a week of plans and perspectives

The last time I wrote here, I was waiting for my in laws to come from the airport. They booked tickets when we bought our apartment and decided to make a Chanukas Habayis when they come Then, Alter needed to make a Siyum so we decided to make them both on the same night. We rarely get to be at events together so we made a date that worked for them and began to plan our party. Alter was, of course, very excited that his parents were coming and was talking about it for weeks. He had planned a whole itinerary for the 6 days they would be with us- things we would do together and places to take them. He made his transplant check up for the morning after they arrived so his mother could meet his doctor. Well, as we know too well, plans are simply just plans. God sometimes has a whole different agenda then what we write in our calendars. I went to work Tuesday morning and made Alter promise to call me as soon as he was finished at the Doctor. But time was ticking and I started getting a feeling that something was wrong, I knew he usually got out of there quickly and it seemed to be taking too long. My mother in law sent me a text that I should call Alter as soon as I was able to. I started getting a sick feeling in my stomach but had to continue to do my job and entertain the kids that had come to my activity. I tried so hard not to panic and finally, got to call him. He told me one of the most dreaded sentences a transplant patient can hear “I have fever.” The reason this is such a big issue is with a transplant patient, fever means infection, it’s not fever like a regular person getting fever. It’s very serious and you can’t wait around and see what will happen, you must find the source and treat it ASAP. So that meant Alter had to get admitted. I couldn’t believe what I was hearing. I had so many thoughts and questions swirling around in my head and I had only a few minutes to process everything before the next bunk was going to come in. Getting through that day was torture. I was so upset this was happening, I was scared and I wasn’t allowed to be with him because it’s dangerous for me. That night I lay in bed thinking. How crazy that Alter was so excited to spend time with his parents and had planned so much for this week  only to have to spend time with his mother in the hospital. She had basically gone from the plane straight to the hospital. But if I switched my perspective, how amazing is it that she was here in time for this hospitalization? If she wasn’t here, there would be no one to sit with Alter at Columbia! He hadn’t needed to be admitted since his hip surgery and the first day his mother is in NY, he has to be admitted. And as a Dr, my mother in law was able to make sure they were doing what they were supposed to do and was able to give her medical opinion. There definitely was planning going on, just not from a different, much greater source. We definitely saw Hashgacha Pratis. We didn’t know what was going to be, if the Chanukas Habayis was going to happen, how long Alter would have to stay there… Thank God, Alter improved quickly and was able to come home by the end of the week. We were able to make the most of the few days we had with my in-laws. The last night they were with us, we made a beautiful Siyum with family. 

Alter got up to speak and said how thankful we are for not only getting us to this point, but for giving him a Refuah shelaimah and allowing this event to happen. Following the Siyum was a beautiful Chanukas Habayis. So many people came to wish us Mazel tov. What a great way to start off in a new home! 

Thank God, everything worked out well and it was a really amazing night. I am so, so grateful for everything that happened. Although I would never have asked for Alter to end up with an infection, I’m thankful for the lessons we learned, the perspectives I had to see, for being able to see Yad Hashem in it all and of course, for Alter’s quick recovery. May we be able to share good news and keep making Simchas in our new home!!

thoughts on summer daze

Thank God, I am having a wonderful, very busy summer. Waking up every morning in a new, bright apartment in a new neighborhood is bh, amazing. This last month, as I have been sitting on our porch with a new view, so many thoughts come to mind. Of course, first and foremost, look at the view I have now compared to the view (or lack of) all those years ago in the hospital. The summer meant absolutely nothing to me except that it would be harder to breathe. My life was a merry-go-round of hospital admissions, feeling terribly sick, getting poked and prodded and overall, just trying to get through another day alive. A few weeks ago was my sister’s yartzheit. It always makes me wonder why I got lucky that the Organ Donation system worked in my favor but had completely different guidelines back then. I wish I had been more educated when she was alive, more aware of what was going on and that even though I knew I had the same illness as her, keeping my distance wasn’t exactly the answer to my problems of not getting symptoms. As I was very aware that CF is not catchy, it was simply going to happen as much as I hoped and wished it wouldn’t. But fear can make us do weird things and I was petrified that my life would get stolen as I watched that happen to her. I was young and wanted nothing more than to care about the things my friends cared about, unaware of the huge, ugly monster that was chasing me all of my life and would eventually catch up to me, not very long after it killed my sister. All of a sudden, life was so different. I could no longer play games, it had become a battle for me. I put on a show every day-on the outside, I had to keep up my appearance and actions with my peers and act as if I was the same person they knew me to be, but at the same time, come home every day and take off my “mask”,  that disease was slowly making its way through my body and taking more of a toll on me every single day. Eventually, it was too hard to keep up being an actress so I just didn’t tell anyone what was going on. Lucky for me, it was the time when everyone my age was busy with college and dating so no one really wondered what happened to me. I remember the hospital in Boston, my second home, so clearly. The summer before my transplant I was at my worst. I was in horrible shape, sucking in oxygen like a lion devouring its prey. My body was working so hard to breathe and yet no matter how much oxygen was getting into the tube through my nostrils, it just wasn’t enough. The thought that there were people who were enjpying themselves at the beach and swimming was a concept I just couldn’t comprehend, How were they able to walk, let alone swim?? My heart beat like a drum, it was racing all the time. I was always out of breath and exhausted and all I did with my time was lay in bed and watch different antibiotics snake through the tubes in my arms. I remember every detail like it was yesterday. The one thing I told myself was to never forget the nightmare I lived in because I want to appreciate everything so much more when I get to the other side. 

Let me just tell you how thankful I am that I am able to live by these words. It is amazing that I can do long lists of things each day after hanging by a thread, dangling off a cliff with the ocean ready to swallow me whole will always be nothing short of a miracle. I don’t know how I gathered enough strength to climb back up the other way but I will live each day acknowledging that miraculous gift. I recently heard of two girls I know whom have had double lung transplants but have had countless issues since. One girl has such bad rejection, she needs to start her whole transplant process again, in hopes of being listed a second time and she has only had her new lungs for less than two years. Hearing these things only makes me more grateful. Of course, I wonder why they can’t be out and about enjoying a life where breathing is easy and you don’t have to conserve energy where you have to decide what’s more important to spend the little bit you have on, tying your shoes or putting a pony in your hair. I will say that the summer after my transplant was no fun. I had to have emergency surgery and treatments and tests and my doctors could not figure out what’s wrong. But thank God, that too got resolved and that’s what I wish for these two young women, and whoever else needs it. I want them to get through these hurdles, climb these mountains but to be full of hope because that’s the key to getting through or over anything. Even though it looks like it may be a dead end, you can always reverse and go a different way. When we moved to this apartment, we saw how God could hand you an upgrade in life. Alter and I have bh, each experienced many upgrades throughout our lives and here is one we were given together. I hope we can all get upgrades, see life from a better view and then realize how far you were able to get so far in life. May we all get to have a great rest the of summer 2017 and share good news!