Sunday, November 19, 2017

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.

Wednesday, November 15, 2017

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.

Saturday, November 11, 2017

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.

Sunday, October 29, 2017

4th Birthday Party

Today we celebrated Tehilla's 4th birthday. Pictures will be at the bottom.

I really can't promise no tears. I remember those early days too well. When I watched over this little baby, hooked up to machines. Noises and beeps resounded in the room. Alarms went off which sometimes brought nurses running and sometimes stabilized on their own.

She was naked with a bandage over her chest and a diaper on. Nice heating lamps kept her comfortable and a blanket that I had received from Sisters by Heart was by her side at my insistence.

She had blue intense eyes that seemed to be speaking to me and no hair to speak of.

She could destabilize at any moment and be gone forever. I told myself, "She is here for now, but there's no telling what will be in the next moment. Don't dream of the future. Don't hope for tomorrow. Just pray right now."

And everyday she succeeded. Everyday she overcame. Everyday she grew stronger.

She came home and was unstable and fragile for 14 months. She survived. She developed. She achieved. I still told myself, "Don't dream. Don't think about the future. Live in today. Today is good."

She grew, she surpassed, she lived. I started to dream. I started to tell my inner voice to shut up, to let me believe in the future.

She's 4 years old. She can jump and skip and sing and count and drive us all crazy.

Let me tell you about the future, I never allowed myself to dream of. She will go to ballet classes next fall. She will get her ears pierced at age 5 1/2 because she pestered us to give in and not wait until she is 6. She will go to the same elementary school as her siblings and need to be taught to sit still and do her homework. She will be fierce and not allow herself to be bullied, but be kind and befriend the girl sitting by herself. She will scare the crap out of us while she learns to ride her bike and falls repeatedly. The same will happen when she insists on rollerblading with her big sister. She will demand a pet of her own because everyone else in the family has one and we will give in. She will continue to grow and succeed. She will be healthy and strong and perfectly- miraculously- normal.

That is the future that I can dream about.







Friday, October 27, 2017

Integration



We are very blessed with some very incredible aspects of the Israeli education system. Not all of it is perfect. In fact, there are some real challenges, but here is one situation when they get it right.


There is a strong drive for early intervention, in this country. There are systems built to monitor how kids are developing, such as Tipat Chalav (Well Baby Clinic), there are centers designed to help early age development with therapies, Hitpatchut Hayeled (Child Development Center) and then they have school integration programs.


This year, a new program has started where 6 children are selected from every preschool, to receive integrated therapy programs during school hours. It will help kids along that are otherwise lagging behind in occupational therapy, speech therapy and any other development challenge.


Without a blink of an eye, Tehilla's teacher asked for Tehilla to be one of the kids, given her long medical history and of course, without hesitation, I signed the papers.


I just met with Esther, her new integration teacher. She told me, "As soon as I saw Tehilla, I felt there was something special about her. She has such a drive for life and such a big heart."
I responded, "Her thirst for life is directly connected to her- not big heart, but her half a heart." Then I launched into a lengthy medical history.


Her teacher will be helping her push ahead and has also asked permission to do Shiatsu message on her to heal her trauma and help her blood pressure. Power to ya, Esther.


She begins on Sunday. In everything else, Tehilla is doing great and loving life to the fullest.


Shabbat Shalom!

Thursday, October 12, 2017

Sukkot

With the sukkah put away and the kids drifting off to sleep, I finally have time to share about how our holiday was. We spent every day creating memories and having the most loving family togetherness moments possible- and y'all know how valuable and meaningful family time is for us. 

This was the first year that we felt Tehilla was stable and strong enough to endure sleeping outdoors in the sukkah with Jerusalem cold nights. We all dragged our mattresses and as many blankets as we owned outside and had the most magical family filled glamping experiences possible. No one was left out- Sammy the puppy and Hunter the cat slept alongside (or sometimes on) us. 

And once again, we were reminded and thankful of the miracles G-d has gifted us. Of the truly blessed existence we have and how amazing it was to see our half hearted warrior princess roughing it in the elements. Her lips weren't even purple! A luxurious (for her) shade of pretty pink!

One evening, our rambunctious 4 year was - ahem- streaking through the sukkah, while I pleaded for some bare minimum clothing. I yelled, "Tehilla! You're turning a bit blue! Get some clothes on!" 

She shrugged her naughty little shoulders and yelled back, "So what! I don't want to! I'm fine!" 

I thought to myself, "You are...you are totally fine...what a miracle..." I still demanded some form of basic decency- miracle or not. 

We enjoyed a Shabbat of the entire extended family and a community BBQ. All 3 kids have spent the past 48 hours fighting a stomach bug, but they are improving. 

I'm sad this holiday has ended. It was an incredible experience and it left us all with some treasured memories. 

Now back to regular routines and the miracles of daily life. 







Sunday, October 1, 2017

4!

Today is not just the day that I became a mother with more kids than hands. It's not just the day that our family grew by one more. And it certainly is not a day just like any other.

Today is the day Tehilla was born. 4 years ago. It's the day that we all learnt what we were truly capable of. It's the day that changed everything in more ways than can be listed.

Most importantly it's the day we really truly understood how precious every single day is. That every day is the biggest gift and can't be wasted. It's when life stopped being mundane and became truly magical.

Tehilla, you taught me to believe in miracles. You brought the sparkle in to our life and haven't stopped throwing glitter everywhere- whether metaphorically or literally.

My sweet baby girl, you are 4. We are so blessed to be able to celebrate this day.

Tehilla has been walking over to anyone who will listen to tell them about her Frozen themed birthday party that we will be having after the holidays. She falls asleep at night, listing the food I should prepare, the decorations that need to be hung up and the people that need to be invited.



Happy birthday, Tehilla!