Three weeks ago, just a few days before Pesach (Passover), Tehilla gave us a big scare. She had a cyanotic episode; she turned blue and her oxygen saturation dropped. We now kinda know that it was kinda caused by a sudden ear infection. Kinda.
Tehilla is now two and a half. We spent the first six months of her life in a phase called interstage. We were always on high alert, always packed for a trip to the ER and always not ready to say goodbye to her. It was a chaotic time of our lives and dull as heck. We saw no friends, we went to no get togethers. We were alone. Just our family and some infrequent visits from extended grown-up family. We spent about 80% of that time with our adrenaline rushing. It was hard and we made it through. Tehilla made it through.
She had her second surgery (not the Glenn) and things calmed down, to a certain extent, until she was in heart failure and doing terribly and her medical team made the decision to go ahead with her Glenn surgery, despite her chances of survival being very very low.
And then she survived that. Our insanely miraculous child. She was released quite quickly and we were careful post-op...but then normal life happened. She started to grow, she started to develop. She was walking and finally talking and getting into mischief like normal toddlers should.
And yes, we had the cardiology appointments, and the medicine changes. Yes, there were fears and worries at times. Many frequent times, but we settled into a new norm. A post-Glenn norm.
So we were unprepared for that blue episode a few weeks ago. It left us unhinged and terrified. It reminded us of the vulnerability of Tehilla's situation. It didn't wear off so easily. That shaky feeling. It stayed around for some time and had me checking on Tehilla twice as much, peaking in on her while she slept.
It reminded me that all I have is today. All I can do is hope for tomorrow, but today, everyone is healthy. Today, all three of my kids are together at home, having more-or-less normal childhoods. Today is a blessing.
The first day of Chol Hamoaid, we went to Nitzanim beach. The water was beautiful and the sand was soft. We sat and ate matzah, and collected sea shells. The beach is a very happy place for me. It is the first place that I ever let go. Here is a link to that post: Amazing Weekend. It is the first place that I forgot that I was a heart mom, holding a heart baby, in our scary heart world. I was just a mother, snuggling up with her daughter, and relaxing at the beach.
Every time that we are at the beach, I am able to let down my guard. I am able to do some soul-searching and reflection. This past time was no exception.
The water was too cold to comfortably enjoy. Mechal and I stood at the water's edge and held hands. We counted to three and ran into the freezing water. We would shriek and run out and wait a few minutes and try again. We did this a few times, and then Mechal had enough. But I stood there and counted aloud to three and then ran into the water until it was over my stomach. I didn't run out. I let the cold surround me and I felt more alive then I've ever felt. My blood pumping to warm my cold body and I felt so alert, so aware of myself- my life.
Life became so clear at that moment. I was done being worried. I thanked G-d for all the blessings in my life. I asked that Tehilla continue to be a source of praise for Him, as we prepare for her next surgery. I left the water feeling safe and strong again.