You're Invited

There are so many things that need to be blogged about. And the simplest answer that I can provide right now for any question is: It's complicated. I have plans to blog again and catch everyone up. And I hope that I get to write those posts. But for now, there is something big and magical to share.

Before this blog was published, sat a very frightened couple in a doctor's office. They had already been encouraged to end the pregnancy of their third child and they were confused, saddened and very frightened. A wonderfully kind doctor explained to them that from that point in the pregnancy, at 21 weeks, their baby had a 45% chance of surviving over the age of 5. They were told that if she did, she could live a relatively normal life.

That couple were embraced and loved by so many and thousands watched as little baby Tehilla survived. You all held a collective breath with us, for the first traumatic 6 months of her life and you all chuckled with our stories of her feisty-ness as she grew. You sent pictures, prayed, baked challah, sent her little gifts and wrote encouraging messages throughout her 4 open heart surgeries. You were there during the hardest moments and rejoiced with us as we all watched miracles happen before our eyes.

That little miracle is turning 5. And as magical as the unicorns that she adores, Tehilla has survived, thrived and sparkled. Her turning 5 was never a given. It was a goal that seemed unattainable for so long. It's a huge milestone in her heart journey and there is no other way that we can reach this stage, than by thanking G-d.

We are throwing her a unicorn themed 5th birthday party. And we are inviting each and every one of you. It will be a mesibat hodaya to praise and thank G-d. It wouldn't be right to celebrate, without extending the invitation to our blog family.

The party is on Friday, September 28, 1-3:30 pm at our home.

Please click on the link below or email/message us for the details:


Mesibat Hodaya

We hope you will be able to join us!

Pause: Some Explanations

Back in the days of continuous blogging about Tehilla...

On occasion, we would be on a casual outing and someone would recognize Tehilla's miraculous face. Someone familiar or a new face who unknowingly was deeply connected to us as a member of our blog family. After casual conversation, often we would get asked, "So...what is going on with you- I mean- other than what you post on the blog?"

I thought it was a funny question. I'm pretty sure that I opened up my life to the world, sharing our deepest painful moments and our greatest magical times. And ear infections and teething issues. What more was there to tell?

Of course, there always is more. The pauses in between those posts. The mundane life routines. And the side stories that weren't always written about.

People react differently to life's ups and downs, so it isn't always easy to read a situation. This blog has been crucial for helping heart families, especially newly diagnosed families. It brought together people from every corner of the world to pray for our heart warrior princess. And now...it's making waves against the stigma of mental health. I've heard from so many people how they are gaining a deeper understanding, seeking help for family members, or feeling supported reading about a family experiencing something similar.

No worries. This blog isn't going anywhere. I have more to write.

The easiest way to explain my lack of blogging for the past two months is to explain how to read between the posts. My personality is that when we are going through something tough- no, not tough- something painfully challenging, I post less and less on Facebook, Instagram or this blog. The times when catching my breath is hard, when I'm doing all that I can to keep my head above water, I can't possibly post.

I'm breathing a bit better now. I'm able to plant my feet firmly on the ground, find my voice and find the positivity all around me.

I've got more parts to write about, and as my footing continues to grow stronger, I'll be picking up where I left off. This story has taken some very sharp turns, which I will blog about when I am ready.

For now, all of your love and support always means so much to us.

Part 10: The Cha-cha

(Apologies in advance to the dance aficionados)

Progressing with anxiety is like a dance step called the "cha-cha". Before even moving towards the dance floor, you need a basic level of security, self-esteem and motivation. Once you are ready, you take a step forward with your right foot, take a step back with your left foot, and then once again step forward with your right foot. From this basic description of the "cha-cha", it would sound like you haven't moved anywhere. But if you look closely at the dancer's feet, you realize there was a little inching forward. And when you stand back to watch the dance, you quickly realize that the dancer is moving across the dance floor. But without that step back, the dancer cannot push themselves forward.

Tzviel and his mother went to visit his class at school. It had been 6 weeks, since he had worked up enough stamina to walk through the school gate, up the stairs and into his classroom. 6 weeks since he had seen his friends. Because 8 year olds (and often many grown-ups) have a limited understanding of mental health issues, the class had been told that Tzviel had a kind of virus that took a long time for his body to recover from. That his body was still building up strength and Tzviel would be coming back to school at a slow pace.

Tzviel smiled big when he walked into class. His 32 classmates ran up to him and hugged him and embraced him and called out, "Tzviel! We missed you!" "I'm so glad you're better!". The teacher instructed them to sing a song for him, and Tzviel felt amazing. Tzviel went to say hello and shake hands with the principal and after 15 minutes, they returned to the car and drove home.

That night, Tzviel's family celebrated his step forward, his "success", with donuts and a lot praise from his family. They all understood what it meant for Tzviel to take this step forward. That night, Tzviel suffered the worst stomach problems. His anxiety kept him awake until 3:00am.

His parents recognized and anticipated the step back in Tzviel's anxiety "cha-cha". They reassured him and let him know that they were all there to support him. That he was safe. They let him know that when he was ready, they would be waiting to help him take that third step of the "cha-cha"- the step forward.

Sure enough, two days later, Tzviel asked if he could go back to school and spend a recess with his friends. That night, Tzviel suffered stomach problems and insomnia, but in a slightly lesser degree. His family applauded his success and let him know that it was up to him when he'd like to go back. They suggested maybe a lesson with his homeroom teacher who he loved. He was happy with that suggestion and asked to do it the next day. He then became hesitant. "Ima, what if my anxiety is too much? What if it's too hard? I want to. I really do. But I'm a bit scared." His mother answered, "Tzviel, I will sit outside the classroom the entire time. If you feel your anxiety building up, you can come out to me and we will work on it together or if it's too much, we can go home. I'll explain to your teacher."

Tzviel relaxed and was happy knowing that he would be safe with his "cha-cha" step forward.

Tehilla Interruption

We interrupt the scheduled broadcast...

Tehilla went for a check-up at the cardiologist today. It was supposed to be scheduled for around now, and since we are traveling to the USA in two weeks, it needed to be taken care of now.

Tehilla was not happy about being back in her old stomping ground. She cried through her echo and only laughed when we showed her how the more she screamed, the more colors showed up on the screen.

But thank G-d, he heart looks completely fine and stable. Her blood pressure was elavated, presumably because of her fear of the hospital. We are still pushing off closing the fenestration in her heart until her pressures look a bit better.

Thank G-d.

Part 9: Homecare and Homeschool

Tzviel was at home with a homeschooling schedule for all his classes and a government appointed teacher that came twice a week to help him. He could now breath easier and everyone could work on helping his anxiety.

After taking a break from the first medication, Tzviel's parents held their breath with the second medication. They watched nervously waiting for the worst to happen. But it didn't.

Tzviel's new medication gradually started to show clear signs of helping. A lot of exercise was added into his schedule to help him break down his anxiety. Tzviel's parents were completely astonished by how much his anxiety was reducing and how much he was able to handle things. He was sleeping better and functioning beautifully. He was able to work through his anxiety using the CBT methods he had learned and started to open up in some of the most unexpected ways.

Tzviel's parents called a meeting at the school with the principal, his homeroom teacher and the guidance counselor. They came armed to that meeting with letters from all of Tzviel's past and present doctors and therapists. They also brought along their CBT therapist.

Tzviel's parents once again detailed his medical history, this time with signed and stamped letters proving a medical team was in place, detailing everything they had already explained. Tzviel's therapist explained in detail how anxiety in children appears and the behaviors they were seeing.

The guidance counselor insisted repeatedly that Tzviel not be on medication, insinuated that there was some other underlying cause for his behavior and demanded acknowledgment for her own masters degree. Tzviel's therapist repeatedly explained the necessity of his medications and of the extensive work she had done with the whole family.

Finally, the principal interrupted and said, "It is not our job to diagnose him. These letters show that there are doctors in place to do that. We will take our cues from Tzviel's parents of how to progress and we wish him only well and a full recovery soon."

After six weeks of homecare and homeschooling, Tzviel went for a follow-up appointment with his psychiatrist. The doctor asked him, "Tzviel, your mother and I have been speaking frequently and she has been telling me of all the progress you're making at home and so many great things. I want to hear from you. How do you feel?"

Tzviel said, "Can I ask you something? Can I go back to school?"

His psychiatrist smiled big and said, "I'm very pleased that you are asking that. Yes, let's start small and start getting back to school."

Part 8: Stigma and Upheaval

Tzviel's family never met or interacted with the school guidance counselor, despite several months of working closely with the staff at the school to help his anxiety. It was only once the topic of medication came up, that a meeting was called. Tzviel's mother tried explaining the 3 years of history of Tzviel's anxiety, about his sister's special heart and the current situation. The guidance counselor's suggestions were that his family was "doing too much", didn't really know what was wrong with Tzviel and that they needed parenting classes.

Despite her lack of qualifications, she pushed strongly to remove Tzviel from any medications. The guidance counselor immediately notified the principal after the meeting, that Tzviel's mother was a crazy obsessive mother who was self medicating her child and likely importing medication from abroad. (Laugh. It's the only way to process this bit. Much easier than crying- trust me.)

When Tzviel's mother met with the principal, she was interrogated about how she was obtaining medications and who was overseeing to Tzviel's care. Nothing productive came out of that meeting, except for Tzviel's mother demanding that the guidance counselor not be involved whatsoever.

Tzviel had started his new medication. For eight blissful days, Tzviel breathed deeply like he hadn't been able to for three years. He smiled, he interacted, he functioned. His parents got to see the version of Tzviel that they had been missing for so long.

If only things could have stayed that way. Adverse effects came on and made Tzviel's anxiety come back with a fury. Raising doses only made things worse and sent Tzviel into a tailspin.

When a classmate called Tzviel crazy and weird and pushed him, Tzviel went into a serious anxiety attack. Tzviel's homeroom teacher came to calm him, but the guidance counselor kept interrupting. The guidance counselor called and Tzviel's mother raced to school. His mother pulled up to the school to see Tzviel running in the rain being chased by his teacher, the guidance counselor, the cleaner and the guard. She watched as Tzviel scaled the fence, desperate to get away. Upon seeing his mother, Tzviel breathed and agreed to come to the car to calm down. The guidance counselor was adamant that this was not an anxiety attack and couldn't understand why Tzviel had disassociated and didn't respond to her.

Two days later an email was sent from the school, demanding an official letter that Tzviel was not a danger to himself or to others. Because an 8 year old boy climbed a fence.

Tzviel's family realized that until Tzviel was stable, the school was ill-equipped to help him and would only exacerbate the situation. All of Tzviel's doctors were consulted and the decision was made to homeschool-homecare for Tzviel until he was stable.

Tzviel's parents sat him down and explained that his anxiety was just like a very bad virus. Without giving his body and mind some time to rest, his body would work too hard and couldn't get better. His anxiety had to be taken care of and when he was well, they would slowly start school again. Tzviel breathed deeply and whispered, "Thank you."

Tzviel went to bed that first night, calmly and without any stress. He fell to sleep instantly and slept for 14 hours. The stress and exhaustion of the situation had caught up with him. Now he could begin healing. 

Part 7: More Help

Tzviel's mother had spoken in great length to their family doctor and to his therapist. It seemed that despite all the help that Tzviel was getting, the chemical component to his anxiety was still rising.

Tzviel's mother sat him down and said, "Tzviel, your anxiety has been pretty hard for you lately. You've been working so hard for so long to try to control it. There are different kinds of sicknesses. Some of them make us uncomfortable, but they can go away on their own. Like a cold. You sneeze for a bunch of days, feel pretty bad, but afterwards, it goes away. Sometimes that cold doesn't go away and causes a cough. We bring you the humidifier, rub some Vicks on your chest and work a bit harder to get you better. And some times that cough gets into your chest and causes an infection like bronchitis. In that case, we need medication to clear out the infection. You would still need the humidifier and the Vicks to help you get better, but without the medication, your body can't feel well."

"We can go to a special doctor and talk about your anxiety. He can give you a medication that will take your anxiety down, so that you can work on it again and control it better. All of our doctors think it's a good idea and will help you start to enjoy school again and stop your stomach problems. What do you think?"

Tzviel looked into his mother's eyes and simply nodded his head and said, "That sounds like a good idea."

When Tzviel met his psychiatrist, he liked him right away. He spoke softly and asked him all about himself, his family and friends. They spoke about sports and movies and Tzviel felt himself relaxing.

When his psychiatrist finally said, "So, Tzviel, can you tell me why you are here?" Tzviel answered, "I really need help with my anxiety." His psychiatrist said, "Wow, that's a great thing to hear you say. Who should talk to me about your anxiety? You or your mother?" "My mother," Tzviel answered.

While Tzviel's mother started talking about his little sister's heart and about all the hospital stays, Tzviel felt himself feel bad. He started moving his body around, and felt himself sink to the floor and hide under the desk. He ran to the other side of the room, and crouched into a small space between a chair and the wall.

Tzviel's psychiatrist said, "Got it."

(To be continued)

Part 6: Frozen in Anxiety

Second grade started in September for Tzviel and he got a new wonderful homeroom teacher. She was kind and greeted the kids with a smile. He liked her very much and was able to warm up to her. There were many other teachers introduced. Some were nice and warm. Others walked into the classroom, slamming books and talking sternly. Tzviel started to feel very on edge with each subject change.

Two weeks into the school year, Tzviel's incredible homeroom teacher asked to speak with Tzviel's mother. The year had only just begun, and she had seen little windows into Tzviel's wonderful personality, but she had concerns. Tzviel seemed to sit frozen in class, with his hands tight in fists. After a long conversation explaining Tzviel's anxiety, his mother consulted with his CBT therapist, who provided the teacher with a list of techniques that could help "ground" Tzviel when she noticed his anxiety. They stuffed his pockets with stress balls to squeeze, lined the bottom of his desk with velcro for him to touch, made up code words so he could go to the hallway and do some jumping jacks and a bunch of other things.

Tzviel appreciated that his teacher understood him and knew how to help him. With her, he was able to relax a little bit. But all other teachers made him feel uneasy. Tzviel would come home from school exhausted from trying to keep his anxiety under control all day. Each morning was again a battle to go to school, not wanting to have to endure another day. His stomach problems came back even worse and were now causing daily problems.

His parents worked closely with his CBT therapist, utilizing every technique they could. But Tzviel's anxiety kept climbing. When Parent Teacher meetings came around, Tzviel's mother sat down with his homeroom teacher. She said:

"Tzviel is such a bright, sweet boy. You need to know that he is extremely intelligent and has tested into the national gifted project. He is also such a sweet, kind, good heart-ed kid. I've been speaking with all of his other teachers. We all see him completely frozen with his anxiety. As smart as he is, at this point, he isn't learning and we can't teach him."

(To be continued.)

Part 5: Learning Tools

By age 7, getting Tzviel out of the car in the morning wasn't possible. His parents would reassure him, coax him and do everything they could. One morning, while parked right outside the school building, during an anxiety attack, Tzviel said, "I want to help myself! How? How do I make my anxiety better?" This smart boy had asked the smartest question. His family turned to his art therapist and family doctor who both highly recommend cognitive behavioral therapy (CBT).

In one of the first few sessions of CBT, Tzviel's therapist took a coke bottle and explained to Tzviel and his parents that the coke bottle was Tzviel. She started to shake it. "This is what happens when we start to feel bad inside. Afraid, scared, anxious. Tzviel, can you guess what is going to happen if I keep shaking it?" With a devilish smile and twinkle in his eye, Tzviel answered, "It will explode!" With that, Tzviel and his family went outside to the garden. Tzviel's therapist explained, "Tzviel, you've been feeling so scared and it's making you feel really bad inside. All that emotion has no where to go." She kept shaking the bottle. "Without slowly releasing the air from this bottle, you know what will happen. It's the same thing with you." With that, she opened the bottle and everyone watched coke spray everywhere.

She took a second coke bottle and started shaking it vigorously. "When our anxiety builds up and up, it feels terrible. I'd like to teach you ways to help your anxiety, so it doesn't explode. I'd like to teach you tools or techniques, so you can start feeling better." With that, she slowly opened the cap of the bottle. Some air came out. She did this a few times. "You see, Tzviel. No explosion."

Tzviel went for a few sessions, where his therapist would give him and his family exercises and techniques to learn. As well, she would ask questions and purposefully trigger anxious responses in Tzviel to get a good grasp for his anxiety. For many sessions after that, just Tzviel's parents went for the sessions. It was clear that Tzviel's separation anxiety had now expanded to a more broad anxiety disorder.

With cognitive behavior therapy, Tzviel's whole family learned how to communicate more effectively, to assess the situation, and learned how to diffuse situations very effectively. Tzviel felt much calmer, knowing that his parents understood his triggers. He felt safe when they knew how to reassure him. He started to feel really good.

(To be continued)

Part 4: Getting Help

When Tzviel was 5, he had so much trouble with his fears and frustrations. They just felt too much for him. His parents talked to their family doctor about concerns they had with behaviors they were seeing and the things that Tzviel was explaining to them. Art therapy was recommended as a source of an appropriate emotional support. Tzviel would cut out pictures of animals from magazines, draw their habitat around them and then draw a very firm and thick box around them. His deep seeded need for security was clear from every piece of artwork he made with his therapist. Through Tzviel's art, his overwhelming fear received a proper term "Separation Anxiety".

When his baby sister was hospitalized, his artwork transformed to bird's nests being held up by a string, tied to a pole that could never support itself. His thoughts and fears were clear: Tzviel was frightened by the instability of his home. Tzviel learned to express his anxiety more and more. His parents learned to be more tuned in: to understand this wasn't just a 5 year old acting out (as so many people offered in their brilliant opinions) and to learn how to respond better.


His parents slowly began to understand that his sleepless nights were linked to his fear that something would happen to his family in middle of the night and the uncertainty of what he would wake up to. They began to understand that his refusal to get ready in the morning was really his inability to prepare to leave the safety of his home.


As time went on, Tzviel's anxiety grew and grew. Bedtime became unbearable and only with the help of melatonin, would Tzviel eventually fall asleep. Morning routines changed drastically, as Tzviel needed constant support. He had also developed some chronic stomach problems because of his anxiety.


(To be continued)

Part 3: Tzviel's Perspective

I'd like to tell you our heart story from a different perspective. Tzviel's perspective. 

Once there was a little three year old boy. He was bright, quiet and very funny. He was extremely easy going in most cases, but every now and then, his parents would notice specific situations that would stress him out. Like crowded rooms, or having babysitters. He was quiet around those outside of his family but when alone at home,  he would say some of the funniest things anyone had ever heard and the rest of the time would impress with some scientific fact way above his age level.

When he was three and a half, his parents told him that a new baby was in his Ima's tummy. How exciting! Everyone seemed thrilled about it. Until a few weeks after that big announcement. Then he saw and felt the stress levels go way up. He would catch Ima crying a lot and heard snippets of conversations that he couldn't understand. His parents explained that they were worried about the baby being healthy.

The day before Tzviel's little sister arrived, there was a very big move. Tzviel moved in, along with his big sister and Abba to his grandparents home for a long time until the baby could come home.

And then the baby was born. It wasn't joyful. It was stressful. Ima lived at the hospital for 24 days and came back to visit every few days. Tzviel and Mechal came to the hospital to visit every few days. He spoke to Ima by phone and Skype daily. But nothing was the same for anyone. No one was in their normal environment and everything was different.

And then Ima came home from the hospital with Tzviel's baby sister, Tehilla. Everyone moved back home which felt very nice. His family was all together again. Until 2 days later, when Tehilla had to be rushed to the hospital with Ima. And two days later again, they rushed to the hospital. And for the next five months, Tzviel would go to sleep at night, unsure if his baby sister would be rushed to the hospital again. Unsure whether his Ima would be home. Unsure if his family would be together.

The first year and a half of Tehilla's life were filled with frequent moments where Tzviel's family wasn't together. There were so many hospital visits. Sometimes they were just for one day. Sometimes they were for a week or more. Everyone always did as much as they could to help, but the instability of Tzviel's home made him very scared. He desperately wanted his family together at home.

(to be continued)

Part 2: How to explain

Part 2:

I thought I had parenting and life figured out before I had kids. I knew all the ways I was not going to parent and saw all the flaws in what everyone else was doing. My kids would never do that and would surely be everything I set out for them. Someone give me a time machine to slap some sense into my naive former self.

This post isn't just about giving an explanation for my lack of posting. It's not about updating the world and letting everyone into my personal life. This post, I hope, will do something. I hope this post gives validation to those that have been down a similar path. I hope this post opens minds and educates. I hope this helps in some way to change the world. I need it to change the world.

I'll start by saying that Tzviel does NOT have pediatric diabetes. Again, he doesn't. But what if I told you he did. What if I told you that around the time Tehilla was born, we started seeing something irregular. What if I told you that we spoke with our family doctor, who directed us medically. What if I explained that we started treating him and doing everything we could. What if I told you that as much as we tried helping and treating him, his condition worsened and we had to keep providing him with treatment. And at some point medication became necessary. How would you react?

You would nod your head in understanding and mention some friend of a friend who also had a kid with pediatric diabetes. You'd listen sympathetically to the challenges we faced and the changes we all had to undergo in our family to accommodate and assist our child. You'd have been supportive and wonderful.

Would you have suggested if we were stricter and better parents, then he never would have developed pediatric diabetes? Would you have called our judgement into question for providing him with medication? Would you have pushed for him to be removed from other kids, fearing he somehow effect the other children?

I'd like to tell you our heart story from a different perspective. Tzviel's perspective.

Part 1: I hope

Quite a number of weeks ago, I promised to explain the side story to our heart journey that has kept our family busy and has kept me from updating the blog. It's something big that I really want to explain. I've started and restarted that blog post many times over. I keep having to rewrite it out of fear.

You see, this blog has been with my family through some of the worst situations. You held our hands, held us in your hearts and held us in your prayers. In a lot of ways, that was easy for you to do. We are a family, no different from your own, with an impossible situation. Oh, and an impossibly cute little heart warrior princess. It was easy to understand our predicament and understand that in many cases, the only thing that could save our daughter was G-d's miracles. So, you came running to our aid and loved Tehilla like your own.

This situation is different. This situation takes empathy and education. Our generation is combating re-educating society about this very issue. Often it is met with judgment. I realize I'm being cryptic, and it's purposeful.

So many times, I felt defeated when writing my post, concerned that I wouldn't be able to explain efficiently. Our family has gone through something very very hard, and we have been met with coldness and stigma in small interactions and crucial interactions. I wanted to protect my family from more. I wanted to protect my son. But in remaining quiet, I am only keeping things at status quo. I can only make a change if I speak up and try to explain. For my son and for so many like him.

I'm going to give it my best shot. It's lengthy, so I will split it into several blog posts. I hope it helps make a change. I hope it helps other people, going through similar situations. I hope you all will respond with the same love you have shown us before.

5 Weeks Worth of Updates

I apologize. I know you all love Tehilla dearly and love hearing about her updates. Gone are the days when I updated the blog daily, and even weekly. There has been a lot going on in our lives, not unrelated to Tehilla's Heart Journey, but a side-story, I guess you can call it. I'm preparing that update for all of you.

In the meantime, Tehilla is doing well. Very well. Not to jinx anything but she hasn't been sick for two weeks or so. Thank G-d.

She is going through a fabulous stage right now, where she is stomping her feet and insisting on creating a new sleeping arrangement every night in a different room or she somehow ends up in our bed. But you know- with one foot on my face, another foot in Ron's ribs. That kind of sleeping arrangement. She also NEEDED her room decorated with twinkle lights.

Now is the time of year, when parents are worriedly checking out different preschools and kindergarten programs. Tehilla's teacher asked to speak to me two weeks ago about Tehilla's progress. The teachers and assistants have all kept a close eye (sometimes too close and overly worried) on her and have been watching her progress. It seems Tehilla is behind in her development. This isn't unexpected, especially with all that she has gone through. We had assumed it was somewhere between a half a year and a year behind. The main teacher feels that Tehilla is a year behind in her social skills and fine motor skills.

I think the teacher expected me to be upset or put up a fight at the idea that my child might have some difficulties. I guess I haven't explained enough what we have been through. She has trouble coloring and cutting- no biggie! She needs a little assistance in drawing friends in- piece of cake! Ya see, she's kind of survived severe heart failure and other not so pleasant things. It changes your outlook as a parent. These things, we can overcome them.

The decision was made to hold her back a year, so that she remains with 4 year olds. The teacher has already been using her prominent role, to help us circumvent the municipality bureaucracy. We will also be putting her back in speech therapy and getting her occupational therapy.

Next update of our side story coming later this week...