Hard, but worth it

I had a hard time going to sleep last night. I was on my way there, but I started thinking about fall. I love fall- the beautiful weather, football, holidays, pumpkin-flavored food everywhere.

But I started thinking about how Lucy won’t be there for any of it. She will never wear the Pebbles costume I bought a year in advance before I knew anything was wrong. I ended up wide awake and upset.

She got exactly one holiday season. We got seven holidays with her before she was diagnosed. Valentine’s Day, St. Patrick’s Day, Easter, Mother’s Day, Father’s Day, Fourth of July, and Halloween. After the diagnosis, it seemed like every holiday and special occasion was marred by it somehow.

For me anyway, there was an undercurrent of sadness on every special day, even her first birthday. (New Year’s Eve was an exception for some reason.) And it seemed like we ALWAYS got bad news from her doctor before something special we had planned. We found out she had plateaued (meaning the doctor now thought it would be a chronic condition or worse) a week before Christmas. We had thought she was going to recover completely, so that was a hard blow. We had been released from a trap, just to be yanked back in, right before her first Christmas.

We got disappointing news from the doctor right before her first haircut and her first birthday. I can tell in all the pictures of her first haircut that I had spent most of the day before crying. I usually spent the day crying after appointments with the cardiologist. (I looked the same way in the pictures we took when she was readmitted to Dell in February. We knew it was a bad sign she had to go back so soon.)

She had to be hospitalized right after our anniversary.

She ran a fever on her second Easter, so there was another threat of hospitalization.

She died on Mother’s Day, three days after my birthday.

To be clear, I in no way blame Lucy for this. She did not dampen our holidays and special occasions. I treasure every memory with her from every one. It was dilated cardiomyopathy that wrecked things.

Last year, I started planning Halloween in August. I picked the most adorable ladybug costume for her. I even wore a costume. I was a bumblebee. I didn’t plan to coordinate with Lucy, but was delighted with the result.  I was so happy and excited.

Halloween was on a Wednesday. She was diagnosed and admitted to the hospital the following Monday. November 5.

Those first days in the hospital, I kept looking at the pictures taken on Halloween. We had no idea anything was wrong. We had no idea our world was about to fall apart. All I wanted was to be those people again.

There have only been three times I wanted so badly to get back into the previous week. One was after my nervous breakdown. The second was after Lucy was diagnosed. The third was after she died. It was odd after she died, though. I wanted her back, of course, but I didn’t exactly want to go back. I didn’t want to have the uncertainty about her future back. I didn’t want to find her in her crib again. I didn’t want to have to dread and experience her death again. Every single bit of that was worth it to have her here. But once the blow had landed, I just wanted to rest. I was so tired and bewildered from the uncertainty, the worry, the fear, the medicines three times a day, driving to a pharmacy in Cedar Park that had a compounding room to get her meds, the once-monthly Synagis shots in winter. It had been even more intense since she was discharged from the hospital in Dallas. Added to the three times daily medications and jaunts to the Cedar Park pharmacy were weekly cardiologist visits, the twice-weekly physical therapy appointments, the PT exercises at home, the monthly visits to the transplant team, planning for the upheaval of moving closer to Dallas to wait for transplant. Suddenly, all of that was done. I missed all of it, because it was part of caring for her. I was happy to do all of it for her. Yet, I couldn’t help but be relieved that she and we didn’t have to do all that anymore. It was hard and it was just going to get harder. It’s a terrible thing to feel any kind of relief when your child dies. But she was going to struggle to survive her whole life with no guarantee of any reward. Part of me is very glad she never had to go through that and she never had to know the reality of her situation. I’m glad we didn’t have to tell her the truth about her situation. I wish she was still here. But part of me is glad we are not on that path anymore.

For a decade after my nervous breakdown, I never felt like myself. It is a terrible, terrible thing to never feel like yourself. To feel like you have been changed into a different person overnight without your consent. To feel like you and your previous life are completely inaccessible no matter how hard you try to regain them.

That is pretty much what it is like now that Lucy is gone. I eventually began to regain myself after my breakdown. It is an ongoing process. But she will never come back. The relief over her liberation and ours is still there from time to time (with the requisite accompanying guilt for feeling that way), but it is starting to sink in that she is really gone forever. I can see our life with her so clearly. I can imagine what she would be like now, although I wonder whether to imagine her well or the way she actually was. I can see and touch the Pebbles costume I bought a year in advance for a Halloween that will now never happen for her. I can see it all, but I cannot actually have it. I’m doomed to a futile longing I am already far too familiar with to bother fighting. In a weird way that makes it easier to bear. I had already had the rug violently yanked out from under me twice before. And it was unexpected both times. Even though we had no idea that Lucy would die so soon, we knew it was very likely we would lose her at some point. I guess I was somewhat more prepared for her death than I was for my breakdown or her diagnosis. But this is final in a way that the other two were not. And it still does not seem real some of the time. I mourned the loss of her health and possible loss of her future when she was diagnosed and then just hoped and believed she would be fine. And I suppose she is, but this is not what I had in mind when I used my birthday wish to wish she would get better. None of this is what I had in mind. But it’s mine and I have to figure out how to live with it. Just like I figured out how to live with her illness and find joy in life and gratitude for the lessons I learned from it.

It is a relief to finally let on to all of you how hard it all actually was. To admit it to myself. It was so hard. And it still is sometimes.

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1 Comment

  1. Jerry said,

    August 1, 2013 at 10:37 pm

    Sis i dont know what to say other than I LOVE YOU SO VERY MUCH. You will always have this dull ache in your heart when it comes to Lucy. Lucy is an angel and God needed her with him. I hope that makes since to you. She sits in a paradise where she feels no pain and can watch over all of us.


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