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Another Year Down

It’s almost time for our annual #deedsfordaisy. If you’re new here and looking for a quick recap, Deeds for Daisy is annual event held on the birthday of our daughter Daisy Jean Kissack who was born March 2, 2020 with Alobar Holoprosencephaly. My husband, daughter Dalli and I had an hour with her before she quickly left this earth to return to Heaven. Since then we have celebrated her birthday by spreading kindness and good deeds. If you would like a more detailed recap, or perhaps you are here because you are facing something similar….. Scroll all the way down to the bottom and be prepared to read the nitty gritty. As I re-read my blog this year, I almost went through and edited some things (mostly my super vulgar language) but then I remembered all the messages from those who appreciated those raw feelings being expressed in the only way I know how “unfiltered” so, sorry Granny but for now I will leave everything as it was and as I was feeling in that exact moment of time.

I remember March always being something I looked forward to, as its my birthday month and I would tend to celebrate the whole month. When I met my husband I started to have to share, as he is a March baby as well. Now as it approaches, my mind and energy are all centered around making sure I am keeping my babies memory alive, sharing her story, and hopefully helping at least one person. This year is a little more heavy because I had the opportunity to “help” my best friend in one of the worst ways you could ever hope. On November 19, 2022 Hattie Dale Spangle was born at exactly 24 weeks, and after 22 days in the NICU left to be with Jesus on December 11, 2022. I remember each day Hattie was in the NICU, trying to support my friends the best way I knew how. I remember being in awe of the expanse of prayer chains, donations, and awareness Hattie created with her tiny birth. I remember the devastation learning that Hattie was back in Heaven. I spoke in an earlier post about random things would trigger me as a momma of a baby in Heaven and this triggered a familiar feeling of helplessness, confusion, and once again anger. How had I gone from being so naive to barely knowing about loss, to losing a child, to now having someone close to me lose their daughter as well. My biggest trigger was a feeling of disappointment within myself that I wasn’t “healed” by now!!! Why had I not figured out how to feel whole again so that now, in her time of need, I could give my best friend the Cliff Notes version of how to function after you lose a child. The answer is, I still don’t have those answers. If you know me, you have to know how much that kills me.

I like to Google things, I like to research, I like to KNOW. Here’s what I do know; my friend has been so vulnerable and raw in the way she shared and continues to share Hatties story, and while she thinks I was able to help her, in the last few months she helped me in so many ways. I’m still going to echo my previous sentiments “Its OK to not be OK” but to expand upon that is that we never know if someone is OK so let’s be good humans. Let’s remember that nothing in this life is promised and we should love and enjoy each other. On March 2, lets do some extra good deeds and remember Daisy Jean Kissack and maybe that good feeling……. that little jolt……. that warm fuzzy feeling will remind us all we should be good humans all the time.

Growing Like A Daisy

It’s been four years since our sweet Daisy Jean went to heaven after the longest yet shortest hour I have experienced in my life. Oddly enough those years have seemingly passed in the blink of an eye, but as I read my past words and thoughts (as I seem to do annually) certain parts seem so very long ago. If you’re here for the first time, I encourage you to read from the beginning and get an idea about our familys’ journey. A year ago I added a blog post with all kinds of secret hormones and emotions going through my mind that I couldn’t even admit to myself in fear that I would jinx all the blessings that were coming to my family as I was expecting a baby. A sweet rainbow baby, a daisy among the weeds, a rose among the thorns, an onion ring among the french fries basically…….. a blessing that I never thought would come my way again, until it did. An added plot twist to this story of redemption, we were having a baby boy, officially uncharted territory for this girl mama.

Pregnancy after loss was a solid top 3 in the list of hardest things I have done. The regular roller coaster of emotions that accompany being pregnant resemble a ride on the carousel compared to the ride I experienced over those 38 weeks. I was so thankful to be expecting but I was terrified, even after doing high risk testing and checking everything possible. I was assured and reassured that this was going to be a healthy baby, but I couldn’t convince myself. I had tremendous guilt at my own lack of faith. The same faith that had carried me through the past four years had disappeared into the world of “what if’s” and it was truly a time of sleepless nights and panic attacks that I attempted to hide from husband. I wouldn’t allow my friends to throw me a baby shower, and I didn’t want to set up a nursery (although I have yet to decorate a single wall in the nursery, but mind your business he doesn’t even sleep in there yet and wallpaper is so dang hard) On November 3rd in the same hospital, with the same amazing O.B. and her awesome team, after another scheduled C-section, My sweet perfect William Colter Kissack AKA Prince William AKA Krash AKA The handsomest man in all the land…………………was born! I felt a happiness in my soul that is indescribable. Watching Dalli with him brings forth all kinds of emotions and even a bit of sadness knowing these are the feelings we were robbed of amidst the loss that we experienced. Dalli loves to proclaim that she has 2 siblings now and promptly corrects anyone who says I have two children now.

This year for Deeds For Daisy I hope you challenge yourselves to do a good deed, a warm fuzzy, a pay it forward, to someone who would least expect it. Big or small any deed is a reminder that we care enough to be good humans to one another. So many have experienced loss and we never know who is fighting a silent battle. On Thanksgiving my Granny went to be with Jesus (and Daisy and our dog Ziggy as Dalli says) and the grief has been a fickle bitch as per usual but I now know the things I am capable of and we will continue to make her proud. To those who continue to reach out and tell me of similar experiences that you have had, please know I appreciate your vulnerability and I hope you feel heard. I will always double down on “It’s O.K. to not be O.K. Don’t forget to to tag us #deedsfordaisy so we can share in your joy as well.

Deeds For Daisy

In 2021 My husband, cheeky daughter Dalli and I started #DEEDSFORDAISY. Coming off of a wild unspeakable “Rona” year I had so much anxiety in relation to what I could do to make Daisy’s birthday a day that wasn’t always going to be a source of sadness and trauma. In simple terms how can my family not have a shit day on the 2nd of every March from here on out. In essence this is how Deeds For Daisy came about. I first thought about just taking the day to surprise our friends and family and deliver potted daisy plants for them to grow but I decided on a whim to post about Daisy’s first Heavenly birthday and challenge people to do good deeds and post about them. Ok, Ok, I know we are not supposed to do good works with the sole purpose of telling everyone about it and it was slightly cringe for me to challenge the internet to do anything because I am the furthest thing from a social media mogul you can imagine, but I decided full send ……. I sent it……..

Dalli and Daisy both in Daddies arms

Later that morning after bombarding my innocent husband who just got home from a shift with a garage full of potting soil spilled everywhere, remnants from transferring flowers into cute pots, a half naked Threenager, and a more than slightly anxiety triggered wife, ( have I mentioned that kid is a saint) we set out to have anything but a shit day. As we ran all over town making deliveries, sending coffee gift cards to pay it forward, Venmo prezi’s, any little small source of joy, we started to see the ripples of the good deeds. People were sharing and doing their own deeds all in the name of our sweet babe. For days after Dalli would load up in the morning and ask me what good deeds we were going to do that day and it made my heart so happy to know that we were teaching her about kindness while remembering her little sister. In my mind the day was a success. Was it a sad day? Absolutely, nothing will take away the pain that one feels when they lose someone but spreading some joy was a great bi-product that I didn’t realize would help me so much. So here we are on the eve of Deeds For Daisy 2022, and I hope that some of you might decide to do a warm fuzzy, a kind deed, whatever you may call it and share it so that we may share in your joy!

So Whats It Like?

In my Googling endeavors I really wanted to find out what I could expect in the hospital. What would happen with my baby, and I? Are there different weird rules? Do people still get to come? Honestly I didn’t find much, so heres my experience. So what’s it like in the hospital when your baby does not live? Its awful….. it still finds me in random panic attacks that no one sees because they just assume I’m being pensive or bitchy, but amidst the obvious trauma of the day, it was also beautiful. I can’t verify this because I am not a medical professional but there’s got to be a secret code, or hand signal or some type of protocol that lets the hospital staff know what’s going on in a room, because everyone we came into contact with was so loving, genuine and emphatic, but mostly they knew….. they knew what was going to happen and then later what had happened. We did not answer one stupid question while we were in the hospital.

I mentioned before that we had about an hour together as a family before Daisy passed. The best thing I remember is that her eyes were open and she saw us. As my C-section was being closed up I remember hearing Billy talking sweetly to her before they put her on my chest. We had photos taken and Dalli got to see her sister, and we got to see them together. Dalli was only 2 and didn’t really realize what was happening at the time, but as a 4 year old now, we look through those pictures together (happily for her secretly still so painful for me) and she is able to remember her little sister. One thing I wish I knew from a planning perspective was that they have a special cooling element that looks like a changing table of sorts (that’s the best description I can muster) it keeps the body cool and preserved so that you can choose to have as much time in the room as you need. Had I known that, I think there were those close to me who could have come to visit. I have a keepsake box that the hospital provides, with little mementos in it. I think an entire year went by before I could even look inside. The hospital also sends you home with a weighted teddy bear that feels like the weight of a baby is in your arms. This was an idea cerated by another amazing momma who had been through the same situation, and now they are provided in many hospitals. I’ve slept with that thing many nights in the beginning and Dalli now sleeps with it too. I said in an earlier post that it was both the longest and shortest day of my life…. I still believe that. I truly do still believe that God was felt in that room on March 2nd, it was as beautifully tragic as you can imagine. Those who may thinking right now “I can’t imagine” please know that that is a blessing, if you have faced this, or are in the process of facing this, please know that I see you, and I am you, and it’s ok to not be ok.

So what’s it like being a “bereaved parent” (also I dislike this phrase) In hindsight Daisy’s due date was April 19 2020, due to complications that are common with HPE she came March 2 2020… two weeks before schools shut down, Covid protocols, and life as we knew it changed. I can’t help but think about how different our experience would have been a month later during peak Covid panic. Had it been mid April our family wouldn’t have been able to meet Daisy and certainly no photographs taken to remember every precious second. Daisy coming early has been an occurrence that I have come to call a blessing and Covid is what I’ve come to call a huge time out for me. Ever fiber of my being could not wait to get back to “normal” to immerse myself in so many things that would keep my happy, distracted, and “normal” but that escape never came. We were socially distancing ourselves from each other and I had only myself and my two year old to keep me from the darkness. I would love to be typing the next sentences as a checklist of “how to get over grief” I do not have those answers nor do I believe any self help book, therapist, or pill can do that for an individual. I can tell you as the mother of a baby in Heaven there are weird things that will trigger me such as watching doctor shows. I used to love ALL the doctor shows Greys, The Good Doctor, ALL of them, but about every two episodes they have a storyline that involves a baby or a child and I have to quickly change it to Disney + if I plan on sleeping for the next week. My husband, whose a fireman, (whose gonna shit when he reads this part) occasionally has to respond to calls that involve children and is extremely affected for days afterwards. I can tell you the best thing I want to do as a mother of a baby in Heaven is to remember Daisy because she was real and she was here and she is important to us. In doing so, I hope to show my daughter here on earth a healthy example of living, and everyday that may look completely different from the day before ….. but thats ok. I come into our living room and often hear Dalli talking to her sister and her strength makes me so proud. I love that she loves her sister and she is so brave! So whats it like continuing on without a huge piece of your heart, it’s exactly how you would imagine, we don’t know how we do it, yet everyday we do.

The Last Trimester

Maternity session with Made You Look Studio

The Team

Its wild when you think about how busy a regular third trimester can be, then you multiply that by high risk pregnancy, and you get total chaos. I’m a planner by nature, and being able to plan in between each appointment because each appointment could bring some new complication brought about a circle of hell for me (and lets be real all those who had the pleasure of encountering me) that I had yet to experience. I think the problem is that when you deal with any type of “team” collaboration can get tricky. My team consisted of my regular O.B. a Perinatologist, and a Neonatologist. To make it easy, we have the cucka doctor, the baby in the belly doctor, and the baby out of the belly doctor (you’re welcome)

At my regular 30 week appointment with the “baby in the belly” doctor we found that while all of daisy’s body was measuring normally, her head was becoming fluid filled and measured 36 weeks (6 weeks ahead). Up until now we had not had a jump like this, but we had been warned that this could be a possibility towards the end of the third trimester. We made a plan to re-check in two weeks but to start thinking about what we would do if the growth rate continued to be rapid. I had the option of induction or scheduled C-section, but lets remember although I had had a baby naturally before she was a tiny baby, so this head situation had me a little worried about the exit plan.

Two weeks went by so slowly, but I did realize how much more uncomfortable I was this pregnancy compared to the last. I was having to roll around on a yoga ball like a beached whale while at work, and lived on a heating pad at home. I had a hunch as to what I was going to hear at my next appointment. Sure enough when I was only supposed to be 32 weeks pregnant, Daisy’s head measured a little over 40 weeks. I was given the option of being induced the next day (ummm hellllluuuurrrr I hadn’t even written my sub plans yet!) We decided it would be safer for all involved to schedule a C-section. Two days later after the “Team” discussed all the sciences and two dollar words you can think of they asked me if I would like to have my baby on Monday (mind you, it was Thursday already) It was at this very point I felt all control being relinquished, I was no longer in charge of my vision of the birth plan, it was time to get over it, and plan for what we now knew was coming. Those who know me know I did not take these new orders very well, it may be a damn Pirate Ship, but I am used to commanding my own Ship at all times. I called Billy and asked him if he was busy Monday, he replied he was wide open, so I said :well lets have a baby Monday Morning” to which I was met by awkward silence. I love to take his breath away!

Preparations

I fervently hope there’s never a reason any of you need to know about these preparations, but I also hope if you have found yourself chosen by God to experience this, that these suggestions make it possible to do so. I had so many beautiful souls come out of the wood works to offer advice or personal experiences and I swear to you I took each and every one to heart. I admire all of you, who had to find your strength to be able to try to make my journey easier. I had previously heard of a company that takes donated wedding gowns and makes them into Angel Gowns for Still born and NICU babies that do not get to leave the hospital with their parents. I contacted Patti Browne of David’s Cradle in Tehachapi and she informed me she had also recently took over the ministries of Kern County Angel Gowns as well. Patti listened to my story, I asked if she could make Daisy a dress and donate the left over parts of my wedding gown to provide for even more Angel Gowns. She was not only nice enough to complete this task she personally picked up my dress and delivered it back to me by Sunday evening, praying with me both times. We decided on keepsakes we wanted made, and to have photo’s done although I previously thought there was no way I wanted those types of reminders for her Birthday every year. Once again the perfect person was placed in my life at the exact time of need. These types of occurrences happened frequently, we would find ourselves in need of a contact or service, and someone would show up or call with the exact thing we were needing. I packed a normal pregnancy bag with all the essentials. I packed preemie clothes, diapers, and an infant car seat in good faith as we were still yet to see our miracle and purpose. I didn’t sleep at all because in true last min fashion I had a huge paper due by Midnight Sunday and had to be up by 4am to wash, get dressed, and head to the hospital. Even God provides beautiful distractions.

Our Sweet Daisy Jean (peep all that hair)

March 2, 2020

We were met at the hospital by a pastor from our church who came to pray with us, yet another example of someone knowing exactly what we needed and providing that for us. The rest is meant for another day and another time after we have had time to heal and reflect. I can tell you we had a longest yet shortest days of our life that day. Some of the most got punching and heart wrenching experiences and feelings we have ever felt, and yet some of the most compassionate, beautiful moments that we will cling to for the rest of our lives. We were blessed with our time with Daisy, she taught us far more than we could ever teach her.

The Why (3)

When I was doing my own research I was looking for more than just big words, doom, and gloom. I did not find much of that. This blog is more than just a way to spread awareness or share our story. I cannot promise that none of these posts will get dark. I cannot promise that I will not use profanity or perfect grammar. I Cannot promise that this will be the cutest most well put together blog you will ever read.(I’m a special Ed teacher people, we do our best work in crayon) I CAN promise that I will be unabashedly honest in my thoughts and feelings as I continue to share. I want others going through similar situations to know it’s O.K. to not be O.K. It’s O.K. to be confused. It’s O.K. to be scared. I’ve yet to discover what the lesson is that I am supposed to be learning in this situation. I do know that every time I feel that precious baby kick its a reminding of the blessings we have. I choose to focus on those blessings, live my life, and enjoy whatever time I get with our precious baby. I pray I’m strong enough to continue to share our story of Delivering Daisy.

Emotions (2)

My husband I agreed that we needed time to process this information and how we were feeling before we attempted to tell our family about the Doctors findings. We thought it would be easier than having to tell everyone bad news, on what was supposed to be a day of fun, family, and food. WE….. WERE… SO….. F@#(%*……. WRONG! What we did not realize was how much this family was anticipating the new baby and because of this would want to talk about her. So now we were faced with conversations that reminded us our baby girl would probably not be coming home with us. We discussed perspective names (I like to tell people we are naming her Dilly so that I would now have Dilly and Dalli) I painfully pretended to be excited to discuss new nursery themes, and listened to everyone speculate about the type of big sister Dalli would be. I am proud to say I only had one mini breakdown in my closet the entire day. After the last guest left we hopelessly looked at each other in sheer exhaustion. I thought about the unknown amnio results, and hoped we wouldn’t be told that our genetics had caused this turmoil. It was in that moment my calm controlled demeanor melted away ……I was mad! It just wasn’t fair. Why was everything so difficult for our little family? Nothing ever came easy for us! Why would God choose this perfect man for me to spend the rest of my life with if our genetics were not compatible for creating life? Why was I so incomplete (faulty even) as a wife and a mother. Were we too demanding, even greedy, especially since we were given one miracle baby… why did we think we deserved two? My poor husband has had many front row seats to many meltdowns over the years, but nothing to this magnitude. He asked me if I wanted to cancel my daughters Birthday party (2 days after Thanksgiving) That was all I needed to return to business as usual. We had a party to put on! I had shit to do!

The Birthday

We realized from the way Thanksgiving went, we needed to tell our family and a few close friends in the hopes that it would make the Birthday party a little easier not expecting those awkward questions that gave me panic attacks to fake answer. It did help, but mostly we learned that telling others allowed us to activate this amazing support group of people who now understood what was happening but were also able to give us time and space to figure out our own emotions before asking questions of us. The day of my daughters birthday it rained…. it rained all damn day…. seriously people I cant make this stuff up. We were moving tables inside, deflating bounce houses, retreating on a large scale. It was a beautiful day of a crowded house, all the desserts, a million kids, and my precious toddler throwing a fit because we expected her to open her multitudes of thoughtful gifts (truly A-hole parents here). At the end of it all we were exhausted, almost zombie feeling, I know neither of us were sleeping very well. The thing about life is it does not slow down and wait for you. Not in the highest of highs or the lowest of lows. We continued on with our busy schedules and take it all one day at a time. We finally got the results of the amnio and it showed nothing out of the ordinary. This is good news if we decide to have children again, but a struggle when laying in bed at night and feeling the “why’s” creep into your thoughts.

Let me explain something very important about how we currently feel about everything we know. We are taking everything the doctors say very seriously and planning accordingly. We do not want to be in the moment of tragic events and not have discussed specific wishes we have for baby Dasiy, but that does not mean we have given up hope, we have lost our faith, or we are being negative. I see both of our testimony’s being strengthened daily because of the trial we are currently navigating. We will continue to hope, pray, and prepare for baby Daisy.

The Announcement (1)

The day we went public

As a couple, deciding to share your joy and secret with the world can be one of the most exciting, yet terrifying moments of your life. You see, we dealt with multiple miscarriages and years of infertility before being blessed with our daughter Dalli. We also had a miscarriage at 12 weeks before this pregnancy so we are always on edge with “going public” because having to tell multitudes of people that you’re no longer pregnant is a truly emotional ride. Appointment after appointment went well, possibly even normal you could say. Well, with the exception of being considered a “geriatric pregnancy” (lick yourself Kaiser…. I’m 34). So we prayed together as a family, and decided it was time to announce Dalli would no longer be an only child. Upon announcing we were met with an outpouring of love and support from everyone and things carried on they generally tend to do. It wasn’t until our second trimester that everything got turned upside down.

Second Trimester

I opted to do the genetic testing that’s offered as part of your second trimester testing, as I did with my first daughter. There was a marker that came back in the blood work, which means you get referred to see a genetic counselor and see a specialist who performs a level 2 ultrasound. Two days before Thanksgiving I go to this appointment. I would love to tell you what the genetic counselor said, but in all honesty I know these tests have a very high rate of false positives, so I really just wanted to get to the ultrasound part, where the doctor would check over the baby, tell me everything was alright, and I could proceed with my last minute Costco run with the rest of the world. Till this day I will praise the efficiency of this doctor, I did not lay there in silence for 20 mins trying to read his face, it was actually only a couple minutes until he said “I do see some things that are troubling”. I have this gift where in times of crisis, I become very business like. I sat there and listened to him explain the abnormalities he saw in the babies brain and facial features, making endless mental notes of words I wanted to research as soon as I could leave. The doctor explained and even showed me on the screen that where the babies fore brain should be divided into two parts there was no division and that this is something that develops in week 5 or 6, so there was no chance it would miraculously form as the pregnancy continues. I had so many questions in this moment; What would this mean for brain function? Quality of life? What causes this to happen? What is the prognosis for the baby? Was it my fault? He did his best to ensure me first and foremost it was not my fault. He explained if we did an amniocentesis it would show if there were any chromosomal abnormalities that would explain why this happened, which would not change our prognosis of what the ultrasound showed. We decided to do the amnio because it could tell us the likelihood of this happening again should we choose to have another baby.

The Specialist

My O.B. was informed of the findings and got us an appointment with the Perinatologist the very next day, so we did not have to wait long for answers. The rest of my day (and most of the night) was filled with my own fervent research which only led me in circles, and searching scripture for comfort. This was one of those rare times for me when science and faith become intertwined as you try to gain your own understanding. Our Perinatologist saw the same things as the other doctor but was able to give us more in depth answers (and in English not doctor speak) Our sweet baby girl (whom we had began to call Daisy) was diagnosed with Alobar Holoprosencephaly. This was something I had read about and I was fairly certain it was not good. I again went over all my questions, but thankfully got answers this time. Let me throw some science at ya for a min. Alobar Holoprosencephaly is when there is a complete failure of the brain to divide into right and left hemispheres which results in the loss of mid-line structures of the brain and face as well as fusion of the cavities of the brain, known as lateral ventricles and the third ventricle (which are normally separated). The prognosis depends on the sub-type. The Alobar Holoprosencephaly is the most severe type of the defect and the affected fetus are usually stillbirth, or die soon after birth, or during the first 6 months of life. We were given the option to terminate the pregnancy, but without even glancing towards my husband I knew neither of us wanted that. It was not our decision to make. We returned home to begin process this information, and get ready for Thanksgiving, we were after all, hosting both our large families this year and Thanksgiving was only a day away.