here is a speech I wrote for the local 40 days for life group. I'm sorry for any typos- it was a speech so I wasn't careful about typing mess ups. I should probably edit it but I've got so much going on! I'm just going to post it and hope the message shines through the poor grammar, language usage, and typing.
Holy Spirit- guide me
Even before conceiving jedidiah, my husband and I were not strangers to crisis pregnancy. Our first was born in what would have been the first semester of our junior year of college. We were 20 and not married and while telling my parents was possibly the hardest thing we had to do that year, we were prepared to take that step together.
A very close friend of mine came to me privately and said she admired me for coming forward, claiming the pregnancy, and accepting all that surrounded it. Her own parents were much like mine- devout old school Catholics. She was raped and became pregnant and got an abortion for fear of her parents reaction. She went on to say she regretted that decision every day of her life. I knew that while we weren't married- that we wanted to be. Even before our first was conceived we secretly planned eloping- like I said, my parents are old school Catholic and he was raised Protestant. Despite these road blocks we envisioned a full life together for us both. We were encouraged to think of adoption- which we did purely out of obedience. In my godmothers office at birth rite I remember thinking "what would we tell his/her younger siblings?"--- "you have an older brother/sister that we gave up"? I told Chris later about my thoughts and he admitted to thinking the same. While we knew adoption was a courageous journey for some, it was not how we wanted to begin our family.
Fast forward 12 years. We had been married for almost as long- and that first child now had 5 younger siblings with a 6th on the way. We were surprised and excited about the new life God was adding to our house. Our bright and shiny excitement changed the Tuesday after a nice Memorial Day weekend 2010. I remember that whole day as if it was yesterday. While I cooked breakfast I got a text from Chris's best friend dave-saying they had their first baby 6-7 weeks early. He said mom was fine but their baby girl was in ICU. I had an ultrasound scheduled close to Chris's lunch break later that day but I told chris to use the break to visit his shell shocked friend instead. He said he would. As i unloaded the kids from the van at the midwifes office i was surprised to see chris drive into the parking lot. He told me his friend would appreciate a visit tomorrow. The ultrasound room was small so Chris sat with the kids in the waiting room while I went back on my own. I walked into that room thinking, "gee, I hope that my placenta is in the right place, and I hope to have patience and wait to be surprised by the gender at the birth!". Never in my wildest dreams did I imagine what they would find. After an initial scan included some poor findings I stopped them and asked for my husband. He left the little ones in the waiting room watching Jerry Seinfelds cartoon "bee movie" and came back. All we learned was that there was something wrong with the brain and also the baby had a cleft palate. they claimed not to know fully what exactly was wrong because their ultrasound machine wasn't the best. We left with an appointment made for the following day for a perinatologist and a higher resolution machine. Our oldest had soccer practice that day and I had the younger ones at a playground waiting it out. I remember walking around the playground and calling a la leche league friend of mine- trying to pick her brain about nursing a baby with cleft palate. My ability to hold myself in denial kept me from even worrying about the brain.
The next day's appointment shattered my comfortable denial pretty soundly.
The ultrasound room at the perinatologist was very large cold and quiet. A wide flat screened tv monitor was suspended on the wall to my right. The technician was smooth and efficient. Taking a long time over each organ. I remember seeing yawning black spaces in our babies brain. I still wasn't sure what all it meant. Reality hit when the black and white fuzzy pictures disappeared and a a list of data fields began glowing from the screen instead. It felt like we weren't meant to be seeing this portion- I felt like maybe ordinarily they turn off the screen during this time- because in all my previous ultrasounds I never remembered seeing this information collected and filled out live. Each field had a drop down menu. And field after field the technician chose "abnormal" for an entry. I recall kidneys being the only "normal" part of our baby.
The perinatologist came and I first heard the words "incompatible with life" from her lips. She didn't come right out and blatantly suggest abortion but between the lines it was pretty clear what she was suggesting. She mentioned two terms- Alobar holoprosencephaly and tetrology of fallot.
As we drove away from the appointment I thought "we have a legitimate reason for aborting- for the second time in our lives from the perspective of the world- we would be supported in aborting this baby." I thought of my close friend, of how her life fell to pieces after her abortion. About how the only comfort on this earth for her is found when she turns to God. But also how her then boyfriend and now husband-who had supported her through an abortion for a rape he didn't commit- i thought about how he sought comfort in substance abuse and the arms of other women. i thought about a few other women who I had met over the years- who deeply regretted their abortion or were emotionally shut off from the effects of their abortion. I thought how easily the dr insinuated that an abortion would be easier. The more I thought about it I found it to be such a ploy. There is no shortcut through grief. There is no magic salve that numbs the nerves to the pain of losing a baby.
The perinatologist had picked up on our commitment to carry to term and had scheduled a few separate follow ups with a neurologist and a cardiologist to get better opinions.
The next morning I realized I didn't want more opinions. I tried to call the neurologist to cancel but found that when the front desk guy answered the phone I couldn't talk. I was mildly choking on tears while he repeated "hello?, hello? Helllllll-ooooo?" I finally started sobbing at the last hello and hung up. I called a friend and cried. She asked what she could do. I responded "could you cancel for me?"
Here is where we get to the heart of why I am here. How to support a woman with a poor prenatal diagnosis. I have to preface this portion of my talk by saying that every woman, every diagnosis, every family affected is different. The needs of each will require different words, actions, and methods of support. All I am telling you this morning is what worked with me- my specific situation, my diagnosis, my family.
Early on I turned to family and friends to handle some of the practical things for me. Not knowing what a hour into the future was going to hold was very trying. Extremely trying. But I learned to navigate it.
My friend Elaine- who canceled the neurologist appointment for me took on other difficult tasks- calling and interviewing the steward at the burial grounds we wanted for jedidiah. I had another friend go take pictures of several plots so we could choose from the comfort of our home. I had my sister who not only supported me by watching my kids while I was at appointments, her kids offered my kids support just by being with them. Indeed two families that were friends with my kids seemed to disappear during jedidiahs pregnancy- later they admitted that it was too painful to explain to their kids that our baby was going to die so they distanced themselves for about a year.
My sister also put together a care calendar to coordinate who was making meals for us- after jedidiah was born my family was fed 3x a week for about two months. Another sister who was extremely helpful- cooked meals and brought them over during my pregnancy. Chris's best-friend Dave, who had alot on his plate with a premature baby called up and elicited the help of a cleaning service. They came to our house one day and cleaned. My sister came over and cleaned quite a few times. cleaning is not my strongest gift and while i was pregnant it seemed that all the practical every day chores of ringing up a family seemed to be so suffocating. I remember thinking- do the kids HAVE to be hungry three times a day? does my house HAVE to be clean? Does the laundry really NEED washing? my church family, the prolife ministry, and the knights of Columbus gathered funds together and gave us some gift cards to eleviate any financial worries we were having. Soon after the diagnosis My friend elaine- who canceled the neuro appointment suggested a peer support group called be not afraid. Elaines friend in Charlotte worked with them and found them to be so very comprehensive in their care.
I called them pretty soon after and established a relationship with tracy winsor. While I had family and friends lightening my load in a practical way- BNA turned out to be such an invaluable resource of support for me. As loving and as kind as my family and friends were- they simply could not be that kind of support. The peer support Tracy gave was enriched by her own set of circumstances- she herself was a mom who had experienced infant loss. not only that she had been trained by the experiences of other moms as she counseled them through various diagnoses.
She offered support in a more intimate way. I was able to call and just throw down my thoughts and emotions and not only be heard- but be counseled. We were not very hindered by our geographical distance- a phone call was often all I needed. I remember one call in particular - I was on my way home from chemistry lab and was alone with my thoughts. They got to be too much for just me to handle so I decided to call up an old friend from when we lived in San Diego. She asked me how I was doing and I quickly shot back "okay" which wasn't true but seemed like the standard response to that question.
She read it at face value and proceeded to complain for the last half of my hour ride home about how her day had been so stressful. How she had driven all over san Diego looking for Irish dancing shoes for her kids and either couldn't find the right ones, or could find them, but in the wrong size. She ended the call suddenly when her child needed attention after a stumble.
I was left alone in the car thinking- really?!?! Irish dancing shoes?!?!
I immediately called Tracy and just cried about my friend. She said something that was so helpful to me. "It's normal. It's sad, but normal". Then she proceeded to help me navigate the situation. She asked me if I valued my relationship with my San Diego friend. Yes, I did. Then she suggested I call her back or email her or whatever and tell her that she needed to be there for me- tell her that I was going through an experience that would shape me and change me into a new person and that If she couldn't be there for me during that time, that she wouldn't know me on the other side. That our friendship would be flimsy at best.
I did contact my friend- and she responded beautifully- she said she was sorry and admitted thinking that I maybe wanted to get my mind off things which is why she went on about the shoes. We are still close friends who keep contact on both the superficial and the deeper matters of life.
Another call I remember in particular was made from the lake house my family rented for vacation the summer of jedidiahs pregnancy. We had just had an ultrasound at the perinatologist a office and I had the ultrasound tech put the gender on paper and seal it up in an envelope. We took it to the Kroger by the lake house and ordered a cake to be made. The outside of the cake would be plain brown chocolate icing. But the inner middle layer was to be either pink or blue depending on the contents of the envelope. I was even going to be surprised. It became too much to anticipate for me, I think. I called Tracy crying and telling her about the cake and everyone elses excitement but how i wasnt so exicted. I was soon going to learn if it was a son or a daughter I was going to say goodbye to and it was too much to bear.
She comforted me telling me about how this will be a story that our child was going to take to heaven with him. About how this baby will share how his family celebrated him-we celebrated him with cake!
She was extremely helpful in calming my nerves whenever they seemed to get too hot.
I do have to include a statement or two about what did NOT work. Things people did or said that thought they were trying to help- ended up hurting.
I remember a woman at church saying "well- maybe the ultrasound is wrong. Heck, my daughter was supposed to be a boy based on an ultrasound" I know she was trying to be a comfortf. But it felt more like a dismissal and it wasn't helpful at all. When she said this we had already gotten quite a few high definition ultrasounds and knew that it wasn't merely a matter so small to be compared to apparent gender differences.
We soon after had a fetal echo done- with a few very skilled drs my sister- our pediatrician referred us to. I specifically remember during the ultrasound there were two techs and they did echoes on kids and unborn babies for a living. They couldn't recognize much of jedidiahs heart. There were some anatomical aspects that simply were unrecognizeable. During the consult following the echo we sat with two cardiologists. They told us about the various problems. One being that his blood flow during pregnancy was adequate. There is a bypass that the fetal heart has- since i sent oxygenated blood directly into his system his heart didn't need to send blood to the lungs for oxygenation. But once babies are born- the switch flips- within 24 hours they bypass disappears and blood is then sent to the lungs. I recorded the conversation we had with the specialists after the looked at the images and shared it with my sister. She discussed with me how that even in an otherwise perfectly healthy child - the combo of things wrong with his heart was a monumental challenge. She suggested I tour the heart surgery center at children's and see first hand exactly how the kids need to recover from even the simplest of heart surgeries. I never did this but I became thoughtful over her words. It was impressed upon me through various experiences and tests that jedidiah simply was too fragile to haul through surgery. I began to worry that if we were to pursue extraordinary medical intervention that he would have a life(who knew how long- minutes? hours? days? months? full of beeps, machines, intervention after intervention- forestalling the inevitable. And those would be moments lost to us as a family. I sometimes would think- what would I rather? A child live for a month and not be able to hold him- and he would only know the feeling of an isolet. or a child live for a week or a few days and only know the feel of our arms about him?
During his pregnancy i'd entertain fearful thoughts- that I'd hand him over to get a cat scan and he'd die in that enormous cold tube so utterly alone.
Or we'd send him in for surgery and he'd die on the table surrounded by strangers- with us so far away in another room surrounded by family.
I also knew enough about trisomy that I considered every moment of pregnancy a gift. I knew that I could miscarry at any time- and I borrowed a stethoscope from my sister so when I woke at night and was alone with my wonderings and worries- I could be lulled back to sleep by the rhythm of his heart and the knowledge that he was still there.
He hung in there. For more than 41 weeks he stayed safe inside. I waited. I let him choose his birthday- it seemed fitting. What was yet One more unknown that I could just hand over to God?
So the day came and I have to say it was the hardest labor- not physically Not physically at all. But emotionally. He had done so well inside that I felt delivering him was the beginning of the end.
So many people gathered in the waiting room. Family mostly. Our parish priest came to assist my brother in baptism and confirmation.
He arrived and I honestly can't tell you all how many minutes it took for him to breathe. He turned dark. And I just held him and was so thankful he was born alive and I could feel his warmth against me. I spoke to him. Encouraged him to breathe. They threw a drape over me and we stayed there- I'm not even sure how many medical people were in the room it was all so silent. Finally he breathed and made little meowing/squawking sounds. My brother and our priest conferred the sacraments even before we cut the umbillical cord.
The kids came in afterward to visit their brother. My parents came in.
After they all left I was just finishing my first meal all day when he stopped breathing. We worked him back to breathing and then started to breathe again ourselves.
Later on in the night when we were speaking with the nurse in our room- he stopped breathing again. Chris was holding him and had an oxygen mask near his face. the nurse asked for the oxygen and I was shocked when she shelved it. Just put it up on the shelf and watched him and did absolutely nothing. I tol Chris to give the baby to me- I flicked his feet and rubbed his head to arouse him and finally encouraged him to breathe again- no thanks to the nurse.
The next day they put him in the computer. So all that first night nobody was checking his vitals- no nurse was questioning about how many wet diapers. Actually- he didn't have any diapers bc they hadn't brought us any.
We found out the reason for their behavior. When I was pregnant I spoke to my obgyn about how we didn't want to go wild with medical superman syndrome. We knew what we were up against- his extreme fragility- and we wanted to do what we could in simple measures to make his life easier. So my doctor took this to the hospital staff. Something was lost In translation and the term "comfort care" was used. It sounded good to me- comfort and care were two things I wanted to give to jedidiah.
What I didn't know was that it meant no diapers, no food, no water.
When he made it through that first night Chris an I realized that we should start asking for more. We wanted to make decisions based on better pictures. Better imaging. We requested another cardiac consult. We wanted to know about the fetal oxygenation bypass. The neonatologist was confused. We discussed comfort care- and this was beyond comfort care.
We told her that we wanted to make a decision with more up to date information.
The morning came and jedidiah experienced his first sun rays coming through the window. We had many friends and family come visit. We had others come visit as well. One visitor in particular was a social worker type nurse. She had a clipboard. I stopped listening after she called jedidiah "it" twice. What she had to say just didn't seem important anymore.
We had to fight to get him a feeding tube- evidently nourishment didn't fall under the umbrella term of "comfort care" even though I consider hunger the opposite of comfort and evidence of lack of care.
When the nurse came to place the feeding tube we had to lay him in the bassinet. he stopped breathing again. The nurse just folded her hands an backed away.
We weren't asking for intubation. We weren't asking for life support- both being extraordinary means. But a little encouragement and some stimulation is by no means extraordinary!
I snatched him up and had him breathing again before we resumed placing the tube.
Taking him home was the answer to many prayers and more than I dared to dream for. We could now completely surround him with love- no more cold and distant hospital staff. We did have a home health nurse through hospice care come check on him every now and again.
We had an apnea monitor- I was worried he'd die while I was asleep and I wouldn't even be aware. The first night with the monitor was horrible. In order to work properly it had to be snug around his rib cage. Well, that hindered his breathing so either the monitor was going of every 10 minutes because it was too loose to register a heart beat and breathing or it was so tight I worried it would smother him.
That was the last night with the monitor. I reached a peace that was beyond resignation. It was on towards acceptance. He wasn't meant to be here long. I could only do what simple things I could do to make him comfortable and the rest was up to God.
My little sister and her 4 month old moved in with us. She cleaned and cooked and kept me company- though we did have a lot of visitors.
It began to be excessive- how much attention we were getting. My older sister and my brother(all the way from Afghanistan) urged her to keep the space for us- to make sure that I and he were getting the rest we needed.
My Be not afraid peer came to visit. It was so great being able to see her holding him. She stayed with me- reaching out and being available even after jedidiah passed. She knew all the right things to say. So many beautiful mementos I received from the volunteers at be not afraid. I knew those handmade and custom gifts were backed with prayers and support.
Again- here comes the "what not to do" warning.
After jedidiahs death I couldn't count how many people- including family who tried to comfort me by saying "well, at least you know he's in heaven now". That statement did nothing to comfort me. It actually did two things-
1- it made me feel like a faithless weakling. And
2- it completely dismissed my feelings as a mother- a human mother.
And yes- my mind could understand the gratitude of a heavenly rest for my child. My heart did NOT want to hear people trying to comfort me with it. It was just a sore reminder that he wasn't there with me.
The grieving was hard. Up and down- never knowing what thought, action, or word would set off an emotional whirlpool.
So many people didn't know how to handle my grief. Some people sought to distract me. Show me a good time.
Others avoided mentioning anything. Still others avoided me altogether.
It seemed that the best grief partners for me were the ones who had been there and done that. Everyone else seemed to be of a different world. In terms of grief this divergence began during the pregnancy even- but stretches on even to today. My husband was always there- but being just as she'll shocked as I was he was at times hard to turn to.
My bNA peer was a life line through my grief after losing jedidiah.
Her words were always so comforting- and more than that I felt her presence behind the words comforting- here is a woman, who like me- was rocked by a similar loss- and after the fact is strong and caring and not completely crazy. It gave me hope. Hope that I would not only survive losing a child- but that I would be a better person afterwards.
I hope sharing the story of our journey will help in some small way.
Thank you for listening and God bless.
Sent from my rotary phone