Another pink line...I should be smiling, right?

Sigh.  Time.  It has a way of creeping by.  January 24th marked four years since Logan died, as well as reminding me that Rudy should've been celebrating his first birthday...and that the Muffin is growing up since she turned five and on that day we discovered her first loose tooth.  Yesterday I pulled that tooth, which was obscenely loose, out of her mouth.  Time.  It creeps by and we take a moment to look up and poof...so many moments and memories have passed by.

 

Logan.  I can't picture him at four.  I couldn't ever picture him as a baby either, but rather a two year old.  He will forever be two for me.  It makes me sad, not being able to even create who I think he would be.  But lately I haven't been able to feel much of anything other than ambivalence and fear.

 

Blame it on hormones.

 

After nine cycles, and on our last try, we became pregnant for the fourth time.  I'll be 12 weeks tomorrow.  I'm safe now, right?  [She scoffs]  I'll be honest, I have always struggled with ambivalence and maybe a touch of depression, during the first 5 months of pregnancy.  But lumping on the tragic circumstances of my past just amplifies it all the more.  Frankly, I'm terrified.  And no amount of ultrasounds and heartbeats and shallow reinforcement from "outsiders" can ease that for me.  I'm twelve weeks, second trimester, past the miscarriage prime...its been confirmed that its alive and in the uterus (bonus!) but then, so was Logan.  In fact Logan was perfect, until he just wasn't, all of a sudden...at 24 weeks.  And I tell you it irks me to no end the ignorance that is spewed at me!!  "God has come through for you!" (Well, maybe, guess we'll see).  "Surely it won't happen again!" (Why?  Because two flukes are enough?).  "Have faith" (Because my lack of it killed my other two?).  "Think happy thoughts!" (Because they are like a magic wand, and poof!?)  And it goes on.  Sadly it comes from those closest to me, the ones who HAVE to believe it'll all end happily.  I dunno.  In the end I feel like they think my concerns and fears are silly and unwarranted.  And really that just leaves me feeling alienated.  No one gets it.  And that should make me happy, right?  Because the only ones who get it have been there, and I certainly wouldn't wish this on anyone.  But really I just feel very alone, and freaking out with out anyone to seriously talk to about it.

 

I'm pregnant, so I should be happy, right?  I mean, that's what I thought was going to happen.  I thought I would be thrilled!  That's what everyone expects of me, right?  Its what I wanted.  Everything will be better, you'll be happier, get a happy ending (because "You deserve it!).   But I'm just scared, and reluctant.  I'm so much older now, so much time has gone by.  My daughter will be almost 5 years its senior, and I will be raising (hopefully) two only children.  The odds of this baby being born alive and healthy are pretty low.  No, I don't have any moments of happiness about this pregnancy.  That bliss has long passed me by.  I fear the worse, and the just as bad!  I fear a dead baby, a severely handicapped baby, a severely handicapped baby who will die a baby.  I fear what that will do to my daughter who is old enough to comprehend the horrors.  I fear what that will do to my husband who maintained all along that he did not think this was the right thing to do.  I fear what it'll do to my marriage.  Oh, and that's lumped in with all the other fears of motherhood.  What if the baby has colic?  What if I'm too old to do it again?  What if my daughter can't adjust?  SIDS.  Whooping cough.  Chocking.  Falling meteors (or is it meteorite?).  And all of this fear is suffocating.  Did I mention I've been sick twice, once with a fever for 4 days?!  Did I mention that I'm high risk for about four hundred other things.  Oh, and lets take into account my "advanced maternal age" now that I'm 35.  Every day I look in the mirror and ask myself what I was thinking.  In fact, the day I found out I immediately told my husband and then freaked out crying "what the hell did I just do?"  Because this was all me, and only me.

 

These past 12 weeks have been such a roller coaster.  Most of the time I've been waiting for the other shoe to fall.  Waiting to see if it stuck, waiting to see if it was ectopic, waiting to see if it was viable and now waiting to begin testing for Down Syndrome (since that's what Logan had).  We do that on Thursday.  And I love the ignorant people who like to try to reassure me that having a child with Down Syndrome can be a very rewarding experience.  Seriously?  First of all, who would want that for their child?  And secondly, the average person has no clue about what having DS entails.  How horribly painful it can be for a child.  If that child is ever even born, since 75% of them die before birth, most die before their 1st birthday.  A child who makes it past 5 is rare, and lucky.  Don't preach at me about having a child with Down Syndrome.  I know full well what it entails, down to every gory detail that I could find in print.  That rare door greeter or McDonald's employee you see out and about on occasion, they're the exception to the rule.  They're the mild cases.  No.  I fear DS as much as I fear another dead child (if not more).  Because for me, they are one in the same.

 

This is it for me.  My last hurrah.  At almost 36 (April) if this child dies, and if I wait the recommended year to grieve, and if I managed to talk my husband into it again (he'd more likely try to snuff me out), and if I managed to conceive quickly...I'd still be 38 before that baby would be born.  And after having my first DS baby at 31...well, I think the doctors would call me crazy for doing it again.  I know what my odds are of having another baby with DS.  They're not great.  I wouldn't risk it at 38.  So this means, living or not, this is my last child.  Which brings me full circle back to the issue of time.  It crept by while I was living and then weeping, and one day I woke up and realized I'd missed my opportunity.  But I still feel like I'm 19.  It was just the other day, I swear.

 

In the end, I realize, that if this baby makes it healthy and living, I'll think that all of this fear and worry was worth every penny of it.  I've had a living child, I know what is coming my way and how I felt when she was born.  I know that I'd do it all over again.  But I also know how wrong it can go, how unexpectedly and how quickly and how late in a pregnancy.  I know that there are thousands of things that can go wrong between now and August.  I know how fragile life is, and how it is not a guarantee no matter how much you pray and beg and hope and think happy thoughts.  Sometimes it just happens, and there's never a good reason for it.  So right now, I'm so deep in a fog that I can't see past the fear and anxiety.  I can't picture this baby any more than I could Logan or Rudy.

 

Have you experienced a subsequent pregnancy?  What was that like for you?

Is the price too much?

"Life is both pain and pleasure.  If this is the price you must pay for the hours you enjoy, is it too much?"  -Paolini (Eldest)

We are TTC...again.  In February my DH quietly, and with an overwhelming look of fear in his eyes, relented.  I won.  I guess.  If being granted the right to proceed into horrifying territory where monsters lurk, waiting to trample our hearts again, can be considered a win.

I thought I'd be happier.  I thought I knew what I wanted.  I thought I had it all figured out and under control.  You see though, now that the reigns have been passed to me, I am frozen with fear.  How much of a price am I willing to pay to find that elusive happy place?  How much am I willing to sacrifice, to forgo?  Who am I willing to sacrifice?  Myself?  Absolutely.  Not a question.  I'd do it again and again and again.  Been there, done that, survived...twice, if you can consider what I've done as surviving...I didn't off myself, so...  I know that in the end, if I get a healthy, living baby, its all worth it.  But what if a hundred die and not one ever lives again?  What if the child is so ill that I find myself wishing that the baby would have died.  [GASP!!]  But in reality I know that my two dead babies never suffered, never felt pain.  Is not my wish for their life, even with horrific handicaps and deformations, pure selfishness?  I struggle with this notion.  But, I have learned to disconnect myself from the reality of the horrors.  My husband?  Not so much.  Then there is the Muffin to consider now.  How will by daughter, who is 4 1/2, handle another dead sibling?  She knows of the other two.  It affects her more than I like to admit.  She mourns for them, cries for them, misses them.  She knows they should be here, and she knows she should have living siblings to fight with and to play with.  She knows of the still birth of another very close friend's child.  She was 3 1/2 when he died, she cried.  I believe she understood.  Am I willing to put her through another trauma because maybe, just maybe, this one will work out?

Most days I feel like a selfish bitch.

This past cycle was our first try.  Immediately I got sick.  I had a fever for 3 days.  I was freaked!  A week later my daughter breaks out in this weird rash, Molluscum is going around.  It can last for 4 years.  I freaked again!  Freaked so bad that I had my baby biopsied.  The spots have faded, Molluscum doesn't do that.  The derm is almost certain it was an allergic response.  Almost.  So, I'm still freaked.  Yesterday I started my cycle, 3 negative pregnancy tests later and one day early.  And get this, I was relieved!  Relieved!!  What?!

And I wonder.  Do I really want another baby, or do I just want control over the decision?  Was that the bigger issue, that I didn't have control over whether there would be another baby or not?  Am I ready for sleepless nights, screaming, diapers and toddlerhood all over again?  With the Muffin knocking on the door of five, we are finally seeing the light at the end of the tunnel.  The old argument that she needs a playmate is invalid at this point, its been too long, the gap too wide.  They will not be playmates.  But I stand firm that people need siblings  (I have 6).  They need someone to go complain to about their parents, and who better to understand than a sibling?  They need someone they can turn to when they don't feel like they can turn to friends or parents.  They need someone to have when we are dead and gone.  And yet, some siblings hate each other.  Some siblings rarely speak and are like strangers passing bye.  Some siblings die earlier than their parents.  My argument is losing its water...

This is it.  My husband said he can't do it again after this.  Frankly, I wouldn't put him through it a 4th time anyhow.  So, if we don't naturally conceive (and soon), or if another baby dies, I'm done.  We're done.  My DH seems to be in a constant state of panic.  Making babies isn't the innocent fun it used to be.  Fear lays there in the bed next to you, stares at you from the corner of the room.  Anxiety screaming in your ear.  Its a wonder either of us can even perform.  Sexy, eh?  Romantic, eh?  No.  Its not.  Its terrifying when you take that leap of faith.  Its terrifying when you put yourself out there on the limb again, waiting to be knocked off of it again.  Waiting for what surely must be the inevitable.  Outsiders don't get that.  "Try again, surely it won't happen again."  Surely.  But we know, don't we?  How many of us have lost multiple times?  Too many to count.  But the outsiders like their ignorance, and why shouldn't they?  But its huge, and its scary.  And each day of those two weeks are spent in a constant state of anxiety.  Am I?  Could this be it?  Please God, let me keep this one!  The turmoil and anxiety that engulfs us during those two weeks of not knowing is insane.  Then the huge let down when we are not.  The weird twisted and conflicting emotions if we are.  Yeah.  Its scary.  You see, even though this is our first official cycle TTC, there have been a few other times...  Times when I prayed one way and he prayed another.  Times when I tried to hide the anger and frustration and disappointment while he tried to hide his relief.  How are we a comfort to each other?  Luckily I am married to a patient, understanding man.  Luckily he can put aside his fears and comfort me in my disappointment.  Because even though he desperately does not want to go through this again, he wants me to have a shot at happiness, or at least contentment.

Though, we all know, one living baby just does not replace the dead one.  If only it were that easy.

How high of a price are you willing to pay?  How many dead babies can you suffer?  In the end, is all of the anxiety worth it?  Have you had another child post dead baby?  What did you do if you and your spouse were on separate pages (or even books)?

Because really, how much is there left to say?

It's been about four months or so since my last post here. I guess after a while I've started to feel like I'm beating a dead horse. I mean, how much is there really left to say? Logan's second anniversary came and went on January 24th, mostly in silence. Not too many people even knew, or remembered, or at least mentioned it. We didn't commemorate the day or anything. I didn't cry. I mean, not that I wasn't sad, but I seemed to feel all dried up that day. Empty. Defeated. Deflated. I made a real point to try and be genuinely happy and celebratory for my daughter's 3rd birthday (a quick 3 days after Logan's anniversary), and I think I did a good job. These days my heartache is more of a shadow. Its always there, in the background. Easily found, most times ignored. But regardless of how I appear to those around me, and even how I seem to myself at times, I am not over it. I am not okay with it. I have not dealt with it, nor have I found peace in it. I guess I just feel helpless, or hopeless about ever finding the big meaning of it all. Most of the time I try to convince myself that maybe there just isn't a bigger meaning to any of it. Like so many other horrific things in life, Logan's death was just random...just like his life. No more a punishment or judgement from God than is child abduction or molestation. Horrible things happen all the time. But try as I may to be glad that we haven't had to experience other horrible things, I don't find comfort in any of it. I don't know that I'm still mad at God these days. I guess if anything I just feel abandoned by him. But then, sometimes I just feel nothing. It just happened. Its part of life. GOD didn't DO this to me. It wasn't DONE TO ME. It just was what it was. Down Syndrome happens to lots of people. Most of those babies die before birth. We're just among those numbers. But I can't get past the giant WHY? Why us? Why Logan? Why did we have to get pregnant THAT month? Its really just a big circle of whys. Questions I will never have the answers to. And even if I did, would it matter? Would any reason why be enough for me to nod in agreement, to believe it was the right decision, the only option, the best choice? I doubt it. I doubt I would ever feel ok with the reason why. I wish I could figure out a way to let that go, the question why. It eats at me.

I've often talked about how Logan's death has changed so many facets of our lives. The big one lately is the subject of another baby. I wish I wasn't so scared to have another child. I mean after I manage to get past the issues in the bedroom, then I fear having another child with DS. Then I fear the death of that child, and I fear the life of that child. Having a handicapped child certainly would change life around here, and I would have a lot of guilt. I know that lots of people who have handicapped children will tell everyone what a blessing that child is, and though I don't doubt it I fear the affect it would have on the healthy living child that I currently have. A life that would forever be altered because I was too selfish to be happy with what I had. Money that would have gone towards a better life for her (college and what not) would be used on surgeries and special care for a child that I forced into our lives. And say that child is healthy, and lives...will I ruin that child? I fear I may smother my children. I fear that my third child will forever live in Logan's shadow. I fear that my fear of anything bad coming to my children will haunt me and turn me into some uncontrollable psychopath! I fear getting pregnant, and I fear not getting pregnant. I fear that not giving my daughter a sibling will leave her lonely and "missing" a big part of life. I fear that having another child will leave less of me for her. The whole thing just flat out terrifies me these days, and has become a constant nagging in my mind. I feel like there is no great outcome to be had. Having another child will not alleviate the sadness of Logan, it may only confuse it, if not exacerbate it. I am confused, and I am scared.

Fear is what pretty much defines me these days. Fear that my living child will die. Fear that I may ruin her. Fear that I might let down my husband in my efforts to find some proverbial missing link. A link that can not ever be found. Fear that my God has forsaken me, or that I am too far gone to ever find my way back in my faith and beliefs. Fear that I will never be able to forgive God for the enormous heartache that we have. Fear that I will not be able to get pregnant, or to carry to term, or to produce a healthy baby. And oddly enough lately I have taken on this huge fear of death. I lay awake at night, I obsess about it while I'm driving. I think about my death on a regular basis and how it would affect my dh or my daughter. What will happen to me when I die. What happens if I die soon. Fear that any day could be my last. Some horrible accident or disease that steals me away from my daughter, my heartbroken husband.

Fear.

Perhaps its another phase of grief. I will hope this is the case.

Here it comes...

So, here it comes. Today, a year ago, our horror began. Today is the day they told us there was something wrong. By the 23rd we knew he had died, the 24th he was stillborn.

Today I coped. Today I thought a lot about him, but it didn't pull me under. I thought a lot about what happened and the way I felt, but the day progressed in a "normal" fashion. I didn't cry, yet.

Last night...well... Here's the thing. I realized last night, after a small rift with my dh, that I feel like I have no control over much in my life. And that really bothered me. It came out wrong, and I took it out on my dh and was in a desperate search to reason that my thoughts were normal "wife" thoughts. But they quickly turned into Logan thoughts. And I realized that's what the issue really was about. Oh, not that I didn't really want what I was asking my dh for, but that the reason I got so angry (and later so sad) was really just because I struggle with control more so this past year than I used to. There have been so many things in the past year that have happened to me, that I had no control over, that it has really left a scar, or more realistically an open wound. Not that there haven't always been elements of fear of loss of control, and the actual inability to control everything around me (I once haunted myself in my sleep because I felt so out of control), and not that there won't always be that. No one can control everything around them all of the time. Other's free will is often involved (divorce, job loss), or circumstances beyond ones immediate control that make it impossible to control a situation. But after Logan died, it became very real, and very obvious to me that there is actually little in this life that one can control. I couldn't control what happened to Logan. I couldn't control the pain I felt from it. I couldn't control my husband and force him to have another baby right away, or move, or so many other things. I couldn't control the reaction of other people. I couldn't control my response to them (ok, this might be debatable). I couldn't control so many things that seemed so life altering, anymore than I could control the weather. Which has left me feeling so very insecure and vulnerable. Two feelings I despise. I miss the illusion of control I thought I once possessed. I miss the prospect of a new life in this home. I miss the dreams I had for Logan, the plans I made, the big sister I saw in Aubrey, the Mommy and Daddy I saw in us. I miss the family I framed in my head, the way it was going to be. And because of things I could not control, those dreams and hopes and plans are gone. I miss being able to relate to other women on a natural level with out them second guessing my words, thoughts or intents. I miss being able to think innocent thoughts about babies and being pregnant and frankly, sex, with out the constant sad reminder of what no longer is.

I miss the innocence and the comfortable naivety that used to be mine.

And I would gladly have given all of those up and so much more if I would have been able to have had a healthy Logan, or even, selfishly, one not so healthy Logan.

I miss him.

I miss you baby boy.

Hormones

So I had my OB/Gyn appt today to have a look at my hormones. She drew some blood and the results will be back in about 3 weeks. She says it sounds like they're off. I go in on Monday to have an ultrasound done on my ovaries to check for cysts (PCOS) which could be wrecking havoc on me too. She wants me on birth control for three months. Yazz. Sigh. BIG SIGH. I know we're not planning babies. I know. But what if?? What if he changes his mind and the BC keeps me from getting pregnant for a long time?? Not to mention all of my other issues with birth control, and I have a lot of them. But she swears that it'll help with the depression and all of the other "side effects" of grief and babyloss and the post partum kick in the rear we all get that messes up our hormones. I'm still debating. I don't want to live like this anymore. This depressed hormonal mess if I don't have too. If it's not natural. She says she doesn't think I have any more depression than I "should" and she also said it hasn't been nearly long enough. Apparently seven months isn't long enough to grieve a dead baby. I guess I'm glad a doctor said that. Makes me feel less abnormal. She also said that I could get chromosomal testing done on myself which would give them a better look at the likely hood of having another baby with chromosomal issues. I'm not sure I want that sort of info. And when I told her that we wouldn't do any testing once we conceived because we wouldn't terminate under any circumstance (which seemed to surprise her) she said that she wouldn't recommend extensive testing then. I like her. She was upbeat and funny. When I told her I thought I had excess body odor she said "I don't smell anything" and then she laughed and told me that was a hygiene issue, but she was joking then too and said its just part of getting older. The office is very clean and updated/modern looking, something I couldn't say for my last doctor. I like that too. Makes me feel like they're more up to date in all things, though I know that's a foolish way to feel.

She read Logan's autopsy report. She said that the report's final diagnosis to Logan's demise (since he didn't die from having Down Syndrome) was "etiology uncertain" (which means they are not certain of what caused his actual death). She said she doesn't understand why they wrote that. According to the report Logan's organs shut down. This is what can happen with children who have DS. Everything is retarded. He basically had an overall system failure. No one thing caused his death but a combination of several. SO they couldn't point and say that his heart failed, or that his brain failed, or whatever. It all failed. When I mentioned to her the odds about conceiving another child with DS she said that those were pessimistic odds and that she had never seen nor heard of anyone having two children with DS, but that she herself has had a few patients go on to have "healthy" children post DS. She mentioned a current patient of hers in her late 40's. Her first baby was born around 40 and had DS, her second child born years later was perfectly normal. She even seemed very eager for my DH and I to get back up on the horse and TTC again. That might be the D.O. uber-OB in her talking.

I cried. I wasn't sure if I would or not. I've been having a few ok days lately so I thought I'd be in the clear. Laughable. I was trying to tell her about my face twitching (my tick!) and I burst into tears. She said the twitching was stress (since it comes and goes). And when I told her that I was irritable and argumentative she said "don't you have the right to be so?". Did you hear that hunny??? I have the RIGHT to be a jerk!! LOL! Seriously though, I didn't want to be there. Thankfully there was only 1 pregnant chic I saw in passing. Which is good because if we'd have started talking and she'd have asked questions I don't know that I would have been able to refrain telling her that mine died. Which would have been cruel to her. Monday I go in to get an ultrasound done on my ovaries to make sure there are no cysts. I'm hoping being there with a few pregger chics (who I am sure will be there),the ever familiar ultrasound and the whole process won't ruin me.

The hubster and I and our little muffin are heading to Florence, KY for a few days starting tomorrow. Just a mini-vacation is all. A chance to get away and not just to family or friends houses. To actually GO somewhere. I'm excited. I know he's excited too. It should be a fun few days and I am hoping for the best. If nothing else, I'll appreciate the adventure and chance to get away from everyday ho-humness of life.

Days like THIS??

Momma said there'd be days like this??

No, my momma didn't tell me.

In fact, I was pretty clueless that there was this kind of pain in the world. Pain that doesn't really have a face. Pain that is so multifaceted that it inflicts itself upon me for seemingly random reasons. Why is it that some days (and this is one of those none hormonal ones, this is supposed to be my one week of peace) I feel the overwhelming urge to stuff Peanut M&M's into my mouth, just after I'd eaten lunch and am feeling rather full? And why is it that there are days that I become obsessed with getting something to drink (we're talking pop here!!) so much so that I actually get dressed (just enough not to have people stare) and go to 7-Eleven?? I've become a comfort eater/drinker. I gained 10lbs this month. TEN!! And get this, I'm trying to LOOSE weight. I don't recognize myself anymore, my brain. It's like I'm two different people. The person I was before Logan died, and the person I am now (who is trying to fake that she's still the old me!). I think I'm depressed. Seems obvious, almost expected. To be honest, I don't really know what real depression looks like. You know, when you're past the blues and you start looking for alternative methods to feel good. I cry for reasons I can't explain. I know, I know. I'm the mother to a dead baby. I should be depressed. I should cry. But at what point does it go too far? I'm too logical to kill myself. At least I'm with it that much. But getting out of bed (and it's getting later and later) is a chore like none other. And getting off the couch, well other that to do what is absolutely necessary (and frankly, the bare minimum), just seems pointless. I know I'm supposed to function, and I do what I have to, but I don't want to. I don't see the point anymore. And days when my daughter is not home...well...those days are pathetic. Makes me wonder who I'd be if she wasn't here to keep me from sliding all the way under. I have an appt. so don't freak out about me or anything. It's just one of those days. A day when I can't describe the hollow hole in my chest, days where I feel like I am literally suffocating, days when I am quite willing to curl up and drift away into oblivion. Days when the Vodka in my cabinet calls to me, and my brain argues not to go down that path. So I don't, most of the time.

I don't want to know anymore.

I don't want to know my son is dead. I don't want to know that I should have a two month old laying in that empty room. That the room should be painted blue and green with little fishies (like this one). I don't want to know that I should be stressed to the max and flipping out because I have two babies. I don't want to know this reality any more. I don't want to know this kind of heart break, this enormous amount of pain that I can't explain to anyone I know. I don't want to stand by helpless watching the pain drag my husband under. I don't want such a wonderful man to have to experience such sorrow, and to know he experiences it because he chose me. I don't want to wonder what to tell people. I don't want people remembering I was pregnant, and not being sure where the baby went. I don't want people to know. I don't want people to look at me like that. I don't want to look at myself like that. I don't want every intimate encounter I have with my husband to be laced with fear, and remorse, and longing, and memories, and sorrow, and hope for something we can't have back. I don't want to search for ways to fill the void. I don't want to long for a different life. I had/have a great life. I have an awesome husband that I don't deserve who is as perfect for me as I could have ever dreamed to hope for, and a daughter who is such sunshine and rainbows you'd wonder how anyone could find a teardrop with in a hundred miles of her. I don't want to hide my life away. I don't want to spend my free time in tears. I don't want this sorrow in my home anymore. I don't want to miss a child I never got to know. I can't mourn someone I never met. It's unreal. I don't know how to do it and it has worn me down and split my chest wide open. How am I to heal? How am I to get over, to move on from an enigma? I'm tired. I ache all over. I'm spent and I don't know how it is physically possible to still be crying after six horrible months.

I've thought about a shrink. I have, a lot. But I keep coming back to the same point...how can they help me if they can't fathom what I'm going through? How can they tell me if I'm normal, or appropriate if they haven't walked in these shoes? All they can do is pat me on the back, ask me stupid questions about how I feel when I already know how I feel, and then give me drugs. The drugs don't sound so bad. A pill? All I have to do is take a pill and then poof, the tears will go away? I'm in! But we all know it doesn't work that way, or we'd all have that pill!

My favorite movie is Eternal Sunshine of the Spotless Mind. It's a horribly tragic movie, or at least that's how I see it. The point of the movie, if you don't know, is that this man is so heartbroken over a girl that he goes in to have his memory of her erased. And the entire time they are going through the process of erasing her memory, his mind keeps trying to hide her, because though the pain is unbearable for him, in reality...in his subconscious, he doesn't really want to forget her. That's how I feel. I would give my right arm to not know what I know. To not feel the sorrow that is engulfing my heart. But really, in all of my blinding pain, I still want Logan. I still want to know he was there, even if for a little while. And though I would have given anything at all to have my son be born and grow up (there's that qualifier for you), Down Syndrome and all, I'll take this pain of knowing he was here, that I had a son...even if he died.

I'm just tired of knowing that he died. Tired seems like a weird word to use. Weary. Spent. Exhausted. Drained. Empty. I feel all used up.

Is this what it's like when a spouse dies? A parent? Do I have to go through this again? Does Logan's death hurt this bad because he was a baby? Or because he was my child? It makes me fearful for the future. I am affraid that I can not survive out-living my daughter. I can not imagine that I could survive out-living my husband. It makes me hope that my death is first, and that makes me sad, and scares me. I am a coward. I have seen that kind of darkness and I am afraid to touch it again. I don't care how that makes me look.

5 months

Five months have passed.

Seems impossible. Seems irrelevant too. It doesn't seem to matter how much time has passed since Logan died. I don't know why I bother counting the days, the weeks and now the months. I'm sure I'll count the years too. It doesn't seem to matter that any time at all has passed, because he is still dead. I'm not sure what I am counting to. Will I say at the ripe old age of 92 (should I be blessed/cursed enough to live that long) that my son should have been 60? That he should have been a parent himself? A grandfather even? That he should have lived a long and happy life? Will I, at 92, still see my son as the tiny, tiny baby who left me before he had a chance to live, and not the old man that he should have been?

At 92, will I still be the mother to a dead baby? Yea. I'll always be that I suppose.

I find myself settling down into this role (on most days). I find myself admitting that perhaps I am too old, and that I shouldn't have been having babies at 31. Science is still iffy on that, but I have the proof of what society constitutes a woman being too old to have a baby is. I have a baby with Down Syndrome. I have a baby who died because I was too old to give him a healthy egg to start out with. At 31 years old, I am an old woman. Go ahead and laugh. I know, it sounds ridiculous. But by all accounts our good eggs vs. bad eggs are what make us feel young vs. old right? Isn't that what we grow up hearing? Your eggs are too old, you shouldn't try. I just didn't realize that at 31 it was possible that I was too old. I mean, I guess you can be too old at 19, or even 16, or if your lucky not till your 45 or more aged. Eggs have an expiration date. Did you know that? Mine have expired. My chances are pretty good that I'll have more bad eggs. Apparently they don't all go at once. That's a nice perk. Now having a baby is a crap shoot. A 1 in 100 chance that my next egg will fail us too.

I wonder if my expiration date was posted somewhere...would he have chosen me anyhow? Would he have chosen this amount of anguish had he known before hand? Would he have chosen me regardless of his horrid future, his eternal pain over the loss of a son he was promised and then so cruelly told "psych!" to? Would I have wanted him to have chosen me anyhow?

I'm too young to feel so old.

Logan's Afghan

On Easter I was finally presentable enough to have my photo taken, even though I still managed to have my hair in a pony tail. Here is a picture of me with the afghan that Chandos over at The T21 Traveling Afghan Project made for me in memory of Logan. The Afghan is just perfect, and even smells good. I know, that's weird that I noticed it, but I did. I love the afghan. At the moment I have it placed with all of the other "memories" of Logan. Thank you again for this precious gift to our family.

An Afghan for Logan

I was recently contacted by a woman who found my blog through Facebook. She is the president for the International Mosaic Down Syndrome Association. She wrote this:

"In my role as president, I know many people throughout the world who do special things for parents of children with Down syndrome. One parent makes a very special afghan that travels throughout the world to go to families of children with Down syndrome. I told her about your blog and she would like to make you a special afghan for you to keep in honor of Logan."

The woman who made the afghan special for Logan, runs something called The T21 Traveling Afghan Project where they send around a special afghan to children with DS to enjoy for a while before it moves on to someone else. She has a blog that tracks that afghan. She posted about Logan and the very special afghan she made for us. You can read about it and see the afghan here. The afghan should arrive here any day. We are very excited.

I am increasingly amazed on a daily basis the comfort I receive from complete strangers. People who don't know me from Adam (or Eve) write the most profound and heart warming things to me. Words that do help, and do make a difference in some odd way. Complete strangers tap into my darkness better than people who know me in real life. It amazes me. It brings me great comfort. Who could have imagined that something so small (in the grand scheme of things) like an afghan, could bring me such happiness, such comfort. Aside from an early Christmas present from my MIL, this afghan is the first thing meant for Logan that I have received from anyone. Validation that he was real. Validation that my son existed. Validation that I miss him and need him and something to grasp. Something real. It's like Barbs's Tiny Tags, or Carly's Names in the Sand. We all want something tangible, something physical that says "This was for my child! This makes them real!" I am overwhelmed by this seemingly small gesture. I will cherish this afghan with all of my heart, and for all of my days. People will know, that afghan was for my son Logan. Thank you. Thank all of you strangers that have kept me from going under. You've all meant and done more for me than you can possibly imagine.

What are your plans for Logan's remains?

Ter asked me this question, so I thought I would publicly answer it.

My husband and I thought it was very important to have an autopsy on Logan since there was no warning that there was a problem until he was already dead. We were advised by the Diagnostician to have Logan sent to University of Michigan to have a complete autopsy done sine the one the hospital does is on the brain, and not the whole body. But, to do this we had to just accept the terms laid down by UofM. If we wanted UofM to do the autopsy we would not get his body back. He would be cremated in a mass cremation with other babies, and his ashes would be placed in a vault with other babies in a plot that UofM had commissioned at a memorial garden nearby. At the time nothing else mattered but to know why he died. We needed to know if it was something that could or would show up in my daughter. If it was likely to happen to the next baby. If it was genetic, hereditary, cultural. We both were desperate for answers. Though I am horribly bothered by the fact that my son will be cremated (the whole burning thing wrecks havoc on my mind) and I am bothered that I don't have control over where he is or will be. I try to find peace in knowing that he is with other babies in the same situation. I have to be honest in admitting that it does bother me. But I really felt like we needed to know, and never in my wildest dreams did I think it would be something as "simple" as Down Syndrome (which was discovered through the amnio the day I gave birth). Though, we were told that Logan did not die from DS itself but rather a complication due to DS, and most likely a heart condition. We do still want to know every possible fact. I don't regret my decision. I just wish I could have had it both ways, the autopsy and his body. I would have liked to have chosen his resting place. We were told that it would be several months before the autopsy results would be ready, so I assume he is still at UofM (2 months later). Either way though, Logan would have been cremated if he would have had an autopsy. And we needed an autopsy. But, the hospital would have at least given his body back...though with out as thorough of an autopsy. We will be attending a memorial service put on by UofM later this year.

"The first time anyhow." and "What are the odds?"

My dad finally came to meet my daughter, thirteen months and one dead little brother into her life. Yes, I’m bitter, resentful and full of hatred. Upon seeing his granddaughter for the first time (did I mention she was thirteen months old?) he said “Well kids, you’ve done good!” and my first reaction and immediate response was “The first time anyhow”. Why? Why is it that I say those things? Why is it that I try so very hard to find the humor in my son’s death? Obviously there’s nothing funny about it at all. Maybe I like the look of horror I usually get. I’ve always been one for reactions. Maybe I want people to feel the horror that I carry around. Maybe I’m trying to convince myself that it wasn’t as big of a deal as it really was that I don’t hurt as much as I really do. I hate bad stuff. I have never been one to know what to feel or say or do in the face of a tragedy. I shut down, I ignore, I bury and bottle. But this is my tragedy. Maybe I make jokes before other’s can. I don’t know. It’s weird. It makes me feel weird about myself. Maybe I want people to think I’m dealing with it and moving on. I am. I am dealing with it, and I do feel like I am moving on…and all the while carrying my little tragedy around in my pocket. But honestly I feel like we did a good job the first time around, and totally screwed it up the second. I know Down Syndrome isn’t my fault. Nothing I did or could have done would have changed it. At least that’s what the doctors say. But it was my body that did it, my egg that didn’t cooperate and split the way that it should have. The egg that had one purpose; to split the right way…couldn’t get it right. “What are the odds?” (A common thing people say); well at thirty-one the odds are one in nine-hundred. If you had an eight hundred and ninety-nine percent chance of winning the lotto, you’d play. I’d have played. ONE IN NINE-HUNDRED!!! I’d say my odds were pretty freaking good. I’m always that ONE, and now they tell me I have a repeat chance of one in ONE-HUNDRED now. How am I supposed to even think about conceiving another child? And they all say “But what are the odds?” and all I can think is “pretty freaking good!” It sickens me to feel this way.

If it could get worse...just wait, it will.

Could it get any worse? Sure. It always can. It always does. I got a call Tuesday (in the midst of this chaos and drama called my family) about some blood work my new OB sent me in for regarding the fact that my mom has mini strokes. He wanted to check for a clotting disorder, just in case. If I choose to get pregnant again, this is something they would need to know. So I went. Nothing was wrong with me, and I knew it. I mean, what are the odds? Apparently pretty freaking good.

“Some of the test came back abnormal”
“Abnormal for what?”
“Well it appears that you may have Lupus.”

Oh, is that it? [She asks herself sarcastically] Why not? After all, look at my odds for anything bad lately. So in the last thirteen months I’ve gotten pregnant, had a perfect daughter, got gall bladder disease, had the said gall removed (therefore I have no more gall), got pregnant with a son, was told son was abnormal, had son die, gave birth to dead son, was told son had Down Syndrome and now it looks like I might have Lupus! I mean why not? Bring it on. Because right now I feel like if it could go wrong, it probably will.

Logan had Downs Syndrome

Tuesday, February 17, 2009

Logan had Downs Syndrome. I went for a follow up OB appointment today and that was the news David and I heard. Man, I can not even begin to put into words the feelings and emotions and thoughts that have been swirling around in my head all day. I felt a huge weight lift off of me when the nurse told us. I don’t know what that weight was. My initial reaction was disbelief. I’m thirty-one! Then I was cynical, because of course my baby would have Downs! I mean why not? Anyone who knows me knows that I “get” the weirdest stuff, so why not this too. Because, after all, that’s my kind of luck! Then relief, relief that it wasn’t something that could have been prevented (and wasn’t because of my neglect or the stupidity of my doctors), relief that Logan wasn’t in pain, relief that the odds of it happening again are 1% (a tad higher than if I hadn’t have had a DS baby previously, and my doc said he’d never seen a woman have 2 DS babies), relief that the doc feels I should go ahead and have more children, relief that my husband agrees, relief that it’s not something genetic that could show up in my daughter or be passed down through her to her kids, relief that it wasn’t something weird and obscure…lots of relief. And with that I feel guilty, lots of guilt. I’m not sure what I feel guilty about. But I feel guilt non-the-less. But I will say that knowing now what happened (I’m one of those people who NEED to know the details of everything) gives me a sense of peace. Perhaps it’s the peace I feel that makes me feel guilty. It’s not ok that Logan died, even if he did have Downs Syndrome, even if the general population would think I was “better off” to have him die than to raise a baby with such a huge handicap. Maybe I feel guilty because I’m afraid that deep down I might feel that way too. I don’t know. I don’t know what I am feeling other than a rush of incomprehensible emotions that are slamming into me one after another. I still lost my son; even if he was physically and mentally retarded, he was still my son. I lost all of my dreams for him, dreams that wouldn’t have come true anyhow being his condition, but I had those dreams for him anyway. I will never be able to look at a little boy and think “oh that’s what my little Logan would be like now” because Logan wouldn’t be like that, he’d be a little boy with Downs and in a totally different developmental stage. I won’t be able to wonder if Logan will look like his daddy, because though he would have features he would still have the Downs “look” about him. And that makes me sad too. I found comfort in those thoughts, thoughts about Logan being just like his daddy and looking like his daddy. Now I feel like I was robbed of those day dreams. I don’t know. I don’t know how much of it really matters in the grand scheme of it all. And I’m scared of what others will think and say and feel. I’m afraid to hear someone say “oh well, it was probably for the best since he had Downs” or “well aren’t you relieved you don’t have to raise a retarded baby?” I don’t want people to think I’m better off that he died so that I wouldn’t have to have a child with such a handicap. Because I don’t know that I’m “better off” now. I mean, lots of people with DS go on to have semi-normal lives. There are varying degrees of DS. I don’t know how bad Logan’s was. Obviously he had some major health issues because they killed him. Sigh, I just feel confused and now I feel very protective of Logan and the memory of him. I feel relieved that I KNOW what happened to him and that it isn’t likely to happen again, but I am so sad that he had such a problem. Anyhow, the doctor said we need to wait a minimum of 6 months before we try to conceive again. The “experts” recommend a year for emotional healing. I’d like to think that I want another baby. I’d like to think that I wouldn’t be a panicked stressed out mess during my next pregnancy since the likely hood of having another Downs baby is relatively small. Although the little voice in my head keeps reminding me that it was an even smaller chance before and it happened to Logan. I’d like to club the little person that produces that voice! I’d like to think that I’m not trying to replace Logan. I’ve somehow gotten it into my head that perhaps God will give me Logan again, his spirit, in another baby. Like the body was bad, so we’re starting over. And the logical part of me knows that is so unfair to the next baby, but the heart part of me, the one that wants my little Logan back, wants to believe that God gives everyone a second try…even spirits whose original bodies didn’t work out. But that’s like reincarnation, and I don’t believe in reincarnation. It’s odd what the heart wants to feel that goes totally against what the mind wants to believe. I can’t get the two inline, I haven’t been able to since Logan left me. On an upside I suppose that my anger at God greatly diminished today. In fact I feel a little foolish in his sight. There I go thinking I know what’s up with God again. I was so angry. I felt betrayed. Like God had pointed a finger at me and singled me out, like he was trying to teach me a lesson in the most horrible way possible. I felt like it was a drive by shooting, just a random act of violence against me and my very soul. Now, now I really do believe that God saved my little Logan from a life of suffering. Saved David and I and Aubrey from a life of heartache watching our little Logan struggle and suffer. My cousin’s little girl was born still seven years ago. She said this to me “Sometimes their quality of life is not worth it and God knows what he is doing.” And that really sunk in deep into my heart today. Logan’s quality of life wasn’t worth God giving him up to me. God knew what he was doing even if I didn’t. Don’t get me wrong, I’m still confused, and angry and sad that God would give me Logan in the first place if he knew that Logan was going to die before I even met him. Why that month? Why that egg? Only God creates life, and he chose to create it that month using that egg. I’ll never understand that. And knowing that God knew what he was doing doesn’t take the hurt away, but I guess it makes it a little more tolerable. I feel very confused right now. I’m not sure which way to go or how to feel. Logan was not meant for this world. A new friend I made in blog land who also lost her little girl in December has this quote written on her MySpace page “An Angel in the Book of Life wrote down our babies birth…and whispered as she closed the book “too beautiful for earth!” I love it. I’d like to think that Logan was too beautiful for this place. My sweet little angel. Oh, but it doesn’t make the pain go away. I had hoped that it would. Silly girl. I’m not sure why people say “try again…” like I screwed it up in the first place. Like my trying would yield different results. Like trying again would give me back the son I lost. There is no trying again. Logan was a one time shot. I tried, and he didn’t make it to me. The next try will be for a different baby, not Logan, as much as my heart wants it to be so. So trying again doesn’t solve a stinkin’ thing! Why do people say that? I will still feel like some one is missing. I will still feel a hole in my heart. I will still feel an immense sorrow for the son I had and so quickly lost. But I’m hoping that the small amount of peace I have today isn’t just shock. I’m hoping it’s a sign that I can survive this horror that has become my life as of late. That every day will get a little easier to be alive in, that I will feel alive again. That I won’t be afraid to have hopes and dreams, that I won’t continue to be afraid that God is hiding around the corner waiting to jump out at me. But I get mad, because I don’t want to see the good in any of this. There isn’t any good in my son dying. I don’t want to try and pretend there is. I don’t want to think that God gave us Logan to pull us closer together, or to teach us a lesson. None of those things reassures me or brings me comfort. I’m trying to just think of it as the luck of the draw. I drew the short straw that month. It was a fluke, a bad egg, a bad month. Sigh. This sucks. The moment I feel some light shinning is the moment it all caves in on me. None of the knowledge, hope, peace or reassurance in the world changes the fact that I had a little boy, and he died, and I will forever feel like there is a huge chunk of my soul missing.