Feeling Gray

In pregnancy I had my donut days- days where I felt sad and didn’t feel up to facing the world.  But I would eat a donut and pull it together.  I needed a name for those days so that when Chris asked how my day was, I could sum it up in two words- Donut Day.  Those days are long behind me.  In the hospital we use a pain scale to evaluate how much pain someone is in.  “On a scale of 1 to 10, 1 being no pain, 10 being your hand in a blender, what number would you give your pain?”  Sometimes patients would be sitting comfortably, texting and rate their pain as 7 or 8, but not be even grimace.  Those patients had never experienced a 10/10 pain, so they thought what they were experience was bad.  We are not supposed to judge other people’s perception of pain, but I have been with many women in labor, women with kidney stones and I have seen what 10/10 pain looks like.  I can now say I’ve been there myself.  And knowing what 10/10 looks and feels like, someone with 7/10 pain shouldn’t be texting.  I wish there was a scale of sadness, because I thought I knew what sadness was when I was pregnant.  And I probably knew it more than some people.  I thought Donut Days were 7/10, but now that I’ve reached new levels of sadness I can say they were more like 3-4/10.  I was that person texting while I thought I was really sad. Now I’m in the real throws of sadness.

So I need a new term because now the good days are Donut Days.  The best I can come up with is Gray.  It’s sort of like the blues, but deeper and sadder.  I can feel it creeping up- it starts low in my belly and slowly rises until my head is swimming in it.  When it starts I can tell Chris “I’m feeling gray” and he knows.  There’s nothing he or anyone can do, but I feel like I need someone to know, maybe so I don’t feel so alone.  Because on the outside I may not be crying, I could look like I’m having a simple Donut Day, but really on the inside I’m gray.   I don’t enjoy it- I’d rather feel more donut-y, which is more of a blank feeling.

Today started out gray.  I didn’t get out of bed until 11 and that was only because I had a date planned.  I had dinner with my cousin and a friend last night and laughed a bit more than I have for a while.  In the car ride home I told Chris, “At dinner, I forgot.”  I forgot what was going on in my life and in my head, which was good.  It was a nice distraction.  But then when I remember again, it’s a big crash.  The fall is harder because I fell from a momentary high.  So maybe this morning was still part of my crash from last night.  Or perhaps it was because I decided to make some phone calls today, phone calls I was not looking forward to.  I called the tailor.  I called the dentist to reschedule an appointment (last time I was there they knew I was pregnant).  And I called work.

Thinking about work has caused me a lot of anxiety.  It’s often on my mind because returning to work would be progress.  It would be a distraction.  I’m not enjoying being home and so a weird part of me looks forward to returning to work, but then I think about what it will be like and I start to dread it.  I’ll basically be trading one discomfort for another.  Being at home, feeling useless and caught up in my own thoughts is not fun.  But being at work, facing pregnant patients, facing pregnant coworkers and fielding questions about my baby from patients is not fun either.  I have to pick my poison.  Work has been especially on my mind because the summer schedule is out- and my name is all over it.  It makes perfect sense that it is, my future at work has been uncertain, so they just went with what they knew from before.  I’ve been told that I can take the time I need, but seeing my name on a may schedule felt like some sort of pressure.  I know that was not the intention, but that was my reaction.  I wanted to call work to at least start the conversation and really see what was expected of me.  I’m especially dreading call- 24 hours is a long time.  I used to say, I can do anything for 24 hours!  We used to do 48 hours of weekend call and that was killer, so when we switched to shorter 24 hour shifts, it felt so manageable.  Now it feels like forever. If can’t go 12 hours now without crying, how will I ever manage 24?  And nights are the worst- so I’ll be sleep deprived, fighting the worst of my emotions.  And when I don’t get enough sleep now, I have a much worse day.  And lastly, being on call means doing rounds- seeing patients in the hospital who had their babies the day before.  This might just do me in.  Seeing patients with their newborns, tired but glowing, having the experience I wanted so badly.  It feels like salt in the wound.  And there is an expectation to coo over their baby.  I can not imagine doing that.  These things all swam around in my mind when I saw my name on the summer schedule.  So I needed to make the call to address it and see my options.

I was nervous about calling- what if they said my schedule was not negotiable?  Summer is our busiest time and I think we are in line for our busiest summer yet.  What if they don’t understand how hard it will be for me to return?  I know I have to go slow, ease into it, if I don’t want to burn out- but is that possible?  I take so much comfort when people are surprised that I am even returning to work.  It sends the message that they understand how hard it will be in my field.  And part of me never wants to return.  But I can’t stay at home, I have nothing else to do and deep down I do really like my work.  I want the expectation to be that I wouldn’t come back for a long time, so that when I do come back I’m exceeding expectations.  Versus if the expectation is I’m back at 10 weeks, and I am not, then I’ve disappointed people.

The good news is, work does seem very accommodating.  I laid out a tentative plan which seem doable- administrative work at first, ease into seeing patients, delay call for another month.  And I am optimistic that if I have trouble, my job will work with me.  I just hope that when they see me back, they don’t that I’m back to normal.  I wont be.  I don’t think I’ll ever be.

What did I do?

Over thanksgiving we visited my husband’s family in the Midwest.  Because it involved flying and because I had reached viability with a complicated pregnancy (24 weeks. a big landmark for me- if baby was born, she could live), I wanted to travel with my records.  I didn’t want to see them, but I wanted them in my suitcase, just in case.  It’s kinda the rule- if you are prepared for the disaster, it won’t happen.  So my midwives sealed them up in an envelope and those records traveled with me.  This weekend while Chris was straightening up he came across an envelope with my name on it.  I recognized it as those records.  I hadn’t wanted to read them before, but now I was curious.  It was a treat reading about my pregnancy before the oligohydramnios, before pulmonary hypoplasia became part of my everyday vocabulary.  My midwives did a great job documenting my pregnancy and it was fun to read my story in their words.  The record only took me to about 24 weeks, and it was a pleasant 24 weeks in retrospect.   My early anxiety about miscarriage in the first trimester was documented.  After I received the phone call about the Down Syndrome diagnosis, my midwife wrote I was relieved it wasn’t trisomy 18/13 and was most concerned about risk of stillbirth.  They wrote of classes I was attending to prepare for a child with Down Syndrome, of tearful visits and of my continued running in pregnancy. 

Sometimes I wonder if when I look back, I see my reactions in pregnancy in too positive a light.  Yes, I accepted the Down Syndrome diagnosis, but I struggled with it too.  I often felt like my prenatal visits were a form of therapy- I was honest about how I was feeling, I felt like I could cry there without judgment.  Sometimes in trying to make sense of this all, I wonder if losing Mabel was some sort of punishment for not being accepting enough.  Reading my prenatal records was nice validation.  I was ready for Mabel.  I wanted her.  I really did.

Isn’t it funny how I feel like there has to be a reason for this?  I must have done something to deserve it.  Was I too worried about the little things?  What was it that I took for granted?  What lesson did I need to learn?  I think it’s a simply a numbers game.  A cruel numbers game.  What are the odds that this would happen to someone?  What are the odds that this would happen to a midwife?  Becoming a midwife is not choosing a career, it’s committing to a lifestyle.  We give up our nights and our weekends to help people on their journey to become mothers.  How cruel it is to be handed this fate.

It’s like running a marathon

I can’t escape it- reminders everywhere.  The night before my due date a friend on facebook announced her pregnancy and now a belly photo follows.  At bootcamp the woman who owns the studio had her baby a week after I lost Mabel. And she’s got newborn pictures posted right next to the sign in board.  I went to a bridal shower (I’m a bridesmaid) yesterday, excited to have a day where I could focus on someone else, and another bridesmaid brought her 3-month old. I was warned ahead of time that she would and I thought I’d be fine. But seeing her in the parking lot carrying the baby carrier just reminded me that I should be doing the same but I’m empty handed.  And then there are those posts on fb about how grateful someone is for what they have. Or squeezing their kids a little tighter today. I certainly think pregnancy should be celebrated, newborns need to be near their mothers to nurse and people should be thankful for what they’re given.  These are things I would be doing too.  Heck, these are things under any other circumstances, I would be celebrating with my friends.  Even my latest distraction- Friday Night Lights- just had a plot line where a main character had a baby.  It all just feels like salt in my wounds.

I’m not saying these things shouldn’t happen.  People have every right to celebrate what they have- pregnancy and babies.  I hope no one sees this as an attack.  It’s just a frustration.  An unavoidable frustration.  Life goes on.  More people will get pregnant.  More babies will be born.  To borrow a phrase I used earlier in pregnancy- “This is our life now.”

 

I know the answer is to avoid. Get off facebook, don’t go to bootcamp, leave if I see a newborn. But these are all places that I need in a way- I need distraction and exercise.  I have already given up so much, why should I have to give up some things that used to make me happy?

 

When I get upset seeing pregnant women, hearing about their recent births or seeing them with their babies, it’s not because I necessarily resent them.  It’s just that I’m supposed to have all those things too.  I did what they did and how is it that I’m standing here empty handed?  Like someone who has never had a baby?  Before I had Mabel I was content being someone without kids.  But now I’m not content being in that category.  It’s like running a marathon- I ran the same race that everyone else did, but at the end I don’t get a medal.  I don’t get my photo taken.  I don’t get a rest.  Instead I’m told I have to run it all over again and no one will really know that I even ran the first one.  And they won’t tell me when they’ll even let me in the next race.  I have to wait.  And watch others as they cross the finish line and are rewarded and recognized for it.

The little things I’m not doing

The grocery store is causing me some anxiety.  One day two weeks ago I ran in to buy milk and eggs and the experience was oddly painful.  I’m new to this town, so it’s not like I would run into anyone I know there.  And on the slim chance I did, I’m pretty sure they’d know my circumstances.  Maybe I’m hesitant to see moms and their kids in a place that many moms are with their kids.  Maybe I’m afraid I’ll see baby related stuff.  When I went in a few weeks ago, I almost started right down the baby aisle- luckily I caught myself, but it didn’t feel good.  Or maybe grocery shopping is a return to normalcy.  I’ve cooked only one meal since I was hospitalized thanks to an army of friends and kind people.  Cooking feels hard, though the idea of it is getting easier.  I think I’ll start baking first.  But cooking means meal planning which means grocery shopping.  Things we did while I was still pregnant with Mabel.  It’s like going back to everyday life as if things are fine and they are not fine.  Everything has changed- but not in the grocery store.  So I haven’t really gone grocery shopping.

I have a bridesmaid’s dress that need tailoring.  The wedding is in 4 weeks.  I’m not sure how long a tailor would need to do the job and I’m afraid to call.  Because it’s not that simple.  If I call, I’ll want to know the minimum amount of time she needs, because my body is still changing.  I’m afraid she’ll think I’m just someone who is trying to lose weight last minute (there is some truth to that), but I think it’s very reasonable for my shape to change just being so recently postpartum.  But I don’t want to say that.  I don’t want to say, I think my body will be changing because I just had a baby.  I’m afraid it will invite congratulatory comments, which I’m not in the mood for.  I realize I may not need to do anything more than ask the minimum amount of time needed for tailoring, but my fears are still there.  So I haven’t called the tailor.

We have new neighbors.  When we lived in our old house and new neighbors moved in, I brought over some cookies and card welcoming them to the neighborhood, with our names and contact info on it.  I remember having a debate with Chris and our roommate at the time about whether it was weird or not.  I am a firm believer in welcoming people with food.  It’s a nice gesture.  Chris and roommate were unconvinced.   They thought it was awkward (which it was a little bit- but I think that speaks to our old neighbors being awkward).  When we moved into our current house a couple of the neighbors stopped by bearing food and introduced themselves.  It was quite pleasant and not awkward at all, thus proving my theory on nice gestures.  So now a family has moved in across the street.  It’s the first house in a new development and I’m unsure if anyone has stopped by or not.  I would like to but I’m afraid.  I’m nervous because they might ask in the casual conversation that happens on the doorstep if we have any kids.  On one of my babyloss boards, someone commented that they respond differently depending on the situation.  If it’s a stranger they’d ever see again, they might not mention their lost child.  If it’s someone they might have a relationship with in the future, they would mention their lost child.  There is something about having existing kids already that might make this question easier to answer.  Because if I had even one living child it easily identifies me as a mother.  But no living child puts me in limbo.  Not a mother.  Not not a mother.  And these neighbors could be someone we develop a relationship with in the future, but how do you bring the death of your only child into the first conversation?  Yet I can’t seem to get my head around ever denying I had Mabel.  To anyone.  It’s hard enough that she’s not here.  At this moment I want her memory to live on even if it makes interactions uncomfortable.  I’m not ready for that discomfort yet, so I haven’t met the new neighbors.

The newborn things that will never be

Four weeks old today- that’s how old my daughter would have been if she lived.  I imagine someone cooing over my baby in the carrier as we are grocery shopping, asking how old?  One month.  Something I will never get to say.  I used to worry over whether I’d want to tell onlookers that she has Down Syndrome.  A problem I wish I had.  My world is filled with things that will never be.  And these are just the things I will miss as a newborn.  I will not have any new photos of my baby.  I am lucky to have over 200 photos documenting her short life but I will never have a new one.  I have one of hers as the background on my phone and I won’t have an updated ones to swap out.  I have posted a few to facebook and those will likely be the only ones I share.  As the time between now and when I met my baby grows, my daughter will not.  She will always be a six-hour old newborn in my mind.  I will not see who she grows into. I will not see what color her hair will be when all the newborn hair falls out and the new hair comes in.  I won’t ever know the true color of her eyes, because she barely opened her eyes during her short life, saving all her energy just to breathe.  I will never feel the weight of her in my arms as she nurses.  I will never change her diaper.  I will never comfort her when she’s crying.  I will never get frustrated at her for waking me up in the middle of the night. I will never get to bring her to the office to show her off.  I will never dress her in the girly girl clothes I had envisioned. I will never get to introduce her to anyone, “this is Mabel.”

My due date

Because we knew she was sick, is there expectation that it should hurt less?  I have this sense that since we had such a poor prognosis and knew ahead of time that death was a possibility, we have to accept it more easily.  I’m  not sure where this comes from- maybe it’s just a worry that people will think that.  Honestly, all the advanced knowledge did was make those six hours of her life more manageable in a way.  We didn’t have to deal with the shock of it all in addition to making decisions and enjoying our time with her.  We just had to deal with processing her death and not the loss of a healthy baby.  We knew she wouldn’t be healthy.  Sometimes I wonder if the fall is greater- because most people take for granted the promise of a healthy or even live baby- but since we knew how amazing it would be to have that opportunity, we really know what we were missing.  So much more emotional energy spent in wanting, hoping that my baby would live

I didn’t think it would be this hard. I had no idea.  I had played out many scenarios in my head.  We had talked about the hard stuff.  We talked about taking a baby home on a ventilator.  We talked about having to take our child off the ventilator.  We both thought our baby might die.  But what does it mean to talk about these things when you haven’t even met the child?

I don’t think I spent time thinking about what it would feel like after I took my child off the ventilator.  Part of it might have been self-protective.  Maybe I didn’t think about what it would be like to leave the hospital with empty arms because it was too painful to even think about.  Now I’m living that pain.  It just seemed too unreal to have spent all that time growing a baby and all that energy adjusting to the diagnoses, to not be rewarded with a baby to take home.

I’m having a hard time.  I think people expect me to be ok.  I hear it- “Meghan will be fine.”  “You are so strong.”  I was able to take so much bad news in pregnancy and find something to be grateful for.  I’m still trying to do that.  I’m trying but it’s hard.  I remember telling Chris a few times in pregnancy “I don’t want to do this anymore.”  I wanted just to be happy, to enjoy pregnancy, to look forward to birth.  Well, I really don’t want to do this anymore.  I wake up everyday and don’t really want to be me.  When I’m crying, it hurts.  When I’m not crying I have a constant ache that reminds me what’s missing.  When I’m enjoying myself, I still struggle with guilt.  It feels like a lose-lose situation.  I need something to look forward to. I need to be reminded that good things will come.  I have my up moments and my down ones.  I recognize today is full of down ones.  Of course it is- it’s my due date.

After today, the pregnancy is over.  I’m postpartum.  I’m really supposed to be in that time period when there is supposed to be a newborn.  The day my entire pregnancy was based on and growing towards has come and will go.  This is some sort of end, an end to that phase of my life.  It’s like burying my baby all over again.

The Good and the Bad

What good can come?

This experience has sliced me open and spilled my guts all over the table for the world to see.  I know I could have kept all the details of my circumstances and my feelings to myself, but I don’t think I would have survived.  Carrying a sick baby and then watching that sick baby die was so very hard, uniquely hard because of my job.  I needed people to understand, to help me- so I put it all out there.

Opening up, asking for help through this has helped me get closer to some people.  It’s funny how you can know people for a long time, know that they are lovely people but not really get to know them.  My community has rallied.  I’m impressed about how some people can be so empathetic, can say just the right thing or can just be so darn pleasant.  After telling a friend about how I spent a long afternoon with one visitor, my friend said “I didn’t know you were close with her.”  I answered, “I’m not.”  Until all this happened I hadn’t spent much time with her, but I had just the most pleasant visit.  I’m having more of these pleasant visits with people.  I’ve opened myself up to a world of people who care and understand.  In my vulnerability, they have let me in.  This is good.

I have also now realized how we can not truly know other people’s situations.  I like to think I’ll have a new sensitivity to others.   An empathy for others grief.  My patients who are trying to conceive but can’t.  I get that.  My patients who have lost their child in a fire.  I get that.  I won’t really know they feel exactly, but I can empathize.  I can understand that they are going through a really hard time.  This is good.

Experience.  I’ve wanted for a very long time to be a mother.  One reason I was eager to find a partner in life was because I wanted to start a family.  My book group once read a book that gave suggestions to women looking for men- the author suggested that when dating, pick three things that are important to you and if your date meets those three things, he’s worth dating.  Mine were: kind, financially stable and wants kids.  Wants kids.  One of the three most important things to me.  So I may not have the experience yet of raising kids, I have the experience of growing one.  As someone who is faced with pregnant woman in her day to day work life, I am really thankful I got to be pregnant.  I did it well.  Despite the worry and emotional turmoil, I really enjoyed being pregnant.  My happiest time was in the hospital in those last couple weeks- I wasn’t worried about the baby thanks to the monitoring- and I was confident I would have a live baby.  Take away that risk of loss and suddenly I was comfortable.  I’m glad those two weeks at least are my last memories of pregnancy.  I know there were times of fear and dread, but ultimately because of those last weeks, I look back on pregnancy fondly.  And I now have experience that will contribute to my work.  I will be even more compassionate to many of my patients.  This is good.

What bad may come?

On the flip side, I might be less tolerant of some of my patients.  I have a new perspective on what is important and I may have a hard time sympathizing with someone who is struggling with something I consider unimportant.  I remember in pregnancy having a conversation with a patient about induction.  Being 40 years old, she had a risk factor for stillbirth, which increased after age 40.  Our protocol is to induce by 41 weeks in this case.  She was concerned about a recent report that suggested a link between Pitocin and autism.  I remember sitting there carrying a baby that I wasn’t sure would be born alive and silently screaming in my head- what’s the point of worrying about autism if you have a dead baby?!?  At the time,  I was able to put my own experience aside and be sympathetic.  I worry I’ll be unable to do that in the future.  This is bad.

I think I will also have trouble being sympathetic to those with kids who are struggling for some reason.  It could be a very good reason and I still might have trouble digging deep and being genuinely sympathetic.  I know I’ll have trouble expressing joy for those who get pregnant and have babies while I am still waiting my turn.  Somewhere deep down, I will be happy for them, because pregnancy and birth generally is a time to celebrate.  But it will be overshadowed by a reminder of my sadness and grief and jealousy over their situation.  This is bad.

I know some of these things are temporary.  Some may last a long time.  Some may stick with me forever.  But I will carry my experience with me for the good and for the bad.

Would I take away the grief?

Would I do it again? Would I take away the grief? The pain?

This question came up on one of my babyloss message boards.  The answers are split.  Some say yes- they would take it all away.  Go back to a time before they were pregnant and erase it all.  Never have had the experience.  It’s just too painful.  Some say no- they wouldn’t erase the grief if they could.  Their pain honors their child.

My heart aches reading both their responses.  If there were anyway I could make this hurt less, I would try it.  I would.  I would easily give up this pain if I knew how.  I hate how I feel everyday.  I hate the tears when they come and I hate the ache and numbness when they don’t.  The worst part is I know I have to feel this pain.  It’s necessary to move.  It’s awful but important.  I think I am in the second camp.  I wouldn’t wish this on anyone- to have a much desired pregnancy and then given a difficult diagnosis, to go forward with tough choices only to be handed tougher ones, to be given a baby to grow and feel and love, only to be told she might die, to hold their child knowing she is battling pain, hungry for air, to choose the moment their child will die, to hold her body as it goes from warm to cold.  And then to go forward with everyday life.  This is more than one person should be given.

But there is too much I don’t want to forget.  That moment of excitement and joy seeing the positive pregnancy test.  Seeing the flicker of a heartbeat.  That moment when I learned my baby had Downs Syndrome and she had a chance at life.  The ultrasounds showing normal anatomy.  Feeling the first movements.  Lying in bed, feeling kicks and saying to Chris- I’m going to miss this when she’s born.  The time in the hospital when I exuded pregnancy, finally really enjoying my time with my baby.  The pride I felt when her heart rate never waivered, contracting or not.  That first moment when I saw her face.  The sound of her cry, the only time we heard her voice.  The warmth of her body.  These are things that I don’t think I could erase.  These memories are a mix of pain and wonder.

When I’m hurting, sitting alone at home, I have to remember a few things.  I am grateful I could be pregnant.  I’m grateful I could labor.  I’m grateful I could push my baby out and bring her up on my belly.  I’m grateful I could meet the being that I spent months growing and feeling.  I’m grateful I could be there and hold my daughter for her last moments.

The statistic

I wrote this email on 10/30/13. It was from me to another pregnant woman who recently received a prenatal Down Syndrome diagnosis.  This is my second email to her.  In the first I introduced myself and reached out to make a connection.  She responded pleasantly but with a different coping mechanism than me.  She was relying on her faith to help heal her baby, who was given the likely diagnosis based on a blood test and ultrasound findings.

 

“No I do not think you’re crazy!  I think when we are given difficult diagnoses, we all look for ways to adjust and cope.  If I were religious I would be relying on my faith too.  I’m finding my own ways to cope.  I’m not sure if [our midwife] told you, I am a midwife myself and so as new things came up by ultrasound I coped by diving into the internet, research, journal articles and medical opinions.  Which was both good and bad at first. Sometimes it caused me more worry than I needed.  Now I only research the most important things and I’m spending more time making connections with people in similar situations and learning about their experiences.  I”ve been on some down syndrome message boards on facebook- which have been nice. And I’m a reader, so I’m reading some books- Bloom By Kelle Hampton and The Shape of the Eye by George Estreich.  And I”m a talker- I’m surrounded by medical people at work and so its nice to be able to talk to people who I dont have to explain everything to.  It can also be hard because at the same time I’m surrounded by pregnancy and can never really escape thinking about my situation. 

 

I can also understand about ultrasounds-  they are not perfect and I find myself hoping for the best too.  They saw an enlarged bladder on ultrasound and now its resolved.  They also see clubbed feet, but some people have told me that they were told their baby had clubbed feet on ultrasound too but turned out feet were fine at birth.  So there is always hope.  In the meantime, though I am hopeful, I am also preparing for clubbed feet, until I know more.  And I’m throwing myself into preparing about the down syndrome diagnosis, because we had the CVS, so I do know that for certain and it is nice I have something certain I can hold on to- because there is so much unknown.  

So, my apologies if this is rambling (i’m a talker).  Its just nice to know someone who probably has been having some similar thoughts and struggles. And to see how other people deal with them. I agree, it does take a special person to take news like this and look to a bright future, however we envision it.”

 

This woman recently had her baby.  I know that much.  Her baby lived and mine died.  I look back on this email and my heart aches for the person I was when I was writing it.  I had been scared of the Down Syndrome diagnosis and all it brought, but I was hopeful.  I was trying so hard to accept.  I look back and think how optimistic I was.  I don’t know any more about this woman and her baby- whether the Down Syndrome diagnosis was confirmed at birth, whether her baby had the birth defects they suspected on ultrasound.  I’m not sure I want to know- because I’m jealous.  And the unfairness of it all really hurts.  I had accepted what was given to me as fact and went with it.  And my baby dies?  And someone who was hoping for a different outcome gets a live baby?  I hope this doesn’t sound like I wish something bad to have happened to her baby.  It’s the opposite- I’m glad her baby lived and I hope she is doing well.  I just wish mine could have too.  I feel like I earned it.  Or maybe not?  I remember feeling lucky compared to her because her baby had suspected heart defects seen on ultrasound and mine didn’t.  That hurts to think about now.  Was I too arrogant?  Would she think that maybe my baby would have lived if only I prayed about her more?  Should I have prayed?

 

These are just questions that run wildly through my head.  I know there is no reason to it.  I know it’s just numbers- chance.  I’m not a statistic, I’m the statistic.  1/625 risk of Down Syndrome. 3% risk of renal defects in children with Down Syndrome.  If I did my math right that’s a 1/100,000 chance of this happening.  This is the only way I can think to cope.  What are the chances of it happening again- 1/100,000.  I can’t win the lottery twice, right?  I’ve had enough unfairness. Enough.

 

I’m going to try to remember my own words, written by a more hopeful, optimistic me.   Though today it’s hard.

 

“it does take a special person to take news like this and look to a bright future, however we envision it”

A baby-shaped space

We moved to our town for the schools.  There are plenty of towns nearer the highway, easier commute for both Chris and me.  But when we were looking at houses to better Chris’s commute, I restricted our search to towns with good schools.  For our kids.  I would spend more time in the car; friends would joke we live in Canada because the distance is so “far;”  we would lament that there are no good restaurants near us.   All so that we can send our kids to the good schools.  It’s what you do for your kids, right?  We bought this big house- people often comment “there’s just the two of you living there?”  All that house for the two of us.  Nope.  All that house for my future family.  We didn’t buy this house for just us.  We bought with kids in mind.  We planned which room would be the nursery. We thought the basement would make a great playroom.  Eventually that exercise room could be a bedroom, once we filled the upstairs bedrooms with kids.  Those kids could ride their bikes on that small street along the side of our property.  We bought a king sized bed- delivered the day we left the hospital in December after the oligohydramnios diagnosis.  I’ve wanted a king sized bed, but it was a luxury we could live without.  Until we had the incentive of a child.  Co-sleeping.  I imagined wanting the extra space so that I could roll over easily at night and breastfeed without having to get up.  Even that darn elliptical was bought with baby in mind.  It was supposed to help me get through the winter when I was too pregnant to run.  It was supposed to be how I exercised postpartum- with baby at my side.  Now that we finally have it replaced, I kind of want to scream at the company- you’re too late.  It’s worthless now. You missed your chance.  This was supposed to be for my baby and my baby died.  Even living my life, in my house, with my stuff is a reminder of what is missing.  I’m hoping that moving to our town, buying the big house, getting a king bed and gaining an elliptical will have been worth our while.  When that universe gets around to being good to me.

 

Chris and I used to debate how many kids we wanted- I wanted more, he wanted less.  What a nice luxury that was, to think we had a say in how many kids we have.   Frankly, I’ll take one.  One living, breathing, loving child.  One.

 

It’s too quiet in my house.  I wake up and hear nothing.  Another reminder.  No baby crying.  No alarm going off reminding me to pump.  No garage door opening on my way out to visit the NICU.  Instead I put on Friday Night Lights or Pandora just to fill that empty baby-shaped space.