Simple, happy, and hard

I volunteered at the Fall Festival at Max’s school today. I signed up during the confidence high that was planning the Ladybug Jam, but I started to regret it a bit as we got closer to the day. I am exhausted from the Heart Walk and Ladybug Jam. I am distressed from losing a dear friend this week who evidently didn’t regard our friendship as highly as I did. I am experiencing a resurgence of strong grief for Lucy. My hormones are making my anxiety spike. It has just been a hard, hard week.

But I went. First thing that happened was a pregnant woman sat at the booth next to me. Sigh.

Then another one looked like she was going to sit at my booth with me. For once, God seemed to spare me and she headed to the one on the other side.

The woman who joined me was perfectly nice. She wasn’t visibly pregnant. But within five minutes, the inevitable question came up.

“Do you have two kids?”

“I did” slipped out before I thought about phraseology.

She gave me a startled look.

“My daughter died last May.”

I told her not to feel bad, that I get asked that question all the time. And it’s true. I do. The woman who scheduled our flu shots at ARC asked me if there was “another child”. I guess Lucy’s name popped up in our file. Seriously, can’t they put a big “DECEASED” next to her name, so people won’t ask? Why did she think I didn’t mention her myself? Did she think Max was our favorite and we only vaccinate him or something?

A little gallows humor there. It does help at times.

Anyway, the kids came in and were so cute and excited. They were the two and three-year-olds, I think. I started to have fun.

Then, the 18 month-2 year class arrived. They are so darling, but they break my heart. Lucy would be that age now. She might have been in their class if she had been healthy.

I thought about ducking out, but I soldiered through. I was so ready for them to leave, though. I started to feel that numb, shaky feeling in my extremities that I felt when we were interviewed by the transplant team last March and after Lucy died. I felt nauseous and tired. I also felt a desperate desire to pick them up and hug and squeeze them. It kills me that there isn’t someone that age in this world who belongs to me anymore. The first pregnant mom walked over and picked up her little boy in that group and held him close. I thought about how I would never hold and comfort Lucy that way again.

I tried so hard to picture Lucy with them. I tried to picture her walking around and seeing me and running over to hug me. I couldn’t quite see it today. She was turning into a little girl when she died, but I still saw her as a baby, since she couldn’t even crawl, thanks to her vicious disease.

They finally left and Max’s class came in. I was so glad to see him.  I felt so bereft before he got there and it helped. He seemed proud to have me there. He enjoyed the games and didn’t fuss when he had to go back to his room. I was so proud of him.

That is my life. The simple, happy things are hard. Pain is almost always on the heels of happiness. But I think I am glad I went.  

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Walking in the Footsteps of my Former Self

I went back to Little Tesoros (the place where Lucy had physical and occupational therapy) for the first time this morning. I haven’t been there since her last therapy session two days before she died.

I remember driving into that parking lot with my two kids. It was cold then, too. I remember wiping them down with Wet Wipes repeatedly to protect from germs. I remember skirting the smoking section on the way to the door. I remember the white blossoms from the tree out back blanketing the car by the end of the session.

I remember walking up to those glass doors every time and seeing the reflection of me with Max’s hand in mine, Lucy on my left hip. Seeing that reflection made me forget my worries for a moment every time. One of the last times, Max was running next to me laughing.

I pulled into a parking space, texted all of this to my husband, and cried. Then I drove away.

I went back to Dell Children’s last August. It was the first time since Lucy died. It was a few days before I found out Baby Bean was dead. That’s why I haven’t written about it yet. I have felt drawn there since Lucy died. It feels like home in a strange way. It feels like part of her is there and I can find her somehow. Weirdly enough, I almost look forward to spending the night there for Max’s tonsillectomy. I know it will be traumatic and yet, it will feel like we are all together again. We will be back in the place where we spent so much time with Lucy.

They have a beautiful new Healing Garden. They were building it during Lucy’s time there. You should definitely check it out if you get the chance. 

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I wanted to go to Lucy’s old room in the PICU, but I don’t think you can go in there without permission. I did visit the waiting area where we spent a considerable amount of time waiting when she was admitted last February. Those were the last moments our family would really spend together for three weeks. I can feel that very strongly there. Others see an empty, annoying waiting room. But I see treasured, albeit sad, memories there.

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I get so close to finding Lucy. She is always here. She just is not dead to me. She is never far from my thoughts. She is constantly by my side. But I can’t touch her. I can’t see her. She is gone forever, yet she is ever present. Sometimes, as I move forward, I will continue to step back, and retrace the steps of my former self, and try to reach her through the veil, if only for just a moment.

Proud

Team Lucy’s journey (the first phase of it anyway) culminates with the Heart Walk tomorrow. I am so excited and so sad. I know the Heart Walk is going to be a wonderful day to celebrate Lucy and all of those we have loved and lost to heart ailments. It will also be a wonderful day to celebrate survivors. But I am trying to figure out where Team Lucy will go in the future without taking myself too far out of enjoying my present success.

The Team has given me a way to mother Lucy in the five months since she died. The fact is, I am still and will always be her mother. But it is really hard to figure out how to mother someone who is dead. And the Team has let me do that.

The Ladybug Jam last weekend was the birthday party we will not get to give her this year. In fact, it even happened on the five-month anniversary of her death. Even though we are planning a celebration for her actual birthday in February, it was wonderful to celebrate her life by trying to give hope to others last Saturday. I worked harder on that event than on any birthday party and almost even more than my wedding and I am so proud of the way it turned out. I am so proud that I had a wonderful core Team of friends who helped me with it as well.

I am very proud that I created this Team and just jumped in, even though I didn’t know what I was doing. I never dreamed it would be this successful. I was just hoping to have lots of bodies in the Walk wearing shirts with Lucy’s name and the words “pediatric cardiomyopathy”. And we are going to have that. But we have also raised over $14,000. Our original goal was $3000 and I thought it might be difficult to even make that. I am so humbled and touched by the enthusiastic response of family, friends, and people we don’t even know. I barely had to do anything besides post on Facebook to raise the bulk of this money. People just wanted to help. Team Lucy is proof that every person can make a difference and every donation matters, no matter how small.

I am very proud that I just jumped in and made the Ladybug Jam happen, even though I have never done anything like that before. I am a great planner and I love planning events. But I had to step out of my comfort zone for this one. I had to ask for help. I had to delegate to people and trust them to do the job right. I had to ask people to donate things for free. All of those tasks are ones I have been very uncomfortable with in the past. But I had to do it. For Lucy and myself. And I am so glad I did. I hesitated and changed my mind a million times, but I finally did it.

I am proud that I brought Lucy into this world. It was an incredibly hard pregnancy. I was in so much physical pain for weeks after she was born. It was very hard to be crushed with her diagnosis right when my physical pain finally went away. It was so hard to say good-bye. But every moment of it was worth it to be her mother. I am so proud to be the mother of a person who has had such an impact on the world. She was so special and she has inspired so many. I hope part of her legacy will be a cure for cardiomyopathy. I am going to do my best to make it so. But she has already left a legacy with her sweetness and bravery and purity of heart. She really was perfect. She never had a chance to be imperfect and I hate that. But every single bit of pain was worth it to be her mother. And if others can be helped through her life and death, it will almost have been worth it to lose her. Almost.

I tried to think of clever names for this team. Lucy’s Ladybugs, Lucy’s Lionhearts. Nothing seemed quite right and I finally just went with Team Lucy. And it is the perfect name. The two reasons for our success are right there: Lucy herself and the wonderful Team of people who signed up to walk as well as everyone who has donated and helped spread the word. Every single one of you is a member of the original Team Lucy, no matter whether you are listed on the Team page right now or you walk tomorrow.

This blog post has ended up being a love letter to myself basically. I am going to write a post soon thanking absolutely everyone who contributed to Team Lucy and the Ladybug Jam. But for now, I needed to give this love to myself. I needed to say to the world how proud of myself I am. I needed to own this success. I did not make the team successful on my own, but I brought Lucy into the world and I created the Team. I will never stop talking about Lucy and pediatric cardiomyopathy to anyone who will listen. (And even some who don’t want to.) I am very, very proud of that.

The Heart Walk is tomorrow. If you have not donated yet or would like to help some more, please visit our page: http://social.heart.org/cuY75Vg

One more time, the last for now: GO TEAM LUCY!!!

Driven

I’ve missed this blog. I haven’t written in over a month. That’s the longest I’ve gone since Lucy died. Lest you think I have forgotten my promise to her, I will assure you have not. I have been working on another Lucy-related project –Team Lucy’s Ladybug Jam, a family music festival fundraiser for our Heart Walk team. I have been working on it nonstop, partly because we started a bit late.

You might think the other reason I am driven about the Ladybug Jam is obvious, but I don’t think it is what you expect. The other reason (one of them) is guilt.

One of the things Chris and I hear frequently from others is how strong they think we are. You would think this would be nice to hear (and it is), but it’s not strictly true. The fact is, we weren’t always strong during Lucy’s illness and we haven’t always been strong since. We aren’t heroes or saints. I always thought being a parent would awaken unselfishness in you, especially if your child has a serious illness. But you aren’t always unselfish. You still get selfish. You get tired. Sometimes you just don’t want to deal with any of it anymore. You still want a break, even when you know your kid could die. And sometimes, you want to run.

I remember those nights in the hospital with Lucy screaming in her crib while I huddled on the pull-out bed and cried. I couldn’t soothe her. She didn’t want to be held. She didn’t want to rock. She was tethered to wires, so I couldn’t walk the room or the halls with her. I couldn’t leave her alone in the room. I couldn’t soothe her and sometimes I didn’t want to. I just wanted her to make it easy on me and just go to sleep. Because I needed to sleep, so I could face another day of sitting in a hospital room.

I remember one night in Dallas when I reached the end of my rope. I don’t remember the precipitating event. I just remember that I wanted to run. I wanted to run out into dark, unfamiliar downtown Dallas and just keep going. I actually sat down on the pull-out bed and put on my shoes, with Chris worriedly asking me the whole time where I was going and what I was doing. I didn’t know. I was just desperate. I had had it. I wanted to run.

I feel guilty about all of that. I did not do the things I feel a parent of a seriously ill child should do. I didn’t stay up late reading all the latest medical studies.  I didn’t get her into some cutting edge new treatment that miraculously saved her life. (It doesn’t exist, but even so.) It was all I could do to keep my head above water. It was all I could do to take care of a toddler and a baby who had a chronic illness and was deteriorating before my eyes. I know I did the best I could. But I could have done more if I really tried. And I didn’t. I just survived as best I could. It was all I could do to do what the doctors and physical therapists said and try to keep her alive. I didn’t have anything left to actually fight the disease.

That is why I am driven now. I want to make up for what I didn’t do when she was here. I want to find the cure I didn’t look hard enough for while she was still here.

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