Monday, February 20, 2017
"Yeah, you've been posting- but how is TEHILLA? You haven't posted about her in awhile!"
Let's see...how is this little ball of energy with a side helping of mischief and sweetness? She's perfectly age appropriate. Her blonde hair is coming in a bit more and is doing this hereditary thing that I had hoped she wouldn't get- broccoli hair. It's hair that has the thickness and frizziness to stand on end. All the girls in our family have learned to deal with it and she is too. But she is too busy giggling every time we tell her that she has broccoli hair.
She had a growth spurt and is still a little pixie but a slightly taller pixie. Overall, she is just maturing and blossoming into a little girl and less baby-like.
About the moment that I posted that Tehilla's speech evaluation was counter-productive and got us high-tailed out of the special education language schools- right around that time, something in Tehilla's speech went full speed ahead. I can't explain it. Maybe it's some more of that blog family magic juice (prayers), but her speech suddenly jumped in ability and the problem areas that I was seeing from her apraxia of speech are now barely audible. She will be restarting speech therapy in a week with someone new and in Hebrew.
I have been scheming to record Tehilla during bedtime. So far it has been unsuccessful, but she has started singing Shema and the rest of the songs along with me. Listening to her little high pitch voice singing and saying prayers has brought tears to my eyes. Believe me, I am trying to get a recording, but she has caught me every time.
The best way that I can describe how Tehilla is heart wise is to tell you what happened today when I picked her up from school:
Tehilla saw me and jumped into my arms and I started asking her how her day was. While I was talking to her, her teacher mentioned to me that her finger tips were very purple. I explained that Tehilla was just cold and that she must have just been playing outside. Her teacher nodded and we were talking about Tehilla's well-being and where we were sending her to school next year. Another mother who has no knowledge of Tehilla's health issues, overheard a piece of the conversation and inserted, "You really don't need to worry at this age about issues and how they adjust and if there are issues..."
I smiled at the woman and said, "Some issues are worrisome. Tehilla has half a heart." I then relished in watching her smile fade and her mouth drop open as she for the first time noticed Tehilla's fading scar. "What?!? I had no idea. I'm so sorry. But I saw her dancing at the Chanukah party and she looks so...so...so..."
I cut her off: "Normal? Amazing?"
Her teacher said: "Perfect. Just perfect."
Thursday, February 16, 2017
England was...interesting. An adventure. A new experience.
It's been awhile since I returned home, but I finally have the time and energy to write in more detail about my trip. I was flown to England by an organization called Genesis that does amazing work on university campuses. Their goal is to keep that Jewish spark alive for university students who are far from home. They provide delicious food and interesting speakers every week and have employed some of the most dynamic and warm couples to live off campus and be there for the students.
Our dear friends are one of these amazing couples and it was their idea to bring me in. It took a lot of convincing, but I eventually agreed. I, very mistakenly, thought that it would be something of a mini vacation and that I would have a lot of quiet and down time. Instead it was very busy and active and quite the trip.
I was greeted by a driver and was driven to a lovely little hotel in London. There I was met by head of operations of the program to give me a quick run down of how the following day would go.
Every day, I was driven between 2-3.5 hours to a different location in England, then I gave my speech to the students, socialized and ate dinner with them and then was driven back to London.
I met with groups of students and was very impressed by their ambitions, their maturity and a lot of their questions.
It was an interesting experience to share our journey in such a way. For us this is just our life and how it has played out, miracles and all. To organize our story and show it with a presentation with pictures and then give it over- It just was something so new.
We named her Tehilla because if G-d granted her life then she would be a source of Praise for Him. And that is what this was. A new means of praising G-d for the miracles that He bestowed upon us.
I enjoyed the experience and would do it again.
Monday, February 6, 2017
I received a call from the speech therapist who conducted the evaluation. She was calling to inform me that she had analyzed her notes and determined that Tehilla's speech and understanding were perfectly age appropriate and that she was recommending Tehilla for regular schooling and some additional speech therapy and did not see any of my concerns.
I tried to reason with the speech therapist that Tehilla was not cooperative and therefore the evaluation couldn't possibly have been successful. But this was not an argument that I was going to win. She told me that the little bit that she saw was enough and that no one would approve Tehilla for Gan Safa.
It's funny how you really want your kids to be able to succeed in the most mainstream setting, but when you know that there is something going on, you have to fight for your child to be deemed as having a problem.
Tehilla is being sent for an evaluation by Hitpatchut Hayeled (Child Development Center) that will have several different professionals, such as a physical therapist, a speech therapist, a pediatrician and possibly more people, evaluating her at the same meeting. That evaluation is in 3 weeks and we will see what they determine and what their recommendations are.
In the meantime, we have registered Tehilla for a regular preschool in our neighborhood. I have met with the teacher and gave her a little background. She seemed up to the challenge and genuinely kind and interested. We will also be applying for Tehilla to receive a medical shadow and I will have to train all of the staff in the basics of symptoms of heart failure and caring for Tehilla.
It's possible that a regular preschool is best for Tehilla, and that with speech therapy, that will be all that she needs. We have no choice but to find out. Alternatively, if her teacher feels that there is a problem, there are systems set up, that she can receive help within the school. We will have to wait and see.
Saturday, February 4, 2017
Thursday, February 2, 2017
Wow. Tonight was my last speech. It was in Leeds. It was a great session with a very dynamic bunch of 40 students. They were extremely responsive and asked some of the best questions.
"How much do your other kids know?"
"Have you ever lost your faith?"
"At the time right before the Glenn surgery when you were told her chances of survival were minimal, did you regret going ahead with the pregnancy?"
This has been the greatest adventure. I (now) kind of understand why people find our story inspirational. But to me, it will always just be our life.
In my speeches, I explained that we named her "Tehilla" because it means "praise" and that we made a deal with G-d- It's up to You, G-d. If You let her live, people will praise You when they see this little girl with half a heart.
I guess these speeches were a part of that. I think I would accept more speaking tours again in the future, but right now all I can think about is a big snuggle session with my kids. We are so blessed to be together and be enjoying this time of calm.
I cannot wait to get home and hug my kids. I'm on the train back to London and am then catching my flight early in the morning back to Israel.
Today I was driven two and half hours to Birmingham. There I once again gave my speech, but this time I was given feedback to try not to speak from my prepared speech. It went much better and I connected with the students. Quite a few students were in tears by the end and the response was very good.
What was even more incredible was hearing from the organizer in Birmingham that his brother also had a critical congenital heart defect and was single ventricle and is now 25 years old and just got engaged. Hearing about his brother made me teary eyed and filled me with hope.
Once again it was that tireless statistic: 1 in 100.
I took the train to Leeds and spent the night at dear friends, who are organizers of the Leeds branch.
Today will be my last speech in Leeds and I will take the train back to London, sleep about 4 hours and then be driven to the airport.
Wednesday, February 1, 2017
Last night, I drove 2.5 hours to Bristol. There was a small turnout of 15 students. It was a small but more intimate session.
Once again, the students surprised me with their questions. One in particular:
"Does Tehilla know? Is she aware of her condition?"
It's really not a simple answer. Yes, she knows she has a special heart. She knows it gets sick sometimes and that she needs to take medications to keep her heart well.
But no...she has no idea that her journey is unique. She has no idea that her normal is nothing but normal. And no- she has no idea that her entire existence is miraculous.
One of the students went up to the staff and expressed how much our story touched him, because his little brother has a congenital heart defect. Sigh. 1 in 100. It doesn't matter where you are, that statistic of 1 in 100 kids will be born with a congenital heart defect exists.
It's what makes a part of this speaking tour so important - the awareness aspect. Of the students that I will meet in this entire trip- 2 of them will have children with a heart defect. Statistically speaking. I hope my speech will resonate with them when they find out and give them the strength to fight.
Today, we go to Birmingham.