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...

Barely Treading Water

So...I'm going to take this moment to take the biggest deep breath. *Ahhhh* That felt better.

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.

When filling amoxicillin for four of us and augmentin for the fifth, the pharmacist sympathetically smiled and said, "Tough start to winter, huh?"

I know, I know- count your blessings. And I do. I'm just so tired. So so tired.

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.

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.

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.

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.

Settling in

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.

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.

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.

Desat Judgements

About the moment that I stepped off the plane from England, everyone in our family got sick.

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.

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.

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.

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.

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.

We are so blessed to have a doctor who fully trusts our judgement and is willing to work with us.

Prayers that I'm right and we don't have to run to the ER tonight.

Miracleversary

They 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.

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.

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"...

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.

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.

I love you, blog family.