Thirty-three

Written by a Mom who recently lost her daughter to CDH. Its a long read, followed by a good cry. But I ask you to take the time and tears to read the whole thing. My daughter will be born with CDH in just over 65 hours.

Most of you know I'm an English teacher. Like so many of my other teacher friends, I sometimes struggle to get my message across to my students. People just don't want to learn anymore or they couldn't care less about improving their lives. We only had Penelope for thirty-three days, but in her brief time on Earth she taught us so many things. She didn't have to lecture. She didn't have to make a PowerPoint. She didn't even have to speak, but she still managed to touch so many lives through her very existence. Here are thirty-three things she taught me in thirty-three days:

1. She taught me to write again. I studied English literature for six years in college and I used to love to write. I had professors politely tell me that I was horrible at writing fiction and poetry, but I could write non-fiction like nobody's business. Then I gave it up. I just never took the time. Yet when I started writing the notes while she was in the hospital (for no one's benefit but my own, to vent to some imaginary, faceless person), people were moved. Don't get me wrong -- I'm no writing prodigy. But she taught me to love it again.
2. She taught me what love means. The love between a parent and child is like no other bond on Earth. It is all-encompassing. It cannot be broken. It cannot fade. It is a physical love as much as emotional. It made me physically ill any time I had to be away from her. Words cannot describe the feeling properly, but it was like I had sliced myself in half and there was a magnet trying to reunite the two pieces.
3. She taught me the meaning of "perfection." I watched my newborn child swell to probably thirty pounds or more on ECMO, but she was still the most perfect thing I have ever seen in my life. Tubes, monitors, IVs, and tape could not hide that.
4. She taught me never to say "ow" again when I stub my toe. Natural birth. No epidural. No pain medicine. Enough said.
5. She taught me that I don't need television. I went 33 days without cutting on a single television screen and, honestly, never thought about it once. There was some cheating, however, in that I rented a movie from Redbox one night and watched it. But that's not tv, so I guess it's ok ;)
6. She taught me that sometimes it's ok to be girly. Many of you know I am anti-all things girly. I hate pink. I hate high heels. I hate fashion in general. But when Penelope could not wear clothes, I wanted nothing more than to put little frilly bows in her hair every day. She had a different bow for every day. Some of them were even pink.
7. She taught me to be patient. I always said I wanted a May baby and knew it would be pushing it even though they tried to tell me I wasn't due until the middle of May. Come labor on April 30, she took her sweet time to make it an hour and twelve minutes into May.
8. She taught me the meaning of fear. From the first moments of life when I waited to hear a cry until the last cap-off attempt that failed so horribly, I feared for the life of my child. I never wanted to leave her side because I always feared she would die while I was gone. This is not the same fear I have of, say, clowns. Clowns give me the creeps and I don't like to look at them. The fear I felt with Penelope was a deep, primal fear. It lives in your soul.
9. She taught me the insignificance of time. The only way I knew it was day or night was by who was in the room -- day or night shift. All I knew was that my baby was alive for another minute and it did not matter when that minute was.
10. She taught me to love my parents more. For those who don't know, I'm a bit accident-prone. I have been in the hospital countless times for countless injuries, and I always took it for granted that they would take care of me. Not only that, but I put my parents through hell as a teenager and young adult. You name it, I did it. Again, I always took it for granted that they would love me no matter what. I never understood how that was possible until it was my child. My hell. I love you mom and dad.
11. She taught me to love my sister. Ashley and I are polar opposites. Always have been. Yet we found something we have in common when Penelope was alive. We are both strong. We can both dry our tears and fight. We can just be in the same room together and give each other strength. I love you big sister. Thank you.
12. She taught me to love my husband even more. Of course I love DJ -- I married him! But when you take those wedding vows and say "for better or worse," you assume "worse" covers something like money problems or infidelity. No one goes into it thinking "the death of a child." I have never loved my husband as much as I have loved him since May 1. He had to be so strong for us and go back to work so we could pay bills. I still don't know how he does it. I don't want to leave the house now. But I can tell you this: I didn't want anyone else by my side as much as I wanted DJ. I love you babe.
13. She taught me medicine! I think I can be a doctor now. By the end, I could give reports at shift change as well as anyone!
14. She taught me that "House" is not accurate. The episode with the baby on ECMO was on the other day. Stupid "House." That's not what ECMO babies look like. I wish that's what ECMO babies looked like.
15. She taught me that a baby that has been lying in a bed for 33 days smells exactly like a limb that has been in a cast. When I got to hold my baby, she didn't smell like baby powder. She didn't smell like Johnson's baby wash. She smelled like my arm when they finally took off the cast.
16. She taught me that being a nurse is the hardest job in the world. Now don't start hating. I know teachers have it rough. I know anyone who works with the public has it rough. But these nurses, especially those that work in any kind of ICU, have to deal with death almost every day. I don't know how they do it. They work long shifts, they get covered in all kinds of bodily fluids, and sometimes they still lose. And speaking as someone who feels like I basically lived in the hospital for a month, it is the nurses to whom the families turn for support. Some of those women will always be very dear to me because they cared for her. Not in the sense of "caring for a patient," but in the sense of LOVE. They loved that baby and I know it broke their hearts, too, that she didn't make it.
17. She taught me what a respiratory technician is! I honestly never knew there were people whose whole job was dedicated to ventilators and, in Penelope's case, ECMO machines. And let me tell you, I am not a "hugger" but one of the best moments of Penelope's last day was when one of the technicians, Lisa, practically came running into the room because she had just come in for night shift and thought she had missed saying goodbye to Penelope. She is such a good, Christian woman and she just cried with us and told us how sorry she was and how much she loved Penelope. That meant so much to me and it still does. I will never forget.
18. She taught me the power of prayer. I had always heard of people saying they were "filled with the spirit," but I will be honest and say I didn't really know what that meant. Sure, I had been moved to tears before during church, but nothing as powerful as what I felt the days Penelope was alive. Everyone kept wondering how I was so strong. How I managed to BREATHE much less stay rational enough to watch over Penelope. It's because I could feel it. I could feel people praying for her every moment of every day. I knew so many people, many who had never met her or even ME, were praying for her at that moment. Any given moment.
19. She taught me the meaning of "rage." One day a nurse came to do a "skin check" on her to make sure she wasn't getting bedsores. This involved picking her up and tipping her over. This made the cannula site (where the ECMO tubes were inserted) start to bleed and I went white hot. I had no control. I wanted to kick that nurse's teeth in "American History X" style. Instead, I just cried. I cried because I was helpless.
20. She taught me trust in people. Anyone can tell you I did not leave her side for the first several days except to eat, pump, and use the restroom. Everyone kept telling me it was ok to leave, but I always thought someone would screw up while I was gone and I would lose her. Sorry Brenner friends -- nothing personal. But after a while, I saw how amazing nurses and therapists can be. Don't get me wrong, doctors are great too, but we all know it is the nurses and, in Penelope's case, respiratory therapists who do all the work. Each and every one of them is an angel on Earth. They took such good care of her that I was eventually able to go get real sleep on a bed instead of a plastic couch.
21. She taught me trust in God. As I have told some of you, I knew from the day they diagnosed Penelope with CDH that she wasn't going to make it. I fought that and I fought it hard, but deep inside of me I KNEW. Of course they found the hernia early enough that abortion was still a legal option and I'm not going to lie -- I battled that. Not for me, but for her. I made the mistake of googling CDH and found all these horrible stories about how disabled many of the children who survive (if they're lucky) can be. Of course I have since come to discover that this is not always the case, but I briefly wondered if I should save her the misery. Briefly. Then everything in my body and mind told me that was not the path to take. I knew she wasn't going to make it, but neither will you or I. Eventually, none of us "make it." But if God took that path and said "what's the use? They are all going to suffer" then neither of us would be here now. So not only did I know she deserved to fulfill whatever purpose her life would serve, but I decided to put it all in God's hands. The OB always offered to schedule a c-section or induce on a certain day. I'm NOT one of those women who is going to preach to you that epidurals are wrong, hospitals are wrong, induction is wrong, etc. To each her own. I'll tell you right now that had Penelope been healthy I would have been asking for the drugs when I signed the registration papers at the hospital. But I knew that WHEN she would have to leave us, I would be filled with "what if"s. At least I was able to knock off the "what if I hadn't had an epidural?" question. She was in God's hands the whole time and there was nothing I could do to change it.
22. She taught me the meaning of friendship. We all have "friends" on facebook to whom we were never really close or maybe never even met. But when Penelope was born, I like to say "all heaven broke loose." The messages came pouring in from across the GLOBE. People who I thought hated me still loved Penelope. She even reunited me with an old friend from whom I had grown apart since high school (I'm looking at you, Kerry!). She is a labor and delivery nurse so she was able to help me with medical issues, but she was so much more than that. She and I have always been very similar in the ways we think and she, too, knew that Penelope was not going to make it. She was one of the few people who, instead of trying to pound it in my head that everything was going to be fine, simply replied "I'm scared, too, friend." That one text meant so much to me. And of course there is Brittany who, heaven help her, stood by me through the whole pregnancy and even helped Penelope come into the world. For those wondering how I managed to make it through with no pain meds, look to Brittany. Like Kerry, she wasn't sugarcoating anything with me from the start. She told me to suck it up and reminded me of my plan. Once Penelope was out, her whole focus was on me. As I lied there bleeding uncontrollably (thinking, of course, that everyone did that), she held my hand and kept me strong. She has kept me strong in so many ways. And Renee, my counselor since childhood who now gets paid to do it! She was the first to tell me when I expressed my fears about Penelope's quality of life while pregnant that each of us has a purpose in life and Penelope must be given the chance to fulfill hers, even if it will be hard. I know it broke her heart to do so, but she was also the one who kept most of you updated during the last days of Penelope's life. She lives halfway across the country, but it was like she was there being the person in the waiting room who has to give all the bad news. I could feel her strength even when she couldn't be there. To all three of you -- thank you. Thank you is not enough. I love you so much.
23. She taught me the inadequacy of "thank you" to express your love for people. There are no words. I'm an English teacher, but there are no words. To all the people, each and every one of you, who have done everything from think about us to hand us the death certificate, we love you.
24. She taught me to let go of pride. First, there was the loss of caring what I looked like. If you know my mother, you know I was raised that you don't go to the MAILBOX unless you have on your best clothes and full makeup. Yeah, that went immediately. Then there was my constant struggle of not crying in front of anyone. If you know my dad, you know where that came from! We're not big emotion-showers us Diaz girls. I think some of the doctors and nurses thought I was a bit strange because I didn't sit there and sob the whole time, but boy when I did... and now that she's gone, I have had to learn to let go of the biggest source of my pride -- the fact that I hate to ask for help. I think (and have always thought) that asking for help was a sign of weakness. Well, when it comes to mounting debt from medical bills on top of all the other bills since I can't teach summer school now (and NO I don't get paid like k-12 teachers do in the summer), I had to ask. Actually no. I take that back. I have never had to ask. People have just given. Family. Friends. Strangers. People have done fundraisers, love offerings, you name it. Every bone in my body wants to say "Thanks, but we don't need it!" but that would be a total lie. Lest you think I'm asking for donations now, though, rest assured that people are taking care of us. Once we reach the medical bills and regular bills, we are donating every single leftover penny to CHERUBS.
25. She taught me not to sweat the little things. When I say little things, I mean feet. Towards the end, as many of you can see from the pictures, Penelope's body started to form clots (an unfortunate side effect of ECMO). It's complicated and they never had enough time to figure out exactly what was going on, but basically her body sent the clots to her feet because they were "expendable." It started with her toes. In the last week or so, her toes started to turn black. Eventually they were declared goners. They would eventually fall off. Then it spread. It took several days to consume all her toes but less than twenty-four hours to take both her feet. That's why they're black in the pictures. Even if she had lived, chances are both her feet would have had to be amputated above the ankle. But you know what? I was fine with that. So be it. If she lived, we'd deal. Not sure I feel the same way about it now, but in fight mode I just brushed it aside as if it was nothing. What does that say for Penelope's situation that I didn't care if her FEET WERE CUT OFF as long as I kept my baby. On the last day it had moved to two fingers, too ...
26. She taught me the importance of laughter. I cannot tell you how much I love Tina Fey for writing Bossypants. I really must have looked like a mental patient laughing out loud in the same room as an ECMO baby, but I couldn't help it. That was about a week in and it felt soooo good to laugh. For one moment, just one at a time, to feel good again.
27. She taught me how great poop can be. Yes, poop. That was about the only milestone we ever got to see with her -- her first poop. I took a picture and I will cherish it for the rest of my life. Precious poop.
28. She taught me dedication. I had to be dedicated to so many things. Of course I had to stay by her side as much as possible. After a while I felt comfortable enough to go to the Ronald McDonald House for a few hours to sleep and shower, but other than that I never hesitated to stand up for her, ask questions, and ask MORE questions until someone could finally explain to me in lay terms what was going on. She also inspired my grandmother in Mexico to travel to a convent and lock herself away in prayer -- fasting and praying about nothing but Penelope for 24 hours. That's dedication. Not only to Penelope, but to our Heavenly Father.
29. She taught me that not all doctors have a "god complex." First, there was a night when Penelope was throwing one of her tantrums, refusing to be put down by the meds (even the paralytic), wiggling her head, and dropping her sats. Dr. Roberts, the ECMO fellow, was finally called in in the middle of the night and within moments had her calmed and back to normal. I was so relieved that I jokingly said "You're my hero, Dr. Roberts!" She didn't hesitate; she simply pointed up and said "HE is my hero, so thank him." Wow. Then, on the day we let Penelope go, Dr. Petty came in to talk to us about how there was nothing else they could do. Instead, he told us that Penelope would go to heaven now and there would be no more pain. And I'm going outside the 33 days by 2 now, but on the day of her funeral we also got a card from him. He wrote that we should turn to God with our worries because He knew our pain, having watched HIS only child die on the cross. Wow again. What great people there were taking care of our baby. I thank God EVERY day that they will go on to help other families.
30. She taught me what it means to be a woman. Being a woman is not starting your period. Being a woman is not growing boobs, wearing makeup, or smelling sweet. Being a woman is pain. Back in my tattoo-getting days, I saw several LARGE men break down while getting inked, but women could always take it like a champ. The same thing goes for emotion, too. Being a woman is a heavy burden. When you have to watch your child be in excruciating pain in the times that her tolerance demanded higher doses of morphine, that is pain. When you have to plot for several minutes to find a square inch of your child that you can touch that isn't covered in tubes, tape, or wires, that is pain. When you have to say the words "We are ready to let her go," THAT IS PAIN. But being a woman is what you do with that pain. You accept it. You don't fight it. You pull it inside you. You crush it into a ball, a burning ball of fire in your heart and you fight. You shake off the tears and you fight. Even in giving her to God, I fought back every tear and told her and myself that there was nothing to be sad about. She is with God now and that is nothing to be sad about.
31. She taught me the meaning behind "Why have you forsaken me?" I don't know where or when I heard it, but someone preached or I saw it in a movie or something about how when Jesus was asking that question on the cross, you need to imagine that God had to turn around because He couldn't watch. Those words never had so much meaning to me than when I wanted more than anything to be the one holding my child to my breast as she died. I didn't care that I was topless in a hospital. I didn't care that I was being covered in my daughter's blood. There was nowhere else I wanted to be more than anything in the world -- but I couldn't watch. I couldn't see. I could NOT look at her body as, for the first time, her face sat snuggling into my neck. Oh to feel her skin against mine was the most beautiful moment of my life. Knowing that the last sensation on her skin was that of my own, but I couldn't look. When she had finally passed, I had to close my eyes as the nurses took her body away to be cleaned. I couldn't look. I get it now, God. I get it.
32. She taught me that there is, beyond ANY shadow of a doubt, a heaven waiting for us. In the last few days, I reverted to being angry with God -- not because He was going to take her, but because He wouldn't hurry up and do it already. Watching her feet die was torture. I knew it must hurt SOOO badly and I couldn't do anything about it. I thought it was cruel of God to make her keep suffering, but I also could not bring myself to tell the doctors to cease treatment. So I did the only thing I could do -- I prayed. Only I no longer prayed for healing. I accepted that God was going to take her. I only asked that He would let us know when it was time to let her go. When the doctors pronounced that there was nothing else to do, I still fought. I told them they needed to max out all her pulmonary hypertension meds, lung steroids, EVERYTHING and let her try again. It didn't work. Not only did it not work, but she did much worse than she had ever done on an attempt to cap off. Then we knew it was the day. So we finally told them we were going to cease treatment, but we wanted to hold her finally, for the first time, before they stopped. DJ held her first for what seemed like five minutes but was really over an hour. Then they gave her to me. I finally got to hold my baby after 33 days. After what was probably 30 minutes or so, one of the ECMO technicians came in and said that if we were still sure we were going to cease treatment, there was no reason for them to leave her on the ventilator. The ECMO machine was oxygenating her blood, so she didn't need to breathe. They had already taken out her feeding tube at this point, but once they took out the ventilator tube, her face was finally tube-free for the first time since the first 10 seconds of her life. She was so beautiful. She was swollen, purple, and could barely open one eye, but she was more beautiful than she had ever been because I could see her mouth and she was in my arms. But to get to the point, about 40 minutes after that, I told DJ to start packing up the stuff from the room and moving it to the grieving room because I didn't want to stay in the room and see her as soon as she had passed (see above). So he packed everything up and hauled it off. While he was gone it was just she and I in the room. I prayed out loud, "God PLEASE. PLEASE tell me when it's time because I don't want to let her go." And she smiled. At first I thought "Oh, she must be pooping." But the smile got bigger. So big that I didn't know a 6 week old's mouth could move like that. Muscles she had never moved in her life. And she wouldn't stop. She simply closed her eyes and smiled so big. DJ came back about five minutes later and we were in awe. We just stared at her as she looked so happy for the first time in her life. I cannot describe to you how beautiful it was. Our baby girl could see heaven. I know the Lord was IN THAT ROOM right then. He already had her in His arms and she was smiling. We knew it was time and told them to shut off the machines. We all prayed so hard for a miracle while Penelope was still fighting, but it was not until the end that we got it. It was truly miraculous to see my child see heaven.
33. She taught me that the fight continues. I am throwing myself wholly into the Vivint contest. I know many of you will never read this because you've probably "Hidden" me from your walls with all my annoying reminders and requests to vote! Well, you've made it through this note, so here's another one. If this touched you, vote. It's all I want in the world right now. PLEASE go every single day and vote for CHERUBS so that we can make a small impact on the future of this defect. I am flat-out begging you. Please. www.voteforcdh.org

What did Penelope teach you?
Thank you and, as always, I love you all.
Samantha