The Light

July 11, 2013

I have tried several times to sit down and write about the days surrounding Annie’s birthday, but the words just haven’t poured out like they did before. I think it’s because I don’t want this to be over, and I feel like when I tell this part of her story we are that much closer to the end. I know that this isn’t true. I know that Annie’s ripples have only just begun and Robert and I will never know how far they reach, but this is still incredibly difficult.

The day before Annie’s birthday was a blur. I found myself walking around in circles in my house. I would be standing in the middle of a room wondering what I was doing in there. I needed to pack the girls, and I needed them packed for quite a few days. One of the reasons my head was swimming was I didn’t know exactly what I needed to be doing. How many days were the girls going to stay with friends and family? I didn’t know. I didn’t know how long Annie would live, I didn’t know how long I would stay in the hospital, I didn’t know how long I would need peace and quiet in the house when we finally did come home before I was ready for our two little tornadoes to come back home… I didn’t know anything, so I packed as much as I could for them in their little Lightning McQueen and Mater suitcases so we would be ready for anything.

After I finished packing my big girls I got out Annie’s box. I needed to pack for my baby girl too. I placed it on the kitchen table and carefully folded her dress. I put it gently in the box along with her blanket, hat, and booties. Then I took them all out and rearranged them. I took them out again. I placed her few belongings in her box several different ways before I realized it would never be good enough. As I stared into that box that was perfectly arranged for the 10th time I felt my knees get weak, and I fell to the floor and sobbed. This was happening. In less than 24 hours, I would be holding my baby. I would know all of the unknowns in the coming hours.

That evening we loaded up Dylan and Harper Lou to take them to our friends’ house. They had never spent the night with anyone other than family before, but all of our family was planning on being at the hospital the next morning with us at 5:00 a.m. We had asked our dear friends (Mr. Casey and Ms. Amy to the girls) to watch them so the girls could get to the hospital right in time to meet their sister. Casey has been in the Air National Guard with us for years, and is like a brother to both Robert and myself. His amazing wife, Amy, who is a pre-k teacher and now a momma-to-be, was ready with several activities from cotton candy making to arts and crafts. The girls were in good hands and I didn’t worry about them for a second. Amy was also very understanding of my preferences (ok, demands) on what they wore and how their hair was to be fixed for their visit to the hospital the next day. I didn’t know if this was the only time the girls were going to be with their sister or not, and I wanted them to look pretty in the pictures. We kissed our girls goodbye and headed out to dinner.

During dinner both of our phones kept going off with messages, emails, texts, and phone calls. So many people wanted to let us know they were thinking of us. It’s so beautiful that from the moment we got Annie’s diagnosis to the moments before she was born, God showed us that we weren’t alone. Every text, every message, every phone call was from someone who loved us and loved our girl. I haven’t had the words or the energy to respond to every message, but please know that we have read every word. Each time someone reached out to us, it was gladly received. We didn’t talk much during dinner. I feel like we both had said all we needed to say. One of the few things we did talk about was how we both just felt we were begging God to be near to us the next day. I told Robert that it seemed so silly to beg for that comfort. God had been with us this entire time, so why on earth would he abandon us in that moment? Even though I knew God and my husband would be by my side the whole day, I was still asking them both just to be reassured. I also told Rob that in the past few days when I tried to pray, I couldn’t find any words to say. I know I was praying, and I know God knew my heart during that time, but I had nothing to say. I had prayed and asked for everything I could several times over. Inexplicably, I felt a huge amount of trust that we would all be ok.

That night, once I finally fell asleep, I slept pretty well. I woke up at 3:30 a.m. in order to get pretty for my girl and quadruple check that I had everything together. The last thing I needed was to be at the hospital and realize I had forgotten something imperative. I wasn’t nervous. We left our house at 4:30 a.m. and headed to the hospital. I remember looking out the window into the dark, watching the lights blur by. I said to Robert, “I wonder what the world is going to look like tomorrow.” I remember pulling into the parking lot. I remember looking into the front door of the hospital and seeing most of our family already waiting… That’s when I got nervous. This wasn’t just our baby. Everyone sitting in the lobby holding a steaming cup of coffee because it was so stinking early was there because they loved us and loved Annie enough to be there. That day didn’t belong to any of us. It belonged to her.

Once everyone arrived we were ushered into the chapel. We filled the darkened room, and we nervously looked around at each other. Robert thanked everyone for coming, and the chaplain prayed for us and anointed us with oil. We spent the next half hour in prayer, thanking God for covering us, begging God for strength and wisdom, and praising God for all that had been done in all of our lives these last few months. I felt the love in that room, and it was overpowering. During this part of the day there were tears and heartache, because we still didn’t know what was going to happen.

After we finished praying, we all headed upstairs to labor and delivery. Robert and I were excorted back to our room and everyone else was shown to the family room. The hospital staff had an entire family room blocked off and reserved for our visitors, and thank goodness for that, there are a lot of us.

Back in the room I put on the hospital gown, the nurses started my IV, and they drew about 100 vials of my blood to do some of the testing for Annie’s possible organ donation. Then we waited. Robert, myself, my older sister Jenny, and our friend Sarah who was taking our pictures waited for what seemed like forever. The nurses brought paper outfits for everyone to wear in the operating room. Dr. Smith kept checking in on us and every time he popped his head in we made fun of his OU surgical cap (when Harper Lou was born I jokingly demanded he take it off because I didn’t want that ugly thing to be the first thing my baby saw). Then before I knew it we were ready. I walked back to the OR with the nurses, climbed up on to the table, and things got rolling.

I think I was more nervous about the spinal block than anything else. There is something about a stranger sticking a huge needle into my spine that gives me the heebie jeebies. I’m always terrified I’m going to jerk at the last minute and be paralyzed for life or something. But everything went smoothly. It took awhile for me to get numb, which gave me more time to get anxious. When I was completely numb, they started the C-section and Robert finally got to come in.

We held hands, prayed, loved and kissed each other, and the room was absolutely silent. Before I knew it, I looked over and saw the body of my baby girl on the warmer. Annie Rachel Ahern came into this world at 8:36 a.m. on Wednesday, June 26. I heard Sarah clicking her camera like crazy, then she looked at me with tears in her eyes. Even though I couldn’t see the rest of her face because of her surgical mask, I could see in her eyes she was smiling from ear to ear. She nodded reassuringly toward me, then continued taking pictures. I don’t know how she did it. Through her tears of joy and also through several medical team members, she managed to capture all of the beauty in Annie’s first moments. There are shots of when they brought Annie over to me for the first time where Sarah had managed to photograph my beaming face in between a doctor, a nurse, Robert, and all kinds of equipment. That girl is really, really good at what she does.

Robert showed me a strength that day that I have never seen before. He was amazing. When we were looking through the pictures later it is obvious to me how much he values his job as protector of this family. Other than the first few moments, he was never more than an arms length away from me. He had his hands on Annie from the moment he was able. He served us in every way he knew how. I told my sister-in-law Laura who is engaged to be married, “Laura, you may think you love Caleb now, but you just wait until you see him holding your babies.” I have never been more in love with my husband. He is a pillar of strength for me and for our family. I have been told by several people over the years how much they admire Robert. He’s a man’s man. He built our house from the ground up with his bare hands. He has excelled at every sport he’s attempted (except for maybe golf). He LITERALLY just woke up one day and ran a marathon… Really. (It’s times like that when it’s a little tough to be married to him…) But to see my tough rugged man holding his sweet little girl’s hand, and seeing the love and pride in his eyes when he looks down at me, there is no better feeling in this whole world.

Annie’s team loaded her up and prepared to wheel her out and head to the OB-ICU room. I could tell how badly Robert wanted to be in two places at once. I was so happy and at peace that my girl was here, I saw her and she was ok, so I insisted he go with her. Dr. Smith said he would be finished with my surgery in 15 minutes or so, and I said I would be fine and could be alone. No sooner had Robert left then I saw another pair of smiling eyes hovering over my head. Jenny had come in to be with me (even though I said I would be ok, I’m so glad she came in. Big sisters are almost as comforting as husbands). I remember telling her how beautiful Annie was, and how perfect she looked. When they were finished, they put me back on my hospital bed and wheeled me back into the room with Annie. From that moment on, I don’t remember the exact order everything went in, and I don’t know for sure what time everything happened. Time didn’t exist for me in that room, and I still praise God for that.

Soon after I returned to the room I watched Annie’s team re-weigh her. She weighed 4 lbs 11 oz. I felt my heart sink a bit because I knew she couldn’t donate her kidneys to a recipient unless she was 5 lbs. Believe me, I had eaten every pie I could get my chubby little hands on in order to fatten her up, but she was still too light. Annie’s neonatologist, Dr. Nandyal, who had been working with us since we first met to discuss organ donation had insisted on re-weighing her because he knew how important this was to us. In discussions with him before and since her birth, we have talked about how anencephaly should be an exception to the 5 lb rule, simply because of how much of a newborn baby’s weight is in their heads. Annie was missing a large portion of her skull, and the rest of her body was no doubt in proportion to an average newborn. Even though her kidneys were not able to be donated, they could still take her liver and heart valves. Her oxygen levels needed to be above 80% to keep her liver viable, so she was put on a high flow nasal cannula to supply her with enough oxygen. I’m so thankful for all of the time and effort Dr. Nandyal put into Annie’s care. He decided to try the high flow nasal cannula prior to intubating her so we would be able to hold her and to keep her as comfortable as possible. I also can’t tell you how touching it is that in the several weeks we worked with him, this man insisted on calling our baby by her name. He rarely (if ever) called her “the baby” or “the patient.” He always called her Annie, or “Baby Annie.” To us it felt that he was invested not only in her health care but also in her life experience and our experience with her.

The nurses tried to put the hat I had made for Annie on her head, but because of the oxygen tubing they were going to have to cut a hole in the top of it. They opted to use the hospital hats instead. Once all of Annie’s tubing was secured they bundled her up and brought her to me. In that moment, I felt like my heart was going to burst. I felt no pain, no sadness, no grief, only pure joy. I reached out and took my baby and I hugged her close. I experienced a peace and comfort then that I hadn’t felt in 5 long months. She was here. I could smell her, kiss her, and hold her strong little hand. I held Annie, Robert held me, and God held us all. I remember all of the time I spent worrying that I wouldn’t want to share Annie. I almost laugh now when I think about that, because I wanted everyone to come meet her as soon as they could. Our room wasn’t big enough for everyone at once, so we brought people back in shifts. The first people we wanted to come back were our girls. I was a little nervous for them to meet Annie, because although she was the most beautiful thing in the world to me, she didn’t look like the typical newborn. I had previously discussed with Dylan on a few separate occasions how God makes us all different. I told her about how Annie was going to look a little different, her eyes may be a little big, her ears might stick out, but because God made her she was going to be beautiful. We talked about how it doesn’t matter what people look like on the outside, we love people for who they are. I thought these were all great discussions, but Dylan is 4. You never know how much sinks in and she changes the subject immediately after you’re done talking so you aren’t really sure if she was listening in the first place… I was also nervous about forcing the girls to have an immediate attachment to a new baby. I remember when Jenny had her second son Cole, her oldest son Luke sat as far away from him as possible the entire first day refusing to look at him. Now they are best friends and you can’t hardly separate them, but I knew we didn’t have that kind of time. If Harper wasn’t interested, I didn’t want to force her to be, but I knew this was probably her only chance.

I was told they were there and ready to come back. Dylan had seen the birthday cake she ordered for her baby sister. My sisters said she shouted “it’s exactly what I wanted!!!” I heard them come barreling down the hall and I took a deep breath. Here goes nothing… Robert came into the room with both girls and they both had the biggest smiles on their faces. They were so excited to meet their baby. Dylan came right up in bed with me, looked at Annie then back at me, and with the most genuine admiration said “Mom, she is so beautiful.” You can see in the pictures that nothing about that meeting was forced. Dylan was so gentle and loving to her sister. Harper on the other hand was throwing a pretty stubborn fit. Annie was in my right arm and Dylan was in my left arm and my gut had just been cut open so there wasn’t anywhere for her to sit. I told Rob just to get her out of the room until she calmed down and we’d try again. This ended up being the perfect solution because Harper left and got some lovin and attention from grandparents while we spent some quiet time with our oldest and our youngest. At one point Dylan looked up at me with worried eyes and said that she wanted to kiss Annie but didn’t know where she should. Annie was snuggled down in her blankets and her oxygen tubing covered a great deal of her cheek, so I rearranged her a bit so her biggest sister could love on her. The pictures Sarah got of that meeting I will cherish as long as I live. Eyes don’t lie, and Dylan’s eyes were gleaming with love and adoration. I will never forget the moment when Dylan exclaimed, “wait! Let me go get my book!” and ran out of the room. She returned a few moments later with her kids version of Heaven is for Real. She climbed back up on the bed and asked me to read it to Annie so she would know how great heaven was going to be and she wouldn’t be scared to go there. I honestly don’t know how I read the whole book without crying, because that was the most loving thing Dylan could do for her sister. She even got on to me once or twice for not showing Annie the pictures the right way. In her nighttime prayers since Annie’s birthday, Dylan often asks Jesus to give her sister a big hug for her and to please let her ride his rainbow horse.

Harper finally decided that she was ready to come back in, and it was her turn to have one on one time with her baby sister. This meeting is the one that broke my heart. I hadn’t really prepared her for Annie’s appearance, because I wasn’t sure how much of that she would really understand. It turns out that it wasn’t necessary at all. Harper Lou was born to be a big sister. She squealed “Baby Annie!” while caressing her face and hands (and occasionally poking her in the eye), and she kissed her over and over. The love that she gave her baby sister that day was unbelievable. Harper is rambunctious, stubborn, and wild, but when it came to Baby Annie, that girl was so loving and gentle, and I hate that she only got to love on her baby for such a short time. Again, Sarah captured those few moments and I’ll always get to remember and see Harper’s beautiful face looking at her baby.

Robert and I had bought both of the big girls tiny silver crosses to wear around their necks so they can be reminded in the years to come of Annie. They loved their tiny precious gift from their tiny precious sister. I was told by family that when they got back to the waiting room Dylan shouted “I got to meet Annie and she’s beautiful!!!” I couldn’t have asked for a better meeting. We didn’t have to force anything, and they each loved Annie in their own special way.

The next group we called back was the grandparents. I was so ready to show off my baby girl, but I wasn’t really ready to let her go and let other people hold her. Each grandparent got to come over to us and touch and admire their precious granddaughter in my arms. There was so much love surrounding Annie. I was amazed at how few tears there were, and the tears I did see were tears of joy. I think we all just felt so incredibly blessed to meet her and to know her. Next came the siblings. One of my favorite pictures of the entire day is of three of Annie’s aunts bending over the bed to see her. I posted the photo on Instagram and our friend Kyle commented “Annie’s light cannot be hidden. It’s shining on all of your faces.” He was exactly right. Annie brought something special out in all of us, and she changed us all. I could feel it. Her light was shining in all of our faces all day. After the siblings came back, then everyone else who was there came back. Annie got to meet every single member of the family that was there.

I’m told that babies with anencephaly are likely to be blind and deaf. I will never know for sure if Annie could hear my voice or see my face, but I know what I felt that day. I could feel her looking at all of us. I feel like whether or not she could actually “see” us, we spent that day engaged with one another. In the pictures you can see that her eyes are focused. All in all, it was the most incredible, beautiful, joyous day, because Annie was there and so was the Lord.

After all of the necessary blood test results came back for organ donation, we decided to remove the oxygen. Robert and I were alone in the room with her and now that she was free from wires and tubes we had turned her around to face us. We sat on the bed together and admired our little girl as she lay in my lap. We tried to soak in every bit of her. Now that her cheeks were free of tubes and tape, I kissed them a thousand times. Robert held her hands and kept telling me what an amazing grip she had. Annie had a portable O2 monitor on her little hand, and it had been reading in the 90’s all day. Soon after her oxygen was off, that number started dropping. It hovered between the 80’s and 60’s for awhile. Her little pink hands slowly began to lose their color and turn a deep purple. It was during that time that we saw our baby start to fight. She was fighting for every breath. You could see in her face how hard she was trying. We sent a text to our family out in the family room and told them to start praying. I’ve never prayed so fervently in my entire life. I don’t even remember trying to say anything, the words were just pouring out. I remember saying “please God, please, don’t let her be hurting. Annie, it’s ok. Go home, Annie. We love you so much. I love you baby. Please God, please…” I don’t know how long we sat there praying over her, but after awhile, her breathing became less labored. Her sats stayed in the 60’s, but she adjusted. She wasn’t ready to go. I remember praising God for the extra time. I had felt so desperate because even though I was telling her it was ok to go, I was lying. I wasn’t ready for her to leave me yet. I needed just a little more time.

After we were sure she was stable, we started bringing family back again. This time I WANTED to share her. I wanted everyone to get a chance to hold Annie and feel her warmth. We started again with the grandparents and that was an amazing sight to see. Each of them love her so deeply, and I’m incredibly thankful that they were all patient enough with me to wait until I was ready to share. I remember my father-in-law Mike declined to hold her at first, and I could see in his face that he just didn’t want to take that time away from me. I looked at him right in the eye and said, “so you’re telling me you don’t want to hold my baby?!” He laughed and then he knew I was ok to share. Annie was passed around from one loving family member to another while I watched smiling with pride from my bed. Every single person got a chance to hold her and love her closely. What I saw on every person’s face as they held her was so beautiful.

The day continued on, and the time came and went for Annie’s liver to be viable. Her oxygen levels stayed too low for too long for it to be able to be donated. My heart sank again, but this meant that after she did leave us there was no rush to get her down to the operating room. They were still planning on taking her heart valves for recipients, and those didn’t have a time limit on them. Our Life Share nurse, Shellie, who had been with us since our prayer service at 5:00 a.m. finally decided to go home I think around 9 p.m. (?) Nothing had really changed with Annie’s condition in several hours, and if anything were to happen they would call and let her know. Shellie was so incredible to Annie and to our whole family.  She was there the entire day as a resource for Annie’s nurses, and she was ready for if and when Annie passed to be in on the organ procurement. She had to have been exhausted, but I could tell she really wanted to be there with us. Our family decided to give us some quiet time, so Robert and I snuggled up with our baby girl. I remember that being an incredibly peaceful time.

There was one point in the day that I saw Robert struggle. He is such a fierce protector that when he saw our daughter getting tired, he began to question. He wondered why God wouldn’t just take her home. I could see his frustration, but I know that it wasn’t with God. Robert hates it when any of us are sick or hurting. His main love language is service, so if there is nothing he can physically do to help us it is extremely hard for him. Later he told me he realized that we were given that precious time in order to share her and let everyone hold her and know her. I was really glad (and this is going to sound silly) that he got to change her diaper a few times. That was something he got to physically do for her. He also got to hold her hand and be with her when they got her oxygen situated, while they gave her both of her tube feedings, and when they started her IV. Robert loves all of us girls so intensely, and with a love that deep comes immense feelings of helplessness when there is nothing you can do but wait…

All throughout the day I had been battling bouts of nausea and vomiting from the medication they gave me during surgery. I was finally starting to feel a little better and our nurse brought me some chicken noodle soup to try and get something on my stomach. It was around 11:00 p.m., Robert was sitting back in bed holding Annie and I was sitting up taking sips of soup. All of a sudden I heard Annie gasp. I turned and looked at her and she gasped again. I grabbed her out of Robert’s arms, I looked into her eyes and I knew. We pressed the call button and the nurse came in. I remember saying “I think it’s happening.” She asked if we wanted her to go get our family and we told her yes. Robert and I prayed again over our daughter, but this time it was far less desperate. Annie had fought to be with us all day, and she was tired. God had let us spend far more time with her than I ever dreamed we would get, and we were grateful. It had been the perfect day, and this time I was really ok if she went home. Our family came quietly into the room and stood around us. I only looked up from Annie’s face a few times, but when I did all I saw was love. I thanked Annie for changing me. I thanked God for giving her to me. I told her I loved her as many times as I could. And then I saw her leave.

Annie left us at 11:34 p.m. the same day that she came to us. We got to spend the most amazing and love filled 14 hours and 58 minutes with our daughter and our family, and none of us will ever be the same. After the doctor pronounced her death, our family all prayed over her and asked God to welcome her home. Then they all hugged us and left us alone with Annie. We had over an hour with her while they were setting up down in the OR for her organ procurement. During that time I unwrapped her from her blankets and admired every inch of her. I laid back and put her on my chest and stroked the soft skin on her back. I held her and Robert held me. There was so much peace in that time that can only be explained by a divine presence. God was there. He had answered every single prayer. He gave us strength, stamina, joy, time, his presence, and he healed my baby and took her home. I couldn’t do anything but praise him.

When they were ready in the OR, Shellie came in our room and asked us if we were ready to take her down. She had barely been home a few hours and came back up to the hospital to be there for Annie. We gave her Annie’s dress, hat, and booties so they could get her dressed after she was done. I got into a wheelchair and Robert handed me our sweet little girl. The whole way downstairs I had my face pressed against Annie’s. If I kissed her soft cheek a million times it still wouldn’t have been enough. When we got to the OR we said goodbye to Annie, handed her to Shellie, and watched as she disappeared through the doors. They were able to successfully procure her heart valves for recipients, and they also took several of her other organs for research purposes.

When we got back up to our room I was ready for my emotional dam to break. Several times Robert and I had talked about the story in the bible when David’s son was sick. How he pleaded with God, wept and fasted for 7 days and wouldn’t listen to anyone. Then after his son died he got up, washed, worshipped God and ate.  “But now that he is dead, why should I go on fasting? Can I bring him back again? I will go to him, but he will not return to me.” (2 Samuel 12:23) I have read books, blogs, stories on anencephaly websites, everything I could get my hands on to prepare myself for the time after my baby died. In every single account I read, after the baby died the parents had lain in bed together, held each other, and wept.

I have never been more surprised in my life than I was in the hours and days after Annie left us. We got back up to the room and all of my nausea was gone. I was starving. I am convinced that not only did the medication make me nauseous, but the anxiety of the unknown did as well. After Annie passed I knew where she was. I knew she had been healed. There was nothing to worry about anymore. Robert re-heated my soup and I ate it all. I felt like David.

Soon after I ate our new room was ready. We had been in the OB-ICU room so we could stay with Annie, but there was no reason for us to be in there anymore. We gathered our things and went down the hall to a regular room with a couch bed for Robert and an actual bathroom and shower. In this room we laid in the bed together and held each other, but we didn’t weep. We slept. Hard. We slept for about 3 hours when the phone rang. Annie was done with her surgery and they were bringing her back up to see us. When Shellie brought her back in, she looked beautiful. She had her little white dress on, and the ruffles looked just like angel wings. She had her booties on that I had knitted so carefully for her, and they fit her tiny little feet perfectly. She was wrapped in her soft blanket. There were a few things that were different however. Her sweet smell was gone. She smelled of antiseptic. Her warmth was also gone. She was cold. I kept trying to bundle her up, but I knew it wouldn’t help. She was still so soft, though. I stroked her and kissed her still soft cheek. She had a bandage from the very top of her chest all the way down to her diaper. I was incredibly proud of my little girl and her big bandage. She was the first baby in Oklahoma to have a bandage like that. Annie was the very first newborn organ donor in this state, and I can’t imagine the doors that have been opened because of her.

Robert asked me if I wanted him to go get our sisters and brothers. I told him that they weren’t here, they had all gone home after Annie passed away. He told me I was wrong, that everyone had stayed… I couldn’t believe it, but then again I really don’t know why I was surprised. They wouldn’t have left even if we told them to. They were there for us, sleeping on the cold floor in the family room, ready for any and everything we may need. They came in and held Annie, we visited and retold stories of the previous day, and hugged each other.

The entire day after Annie’s birthday, I was at peace. Robert and I both noticed that it must have appeared to some of the staff that we were in denial about what had happened. We weren’t crying, we were smiling and laughing. A few people assured us that the pain and sadness would indeed come, and we should be ready. Well, we weren’t in denial. We knew that the emotional rollercoaster was far from over, but we also knew exactly what had happened and where our daughter was. We had the peace that surpassed all understanding, and I saw it. I saw that people didn’t understand it, and it was awesome. In that day, all I could think about was how much we had been given, and how perfectly Annie’s birthday had gone. It was everything we could have hoped for, so we took some time to rejoice.

The nurses came in to get Annie and take her for some arts and crafts time. They made little molds of her hands that are so perfect you can see every detail. They made molds of her precious little feet. They made Christmas ornaments with her handprints and footprints. They filled a scrapbook with her hand and footprints and a lock of her hair. They gave her and each of her sisters a matching teddy bear, which Dylan and Harper have named the “sister bears.” They made a stepping stone for the garden with imprints of her feet and her name. These women went above and beyond any expectation we had, and I found out from my cousin they had come in to do all of this on their day off (they are apparently the best mold makers). The Life Share team gave Annie a beautiful pink and white quilt with the Life Share logo embroidered onto the face. We received so many touching gifts from the amazing staff that we felt they loved Annie like she was one of their own.

The next evening it was time to be discharged. We had finally gotten my physical pain under control with oral medication, and I was ready to go home. Robert carried all of our stuff downstairs and loaded up the car, and when he got back we asked to see Annie once more before we left. Robert had given the chaplain the funeral home’s information, and they were going to come pick her up, but in the meantime she was in a special room down the hall from us. I feel like this was my only regret. When our nurse brought her to us, she looked so beautiful. She looked exactly the same as she had the last time I saw her. She was bundled up in several blankets, so I didn’t realize how cold she really was. I reached down to stroke her soft cheek and it was hard. My little girl’s body was freezing. That’s when it hit me that I was holding on to something that wasn’t there. I have had to try several times since then to rid that touch from my memory and remember only rubbing and kissing her soft, warm cheeks. I spent a few minutes just gazing at her perfect little face. Her nose and mouth that looked just like her big sister Harper. Her eyes that were a deep navy blue. Her precious little hands. And then I said goodbye.