Comfort

Comfort, comfort, comfort, the word keeps chasing anxiety around in my head. I heard it so many times after my daughter passed away--I hope XYZ brings you comfort. I never completely understood what it meant. How can you truly find comfort in any situation where people hope you will? Comfort apparently means "a state of physical ease and freedom from pain or constraint," or "
the easing or alleviation of a person's feelings of grief or distress." Where would that come from? Another person? Anti-anxiety medication? I have no idea.

The closest I ever came to a feeling of comfort in the days after losing my daughter is a blue blanket. It's a fuzzy, light blue blanket that I'd bought to put on our guest bed. It somehow ended up in the family room. One day when I was sitting there in my usual miserable, half-aware state (this would be within the first 3 days or so after her death), a friend of mine put the blanket over me, saying I looked like I needed it. And somehow, that was comfort. That she knew to put it on me, the way it felt at the time. I still look at that blanket and think "comfort." 

Now, almost 6 years later, anxiety has percolated to the surface. I've been through a lot the past few years, and hadn't realized how much until I went back to a therapist today. I went back because of various issues I've faced with my husband, and those have REALLY brought up anxiety. In catching her up on my life, I described the past few years--my own breast cancer treatment, my mother's current battle against it (her third, and toughest), my parents' dysfunctional interactions, the stress of working full-time and having two young children and trying to do it all JUST RIGHT. 

I suppose it makes sense that putting pressure on yourself will eventually make you crack. But, and I'm sure I've written this before, it doesn't happen. I keep waiting to completely break down to a point where someone shows up to take care of me and I'm finally relieved of all responsibility. It just DOESN'T HAPPEN. Maybe that's not how I'm wired. Maybe I refuse to relinquish responsibility of my children. I don't know. I sort of wish for it, but maybe not.

So comfort. That would be the next best thing to a total breakdown. But where do I find it? Where is it this time? 

I haven't written in my diary for many years. I'm thinking I need to start again. Maybe some measure of comfort can be found in its pages. I feel I wrote my way back to sanity before, maybe I can do it again. I feel like I don't know myself, don't know what I feel, need, should ask for, or do. 

Comfort. Desperately seeking comfort.

Dragging

Yes, it's May again. And I'm still here, though obviously not writing all that often. I've all but stopped writing in my personal hardcopy diary. Stopped a while ago, not sure why. But am feeling the need to write it in again. I know it's there for me if I ever want it.

This past weekend was Mother's Day. My husband worked his usual Saturday and Sunday overnight shifts, which meant I spent Sunday as I always do, grocery shopping, cooking, doing laundry, and keeping the kids from going upstairs and waking up their dad. The grocery store was full of dads picking up cakes, flowers, and balloons for their wives. I was a little annoyed, though I knew there wasn't anything we could do about my husband's schedule and Mother's Day is a holiday created by Hallmark, right? Just to sell cards?

Tomorrow is my birthday. I took the day off from work, though in past years, I haven't. Who wants to work on their birthday, right? The plan is for a bike ride (on my new bike) with my husband, then he'll make me breakfast (Eggs Benedict, particularly time-consuming to make), and take me to lunch. Nothing big. I'm just glad to not be working.

Ever since Sunday I've felt like I'm dragging myself around, body, mind, and heart. Next Wednesday will be 5 years since my girl passed away. Once horrible May is finally over, I get to look forward to my first follow-up mammogram since my surgery and radiation. I feel SO heavy I can't even describe it.

May started out just fine. We had my daughter's birthday party on May 3. My in-laws were here for it, and the kids did really well with them. May 4 I did my first (and possibly only) duathlon. It was a lot of fun. I signed up for it because I wanted something to look forward to in May. Now I'm wishing it was at the end of May, because I'm mostly dreading the next couple of months.

June marks not only the anniversary of my mammogram but also my biopsy, and then of course I had surgery last July. Like my daughter's death, I was maybe cushioned by shock, or inertia, through all of that last year. Now I'm having that sort of horrified anxiety, did all that really happen? And getting sick to my stomach thinking about it.

It's over, I'm safe. That's what the therapist used to tell me when I would go in for grief counseling. And I'm pretty good at telling myself that, talking myself through whatever. I just wish this heavy feeling would go away! I've joined some local running groups. Tonight is a workout at a high school track with one group. I've gone the last couple of weeks and enjoyed it. Wasn't planning to go tonight, but my neighbor/friend is expecting me to. I'm not sure whether running will help pull me out of this semi-stupor or if I'll have trouble picking my feet up fast enough to actually run. I signed up for an "adventure run" tomorrow night, which sounded fun at the time. Now I feel like I'm not going to be able to enjoy it or anything else this month. The members of one of the running groups will be at tomorrow's event, and they know it's my birthday. I'm hoping to focus on just that.

A friend of mine suggested (back when my daughter died) that maybe I should change my birthday. She said it again earlier this week when I told her I was feeling so heavy. Honestly, that never appealed to me. It seems like more work than it's worth, and there will always be someone who doesn't go along with it. Most likely, my parents, who still never mention the death anniversary of their granddaughter.


As people told me, it doesn't get easier, you just get better at living with it. But sometimes it is a little harder.

Resigned

I started this post months ago. It's the only one I saved but didn't immediately publish. I guess I wanted time to think about this one a bit more. The stages of grief. Something I've looked at over and over again. Having studied them in various psychology courses in college, they ran through my head from the beginning. But I knew I wasn't going to go through them in order, or that I'd ever reach acceptance. A friend and follower of this blog sent me an article a while ago on the subject. The stages were originally intended as a way for someone to look at their own death or illness, and was later generalized to apply to others. The basic stages are denial, anger, bargaining, depression and acceptance.

I wrote the paragraph below and sentence that follows several months ago.

Acceptance is what you do with a job offer, a compliment, or an apology. You accept an invitation or a gift, not death. I don't think anyone ever says "I accept" when being told someone close to them has died. Never. Instead, you battle with it, wrestle grief, cry, scream, sleep. And at some point, you give up. At least, I have. I was so angry, so sad, I wore myself out. And I've stayed worn out. I start to get angry, but lack the energy to sustain it. It might be that I finally realize there's nothing I can do, that I can't bring her back, that she's gone, that the accident really did happen and the daughter I thought would outlive me has now been gone for THREE years. It might be that I was so angry and so sad for so long that I don't have the energy to be that angry or sad anymore. Or maybe I'm part of life again, not part of death, and can't make myself part of it.

Whatever the reason, I have resigned.

Today, I sometimes feel myself tipping into grief, as though it's a cliff I can fall over. And I generally don't let myself. I went for a bike ride the other day, and in the first few minutes, heading out of the neighborhood, I passed a fire engine with its lights on, siren blaring. For months after losing my daughter, the sight of an emergency vehicle made me freeze up. I never saw the ambulance she rode in, but she loved fire engines, and knowing that her last ride was in an ambulance where she probably couldn't hear the siren still makes me sick to my stomach. Seeing that fire engine immediately made me tense up, and I immediately started pulling myself back from the ledge. I could consciously understand why it caused that reaction, and realizing that again made me absolutely freak out. Everything now is at a conscious level, where I feel as though I can control more of my reactions.

As I told a friend, it is in some ways harder once you get farther away from the incident that you will forever grieve. Initially, it's easy to predict what will upset you. Pretty much anything will. As the years go by, things you haven't been exposed to yet, or the most random things you'd never consider could upset you. I watched a movie sometime last year, Flight with Denzel Washington, that absolutely made me break down. I can't even remember now exactly why. Something about the scene with him in the hospital, the way the people spoke to him, reminded me of being in the hospital saying goodbye to my daughter. I couldn't watch the movie. And I know that type of situation could come up again at anytime.

I haven't accepted that she's gone, I've resigned myself to that reality. One thing I wish I could do is create a list of dos and don'ts for those helping others deal with grief. I have tried to describe some of those here over the years. A friend recently posted this article which articulates a lot of the things I feel, especially the very first one: http://sojo.net/blogs/2014/01/13/new-normal-ten-things-ive-learned-about-trauma

The one thing I'd add to the list in the article is don't expect those who've suffered trauma and loss to ever accept it. I feel as though my strength embodies my forever acting out against it. I've thought of myself as "relentlessly happy" throughout. I felt in the beginning if I could act "as if" long enough, I would actually be happy. And maybe it worked. I didn't accept, I became resigned to the fact of the accident and my daughter's death and started living around it. At least, that's how I see it now.

Happy 7 Birthday

She would have been 7 today. I've been thinking to myself over and over, "It's her birthday" because it seems less and less real every year. Just as at first the horror of her death was inescapable, now her absence is even more inescapable. The danger of moving away from grief is that you always move away from the one you grieve, as if it is grieve itself that keeps you near. I hate that though, she wouldn't want us to remember her death. But she was so young when she died, there isn't much of her life to remember.

I realized over the weekend that my son is now older than she was when she died. We have officially passed through what I think of as the dangerous time. And in doing so have left her behind in yet another way.

I've also left behind the idea that people will forever think of me as that poor woman who lost her daughter. It's a part of me, but not who I am. I am not my job, I am not that woman who had breast cancer, I am not that woman who lost her daughter.

I saw this picture on the Michael J. Fox website for his foundation. And that said what I've been trying to sort out for years--what happens to us isn't who we are, it's what we do in response. Yes, yes, and yes.

This year, I will again have dinner with my family, and our former nanny's family (which now includes a husband and baby). We'll send my girl 7 red balloons, and eat cupcakes in her honor. 

I've been remembering some things about her, little things we did together, little things she did. I remember taking her to the store one day, and the Colbie Caillat song "Bubbly" came on. She swayed back and forth gently, it was a perfect embodiment of the words of the song. I still look back and expect to see her in her carseat doing that whenever the song comes on. When I was pregnant with her little sister, I came down for breakfast one day. She and her dad had already eaten, but as soon as I started eating, she said "Bite?" And took a giant bite out of my bagel. While at a birthday party at a local bounce place for her best friend, she sat in the room while presents were opened. At some random point (well before the end) during the process, she said, "All done!" and jumped out and ran out of the room. A couple of months later, we had Christmas Eve dinner with friends (her best friend's family) and when my friend told everyone to sit down, my daughter did--right in my friend's lap. She wasn't all that snuggly, so it was a surprise to see her do that.

These are moments not captured in pictures or video. And they, like the pictures and video, are bits and pieces disembodied from a life. I hate that they will forever be out of context. Two of my friends have girls that are close to the ages of my two girls. It absolutely breaks my heart to see pictures of them. I actually avoid looking at times, but in some way, it's nice to see how my girls would have been. I didn't have a sister and was excited to see how my girls would have each other.

My second born has risen to the task of being the big sister. She and her brother are so close, he actually told me one day that she is his best friend. I wish she had a big sister here too, though she does seem to understand that she does have a big sister, she just can't see or talk to her like she can her brother.

I still get a lump in my throat thinking of all this. I posted a video of my girl on my FB page today for my friends to see, so those who didn't meet her can get to know her. A few people I've met more recently have asked about her, how she died, etc. And I'm completely open and honest. I'm not just that woman who lost her daughter. I think they know that, even though they haven't known me for long. I'm glad to talk about her, I always will.

Misery Loves Company, For a While

Tomorrow is my very last day of radiation. It'll be the 30th session. I had a lumpectomy on July 26 and start radiation on October 10. After this, I make the rounds of my doctors again (surgical breast oncologist, oncologist, radiation oncologist) and at some point, start taking tamoxifen.

Yesterday, I told my husband I'm ready for this year to be over and am hoping next year is better. He agreed, and said something about how his Chinese horoscope said it would be a really bad year. At first I thought, "Well, it wasn't really a bad year for YOU." But of course cancer happens to families, in some ways. Still, I don't think of this as the worst year ever. Maybe if it had been worse, if I'd had chemo too, or it had affected other areas of my life more than it did...I don't know, I just don't think of it as horrible. Not nearly as horrible as losing my daughter.

I realized that while I initially seek out those who are going through the same thing, I don't want to limit myself to just being with and talking to those people. When my daughter first died, I did seek out grief groups, other mothers who'd lost children, wanting to know that I wasn't the only one experiencing this. I think that comes from a desire to know others have lived through it, and wanting to know how. I told one mom, seeing her on the path ahead of me makes it a bit easier for me to keep walking it.

The thing is, I also need to look around and see others, people on different paths, and maybe to step onto those paths once in a while. After experiencing all of the things associated with breast cancer, the same seems to be true of another misfortune. I don't want to live in grief, or pain, or any of the other negatives. There are some who experience tragedy and continue to live in it forever. I don't want to, and maybe that's why I seek out others.

A friend asked me, shortly after my daughter died, whether I would feel more comfortable in a group of others who'd lost children. I told her that while I did need that sometimes, I also needed others because I didn't always want to be reminded of that. Ten months after my daughter's death, a friend from college, who I hadn't seen since I was pregnant with my firstborn, came to visit. His timing was perfect. Something about his appearance, his very presence, was comforting. He was the one who suggested I start this blog.

One of my old friends from high school said she'd read a study, something about how we have a desire to reconnect with those who knew us before...before we became the mother who lost a child, the divorced single mom, the breast cancer survivor, the mom of 5 children...whoever we are now. I saw a group of friends from high school recently, and while they know of these things that have happened to me, I somehow feel like their perspective of me is different than those whom I've met more recently. I like having all those different pairs of eyes look at me, see me in different ways.

I never try to escape or hide from the facts--I did lose my daughter, it sucks. I have breast cancer, and that sucks too. These will always be my realities. I'm also a mom of two young children. I'm a runner (well, not this month, but hopefully soon), a writer, a wife, and numerous other things. I want to be all of these, and not lose myself in the tragedies. Isolating myself, either completely or with others who are hiding in grief, would, I feel, prevent me from being anything but a grieving mother.

I looked recently at pictures of myself from the year after my daughter died. I won't lie, I look like hell. People asked at the time why I allowed others to take pictures. My second daughter was a baby, and that was her first year of life. I didn't want her to wonder why no one ever took pictures of us. She'll understand (I hope) someday why I looked so horrible, and why I let people take pictures anyway. And she'll also know that while I was miserable at first, eventually I moved forward.

"I'm Fine"

Breast cancer? Really? Because I haven't been through enough yet?

My first mammogram quickly became my second, then two ultrasounds. A week later, I had a biopsy and needle aspiration. On July 26, I had a lumpectomy and sentinel node biopsy. My lymph nodes are clear, but the small lump turned out to be microinvasive. As in, invasive cancer rather than precancerous as initially suspected. The tiny level of microinvasion puts me into a whole other class of treatments.

I'm currently awaiting the results of the BRCA 1 and 2 genetic test. I've seen the surgeon more times than I can count. Had my first appointment with the oncologist a couple of days ago. The gist of that appointment was that if the test is positive, bilateral mastectomy is probably my best choice. If not, radiation. And either way, at least 5 years of tamoxifen with its laundry list of potentially horrible side effects.

Did I mention I'm still recovering from surgery? It wasn't nearly as bad as my 3 c-sections, but having an incision right along where your bra strap hits is pretty awful. Wear just the wrong thing and by the end of the day, you're rubbed raw. And you can't move your arm around too much or it gets sore and swollen pretty much all the way around from your front to your back. So I haven't exercised much until this week. When I saw the surgeon a week after surgery, she asked when I'd return to work. My response: Um, I was supposed to take time off other than the day of the surgery?

I'm tired. Tired because my body is healing and because my mind is overwhelmed. As another woman put it, in addition to everything you're already doing, you also have to be "cancer patient," thinking about what to do next, researching treatments, diagnoses, etc.

Dr. Susan Love is a cancer researcher who last year was diagnosed with leukemia. She wrote a blog post describing why she doesn't like to be called a survivor. Her main point is that survivors have lived through something, something that is over. Cancer isn't ever over. It can come back, it can get worse, and it can kill you years after you thought you'd "survived" it.

Yesterday my surgeon said something about how tough it is to make decisions under pressure. This, however, is something I'm more than familiar with. As a friend put it, it sucks to be an expert on so many tragic things. I can talk to a parent whose lost a child and really understand, and now to other cancer patients. I would love to stop being the expert on tragedies. The experience does help in some ways. I know not to make decisions when I'm not thinking clearly and I'm very good at recognizing when I'm not/can't.

This is different than losing my daughter in so many ways. In that case, while we had to make a lot of decisions initially (memorial services, selling house, etc.) eventually all that was left was living with the grief. There are obviously things that make that worse, like her friends all starting first grade this year. But I don't have to make decisions anymore. Breast cancer, on the other hand, could require a series of decisions over the rest of my life. And ugh, I hate making decisions. After my daughter died, I tried not to make any because I questioned my judgment.

And the decisions I'm making now are like the worst type of gambling ever. The doctors rattle off one statistic after another, none of which applies EXACTLY to anyone, and you have to throw them all together in some sort of grotesque shaker so you can roll the dice. Out comes my choice and then I see what I win or lose.

I'm fine. When someone asks how you are, is that what you say? Most of us do. It seems though, that my parents and in-laws (perhaps as a result of their age?) have started being more honest. How are you? "Well, I had surgery for my gallstones and it didn't go quite right and I have to go back..." Not really what people expect to hear. I'm honest with my friends, those who I've kept updated about my treatment. I'll tell them now that I'm tired, wish I didn't have to deal with this. But usually, I say, I'm fine. I suppose it's my way of not overwhelming myself or anyone else with reality.

My Story

Recent events have made me wonder about my story. There are many, many events that have happened and I'm sure I record not only the actual things that happen but also the way I feel about them. When I tell others, am I really telling them the facts? Am I telling them what happened or am I describing the way I want them to think about me?

A friend has recently suffered yet another loss, on top of two other big ones she's managed to live through. I wonder how she will someday describe these things to someone new, someone who didn't witness them, because the way I see them and her reactions to them seem to be quite different from her perceptions of the events and her reactions. I also wonder now about the things she's described to me from her past, things that happened to her before we met. Were some of these more horrible for her than she lets on?

And in this, I realize that my story can be whatever I want it to be. For months after my daughter died, I didn't want to be that woman, that woman who lost her daughter. I feared that would be my entire identity. Over time, as I met new people, I didn't always tell them about her. I realized a couple of weeks ago that it's actually painful to me for someone to not know about her. If it's someone I'll never see again (e.g. saleslady at the mall) it doesn't matter, but someone I will see repeatedly, such as a neighbor, needs to know so that I'm free to talk about her whenever I need to.

So my story includes my daughter--the good, the bad, and the ugly of it all. It also includes everything I went through, which yes, is sad and horrible but is real. I can't claim to tell the "real" story, what someone simply reporting the facts might tell. But I hope I'm honest, I hope I convey my true feelings and the impact it's had and continues to have on me. I am strong, I can make it through days and weeks and even months now without feeling that impact. But for two years, I couldn't see straight because of the grief. There are things from that period of time that I don't remember and probably never will. Other things I wish I could forget.

My friend seems to be working hard to try to make her story as even as possible, despite all of the horrifying events that make her life full of more peaks and valleys than she might care to acknowledge. I don't want everyone in the world to see all of these in my life, but they're there, and I hope that at least I'm honest with myself and those closest to me about them.

The hardest day

I turned 40 this year and had my first mammogram last Friday. I've been wanting to get one for a while, and my OB initially suggested I start at age 35 because both my mother and her sister had breast cancer. Well, I was pregnant or breastfeeding basically from age 32 until last year, so it wasn't possible.

I wasn't afraid of getting it, didn't fear the squishing of my breast tissue or even the potential results of it all. It was supposed to take about an hour, with the radiologist reviewing and giving me the results during that hour. Well, it actually took 3 hours. They did one mammogram, saw some calcification and did another. They wanted to know more, so they did an ultrasound on one side and saw a cyst, so then they did another ultrasound of both sides. After all this, I finally met with the radiologist. He showed me the results and very carefully told me that basically the next step would be to do a needle biopsy and aspiration. The results show abnormalities, and with my family history, this is the usual course (yes, I used Dr. Google to check all this out).

Within a couple of hours of me getting back to the house, a nurse had called me to schedule the biopsy and gone over all the details. I'm going in this Friday for the hour-long procedure.

I'm not scared, and that feels bizarre. Shouldn't I be afraid? I can only come back to my usual mantra of this isn't the hardest thing I've ever had to do. That day is over, and while I may have to remember or talk about finding my daughter with her soul leaving her body, I never again have to relive that day. And whatever the results, something can be done. That wasn't the case that day.

I remember in the months after losing my daughter, I thought that if I were to fall sick, or get injured somehow, I wouldn't mind and wouldn't fight. That is definitely not the case now. I have another daughter to be here for, and a son. I have many years of life left ahead of me which I have to live to the fullest to make up for the daughter who won't.

The radiologist probably thought I was crazy for my reaction (OK, sounds good, let's do it!) but I'm guessing that'll be my reaction to pretty much anything. The only thing I fear at this point is losing my other children. There are so many bad things that can happen over the course of a lifetime, many of them beyond our control. I fear that, the lack of control, and maybe a day will come when something else horrible happens that I can't do anything about. Until then, I'll just keep saying, this isn't the worst or hardest thing I've ever done, so let's get on with it.

Remember Me

Four years. Four years ago today, I walked into my daughter's room and knew she was gone. Her little soul had left us before we even knew. Will I wake up every year on May 21 and be taken back to that day in 2009? I'm able now, after all this time, to stop myself from being dragged to a time and place where I don't need to be. I spent so much time and energy in the year or two after her death remembering every moment over and over again, my head and heart trying to make sense of it all. I finally got to a place where I realized I need to live, not experience her death over and over. I can usually stop myself from going back, from seeing the events of that day and the weeks that followed.

And yes, I do feel the guilt. I remind myself she wouldn't want me to be there. She would probably want me to remember her playing with her best friend, when they were babies and when they were older. She'd want me to remember the trips to the park, to the children's museum, or to restaurants (she loved to eat). She'd want me to be here, be present with her younger brother and sister. And I am. I'm here for them, I'm here for me. For this life, given to me, which I have to make the most of because now I feel I'm making up for the one she lost.

And what do I want? At her memorial, I spoke, amazingly enough. I can't believe now that I was able to get up and speak. Speaking up for myself is something I've always been able to do, at least, after a certain point in my life. Before that, it was about the last thing I was able to do. I spoke up for her at the service, and I asked everyone to remember her. I asked that they let me talk about her in the years to come, and that they tell me their memories, that they remember or think about her.

It surprises me who has done that. A friend told me that I would be surprised; that those I would expect to be there wouldn't, and others would come forward. And they did, and they have.

On this day, remembering my girl, I will try to keep those good memories of her in my mind, above the memories of the day I lost her. I welcome messages from those who remember her, or at least are thinking of her and those who miss her.

Remember me, remember my girl.

Happy 6th Birthday

I am EXHAUSTED. Today is turning out to be harder than I thought it would. I've had a headache the past two days, thought it was because I went for a longer-than-usual run that wore me out. Last night, I couldn't fall asleep and eventually found myself crying, missing my girl and being sad that she wasn't here for her birthday. When I stopped, I realized my headache had gone away and a weight had lifted. I didn't sleep well, woke up several times and kept having trouble going back to sleep.

Today is dragging by. I didn't want to get out of bed, didn't want to face this day, this day of her without her. For the first time, I posted a message to her on my Facebook page. I've avoided it because I know some of my "friends" aren't aware of what happened and I didn't want to answer questions. This year, I figured either they could ask or they probably wouldn't and I could use the support. But every time another message is posted, it makes me sad again. Sad that all these people are wishing happy birthday to my "angel" or "in heaven" as in, she will never be any older.

Last night I was thinking I planned two parties for her. One was at the house, and was supposed to be outdoors. It rained that day and we ended up mostly inside and trapped on the patio. The other was at one of those bounce house places. She was only two and it was expensive but she absolutely loved it.

I told my daughter last night that her sister's birthday is today and asked if we should get balloons and cupcakes. She seemed excited. Then today my husband told me that she was awake when he got home around midnight from work. She asked him about the birthday, told him she misses her sister (not entirely true because she never really knew her) and eventually went back to sleep. She hasn't said anything yet today. Honestly, I'm dreading having to talk about it.

The plan for tonight is to have dinner with our former nanny and her husband, have some cupcakes, and send my girl some balloons. And now I'm dreading even that. Why celebrate someone who isn't here? I keep telling myself a birthday is for celebrating that she came into my life. Today it's so hard to separate that from her having left it.

The past 3 years, we celebrated with friends whose daughter was my daughter's best friend. They moved away 6 months ago, so that's not an option. Another friend who was so supportive lost her own son a year ago and obviously isn't around in the same way. I miss both of them.

I can't figure out why this year is hard, but as another angel's mommy said, some years are just harder and there isn't necessary any reason why. Tomorrow is a full day, I have to go out of town for work, then am leaving the children with a new sitter so I can do a mom's night in at another mom's house. Right now even all of that seems too much. I didn't think I'd come to this again, when just getting up and starting the day would be hard. I keep telling myself that tomorrow will be better even though I really don't know. This weekend was planned as a regular series of days but it turns out it might not be.

In past years, I wrote something about my daughter to remember her and want to do the same. I have no idea if these are repeats, so forgive me if they are. I have only 2.5 years (little less) worth of memories so I'm bound to run out eventually.

When my daughter was a baby, my husband would dance while carrying her to the bathroom and sing "We're going to the spa, we're going to the spa." Neither her brother nor sister got the same dance or song. We had a landscape crew that would come mow the lawn and trim all the bushes. My husband would tell her "the guys" were coming, so she always called them "the guys." It sounded so funny coming from a 2 year old. While she loved animals, she was mean to plants and would roam around our big backyard ripping flowers off various plants. She did the same at other people's houses. She had balloon radar, and once on a trip to visit my family, she spotted (or sensed) a giant red balloon from at least a mile away while heading to a shopping center.

Happy Birthday to my big girl. If you were here, I would give you the 6 red balloons your daddy bought, sing to you, and have the best party ever.

Birthday Countdown Again

Tomorrow my daughter would have been 6 years old. It was an age I was really looking forward to. The end of the preschooler years and the start of being a big girl. This year is different, this year I have her younger sister not only aware but also asking questions. I told her that her sister's birthday is this week and asked if she'd like to get cupcakes and balloons. She was very excited about that, and asked if she'd get to see her sister. When I told her no, she asked if we could at least call her. And again, I said no, that there aren't phones where her sister is.

Our former nanny said maybe we should just use the actual word "dead" with her. My husband didn't like that. Apparently the nanny told her that her sister is with God and Jesus, because a couple of months after they started daycare, my daughter blurted that out. Not being Christian, this wasn't exactly what I would have told her. So I'm slowly introducing my own thoughts. Telling her that her sister died honestly doesn't seem to me like it would help, because she has no understanding of that word, she doesn't know anyone who was here and now isn't. So ugh, I don't know what to tell her, but fortunately the questions usually trickle out.

Tomorrow will be a whole other challenge. I want to celebrate my daughter, and share that with my other children. But I don't want to confuse her sister, or be sad. I promised my daughter I'd never mourn the day she came into my life, only that she left it. It's impossible to look at pictures of her, videos, think about her birthday and not want to burst into tears. I don't even have a specific thought anymore when I see those things, don't necessarily remember the events when the pictures were taken. I am simply overcome with sadness. And maybe because I don't cry often, when I do now, it feels like an enormous weight.

So tomorrow. Tomorrow I will go buy cupcakes and balloons to share with my children and friends. Tomorrow I will remember the day my girl came into this world and made me a mommy. Tomorrow I will eat a cupcake and send her balloons and miss her. Tomorrow I will celebrate her birthday.

At Arms' Length

In the days and weeks after my daughter died, I took care of her baby sister in a fog. I was breastfeeding, and my baby girl refused to take bottles, so all throughout each day, someone would bring her to me so I could nurse her. Then that person or someone else would take her back. Oddly, at first I didn't want her near me. I felt somehow like I'd done something to cause my daughter's death and didn't want to put her sister in danger. I know now every parent feels that way no matter how her child dies. Still, I just couldn't wake myself up enough to take care of someone else at first. I remember even telling a friend one day that I was fine with her watching the baby because she couldn't f__ up any worse than I had. She seemed horrified and told me I hadn't done anything.

There eventually came a point where I wanted my daughter with me. And she was, constantly. She was such an easy baby--slept well, nursed like a champ, was content and liked being around all kinds of people--that we took her everywhere. I came to realize that I didn't want her away from me. I heard about a mother who lost her son the same way I lost my daughter, but she wasn't there when the accident happened. She was on vacation with her husband and her son was staying with grandparents. I often think about that mother, how it must have been to arrive afterward, knowing you were already too late. The truth is, I felt the same way even though I went through various motions (calling 911, CPR, etc.) of trying to help.

So for years, I've kept my daughter at arm's length. Literally. I wanted to be able to snatch her out of harm's way if I should need to. And if I wasn't, I wanted my husband to, but never told him about at arm's length. So I'd just yell at him if he let her go past that boundary.

My son was born 5 weeks early and spent 10 days in the neonatal intensive care. I immediately had to let go, with no choice or say in the matter. In a way, it was freeing to have the decision made for me. Once he came home, he was in our room for the first couple of months, just like our girls were. His older sister was still in the crib and I wasn't ready for her to be out of it yet. But eventually I was very ready, and they both made the transition relatively easily. And still I worried about her. I've never worried about him the same way. I keep thinking that because he wasn't there, because he was born after the darkness surrounded us, I don't need to worry. I had such a sense of dread from the moment my first daughter was born, I was always afraid for her. And because her sister was there when she died, I worried about her too.

A few weeks ago, both my children went to daycare for the first time. It was really hard--I've never really had someone else take care of them, other than the nanny and occasionally a close friend. But I was good. As a former preschool teacher myself, I know a hovering parent makes things worse for the child. So I dropped them off, and called to check in the first week. They've done pretty well.

But I'll admit it, I still think about what might happen. If something should happen to them, I won't be there, won't get any chance to try to help, to save them. And worse yet, no chance to say goodbye. By the time I saw my daughter that morning, she wasn't speaking, wasn't breathing, and I don't know if she even knew I was there. I am grateful that I did see her, because I wouldn't have believed it was all real if I hadn't (I assume).

Letting go, no longer at arm's length.

Moving On, Moving Forward, Moving Away

Soon, too soon, after my daughter passed away, some (completely insensitive) people used the phrase "move on." As in, one day you'll be able to move on. It immediately made me upset and angry, though at the time I couldn't say why. It didn't take long to figure out that I didn't want to move on. Moving on is what you do after you leave a bad job or horrible boyfriend. You want to be able to say to your friends, "Yes, I've moved on." This means that horrible thing isn't bothering you anymore, doesn't take up space in your head or play a part in your life. Obviously not what I wanted.

So for the past few years, I've talked about moving forward. That is what I felt I had to do. To me, this had a feel of gathering up all the bits and pieces I could salvage from the wreckage of my daughter's accident and death (including my husband and baby girl) and continuing to walk in whatever direction I could. This to me felt like moving away from the accident and horrible feelings associated with it in an attempt to create a new reality for my baby. I didn't want her to be trapped in the tragedy, nor did I ever want to forget my firstborn.

Several months ago, the day came when my daughter had been gone longer than she was on this earth. Then I started thinking of myself as moving away from her life. Hate this one. But it IS what's happening. She was with me for such a short time, it's bittersweet to think that her younger sister is now older than she will ever be. And she has a younger brother she never got to meet in this world and in this life.

The one thing all this movement has made me realize is something I've always known--life goes on, without or without you, and it's up to you to decide whether to get up and go or sit where you are and watch it go by. Sitting is something I couldn't do to my second daughter, and definitely not to my young son.

I do still picture myself with my children under each arm, somehow dragging my husband along with all of our possessions, including those of my older daughter, walking uphill slowly but surely. A close friend of mine who lost her husband very suddenly when my firstborn was just 3 months old often said to me she kept putting one foot in front of the other. That's what I believe I have to do. I never know where I'm going and don't always move in a straight line. And I have on occasion been picked up by a tornado and dumped somewhere, I can't always tell where. But I pick everything up again, and keep moving.

Exhausting, I know, but isn't that what life is all about? It's tiring, messy, funny, noisy, happy, and, if you're lucky, full. All you can do is keep moving.

New normal?

My fingernails are long again. This is truly amazing--I bit them from childhood (as far back as I can remember) until I was 23. I stopped when I was training to be a teacher and a woman in my class told me her daughters were picking up the habit from her. After my daughter died, I started biting them again. As much as I wanted to, I couldn't stop. It's really the only bad habit I have--I've never smoked, drank excessively, overeaten, etc. I managed to start exercising again, cook, sleep well, and so on, but I just couldn't stop biting my nails. Most of the time I wasn't even aware I was doing it. I tend to bite them when I watch TV, or drive, and my mind is preoccupied.

Suddenly the other day I noticed my nails are long again. I mean REALLY long, as in, I'm having trouble typing.

I also noticed it's May 18, three days after my birthday and 3 days before the 3rd anniversary of my daughter's death.

How can both be true? How is it that I'm not dreading it this year? I've been busy with a new baby. And May is now the month between my daughter and son's birthdays, not just the month I lost my eldest. I do find myself thinking about her more often than I have the past few months but there isn't the despair I felt the past two years. I honestly can't explain it. I feel like I should feel horrible, almost feel guilty that I don't.

I do believe that we are meant to survive, to be able to live. I remember the pastor who performed my daughter's service saying that the memorial was for the living, for us to remember her and give us hope in the face of something so bad it was almost impossible to imagine life after it. All I can think is that this is the point where I've again started living, not just surviving. The first two years, there are so many things I barely remember. I know I nursed my daughter after her sister was gone, and I remember my tears falling on her. But it doesn't feel like months and months of nursing (she never would take a bottle), it seems like one day I was nursing her and the next she was maybe 18 months old. There's a huge gap in my life where I was trying every day to just get up and get going. I don't think I do that now.

And ugh, again, it's both a good thing and a bad thing. Three years, really? It only took 3 years to feel better after her death? But did I want to have flashbacks and break down crying longer than that? Oh, I'm not saying that never happens, only that I can at least say it doesn't happen often or regularly. At first it happened every day, then maybe every other day. That's not the case anymore. And as someone told me I would, I do feel as though it means I'm forgetting her. But I'm not, I'm actually forgetting her death and trying to remember her life. Honestly, even that's tough. I'd like to tell other parents you'll never forget every moment of your child's life, but humans just aren't capable of that type of memory. I do remember her, what she looked like, phrases she spoke, the sound of her laugh. But remembering her is more like watching a movie. And I'm so relieved to say that even memories of the day she died are more movie-like now than real life.

When I started to feel bad for not wanting to remember her death, I think of something else another bereaved parent told me. What would she want? Would she want me to remember her the way she was that day? Probably not. Would she want me to cry every day, while taking care of her brother and sister? Probably not. I'm trying to live my life the way she would want. And I guess maybe she wouldn't want me to bite my nails.

The Power of AND

Someone once pointed out to me (not too long ago) that using the word "but" in a sentence generally negates all the words that came before it. I like you, BUT. Thanks for helping me, BUT. I'm happy to be here, BUT. I try my best not to use that word, BUT it's a habit. I don't think most people realize that it really does undo the good things you say sometimes.

My daughter turned 3 this week. She's reached a whole new level that her sister never did or will. Her little brother is 10 months old, and they are each other's biggest fans. I so wish I could have seen my girls together. I wish my second could have had a big sister, she really seems to want one. And I wish my oldest and youngest had met.

I love the children that are here with me, AND I miss my girl who isn't. I'm excited to watch my children grow, AND I wish their sister could be here too. I'm looking forward to my children's future, AND grieving for the future I'll never get with their sister.

In talking to my friend who lost her son, I sometimes feel as though being relentlessly cheerful got me through that first year, maybe two, after my daughter died. That's not true. I am not cheerful. If anything, I'm quiet, somewhat reserved, I rarely shout in excitement, if I were to win a million dollars, I'd probably say, Great! and move on to whatever it was I was planning to do next.

So when my daughter died, I didn't think "I have to stay happy to get through this." I did know it would just take time. At first, I thought it would be like a cut-eventually it closes up and you're left with a scar. It's actually more like getting your arm cut off. The area does heal, in a way, but you will always be missing something. You adapt, learn to work around it, and try to move on.

That's the power of AND. It's both this and that, good and bad, sad and happy. By "it" I suppose I mean life. I realized this sometime last year, when one of the friends who came to my house immediately after my daughter left mentioned that her best friend's birthday is on my daughter's death anniversary. One doesn't make the other better or worse, and they are forced to coexist side-by-side forever.

It's only recently that I remembered that thinking of these as AND rather than BUT would change the way I thought of them. I'm not cheerful, but I would like to think I'm strong, stronger than I ever imagined I could be. AND gives me strength, while BUT weakens me.

These days, I'm feeling very strong. I don't burst into tears every day, week, or month. I don't have flashbacks too often. I can honestly say that I enjoy the parts of life I should, at least most of the time. There is always that thought "she should be here." I want to try to use AND to keep me moving forward, and not let BUT drag me back into sadness and despair.

Open Your Eyes

Yes, I'm still here. It's February 21, exactly 3 months before the 3 year anniversary of my daughter's death. And as I mentioned, I'm not dreading it this time. I'm not counting the days in anticipation of something horrible happening, or at least feeling horrible. I am thinking of her a bit more these days than a month or two ago, but I think it's largely because her younger sister will be 3 (an age N never reached) in a couple of months. She's talking so much, though her sister talked more at a younger age. I can't help but wonder what they'd be like together.

I had another one of those unexpected moments that completely blindsided me. I was watching the movie Contagion with my husband. I hadn't wanted to watch it, because I thought it would be too much like Outbreak. Well, it was worse. It's grim, gray, and I'm not entirely sure why I did watch it. But we almost had to stop. Towards the beginning, a woman dies (lots of people die, if you know what the movie is about, this is not a spoiler) and the doctor is trying to tell her husband. While watching the scene, I kept thinking, wow, they really don't know what to say. The police officer who told me said "Your daughter has died." No "I'm sorry, " or "Maybe you should sit down," nothing. I fell to the ground, dropping the plastic water pitcher I held in my hand. It broke and I was sitting in a giant puddle, though I don't remember getting wet.

In the movie, after telling the man his wife is gone, he starts asking if there's someone he can call. Watching that, I was slowly and then suddenly taken back. I was sitting in my house with people asking if there was someone they could call, and telling them over and over again that no, we didn't have any family in town. I burst into tears, and told my husband I didn't want to watch the movie. I told him that was what they said to me, that I was there again.

I squeezed my eyes shut, tears streaming, and saying something, I can't remember what. He was in the kitchen, but rushed over and said, "Open your eyes, open your eyes. Look at me, look at my big nose." His nose isn't all that big, but hearing that gave me something to focus on and I did open my eyes. He talked to me, was basically talking me back to the moment.

I thought it was strange that at first, flashbacks would take over and I'd close my eyes to escape them. Now, I have to open my eyes. I have to let the memories go. I've been thinking about it, and while grief is and always will be with me, the trauma is what I have been letting go. I can't remember every single thing about that day. Talking about it, reliving it over and over in my mind, and using various therapeutic techniques to face moments of it have helped me let it go. Maybe in some way, letting go of the trauma has helped with the grief. I don't know, I still grieve having lost my daughter, still think of all the things she'll never get to do, have memories of her (new ones still surface occasionally), but I don't have the horrible flashbacks of the day she died.

And for that, I'm glad. Opening my eyes keeps me here, and as always, it's a choice to do so.

One good, one bad

It happened again, two days ago. I was at Costco with my family and was suddenly struck by grief. I mean that literally--I suddenly had a memory of being there with my daughter and my parents, and was so saddened by it I literally couldn't move. My husband could tell immediately, I'm not sure if it was the look on my face or something else, but apparently it was obvious to him that I'd suddenly gone somewhere else. And I had the hardest time pulling myself away from it. I recovered from the tidal wave that took me down while still in the store. But the rest of the day, I started remembering more about the day she died, and that made me sadder and sadder until I found myself crying in my car (alone, which is unusual), parked in the garage after running some errands.

What surprised me the most was not how intensely and suddenly the grief came on, but how much it exhausted me. The rest of the day, I could barely think. I found myself just sitting on the sofa wanting to go to sleep by early evening. And then magically, the next morning I felt fine, despite having gotten less sleep than the night before.

I wanted to write about it that day, but literally couldn't summon up the energy to. And I thought about posting about it the following day, but honestly I didn't want to. I suppose it's part of my choosing to be in the grief or not. I guess this means I'm past the point of feeling guilty when I'm not grieving.

And here's the strangest thing--the day before this, I realized that for the first time since losing my daughter, I'm not fearing May and the anniversary of her death. May has now become the month in between my two younger children's birthdays. I was so relieved to realize that it's already January and I'm not fearfully counting down to May. But maybe it was this realization that caused the wave of grief to hit me the next day, as though my body was reminding me I should still grieve. I'm sure I'll still be sad when May arrives, and ambivalent about my birthday and Mother's Day, but at least now that feeling isn't beginning months in advance.

Riding the waves, good or bad. I don't know when grief will hit but I do know I can ride it out now. That wasn't the case in the early days (weeks, months, years) when I'd have a flashback and fear I'd lose my mind during it. The grief is...more contained, or maybe I just know better how to contain it. I don't want you to think that I'M contained, controlling it, because I don't think that's ever the case. Instead it's a matter of accepting what comes--happiness, sadness, good memories and bad--because that's actually easier than trying to control your mind and heart.

Happy 5th Birthday

Yesterday was my big girl's 5th birthday. I spent most of the day trying not to think much about it. When I did, it made me angry. I couldn't stop thinking about what we should have been doing--celebrating with her sister and brother, maybe going out to dinner, planning a party with her friends--and instead, here we were, having a regular old dinner, doing nothing special.

I feel like I haven't really been angry yet. At first, I was consumed with taking care of things--my baby, memorial arrangements--and then later, moving, working, and so on. I've spent 2 years busy and sad. Now, when I start to think of her, I'm always angry. Angry that she was taken from me, angry about all the things she missed, angry when I see other children her age and wonder what she'd be like, angry her sister didn't get to know her, angry she never met her brother. It goes on and on.

As always, no one from my family contacted us. My brother-in-law called my husband, and I got text messages and a couple of voicemails from my friends. For anyone reading this, know that if you know someone who's lost a child (or anyone, really) any mention of them is welcome. It shows that you care, that you remember that person and think of them even years after they're gone. The lack of any contact from my family was yet another thing that made me angry.

By the end of the day, my neck/shoulder had stiffened up. My husband tried to massage the knots out, and asked how I sit at my desk because I'm always tight in the same place. I told him the day our daughter died, that same area tightened up and now every time I'm stressed, it affects the same area. It's like this physical manifestation of the event, and I hate it.

So I made it through the day. And this morning, I realized it was over. I vowed never to be sad about my daughter's death on her birthday. When I was a teacher, I would tell my very young students that a birthday wasn't just about treats and presents, it was the day for you to tell your friend that you were happy they were born and in your life. I don't feel like I did that yesterday. I thought about sending balloons to her, doing something special, and didn't.

I created a virtual memorial online for my daughter in the months after her death. I haven't really told everyone about it, but a Google search of her name turns it up, so many people have found it. It's also visited by strangers, and others who've lost loved ones and created memories on the same site. Yesterday there were several new messages in the guest book. One was from a father whose 13 year old son was killed in a car accident. He quoted a priest, I assume one who performed his son's service, and said (names removed to protect privacy):

"...the biggest mistake we make when reflecting on a young life cut short in its "Spring-bud", is to speak of that young life as if everything of importance still "lay ahead," in a future that will never now be realized! But, to do that is to make a tragic error! Because [E] LIVED A LIFE! And, even though it was only thirteen short years; [E] achieved a great deal and crammed a lot of living in those years."

That really affected me because I've been so focused on what my daughter didn't get to do. Like this 13-year old, she did a lot in her two-and-a-half short years. And yesterday, I didn't celebrate that.

What did she do? Here's the horrible thing--I'm having a hard time remembering. Last year, I posted a list about her. This year, I'm mostly thinking about those same things. I suppose with only 2 years on this earth, there's only so much to say.

And now I'm so sad. I'm so sorry my girl, that I didn't celebrate you, having you in my life. I promise to do better next year.

Tired Tears

The memorial for my friend's son was two days ago. I had such a feeling of dread leading up to it. Partially because it's such a horrible thing to have to go to, and partially because she asked me to read during it. I agreed, initially thinking she wanted me to read a poem or something. Instead, she told me she wanted to read what she'd written about him. A few of my friends were very concerned, didn't think I should put myself through that. And they had a point--so many things about my friend losing her son have put me back 2.5 years to losing my daughter.

But as I always say, reading her message wouldn't be the hardest thing I'd ever done. So I did, started crying about halfway through and tried to maintain enough composure to remain coherent. Then I went back to my seat and completely broke down crying, literally on a friend's shoulder (my husband went up after me to read the dad's message). I doubt many people realized but I was reading those words to my girl. How could I do anything else?

Afterward, many people came up and told me what a great job I did. I think most of them were unaware how truly difficult it was. I had no idea what to say, other than thank you, and I only read what was given to me, I hope I did it justice. I thought this was the strangest thing. I was being complimented on...I don't even know what. Some people did say it was good of me to do this for my friend. Honestly, I found that odd also.

The strangest thing, however, is how I feel now. I've been getting to bed late because my 5-month old is teething and we're having trouble getting him to stay asleep. So I was in bed a bit late Sunday, had a big cup of coffee yesterday, and by 11 AM could barely keep my eyes open. I thought it was from being up with the baby so much, until my husband came home and asked if I was exhausted. Then I realized it was from the experience of the memorial, the same buildup and release as all the dates associated with my daughter, her birthday, her death, and so on.

This morning, I was so tired I just couldn't get up to do my planned workout. Most mornings, I'm up with the baby around 5 AM and then debate with myself at 6:30 whether a half hour workout or half hour of sleep would be better for me. The workouts usually win out, but today the sleep did. And I'm STILL tired. I suppose I need to come up with something else. There's something about our brains and bodies (some of us, anyway) that makes us sleepy when faced with hard situations. And even once we get through them, we're still sleepy. I don't know if this is depression, some sort of protective reflex, or just exhaustion from the emotional daily grind.

Whatever the cause, I absolutely hate feeling this way and am hoping I find some way to at least reduce it. I need to check in with my friend as I'm wondering whether she's feeling the same exhaustion.

I Want To Feel

Watching my friend grieve the loss of her son is bringing me back to the early days after losing my daughter. One thing I remember clearly now is wishing someone would come drug me, shoot me up with something that would take away all the pain and anger. I wondered for months and months why no one did that. Why wasn't it like the movies, when the mother crumples to the floor, overcome with grief (that did actually happen) and someone rushes over and injects her with something that makes her go slack, stop screaming? I fell down, but I didn't scream, I didn't cry, and at the time, no one came to my rescue.

I mentioned this to a friend months ago, and she said someone did actually give me a sedative. But I refused to take it--I was breastfeeding and the pharmacist had specifically said this drug couldn't be taken while nursing a baby. Of course, I could have given my daughter formula, but somehow, that seemed harder to me. My daughter is stubborn as I am, and almost never took bottles, even of expressed breastmilk.

But it's more than that. Even as she got older, and I struggled with daily life through the grief, my therapist and friends suggested I try antidepressants or antianxiety medication. And again, I refused. As a friend reminded me this week, I said I wanted to feel. At first, it was an obsessive need--I imagined my daughter's death, the parts I witnessed and the parts I didn't--over and over again. Maybe I was trying to undo it, or make it real to me. I can't even describe how horrible it felt, count how many times I broken down screaming and crying, thinking I would go crazy at this unbelievable thing that I had lived through.

I said the same thing at the time that I say now--I want to feel. I didn't want medication because I wanted to know that what I felt was real. I didn't want to wonder whether I was feeling something because of what I'd been through or because of the medication I was taking. I was afraid that if I took anything to change the way I felt or reacted, that someday, when I stopped taking it, I would return to that level of emotion because I'd never experienced it. Or worse yet, that I'd never be able to stop taking it. I'm always wary of something that's not part of me--even the weight I gain while pregnant and the changes my body goes through seem so foreign. It's even worse to me to have my mind be affected by something like that.

I believe our bodies, minds, and hearts are designed to feel, that this feeling is what makes us human and eventually helps us heal. This doesn't mean I don't think anyone should take medication. We are all different--our bodies, minds, experiences--and all need different things to make it through each day. But I do think that if you don't let yourself feel it all--sadness, anger, and despair--you really can't ever move forward. As I described previously, that puts you on a particular path. Is it the path you want to be on? Only you can really answer that.