Manchester and Leeds

Wednesday night, I spoke in Manchester and Thursday in Leeds.

There is always one or two interactions that always stay with me. This time it was Chaya in Manchester and Shira in Leeds.

After speaking, Chaya came up to me and let me know that as a med student, how much my words meant to her, that our story would always stay with her and she would never abuse her power as a doctor, like Dr. Big Nose.

Then there was Shira who is studying to be a medical clown and loved hearing about our interactions with medical clowns and how bringing a smile to a family stuck in the hospital can give the perfect relief to a hard situation and actually help recovery.

I'm brought in to speak to students to share our family's journey and inspire them. But it's situations like these that actually bring hope to me. Thank you, Genesis, for the wonderful experiences and all the good that you do!

And now, blog family, it's time to go home and spend Shabbat snuggling with my family!

Nottingham and Bristol

I arrived in London on Sunday night. I've been flown in by a program called Genesis. They provide programming for university students in England.

Monday, I was sent to Nottingham, where I gave my first speech. Yesterday, I went to Bristol.

I speak about our family's journey and what we have gone through. I also talk a lot about you, blog family, and all that you have done to support us and help us through out heart journey.

It's unusual to spend so much time reflecting on our life but it only reminds me of how truly blessed we are.

Today, I will be speaking to two different groups in Manchester.

London Here I Come!

So after being home for one week, I am now waiting to board my flight to London. I'll be all over the country during the next few days, speaking about our family's journey.

Tehilla's reaction when I said I was leaving again, "It was amazing when you were gone. It'll be great!" Thanks, kid. I'll miss you too.

See you all on the British side.

Cardiology Check-up

Everyone take a big sigh of relief.

Everything is fine. Her oxygen saturation is a little low at 83 but everything looks good. Thank G-d.

The big question is whether we should close the fenestration (the remaining hole) in her heart via catheter. It will raise her oxygen saturation once it is closed. And give her more energy. We joked that Dr. Golander has to work better on his marketing angle. We told him he should have told us that it would make her sleep through the night or stop throwing temper tantrums.

Ultimately the decision was made to not do it in winter as she will have a harder recovery and adjustment if she gets many colds and coughs as she is bound to do.

So we are waiting until the spring. In 6 months we will come for another check-up. If her winter was not ridden with lung infections than she will have a catheter in the spring and close the fenestration.

No surprises, everything stable and good and room to make decisions based on preference- so honestly that couldn't have gone better.

Everything All Together

Do you ever notice that life has this way of mushing and smushing and stomping everything all together. It's always a balancing act, always a high and a low, always a little of this, a sprinkle of that, and an avalanche of something else. That's where I am right now.

I had meant to post so many things, but there was something always more important. And now these two important things that I want to share and announce are completely overshadowed for me by what happened last week. So, very quickly, for those that won't read through everything else:

1) This Wednesday, Tehilla has her cardiology appointment. There are nerves and anxieties flying around, even though she has never been so stable. But every new appointment brings a possibility for bad news. So, we are praying this appointment brings only more good news of stability and easy sailing. Of course, I will update the blog.

2) I am flying next week to England. I have been asked again by Genesis to speak about our family's journey for the new year of students. I will be speaking at 4 or 5 university campuses in 5 days. I will blog about my experience, like I did in February.

Now, this...

In March, I took my kids to the US to visit my Grandma. Three years ago, Grandma was rushed to the hospital and diagnosed with a severe heart aneurysm. She was not given long to live and refused surgery at her age. She was told the best possible outcome was that she had 6 months to live.

At the time of this news, Tehilla was not even a year old. She was unstable, a terrible candidate for her Glenn surgery and was running out of options. Hearing about my Grandma's diagnosis was the most crushing devastating news and worse of all, because of Tehilla's situation, I had no chance to see her or bring the kids to see her. It broke my heart and hurt worse than I could ever explain. But it was what it was. So I resolved myself to calling her frequently, like I already was doing, Skyping with her and sending her frequent pictures of the kids.

But Grandma surpassed their prognosis. Maybe this is where Tehilla gets it from...who knows. G-d I hope she gets it from her and gets so much else from her. Grandma lived 3 years longer than she should have. At every doctor's visit, she was told that she was living on borrowed time.

This past March, Tehilla was stable and Grandma was sick and seemed to be taking a turn for the worst. Quickly, we booked tickets and I took all 3 kids to see her. She got to spend time with them and they with her. They got to experience the outpouring of love that only Grandma is capable of and they have lasting memories from that.


A week ago, Grandma's heart aneurysm tore and she was put on hospice care. She went home to the care of her children and grandchildren who fulfilled any little request short of visiting Atlantic City (while on hospice and a torn aneurysm) and a pastrami sandwich at 8:00 am. I booked a flight with the hope of seeing her one last time. But unfortunately, Grandma passed away last Saturday afternoon.

I was asked to speak at her funeral on behalf of my siblings, cousins, mother and aunt. I cried throughout the eulogy and don't have real memories of if my words properly conveyed who Grandma was. Truthfully, no amount of words can adequately describe the extreme love that out-poured from this woman. Her home emanated it as did her food. She was unnaturally kind and giving and just absolutely lovely. Everything about her.

Being at the funeral and helping my mother during shiva brought a certain form of closure. I stopped waiting for Grandma to walk out of her bedroom and check on everyone. Instead, with my siblings and cousins, we explored the adventures and relationships of Grandma's life by unpacking her photos and talking with distant relatives and her friends she traveled and played cards with.

I arrived home on Friday and feel the mourning with me. The advantage and disadvantage of coming back home is that my life is forcing me to move on. My kids need attending to, my clients need my attention and the fridge needs me to restock it. I wish I had more time to dedicate to just sitting and talking with everyone about Grandma, but life demands I don't. And I know, that Grandma would absolutely want it that way.

Grandma lived her life to the fullest. She told us that she was lucky to have truly loved two men in her life. She went on cruises and trips. She hosted for all the holidays and cooked the absolute most delicious food. She played bridge and poker with her friends. She had her hair done every week or two, as well as her nails. She went out once a week for lunch with my aunt and rented books and movies with my mother and had analytical discussions about it. She would talk politics and literature with her grandchildren.

I know Grandma would want to see us keep living, keep moving. And since I absolutely have no choice, I will. I feel her with me. I felt her presence on Shabbat. I wore one of her silk scarves. I heard her little sing-song voice saying, "Ooh, how lovely. You look beautiful (although she pronounced it bootiful)." The tears will slowly stop coming and I'll feel stronger soon.

May this week bring all that mourn her some calmness and hopefully a boring uneventful appointment for Tehilla.