A curly brown bear is an unacceptable replacement
for a blue-eyed baby boy.
A never-worn sleeper is unresponsive
to a mother’s touch.
A ball sits unthrown in a father’s hand,
unable to find his glove.

Pappaw’s knee unridden,
Mammaw’s cookies uneaten,
trips with the uncles untraveled.

Movies unseen, games unplayed,
toys silent in their unuse,
and a leash that lies
with a dog unwalked.

With so many dreams unrealized
and an ocean of wishes unfulfilled,
we sometimes find it all hard to understand.

But, with an avalanche of pictures,
an eternity of memories,
and a son unable to stop smiling from above.

Our one comfort is that,
a parent’s love is undeterred
and, a life so brief
burns so bright
with nary a moment unloved.

***************************
Travis and I have many random thoughts that we didn’t feel fit on any other page, so here are things we think people would want to know or should know:

**Travis read something interesting on the net recently that may help people understand the gravity of this: People who lose spouses are called widows/widowers. Children who lose their parents are called orphans. But there is nothing to call parents who lose their children. That’s how unbelievably excruciatingly unexplainable this is. There is literally no word for us, no way to describe our situation. Only other people who have gone through this truly understand.
****


**Although we know that Anakin’s TD should have been caught by ultrasound, we are not mad that it wasn’t. We don’t think we were supposed to know. Even two weeks before my due date, I asked the OB if he was sure that the baby was head down, so he decided to do an ultrasound. At first he just scanned really low and we saw the head/face, and then the OB went to scan the rest of the baby’s body and I quickly stopped him and reminded him that we didn’t want to know the sex. If I’d let him continue, he would’ve seen the problem.

Even if we had known, it wouldn’t have changed much, we never would have aborted and there was no way to cure Anakin. The only thing that would have been different is that we would have chosen not to put him on a ventilator at birth. After doing the research, we would’ve had to assume the worst, we couldn’t have known that Anakin would have done as well as he did on the vent for so long. And then, we would’ve missed 34 days with him and 3,000 pictures. We wouldn’t have known that he liked to kick his legs in the air when his diaper was pulled off, that he had ticklish feet, that he never fussed for no reason, we wouldn’t have had a chance to get to know our son.
****


**I chose to pump breastmilk for Anakin, but it wasn’t an easy decision. I had always planned to breastfeed, but when we were told so soon after his birth that he wouldn’t survive, I second-guessed that. I didn’t know if I could deal with stopping after we buried him. But, he wasn’t doing well with Pedialyte and that Friday morning (of the week he was born), I woke up and decided that if there was something that I could do for my son, I was going to. (I had no one to help me make that decision.) So, I started pumping. Immediately Anakin was started on breastmilk and soaked it right up. I had made the right decision. I did work with lactation consultants, once I felt like I had enough frozen, to stop pumping before we brought Anakin home. I didn’t want to lose time with him at home to pump.

If you are battling this decision with a terminal child, my advice is to remember that it is the one thing that YOU and ONLY YOU can do for your child. And, at a point when you’ll feel so helpless because only medical staff seem to be able to do for your child, you’ll need to remember that there’s something you can do. Although finding time to pump was often difficult (with the NICU schedule, eating, trying to get a nap, or doing insurance stuff), and, it ultimately didn’t save Anakin, I never regret a second of it. It was what I could do, and it did make his life a little easier.
****


**Be educated and involved in your child’s care. Although we had the most incredible NICU nurses ever, we made sure that we researched his medicines, his diagnosis, even his ventilator. We made sure that we understood everything that was going on with him. And remember, you are your child’s parent, his number one advocate. If you sit by his side for several hours a day, you learn his personality, his wants, his movements, and the nurses will learn to listen to you and look for the same things.
****


**Everyone keeps telling us that we’re brave, strong, and an inspiration, well, we don’t feel that way. We believe that it’s just what you do when you’re a parent, what’s best for your baby. And, make no mistake, we don’t feel strong. I have cried every day since my little Anakin was born. Sometimes the hurt is so bad that I feel like I can’t breathe. Each day I think that I must be out of tears, but I never am. I curl up with one of his blankets and cry for large pieces of the days. I’ve been told that will get better. But life will never be what we knew as normal. Our “normal” is changed.
****


**Although we really felt like we wanted to be selfish with Anakin’s time, we are glad we weren’t. Our parents had gone back home about a week after he was born, so it was just us. When we got the tests back and decided when we were going to bring him home, we called them and told them that they had until the 28th to see him (10 days). We also let friends and co-workers come. Anakin got to meet his only first cousin, all of his uncles, a couple of great-aunts, his godfather, and more. And, his grandparents got to spend more time with him. It’s really good to talk to those people now because they knew Anakin; they have their own memories of him. He isn’t just a picture to them and that’s comforting.
****


**How do you deal with Mother’s Day and Father’s Day? It’s really up to you, but I can tell you how we dealt. First and foremost, talk about it with each other. I actually got to spend Mother’s Day with Anakin, but Father’s Day was 16 days after Anakin died, 12 days after we buried him. I felt horrible that I got to be with Anakin on such a special day and Travis didn’t. Travis had been so excited throughout my pregnancy about Father’s Day. So, we “celebrated” the day. We bought two baseball gloves and baseballs and played catch. Travis had wanted to do that with his son, so we did it in memory of him. I got Travis a card too. We ARE parents. And, even though it’s difficult to feel like parents since our one and only son wasn’t with us for very long, we need to recognize that. I am a mother and Travis is a father. If we weren’t, we wouldn’t be hurting like this. We are reminded every second of what it feels like to be a parent, the pure joy and, in our case, the pure hell of it. I am now convinced that parenthood is the best feeling in the world with the possibility of giving you the worst feeling in the world.
****


**Understanding that we are not very far out from Anakin’s death, we still think that working together has been the most help. Even when we really feel that we want to shut out the entire world, we make allowances for each other. We try to be cognizant of what each one needs, if that’s time alone, then okay, but even in solitude the other isn’t far away, physically or emotionally. Friends and family all expected us to lean on them, but we didn’t. For the first time in my life, I didn’t turn to my parents. All I wanted was Travis. He was the only one who understood, who knew what I knew, who felt what I felt. He was the only one with the same memories of our little Anakin. I needed that bond.

We knew, and had been told by a few people, that many marriages don’t survive the loss of a child. Losing Anakin was more than we could bear. We didn’t need to add the loss of each other. So, we decided, very early on after Anakin’s birth, that whatever was going to happen, we would do it together. We have never been so close, never relied on each other so much. Rationally we know that we have lots of family and friends, but we feel like all we have is each other. Even though I see Anakin when I look into Travis’ eyes, I also see the man who took care of me in the hospital, who saw to it that I ate, who holds me when I cry, and who cried in my arms too. He hurts as bad as I do. He can’t help that Anakin looked like him.

Recognize that people grieve differently. I tend to dwell and cry while Travis tends to distract and not dwell. It’s difficult for us to do both so we take turns. And, when one of us has a horrible day, the other sacrifices his/her own needs. We continue to check in with each other on all levels every day. We feel the other person out, try to anticipate his needs. We forgive when we have off days. I’ve found that the most comfort, most support is Travis. Everyone else seems insufficient (no offense).
****


**Today is two months since Anakin died. Everyone keeps telling us that it takes time, that time will make things better. But, it hurts today just as much as it did the day he died. Time hasn’t helped. Don’t get me wrong, we’re still here, living each day. But the pain hasn’t changed. The drop to tears is just as quick. Seeing his pictures, remembering his face, him moving, remembering saying goodbye is just as extremely agonizing. We have had no enlightenment, no clarity. We have survived, that’s all that can be said.

Two months have gone by. His life seems forever ago, but his death feels like just yesterday. Few understand that. I can’t believe it’s been two months already. Life has really changed for us this summer. We now have life before Anakin and life after Anakin.
****


**Travis went back to work a month ago, but I haven’t. I had taken the summer off in anticipation of taking care of my newborn. So, I’ve been at home. I haven’t done much, and I feel mostly useless. However, when I try to accomplish anything of worth, I find I have no focus. I re-read basic sentences a million times. I flip through pages and remember nothing. I can’t comprehend. My mind isn’t mine, even today.
****


**I haven’t left the house much this summer. I go grocery shopping with Travis and I’ve had to take our dog to the vet, but I’m usually at home. Being out in the “real world” is difficult. It reminds me of what I “should” be doing. Travis and I went to the movies two weekends ago. It was hard for me to go but I knew Travis wanted to go, needed to go. It was okay until I was in the women’s restroom after Batman. I was thinking about how Batman would have been Anakin’s superhero and then a woman walked by me and her perfume reminded me of the NICU. I crashed, the tears started coming and I had to get out of there. I’m terrified that these moments are going to come more often when I have to go back to work in a couple of weeks. Fear has settled in and nested I think.
****


From Travis: Going back to work is difficult. It’s the moving on aspect, the fact that you’re going to have to devote your life to something other than your family and your grief. It’s dealing with people, and their concerns. The same concerns you had before you realized just how trivial they are. You’ll get angry, you’ll want to condemn everyone you see for their menial complaints, even though you know you are no different from them. Then, you’ll have days where you forget for a few minutes. That’s the worst, the guilt that comes roaring in because you’ve forgotten for a few moments. You’ll tell yourself (rightly), that you have to go on, that they’d want you to. This is just time stepping in to do its healing touch, just like everyone said it would. But, just because you know the truth (that you should go on, that you should start to look back with love and joy at the time you’ve had), it doesn’t stop the guilt. The only way I’ve found to alleviate the guilt (as well as dim the pain), is the reassurance of your spouse, because they’re the only one who truly knows what you’re going through.
****


Laughing makes me feel guilty. But laughter is almost oddly reassuring because laughing hurts. Laughter causes the guilt, the hurt, and because I feel like I should be hurting, it’s good. There should be pain. It should be debilitating. And, although I feel like I deny myself happiness, actually I know that there is no perfect happiness for me anymore. Any form of “happy” that I will ever know will be colored by losing Anakin. I read somewhere that there can be moments of happy for us (parents who have lost a child) but not happiness. Sorrow will always be with me now, there, next to everything I do. EVERYTHING WILL BE BITTERSWEET.

Bittersweet, now that’s a word that I can truly understand. Isn’t the English language amazing? Since Anakin was born, I lacked the words, the language was insufficient to describe the loss, how I feel, and, to some extent, it still is. But, then there are words that perfectly describe what will be, words like “bittersweet.” However, I don’t want to use those words with people because they “think” that they know what it means. It’s like…have you ever wondered if the color red I see is the same color red you see? It’s like that, except I KNOW that what you understand as “bittersweet” is, in fact, some imitation of it. This experience requires a new language, but I think that therein lies the problem. Language is meant to convey a shared understanding but there is no shared understanding to be gained from words. Shared understanding in this instance only comes from shared experience. So we, parents who have lost our most precious pieces, are on an island, often shouting to the nearest shore for help, for understanding, for compassion, but only echoes reach that shore. Those echoes do convey pain, a pain that most people see as unbearable, but that isn’t but a nibble of what we originally shouted. I guess we’re meant to inhabit the island forever, and, eventually, we figure out how to commute to the mainland and swim around in their language (of course we’ve given up our shouting by then), and then it’s back to the island.
****


I created a yahoo group for families of children with Thanatophoric Dysplasia. I put a link on the TD page of this site.
****


**Today, Travis and I went to see a geneticist. We pretty much thought that he would tell us that it was random and that our chances of it happening again are the same as anyone else. And, that’s exactly what he told us. He told us that TD occurs 1/100,000 births (that is crazy rare). He also said that there’s nothing that we did to cause it. There is a type of mosaicism that could cause a higher recurrence rate, but even that is especially rare and practically untestable. So, he said the reality of our chances of having another child with TD is <.000000000001% and that was great news. It wasn't anything new or different from what we already knew. I just needed to hear it from an expert. He even said, as far as having more children, that our future is bright.
****


**Today is 4 months since our little Anakin passed away. I can’t believe it’s been 4 months. We’ve both been back at work for a while. We’ve been out in the real world. The real world sucks. No world without Anakin is good. Everyone has said that it’ll get easier, that everyday will be a little bit easier than the last. However, the days aren’t getting easier. In fact, the days are actually getting harder. Seeing his pictures when I get to the office weighs heavier with each day that passes. Listening to his music breaks me down still. Each day, it seems, something new hits me and brings me to my knees. His death is still so fresh in my mind and it comes to the forefront so quick. Hearing his windchimes ringing outside is definitely a comfort. When they ring so loud that you have to focus on them, I stop and talk to him. It’s sad but good.
****


**I want him here so bad. I talk to families everyday who didn’t get their children for as long as we had Anakin and I remember how very lucky we were. However, as I share with those families, it’s never enough.

I tell people that the days are getting harder but no one believes me. The days are starting to hurt so bad that I don’t want to get out of bed or go to work, but I do, Travis makes sure I do, my friends and family make sure I do. I would never have survived this by myself. But, the days are still getting harder. It was just two weeks ago that I had dropped something off on campus and was coming home, but, instead of going home, I turned onto the highway and just started driving. I saw parts of the state I’d never seen before. I drove for a very long time, then turned around and came back to town, just to turn down a different highway and drive forever. I cried and screamed and talked to God and talked to Anakin. I listened to music and thought about my son who I miss. My heart doesn’t break because it was broken months ago when he took his last breath. Now the pieces just scream.

Some days I think I’m going to be okay that day and then something happens. Like the day I went to the cable company to get a cable box and the woman in front of me had a 2-month old, and a 72-year old lady behind me couldn’t quit oohing and aahing over it and talking about how her 39-year old daughter was about to have her first child. I stood there, staring at the ceiling, trying not to cry in that public place.
****


**Tears aren’t foreign to me at this point. In fact, tears are the normal. If you see me not crying, it’s not really me, it’s a fa§ade that I have to put on to function in the real world. I feel most right when I’m crying, when I have that shortened feeling in my chest, when I can’t breathe through my nose, when my head starts to ache from the tears, when I taste salt, that’s right. Everyone else is so worried about the most ridiculous things. I find myself very annoyed by people who are “being screwed,” “having a nightmare,” “at their last straw,” “on their last nerve,” or “having a disaster.” Step a foot in my life! Live an hour in my head! Feel my heart for just a second! I want to scream at those people, they have no idea what a “problem” is!
****


**Strangely enough, I’ve found that I have more faith that I ever thought I had. I have faith that things will work out for the best. I have faith that Anakin will have brothers and sisters. I think I have to have faith. I have to believe that there will be some good again. If I can’t believe that, then what’s the point of going on? What’s the point of trying, of caring, of living? So, I have to have faith. Everything happens for a reason. And even though I shout WHY?! at the heavens, I believe He has a reason. And I have to believe that Anakin wasn’t taken because of me. It wasn’t my punishment; it was his purpose. Although I often have trouble convincing myself of that, I do continue to tell it to myself. Anakin was all that was good in this world. But there will be more. Please, God, tell me there will be more.
****


**December 31, 2008: ANAKIN IS GOING TO BE A BIG BROTHER!!! I haven’t posted my thoughts for quite awhile, partly because I’ve been very sick due to pregnancy. Anakin is going to be a big brother to TWINS in June 2009! When we lost Anakin, we talked to God and told him that we were okay with having more children whenever it was okay with Anakin. And we feel like I wouldn’t be pregnant if it wasn’t okay with him. In fact, we give him the credit for there being two! Sometimes I think I can hear him laughing because I’ve been so sick. We do not feel like we are replacing Anakin because Anakin never really left us. He’s with us all the time. You can’t replace something that isn’t gone. This pregnancy has brought a load of worry, stress, anxiety, and mixed feelings. It has also returned hope to our lives.

But, we’ve found, that in telling others our news, we’ve run into some disconcerting comments. Let me share my thoughts on these. First off, these babies are not replacing Anakin and to imply such makes me very upset! Anakin was not a figment of our imaginations. He’s our son and he cannot be replaced. Second, this is not God’s way of “making it up to us.” God gave us Anakin. THERE IS NOTHING TO BE MADE UP! Third, this does not make the hurt go away. In fact, sometimes it just intensifies the hurt. The daily agony is not gone just because we are expecting. We are not fixed. Thinking of buying baby stuff and looking through baby items reminds us of what we’re missing. Do not believe we’re over it. We will NEVER be over it. Fourth, do not say that this (twins) is God’s way of giving us the same number of babies! When the twins are born, I will have THREE children, not two. Anakin does not disappear. These twins are MORE children, not our first. Try thinking before you speak. I will still be missing my son, one of my three children.
****


**The holidays have been very hard for us of course. This 2008 holiday season is our first after losing Anakin and we’ve felt every bit of it. Before Anakin, we were completely in love with the holidays, especially Christmas. This year, however, we have definitely felt scrooge-ish. We haven’t wanted to shop for gifts or be out-and-about in the Christmas hustle and bustle. Our holidays weren’t as bad as they could have been, though, because we have been acutely aware of how going to “that” place would affect the growing twins. I, especially, have had to be aware of how my emotions could affect my growing babies.

We stayed busy Thanksgiving Day so as to not think about the gaping hole in our lives. Christmas, however, did not allow such a luxury. We did put up a Christmas tree, complete with Anakin ornaments, because he deserved a Christmas tree. Christmas morning was the hardest. Travis and I chose to stay home, away from family, so we could deal the way we needed to. There was much crying. We did receive lots of books for Anakin’s memorial, though, which is a great comfort.

We have faith that 2009 will be a much better year for our family, but, again, it can never be perfect…life can never be perfect again.
****


**February 24, 2009: So many things have been going on lately. I feel like I should’ve written many times before now, but wasn’t sure what needed to be said. First, I’d like to tell everyone that Anakin is going to have two little sisters (or so we’re told). I appreciate all the well wishes. I also understand that everyone wants to follow the girls’ story. However, this site is meant for Anakin, so updates about the twins are going to be limited. I am pondering creating a blog just for them, we’ll see.

Next, I want to discuss what life is like now. Anakin has been gone almost 9 months. I can’t believe that it’s been that long. It is still a daily struggle to walk around in the real world. Travis and I love to sit and listen to his windchimes. We talk to him frequently. I say good morning to him every day and sing to him every night before bed. He is very much on my mind every single second. Tears come just as quick as always if I’m not diligently aware of my surroundings. I think about how he fits into everything I do. Also, his site has sincerely helped me deal. I continue to feel close to him through his memorial and working on this for him. Through his site, I continue to meet others who have also lost a child to TD or those who are just meeting Anakin through other links. Although, I wish there weren’t others to meet, hearing from them reminds us that we’re not alone. The relationships we have with those people are reciprocal (I hope). We hope that we help as much as we are helped.

I also want people to know that every time we hear of people who have lost a child, especially an infant, everything comes rushing back. It’s like we’re experiencing it anew. Just today, I’ve found out that a mother who frequents a website that I also frequent, lost both of her twin girls to a disease this last couple of days. They were a little over 5 months old. I know her pain all too well. And when I first read about her and her husband’s loss, everything came back to me. I was trying to get ready for work and be productive, but I was nearly incapacitated with that initial pain. It’s something hiding there under the surface every minute. So, for others who are also dealing with losing a child, be prepared. That pain that you know and share will quickly rise to the top and cripple you as it did when it first appeared. It’s that pain that binds us to each other. I pray for you all daily, no matter how you lost your child, or when.
****


**April 28, 2009
Dear Baby Boy,

Today is your 1st birthday! I can’t believe it’s been a year since you were born. I wish you were here so bad. I have missed you so terribly. I didn’t get to see you take your first steps or hear you jabber, and I won’t get to see you smash cake all over your face today. I miss everything. Daddy and I are going to make you a cake today anyway. Maybe we’re just torturing ourselves but we think you deserve a cake and we got you a card and Mammaw and Pappaw are going to take some flowers that I arranged for you down to the cemetery for us. I put Cookie Monster in your flowers, I hope you like him. We’d go to the cemetery ourselves if we were close enough, but you know I don’t think you’re there because you’re here with us. Your Mammaw sent a present, but I have no idea what it is, you know how she is.

We will always celebrate your birthday. Today we’re going to watch your videos. Thank God we took so much video of you. We don’t really know what else to do. It’s going to be excruciating, as usual, to try to celebrate when you’re not here. I’ve cried almost daily for weeks in anticipation of this day. Every day farther away from holding you is more painful than the last.

No matter how hard today is, I want to thank you. Your birthday is also my Mommy Anniversary. I became a mommy one year ago today and it has been the most precious year of my life. Thank you for letting me be your mommy. Happy birthday Anakin, my baby boy, my first-born. I love you and miss you so.

Love,
Mommy

****


**June 5, 2009
My dear Anakin,

So, Monday was one year since you left us. Daddy took off work to be with me. He said that he didn’t want to stay at home and dwell, but I think he really worried about what it could do to me and the babies. We did spend much of the day doing errands, but no errand could stop us from thinking about you. Daddy asked me months ago whether I thought your birthday or the day you died would be harder to deal with. Of course I didn’t know then, but now I know that, for me, it was your birthday. Your birthday was a shattering reminder of all that you won’t get to do. The day you died was just an intensified version of what I feel everyday, losing you. It still seems so unfair. I know I shouldn’t say that or feel that way but, to be honest, it’s the way I feel. Even a year later, I still wonder why.

Lots of friends and family were thinking of you on June 1st. There are lots of people who love you. And, I’ve been having NSTs done at the hospital twice a week for the last couple of weeks. I’ve had to tell all the nurses about you, but then they remember you. They have to ask which pregnancy this is for me and when I tell them that the twins are my 2nd pregnancy they say “so one living child.” I have to correct them, and then they remember. You are quite famous around here.

All the NICU girls and other hospital people who knew you say “I hope they have Anakin’s hair,” and “I hope they have Anakin’s eyes.” You were definitely the most beautiful baby boy. The ultrasound tech tells us that she thinks the girls will have hair, but at least one of them will probably have my family’s ears.

So, the girls will be here a week from today. I have crazy anxiety that gets worse the closer we get to delivery. With you, everything was fine until delivery (as far as we knew) so delivery is terrifying. I’m trying to be positive, but, of course, it’s easier said than done. I hope they’re healthy (as I’m being kicked in at least 3 directions right now). What have you got them up to?

Son, I miss you. That’s what it boils down to. The tears come just as quickly because the pain is the same. Every day is June 1st. Every day is a day you’re not here.

I love you.

Mommy

****


**June 13, 2009: Anakin is officially the big brother to twin girls! The girls were born yesterday via cesarean section. Travis and I were completely and utterly anxious. One day I’ll get a chance to write a longer reflection on their birth, but today I’m running on an hour’s sleep. I just wanted to direct any of Anakin’s followers to the blog I created for the girls: http://takinganakinwithus.blogspot.com/

Thank you all for the prayers!
****


**July 10, 2009: So, Anakin’s sisters are 4 weeks old today. I can’t believe it’s been that long already. Although the girls have their own blog, so much of what we’re going through is more appropriate for Anakin’s site. The girls have been an absolute joy. I love them so much. But, I was asked before I had them if I thought they’d make it easier or harder to deal with losing Anakin. For me, it’s more difficult. Everything I do for them is a reminder of what I missed with Anakin. Their wiggles, grins, cries, stretches, spit-ups, five dozen clothing changes, etc… remind me that I didn’t get a chance for those things with Anakin. It also doesn’t help that one of their carseats, their pack-n-play, bouncer, swing, play gym, etc… were all bought for Anakin. Those were his things that he never got to use. I’ve cried many times over that. But, no matter how hard it is on me, it seemed only right that they have most of Anakin’s things. So, for those of you who are interested, it is hard and bittersweet. I know, though, that Anakin is watching over his sisters, and that is comforting.
****


**August 17, 2009

My Anakin,

Hi baby boy. You’ve been weighing on my mind quite heavily these last couple of days. You’re always on my mind but the hurt has surfaced with a vengeance lately. I’ve had several crying spells. I miss you so bad.

Your daddy suggested I hug your sisters tight to help with the pain, but that’s not fair to them or to you. You deserve to be missed. You deserve my focus too. You deserve all that I can give. We didn’t have them to replace you. We didn’t have them to be you. We aren’t giving them the love meant for you. They are our daughters and deserve their own love. It wouldn’t be right of me to use them to heal my pain. They’ve brought hope back, but can’t erase your loss (and they shouldn’t). Hugging them doesn’t make me miss you less. It sometimes makes me miss you more. I’m trying not to burden them with your life and loss. Hopefully I’m going to be successful at that.

I do miss you. I still hurt every day. I broke into tears last night as daddy was playing special songs for your sisters. You would have a lot of fun with your sisters. They are quite the characters. Rory looks a lot like you these days. They are audible poopers like you too. I wish I could see you 3 laughing and smiling together. My 3 babies. Our family here on earth is incomplete.

I’ve been having an issue lately. Now that we have the girls, I’m having a hard time feeling like I’m leaving you out. Leaving you out makes me feel like I’m forgetting you. When I write letters and thank you notes or sign cards, I don’t know how to sign it. Do I sign “Mary, Travis, Anakin, Aurora, and Anastasia,” or “Mary, Travis, Aurora, and Anastasia,” or “Mary, Travis, and the kids,” or “Mary, Travis, and the girls?” Is it silly for me to include you? Will people think I’m crazy (not that I care)? I can’t decide if I should only include the girls because they’re here. I like “the kids,” but I also like to write out names because it makes everyone real, individually. What do I do?

And, just so you know, whenever people ask if the girls are our only children, I ALWAYS let them know that we lost you last year. I tell everyone that the girls have a big brother. At first I said, “we lost a son last year,” but I decided we didn’t lose “a” son, so now I say “we lost our son last year.” You weren’t/aren’t just some child. You are MY son.

I love you.

Mommy
****


**December 21, 2009
My dearest Anakin,

I can’t believe it’s been so long since I’ve written here. It’s not for lack of things to write. Your sisters are 6 months old now and they have shown me how much I’ve missed with you. As I type, Rory is in the co-sleeper counting sheep and Rabbit is in her swing (little stubborn thing won’t go to sleep). The girls still look so much like you. Rory’s profile is especially striking. Your daddy and I have both done double takes at her, like you were laying there. God how that hurts. Rabbit looks more like you straight on. You kids could never deny each other.

At Thanksgiving we all went home. It was the girls’ first time at Mammaws and Pappaws’ houses. Although it was good to see them there, in our childhood homes, I couldn’t help but think about how you’d never be there. Your Mammaws and Pappaws would’ve spoiled you rotten. Oh how I miss you. While we were back home, we took the girls to the cemetery to see your grave. Cousin Brady let a balloon go for you and so did the girls. I hope you got them. The girls sent princess balloons. I bet you couldn’t guess who they were from (ha ha). We also put out Christmas stuff at your stone. I decorated a kissing ball and Mammaw decorated a wreath. I left your Cookie Monster. I think you like him. I’m sorry we don’t get there more often. It was cold and rainy that day so we couldn’t stay long. Daddy and I wanted to stay forever. I couldn’t help but think that that was the closest I’d ever get to having my babies all together, at least here on earth. I wish I could see you all grow up together.

When I see the girls play with each other, I just imagine what it would be like for you to be here too. You’d be a great big brother, but you’d probably pester them just because you could. The girls are still getting things that were yours. The other day I found the barking puppy dog that one of your great aunts got you, and I gave it to the girls. I told them it was yours and that you had it in your NICU room. I told them that you’d heard that same little bark. There are so few things that you ALL can experience. Thinking that you’d heard that toy too crushed me.

Well, Christmas is four days away (actually 3 because it’s almost midnight). I’m anxious about it. I’ve had fun buying for the girls, and wrapping presents, and getting ready for Santa, but you’re always on my mind. I wrapped that Taggie book that I bought for you while I was still pregnant. I put it to the girls from you. I hope you don’t mind. This Christmas is so different than last year. Daddy and I almost skipped Christmas last year even though it has always been so special to us. This year we’ve made a concerted effort to get into the Christmas spirit for the girls. We play Christmas music all the time, and I made Christmas goodies. All of your ornaments are on the tree. But my anxiety is high. I know Christmas morning is going to be hard. I’ll be missing you, more than usual.

I hope you don’t feel like we’re forgetting you or leaving you out. I hope you’re still with us where ever we go. I hope you are with your sisters, watching over them, helping us keep them safe. I take you everywhere with me. I tell the girls all about you. I hope you hear me sing to you each night before I go to sleep. I hope you know how much I miss you, how much I love you. Sleep tight sweet boy.

I love you,
Mommy
****


**April 28, 2010
Dearest Anakin,

Today is your 2nd birthday. I baked you a cake. It’s a Devil’s Food cake with chocolate fudge icing and vanilla icing decorations. Your daddy almost couldn’t eat it because it’s hard to celebrate without you here with us. Your sisters helped Daddy blow out your candle. It’s hard baby boy. Mommy has tried to stay strong today but it’s so hard. You are not two years old today like you should be. You have not walked or talked or eaten baby food or rode on the rockin’ pony or yelled “NO!” in my face. We are left to celebrate the 2nd anniversary of your birth. I am so glad that you were born but I miss what we haven’t had for these two years. I mentioned to Daddy several times how it’s weird that instead of having one two-year old today, we have two almost-one-year olds. Your sisters have shown me how much I’ve missed with you. I wish you could play with them.

I hope you’re okay with how we celebrate your birthday. I’m starting to plan your sisters’ party and I feel like I’m not doing enough for you. I don’t want you to feel left out or that I love you less. I love all of my children the same. I just get to share things with your sisters that I can’t share with you. I know it’s not fair to you. Hopefully you know that I would do the same for you if I could.

Mammaw and Pappaw took the flowers I made for you out to your headstone. Of course you know the white rose is from Daddy. I included a Mario Bros. car in your flowers. Your daddy definitely would’ve made you into an avid video gamer. I’m sorry that we haven’t been to the cemetery since November. It’s hard to take your sisters on a 7-hour road trip. We hope to move closer to you soon. I know you’re always here with me but I feel like I need to be able to sit at your grave. We hear you jingling your wind chimes outside our window all the time. In fact, Rabbit must’ve seen you today because she just stared at your chimes while they were jingling. Will you tell your sisters to take it easy on me?

Son, you changed me. I am not the woman I was before you were born. I’m not sure that I even remember that woman. The problem is that I’m not sure that I know this woman either. I have decisions to make that I’ve been putting off. I need you. I will always need you. I talk to people everyday who are having to bury their own angels. I try to help but I’m not sure I’m doing any good at all. I’m trying to be a good person, to take each day as it comes, and to not be so hard on people. That’s hard for me especially on days like today.

Daddy wanted me to tell you happy birthday, that he loves you with all his heart, and he misses you. We both do. Two years. I can’t believe I’ve been a mommy for two years and yet even that thought leaves me a little empty. Oh man how I love you. I am your red. You are my blue. I am your long lost hug. You are my I love you.

Happy birthday Son. Don’t eat too much cake.

With every tear, hug, and kiss I can muster…I love you,

Mommy

****


** Although our case manager at the NICU and the Hospice staff had prepared us for much of what we would deal with, no one could prepare us for everything. Like, how do you decide what clothes to bury your child in? How do you not feel like you’re killing your child by taking them off the ventilator? How do you survive? Do you get counseling? How do you decide about having future children? How do you decide when to go back to work? When do you take down the nursery? We got advice from a new friend who had also buried her own babies. She was the best resource for us, and we feel like we should pay it forward. Feel free to contact us with your own questions, experiences, or if you just need to talk.