Sunday, March 20, 2016

What It All Means

I need to be open with you, my blog family. I need to express myself and I hope you will be patient with me, while I lay it all out. 

I was 17 weeks pregnant when we had a diagnosis for Tehilla of HLHS. I didn't know what oxygen saturation was or what a congenital heart defect was. I just knew there was something very wrong with this little person growing inside of me. Getting pregnant with her had not come easily. And our hearts were breaking in pieces, as we began to learn and read more and more about HLHS. 

All we wanted was a little baby. All. What a ridiculous way of saying it. Anyone who has experienced infertility, secondary infertility, pregnancy loss, or the death of a child knows how weighted that phrase is. All we wanted was a little baby. Ridiculous.  

And there we were. Finally, pregnant with this little girl. A little girl who we had already named Tehilla, even though we had strong plans of other names. We didn't understand why, but from week 8 we had disregarded all other names and could only call her Tehilla.  Curiously enough, a fetus's heart is fully formed by week 8. Huh. The time that G-d had formed Tehilla's special heart, was the time we were praising G-d with her name.
Well there we were at week 17, contemplating terminating the pregnancy. Scared out of our minds and completely devastated. Our neighborhood is completely watered by my tears, and I wore sunglasses to cover up my puffy red eyes. 

Our immediate families knew what was going on and we told 4 other couples. The toll of calling these people each time there was a doctor's appointment or an update was necessary but exhausting and we started updating everyone with an email. 

Heart moms suggested creating a blog to update everyone and make it easier on us- especially once Tehilla would be born. Well, as you all know, this blog caught fire and we have thousands of members of our blog family.

What you don't know is this:

The day that a surgery or catheter comes, is the quietest noisy day possible. As parents, we wake up, if we slept at all, with an ache in our hearts, so great it could kill you. We give each other knowing nods and avoid saying anything. We know that if we open our mouths, we might fall to pieces, unable to support ourselves, let alone each other. We fumble to get ready and try to pretend it is just another morning. But that terrible ache reminds us constantly how very different that morning is.

We get our other kids ready for their days, and kiss them and hug them- hoping that this day will not bring the worst news ever. Hoping that tomorrow will be just as normal a day for them. We make them give Tehilla a kiss goodbye. We leave them in the care of family or friends and set off for the hospital.

Without fail, I insist on leaving much too early. We make it to our hospital and get checked in. We make jokes about anything and everything to avoid talking about what is about to happen. And then they send for us.

From the moment that a porter comes to take us to the heart catheter lab or to the operating room, every second is felt. We are in the most present moment of our lives. We watch Tehilla's cute smile, we stare into her beautiful blue eyes, we stroke her skin. We are taking notes- just in case. Making mental memories of her little voice, her soft skin, the smell of her hair.

Then, one of us accompanies her into the room. We hand our little baby over and have no guarantees if we will see her alive again. We don't know how the procedure or surgery will go, and what forms of support she will come out with. Our entire lives will change in the course of a few hours, and there is no limit to how tortured our mental state is.

We then sit and wait. We are frozen in body, in mind and in spirit. 

During Tehilla's last surgery, I had to run to the pharmacy to pick up some vitamins for myself. I walked through the hospital and then the mall attached to the hospital in a fog. I couldn't understand how everyone was just going about their day, when my life was in such a state of limbo. I was incapable of saying the regular niceties "Hi, thank you, have a good day." I just stared blankly at the cashier. The feeling resembles swimming underwater and hearing some jumble of noises coming from the surface. Everything moves slower and nothing makes sense.

During this time of waiting, we are incapable of praying. We are in shock. It may sound crazy as it is our baby in that room- but we cannot do anything. This is where YOU come in.

Now you can understand what an important role you play in our lives. You pray in place of us. You pray for our daughter, when we cannot. You lift us up and strengthen all of us. Your messages and comments feel like sweet reminders to breath. You force some life into us, when we can barely move. Each of you is essential to our journey.

So, we are one week away. Just one. When I ask you to pray, know that I am asking you from the depths of our hearts and that you are doing the greatest kindness for us.


  1. davening for a complete refua daily. I'm sure it wasn't easy to write now or even at other times. thank you for keeping us updated as we really feel like your family who wants to see tehilla grow up healthy and happy! when you write about tehilla in school or trouble she gets into, we get excited and happy for your family! when you write about her hard days, we try to feel the pain with you. may we only share good times together.

  2. I'm new to the blog. Refuah shleimah!

  3. Dear Shoshana, you are always in my thoughts and prayers. Even when it is unsaid, those of us who have come to love your family know the shadow that hangs over all of you. Tehilla is a miracle -- and the thousands of people worldwide who have prayed for her is also a miracle. You are not alone, even when you feel the most alone. Of course we will pray for you -- all of you. May you have a joyous Purim, and may this latest trial soon be behind you.