127 - pale blue dot (comment)

Tomorrow is Nina's birthday and deathday, hatching and dispatching if you will. She would have been 4. I don't feel sorry for her. I'm relieved she got spared the agony which would have been her life on earth with trisomy 13. I like to believe that, according to my "faith", she is a happy angel somewhere with wings and a whole body. I like to believe we will be re-united oneday. But my perception of faith has changed for ever. In four years I haven't decided what to make of it. Yet.

I sometimes feel sorry for myself, but most of all I feel sorry for the people around me who still miss having a little sister or granddaughter around. I produced 3 healthy, beautiful, intelligent sons - that should be enough. But its not.

130a - sick over it

I'm sorry about your Gabbie, and you're right, it is sickening to think about...I wish none of us had to do this! My Grace was born at 21 weeks and she was alive for a short while...while we were holding her, we had to watch her struggle to breathe becuase her little lungs weren't developed enough and we and the doctors were helpless to do anything. In my nightmares, I imagine that it felt like piercing pain to her tiny, frail body and it makes my heart ache...

On my good days I try to hope that God/whatever higher power/the universe would not be so cruel as to cause our sweet babies pain and that their little spirits just floated to heaven or the universe or whatever happens (can you tell I'm struggling with this to?) It's all just so unfair. What I do know for certain is that we all would have done ANYTHING to make things different for our babies and that we did not choose any of this. I hope that our babies somehow know that. Wishing you as much peace as you can have.

131 - relaxation

Well, I definitely agree with everyone else, telling me to relax at this point is pretty much pointless and rude. I think people think it makes it better that our son had a horrible birth defect, like ohhhh, it was for the best and what are the chances of that happening again? Well, stupid person, I guess it's not that high but it has completely opened our eyes to the fact that not all babies come home and that's a little stressful. So f*** off.

This is our first month ttc, and it's only been two since we lost our son, so I am not a total stressball about conceiving yet (although really I guess I am, I want so badly to get back to that place). We have never had a hard time getting pregnant but things change of course and after every loss I worry that this will be the time it takes forever. And of course since I have now had one child with a NTD, the chances of having another goes up, so I worry about that. I am taking a bajillion mcgs of folic acid to help decrease those chances but who knows if that actually works.

As far as trying to calm myself down....I just concentrate on the fact that this happened once perfectly for us and hopefully it can happen again. I try to keep my body as healthy as possible and try to convince myself that will help. I read silly magazines and old books from my childhood (like Anne of Green Gables, my current fave, haha). I hang out with the hubs or walk the dogs. I remind myself that God is good, He has a plan and everything will fall into place as it should.

Not that any of it really works that well, but it helps.

134a - oh sister where art thou

135 - dylan's story

Oh, yes,yes. Everything you said. When we found out that AdiaRose had trisomy 13 I was relieved to have a definative answer as to why she died, because I was so sure it was all my fault. My next feeling was one of great protectiveness towards her, for exactly the reasons you described. I think my exact words to my darling husband were; "If anybody says to me that it's better this way I will KICK them. Really hard. I am so sick of neurotypical people treating people with disabilities like they are less than, like their lives have less value. She is not a bullet to be dodged, she is our beloved daughter and she is perfect the way God made her."

I don't know if you have read any of William Stillmans books about autism, but he talks about whole souls in a broken body. I really feel like trisomy 13 was just the mechanism of her bodily death, because when I looked at her I felt I was in the presence of a soul that was very old, and deep, and far, far beyond me.Like she never meant to stay. In looking back at all of the events leading up to her birth I can see that she stayed off the radar, and stayed with us for as long as she possibly could. We were taken care of in ways we didn't understand then, but which make perfect sense in light of her death.And iIf they had tried to save her by delivering her earlier, she would have died sooner. And she brought us such joy, such love.

She is deeply missed, and mourned. We wish she were here. I know it is selfish, and doesn't take into account how she might have suffered, but if in some alternate reality she could somehow be here, I would give so much to hold her and love her and take care of her.

I guess towards educating the ignorant, I would point out that any day, in many, many ways, any nuerotypical person can suddenly become a person who is very disabled. I think most people would want their child to live, and would take care of them and do any thing they could for them, because they love them and don't want to live without them. Why should it be any different for Dylan or AdiaRose?

Thank you for your post, Joanna. With lots of love, Jen

137 - winter. discontent

I had no idea sites like this one existed. Online communities like this existed. Until this week. It's like a secret club for wounded hearts. My beautiful daughter, Elodie, died 25 days ago. She was full-term (39 weeks) and all of a sudden no heartbeat. She died from a knot in the cord. I saw it clear as day when she came out. I am still in shock and haven't returned to work yet. Just numb. At the same time crazy, crazy anxious to try to get pregnant again as soon as our six week waiting period is up. Is this normal? Did anyone feel the same way? I am obsessed with the idea, even researching Dr's that specialize in post stillbirth pregnancies. Thanksgiving was hard and Christmas will be harder. But I have to keep moving. I have a 3 1/2 year old girl who thinks Christmas is the most magical time of year and that Santa is like a god. The show must go on for her. I can't get in the way of Christmas happening for her. It is already unfair that she lost her sister (or really the promise of a new baby sister as she never even got a chance to hold or play with her like I had been promising for months).

How do you really take care of yourself after this happens? How do things ever return to seemingly "normal"?

I know I'll be okay. I have a husband, friends, family, church, co-workers that love me. I trust in God and that there is a place called heaven. And that Elodie is there now with Jesus.

But I don't think I will be "normal" ever again. Let alone figure out how to take care of myself.

139a - tempting fate (comment)

LOVE this and relate so fully and completely to having your bubble "burst". I never thought I was naive. I had a miscarriage and saw tragedy in my life. But I still NEVER in a million years thought that "God" would suddenly and randomly take ONE of my twins a week before my induction date. I never entertained that idea, not in a million years. I felt protected somehow. Maybe it was because I was past all the danger zones and risks I had been warned about, who knows. What a kick in the gut.
As far as quirks? I have none. I don't feel safe and will never feel protected ever again. This world makes absolutely no rhyme or reason to me and never will. But, like you, when I do feel happy, I feel it fiercely, aggressively, as you said - defiantly.
Perfect.

140 - food for thought (comment)

This really rang a bell with me. I recently sat down and blogged about this very thing - the "unexpected" losses that came with losing my twin boys after they were born. I'm My blog post was rather long, so I won't copy the whole thing here - but here are some highlights on each point:

Belief system. To say that my belief system as a whole was rocked to its core would not be an understatement. Prior to this, I used to say (and really believed) that things happen for a reason. It was a way to explain disappointments and remain focused on something good to come. It worked during the loss of my grandparents, through my miscarriage and failed fertility treatments, etc. And at the risk of offending, I will say the whole concept of “God’s plan”, which is akin to “things happen for a reason” no longer makes sense to me.

Confidence. I had no idea that with grief, I would somehow lose my confidence, my sense of resourcefulness that regardless of what happens, I will somehow land on my feet and figure out a way to survive. That lack of confidence spread to so many other areas of my life – confidence with friends, relationships, business, etc. It all took a big hit.

Hope. Well, it shouldn’t have been a surprise that the day Trace died (just days after we lost Quinn), pretty much all of the last threads of a sense of hope died too. I didn’t feel like it was worth it to hope for anything, because the result would be more dashed dreams or disappointments.

Relationships. Of course I never anticipated the impact grief would have on my relationships. Now, here’s the surprise – with some friends, it strengthened our relationship in a way that nothing else could. With some, it established new relationships that otherwise would likely never have been made. But the sad part is that there are a few relationships – some very close, some more casual, that will be forever damaged by this experience.

Fear. Perhaps this is one of the worst demons that arrived with my grief. With a lack of confidence and hope, fear is quick to march in and take over the show.

I will say that the passage of time does make everything easier. The loss will never be okay – I will never be my old self. But I will survive, and my life will go on – hopefully with a little confidence, a dash of hope, a little less fear, and relationships that will support me through whatever ups and downs life will bring my way.

142 - The Meaning of a Life (comment)

I'd be in a world of fury and anger if I believed we'd lost Natan because I was supposed to learn or do something differently from it, because I needed it, or God thought I could handle it. The only reasons I look for from it are physical--as someone whose preterm labor still cannot be explained, the only thing I still want to know about why is what happened medically. For our sake, it no longer matters, but I wish that at the very least Natan's death could have yielded knowledge to prevent it from happening to others--and maybe it did. Maybe Samuel is here and this new babe will be here because we and the doctors became vigilant. But that's not a reason or a blessing. It's just a new dam built to preserve the new world after a flood destroyed the old.

And I still wish there were something more concrete--some new "aha!" about unexplained preterm birth that could have come from it, and that doctors could take forward from it. I suppose our story and experiences did add to the cumulative experience and knowledge of the young doctors/residents/med students who worked with the older ones at our teaching hospital, and that's something. That's a reason I always, always say yes when asked if a med student can observe. But again, that's not a reason to explain the past, just a reason to keep moving forward.

144a - correspondence (comment)

Oh, yes. The letters.

I wrote lots in my head and never sent them. However, I also wrote some on paper/email and did send them.

I sent a letter to my siblings and parents and told them exactly what I thought of their behaviour following the deaths of our three children. About how incredibly selfish they were (and continue to be). None of them ever responded to the letter. What selfish pigs they were and are.

I sent an email to several "friends" who continually spammed me with their annual newsletters which (of course) were all about their children. I haven't heard from them since.

One friend in particular sent a newsletter, and mentioned how she and her husband were grieving about the loss of a good friend. She continued by saying how the joy of her two young children were helping her cope with the grief and the loss of the friend. UNBELIEVABLE. I responded with sharp words, and haven't heard from her since.

I received an email asking how I was on my daughter's (still)birthday one year. I responded to the email by saying that it was my daughter's (still)birthday. I haven't heard from the friend since. That was two years ago.

I remember having lunch with two friends a month or so after Freyja died. One of my friends said that her death was probably for the best. I was so shocked I didn't know how to respond. That was nearly five years ago, and I haven't seen them or heard from them since. We've had two other children die, but not heard from them.

I remember christian friends and family bringing up God's plan or us not understanding his purpose. I now have no conversations at all with any christians about anything. If the topic is brought up, my husband and I leave.

We've lost many people who we thought were close friends. But, I guess you find out who your real friends are when your life literally falls apart.

145 - the language of loss (comment)

Another great, thought provoking and wonderfully written post - thank you Chris.

It's something that I know I'm growing with more confidence; talking to others about my loses, but guess that is down to my own growth and understanding of where I am now and what matters to me.

At first it would be them who took the initiative to talk to me, to ask me questions about Elizabeth and I was just overwhelmed that there were people out there who could stand to talk about the death of my children and not shy away from me as if it was contagious. I know that I'd bleed them for information, "how did they survive, how does it change, will I ever feel a happiness again, what do I do now?". I learnt a lot form those wonderful people coming forward to connect with me and feel a sense of normalcy in talking so openly with them.

Now I have some time and dare I say it, healing under my belt, I'm able to embrace these people when they come out from nowhere; to talk and listen, whether they be further along than me or just starting this path. I'm not actively seeking them out, but I'm not with holding anything at all from them - sugar coating is lost to me too.

I am very conscious of the wording I use with these people, just as I was sensitive to the words others used with me - I'll not talk of a God, Angels, fate, karma or a 'plan' of any sort - I have no understanding of them and so won't ballshit them. I always use names, get them talking as much as I find I'm doing and take my queues from them. I find it a great feeling for having shared my babies with others - a warm and fuzzy glow radiates from me and I hope that they find the same with sharing their loved one.

How do I speck to someone who is raw with grief? With not many words as you did Chris; listening to them, not trying to fix things no matter how practical you may think they are and just giving caring actions; a text to say I'm thinking of them, meals left on the door step, a note, a kind gesture.

147 - putting it into words

It's true as anything I know. Because being babylost means having to resolve the mindbending gap of alive and dead, and that work is never finished. Which somehow makes the doom both real and illusory, but never strictly bullshit. Out of all the reams of grief lit thrust my way, the only thing I read that really hit home was about "the myth of acceptance", which stated that acceptance is not an expected stage of losing your own offspring because it is too devastating. It is beyond the beyonds. Hence, The Ride.

My daughter Thisbe lived 41 hours and for the rest of my life, the ride will take me transcendentally high when I can somehow love her fully - no matter where she is - and furiously, dreadfully low into the bottomless hole of her absence. Both real, so real.

Someone suggested to me that experiencing "the worst" is proof that, having survived it, I really don't need to fear anything ever again. Nope, I can't take that bet (and had a lesser person said it to me...I might have tried to hurt them). Like you, I have to embrace what I can with all the courage I can scrape together at the moment, but the only thing that makes love and joy beautiful now is allowing myself to feel them while not letting myself forget the other side of the coin is merely facing away.

And I tell myself lots of things on the days I attempt to hold myself up, but today it's these:

1) Matter is neither created nor destroyed, and "that mystery [she] hast leapt across" separates us, but does not undo her existence. She's real. So my job as her mother is still to love her, love her anyway.

2) I should try to seek resilience rather than happiness (but I'm not there, not even trying yet). It just seems like the only answer to surviving the ride.

3) Nothing but Thisbe's loss has, or would have ever, illuminated the depth I now see in my husband and my son (we had one miscarriage before the latter came along, and I want to acknowledge that not having a living one to let the pressure off your grief and longing probably puts me on an altogther different ride, and I wish you and your wife the most golden luck in the world for future children who will outlive you in a robust blaze of happiness). This is something I can do because of Thisbe's love: quit rhapsodizing - somewhat hypocritically - about her, and love my living family way,way better than I have.

4) I would never ever trivialize Thisbe's loss to a purpose, a "here's why" (I am not a believer in plans and certainly never god's plan). Sometimes aching shuts me down and sometimes it makes me act and I try to welcome both as states in which I can be better at keeping Thisbe a part of me for life.

5) I always feel better when I shower.

It's been 9 weeks since Thisbe died, I have to keep reminding myself of this, because I am usually certain it's been 200 years. I'm mentioning this now because a voice tells me to shut it, I'm probably still just in denial. Also, I tried to post this yesterday when there were just 3 comments, but I had pc trouble, so I apologize for posting it now without reading all of the comments first. I will come back to them when I am up to it.