don’t need to check in. Is this Isabelle?” Wow. Recognized! Why yes, it is. Date of birth? 8/1/2012. Yes I will have a seat over here after we have a little costume change. Thank you.
I literally step out of the bathroom and we are escorted to get height and weight. The nurse keeps telling me how cute she is while Isabelle smiles and claps. I get her undressed and place her on the scale. She is up to 16 pounds 10 oz. I can’t help but smile and move to pick her up. I can’t. She’s peeing. All over the scale. There must have been a half inch of water on the thing. The nurse laughs and tells me she has seen it all. Well hey, at least she didn’t poop, right? She didn’t.
After a good wipe down and a change of paper, we get the height. She is over 26 inches. Again, I kvell. She’s growing. Woohoo!
Once again we get dressed and wait out in the Festival of Potential germs waiting room. Within 5 minutes we were brought to the room where’s we waited for Dr. L. For almost 90 minutes. During that time we played peekaboo, shook the can of Puffs, ate puffs, and had one of the food packets. The nurse came in after an hour and assured me the doctor would be coming in but until she does, how about I tell her a little of what has been going on?
I never like doing is because it always require me to repeat myself word for word when the doctor does in fact arrive but hey- it’s not like I am doing anything else. I show her the site of the tube. It looks gross. I had no idea it looked like that and stammered that it didn’t look like that this morning. The nurse smiles and then tells me that I have the tube secured too tightly. Ah yes. I do make an arch as we had been instructed but SOMEONE like to pull her tube me if it is a toy just for her. I immediately understand what moms of boys go through.
Dr. L comes in and of course I have to repeat the story but that’s ok. We decide that a Mickey button is the best course of action and yes, no dairy since she apparently still has a level of sensitivity. That comes into play later in the story. Perhaps when the breast milk is all gone we can try almond milk, rice milk and maybe soy milk but there is a chance she could vomit that up so maybe not. Lets have scheduling call you after Dr. Levine has been consulted. Great! How about a teaching on how the button is used? Sure, why not? We would only be sitting in traffic anyway so what the heck? Oh wait- it is already 5 and her bottle is scheduled for 6. And she last had one at 1:30….crap.
Consulted with the husband and we both agreed that perhaps CVS had some formula that I could give her in the interim and maybe the solids. Made the trek to the CVS and didn’t see the formula until I got to the counter with the generic pedialyte and Nubi bottle that she has never used before. Hmmm…Good start has a small size we could try. It as the only formula Addie took after I couldn’t pump anymore. Let’s do it! A swipe of the ATM card and off to the cafeteria we went.
Whenever we are inpatient, I am obsessed with BCHs chicken tenders. Love those tenders. I don’t know why but I do. So of course I order those and what’s that? Yes, fries would be lovely! I already have water so no need for a drink. We head over to a table and I make the bottle. She loves it. Ok, maybe not loves but she was hungry (thirsty?) and cried when I would check to see if she was actually drinking it. The chicken was delicious. I saw parents walk by that I have seen here before. I want to say hello but they have the look of exhaustion so I don’t say anything.
Because the bottle isn’t like what we normally use she doesn’t drink as much as I thought and we try again. She falls asleep. Now? We have a long car ride and you decide to sleep now? Consult again with husband, pay for parking and off we go. The machine doesn’t take my $9 ticket. She has woken up and isn’t happy. Damn it! I press the call for assistance button. The attendant can only help me exit, not help me get home with an unhappy baby. W make it to the on ramp by South Hampton street. I hear her make a cough. No way.
The next sound I hear is not a pleasant one. Heaving in between cries and splashes (yes, it was that hard), she is covered with Good Smart. I’m two lanes over from where I should be to get off the expressway. Of course no one can see what is happening and no one feels the need to allow me to pass regardless of my various expressions of “Are you freaking serious??”
As soon as I get into a spot in the first parking lot I reach I row it into park, jump out and race around to the other side. The car seat is completely covered along with the baby who is crying hysterically right now. II immediately unsnap everything and take off her clothes. I bring her to the front seat and get her into the one clean piece of clothing I brought with me- the Red Sox onsie. There’s a Target! W can run into Target and I will get blankets and an outfit for her to ride home in. I placed her. Back into the car seat on top of her sisters T ball shirt. She shrieks.
No one will allow me to park. Everyone feels the need to jump in front of the Sonata to prove the point that pedestrians rule regardless of a puke covered screaming baby. We race in to what appears to be a third world version of Target. Yikes. And to think I left my revolver back home.
I find what we need, checkout, and dress her in the ladies room.
From exit 18 to Exit 9, she screamed. I even pulled over a few times and could not console her. Finally after two hours we are home and the husband comes out to grab he seat. He knew he had to be outside when the car pulled up after the “Don’t EVER do this to me AGAIN” phone call. He even had a bottle ready. All was right in the world. I was exhausted. Just another day in paradise.

Family, HLHS

Enjoying the Moments

Yesterday afternoon we had a yogurt catastrophe. Following my pediatrician’s advice I gave Isabelle another flavor of yogurt to try in case the blueberries were the issue. Good news for the blueberries: it wasn’t them. Almost two hours after consuming the yogurt, she made quite a mess on her poor Daddy’s lap without warning. There was little doubt over the cause of the disruption.
So even though we have made some progress with bringing dairy back into the breast milk, we have not made very much progress in adding dairy into her table food menu. I think we are going to wait until she is a year old before we give her anything like that again! Or at least until we can find some drop cloths we can place all over the living room.
In the morning Chris and I got some much needed alone time without children. We participated in a golf tournament to raise money for a halfway house in Plymouth. I played terribly but it didn’t matter to me (until I started losing balls) because I was enjoying it so much. My mother understood how much we needed a break and watched the girls for us. It had rained all morning, the ground was like a dirty sponge and the course was a tad claustrophobic but it was worth every second.
We need breaks like that. It helps us retain some sanity from the daily craziness of our lives. My grandparents would have been in the floor if they saw how I played yesterday. I made a few good shots but I know my swing could use a lot of work and my putting skills suck. I miss them. Golf brings them back into my life for 18 holes.
Addie and Isabelle played with the water table while we were contemplating what to have for dinner. I loved watching them interact with each other- Addie showing her what to do and Isabelle just loving being with her. Moments like that make the CHD part of our lives fade a little. It allows me to enjoy my girls without worrying. Although, I think I may have to worry about Addie’s plans for taking over the world with her new accomplice. It was great to have more normalcy. I know these moments don’t happen for everyone so I relish the ones that happen here. At least until Addie wets her pants after we asked her if she needed to go potty 5 minutes earlier.

Uncategorized

Little Hearts, Big Hearts

This weekend has been incredible. Friday night we celebrated Isabelle receiving her Hebrew name of Yisraela Emunah with our families. Saturday we had fun watching Addie learn to swim and we had our first road trip of the summer going to the Little Hearts Picnic in Connecticut. This was out first time attending the picnic so we had no idea what to expect or even what to pack! It was very exciting for me to meet other parents and CHD families, but even more thrilling to meet fellow HLHS families and their remarkable children. 

We met a young man who just graduated from BU, and who enjoyed a cold beer while laughing by the pool. When I asked about limitations he said he had more trouble with caffiene than alcohol! Another family I had connected on Facebook with arrived at the hotel shortly after us and we met at the pool. We met the founder of the group at a pizza place down the street from where we were staying. She told me about her teenage HLHSer and introduced us to her family. I loved every minute of it. Here was a group of people who lived with HLHS, had the surgeries and were enjoying life. I met a few more HLHS families at the pool and their amazing kids. 

The pool was ridiculously crowded and we found ourselves dodging random elbows and feet trying to help Adeline and Isabelle play in the water. I loved that no one was staring at her PEG tube. No one was asking in a “whatthefuckisthat” voice “What is THAT?” when her tube would float out from her bathing suit. No one stared at her scar. No one asked me why she was so little for being 10 months. Everyone was too busy enjoying each others company and comparing stories of the year’s events. The kids were running circles around us, swimming and having a blast. The whole area filled with laughter and happy conversation. 

When we got to the picnic we weren’t sure what to expect. People had told us about some of the activities but I wasn’t prepared for how well everything was organized. Forgive me, but I have done many road races and large events can be absolute chaos! We checked in, got our name tags and everyone knew we were newbies by the stars on our nametags. We had our picture taken and then went off to the designated HLHS meeting place. As I placed the diaper bag down to claim a picnic table in the name of France, I saw a robust young man talking with some of the parents I had met the night before. I later found out that this young man had HLHS, was born in 1988 and had his Norwood done by Dr. Norwood himself. He looked amazing. I could not believe that this guy had the same defect as Isabelle and if he didn’t have the nametag on I would have had no idea he had HLHS. 

Speaking with the parents who had teen HLHSers gave me insight on how far medical practice dealing with this CHD has changed. None of these parents were sent home with a scale, binder or a pulse-ox machine. In fact, when I mentioned what our Interstage life was like, one father said to me “You had to weigh her every single day? We just had nurse come once a week- you must have gone crazy!” And while he was saying that I was thinking “Oh my God- you guys had nothing- that is crazy!” 

And then it hit me. These parents didn’t let worry take over their lives. They weren’t driven mad by scales, weight gains or sat levels. Their children rode on rides in Disney, they let them play sports, they let them reach for the stars. They didn’t let their fears affect their children and I saw the results running around the pool with careless abandon. When I ran into a fellow Boston mom (and friend) at the picnic with her son who had his Fontan last summer, I relayed my experience while watching her son run around her in his excitement. It was 90 degrees and he was buzzing around like a blond bee on a mission. Another view on what our future could be like. 

As I thought about the families who are having their Fontans this summer, I looked at the young adults in front of me full of promise. I wished other moms could see what I had seen today. Robust, healthy HLHS young adults enjoying life. Happy. With college degrees and plans for the future. We can have these things, this life without limits. Obviously, Isabelle will have certain limitations, but from what I saw- these kids didn’t appear to be held back by them. 

Look, I know the surgeries our babies and children go through are terrifying. There will always be the underlying fear of losing our most precious ones. I am sure I will be wreck myself when the time comes. When it does, I want to pull a photo up of one of these amazing kids and breathe in a little hope.

Normally I would end here at that last statement but I saw something on one of the Heart Mamas pages that really got to me today.

Someone posted a nice thought about God and how her child’s heart was created by Him special, as if she were a high end car that needed a special part to make that automobile special. It was a nice train of thought about making sense of something that doesn’t. What I didn’t appreciate was someone’s comment on how most CHD kids are born into Christian families, because of this nice Creationism view on how a child received the CHD that they had. Do I need to start posting “Hey! There are some Jewish heart moms that love their children too!” Or shall I post “Yes, that’s right- Christians really are the only people compassionate enough to take care of special needs children. I have no idea what I am doing with mine.” It is infuriating to constantly feel that because you are not Christian, you don’t have the same appreciation for life that someone who is Christian would. Newsflash- IT’S NOT TRUE. Many people of various faiths care about human life. Get out of your narrow mind and try to think that perhaps you don’t sound loving when you tell people that you are so much better than everyone else. And what gets me is that this is on a Heart page. A page created to support other Heart moms, and I am getting told that because I don’t believe that Jesus was the son of God, I don’t have any sanctity for life. Awesome. It still won’t ruin the wonderful day I had with other people who appreciate life as much as I do.