okay.

I miss my son.  Most days I do OK.  I no longer feel the big ginormous gaping hole in the middle of my soul.  But sometimes it's there.  And that is okay.

The blog started as a way to keep acquaintances, my "work family", and other family&friends informed and as a way to protect me from questions that can be just too hard to answer.  So I guess maybe I will keep it up a bit longer - at least until I go back to work.  There are stories that I left untold - that I had planned to tell, but did not, especially James' birth story.  As I get further away from those 6 hours, it feels more and more personal.  Right after it happened, I could have written the story quite linearly, with none of the juicy stuff.  First this, then that.  Now I am processing and I can't tell the story without my deepest and most personal feelings, thoughts, and fears coming through.  So I am writing it.  Just not here, and not as regularly as I should.  I am still a bit surprised that I ever used this format to communicate - but a Facebook post
of "James just died" seemed a little inappropriate and it helped let people know what the expected outcome was, before we got there.  So this medium has served it's purpose for me.

Originally I planned to keep this blog up/readable, so that someone dealing with something similar would have yet another story to read.  Now I am pretty sure that I won't.  I know once posted, the internet never forgets.  But I am pretty sure I don't have an active stalking audience.  I will print it.  I will keep it.  But "ain't nobody need to see that" 20 years from now.

I am doing okay.  not great.  not horrible. okay.  I'm plagued by anxiety normally and it seems to be a heck of a lot worse than usual.  But I can function.  I am terrified to go back to work.  But I will (our Powerball numbers didn't hit).  I'm just a little scared of people now a days...probably just because I am not sure how I will respond.  What about the well meaning patient or their family who last saw me months ago when pregnant - when they so kindly remember that I was having a baby and care enough about me to remember. What do I tell them when they ask how the baby is?  I can't just lie and say fine or this fiction will persist in time.  If I say he died, well that's a whole "nuther" level of awkwardness and emotions.  I will figure it out. I have a few weeks to practice.

Argh.

Also, this whole Lake Norman area is a bit small.  If you see me out and about - please come up and say hi.  I am grieving.  I don't have drug-resistent TB.  My grief and anxiety make it a little harder for me to initiate a conversation, but I still like people!!!  Well, let's be a bit more honest.  I still like SOME people ;)

Sunshine, jellybeans and rainbows.

I will be....okay...

3 weeks...

They put the wrong time of death on James' death certificate.  It doesn't really bother me.  Heck, they gave him credit for an extra 15 minutes.  I will probably always be fixated on that.  One of the things that is so astounding to me is how long he went between his last breath and when his heart stopped beating.  Grown-ups (the patients I'm used to seeing) tend to die quickly once they stop breathing.  Little James lasted at least 10 minutes (see: fetal hemaglobin) from the time of what was clearly his last breath until his heart stopped. It was weird to hold him when he had clearly passed on, but still had a heart beat.  

I wish there were new moments and new photographs to see; I love looking at what we have, and seeing new pictures taken by different people.  But I have already seen them, even if it's a new angle, I've already seen those moments. No new ones are coming. Sometimes I kick myself and wonder, "what if." But that isn't going to help me or anyone else.  

We are trying to take advantage of the time while my body heals to make some other memories as a family.  However, I can't help but think of how I'd rather it had all turned out differently.  But we are still having fun.  Moving forward is weird.

Some good organizations...

We have started a "legacy page" for James Logan at the trisomy 18 foundation website.  If you would like to make a donation in his honor, we would be delighted.    http://www.trisomy18.org/goto/james_logan

When we first received James' diagnosis, it was one of the first sources of information that we found and it did a good job of presenting an unbiased presentation of the options and preliminary information. There are better and more detailed places that offer more information on the care and keeping of trisomy 18/13 kids (SOFT), but the trisomy 18 site was our first point of contact with our new reality and I am happy to support its continued operation.  They offer legacy pages where families can memorialize their children and I poured over those sites in the beginning attempting to figure out the overall prognosis for my little boy.  I hope that someone can get something useful out of James site.

Other resources that we have found to be amazingly useful:

Hospice and Palliative Care of Charlotte "Kids Path" program has a Perinatal hospice program.  Although we were not lucky enough to get to use their home hospice programs, my discussions with their director gave me amazing comfort in knowing we could get what we needed.  She also helped me put together our birth plan.

Now I Lay Me Down to Sleep - this is a national organization dedicated to helping families of stillborn or early infant death babies by providing them with a professional photographer to take pictures of their previous child to keep forever.  We were lucky enough to work with Faith Massey who is our area coordinator in the prenatal phase.  She was, unfortunately, out of town on the date of our induction. However, she went above and beyond and found us another photographer for that day. Ron Randle of Love Shutter photography was kind enough to step in on the day of our delivery and was able to make it to the hospital earlier than expected to capture pictures of our baby before his death.  Pretty amazing people and I cannot wait to see the pictures, due in any day.

One week down...a lifetime to go...

 

It has been a little bit more than a week since we loved and lost our sweet James.  We still hurt.  My arms are still empty - except when Caitlyn or Alex pop in to help with a hug.  It wasn't supposed to be this way.  But it is.  The kids are doing fairly well. We talk about James sometimes; we also watch "Dumb and Dumber," go to swim meets, and eat dinner.  Life keeps going.  I am so grateful to have my babies and my husband to get through these days.  Grief is a full time job and I am exhausted.  I try so hard to be myself for others, I just run out of steam and need space.  Family is visiting from out of town and staying with my parents and I almost melted down today and I had to sneak away for awhile. It feels so selfish, but the alternative is a breakdown.

 I finally have gotten around to reading some of the "dealing with all of this crap" literature that is out there.  I started to read, "I Will Carry You" - a narrative by Angie Smith which detailed her journey carrying her baby to term with a fatal prenatal diagnosis.  Her book is well written and enjoyable, however, I am not quite as biblically based as she is.  I imagine for a fervent biblical Christian it would be an amazing book.

I am currently reading "A Gift of Time" which talks about the experience of carrying a baby to term in spite of poor prenatal diagnosis - I suppose I was meant to read the book earlier in my process.  It talks about the decision to carry a baby to term even as the medical community encourages/offers to terminate. It talks about anticipatory grief.  It talks about the grief process that I am going through now. I suppose had I read this as I went through my process before his birth, it would have validated my feeling and emotions - but I think everything was too raw.  I knew my feelings were valid and I had good listeners all around me who were willing to help me talk things through.  Reading it now, it helps.  It still brings on the tears, but it comes more from mutual experience from the quoted parents.  I think this book is something anyone faced with a poor prenatal diagnosis should read and consider before making any final decisions.

I am so grateful that we chose the path that we did.  As I have written before, termination was not something that we meaningfully considered for our situation.  Based on the information we had, James had a chance (even if small) to make it a few hours/days/weeks/ or (if we dared to dream) months - and if I could give him the opportunity to live that we were going to do it.  On the other hand, I was also not willing to do some aggressive interventions that other families of Trisomy 18 babies have chosen.  I would never say that their choices were wrong, but I don't think mine were wrong either.   I could not chose to provide a type of care for my baby that I would never choose for myself.

I still play a little bit of the "what ifs."  For now I'm pretty sure my body doesn't have the strength to go through another pregnancy.  I felt old in this pregnancy. I was sore all the time, even though the baby was so tiny.  My blood pressure started to get higher.  I just feel like my body was telling me something.  What if we had terminated?  I wouldn't know or worry about all of this "being old" crud and maybe I'd be brave (or foolish) enough to try again? - but really, I know that's a dumb "what if."  I know myself and I know that termination would have left me feeling guilty and hollow; I would've had a much more difficult time healing and recovering.

Less often I worry that I made the wrong choice in choosing to only provide care aimed at making him comfortable. I read about other people's children with Trisomy 18 who have thrived. I look at their pictures and I feel jealous.  But I know in my heart that James was not destined to be one of those Trisomy 18 babies who thrives.  He was little and (perfectly) broken.  He lived as he was meant to.

I know that my candor about some of this can be a little alienating or awkward for those of you who haven't lived it.  Some things sound pretty awful.  However, everything about this is pretty awful.  I am not looking for pity, just trying to find my own understanding in the hopes of helping someone else one day.  I write all of this in the hope that someone reads this and can find a way to help a mother going through this in the future.

a bit of hiding!

Thank you to everyone for your kind words and generous spirits!  We are holding our heads up and getting through each day as it comes.  There are tears.  I get mad.  I get really mad.  But we will make it through to a better understanding of ourselves and our existence.

I had the most amazing birth experience and I am so grateful for what we got to have with James.  Do I wish we had more, absolutely...but were one minute away from having nothing, so we are super-appreciative for the time we had.  I haven't written his birth story yet, but I will;  I am not sure I will be able to share it - although I wear my heart on my sleeve and have no filter, these moments are so intensely personal I don't know if I can.  On the other hand, it is hard to have something so beautiful and not share it with the world.  I guess the most important part is that I get it down on paper, then decide where it goes.

For now, we do not plan a memorial service.  James' life was short and beautiful.  Every moment of it was a memorial and testament to him and for now, we are content to remember him through those moments.  In time, we may plan some sort of memorial fundraising event to benefit trisomy18.org.  But not yet.

....

James Logan Haponik

Born June 22, 2013 at 9:57 am, expired June 22, 2013 at 3:48 pm.  His time was full of love and peace and cuddles.  We are so blessed.  We are so thankful for the thoughts and prayers of all of those who have kept us going.

Quick update!

We checked into the hospital last night to start induction with cervadil.  The night was filled with many contractions, but per original report no cervical change.  However, when checked at 8:15 this morning by Dr. Little I was at 4cm and pitocin was adjusted.  Things went quick from there and James Logan was born breech at 9:57 this morning.  He weighed in at 3#12oz with a big head for a little baby.

He's been hanging out since then, but isn't doing very well.  We don't expect him to make it much longer but we are enjoying every minute we have with him.

More updates and details later.