Friday, September 18, 2015
Well friends, it's been a year. A year since we went into the hospital with pneumonia and came out with a tracheostomy. A year since Yitzi could communicate with his phone to the whole world. A year since he could drive anywhere in his wheelchair by himself. A year since I was enough to take care of him.
We went into the hospital one way and came out totally different. The doctor told me that his life will be easier but mine would get infinitely harder. He told it to me as a warning, like a gentle question. "Can you handle that?" Of course, do whatever it takes. Thinking I understood what that means is like imagining you will handle childbirth. It was shocking. It took a long while to get used to this new life, for Yitzi, myself, our families and friends. The first month was a page out of a horror story. The next eight months out of a tragedy. The last few months have been good, thank G-d. What is good? We are managing. We have reliable help, and there have been no traumas. We are steady and managing. The kids started a new year, life is continuing and we are taking part in it. Yitzi has mastered the art of communicating with his eye gaze computer and has more guest then most people I know. He has a very active social life and has found a way to balance all the changes he has been given better then imaginable. He is still a fabulous teacher, an involved father and a romantic husband. He learns daily and is as funny as ever. He even fixed the air conditioner this week. He told us the problem and how to fix it. He is annoyingly always right and if only my brain worked half as well as his does, I would be in pretty good shape. He writes me a letter every Friday, and writes the kids as well. He is in touch with many of their teachers and checks up on them weekly. I am in awe of him. When we got married, I knew how special and unique he is, yet watching it to this level is absolutely a marvel. That being said, I so miss the days when it wasn't heroic to smile and to laugh and to just enjoy the family. When it didn't take superhuman strength to do everyday things. When there was no clock reminding us to enjoy every second. When we were just us. Although we are doing the best we can, we long for the day where we can breath a sigh of relief. Where our hopes have changed from thoughts and prayers to actions and reality. Where we can speak to each other and sing together. Where we can dance and play guitar, where we can be like we were, yet so much better for all we have experienced.
Tuesday, September 1, 2015
There are so many songs and poems about dying for someone we love. Perhaps that is difficult, but not the most difficult. My struggle is living for the one I love.
I spend many hours a day sitting with my husband. We talk, listen to lectures and music or just sit quietly. That is the easy part of the day. Walking out of the room and into the world is the hard part. He wants me to enjoy life, to grow and to experience more. I want to do that with him. I was never the type to adventure by myself, we did everything together, and always dreamed of what else we would do once the kids are a bit older. I tried doing some things with a friend and I would put on my brave face, and then the second I come home go running into his room crying. It wasn't my friend's fault, she is just not Yitzi. It's even harder when well meaning people tell me how brave I am to go out by myself, please don't remind me that I am by myself. I must be very stubborn to be still holding on to option A. (I heard this term from Sheryl Sandberg who lost her husband and had to try option B, to raise her kids and live her life without him) I try to find things to do in his room. I painted a table last week, that was fun. When he has physical therapy, I do Pilates. Perhaps I will try guitar lessons, he always wanted to teach me, we just never had the time. Yet there are many more things outside of his room. I have gone into the outside scary world and tried to "live" for both of us. Sometimes it feels miserable and sometimes I enjoy it. It always comes at a price of exhaustion. Like a vulnerability hangover. It takes so much energy to hold my head up and smile, even when I am really happy to be doing what I am doing, it comes at a cost. Recently I went to a very close friend's wedding. I was away for three days. I really was so happy to be at the wedding, to meet the family I have heard so much about, but the next day was so hard. To go from such joy back to our reality, to remember the dreams of our wedding, to imagine my kids weddings...
I still think it is worth it. Experience joy and meet new people even if it costs a lot. No matter how much we would like it to, life does not stand still. On my birthday this year I wrote about beginning this brave journey of finding out how to live a good and productive life despite my circumstances. It's like a slow waltz with one step in one direction and then in another. And let's just say, my dancing skills are laughable. My hope is that I will be able to function in both worlds adequately. With my husband in my safe place and out in the world, where our children are heading. As the new year approaches, I look back at the last year and let's be honest, it was hard. Not the type of hard I have the strength to repeat. I am tired. I stood still for much of this year and my kids all moved forward. My oldest, who literally saved me much of the year, has left to Jerusalem. While she learns and grows, she will be praying in all of the most holy sites we have daily. She is so brave and positive. Always happy and loves to make others happy - just like her Daddy. My other kids are getting older and learning more and are thankfully, really good kids. I have been so blessed in so many ways and I am so grateful to G-d for what he has given me. But please G-d, make this year better then last year. As much faith as You have in me, I have more in You.
May we all be blessed with a good and sweet year. Yitzi always says that sweetness comes from having what you need. Being healthy, having resources to care for your family, and having family to care for. May it be so sweet.