Kittymomma's Adventures

Yesterday was my first day at home alone with Max since Lucy died. I dreaded it for the last few weeks, but it actually went quite well.

I missed her so much at lunch. Lunch with my two kids had become a special part of my day in the last few months. Lucy was older and on a different schedule, so we were all able to eat together sometimes.

 I felt Lucy’s absence acutely as Max and I walked into HEB, followed by a wave of sadness when I saw the shopping carts. I remembered how they rode in a racecar cart together for the first time on what would be our last trip to the store together.

I saw a mom with a new baby and looked after her wistfully.

As we walked through the aisles, I started to think how I just didn’t want to be there without her. My limbs began to feel weak and fuzzy, like they do every time the reality of the situation crashes over me. The first time I noticed that feeling was when we had the endless interviews with the transplant team in Dallas at the very same time we were reeling from being told she could have a severe attack of ventricular tachycardia and die at any moment. My limbs kept trying to disappear on me. I kept feeling like I needed to lie down. But I forced myself to stay upright and smile and look like a mom fully capable of handling a child with a heart transplant. It was the most important audition of my life. I had to be a good heart mom and save my daughter’s life.

That feeling tried to overtake me again at HEB. But I forced myself upright again. I talked to Max. I looked at my list. Suddenly, I realized I was buying school supplies for my son for the first time.

My kid actually needs school supplies! I have a kid big enough to need school supplies! How did I not see this first coming? Usually, I would be geeking out looking forward to something like this.

I proudly found the Elmer’s glue and reminded Max what it was for. I marveled at the joy and hope that still remains in my life.

The day of my daughter’s funeral started so normally. It was a lovely, sunny day. I wore a new outfit. I was pleased with what I had planned. But instead of the excitement I usually feel before an event I have planned, I felt a dull dread.

We drove to the funeral home. All of a sudden, I was very anxious to get inside and be with Lucy. I was afraid the funeral home would mistakenly let people in before us and we wouldn’t get our alone time with her. I snapped at my husband for running back to the car for something.

Chris, Max, and I made our way inside and there was the little, red casket we chose for her. I could see the ladybug panel we had chosen. It was perfect.

She looked beautiful. I’m so glad we chose not to embalm or cremate. She looked as much like herself as was possible.

She wore the beautiful Janie and Jack outfit from the bluebonnet pictures. Moonie, her nightlight and one of her favorite toys, was at the bottom of the casket. I moved him up and placed him in her hand, turning him on. I wonder how long he kept glowing.

She clutched mismatched socks in the other hand, one yellow, one purple. She always pulled her socks off and we didn’t want to cover her precious feet. Plus, no one in our family ever has matching socks.

There was a family photo from our Christmas session and a carefully hidden piece of train track. We knew Max wouldn’t miss it and thought he might like to know it was with her one day. There was actually a funny moment when we were trying to find out if the track was indeed in there without letting on to Max that we had taken it. I kept spelling “track” to Rebecca, the woman we worked with at the funeral home. She had no clue what I was talking about, because she thought it was a puzzle piece. I kept spelling “track” while she looked at me confusedly until Chris finally said “train” and it clicked. It was just so absurd standing next to my daughter’s casket spelling the word “track” over and over again.

 We had told Max he could pick something to send with Lucy, but several days went by without him choosing anything. Then, the morning of the service, he spotted Lucy’s heart-shaped sunglasses when I was standing at the foyer table doing my makeup. He said Lucy should have them. So, he placed them in the casket after we got there.

There was also a stone that said “Love” that I gave to Chris for his birthday right after we became a couple, as well as a seashell that said, “Believe in Miracles.” My friend Jill gave that to me during Lucy’s last hospitalization and I carried it in my pocket every day. It sustained me through some very hard times. It seemed fitting to send it with Lucy. I’m not sure why.

Max kept asking why he couldn’t play with her. He was fascinated with the Kleenex boxes attached to the back of the pews. He had a clicking tongue conversation with his little cousin Leighton.

I asked for a moment alone before they closed the casket. That was easier said than done, since Max was sticking to us like glue. There was too much to say and feel in that moment anyway, especially with a three-year-old howling in the background. I was glad I had held her and talked to her so long a few days before. I backed away and watched them close the casket.

It moved me more than I expected to see my stepdad, father-in-law, and brothers carrying Lucy’s casket. It meant so much to me that she was in their hands. I can’t believe we weren’t even going to choose pallbearers originally.

The service was everything I hoped it would be. Many friends and family came. Some wore black, some wore colors. The weather was beautiful. Chris and I managed to make it through our reading of “Little Owl’s Night” and Max unexpectedly chimed in on the last line, “He was fast asleep.” It was the perfect ending. We couldn’t have rehearsed it any better.

The celebrant read a poem shared by my niece Madi “Do Not Stand At My Grave and Weep” as well as a prayer shared by my friend Jill.

Some of my new friends from the SoCo Women’s Chorus, a choir I just joined, sang Lucy’s favorite song “Let Me Call You Sweetheart”. Then, my dear friend Mary sang “Long Time Sun” through once, so the rest of us could join in on the second round. That song is very special to me. I sang it to both of my kids when they were born and I wanted it to send Lucy on the next phase of her journey.

After the service was concluded, red heart-shaped balloons were distributed. Lucy was born three days before Valentine’s Day and her first birthday party was Valentine-themed. Also, my mother-in-law’s mother’s maiden name was Valentine. Chris and I had our first date on Valentine’s Day 2006 and were married two years and two days later. Our wedding was a bit Valentine-themed, too. The red heart, along with the ladybug, is Lucy’s symbol. I hope that those hearts will also come to symbolize other children with the same heart condition, who will have better options and better quality of life thanks to the donations made in Lucy’s memory. Thank you so much to everyone who has donated so far.

It was quite windy, perfect for a balloon release. I had to work to hold on to mine. It seemed like Lucy was tugging on it saying, “Gimme, gimme!”

 I said, “Ok, everyone, let’s send our love to Lucy.”

The balloons sailed into the sky. It was even more beautiful than I imagined.

Max started to melt down as we were trying to hug and thank people after the service. I noticed that the choir members were all wearing tiny ladybug pins and that my friends were wearing ladybug ribbons. I was so touched to see that.

I was so relieved that it went well and it was done. I am proud I managed to plan a fitting service and write the eulogy (with a little help from Chris). I am so grateful to everyone who helped.

That is how I said good-bye to my daughter.

If I had to pick one word to sum up this whole experience so far it would be “bizarre.”

That’s probably not what you were expecting. Well, me neither.

Ever since Lucy was first diagnosed last November, we have had to face the prospect of her dying. But it seemed very remote in the beginning. Years away. In fact, they thought she would recover completely at first.

I remember being SO ANGRY at God after we first found out. I remember locking myself in the bathroom in the PICU at Dell Children’s and saying terrible things in a furious whisper to God. I remembered a line from “Reba”, one of my favorite TV shows, “God’s a big boy, Reba. He can take it.” But I felt like I’d really taken it too far later and was ashamed and embarrassed. Especially since, at that point, we were just looking at a chronic condition to manage her whole life. I can’t believe now that I was so angry at the prospect of her having to take medicines and see doctors her whole life. I would be so grateful now to still have that option. 

I went through so much anger and sadness those first few months. I could not tolerate the thought of Lucy dying or even being at risk of transplant. I didn’t want any of this. I refused to accept it. But when her condition worsened and we had the big vtach scare in February/March, I was forced to accept the intolerable. Transplant, anything, if I could just keep my daughter. Looking back now, I guess that was bargaining. 

Like any parent, I’ve experienced terrible fear of anything happening to my children. In my imaginings, the pain was unbearable. Then, the worst happened. My child died. I found her in her crib. I felt the chill of her skin and the lack of breath and snatched her up and saw the worst. I clutched her to my chest and ran downstairs screaming for my husband, knowing the worst. We both attempted CPR and watched paramedics work futilely. We knew it was futile. I tried to pray she would breathe. But I knew it was no use. 

It was all horrible. The worst thing that has ever happened to me. I still can’t quite believe it happened. Excuse my language, but how the fuck did this happen? How did my child die? Did this really happen to me??

The reason I say it was bizarre, besides the obvious, is that it doesn’t seem that different from other losses I have experienced. This one is more present. It stares me in the face everyday. It is such a shock to have a baby to care for all day, every day and just have it all stop. No more diapers to change or bottles to give. My arms feel empty. It feels strange to carry a purse instead of a diaper bag. I don’t know what to do with all this time.

 There is the inevitable guilt we parents torture ourselves with even in the best of times, not to mention a time like this. But I am still standing. I am still going. I don’t know how I am doing that. I even feel guilty I am doing that. But I am afraid not to.  

I know what it’s like to stop. I know what it’s like to let yourself fall into a pit and stop caring. And I refuse to do that again. That would not be fair to me, my husband, or my son. Or the rest of the people who love and need me. And it’s not what Lucy would want.

I feel like I went through stages of grief mourning the life Lucy would have had before she even died. I went through anger and sadness and bargaining and acceptance already. So, even though this was unexpected, we were somewhat prepared for it.  

But I worry that I’m not letting myself mourn properly. I don’t want to bury my feelings and have them come back and bite me in the ass. I’m doing my best to mourn and go on at the same time.

I am going to talk to someone. Don’t worry about that. The whole family probably will. But for now, I have to accept that the world is still spinning and I am still standing. I have to accept that I’m laughing while I’m also missing my daughter and scared out of my mind about what the future holds. I have to embrace the fear and embrace the future. I’m not naive enough to think we are insulated from further misfortune now. But I am doing my best to have hope.

NOTE: I wrote all of the eulogy, except for the part about what Lucy taught her Daddy. He wrote that.

We can’t believe we had Lucy and we lost her. She was everything we dreamed of in a daughter. Beautiful, smart, strong, feisty, and sweet. She let you know what she wanted. First, with a loud, shrill scream, later with her favorite word “no”. She had about seven different “nos”, all with different inflections to express her level of outrage and distress at the time.

We loved the name Lucy Blythe for so many reasons. “Blythe” was an homage to Sara’s favorite book “Anne of Green Gables”. But most of all, “Lucy” means “light” and “Blythe” means “happy and carefree”. We wanted her to be free of the anxiety and second-guessing that had plagued us for much of our lives. And I think she did spend her life free of anxiety. She often felt sick and tired, but she, like all young children, lived in the moment. Except for when unpleasant medical procedures were being performed or she felt especially sick, Lucy was happy. She did not hold grudges (much). She did not worry about the future. As long as she was with her family, she was happy.

She was the light of our lives and so many others. She was always observant and solemn, which made her smiles and laughs that much more special. You felt like she really looked at and listened to you. She saw into everyone’s hearts and accepted what she found there.

She brought happiness into the PICU at Dell Children’s Medical Center. Children there are often very sick and unresponsive. Lucy was very sick, but you couldn’t tell by looking at her a lot of the time. People would come by because they had heard about the cute baby in that room. They would smile and wave and she would usually smile back. We were so happy she could brighten the day of people who love children so much that they are willing to withstand the pain of being with them and their parents in their darkest hours.

She taught her brother his first lessons of love and sacrifice. He loved to suck his thumb and hold her ear, to have her next to him at bedtime, to smoosh her face. She taught him generosity by letting him do all of those things and respect for others by squawking when she wanted him to stop. She is now teaching him about loss and moving forward.

She taught her mama to once and for all stop doubting herself. That she is strong. That she needs to stop torturing herself with fear. That she can do and survive anything. That she doesn’t have to be perfect to be loved.

She taught her daddy that chaos is best faced with resolve, patience, and forgiveness. To take comfort in the strength of a loving community. To sacrifice anything that isn’t important. To love without hesitation and have faith in family.

Lucy seemed to be on the path to being the child we wouldn’t be able to turn our backs on for fear we’d find her on top of a tree or in the middle of the kitchen table. I don’t know why she was turned from that path. But she did her best to experience and enjoy life, despite the pain and obstacles and extra work that were thrown in her way. She loved our cats. She was starting to dance. She loved Elmo and stacking toys. We were all just starting to know her and find out what she loved. We wish we knew more, but will hang on to what we have.

In honor of her, do something you love every day. When pain is over, let it be over. Do your best to love hard and live in the now, so you can let go and be satisfied when the time comes. We believe she was satisfied and ready to go. Her body was no match for her spirit. She needed to be free.

Our baby girl was so loved and made such a huge impact. She lived a full life. She did her work. As Sara’s aunt Martha said on the phone a few days ago, “She was your greatest teacher”. We are so proud of our little girl. Well done, lady baby. We love you. Good-bye.  

Amazingly enough, there have been only a couple of nights that I really couldn’t sleep since Lucy died. There was the first night, obviously. But then, a few nights later, I found myself terrified of the very thing I wanted most – being close to my daughter.

I had been sleeping with an article of Lucy’s clothing every night, but it really wasn’t comforting after the first night. I kept it up, because I thought I should. Also, I hoped the comfort would come back. But it didn’t. And that last night, I think it actually made things worse.

The memory is a little fuzzy now, but I think I dreamed about Lucy. I heard once that if you dream about someone who is dead, that is actually them communicating with you in the dream. At first, that thought was comforting. But I took it too far.

I am honestly not sure what I believe anymore. I was uncertain before I lost Lucy. I believe in God and heaven, but that belief has been shaky for awhile. It actually got stronger when she had that amazing turnaround in the hospital in Dallas. I am actually surprised that I am not angry with Him now. That might come, but for now, I am just asking Him for help.

I also don’t really believe in ghosts, but that doesn’t stop me from being scared of them. So, basically, I tried very hard to welcome Lucy if she was trying to communicate with me. I wanted to be open to that if it was possible. It’s my baby daughter, how bad can it be? But it was still too scary. It was the middle of the night, I was only half awake, and I became convinced I could feel Lucy next to the bed and I was terrified.

That happened to me after my grandmother died, too. I kept thinking I saw her standing next to my bed, gazing down at me reproachfully. I’m not sure why, since I loved my grandmother very much and had a great relationship with her. I guess it’s because I didn’t like the way I acted during what turned out to be the last time I saw her. I acted like the thirteen-year-old I was. Not rude or anything, but not terribly loving.

I just couldn’t calm down and go to sleep. Chris eventually got me to relinquish the sleeper I was clutching and calm down and go to sleep. There have been no repeat incidents. I did have another dream in which Lucy appeared, but it did not wake me up. I was just happy the next day to have dreamed of her.

I just don’t know what to think about this sort of thing. I have had several uncomfortable supernatural experiences concerning Lucy. The night before she was diagnosed with dilated cardiomyopathy, I felt inexplicably worried about her. I was standing outside of her room holding her and I happened to glance over my shoulder. I thought I saw a dark figure in her room. It was probably an optical illusion of some sort, since the room was dark, but it seemed uncomfortably like the Grim Reaper after she was diagnosed.

The night before she died, I dreamed she was dying and there was nothing we could do about it. The dream made me feel so terribly sad, but she seemed normal the next day and I shook it off. You could call all of these things mother’s intuition, but I don’t know what to think. Are there such things as ghosts? Spirits? Intuition? Psychic phenomena?

I don’t think I really want to know. Most of these things could probably be attributed to the close bond I shared with my daughter. Perhaps that bond can transcend death. I hope so. I guess anything that bolsters my hope that I will see her again is a good thing.

What kinds of experiences have you had after you lost a loved one? Looking back, were there any strange signs before they died?

It is very hard for me to cry in front of anyone but my husband. I tend to hide my emotions and try to be strong. I hide away when I’m hurt.  I break down in private or have small moments here and there.

The moments and the emotions hit me at the weirdest times. I went to Barnes and Noble with my brother and sister-in-law last Thursday to pick up a present for Max. I had been at Barnes and Noble with Max and Lucy exactly a week before, on my birthday. I knew it would be hard, but I wanted to go. Got to rip off the Band-Aid some time.

We went to the train table. I did fine picking out the gifts, but wanted to move away after that. That’s where my little train fanatic always wants to go at B&N. Too many memories.

We all kind of wandered away from each other and I walked around looking at the books while I had a chance. I have always loved to look at all the wonderful books there are to read. I love the look and smell of them. In fact, that same Barnes and Noble was one of the first places I went after I found out I was pregnant with Max. I wanted the baby to feel the wonderful way I feel when I’m around books. I even told him that.

But my body just felt heavier and heavier as I walked around. I finally sat down in the mystery section. I closed my eyes, but then I just looked at the books towering over me and felt a bit comforted. I was surrounded by old friends, dream worlds I could visit to escape the pain.

Suddenly, I looked to the left, towards the bathroom and thought, “Changing table. I have to go to the changing table.”

So, I got up, walked over there, and walked in. The first person I encountered was my sister-in-law drying her hands. We smiled and then I saw that the stall with the changing table was taken. Sort of. There was a backpack hanging on the hook. The owner was standing at the mirror doing her makeup. I went into a regular stall to try to wait, but she was still there when I came out.

Seriously, lady?? You’re going to hog the stall when you’re not even using it??? I need to commune with my daughter at one of the most disgusting changing tables ever!

I politely asked if she minded if I used the stall and she graciously moved her bag. I went in, locked the door, pulled the table down from the wall, and let the tears well up. The stinky changing table made me cry.

I had so many moments with my two kids in that stall. We went to Barnes and Noble to play with the train table all the time. It was an easy activity for a mom with a toddler and a newborn. I changed some really disgusting diapers in there. Max embarrassed and amused me in there. (I probably shouldn’t say how. He might not want that on the Internet someday.) I felt heroic and utterly defeated at the same time after wrangling the two of them in there. Plus, I just knew she had been there. I could feel her there, as ridiculous and gross as that sounds. That changing table was one of the few places I really let myself feel my loss during that first crazy week. And it was such a relief.

I bit back the tears after a moment, as is my way. I didn’t want everyone in the store to know I had been crying.

It’s those moments. The frustrating, disgusting, mundane ones. I never knew those moments in that bathroom would come to mean so much to me. But they do. Or maybe I just thought they would be a source of laughter, not tears.

“Little Wonders” by Rob Thomas is one of my favorite songs. I still remember the moment I first heard it in the car. (Back when I still listened to the radio!) I considered it for the first dance at our wedding. It was on the playlist when I gave birth to Max. (Lucy came too fast to even think about music.) This week, it has provided so much comfort. Those small hours at the disgusting changing table provide comfort. They matter.  I want to share it with you now.

I will write a post about the service soon and probably share the eulogy on the blog. For right now, I will just say that it was everything I hoped it would be. I think we honored Lucy properly. I just feel love for her when I think about it. Today has been harder. I have felt a lot of sadness and anger. But, honestly, I am glad I am finally giving myself a chance to feel those things. It is a relief.

Let it go,

Let it roll right off your shoulder

Don’t you know the hardest part is over?

Let it in,

Let your clarity define you

In the end

We will only just remember how it feels

 
Our lives are made

In these small hours

These little wonders,

These twists and turns of fate

Time falls away

But these small hours

These small hours

Still remain

Let it slide,

Let your troubles fall behind you

Let it shine

Until you feel it all around you

And I don’t mind

If it’s me you need to turn to

We’ll get by,

It’s the heart that really matters in the end

Our lives are made

In these small hours

These little wonders,

These twists and turns of fate

Time falls away

But these small hours

These small hours

Still remain

All of my regret will wash away somehow

But I cannot forget the way I feel right now

In these small hours

These little wonders,

These twists and turns of fate

Yeah, these twists and turns of fate!
Time falls away,

Yeah, but these small hours

And these small hours still remain,

Yeah

Ooh, they still remain

These little wonders,

Oh, these twists and turns of fate
Time falls away

But these small hours,

These little wonders,

Still remain

Lyrics courtesy of http://www.metrolyrics.com/little-wonders-lyrics-rob-thomas.html.

Performed and written by Rob Thomas for the Walt Disney film “Meet the Robinsons”

The English major in me won’t let me print this without acknowledgment. Plus, it’s probably illegal to do so.

I had so many good times with the kids during what I now know were the last few weeks of Lucy’s life.

They played with a dollhouse together at Terra Toys on her last Monday.

They had a picnic together in the Super Yard after they both had accidents in the living room.

They crashed trains together on her last morning. Lucy gave one of her rare laughs the first time Max crashed Diesel 10 through the other trains.

And my sweet boy will not remember any of it. He will be doubly robbed, both of the sibling and playmate I so wanted him to have and the memories that sustain a connection after death.

That has been one of my biggest fears since Lucy became sick and now it is one of my biggest sorrows. Max will not remember his sister. We will tell him stories and he will see pictures. But he will not actually remember her. He loves her so much. He misses her so much right now and doesn’t understand what it means when we tell him she died. He was so happy to have a baby sister. He doesn’t understand why we let strangers carry her out the front door and not bring her back. I am hoping tomorrow will help him to understand or have some closure.

The fact is, he will understand in time, but he will forget her. And that breaks my heart. All of it breaks my heart.

Since Lucy died, several people have told me that this experience will “break me open”. I hope that’s true. I am not very good at letting people in. I build up walls and believe I have to put up a strong front.

So many people, including some I consider to be dear friends, have repeatedly told me they are here for me anytime. For a cup of coffee, to talk, anything. And I believe they really mean it. I would absolutely love to take all of them up on it. But I wonder if I will.

I am an introvert. I only became more so in college. I had some very dear friends in grad school. But then, they all moved away for one reason or another and I was left behind. I had a nervous breakdown before the second year of my Masters program. I recovered, but the experience and the meds I needed to dig myself out of it, left me rudderless. Ambitionless. All I wanted to do was rest. I let everything and everyone drift away. I was angry at the world and I sometimes didn’t even care enough to feel that emotion. I felt like I had probably ruined those friendships.

Then, I moved to Austin. I made more friends. Then, I got my heart broken and went into another depression. And pushed away/neglected those friends, too.

Now I have my mama friends. And some of those wonderful friends from my past have come back to me thanks to Facebook. In the past week, I have felt so much love. I want so badly to return it. I promised my daughter I would live more fully in her memory. But I am afraid I will fall into old, bad habits once we settle into a new normal. I want so much to let people in. Some days, I just plain don’t think about contacting anyone. I think that’s fairly normal for a mother of young children, but I have years of being a loner behind me to make it even more of an entrenched habit.

Please know I love you all. I promised my daughter I would be the person I am meant to be. I will do my damnedest to reach out. And, please, even if it seems like I am too busy or uninterested, please keep reaching out to me. I often assume people have enough friends or that I’m just not that remarkable. I’ve been reminded this week that others want friends and they really do love me for me. And others probably feel the same. We all seem so confident to each other. And we all need each other so desperately.

I am not going to retreat into myself this time. Thank goodness, I have Chris and Max and my cats right here in this house. But, please, all of you dear, lovely people, who love me and my family more than I realized or hoped – please keep reaching. I promise to reach back. I think you are remarkable. I am proud you are my friends. And I am always happy to have more.

Dear Lucy,

It’s been two days since you left us.

I thought about calling this my last letter to you, but it isn’t. I will never stop writing to you, just like I will never stop loving or missing or talking to you.

We planned your funeral today and picked everything out. You know how Mommy loves to plan, but even I was hard put to enjoy this one. But I hope you will like what we’ve planned for you.

I missed you so much last night. Nights are always the hardest. I wanted to hold you so bad. I just ached to feel your little body in my arms and to kiss your cheeks and your temple and your silky, soft hair. I ended up sleeping with the afghan Grandma made for me over me and one of your sleepers snuggled next to me, just like you used to snuggle next to me. It wasn’t enough, but it helped.

Today, I got my wish. I got to see you and hold you after we planned everything. I was apprehensive at first, but when I saw you lying there, I rushed to you. And you looked so beautiful. And I could not stop touching you and crying and talking to you. I held you as long as I could. And it was wonderful. I got my wish. I held you. I touched and kissed you like I always did and traced every feature. I did my best to memorize it all. I didn’t want to ever put you down, but I finally did.

Motherhood is such a physical thing, especially when children are little. You carry them in your body. You give birth to them. You nurse them. You feed and clean and dress them and carry them everywhere. They are constantly physically close to you. I am so accustomed to holding you. I need you in my arms.

I am so glad that I was the first and last person to hold you in this life. I wish I had been holding you when it happened. I hope they are right that you just went to sleep. I am so sorry you were alone. If you had to take your last breath while I was living, I wanted to be there for it.

I feel so guilty about not taking you to the doctor that last day. I actually dreamed about you dying the night before it happened and I was so sad and worried the next morning. But I thought it was just a dream. I thought my gut was screaming at me that you needed to see a doctor sooner, because of the dream. I really thought the next morning was soon enough for the doctor.  We talked to the transplant coordinator and Dr. Wright and they thought it was ok to wait. But it wasn’t.

It might not have made a difference if I had taken you to the ER that day, but I would have known I did everything I could. I go back and forth between thinking this was inevitable and it was better you weren’t in the hospital when you died and thinking you would be alive and farther up on the transplant list if I had just listened to my gut. Maybe this was your time and it’s good you had a fun weekend at home with your family going to birthday parties and museums instead of spending your last days hooked up to machines in a hospital.

I just wish you were still here. I wish I knew this wasn’t my fault. But the hospital might have just prolonged the inevitable and Daddy and I never wanted that for you. We never wanted you to live your life in the hospital. All through your last hospital stay, all we wanted was to have a chance to bring you home and give you a normal, happy life for as long as we could. And it seems like we ended up doing that. When I think about it that way, I don’t feel so bad. But if the hospital could have saved your life and gotten you to transplant and a longer life, I don’t know if I can forgive myself. And I might never know for sure. But I can’t be selfish.  What matters is that we had a beautiful last two months with you and you are free. We experienced normalcy and happiness. You are no longer struggling in a body that isn’t strong enough for you. You are no longer taking medicines everyday and being poked and prodded and examined.

In honor of you, my girl, I am going to live more fully. That is part of the reason I am writing today. I have always wanted to write and I have never given it a real chance. But I will now. I am making that promise to you now and hopefully that will be enough to finally make me keep it.  I have had the gift of 34 years and I will hopefully have many more. I want to make them count. I want to live for the both of us. I am going to be the best I can be. I am going to do the things I am meant to do.

Once again, you are teaching me and making me a better person. Honestly, I would rather be a shitty person and have you still here, but this is the road I am on. And I am going to embrace it and live every day grateful that I had you and grateful I am here.

I envisioned you last night in heaven with all of the great-grandparents you never got to meet. They were passing you around, so happy to be with you and you were giving them the biggest smile. I hope you are with them. I hope you feel happy and strong and can run and walk and never stop. I hope you never feel too tired and sick to smile and laugh. Be free and happy, baby girl. You deserve it. And I will do my best to do the same.

I love you so much. Please know how much I love you and that I tried so hard to do my best. I am sorry for all the times I let you down. You never, ever let me down. You were the perfect daughter of my dreams. Probably too perfect for this world.

I will talk to you again soon, lady baby. I will make you proud. I will learn and live the lessons you taught me. Thank you for being my baby.

All my love, Mama

Holding Lucy’s hand today.