tag:blogger.com,1999:blog-29321121713420242762024-03-15T09:52:04.588+02:00Tehilla's Heart JourneyTehilla bat ShoshanaShoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.comBlogger847125tag:blogger.com,1999:blog-2932112171342024276.post-13768356139422903092023-10-02T17:30:00.000+03:002023-10-02T17:30:37.844+03:00Life after miracles<p><br /></p><p>Once upon a time, in a lifetime eons ago, a little baby girl was born. Every birth comes with its nuances- some more than others. </p><p><br /></p><p>This one had more than its share. The operating room filled with 3 medical teams: the obgyn surgical team for the c-section, a fully staffed neonatal intensive care team, and one of the most skilled cardiology and cardio-theurastic surgical teams. In a beautiful synagogue in the lower floors of the hospital, waited the baby's uncles and aunts, cousins, and grandparents. </p><p><br /></p><p>Her parents nervously awaited her arrival and named her Tehilla immediately, for people to begin praying for that brave heart warrior princess. And it began...</p><p><br /></p><p>The prayers, the challah baking, the desaturations, the ER runs, the acts of kindness, the loving messages, the heart failure, the destabilization, the medications, the hospitalizations, the warm blog family, the sweet presents and outpouring of love, the heart catherizations, the surgeries, the blood pressure problems, the incredible medical interactions, the building of an organization to support families of kids with congenital heart defects, the lifelong connections, the heart echos, the constant medical monitoring...</p><p><br /></p><p>And behind the scenes came therapy, challenges, resilience, trauma...and more ups and downs than I can list. Our family is no longer the same. We are all finding our healing and happiness. </p><p><br /></p><p>That little baby girl turned 10 years old yesterday. She is a crafty, creative, witty, sassy, joyful, bold, friendly and wonderful kid, learning to navigate the world. She's in 4th grade and in Scouts. She has a cute group of friends that frequent each other's houses and obsess over Harry Potter. </p><p><br /></p><p>And with all the normalizing that came, Tehilla began to want even more normalcy. To move further away from being the "heart kid", the miracle, the chd warrior princess, the medical marvel. She wanted to be a kid. She wanted to live her life. And who could blame her- she earned it! It was what we all had prayed and hoped for. </p><p><br /></p><p>She didn't want her medical history being a big deal in school, she didn't want extra attention from it. She was ready to just be her. About 3 years ago, she asked to start being called Emma at home, a nickname for her English name, Emily. As we made the switch, she found comfort in forming her identity away from "Tehilla, the heart kid". She started asking her class at school to make the switch, and some family. When we moved last summer to a new city, she introduced herself at school and to our community as Emma. </p><p><br /></p><p>There is no greater gift then being at this stage in Emma's parenting, watching her blossom as a healthy, regular kid. </p><p><br /></p><p>This blog was an important part of our lives when we needed it most. Helping us find a community, getting hundreds of thousands of people to pray for our baby girl, updating family and friends...</p><p><br /></p><p>And now, like Emma, we have shifted to enjoying a relatively normal life and the blessings that we prayed for. Thank you for the role you played in our lives and for being our loving blog family. </p><p><br /></p><p><br /></p><p><br /></p>Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com2tag:blogger.com,1999:blog-2932112171342024276.post-5692542813989482892018-09-16T15:22:00.003+03:002018-09-16T15:22:35.616+03:00You're InvitedThere 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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />The party is on Friday, September 28, 1-3:30 pm at our home. <br /><br />Please click on the link below or email/message us for the details:<br />
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<br />
<a href="https://www.facebook.com/events/2292730184077360/permalink/2292730200744025/?notif_t=feedback_reaction_generic&notif_id=1537100432433393" target="_blank">Mesibat Hodaya</a><br /><br />We hope you will be able to join us! Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com13tag:blogger.com,1999:blog-2932112171342024276.post-16083165932855302912018-07-26T22:32:00.000+03:002018-07-26T22:32:01.413+03:00Pause: Some ExplanationsBack in the days of continuous blogging about Tehilla...<br /><br />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?"<br /><br />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? <br /><br />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. <br /><br />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. <br /><br />No worries. This blog isn't going anywhere. I have more to write. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />For now, all of your love and support always means so much to us. Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com36tag:blogger.com,1999:blog-2932112171342024276.post-59085526767102604992018-05-23T10:36:00.001+03:002018-05-23T10:36:58.660+03:00Part 10: The Cha-cha(Apologies in advance to the dance aficionados)<br /><br />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.<br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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." <br /><br />Tzviel relaxed and was happy knowing that he would be safe with his "cha-cha" step forward. <br />
Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com47tag:blogger.com,1999:blog-2932112171342024276.post-68119077282672601842018-05-14T19:16:00.000+03:002018-05-14T19:16:29.805+03:00Tehilla Interruption<div class="separator" style="clear: both; text-align: center;">
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We interrupt the scheduled broadcast...</div>
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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.<br />
<br />
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.<br />
<br />
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.<br />
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Thank G-d.<br />
<br />Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com5tag:blogger.com,1999:blog-2932112171342024276.post-4588259279622515632018-05-02T14:57:00.002+03:002018-05-02T14:57:45.033+03:00Part 9: Homecare and HomeschoolTzviel 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. <br />
<br />
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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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.<br /><br />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."<br /><br />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?"<br /><br />Tzviel said, "Can I ask you something? Can I go back to school?"<br /><br />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." Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com5tag:blogger.com,1999:blog-2932112171342024276.post-13930621156199435392018-04-23T11:10:00.000+03:002018-04-23T11:10:26.853+03:00Part 8: Stigma and UpheavalTzviel'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. <br />
<br />
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.) <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br /><br />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. <br />
<br />
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."<br />
<br />
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. Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com9tag:blogger.com,1999:blog-2932112171342024276.post-81283045602418532412018-04-13T09:58:00.000+03:002018-04-13T09:58:05.121+03:00Part 7: More HelpTzviel'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.<br />
<br />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."<br /><br />"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?"<br /><br />Tzviel looked into his mother's eyes and simply nodded his head and said, "That sounds like a good idea."<br /><br />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. <br /><br />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. <br /><br />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. <br /><br />Tzviel's psychiatrist said, "Got it."<br /><br />(To be continued)Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com3tag:blogger.com,1999:blog-2932112171342024276.post-79197017307016573992018-04-08T10:01:00.002+03:002018-04-08T10:01:54.225+03:00Part 6: Frozen in AnxietySecond 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. <br />
<br />
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. <br /><br />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. <br /><br />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:<br /><br />"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."<br /><br />(To be continued.)Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com4tag:blogger.com,1999:blog-2932112171342024276.post-3981186820168492322018-03-27T21:36:00.002+03:002018-03-27T21:36:42.752+03:00Part 5: Learning ToolsBy 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).<br />
<br />
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.<br />
<br />
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."<br />
<br />
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. <br />
<br />
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. <br />
<br />
(To be continued)Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com4tag:blogger.com,1999:blog-2932112171342024276.post-86395026736299189242018-03-25T20:16:00.000+03:002018-03-25T21:06:12.158+03:00Part 4: Getting HelpWhen 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".
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<br />
<br />
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. <br />
<br />
<br />
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. <br />
<br />
<br />
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.<br />
<br />
<br />
(To be continued)</div>
Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com4tag:blogger.com,1999:blog-2932112171342024276.post-50537000718879739592018-03-22T00:00:00.000+02:002018-03-22T00:00:16.510+02:00Part 3: Tzviel's Perspective<div dir="ltr">
I'd like to tell you our heart story from a different perspective. Tzviel's perspective. <br />
<br />
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.<br />
<br /></div>
<div dir="ltr">
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.<br />
<br /></div>
<div dir="ltr">
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. </div>
<div dir="ltr">
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.<br />
<br /></div>
<div dir="ltr">
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, <u>they</u> 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. <br />
<br /></div>
<div dir="ltr">
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.<br />
<br />
(to be continued)</div>
Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com1tag:blogger.com,1999:blog-2932112171342024276.post-65831488891571719662018-03-20T09:17:00.000+02:002018-03-20T09:17:22.976+02:00Part 2: How to explain<div dir="ltr">
Part 2: <br />
<br />
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.<br />
<br />
</div>
<div dir="ltr">
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.<br />
<br />
</div>
<div dir="ltr">
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?<br />
<br />
</div>
<div dir="ltr">
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.<br />
<br />
</div>
<div dir="ltr">
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?<br />
<br />
</div>
<div dir="ltr">
I'd like to tell you our heart story from a different perspective. Tzviel's perspective.</div>
Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com4tag:blogger.com,1999:blog-2932112171342024276.post-20998186944902995102018-03-18T09:25:00.000+02:002018-03-18T12:22:55.409+02:00Part 1: I hopeQuite 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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com5tag:blogger.com,1999:blog-2932112171342024276.post-28497335474837848012018-02-06T10:28:00.000+02:002018-02-06T10:28:19.278+02:005 Weeks Worth of Updates<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQeVZbZQwmpqMIH2zQdEjdsPlJF4TN2WRK0eP4tD1-v07qv-U7MOOX7oLIuDwvQMBNg2pZ-bAU5fv3Ll5S01c258GTQmN3LnK1H603jLb9XGwbHs77gT1ivOypgud0KiAQSNdzhkWV40c/s1600/Tehilla+update.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1328" data-original-width="747" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQeVZbZQwmpqMIH2zQdEjdsPlJF4TN2WRK0eP4tD1-v07qv-U7MOOX7oLIuDwvQMBNg2pZ-bAU5fv3Ll5S01c258GTQmN3LnK1H603jLb9XGwbHs77gT1ivOypgud0KiAQSNdzhkWV40c/s640/Tehilla+update.jpg" width="360" /></a></div>
<br />
<br />
<br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br /><br />Next update of our side story coming later this week...<br />
<br />Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com3tag:blogger.com,1999:blog-2932112171342024276.post-5707108205205093322017-12-20T20:31:00.001+02:002017-12-20T20:36:29.544+02:00Barely Treading WaterSo...I'm going to take this moment to take the biggest deep breath. *Ahhhh* That felt better. <br />
<br />
It has actually been a month of everyone being sick, around the clock. As soon as one kid feels better, another is running a fever or finding a perfect opportunity to throw up on one of us. And then that day that everyone felt just right- that was when Chanukah vacation started.<br />
<br />
When filling amoxicillin for four of us and augmentin for the fifth, the
pharmacist sympathetically smiled and said, "Tough start to winter,
huh?"<br />
<br />
I know, I know- count your blessings. And I do. I'm just so tired. So so tired. <br />
<br />
After that scare that Tehilla gave us, she kept improving and her oxygen saturation stayed exactly where it was supposed to. But then she got a cough that got worse and worse and worse. We tried a lot of different things to help relieve the cough, but nothing seemed to help. After hearing some stryder in her cough, I gave her one of Tzviel's puffers which immediately stopped the coughing until the morning. Two puffs and it was gone again. <br />
<br />
Then her ear started hurting again. We went to see our doctor, who agreed that the puffer was the right move and checked her thoroughly. Turns out it was pain caused from pressure in her ear canal from a new cold starting. Joy to the *enter expletive* world. <br />
<br />
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<br />
<br />
Needless to say, Chanukah was celebrated with joy all eight nights and spent with family and friends. Tehilla is feeling well enough to sing every Chanukah song she knows from school over and over. And over and over. <br />
<br />
With all the complaining aside, we are very blessed to have spent this wonderful holiday together. Every holiday that goes by, I'm reminded of what a true miracle it is that we are together and celebrating as a family. These moments can't be taken for granted and they are treasures that we all hold onto dearly. <br />
<br />
<br />Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com3tag:blogger.com,1999:blog-2932112171342024276.post-66628772959941864812017-12-11T00:33:00.001+02:002017-12-11T00:33:14.288+02:00Settling in<p dir="ltr">We are settling in for a night at home. Tehilla is clearly not feeling well and seems off. She started the Augmentin right away. And went to bed at her usual bedtime. </p>
<p dir="ltr">She woke up a few hours later feeling very unwell and then very hungry for pasta. She let me check her oxygen levels. She was back up to 83-85, so we are very happy. </p>
<p dir="ltr">She has insisted on sleeping in our bed. We will see how tonight goes but things are looking good and should allow us to stay home and out of the ER. </p>
Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com1tag:blogger.com,1999:blog-2932112171342024276.post-7475410261662175922017-12-10T16:37:00.001+02:002017-12-10T16:41:26.923+02:00Desat Judgements<div class="separator" style="clear: both; text-align: center;">
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<div dir="ltr">
<br /></div>
<div dir="ltr">
<br /></div>
<div dir="ltr">
<br /></div>
<div dir="ltr">
About the moment that I stepped off the plane from England, everyone in our family got sick. </div>
<div dir="ltr">
Tehilla seemed to have a virus that got worse and worse. It finally developed into an ear infection, while the rest of us were diagnosed with strep infections. Five antibiotics handed out twice a day...feels a lot like winter. <br />
<br /></div>
<div dir="ltr">
Tehilla went back to school a few days later when she was symptom free. But the past few days she has been napping and a little lethargic. Today, I was called to school because she threw up. <br />
<br /></div>
<div dir="ltr">
While all the various teachers clucked around her offering their old wives tales as medicine, I studied Tehilla's face. She was purplish and looked unwell. I changed her clothes and pulled my pulse ox out of my purse. 73 and then 78. Not good. <br />
<br /></div>
<div dir="ltr">
I called our doctor who wanted us to rush to the ER. I didn't agree. Tehilla desats when in pain and this has happened repeatedly with ear infections. I wanted her to be seen but our doctor was leaving the office and the doctor on call is someone we don't like or rely on for medical advice. I don't want to go to the ER with all the nasty illnesses going around now and risk exposure to Tehilla.<br />
<br /></div>
<div dir="ltr">
I talked it out with our doctor who agreed it's probably that her antibiotics aren't working or it's progressed to pneumonia. He wrote a prescription for Augmentin and a referral to the ER. We are to start her on Augmentin right away and if we see any other signs or think she is heading downhill, we are to go to the ER. <br />
<br /></div>
<div dir="ltr">
We are so blessed to have a doctor who fully trusts our judgement and is willing to work with us. <br />
<br /></div>
<div dir="ltr">
Prayers that I'm right and we don't have to run to the ER tonight. </div>
Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com2tag:blogger.com,1999:blog-2932112171342024276.post-79402013410603414782017-12-03T15:11:00.001+02:002017-12-03T15:11:48.354+02:00MiracleversaryThey all were miracles. All 4 of her open heart surgeries were miracles. Each in their own right. But there was something very different about that 3rd surgery, if you will all remember.<br /><br />For those that were part of the blog family three years ago- you know that it wasn't just that the odds were against us. It wasn't just that open heart surgery has a challenging success rate. It was that she wasn't meant to survive. <br /><br />Those were the days when our doctors eyes were brimmed with tears. Those were the days when we heard the crappiest words you can hear, medically speaking: "out of options" "no chance of survival"...<br /><br />And those were the days that we turned to you. We had absolutely nothing left we could do and nowhere to turn. And you embraced us in the warmest hug a family could ever give. You cracked the heavens open with your prayers. You filled charity boxes. You baked challah en mass. <br /><br />So, yes, I made up a word. Miracleversary. It's a great word. Tomorrow marks the day that a complete miracle happened here. "Nes Gadol Haya Poh". Today marks the day that you all showed up when you were asked to. You all stood by our side and loved the heck out of us and our daughter. <br /><br />I love you, blog family. Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com3tag:blogger.com,1999:blog-2932112171342024276.post-90678070587556295062017-11-24T08:49:00.000+02:002017-11-24T08:49:08.328+02:00Manchester and LeedsWednesday night, I spoke in Manchester and Thursday in Leeds.<br />
<br />
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<br />
<br />
There is always one or two interactions that always stay with me. This time it was Chaya in Manchester and Shira in Leeds.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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!<br />
<br />
And now, blog family, it's time to go home and spend Shabbat snuggling with my family!<br />
<br />Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com0tag:blogger.com,1999:blog-2932112171342024276.post-91989189317626318962017-11-22T13:46:00.001+02:002017-11-22T13:46:25.075+02:00Nottingham and Bristol<p dir="ltr">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. </p>
<p dir="ltr">Monday, I was sent to Nottingham, where I gave my first speech. Yesterday, I went to Bristol. </p>
<p dir="ltr">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. </p>
<p dir="ltr">It's unusual to spend so much time reflecting on our life but it only reminds me of how truly blessed we are. </p>
<p dir="ltr">Today, I will be speaking to two different groups in Manchester. <br><br></p>
Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com1tag:blogger.com,1999:blog-2932112171342024276.post-88626203992632583512017-11-19T15:40:00.001+02:002017-11-19T15:40:55.637+02:00London Here I Come!<div class="separator" style="clear: both; text-align: center;">
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<br />
<br />
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.<br />
<br />
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.<br />
<br />
See you all on the British side.Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com0tag:blogger.com,1999:blog-2932112171342024276.post-20757442684027835872017-11-15T12:22:00.002+02:002017-11-15T12:22:57.486+02:00Cardiology Check-up<div dir="ltr">
Everyone take a big sigh of relief.</div>
<div dir="ltr">
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Everything is fine. Her oxygen saturation is a little low at 83 but everything looks good. Thank G-d. </div>
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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. </div>
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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. </div>
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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. </div>
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No surprises, everything stable and good and room to make decisions based on preference- so honestly that couldn't have gone better. </div>
Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com8tag:blogger.com,1999:blog-2932112171342024276.post-11710386203979284992017-11-11T20:56:00.000+02:002017-11-11T20:56:45.552+02:00Everything All TogetherDo 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. <br /><br />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:<br /><br />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. <br /><br />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. <br /><br />Now, this...<br /><br />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. <br /><br />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.<br />
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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. <br /><br />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.<br />
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<br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />May this week bring all that mourn her some calmness and hopefully a boring uneventful appointment for Tehilla. Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com3tag:blogger.com,1999:blog-2932112171342024276.post-38993902779098355032017-10-29T20:53:00.000+02:002017-10-29T20:53:00.075+02:004th Birthday Party<div dir="ltr">
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Today we celebrated Tehilla's 4th birthday. Pictures will be at the bottom. </div>
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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. </div>
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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. </div>
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She had blue intense eyes that seemed to be speaking to me and no hair to speak of. </div>
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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." </div>
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And everyday she succeeded. Everyday she overcame. Everyday she grew stronger. </div>
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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."</div>
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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. </div>
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She's 4 years old. She can jump and skip and sing and count and drive us all crazy.</div>
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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. </div>
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That is the future that I can dream about. </div>
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Shoshanahttp://www.blogger.com/profile/05999910679697229171noreply@blogger.com4