Jacob's Story ~ Chapter 5 ~ The Next Day

~ The Next Day ~
(that seemed to never end...)

I think we slept for about two hours before something woke us up, maybe the sound of the kids downstairs.  My parents had stayed in a hotel and said they would come over in the morning around 8:30.  I opened my eyes and as I lay there, my only view was the corner of the room I had set up for Jacob. His bassinet, his receiving blankets, his dresser filled with clean clothes....wait let me rephrase that....his empty bassinet, his not necessary receiving blankets, his useless dresser.  I slowly remember recognizing the physical pain that was building as the pain killers from the night before must have been wearing off.  My body and my mind ached.  I don't remember crying, I was too exhausted still to muster any more tears.  I felt like hell.  We knew we had to get up and see the kids....what would we say? We wanted to see the kids but how do you explain to an almost 3 year old and a 18 month old that their baby brother could not come home, was not in mommy's belly anymore and would never come home?  To be honest, I don't even remember how we told them.  That morning really is a blur.  I am sure I got out of bed and went to the bathroom.  This is always my least favorite part of having just had a baby...the amount of time just going to the bathroom takes.  Blood everywhere, pads you have to change and refresh, huge unattractive underwear making you feel as though you somehow belong in a nursing home, all the evidence of what had happened almost exactly 12 hours earlier by that point, but there was no baby to show for it.  Just a mess I had to deal with and would have to deal with for weeks to come.  My milk had not come in yet but I knew that was part of the f*cked up horizon we had in our lives now. 

We made our way downstairs and I think I sent my mom to fill the prescriptions for the pain killers.  I remember thinking I should eat something but I didn't care if I ever ate anything again. I had been pregnant or nursing non stop since we got pregnant with Adam in 2008.  This was 2012 and for the first time my needing to eat in order to support either a growing baby or a nursing baby no longer existed.  I don't think I even realized how much that alone must have been difficult as it was 4 years of eating for someone else and all of a sudden, it was done, pointless.  It would be months before food seemed interesting to me again...once it did, the only thing I ate were tortilla chips with cheddar cheese melted on top, how sad is that.  I had wanted to be a chef back in college and here I was only  able to fathom eating chips and cheese.  Ugh.  Anyway, it was Sunday.  The thought passed my mind several times about what church must have been like that morning.  I knew almost everyone that had been at my shower ready to celebrate had probably gone home thinking that I was just having a long labor.  They would come into church this morning and hear the worst announcement maybe that had ever been announced in the history of our young church.  It's a small church in comparison to large Baptist churches, maybe only 100 people usually on a Sunday morning, so all people that we knew really well and we consider family.  Part of me wanted to go and cry with them, part of me wanted to never see anyone ever again...how would I face anyone?  Not much time passed and Dan got a call from the Eye Bank of NC. 

I had forgotten to mention that during the previous night while we sat in the hospital with Jacob our nurse Danielle came into our room several times to let us know that, yet again, the Eye Bank of NC had called and wanted to speak with us. We thought that was so strange. On one hand I was pissed, like "who do you think you are calling while my baby is still warm in my arms asking for his eyes???"  Is that what they wanted?"  On the other hand, my motherly side, I wondered if there was some poor baby out there than needed eyes desperately and our delay in communicating with these people was crushing some ounce of hope some other parents had somewhere, waiting for an answer.  Nurse Danielle had said that they had to enter his death into their computers and that somehow that is linked to some master computer somewhere or something and this tends to happen. She was not sure exactly why they were calling as they only wanted to speak to Dan or I and so she did her best to blow them off, time after time.  I say all this because as we made our way through the morning it was about 9:45 or 10 am when they called his cell phone and left a message.  We decided to call back just to get them off our backs and see what they wanted.  Dan made the call.  Okay, so they did not want his eyes (thank God because I am not sure if I could have given them away)  what they wanted to know was if we wanted to donate his heart valve.  It could be used to help another baby that either had a defective heart valve or some other ailment that actually could be fixed, they just work out of the Eye Bank.  She was very, very kind and Dan said he would discuss it with me and that we would call back.  Dan and I talked about it.  Could we do this?  What about those other parents out there that had some hope for their baby living and were actually waiting for a heart valve to be available?  What kind of agony were they in?  Knowing their child could be saved but at the expense of anothers' life?  I can't imagine that.  Knowing that they would go and pick Jacob up, drive him to Raleigh, take his heart valve, and return him safe and sound to the funeral home all in the same day, we decided we definitely wanted to do this.  What else could we do?  Maybe in some way, this was our opportunity for some good to come from his death, to give life to another and with that in mind neither of us wanted to do anything but help and give what we could.  That is what Jacob would have wanted, what I would want if it were me.  We had Rachel, Dan's sister, call her back and that phone call, to our shock, took almost an hour.  There were an enormous amount of questions that they had to ask, like if Dan or I smoked or took drugs, random questions but I guess all important information for the people who received the transplant.  There was limited time to do this, for them to get the valve, which is why she had called several times the night before.  I think it was someone else that had been calling and she apologized that they did not inform us then that they did not want his eyes.  We were not upset, just sort of happy in a weird way that we could do something good.  The arrangements were set and they would contact the funeral home and take it from there.  We expected to be getting a call from the funeral home as well to start making plans for his service.  

We had rented Tangled from Netflix and the kids had been watching it for about two weeks. I was grateful as I was SO tired at the end of the pregnancy, and grouchy.  Their interest in the movie over and over had given me some time to nap, rest and make it through the last days of the pregnancy.  I remember making the conscious decision NOT to listen to music for a while after he died because I knew it would make me think of Jacob, especially if a sad song came on and I knew I would not be able to handle it.  I didn't need to sink into any lower of a depression than I was probably going to be in naturally for a LONG time.  My goal was to stay sane that was my only goal.  But, with the movie on again, to give us time to start working through the things that needed to be done, I would hear this part of the movie over and over as the week dragged on and I will never forget it.  Mother Gothel, Rapunzel's mom, has this part that she sings over the magic flower and Rapunzel's hair that helps her to stay young and the song goes: 

Mother Gothel:
Flower, gleam and glow
Let your power shine
Make the clock reverse
Bring back what once was mine

What once was mine

Young Rapunzel:
Heal what has been hurt
Change the Fates' design
Save what has been lost
Bring back what once was mine

What once was mine

It kind of has eerie music in the background and then fades out.  I remember hearing that over and over all week and it's exactly how I felt... change the fate's design, save what has been lost, make the clock reverse, bring back what once was mine.  In the weirdest and most unlikely of ways it was very fitting. 

~~~~



The morning went on and I remember trying to stay busy. I did not want to be alone or in a quiet spot, didn't want any time to think or process, just wanted to be as normal as possible for Adam and Allie, that was the only thing that mattered to me at that point.  I am an only child and although most of the time my mother is very normal I have watched my mom battle bi-polar disorder at various times throughout my life. I have seen her manic four times in my life.  Most recently, it had happened twice in the last five years, during the same time that Dan's mom had been dying of cancer.  Three of those times I was the one to check her into the psychiatric ward, usually at 1 or 2 AM.  After she would go into the hospital they would pump her full of something to bring her back "down" and then it would be almost a year before she could work her way out of the depression that followed each hospitalization.  It was hard to watch; I'm sure much worse to live.  It was hard not having her to depend on during those times.  I would stop my life, go get her, or rather force her to go to the hospital, sit with her, help check her in, listen to her curse which is NOT my mom, and then leave her there in the midst of other crazy people.  Then I would go home and try to find bills that had gone unpaid, clean the tornado mess of a house that was a result of her mania for however long it had lasted till that point and try to encourage my dad to get some rest.  When someone gets manic, or when my mom does, she stops sleeping, so everyone around her stops also.  It's very difficult and so by living this with her as the child of a bi-polar parent, the LAST thing I wanted to do, the biggest fear of my adult life, was to end up like her, be that person that could not control her actions or emotions,  and put my kids through what I had been through.  It's not something she can/could control and I've come to learn and try to accept that.  But was Jacob's death the final straw for me...would I lose it?  I was not sure for once.  I didn't want Adam and Allie to see me like that, I didn't want to be like that.  I didn't want to fall apart for Dan or end up in a hospital with a bunch of crazy people.  Would I make it though the day, the night, the week?  It was my biggest fear and my only real goal....don't go crazy. 

The day pressed on...at some point the ladies at the church, and some of my dearest friends now, coordinated to come by later and bring food for us for the next few days. I had been the coordinator of our church Sisterhood group up until recently and had been the one to organize all the meals for those in our parish who either had just had babies, or were hospitalized for long periods of time for other ailments, but here I was on the receiving end of it and not because we had a new baby, because there was no baby.  They would come over later that night.  We made it through lunch, someone must have fed the kids, don't know if it was me, and it was 1 PM about time for Allie's nap. I think I put her down. It was a quiet moment. I had several with her that week.  Somehow she knew.  This little 18 month old baby that could barely talk, she looked deep in my eyes and threw her arms around me, hugged me and patted my back as if to say "it's okay mommy, it's okay"  How did she know? I guess the sad look on my face, the drained sleep deprived, exhausted look gave it away that something was not right, she didn't need an explanation, she just knew based on sight.  How could she, above most adults, be the most comforting of everyone?  No words, just love and speaking with her eyes and hugs.    These kids, they are smarter than we give them credit for. 

Now we just had to make it till Adam went down for a nap and then maybe we could get some more sleep.  Adam did not go down till about 2:30.  I knew that Allie would be up in about an hour, if we were lucky.  Maybe with my parents there and Rachel we could sneak away to rest.  Before I had the chance to make a sleep request and just as I was coming down from putting Adam down I remember my mom saying to Dan and I, "Well, your father and I are exhausted.  We didn't get much sleep last night so I think we're going to go back to the hotel for a while and take a nap."  Huh, I thought. I was too tired to throw a fit or be mad, I just remember this sinking feeling in my heart; they were leaving, because they were tired, they had not gotten much sleep, they needed a nap? WHAT? Did they see me? Did they look at me?  This was my own mother???? Could she not see how, more than any other moment in my life probably, I needed her help NOW?  Could they not suck it up till the evening when they could go back to an empty quiet hotel room? Obviously she could not and neither could my dad.  So my hope of sleep vanished....keep going I thought, fine, whatever. 

At some point I think during this long never ending day my parents also felt the need to interject their opposition to us donating Jacobs' heart valve and sadness at some point through the week that he had not been baptized?  Again, WHAT?  Some old superstition or church belief about the soul being in the heart.  It took me months before I could explain to my mother that what if it had been Adam or Allie that needed a heart valve?  What then?  Did we want them to die because the heart of another might still have some of that persons soul in it?  And so what if it did?  They would be giving our son or daughter a great great gift.  Why not have some of their soul pass onto them.  I would be okay with that as a mother of a dying child.  But to question our choice to donate his valve, less than 24 hours after he died, really?  And then the baptizing?  To my knowledge he did not have time to sin in the seconds he probably lived.  There was not much he could do inside of me and since I have read that, and this is from a Catholic priest, although I assume Orthodox would view it as the same, if you are of a certain christian faith and you plan to bring your unborn child up in that faith, then should that baby die before birth or at birth, they are, like a catechumen, considered Catholic or in our case Orthodox and already a member of the church.  But thanks mom and dad for making me question where my son is.  That he may be in some sort of jeopardy since we didn't splash some water on him.  And we do baptisms big in our family, big parties, we value baptism but Dan and I did not feel Jacob was in need of one.  He was truly innocent and pure as pure can be.  It was infuriating and more so because they were my parents and THEY were the ones that were inflicting unnecessary pain on Dan and I when we were so incapable of blowing it off as inappropriate or bad timing.  It was the worst timing.  I know they love me and that they did not realize what they were doing to us by sharing their opinions but it just did not feel loving at that particular time. 

So this mess of a day continued on, somehow we stayed awake till both kids got up from their naps. It was about 5:30 by then.  We thought it was weird that the funeral home had not called us to start discussing services so we decided to call them.  Dan did and we asked if Jacob was back yet.  They seemed very confused, "what do you mean?" they asked.  "Well, the doner bank was supposed to come and pick him up and said they would have him back by now?"  "What doner bank? Jacob has been here the whole time?"  So Dan and I were both confused and mad....he got off the phone and we immediately called the person we'd spent almost an hour giving our total health history to just earlier that day, we were mad.  "What happened?  She said she was so sorry the funeral home did not explain what had happened to us.  They did come, all the way from Raleigh to pick up Jacob but when they arrived at the funeral home they could not take him.  Apparently, and she was sorry to be the one to inform us, but they had left Jacob in a 64 degree room from the time they brought him back there until this transport had arrived to pick him up.  Now the anger was insane.  They did WHAT!   For them to be able to use his valve he had to be kept very cold and it had to be extracted within 24 hours of his death.  Having been in a 64 degree room, negated any chance they could use his heart valve for another.  This was the biggest funeral home chain in the Triad and they did WHAT?!?!  Did we need to explain to them that since we didn't want him embalmed and that we had not decided on services that he needed to be in a COLD ROOM or a cooler????  Is that not standard for those that are not embalmed? And they said nothing to us when we called them to start the process of scheduling services or whatever for Jacob?  We apologized to the nice lady and told her we were so sorry that all that had happened. She was sorry for us.  I later wrote her a thank you note for all she did and said how sorry we were that we were not able to do this one good thing in light of losing Jacob.  With the end of that phone call I went into SUPER mama bear mode.  I was PISSED.  My baby had been left, in a room, not a cooler, they took away our only chance to do something good for another baby, took this gift away from some baby out there somewhere and that baby's parents somewhere, all because they were too tired to put him in the cooler when they got there and then they didn't have the guts to tell us?  We went into recon mode and although Dan had not thought of it before we actually knew of someone at Vogler and Sons Funeral Home that might be able to help us.  All I wanted at that point was to rip my baby out of their hands, kill them all, and get him to Vogler and Sons where I knew they would take good care of our son. We called them back, they stammered to explain why they had done what they had done which I think changed a few times based on who we talked to, even more infuriating. We told them we would be moving Jacob and that Vogler and Sons would be picking him up shortly, we were infuriated and expected so much more.  Our friend, who is now an Orthodox Priest, Fr. Andrew,  worked at Vogler's at the time and organized for them to come and get Jacob and bring him to their facility which was also close to us and they would indeed put him in a cooler. We could come in the next day to discuss the arrangements and to see and hold him. 

With that, the night started to begin and the ladies came with what looked to me like the entire inventory of Costco.  They not only had a meal for us that night, but also for the next few nights, snacks, plates, silverware, tissues, a few cases of good beer for Dan, bottles of wine for me and a BIG thing of Ghirardelli assorted chocolates which were a saving grace for me over the next month....even in despair I savor good chocolate...I have no idea how much all of that cost, but they did it, all for us and out of pure love.  We didn't have to ask for any of it, they didn't wait for us to ask they just did.  It was a great feeling of love that we needed so badly that day.  

At some point I think I posted what had happened on Facebook so others would know.  I thought that many would think that because we are "those people" that home birth,  they would first think that Jacob had died because we were ignorant and had stayed at home. I didn't want anyone to get the wrong idea.  I mean he would have died at home  if he'd been born there but not BECAUSE he was born there.  Not in this situation. If he'd been born in the most high tech hospital in the world there is nothing they could have done.  He was not meant for this earth, he was Heaven bound.  We also started discussing plans for his services, what services were available, this was all hard to find.  Fr. Christopher I'm sure made many calls that day to get answers.  Where would we bury him?  The one thing we knew, probably from the moment Jacob died, was that Dan would make his coffin.  What a great thing to be able to do for you own son, and what a horrible thing to need to make for your own child.  He'd made his mothers and now would be making one for Jacob, but that would start tomorrow....we didn't have to start that today.

We got the kids to bed somehow.  By this point I was dreading sleep.  I could start to feel my milk coming in, my baby was gone, what would happen when I had time to think. All these things that had happened had been distractions from thinking about the reality all day.  Even the discussion that Dan would, tomorrow, begin making our own son's coffin.  All of that could not continue into and through the night...there had to be quiet, I had to rest but how would I fall asleep?  I was terrified and as soon as we made it to bed, the flood gates that I had managed to keep together all day came crashing down.  I       was       a    mess.  The feeling of Jacob not being in my arms and being dead and far away from me, it was too much to bear, but I had no choice in the matter.  I was angry and sad and scared I would lose the rest of my family, I mean why not?  I had never thought a child of mine would die, what if I lost everyone else? I was not special.  Every emotion you can think of I felt like I had and it was all coming out, in fact, for a change it all could not come out at once there was just too much.  Dan held me on the bathroom floor as I sobbed. The time was growing further away from the night before when we could hold him and closer to the time when we'd eventually bury him forever.  It was pure agony and defeat.  Somehow I fell asleep, somehow, and then finally that day was done too.  I had survived but barely.