I have been working on this bit by bit for the last month or so, when the thoughts come to me. Please go to the following link to see what I have put together in honour of Freja as well as all my friends who are missing their babies this Christmas. I am holding each and every one of you close to my heart!
Christmas Without Your Child
Please little one..... Be okay.....
I woke up yesterday to some strange bleeding.... This is TMI, but it was more brown and not bright red. Still, this is very odd to be happening to me at 15+ weeks. I calmly explained to DP in only a few words what was going on, then the subject changed quickly and I tried to put on my big girl underwear and carry about the day as if it wasn't killing me inside as I thought of all the horrible possibilities about why this might be happening. I also tried to rest and tried to explain to those around me that it was important I try not to over do it.... But of course with it being one week before Christmas, with a last minute decision to put new flooring in our bedroom and the hallway (meaning EVERY.SINGLE.PIECE of furniture, storage box, etc had to be hauled out of the room and put in the living room/kid's bedroom,) there was NO rest in sight.
And to top it off, we still don't even have our tree up. I can't find a single spot in this crammed house to put it. I've spent the entire day, and this evening, trying to move things here and there. I've hauled more Rubbermaid totes than I care to admit. But I finally just got pissed off enough to stop caring about ME and just did it, because apparently it wasn't obvious to others in this house as they watched me carry box after box of heavy shit I KNOW (and THEY KNOW) I shouldn't have been carrying.
I give.
I have been having a really hard time lately (what else is new?)
I haven't understood a large part of my grief in the past two and a half years. I've watched those around me who've lost their babies make huge strides in processing and dealing with their grief and moving forward with their lives, yet I still feel very close to where I did, oh let's say, a few months after losing Freja.
I still struggle with socializing. Even with family.
I feel very misunderstood because of the burden I carry with me each day. And alone.
I feel immense, horrible, suffocating guilt over not following my "mother's instinct" and insisting she be treated just as any other baby without an extra chromosome would've been.
I feel burning, raging anger towards those we placed our trust in, those who we looked up to for guidance, knowledge and answers, when we had none. And this anger boils over into my every day life more that I am comfortable with. I don't want to be an angry person who can snap at any given moment.
I also feel very let down by those who we sought guidance from. Their lack of knowledge means that my daughter was robbed of a fair chance at life. I have a very hard time with getting advice from others now, especially anything having to do with doctors. That trust is completely gone.
I have become more active in the "Trisomy" group that I discovered a few months ago. I don't know if it's a good thing, or a bad thing. I often wish I still could just live in the dark and believe what we were told those 32 months ago - That our daughter had absolutely no chance at life, even with all the medical advances that have been made.
I know that I will never know for sure how things would've turned out if she'd had the surgeries she needed. And for that reason, I'm certain I will always be tortured by the "what if's..." I cannot put this to rest without knowing. My mind just does not work that way. This is what I feared, when we finally agreed to allow "nature to take it's course," and decided not to put Freja through surgeries and medical interventions.
It's not a decision that any parent - EVER - should have to be faced with. How do you live with these decisions, when you will never know if taking the other path might've led you to a much more positive outcome? How are you supposed to find peace in this mess? I feel so stuck....
Today is Remembrance Day... A day to take time to reflect and give thanks to not only those who have given their lives for ours, but also those who have fought and survived and have lived with the memories and the horror of things that no human being should ever have to witness... Without them, we would not live in the kind of country we live it. We would not have the freedoms we have, and the quality of life we have. I have always been proud to be Canadian, and today I deeply remember those who have sacrificed everything for all that we now have. I can't help but think about all those parents have lost their children to war. My heart hurts so much for each and every family who has lost a loved one. I feel so angry when I think of war and how it claims the lives of those involved. There has got to be a better way to solve the world's issues. I just hope and pray that everybody in this world will see that soon. It is already too late - There have already been too many lives lost. My thoughts today are very much with those who have loved and lost a family member or friend to war, and also those who live on a daily basis with the knowledge that a loved one could lose their life at any moment because they choose to fight for our country.
I also suppose that today will mark the beginning of a new chapter in the lives of myself and my family - At least publically - Although this is news that DP and I have known for several weeks, and aside from confiding in two close online friends, I have not had the guts to write about it on my blog yet.
I am pregnant!
However, for those of you who know me on Facebo.ok I ask that you please don't mention it over there yet. We have yet to tell our family and friends, but we are not quite at that point yet.
I did meet with my doctor for the first time yesterday. She is such a lovely person and an absolutely amazing doctor and I am feeling very blessed to have been able to get in with her again. When I first called her office, they told me I might need a referral since she is a specialist, but a couple of days later her very sweet nurse called me and told me that they would LOVE to see me again. We even got a peek at the baby yesterday with a portable ultrasound machine and it confirmed that I am in fact 10 weeks along and the little one is looking really good.
So once again, this experience is such a blizzard of emotion, and I do hold tightly onto hope for our family that this will all work out (with the help of a very special little girl who I know lends a hand in bringing very spiritual, life-altering moments to our family...)
I keep meaning to come here on days when my mood is lighter and my thoughts are filled with hope and happiness... Yes, I do have days like that. Of course, that doesn't mean that she isn't on my mind, but sometimes I do have days when I can smile when I think of her and our time with her.
Unfortunately, today is not one of those days. Today is one of those days where I am plagued by guilt for ultimately not fighting for my daughter's life the way I (now) know I should've. I would like to be coming here to say that as time goes on, the traumatic memories of having her die in my arms have softened, and that the decisions we were faced with have now been met with peace..... But that could not be further from the truth than how I am feeling in this moment.
It didn't take long once we came home from the hospital for me to begin my reasearch - I read, searched and found so many resources and supports online for families being faced with a Trisomy 18 diagnosis. I couldn't accept that the information given to us in the hospital about Trisomy 18 was as cut and dry as they said it was. I do accept that it is all they must know though - That Trisomy 18 is "fatal." Yet, every time I asked why it was fatal I don't remember being given a straight answer. Now though.... Now I know why. After reading the thousands of hours I have invested in learning more, and after connecting families who have fought for their children's lives and had insisted on medical treatment just as a child without Trisomy 18 would be given..... Now I know why. And now I am left with not only this hole in my life where Freja should be growing and thriving and living..... But also this overwhelming sense of responsibility for her death.... I did not do enough. How can one carry this burden with them forever? How am I supposed to not let this shred me from the inside out for the rest of my life? No wonder I have been filled with so much anger and this horrible feeling of isolation. How is anyone supposed to understand this heaviness and sense of responsibility unless they have walked this path themselves?
I know there is nothing I can do now. I know there is no turning back the clock and being able to educate myself so that I could make informed decisions about what feels right for my daughter and for our family. I know I can never do that. I put so much trust into those who were caring for her in hopes that they would gently guide us to decide upon the best possible outcome for our daughter. Being told there is zero chance of survival, when in fact with a fairly simple and common heart procedure which is done every day on chromosomally "normal" babies and even Trisomy 21 (Down Syndrome) babies..... I just cannot find peace with any of that..... I know my daughter would've never been a "normal" person had she lived...... But does that mean that she wasn't worthy of living? Does that mean that she wasn't worthy of being given all the opportunities that a child with "normal" chromosomes would've been offered? I am just so angry and sad.... The tears are spilling out of my eyes and I know there is nothing I can do to change this..... I cannot go back in time, but I struggle to move forward too with what has happened in the past.... This guilt is just too much. I should have done more and now it's too late so I have no other choice but to wake up each morning with this heaviness on my heart...
I'm having one of "those" times. One of those times I have become all too familiar with. Another holiday and joyous occasion with family get-togethers, lots of laughter around me, great food, and a sickening amount of light-hearted conversation. This weekend is supposed to represent all that we are thankful for in our lives and I am just not able to find balance. Of course, I am thankful for all the good things in my life - There are many. But it's times like these that I am constantly having to fight to maintain the equilibrium. Tomorrow, Thanksgiving Day here in Canada, marks exactly two-and-a-half years since Freja died. Thank goodness my mom planned our dinner for tonight instead. Earlier in the week I asked (without explanation) if it would be okay if we could do it on Sunday instead of Monday. Because honestly, I just couldn't even stand the thought of having to fake it and pretend that tomorrow wasn't a significantly sad day for me.
It seems like I am always dealt a double blow with Freja's significant days. They never seem to fall at times when I can just sit back and reflect or be sad without the added challenge of the demands of others. Her days almost always seem to line up with other holidays or occasions where I have to slap on a happy face and keep my mouth shut as to how I am REALLY feeling. It's getting really tiring, and right about now I'd just love to crawl under a rock and leave no forwarding address....
I am taking part in a photography project called "Color Your World," over at Illuminate.
Come and see how I've captured grief from behind my camera lens.
Today she should've been turning two-and-a-half. She should've been running through the leaves with her sisters and brother. Or at least, she should've been there with them. I know with a diagnosis of Trisomy 18, she wouldn't have been running. But she still should've been there with us. I know she would've loved this day with the warm fall sun shining down on her face. We have been having above average weather for this time of the year. Today we did very similar things as we did last year on this day. I'm sure it was partly a coincindence, as I'm not sure anyone else around me realized the significance of this day other than myself. And if they did, it was not talked about. But we packed a picnic lunch and took the kids to a nearby provincial park. They ran around and played while we all enjoyed being outdoors in the sun. This year, Soren was right in there with his sisters.
I am thankful that I took my camera because I was able to capture some amazing images. I got one in particular of Soren playing with his "shadow sister," as I often think of Freja being. Although she is not here in person to play with her siblings, I sometimes catch my other children in an extraordinary moment in time where I can see so clearly that the bond of family cannot be broken even by death. Sometimes, I am lucky enough to have my camera with me at that exact moment and I think that the statement those photos make are worth more than a thousand words.
I definately carry Freja with me each and every day. She was especially on my mind and in my heart today and I moved through this entire day feeling very heavy. I wish so much that others around me realized and recognized her special days like I do. It's so hard to feel so alone in my grief and in missing her. But I know I've written about this a million times so I'll stop here.
Freja, mama misses you more than words could ever express. Every day not a moment goes by that I don't ache for you to be here in my arms. I wish I had amazing, strong faith which I could lean on and find peace from, knowing that we would be together again someday. It often feels like the veil of death is so thick and permanent and that makes it hard to see past it, at the possibilities that maybe there is in fact something more after life on earth. Of course I will always hold onto hope that there is, but I am still struggling with this. Pushing and pulling and trying to find a way through these days without you. Trying to sort out my thoughts and find peace and strength amidst the pain of your absence and also the trauma that accompanied your birth, life and death. I'll always feel that I didn't do enough for you and that in itself is a heavy load to carry every day.
I love you baby. Can't believe it's been two-and-a-half years since I first met you.
When I woke up a few mornings ago, the house was freezing cold. We went literally straight from summer, +30 celcius, to freezing temperatures in the span of a couple of days.
I can't put my finger on exactly what it is, but feeling Fall in the air has really gotten to me. I have been an emotional mess. It doesn't even make sense, Fall is not my usually most difficult time... Spring is when Freja was born and seeing all the signs of Spring is typically what sets of my super melancholy mood. Yes, that first Fall without her was filled with such horribly sad memories and "firsts," and I feel like I'm right back there again. The smell of the air, the sight of the leaves changing color and falling... Everything reminds me of the fresh shock of having to learn to live without her...
The change of seasons signals the passing of time... One season after another I grow further and further from the time she lived. People around me seem to forgotten how painful life can and always will be as we continue through life missing her and picturing this "imaginary" child nestled in there next to our other kids. I know that most people think that she is dead... That she is gone... But that is never the case for me. She always lives on in my mind and my thoughts of her are just as frequent as my thoughts of my living children. As I watch my kids do things each day, I always stop for a moment (or two, or three,) and try to visualize Freja in there with them. I also find myself having to defend her place in our family a lot these days. I will never stop doing that but sometimes I run out of strength for fighting that battle and retreat back into myself as I try to protect myself from the pain of others' ignorance.
Fall...... Is so bittersweet. Because then comes Winter, and then Spring. And I feel like I'm already starting to brace myself for Spring and all that Spring holds for us.
Will life always be a matter of counting down....? Bracing myself, and watching the calendar, and catching myself and then falling flat on my face.....? Again and again and again... I just want to scream, "I want off this ride!!!!"
Two-and-a-half years of rollercoaster riding. I feel like I should be used to it by now and in some ways it has become "normal" (how terrible is that?!?) But oh boy, other days it is just too much... Just too draining... Impossible to focus on much else other than the intense feeling of loss... The missing... The wound that is still raw and gaping...
Please excuse the obscene title. I seriously could not think of anything better to name this entry. I hate that what I'm about to spew out is a bunch of confusion and random facts about how my relationship with my mother has been strained since losing my daughter, but I really desperately need to let off the steam somewhere.
We used to be pretty close. Close when it came to relating to insignificant things I guess. We used to go shopping together and we had a ball. We used to talk about a lot of happy, cheery things. My mother is a person who always brushes off difficulties and always keeps a smile on her face in an almost unnatural manner. Since losing Freja, I have become quite the opposite. I used to try being the "happy happy, joy, joy" type, even when I was hurting. I would hide my pain from the world and slap a smile on my face. But I can't do that anymore. I'm not saying that I'm a miserable, frowning person all the time now - quite the opposite in fact. But not I allow myself to feel what I am feeling. There is nothing to hide. There is no reason to hide hurt, or sadness. There is no reason to pretend that I'm something I'm not. I can have weak moments, and I'm not ashamed. I am human, and I have endured more in my life than most people could ever wrap their mind around. And it's okay to admit that. No, I try not to dwell on everything that I've been through since birth, but it's no secret that it has worn on me. Most specifically, this last blow of losing my daughter, which has by far been the MOST PAINFUL thing that I could ever imagine having to go through.
I look back now to the first couple of days in the hospital after Freja's birth and think to myself how different my relationship with my mother was then. I layed in my bed one night in the hospital crying hysterically from both the emotional and physical pain I was in. In between gasps for air I begged for my mom to come be with me. I felt she was the only person in the world who could comfort me and I felt like a vulnerable little child, begging for the comfort of her mother. Little did I know at the time that that type of comfort would never be available.
Instead, there was distance. And hurtful comments which despite my efforts to forgive, still come back and haunt me. I think for the most part I have done well to forgive and move forward from the things that were said which made my head spin, but it is impossible to forget. That hurt is so deep rooted and it's impossible to not think about it, although I have been trying to accept that people say stupid things. I cannot change what others do or say to me, but I do struggle with trying to figure out why. I desperately need to stop trying to figure out why and just let it slide off me instead of taking it so personally.
I think what it comes down to is that I am incredibly thin-skinned since losing Freja. I cannot handle conflict and stress. Especially really stupid, selfish conflict and stress. I have tried to handle this kind of thing in the last two-and-a-half-years in the only way I know: To limit my exposure to those who frazzle my nerves and set me back in my journey of healing. To not be around those who fail to acknowledge just how trying each day can be and to avoid those who cannot be sensitive or find kind things to say. Not just about Freja, but about everything in life. Her and I have had more disagreements than I can count about things as simple as disciplining children (which for the record, she is pretty much completely against. Even something as simple as saying "no" to a child and giving them limits.) I don't even think these kind of topics should be up for debate. It's my life, and they are my children, and if I feel I should put my foot down about certain things then it is my right! I will not be told what to do or how to live my life! I have come a long way in the last two and a half years and I know what is right for my family and I.
I hate playing mind games and I really hate trying to be controlled. It seems we can never just have a nice enjoyable conversation as two adults. It always has to come down to her telling me what to do when I was not at all looking for advice. And she doesn't relent. If there is ever a time I need to vent to her about something, it always comes down to the fact that there must be something wrong with ME because I am upset. I can never just get an understanding shoulder to lean on. I don't get it.
A daughter will always try to seek a connection with her mother. Understanding of a mother goes a long way. I feel like I have been sticking my finger in the fire again and again, only to be burnt each each time. I could probably count on one hand the number of times that my mother and I have really connected since Freja died. Most of the time we just do not see eye to eye, and she refuses to (or is incapable of,) trying to see things from my point of view.
I know my mother will always be there in some ways. Bringing my children gifts of clothing and toys and whatever material things they could ever want. But that doesn't fill the gap. I wish we could have an understanding, her and I.... As two mothers who have both lost children, I wish this could've brought us closer together. I wish she could've shared more wisdom and compassion with me. Instead, it has left us awkward and anxious when we are together. And empty. And my nerves are shot.
A daughter will always seek that connection with her mother.
I never pictured that things would be this way.
There have been so many instances over the past (almost) two-and-a-half years when the things that come out of my children's mouths have blown me away. More specifically, the things that relate to grief and their processing of death. My two oldest girls were still quite young when Freja died - Five and not quite two. As time has gone on, their sister's death has never been far from their thoughts. The other day on a quiet car ride, my three year old asked me something about the previous day, and being able to go back to that time.
"No sweetheart," I said. "We cannot go back to yesterday. We can only hold yesterday in our memory and revisit it that way. As much as we may want to, we can never go back and live it again."
And then there was silence and as I glanced into my rear view mirror I could that she was deeply contemplating that thought.
A few moments passed and she stated, "Mommy. I need a magic wand."
"Oh......? What for...?"
"Because then I could go back to yesterday!"
The conversation kept going for a little while, but soon my 8-year-old mentioned that if we had that magic wand that could take us to the past, we could go back to the time when Freja was still in my tummy.
The girls and I chatted about this for a while and then it got more and more complicated, just as my thoughts often do too, when I try to blend both these worlds I exist in together in my mind. You see, I exist in this limbo, this place caught between, with thoughts a little girl who grows up only in my mind. And then of course there is this world of reality which everyone else can see. The difference is that I see four children. The rest of the world only sees three.
"Maybe if we could go back to that time when Freja was still in your tummy, we could have Soren there too so he could meet her too!" My eight-year-old exclaimed.
These thoughts circle my mind each day. If only... Couldn't I have them both.... Picturing three of my babies, each only a year apart... Picturing the chaos which I'm sure our livese would be. But it would be full. It would be RIGHT.
It both warms my heart, but breaks it at the same time to know that my girls have some of these same thoughts. They picture how things should be too.
They miss their sister.
I have so much to say, but it's been hard finding uninterrupted time to sit down at the computer to write. I have a long list of blog entries in my head that I've already wrote. As they come to me I try to file them away in order in my mind, but once again, it's hard to actually find the right moment to put them down in words here.
A couple of weeks ago, I had a much needed breakthrough experience. DP and I sat down in the evening, a bottle of wine between us, and stayed up till the wee hours of the morning talking and enjoying each other's company. We talked about things we haven't talked about for years. We really connected in a way that we haven't in a long time. What made it such a healing experience was after a few glasses of wine, somehow we (as we always seem to do,) got on the topic of Freja. I seem to be able to open up a million percent better when some of the inhibitions are gone (I know it's not necessarily a good thing, but at this point I'll take it!) We haven't spoken as openly as we did that night about Freja, and how it has affected me as deeply as it has, since a few months after her death. Since about the one year mark, I have kept so much of my suffering to myself. It has really worn on me and affected every aspect of my life. Not to mention the resentment of feeling so abandoned and alone which was really beginning to wear and take it's toll on our relationship. I don't talk much about DP and I here, but let's just say that things were really not looking very good from my end.
I know it's not fair of me to expect him to read my mind when I'm feeling horrible, but to me, it is so obvious and it's hurt me time and time again that he never did acknowledge my pain. Also, the fact that I'm the only one to ever bring her up in conversation... Oh that stings to my core! And that I've made more visits to the cemetary alone than with him is also another weak spot for me. Yes, we talked about so much... So much that needed to be acknowledged for such a long time. About Freja, the trauma that this entire experience has caused me, about faith and how I need answers.... It's true - Nothing good will come from a loss of communication in a partnership. I was becoming such a cynical, bitter, smart ass and I really hated that my anger manifested in that way toward him.
So in these past two weeks, I have felt a lot lighter. I can smile at him, and really mean it. I know I can lean on him once again when I'm hurting. I have to know that I can't possibly do this on my own. I need to stop being so stubborn, and learn to voice my needs. I have never been good at this. I have always perferred to deal with things on my own, but I realize that this is one area where I can't. Nobody understands what we have gone through better than one another. I thought we had lost that, but I've re-discovered it and I can't even explain the relief....
I hope this continues. I know it's all in how I handle it. I'm going to try my best.
Why oh why must everyone count my kids? Even strangers on the street. It seems I can't go anywhere these days without at least a couple of people randomly commenting on my three children. "Two girls and a boy, how perfect!" If I hear that one more time I think I'm going to lose my mind, and my manners.
It seems to be the most common conversation starter around here. People unknowingly about to dig themselves into a deep pit of discomfort, and I awkwardly watch them squirm when I drop the bomb. I bet I've been the result of many people never asking that question anymore. The dreaded "How many children do you have," one.
I couldn't bite my tongue any longer last night after hearing one too many times how peroect my family was, with the two girls and one boy. This poor girl (well, she was only two years younger than me, but painfully far from seeing all I've seen in my 29 years on this earth,) started counting my children while we were on the beach last night. Trying to figure out which were mine amongst the crowds of people around us, she began counting.... One girl..... Two girls..... And one little boy who was hanging out in my arms! She began to go on about how cool that was, since she was from a family of three girls and one boy.
Ouch.
Our eye contact quickly broke, as I searched myself for what to say next. And then I did it.
"Well we had three girls but one of them was born two years ago and only lived a short while....." And I trailed off.
And of course I was met with a desperate appology and I looked at her and saw tears in her eyes as she tried to paddle her way out of this one.
I wish people would realize that it never goes away. If I experience an opportunity to bring my daughter into the conversation it is not a bad thing (at least to me.) I wish that everyone would realize that although I'm not talking about it constantly (for the sake of others,) I do constantly think about it. Not a second goes by when I'm both awake and even sleeping when I am not painfully aware that a huge part of me is missing. I'm amazed by how profusely people appologize and wish it hadn't been brought up 'for my sake.' My daughter might have died but it does somehow bring me a bit of joy and comfort to have her life acknowledged and to speak of her as I do my other three.
Thanks to Kristin for starting this weekly theme where we can update and keep track of our rainbow babies latest antics and milestones. I agonized for quite some time whether or not I should make this a part of this blog - my grief blog, or my rainbow baby blog that I started nearly two years ago after I found out I was pregnant with Soren. I decided to go with this blog, since it has more followers and I have only written in my other blog once. Soren is, after all, a part of Freja's story... So I guess I will continue to write on occasion about him here as well.
Our latest adventure is walking. Soren finally took his first steps by himself last night, around 9:30 PM! He slept in until around 9 this morning, and I nearly woke him up because I was so excited to watch him try to walk some more.
It's so cute how he holds on to his shirt for balance...
I love my little man!
Some time ago, I found an online support group for parents of Trisomy children. I didn't read much there at first, and actually it wasn't until late last week that I decided to poke my head in after a few months of not visiting. I skimmed the topics, and realized that the majority of the people posting were parents with LIVING trisomy 18 children. It cut like a knife, but I couldn't stop reading. Reading about the surgeries and procedures that these children have had to be able to live. Seeing pictures of beautiful wide-eyed trisomy children smiling and THRIVING.... I cannot even begin to explain the emptiness that has consumed me since then. Every day I have been lost in thought and overwhelmed that perhaps we did make a very, very bad decision to not treat Freja's medical issues and give her a chance to live.
I have felt such anger over the last several days towards the geneticist and doctors who told us that there was basically a 0% chance of Freja surviving because her condition was "incompatable with life." Did they mislead us? Did they maybe just not know enough about this condition, and that with persuing corrective surgeries etc, that these kids can live fulfilling lives?
And then there's the anger I feel towards myself. If I had known about her condition early on in the pregnancy, maybe I could've done more research of my own and had better plans in place. I was in such a huge state of shock during those 15 days that she lived, and I couldn't even decide what to order for lunch in the cafeteria, let alone make huge life or death decisions about her care. Maybe if I would've had more time to prepare before her birth, and let it all sink in..... Maybe, just maybe things would've been different.
Oh this guilt...... I don't know how I can live with this forever. It's not like my daughter was born sick and the doctors did everything in their power to save her.... I think I would be doing so much better in this journey if that had been the case. If we had exhausted all options and had no other choice but to let her go. Trying to live with the decision to not pursue the potentially life saving surgeries is just too much..... This is just too much to carry with me forever. I've always carried huge amounts of guilt with me about everything having to do with Freja - Her birth, her life, her death, and even two years after her death my struggles with keeping her memory alive.
It kills me to think of all that I've missed out on with her.... I never even got to see her beautiful smile. I'll never forget when the geneticist told me not to read too much online (which wasn't even an issue at the time because I had no internet access in the NICU, and also because we were so caught up with just spending every second with her that we could.) Why would he want to keep me from learning more about Trisomy 18 and making more informed choices for my daughter? Even if we had chosen to not persue all the surgeries that Freja needed, if I'd had an opportunity to do tons of research and ask all the questions I need to ask the 'experts,' and push the limits a bit, maybe I would feel better than I do now.
I just feel so let down. Like her life was not considered worthy in the medical field because she wasn't a 'normal' child. Was it because of the expense of the care she would've needed? So, so much guilt. I don't think I fought enough for her, my beautiful little baby with the brightest blue eyes I have ever seen.
First of all, thank you to Angie at Still Life With Circles for bringing so many people together to put into words where each of us are in our grief journeys.
I know I'm kind of late to do this, but I can't even begin to count the number of times I've sat down at the computer to write this post, only to be so overwhelmed putting all my feelings into words that I've had to get up and walk away. I've literally walked away from the computer tons of times because I just wasn't sure how I would possibly cram as much feeling as I need to into one post.
The last two years have been so very intense, beginning with Freja's very unexpected diagnosis, then her short life, and death which followed soon after. Although my grief has changed somewhat from what it was like at the beginning and I guess I have become a bit more 'comfortable' with carrying it with me each second of my life, the fact of the matter remains: She is gone. I will always be missing one of my children. I will never get to raise one of my children and watch her grow. In my mind, (and in every area of our lives that I can possibly fight to keep her as much a part of our family as our three living children,) she will always exist as our third child. When my kids are sitting together, I will always picture here squished in there between her two sisters, or next to her little brother. She will always and forever be in my thoughts, long after her life has faded from everyone elses mind. And it will always cut like a knife to have someone forget, or to think that I am perfectly okay and happy again like I once was before I knew that such devastation could possibly exist. I will never be that person who I was before this happened, that care free mom who had never experienced the trauma of literally losing a piece of yourself and a huge piece of your future as well.
I am more functional in life now than I have been in the previous two years, which is more that I ever could've imagined I'd be again and for that I am grateful. Yes, I can actually get out of bed and get dressed and keep up with the house, meals, and cleaning. On most days I can even take the kids out of the house to do things with them, for their sake. For pretty much two years, I struggled in a huge way to even leave my house. I had absolutely no desire to do anything, no desire to be around anyone and I really had to be pushed to go anywhere. I still struggle with socializing, because everything has changed so much. My values have changed, and I have definately become more sensitive to lots of things that people say. Especially when I hear other moms complaining about such trivial things. I just have no sympathy for them when they don't realize what's truly important in life. It bothers me endlessly to see others taking simple things for granted. It bothers me that other moms who haven't lost a child are innocent enough to be able to take simple things for granted. I feel like I've seen a side of life, this secret and unspoken of side of life, and it has changed me so deeply that nobody truly knows me anymore. It is a lonely place to be, but I am learning to cope. I am learning to stand on my own two feet, and to carry this very heavy load with me gracefully.
However, I still continue to fight this battle within myself. This battle of anger and bitterness that developed soon after Freja died when I just wasn't able to get the understanding and support of others around me the way I needed so desperately. There are some thoughts which play over in my mind occasionally and begin to fuel the fire of anger once again. Like going to my parents' house and seeing that they have a picture of their DOG on display, but not the beautiful frame with Freja's pictures that I put together for them. They keep her pictures in their bedroom, not with all the other pictures of our family members that they have adorning the walls of their house. And then I wonder.... Was this done purposely? Or are they just that clueless to not think that such a gesture would not hurt me so much? And then the anger and bitterness once again begins to be fed back to life and I can feel it building and burning in the pit of my stomach until it threatens to poison my soul.
I don't want to be an angry person, but I don't know how to not let things like this get to me the way they do. I am so fiercely protective of Freja's memory, and acknowledging her as a part of our family. I am deeply hurt by all the days that have passed when I've clearly been struggling, but nobody has taken the time to acknowledge that I am hurting so badly. Is it too much to ask others to just put their hand on my shoulder and say something kind when they see me having a bad day? I am not very good at coming out and asking for what I need. I know that I can't expect others to read my mind, but I think when I'm feeling the weight of the world on my shoulders it must be pretty obvious to others. Why try to change the subject, when there is no way that the things which are on my mind are just going to go away. None of this will go away. This is my reality, and I get to live with it for the rest of my life.
I have really learned to stand on my own two feet. I have really come to terms with the fact that others won't always be there, or can't be there, the way I need them to. Maybe it is because they don't understand this kind of loss. Maybe it is because they are uncomfortable with this kind of loss. Maybe it is just because they don't care, or don't want to take the time to care. But, I am learning to live with this. I guess I have become a bit jaded by all these complicated aspects of loss. But I am surviving. And trying to be as kind to others as I can be despite the ignorance that they've shown me.
I just don't think I could ever possibly explain the dynamics that have changed within every piece of my life. Everything has changed. Ever aspect of my life has been shaken to the core since losing my daughter. Every aspect of my life has been questioned, and scoured in hope of finding purpose, and meaning. I have searched my soul for strength, and have crumbled when I could find none. I have done it again and again and again. But, I keep getting back up time and time again, and I guess that it what matters.
Of course the pain of losing Freja will never go away. However, the intensity does fluctuate more than it did at the beginning. Sometimes I can smile now and feel much more joy than I did before when I think of her life and her time with us, instead of being permanently blinded by the sheer trauma of the entire situation like I had for much of the previous two years. I didn't think I'd ever be able to say that, so this is huge for me. It is such a delicate balance - Honoring the beauty of her life, and the pain of her death.
I wish I could see pregnancy, birth, and babies the same way I did before losing Freja. It makes me so sad that the whole experience of having babies has lost it's innocence for me. Every time I hear of someone getting excited about a pregnancy I always have these negative thoughts and I want to warn them of all the things that could possibly go wrong so they are prepared. Of course I don't feel this way about the news of babyloss parents' pregnancies because I know that you too understand the realities of loss as I do.
I am incredibly thankful to have my living children who always remember their sister. It is usually just them and I who visit Freja's grave together now, and it brings some relief to my heart when they ask to go see her. To know it is important to them means the world to me. I am also thankful for my sweet rainbow boy who's birth has renewed my life and reaffirmed my abilities to bring a thriving baby into the world once again. I am thankful that my girls are quick to correct someone who dares to leave their sister out. They talk about her often, and my three year old asks to go visit Freja's grave at least a couple of times a week. I never thought I would say this two years ago, but it brings a joy to my heart that I can not explain when she asks to go see Freja. Only another parent who has lost a child could ever make sense of the fact that it actually brings JOY to me when my daughter requests a trip to the cemetary so that she can be with her sister. I'm sure that most people would find that really odd, creepy even. This is why I find it so hard to relate to those on the 'other side of the fence' - Those who don't have to live this reality on a daily basis. I am different. I accept that I am, but I am still trying to figure out the delicate balance of it all.
And of course, I am forever thankful for Freja's life. I cling tightly to those 15 days of her life and every day I replay those memories of her with us in my mind. She is one of my children and although she is not physically here with me, I have grown very secure in the fact that she will always be my child just as much as my living three are.
And oh God, do I miss her.
The past several weeks have been, to say the least, a whirlwind.
Between March 7th, and May 2nd, we celebrated five birthdays in our house (but six parties - as my oldest dd had a separate party with her school friends in addition to our traditional family party.) Two of these birthdays included Freja's second as well as our rainbow boy's first. In between a couple of the birthdays, we've also had to face Freja's angelversary as well her days of life. Those days of her life will always be very bittersweet and reflective days of our time with her when she was alive. I had a difficult time this year facing all of her special days. Maybe it was because as time passes, those around us seem to forget the significance of ALL her days - Not just her birthday. When you have a baby who lives for such a short time, you hang onto each one of those days and the memories of those days, because it is all that you will ever have. In my mind, I can still go back to our time in the hospital with her and it still so vivid. I can't believe it has already been two years.
I am thankful to have had my bereavement group to go to over the past three months, but that too has now ended. It was a great outlet to shed some of the pain, and just talk face to face with people who understand grief because they are living it themselves. It started in February and has seen me through my most raw time of year - Spring. Thank goodness for that outlet. It was very much needed.
As I mentioned before, Soren's first birthday was last Monday. I was hugely pumped up for it. I wanted his party to be just right. A most wonderful friend of mine made a beautiful and ever-so-appropriate rainbow cake for his party! It took her almost an entire day to bake cake layers in every color of the rainbow and decorate it with fondant and gorgeous colorful stars. I will have to post pictures, because it was just too beautiful to not share!
I have invested so much emotion and mental energy planning, preparing, and bracing myself for so much of the past two months, and there is just nothing left in me right now. I feel so depleted. So drained. My mind is so tired, and although I've been wanting to sit down and write in my blog, when I did find a moment to be on the computer I would just sit here and not even be able to string a sentence together. Over the past few days, I've been submerging myself in everything I've been neglecting since March arrived. The house has been a disaster, and I know I haven't spent the kind of quality time with my kids that both them and I are needing.
I am feeling such a mixture of emotion now that March and April have passed, and May is well on it's way - Both relief and sadness that I have survived the milestone of another year without my little girl, and my hope feels a little bit more renewed to have celebrated my son's first birthday.
Today was my oldest daughter's birthday. It also happened to be Good Friday. Two years ago, Good Friday happened to fall on April 10th, which was the day that Freja died. For the last two years, everything related to Easter has brought back a flood of feelings related to her birth, life and death.
Of course I wanted my daughter's birthday today to be filled with happy memories for her sake. But there was also that immense sadness that I carried with me all day as I thought about what Good Friday brought us two years ago.
Life has become such an balancing act. Trying to balance the sad memories with the happy ones. It seems that so many 'milestone' days of Freja's have also happened to land on other holidays or occasions. Christmas, Mother's Day, my birthday, Easter to name a few. I am always caught between these two worlds - The world of trying to live in the present and enjoy the happy moments as they come, and the world of grief which often brings with it immense guilt and thoughts that I'm dishonoring Freja if I dare to appear too happy.
I want to be happy, but I don't want to be too happy. I don't ever want to forget the place I've come from, yet I don't want to be miserable for the rest of my life and deny myself the opportunity to experience happiness ever again. But I don't want those around me (especially the ones who know our story,) to ever think that I am completely happy, whole, and 'over it,' because I know that none of that will ever be possible.
Such a balancing act this is. I don't know that I will ever find a perfect balance as I try to walk through this life with such a large piece of myself missing, and as I continue to learn how to mother three of my children on this earth and the other from a distance.
Have you ever had one of those dreams that are just so real and vivid and you could almost swear you were really there?
....... And then you wake up and cry because you suddenly realize that it was just a dream. And you are once again flung into the reality that your child is dead. Gone. Never coming back.
I had the most intense dream last night about Freja and I've been left thinking about it all day. In my dream, I was pregnant and about to give birth to her. Although she was still going to be born with the medical challenges that she had, her condition was know about ahead of time by a team of doctors and the NICU, who all awaited her arrival with a plan.... A plan to quickly operate and heal her.... A plan to fix her broken organs and give her a chance at life, instead of telling me that there was nothing that could be done and commiting her to palliative care. In my dream, I was scared but hopeful as doctors around me reassured me that they would do everything in their power to save her, and they were certain that she would live... I started to believe them and let my guard down. I was beginning to allow myself to feel hopeful...
....... And then I woke up and felt like I'd hit a brick wall. I really wanted to stay in that dream.
It's hard to believe that at this time two years ago, I was just about to go to my daughter's burial. My mind has been swamped with thoughts and memories of the significance - and horror - of this day.
The kids and I are just getting ready to go visit their sister, and we're taking the Easter decorations that we picked out yesterday to decorate her grave with. I'm not sure how I'm feeling about this day. I thought I was doing okay and would hold it together, but as time ticks on, I'm scared of how I might feel when we get to the cemetary knowing that it's been exactly two years since I had to face that horribly traumatic day of placing my baby's tiny body in the ground.
I have so much more to write about, and birthday pictures to post too. I'm going to try and find some quiet time this evening to process my thoughts and write it all out. The last 22 days have gone by so quickly. I've been lost in thought and reflection (and the hecticness of life,) and time has continued to speed forward.....
Remembering how my life changed two years ago on this day. At 6:10 AM, a piece of me died with her. We gathered up our things and began our journey home from the hospital without our baby - exhaused and defeated. These last two years have been such a whirlwind of trying to put the pieces back together. I'm resigned to the fact that it will be my life's journey. Miss you every second of every day, Freja
I drove around yesterday afternoon while the kids napped in the van. Listening to Norah Jones and armed with my camera, I managed so get a couple of shots for Still Life 365. I played this song over and over, and was amazed by how the lyrics feel like they could be my very own, especially during this time of year.
The sun just slipped its note below my door
And I can't hide beneath my sheets
I've read the words before so now I know
The time has come again for me
And I'm feelin' the same way all over again
Feelin' the same way all over again
Singin' the same lines all over again
No matter how much I pretend
Another day that I can't find my head
My feet don't look like they're my own
I'll try and find the floor below to stand
I hope I reach it once again
And I'm feelin' the same way all over again
Feelin' the same way all over again
Singin' the same lines all over again
No matter how much I pretend
So many times I've wondered where I've gone
And how I found my way back in
I look around awhile for something lost
Maybe I'll find it in the end
And I'm feelin' the same way all over again
Feelin' the same way all over again
Singin' the same lines all over again
No matter how much I pretend
"Feelin' The Same Way"
Norah Jones
I can't believe that it's already been a week since her birthday. Each day following her birthday, I've been consumed with thought and have been trying to relive memories of what we were doing two years ago at this time. Sometimes it's so random during the day. I will be loading the washing machine and then it hits me out of nowhere - I feel almost frantic to go back to that time and feel the weight of her in my arms.
Two years.
It feels life a lifetime ago.... Yet at the same time it feels like it passed in the blink of an eye.
Freja's birthday turned out better than I expected. I mean, it will never be 'perfect,' since the birthday girl will never be there. But there were many beautiful people in our lives who made it a very special day. To know that there were people all around the world thinking of my daughter, lighting candles for her, and doing things to honour her made my heart sing. To get a phone call from a very good friend, and a few family members brought a bit of calm to my day. My dear friend Amy has gone above and beyond her call of duty and has done some very special things in Freja's memory during these past ten days. I also happened to receive Freja's InspireRing on her birthday which Lea carefully crafted for her. It was kind of like getting a birthday present for her, and I felt much joy from the perfect timing! We also received flowers from my mother-in-law and sister-in-law, and DP surprised me with the most beautiful red rose. He took a matching one to Freja's grave.
My mom surprised me too, by making dinner for us and bringing it over. I know that her and I haven't often seen eye-to-eye in the last two years, but she has been very kind to me lately. She's been coming over to watch Boo while I've gone to my bereavement support group over the past month, and she has opened up quite a bit to me and has acknowledged my loss and how it has turned my life upside down. Maybe she's just coming to terms with the fact that the 'old me' is gone... and that she has no other choice but to embrace her 'new' daughter. There in no sense in trying to change me. A loss like this just doesn't go away. It can never go away. You just have to try to twist and turn your way through life while carrying this heaviness with you for the rest of your life. Some days I find that I have more energy to carry this load, while other days (the ones I fear and dread,) I feel weak and struggle to take another step....
But here I am.
Two years later.
I'm still here. Still twisting and turning through life, trying to figure out how to live each day with her absence.
I am exhausted.
We are in the middle of baking a cake for tomorrow. I got DP on board with me and we are making a star shaped cake... One which hopefully will resemble her ice candle that we took to her grave on Christmas.
It has been such a busy day. Running here and there, picking up necessities for our 'party' tomorrow, doing crafts with the kids for their sister. Boo wanted to go visit Freja today and it was a beautiful day outside so we went and spent a little while with her. It warms my heart when my little girl requests to go visit her sister. I love to watch her love her sister in her own unique way.
I will ice her cake in the morning... I don't think I have the energy to get that done tonight.
So, ready or not... Here comes the day I've been bracing myself for....
Still.....
None of my family has mentioned her name.
I am so mad I could spit.
I am so disappointed.
Does everyone just pretend that she never existed?
I don't know how I am going to face this alone.
I am so broken and defeated.
Dear March 25th, please be gentle with me. I'm feeling very thin-skinned as the days march on towards me. Like so many things in the past two years, there is nothing I can do, but face you head-on. Just another reality that there is in fact very little I have control over in life.
I'm getting so choked up with thoughts that no one will remember her birthday. Or, that they might remember, but not say anything. Why is it so hard for people who haven't lost a child to understand that it brightens my universe to simply mention her name once in a while?
There's an elephant in the room....
.... And her name is Freja.
................
I sit in silence, listening to conversations going on around me about trivial things, and I'm unable to focus on anything but her. I sit back and zone out, staring off into space at the floor in front of me.
I am so alone.
I feel as if I am a deserted island - cold, uninhabited, and misunderstood. Even in a room full of people, it is amazing to realize how lonely I can be with all of the thoughts that are mine and mine alone.
The lonliness builds into resentment with time. The feeling of being abandoned by my own family consumes me. People sometimes say they care, but their actions (or lack there of,) speak louder than words. I am stuck in this aweful trap, this cycle which makes my mind spin with thoughts and my stomach churn...
Alone....
..... That March should come in with such extreme, volatile weather.
The wind is whipping snow around like I've never seen before. I can hear it howling through the house. It sounds like nature is screaming.... Eerie....
I am feeling very much the same. Funny how my mood often mirrors the weather, when I stop to notice. I have been dreading this day coming - March 1st. I know there is no escaping the next weeks, which will surely fly by and be then be gone forever, just as the days she lived... Such a whirlwind of thoughts and emotion within me as I venture into this time of year which holds so many memories dear to me.
As far as I'm concerned, it could stay winter forever. I've never been a fan of our cold northern winters, but it sure beats spring.
I feel like the only person in the world who dreads spring as much as I do. Spring to me no longer brings feelings of rebirth, and excitement.... Rather, spring reminds me of death, despair, and the most painful kind of pain someone could ever experience. Spring reminds me of our treks back and forth from the Ronald McDonald House to spend our days with our daughter as she lived on borrowed time. The way the sun shines in through the window, the feeling of the warm spring sun shining on my face, she smells of the earth thawing, and the sights of icicles melting and puddles forming nearly brings me to my knees. Spring reminds me of slopping through a cemetary full of water to pick the 'perfect' spot to bury our baby.
Perfect spot to bury our baby?!?
Those words resonate through my head like a freight train without brakes thundering towards me.
And then comes Easter. The last holiday I can remember being excited for before Freja's birth. I remember going to the store just a couple of weeks before her birth, to pick up things for the girls' baskets. I wanted to be prepared, because I was sure I would go into labor early since I was measuring so much further ahead.
Prepared....Prepared... Prepared for what? I never, ever would've thought that what I was actually preparing for was the death of the baby I was carrying. As I picked out chocolates and trinkets and coloring supplies for my girls' Easter baskets, I envisioned all of us at home, happy and healthy. I envisioned the girls hunting for eggs and playing around my feet as I nursed a newborn.
I never, ever could've pictured that newborn taking her last breath on Good Friday. That we'd be chosing a spot to bury her on Easter Sunday (which also happened to be my birthday... Such a cruel irony....)
Going into stores right now is torture. Seeing all the Easter stuff out makes it so much more real that I am facing "That time" once again. I can feel it creeping up on me again... The immense sadness... The reflectiveness.. And even the yearning to go back to those days that she lived nearly two years ago. As painful as it was to face the reality that had been slapped down in front of us during those fifteen days of her life, I still wish I could go back there and savour her just one more time. Even with the shock of such a devastating diagnosis, the pain of having her alive and in my arms was never nearly as bad as the pain of having to live without her.
Oh now feel it comin' back again
Like a rollin' thunder chasing the wind
Forces pullin' from the center of the earth again
I can feel it
- Live "Lightning Crashes"
Today Freja would've been turning twenty two months old. Unbelievable to think that in two short months, I would have a two year old. It doesn't seem like it was that long ago that she was born. I guess this is just how it will be forever. I'll always hold on tight to those days in 2009 and the years will keep on rolling by.
I've been thinking a lot lately about the way I see Freja. Like when I picture her being here with us, there are always two ways I can picture her: As a healthy child without a debilitating chromosomal disorder, and as a child living with the challenges which Trisomy 18 would bring.
I tend to lean more towards picturing her as the child living with Trisomy 18. After all, that's who she was. If she hadn't been born with the extra chromosome, she wouldn't have been who she was. And I wouldn't change a thing about who she was - except that she would've been able to live.
I wish with every ounce of me that she would've been able to live.
I don't care how many challenges we would have had to face. None of it could be nearly as challenging as having to live without her. I've never been afraid of having a child with special needs. But I've always feared losing one.
That being said, of course I also envision what it would be like for Freja to be here, healthy and able to run around with her big sisters and love on her baby brother. I know that with her diagnosis of Trisomy 18, she never would've been running around though. Her mobility would've been very limited, and she would have had a feeding tube and likely other equipment as well.
I try to picture what it would be like to round up all four of my children and take them to the park for the afternoon. I try to picture what it would be like to pack up everything that we would need for an entire afternoon for a child with Freja's needs. I've never even done it, but I ache to do it so much that I've even fantasized about adopting a child with needs similar to hers so I can have even just a tiny taste of what life might've been like had she lived. I know that we will ever do this though. I think my reasons are too selfish, and of course there is always the fact that I cannot replace my daughter.
I would walk to the end of the earth if it meant my little girl could come home with us and live with us forever. I would spend every second of my existance tending to her needs if it meant I could sustain her life without suffering.
One memory that will always haunt me is the conversation we had with the Geneticist on the day that Freja's diagnosis was confirmed. He rattled off bunch of dire statistics about Trisomy 18, and then told me not to read too much on the internet. Of course, I didn't have access to the internet while we were in the hospital anyway, so I couldn't look much up. Then he went on to say that he knew of one child who had survived several years with T-18, but all the child could do was lay there and smile occasionally. I'll never forget the split-second glimmer of hope I had at that moment. To hear that this child could smile! I remember saying, "I'll take that!" And the geneticist seemed so shocked and quickly tried to extinguish any positivity that I had. I often wonder how he really felt about my child's life. Did he see her life as worthy of saving? Was she just a statistic to him? I bet he doesn't loose sleep every night thinking about her being in that grave. I know deep down that I can't be angry with him - or with anyone because of what has happened. I know that everyone was just doing their jobs and providing us with whatever they happen to know about the latest statistics and research regarding this condition. But, there is always that wonder about what would've happened if we had been steered in a slightly different direction.
I've been meaning to write since just after Christmas, but all three of my (earthly) kids and myself have been horribly sick with the flu. It started just a couple of days before Christmas and has lingered until recently. It was really disappointing, since it was Soren's first Christmas and he just layed in my arms on Christmas Eve, limp and whimpering. And of course we had to make the 'rounds.' First the stop at my mom and dad's house, and later a trip to MIL's to spend time with DP's family. On our way to MIL's house, we stopped at the cemetary and lit a candle for Freja in this beautiful star shaped ice mold.
On the drive home we passed the cemetary again, almost four hours after we lit her candle, and noticed that it was still burning. It was quite a sight to see - the flickering glow of candlelight in the pitch black dead of winter. There was no other movement within the night, but our daughter continued to dance around letting us know she was with us. We lit her candle again on Christmas Day just before we went to have supper at my parents' house.
And once again, Christmas/New Years was such a rollercoaster of emotions. First, only a few days before Christmas, I had a major meltdown. I felt the weight of the world on my shoulders and was very overwhelmed with the reality of having to face every day of the rest of my life without her. It is all too much to handle sometimes. Forever is such a long, long time... And although I like to remain hopeful that I will somehow be reunited with her when I cross over to the other side, I still struggle with finding comfort in that thought. It is such a final, guaranteed fact that my life here on earth will forever be without her physical being. It's hard for me to find comfort in the speculations of what comes after life here on earth. I struggle with this daily. I mean, I know there is something. Life simply cannot end, can it? Death is so mysterious to me. It always has been, and I've been forced to think about it more than anyone should ever have to, in these past 21 months. But I find myself running in circles... Not ever coming up with any definate answers, and there are times when it overwhelms me immensely.
I am thankful for my gift from Freja; Her baby brother who (despite being sick and miserable,) brought many smiles to my face this Christmas. Many much needed smiles. I have to make it more of a habit to stop and take a deep breath sometimes, and count my blessings. I am so thankful that he is here, alive and healthy. It is just so easy for me to get caught up in the sadness of losing Freja and it becomes almost impossible to see beyond the grief. A while ago, I discovered that there is a bereavement support group starting in just a couple of weeks in my town. I so badly want to sign up and see if there is something there that can help me, but I've been too much of a chicken to call and inquire. I really want to do it, but then I start second guessing myself and making up excuses as to why I shouldn't. I'm really going to try to call this week. I need to do this for myself, and my family. I know I will never fully heal, but I do realize that I am not being as good a mother as I want to be to my kids. This is all so difficult, trying to be a complete, well rounded person when a huge part of you is missing.
