A few days ago, Ryan (my son) and I began a series of texts – apparently we are unable to call each other on the phone anymore … I have included them verbatim – which is probably not the wisest choice I have made in a long time ... blogging about this also seems unwise … but feels right – if that makes any sense?
The Texts:
Ryan: “Would it be alright if I got genetic counseling if insurance covers it?”
Lori: (after my heartbeat slows to something that will enable me to type on my Blackberry keyboard without shaking so much that I miss the letters) “Why?”
Ryan: “To see if I have mutant sperm.”
Lori: “Dude … you don’t have mutant sperm. Dad checked out. I checked out. Um … is there a reason why you want to do this right now? I don’t think that insurance pays for it …”
Ryan: “I’m in a child development class now, went over all the disorders that can occur. And testing has gotten better, but if insurance doesn’t pay for it that’s cool …”
Lori: “Give me a minute … I am just FREAKED since generally someone doesn’t worry or think about that UNTIL THEY ARE PLANNING ON HAVING A BABY OR ONE IS ALREADY ON THE WAY …”
Ryan: “There is no baby on the way -__- I just wanna get checked out while I am on Dads super insurance, as opposed to me being older in the Mad Max America we are heading into …”
Lori: “OK, my computer just vomited blood all over the desk & I got a little distracted – go to xxinsurancecompanyxx.com and login. Check to see if it is covered.”
Side note – that ‘vomiting blood all over the desk’ ? Yeah, that was my 6TB external drive exhaling its final death rattle ...
A day later:
Ryan: “Genetic counseling is only covered for people who have a medical necessity … and having a family with a history of mental retardation & congenital issues certifies me for it …”
Lori: “Great!”
Yesterday:
Ryan: “OK, so I called the genetics people and they would like to see the report for Rachael if one exists …”
Lori: “I will try to find the report on Rachael”
Today:
Ryan: “Any luck with the medical records?”
And so it begins …
going back to the past in order to move forward into the future …
There is a box – I call it (not surprisingly): Rachaels' Box. In it is everything I saved from that time of my life pertaining to her. I cannot really remember what is in it. Threw everything in a box and shoved it under a bed. Moved to Norway and it went into storage for two years. Came home, unpacked it and shoved it in Jessie’s closet. And there it sat for years – ignored and forgotten … just a foggy memory in the back of my mind.
That is until yesterday when it came clearly into focus. But I was not ready to delve into the past, so I ignored Ryan’s request and did nothing.
I wonder if I have a report on Rachael’s chromosomal anomalies - partial trisomy 10 & partial monosomy 4 - both rare and never seen as a combination before. I text Ryan back that I might not have the report, but know I have her autopsy report and that might mention her chromosomal defects in the intro part of the … person being autopsied.
And suddenly I am back there – at the hospital, shaking, LIVID, arguing with the hospital personnel. For the autopsy, she needed to be transferred to the hospital where the doctors who would perform the autopsy worked. The hospital administrator had told me that was fine, but the hospital would not pay for it. It required a transfer by an ambulance up the street a whole two blocks and was going to cost us personally a bundle. My mom asked if she could just carry her up the street? They said no that it was illegal to transport a deceased person unless you had a permit. The entire dilemma seemed so absurd that in the midst of all the sorrow and pain, a sense of unreality crept in and I felt like I was in some sort of nightmare that I just couldn’t wake up from …
Like I wanted my baby to be autopsied! I was not doing this for me, or her … I was doing it for the specialists who followed her so closely while I was pregnant so they could see how well they were at diagnosing and predicting things using only an ultrasound back then. They had asked me if I wouldn't mind - that it would be so helpful for them. As much as I didn't want my baby autopsied, I had said yes – but suddenly it didn’t sound like such a good plan.
After Rachael was diagnosed she had the geneticists scratching their heads having not seen her anomalies before. And soon there were specialists all wanting a piece of Rachael – to study her, to follow her progress and things became a little … well, bizarre. She was not Rachael to them – she was an anomaly, something out of the ordinary, a curiosity - a fetus to be studied. To me - she was my precious, broken Rachael. Our views of my baby couldn’t have been more different.
The geneticist approached me and asked if he could follow her and if I would come in regularly for testing and examinations. I asked him why. He told me because it was so rare! What an opportunity to study the progress! A new and curious mystery for him. “Would it help other babies in the future?” was my only question. Well, no he said – but he would be writing articles about it! His study of her would be published in all the best medical journals!
I told him "Thanks, but no".
The heart specialist that had been brought in after it was discovered that Rachael had a lethal heart defect also asked if she could follow me – which meant appointments with her so that she could do ultrasounds periodically to watch the progress and growth of the heart. Again, I asked: “Would it help other babies in the future?” She said yes – that she thought that in a baby who had no other problems but this particular kind of heart defect (Rachael also did not have kidneys - it was a given that she was going to die) she could probably successfully repair the defect. She said that to do that, though – it would have to be an emergency operation as soon as the baby was born and that all knowledge gained before the birth gave the baby that much more of a chance of surviving the operation. Thus studying Rachael and her progression helped her become more knowledgeable in how to prepare for such an event.
I told her yes.
I believe there was one more specialist that followed me, but that time is a bit fuzzy and I might be thinking of my high-risk obstetrician who was also following her.
Thus the request from the doctors to do an autopsy – to verify their findings and what they had seen at all the appointments I had gone to for them to do ultrasounds. To see how close they were in their diagnosis, to physically see what they had only been seeing on a blurry ultrasound. Seemed like a a good reason to give consent for an autopsy at the time ....
So, there I was, standing in the hospital, livid that I would have to pay to transport my baby to another hospital for an autopsy I didn’t want in the first place. Someone called someone else, or the hospital realized why this was being done and all of a sudden we didn’t need to pay for it anymore – it was being taken care of. I don’t remember now who paid – I just remember the absurdity of it all …
Update: as I am proof reading this it suddenly occurred to me - I remember now who paid for the transportation of my baby. It was the funeral home. We had made arrangements for a funeral and interment that included them picking her up and transporting her to the funeral home. Why they would drive all the way to the medical center to move her two blocks, then come back a day later to get her and take her to the funeral home is a mystery to me - as was how they knew about it in the first place? The kindness of strangers was never more apparent than during this time ...
And just as quickly as I had fallen down the rabbits hole into another place and time … I am back in the here and now. Back with …
THE BOX.
I sigh and get up. It was time. Time to go upstairs, get down the box and immerse myself in a different place and time. In search for a piece of paper – for Ryan. And for THAT reason – I didn’t hesitate, and headed upstairs.
I open the door to Jessie's closet, looked up, and there it was - nestled between a container full of whimsical seasonal decorations and a container of folding storage containers:
I could actually reach it! Got it down and took off the lid.
Immediately I smiled! Who wouldn't? Not wanting to crush or bend them in any way, on the top of everything else were some 14x11 prints:
My sister in law, when she came down to the funeral, brought this print in a beautiful matted frame for me. I had never seen it before. Jessie immediately upon seeing it had said "Its Jesus!". And Ryan on seeing it told me that it was a picture of Rachael with Jesus. It was something we all needed and has been displayed in every home we have lived in ever since.
We displayed it during the funeral and right as the funeral was to start - Ryan turned to Gary and I and asked why he didn't get to see Rachael to say goodbye to her. It was a difficult question to answer, I had promised him that I would never lie to him when he started to ask me very difficult questions a few months earlier - I have kept that promise to this day. But Rachael having congenital defects did not look great, thus a closed casket. I was in a quandary. Then I remembered:
"Do you remember what you said to me when you saw the picture Aunt Cherri gave us?"
"Yes"
"And what did you say?"
"I said that was Rachael with Jesus."
"Right! We can stop the funeral right now and I can take you to the back where it is so you can look at it again if you want to. And you can say 'Goodbye' to Rachael there. We can even bring it back with us and you and I can hold it so you can look at it and see her through the whole funeral. Would you like to do that?"
"No, it's OK."
And the funeral began again, me having kept my promise ...
A month later, I decided that I wanted this photo laser etched onto Rachael's marker, so I spent hours scouring the internet for Jean Keaton - the name that is signed on the bottom right of the print. And miracles of miracles (literally) her home telephone number landed in my lap and I called her to ask her permission to reproduce it onto Rachaels marker.
She was so kind. Asked me many questions, wanted to hear my story. She said that she'd had a few requests like this and always wanted to know the story before she made her decision. She was wonderful - we laughed and cried together for hours on the phone (multiple calls). She asked me one day if she could use my story - she spoke often at devotionals and I said yes. She, in turn told me that I could use her artwork and what was my address - she wanted to send me something. Curious, I gave it to her and then forgot about it.
One day a few weeks later a package arrived in the mail from her with a copy of each of her most famous prints. This one was included - with the hand signed message and a resigning of her name:
Years later, my parents were on a mission working in a mission office with another couple. The Sister had told my mother that her daughter was an artist and showed her some of her artwork. It was Jean Keaton's mother! So my mother told her the story of Rachaels marker. Her mother knew me! This surprised my mother (and then me) and said that Jean did speak often all around the country and did use my story. Jean also sent me a beautiful note thanking me for letting her share my story (most of which I probably don't even remember!). It always seemed so odd - I felt as if I was the one that should be thanking her ...
I gently placed the prints down and started pulling out other things - the hospital outfit, photos, extra thank you cards we had sent out later ...
And then, there it was! The absolutely, stunningly beautiful dress that Rachael was buried in. Confusing? I know - let me explain.
One day after finding out Rachael was going to die soon after she was born, I called my mother and asked her how in the world I could ask my sister to make me a dress to bury my daughter in? Jodi, my sister, is an amazing seamstress and I knew she could do it, but how do you ask someone to do that? In addition - I was not sure what size she was going to be so it needed it to be adjustable. My mother told me that 'you just ask' ... that Jodi would be honored, would not feel uncomfortable in the least, and would tell me if she didn't have the time or the know how to do it (hah! my mother had apparently forgotten who she was talking about - my sister can literally do the impossible if she puts her mind to it).
So I made the call. And, of course, she said yes. What she did not tell me was that she was going to make two identical dresses - so that I would be able to have 'Rachaels dress'. I was speechless at the kindness and generosity. I will cherish it forever:
It is stunningly beautiful and the detail is amazing:
From the lace on the sleeves:
To the adorable heart lace on her bloomers:
The pretty little bow with streamers and the lace behind it:
The dress skirt consist of three layers - a white tricot slip layer, a lace layer and the top layer with bows that gather - and are adjustable - you can make the dress longer or shorter depending on how you pull just a few strings on the dress. She had other ways to adjust it also, but it fit perfectly ...
The perfect stitching, the lace, the silky fabric, the beautiful pink flowers - all combined into a beautiful dress filled to the brim with love, happiness, peace and joy. I simply cannot look at this dress without feeling the peace that comes from knowing that there are people in this world who love you so much that they would do literally anything for you. It is truly a magical dress!
You would think that looking at the duplicate of the dress that my baby was buried in would in some ways make me feel sad, but - no - there is no room for that. It is just too beautiful not to make me feel loved, at peace and happy!
*sigh*
With the beautiful stuff out of the way - now comes the paperwork - the mundane, the detailed, the sad, scary, ugly stuff ...
And right off the bat I pick up a lab report from the Cytogenetics Laboratory and I am so thrilled! I can stop! I have a report! Joy!
I turn the page and I marvel that I am actually looking at my daughters chromosomes ...
... until I notice the Patient Name: Hurst, Lori.
Oh, yeah - after Rachael was tested, Gary and I were tested also to see if there was something wrong with either of us that could have caused this. We were both given a clean bill of health and I realized that I was looking at MY OWN chromosomes:
Pick up another official looking report and suddenly I am down the rabbit hole again. It is the initial ultrasound report. I see the date: October 10th, 1996. Hmmmm, I had forgotten the day.
I remember the DAY day - just not the date. I actually wrote about the entire experience of this day years ago. I ran across it a year or so ago and posted it here on my blog. The post is titled 'The Beginning of the End' and is HERE.
October 6th, 1996 ...
One day I went in for an ultrasound with a high-risk doctor ... just as I had done with Ryan, due to the fact that I had a mentally retarded daughter. Gary was out of town, Jessie was at school, Ryan was being watched by a friend, I was sick and tired as I am when pregnant - especially after getting ill (and staying ill) in 1992, there was no clean underwear in the house, it looked like a hurricane had hit in most every room of the house and my mom was bothering me to call her 'right away' with the results. I was tired, harried, sick and not paying much attention.
And with one sentence, one TINY LITTLE SENTENCE ... my entire world changed forever. The doctor had come in after the tech had run some initial scans, puts the ultrasound thingy on my stomach and immediately said:
"Somethings not right here."
He continued on with his devastating monologue for an hour and a half - detailing every anomaly, every problem, there was very little amniotic fluid - which in addition to making it very uncomfortable for me - meant that Rachaels kidneys were not functioning properly, looking closer - he cannot find kidneys. I remember thinking in my head ... like a mantra (with my heart racing and more scared than I had ever been) "dialysis, donors, this is doable ...". He keeps it up - coldly documenting everything as he went. This is fine with me - I want to know the truth - give it to me straight ... and that is what I was getting.
And then he said: "I see a nuchal thickening on the back of the neck."
"Is that a problem?" I ask.
"Yes", he says "it is a very strong indicator that there is a chromosomal defect."
And just like that, my entire world shattered into a million pieces ...
On that day - October 10th, 1996 - and here I was, holding in my hands the hard document that shattered my life so badly, that I seem to still be picking up the pieces ...
I mentally pull myself out of the rabbits hole just to be thrust into yet another:
I pick up a folded piece of paper with something embedded in the fold. It is the words to a song, and Rachaels funeral program:
Don't remember who the words to the song were directed at, or why I had bothered to type them up ... I suspect that I was thinking of Gary.
There is a box of photos in the big box and KNOWING there was next to no chance that I was going to find the elusive report I was looking for there, I opened it anyway:
Nope - no autopsy report here ...
I empty the contents of a folder and this is on top. I smile. This is the diagram that the cardiologist used to show me how she would fix the particular type of defect Rachael had on another child. I had no idea I had it. I'd like to think that by now, she had saved a number of babies - operating on hearts smaller than a walnut! And maybe ... just maybe ... studying Rachael for that time helped her help them in some way ...
I marvel at the sheer amount of stuff that I have kept! I must not have thrown anything away ...
On the back of the papers from the cardiologist is some handwritten notes in writing that I can tell is mine - but barely. A hurried scrawl, probably nervous, confused - it would be interesting to see what a hand writing expert had to say about it!
I see the names of Dr. Carpenter, Dr. Eyres, Dr Abereio, Dr Adams, and a Weisman - a doctor? Probably - I was seeing a grundle of them. There are appointment times and directions and the disorganization of all this information and the sheer amount of info dumped here on the backside of a piece of paper brings back the overwhelming feelings of ineptitude, confusion and failure. Days filled with illness, taking care of Jessie and Ryan the best I could in between appointments and the nights filled with sheer terror at what I knew was coming. I SO wanted to have the strength to do this ... gracefully. I spent many nights crying into our Boxers (Chance) fur and he would lie there patiently - just us - in my sick room. My own bedroom the doctors suggested and we set up after I got so ill - so that I would not be woken up by Jessie who averaged getting up between 5 - 9 times a night EVERY night - for at least 12 - 13 years.
Didn't accomplish that 'graceful' goal ...
My pile is getting bigger and I have depleted my stash. I KNOW I have her autopsy report because I read the entire thing. We had a summary, but I asked them to please send me the entire report. They told me that was generally not done, so I asked if it was not allowed or was there a problem with it. The sheepishly said no, but generally parents didn't want to see it. I told them that I was not 'most parents' and please sent me one. They said they would. I remember it being very thick ...
I see a certificate ... and sigh. It is probably the only tangible evidence in this box that my baby ever existed ... her footprint:
I refile that somewhere else - increasing the importance of the document to a much higher status by putting it in another folder. There does seem to be a bit of a method to my madness at the time (and I DO mean madness ...). Everything seemed to have been assigned a place in a hierarchy of importance and I was messing it all up!
Suddenly, I stumble on another pile nested inside a baby magazine. And I see my notes! My notes! I CANNOT believe that I saved them. When the autopsy arrived, and I was ready, I began to read and quickly realized that if I did not have a medical degree or know Latin fluently I was in trouble. So I got out our trusty dictionary - this was early web days and we did not have a laptop at the time and I had locked myself in our master bedroom so the kids would not bother me - and started looking words up. A LOT of words! And read the entire thing.
Did I want to? No, but I felt like I owed it to Rachael since I had told them that they could do one. Illogical reasoning, and TMI for sure, but I felt I needed to do it.
I was encouraged ... if I STILL HAVE MY NOTES from reading the autopsy ... logic would dictate that the actual autopsy is here ... somewhere ... right?
I had reached the bottom of the box - literally:
I had our hospital wrist bands for heavens sake! I HAD TO HAVE HER AUTOPSY REPORT!
And sure enough, I went through a pile I had already been through and hit the mother lode. Not the autopsy - but a summary of the autopsy - I WAS SO CLOSE!
And sure enough - right underneath it was the autopsy itself:
It was rather thick - I cannot believe that I had missed it. And *yeah!* it documented the fact that she had chromosomal abnormalities. My walk / fall / stumble down memory lane was not entirely in vain!!!
Oh, but what is this - right under the autopsy report?
A closer look and I realize that I HAVE HIT THE MOTHER LOAD!!! It is the actual report of the amniotic testing that discovered the chromosomal abnormalities! Whoo Hoo! JUST what I need! AND the added bonus that I don't have to send my son an autopsy report - just a report on chromosomes ...
And on official letterhead - so no issues on credibility. The insurance company would get their document, my son would get his testing and hope of all the hope a mother can have for a son - he gets the peace of mind that he is fine ...
And there it is ... a diagram of my Rachaels chromosome 10 and 4 and the translocation of a piece of 4 onto 10 ... all in a happy blue and green:
Well, I am done! I collect Rachaels report, the autopsy summary and the report on my chromosomal test - and Gary's and put them aside, not wanting to accidentally put them away again and have to start over.
They look so out of place with my happy little house:
I turn around and there it is - the sum total of Rachaels existence. More that I thought that I had, a lot of beautiful letters and cards, stuff that I had written and photos ... not to mention THAT DRESS! And I decide that it is not so shabby ...
It is enough ...
I start to put everything away - trying for how I had it, but ending up just shoving things in folders - I mean, when would I ever need to get back in here and find something again?
Finally, I get to the dress, my beautiful babies beautiful dress. I gently begin to fold it and suddenly I realize that I had forgotten the back! How could I POSSIBLY forget the back? See how beautiful the back is:
Pretty little pearl buttons with pretty little elastic loops to hook them in place.
And, again, I am taken aback by the sheer beauty of the thing. I smile, fold the dress, put it in an air tight ziploc bag and seal it up again for how long ...
who knows?
Put the lid on the container, go in Jessie's closet and put it back on the shelf.
I turn around, leave the closet and turn out the light.
Then, suddenly, I turn back around - step back into the dim closet, look up and whisper "Bye baby, love you ..."
And then I quietly turn and shut the door ...
