Home is where your cake is

Last year I turned 40 at Boston Children’s hospital waiting for Isabelle to gain a few ounces. A few weeks earlier we had planned for a party to take place that weekend but when we had to be admitted due to Isabelle’s feeding issues we cancelled. I tried to keep my spirits up in spite of missing out on a milestone and was grateful that we weren’t inpatient for anything worse. The morning of my birthday I checked my phone and saw the happy birthday posts appear one by one on my Facebook page.
I can’t express what that felt like- to see so many well wishes while being at such an unpleasant place. My husband did a great job in helping me celebrate by taking me out to dinner and ice cream. Our awesome roommates gave me a card and a key chain, which I use all the time. It wasn’t all that bad. Everyone eventually made it home later that week.

This year, I am jobless but Isabelle is doing great. We went apple picking yesterday and the night before Chris took me out to an incredible restaurant for my type of meal. My contracts are good and steady even if the employment isn’t. I’m glad I am working somewhere even if it is for another three weeks.

Birthdays have always been weird to me. I like celebrating because hey- who doesn’t like cake? At the same time, it marks a painful occasion for someone out there I probably will never meet. Every year I think of her and what she went through that day to have me. And then I also think of what she went through when she had to give me away. I celebrate with my family because that day was a joyous one for them, when they received a phone call that I had arrived.

Patricia made quite a sacrifice for me. I always give thanks on my birthday to her. Tonight when I have cake with my loved ones I will keep her into heart because without her selflessness, I would not be here.

This year has taught us that birthdays are special. Isabelle got to celebrate one when I was so afraid she wouldn’t get the chance. They aren’t to be taken for granted and there were so many who didn’t get that chance. I was given a chance to have a good life with a good family. Can’t think of a better present than that!

Family, HLHS, Work (or lack thereof)

Sleepless In the ‘Hood

The past few nights we have not had much sleep at all. Chris sleeps less than me since he tends to get up quicker when Isabelle sounds the alarm. For some reason, either Izzie or Adeline have had issues with sleeping this week. I am exhausted. I can see that my patience is worn away by the lack of sleep. I am starting to worry that Isabelle is waking up and is relying on us to get her back to sleep instead of soothing herself because she is in our room. But what’s the alternative? The Room of the hyperactive one. Not a good combination and I was hoping both would be ready by now but between Addie not wanting to go to bed at all and Izzie’s need for a bottle at 1am, it does not look like it will happen anytime soon.

I need sleep. My personality is such that I take everything personally when I am overtired. I beat myself up more when I am tired. I doubt myself and everything I stand for when I am tired. For example, I found out that I didn’t get the job I was hoping for today. My client sent me changes for some work I have using the phrase ‘we want it to look as professional as possible.’ Did I use the chalkboard font on the piece or something? I didn’t use enough bullet points. Right. My favorite part of the day came when the recruiter tried to make not being selected sound better by telling me that the company I interviewed with thought I was very talented. Right now, it feels like no one thinks I am talented. Not my relatives, not my peers and most of all – myself. I feel like a full time job is escaping my grasp more and more every day and there is nothing I can do about it. What makes it even worse is that where I am contracting now, the office is right around the corner from Eaton Vance. I ran into a former colleague at a salad place yesterday. He didn’t even know I was gone. Don’t even get me started about that. It hurts to look at the building.

My exhaustion tells me that I deserve what I get, that I am not a nice person and that no one wants to hire me. I would love to say that I know better, and I know much of this is in my head, but it doesn’t lighten the feelings in my heart or give me a sense of comfort. It tells me I have so much work to do inside to feel better. It tells me that some things will need to change in order for my situation to improve, and that I need a nap.

Isabelle may have a cold. What is normal for every other baby out there can wreak havoc on an HLHS baby. I am praying this passes and she stops vomiting after coughing too much. Two days in a row we have had to wash her up in the tub. Not pretty. And I am sure she is exhausted too, which doesn’t help either. I don’t get as scared as I did last year, but it still unnerves me a bit because I have no control over a virus. A year ago we were inpatient. I celebrated my birthday with Chris, Isabelle, our nurse, and our awesome roommates. Chris did everything to make me feel special in spite of how nervous we were about Izzie, and how separated we were from our family. It was a hard time, and I keep trying to remind myself that this year is better because we are out of the hospital. And then I hear that voice that says “At least you had a job to go back to then.” I hope that voice quiets into silence someday. I am tired of hearing it.


A Promise

Today was the first day of Rosh Hashana, the Jewish New Year and it certainly went off with a bang. On my way to drop Isabelle off at her Nana’s, I turned too soon and caught my right rear tire on the brick wall that runs parallel down the driveway. The car jerked and I instantly knew I had either hit the wall or the curb. After viewing the blown tire and its gaping hole I hysterically called my husband.
I had plans. I was going to drop Izzie off, attend an open house at Addie’s preschool and then head to services for the holiday. My parents ended up picking Liz and I up, dropping me off at the school and I walked to services after the Open house. No big deal. I was happy that I was able make part of it considering.
Services for the holiday are really long. They can be up to 3 hours if the Rabbi isn’t paying attention and today was no exception. This was my first High Holy Day that I was going to be observing since Isabelle was born. Last year at this time we were in lock down. Thinking of how angry I was at God a year ago and in spite of that anger, what a miracle Isabelle has turned out to be made me well up unexpectedly. In spite of that, she is still here. With us. Wow.
The sermon today was about a promise and the environment. Don’t ask- I too felt that it was a stretch but I liked the promise piece so I am focusing on that. The Torah portions we go over during Rosh Hashanah are the story of Issac and his family. Basically, Abraham had two wives. Or was it a wife and a concubine who gave him a son. He had two women- one childless whom he was bound to, and the other who was a servant but a fertile one at that. His first wife was worried about a promise that was given to them about her sons future. She wanted him to kick the other woman to the curb. He did, and she wandered about with her boy until they were both dying of thirst. The second wife was scared that her promise that was given to her about her sons future wasn’t going to happen. Both mothers scared and having little faith even though the promises had been made by credible angels, acted out of desperation.
I thought about what we have been promised with Isabelle’s Fontan. If she makes it through the first surgery, the chances were higher she could get through the second. If she got through the second, than she can get through the third. After the Fontan is done, she will be ok and we could go for years without another surgery. She could have a normal life for a while. That is one promise. The other promise is science could come up with a better treatment than these surgeries. They are considered palliative – they are not a cure for HLHS. Who knows what advancements could come out in her lifetime? As I sat in the sanctuary of this beautiful church (that’s another story), I wondered if I could accept those promises and hope science could be where I need it to be. That would require faith. Here’s the thing- an angel didn’t pass the message on from God. The promise wasn’t followed by a burning bush or anything. It was given by a doctor in a white coat who saw many of these children on a daily basis. It’s scary to put all your faith eggs into one basket. If I am to have any kind of sanity, I have to accept them. A promise is a promise.


First days, new beginnings

The night before the first day of school was always a tough one for me. I was so full of excitement mixed with terror I couldn’t close my eyes. One year I was awake until 2AM. The anxiety of who was going to make fun of me extinguished the excitement I had about meeting up with friends after the summer. I kept seeing the faces of people from the year before, laughing at me, finding some flaw in what I was wearing or some other social faux pas I must have done. My stomach would be in knots as I lay there, listening to the Joshua Tree on my Walkman for the millionth time. 

When I would see someone I knew, it would be like getting a life preserver thrown to me while I was drowning in anxiety. They appeared happy to see me, I could talk about my summer and feel a little more at ease. My chest would lighten. I could actually feel ok. 

People always wonder how and why I remember the littlest details about our times in school. Whether it is what someone was wearing when they presented a project, or where they sat in my 7th grade homeroom (Derek Gorman in front, Brian Hammond behind me, Linda Maloof, Tammy Collins and Stephanie sat in the back with Lisa Coveney and Summer Bucholz to their right.) I remember these things because it was those moments of connection I would have with my peers that helped me through my ADHD anxiety-riddled brain. 

I have heard from people that they had no idea how much I struggled inside. Personally, I wear everything on my sleeve and would have made a terrible poker player but hey- if you don’t remember me this way than maybe I was a better actress than I thought! I could have made the cast of the last Boston Globe drama festival piece I was involved with. And then I think, did I really want to be linked to anything called “Sand Bags?”. Yeah. Dodged a bullet with that one.

My point is that the first day of school for many kids is a mixed bag. It’s exciting, you get to see friends you haven’t seen in three months, and you get to wear some new cool outfits that make you feel like you stepped out of Seventeen magazine. And then there’s the comment, joke at your expense, or worse- no one seems to want to talk to you. Thinking about it makes my stomach sink as I type this. A new outfit can become a clown suit in seconds and you never wear it again. In spite of how happy you were when you got dressed that morning, it stayed in your closet. 

Adeline is starting her first day of preschool this week. Elizabeth has her first day of her Junior year tomorrow. I hope that she is happy in spite of any anxiety she may feel on the bus ride in tomorrow morning. My hope is that as her day goes along, she is welcomed by friends and has a great day. I pray that Adeline has a happy school experience in a school that I still love walking into after 30 years. And as I am sure many of you know, once they are in school, time only flies by so much faster.

Which brings me to Isabelle- my perpetual baby. She doesn’t seem like a toddler at all. She still cuddles like a baby and has yet to take any steps on her own. Time has slowed down for her and I don’t mind at all. It doesn’t bother me that she still wears 9 Month sizes and she would rather play with a sippy cup than drink out of one. Her smiles and joy are enough for me. I am so grateful I can enjoy every minute of them.