Monday, February 6, 2017

Not Gonna Happen

Before I left for my England trip, I had posted about our new attempts at schooling for Tehilla. We had wanted to send her to Gan Safa (Language Development Preschool) and had been sent for a speech evaluation. I wrote how the evaluation had been completely unsuccessful. Tehilla shut down and refused to speak during the entire appointment. She pointed to the pictures and showed her cognitive and understanding abilities, but only said a few sentences during the last ten minutes of the appointment.

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

Home

I arrived home in time for Shabbat. I got the best snuggles and we enjoyed such a wonderfully calm Shabbat.

Now, to a week of regular routine and normalcy...thank G-d.

Thursday, February 2, 2017

Leeds

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?"

Powerful questions.

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.

Good-bye England!

Birmingham

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

Bristol

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.

Tuesday, January 31, 2017

Nottingham

Last night was my first speaking engagement at the University of Nottingham. It was a two and a half hour drive there. The campus is beautiful and the organizers of Genesis, the program that brought me, are really wonderful.

I spoke for 35 students and staff members and I have received great feedback. Everyone listened along and I took questions at the end. The students asked some excellent questions. It was a wonderful experience and I'm very happy I agreed to do this.

Tonight, I'm headed to Bristol.

Meanwhile, I'm receiving these kind of pictures from back home. I really miss my little monkeys. I wish they were with me and I could take them around to see everything. Maybe another time.

Monday, January 30, 2017

London Travels

I'm in London! I have never had such a complication free flight. I'm starting a new direction on this heart journey. One where I talk about Tehilla's story and spread awareness and talk about the power of prayer, miracles and faith.

Guess what, blog family? You are a huge part of my speech.

I have already received 6 pictures of my kids with sad faces...and I miss them terribly...but on behalf of all the tired parents out there, I am giddy with the idea of sleeping a full night and taking a shower without a child shouting on the other side of the door.

Tomorrow is my first event, at Nottingham University! Oh, and I left with Tehilla feeling all better. Let's hope it stays that way for all my kids!