January 10, 2013 - Happy New Year

Happy New Year!

This week, Kassidy’s cemetery is asking that all graves be cleared off of decoration, as they are doing a week-long clean up. This past Sunday, Stevie and I stopped by to gather her things so that they wouldn’t be thrown away. I couldn’t help but feel guilty, which to a person not grieving a loss, doesn’t make sense. Why would I feel guilty removing her things? I shouldn’t. I looked around and it appeared that no other parents had stopped by the remove their baby’s belongings. We walked away, leaving only an  empty space for her resting place. These days, bringing things to her grave makes me feel good. A few months ago, I was able to just press down on my belly after she kicked to let her know I was there.

The guilt of her space not being decorated was on my mind Monday and Tuesday at work. Wednesday I decided that I needed to go back and see how empty ALL the graves were to make me feel better. It was odd to see the cemetery to empty, but it really did make me feel better! It was almost eerie, as there were black birds all over the place. Nevertheless, it was still peaceful. I recall walking through a cemetery in Oklahoma with my cousins when I was about 10 years old. My grandmother lived near a cemetery, in fact just a few streets down, and we would walk around there often. I would read the headstones and do the math in my head to know how long the person had lived for. Now, I know that one date of the headstone means the baby was stillborn.

I got invited to a baby shower, which is happening tomorrow, I don’t think I’ll go. Hearing the “oos” and “awes” might upset me(who am I kidding? I will upset me). Even the games. I’m praying the next baby shower will be mine…we will see.

I feel like I’m stuck in a rut nowadays. I do the same thing every day: wake up, go to work, come home, make dinner, watch TV and go to bed. Repeat. We live about 30 minutes away from our families and lately we’ve been discussing  buying a house closer to them. This summer would be the earliest we would sell our home. I look forward to big changes like this. When I was pregnant, at least I could concentrate on Kassidy and plan for her birth. Now, I don’t feel like I have anything to do anymore.

The other night I was digging through my craft room / aka Kassidy’s nursery. I found a baby blanket that I had started sewing this past May and never finished. I didn’t finish because I found out about Kassidy’s anencephaly on June 8th. I threw it in the closet and never really pulled it out until now. Then I did something I never thought I’d do: I FINISHED IT! Then I made another blanket, then another, then 2 burp rags. I couldn’t stop sewing. Even now, a few days later, I’m still working on more blankets. I had so much fabric just sitting in that room. Sewing makes me feel so much better, I really wish I could just quit my job and sell blankets for a living. I really don’t think I’d make nearly enough money to justify it, unfortunately. It’s a bummer.

On a more positive note, we are officially allowed to try for another baby. It makes us nervous to no end, but it’s the opportunity for healing, I think. Stevie and I are hoping for a boy this time, but of course a healthy baby is ALL we ask now. I’m religiously taking my prenatals, 4mg of folic acid and calcium chews daily. Prayers please!

God Bless!

-Kelsey

December 27, 2012 - Merry Christmas

Merry Christmas Kassidy, our sweetheart daughter in heaven.

Stevie and I decided to visit her both on Christmas Eve and Christmas day. On Christmas Eve we first went to my dad and stepmom’s house to visit. We were given an ornament with a snowman family on it. There was a daddy snowman, and mommy snowwoman and a snowbaby. I LOVE that we have an ornament for us as a family. I got emotional when I opened it, I love items to hold onto Kassidy’s memory, and it means so much to us to have her acknowledged.

Following our visit there, we went to the cemetery. A lot of the graves were covered in tiny Christmas trees, gifts, stuffed animals and flowers. There were families there visiting their loved ones. It got me down to think this was where we would be every holiday. I mean, I love visiting her. I just wish we didn’t need to, and that she was at home with us. Stevie and I walked up to her, fixed her things that may have been moved around, and then stood in silence.

We then went to Stevie’s parent’s house for dinner. Every Christmas Eve they host a dinner and Stevie’s grandparents from both sides attend. It was nice to be around family. We also exchanged gifts that’s night, as each one of us drew names (Stevie is 1 of 10 kids). We were all getting ready for midnight mass, a tradition the family had participated in all their lives, and for me, since I had been with Stevie. At 11pm we drove to the church in Phoenix. Once there, Stevie began looking in his shirt pocket for something. After a few seconds he pulled out  a blade of grass…I was confused, I didn’t know what it was….then I realized it! He had taken grass from Kassidy’s grave earlier that day. I got all teary-eyed, it was so sweet of him! Stevie is a very quiet person, and this showed me that he was dealing with things in his own way. It made sense to us that having that there was like having Kassidy there (in a  weird way). She will always be with us, but this made it better.

I expected to cry a lot during Mass. I remembered being at  the Christmas midnight mass the year before, crying because I had a miscarriage just 3 days prior. We were trying to handle a loss this year too.  The church was crowded, and I wasn’t able to sit with Stevie, he gave up his seat. I think this was the only reason I was able to keep it together. If I were with Stevie I think I would have cried easily. I had a few tears while I prayed, but nothing like how I thought I would be like.

Christmas day we went back to my dad’s house so that we could see more family. We were only there about thirty minutes and then went to my mom and stepdad’s house. I made pink photo albums with Kassidy’s pictures for each set of parents: Stevie’s parents, mom & stepdad and my dad & stepmom. I love sharing Kassidy with my family. It was their first grandchild, and Kassidy will ALWAYS be the first.

On our way to Stevie’s aunt’s house for Christmas dinner, we stopped at the cemetery again. This time, we brought her stocking.  (Santa had visited Kassidy, she must have been good this year) We lit a candle and placed it on her grave, set a tiny stuffed bunny there and then we each opened a present from her stocking. Stevie opened a cross that I had wrapped for her. I opened a present that had a metal “K.” We arranged her gifts on her grave and took a picture. A “Kassidy’s First Christmas” picture… I ran my hands over the grass above her. I still remember exactly how she was laying in her coffin, so I knew her head was turned and she was facing south. She was laying on her back, but slightly turned to the right. I picture her peacefully sleeping a lot. All of our families live south of the cemetery, including us, so I thought it was appropriate she was facing south. This was completely accidental but pretty cool. After some time, we blew the candle out, took it with us and left. I felt very sad.

At dinner that night, I was around a lot of babies and a few pregnant women. Most of the night I pictured myself in the corner, rocking Kassidy to sleep as an almost 2 month old. When we left, I even pictured us arranging her in her car seat and covering her with a blanket. I do a lot of daydreaming like this. In a spare bedroom at our house (which would have been her nursery) I have a bassinet. About a week ago I changed the bedding in it and laid a blanket in there with Kassidy’s stuffed animals. Like a child, I sometimes take one of them in our bed with us, I place in up by Stevie and my pillows.

Oh, and for Christmas, Stevie got me a ring with the November birthstone (for sweet Kassidy). It hasn’t come in yet from the jewelry store, but I’ll be sure to post a picture of it when it comes in.

God Bless!

-Kelsey

December 18, 2012 - Kassidy's Due Date

I’m missing Kassidy terribly today. She should be with us…today is her due date.

Yesterday was six weeks since she was born. I had my postpartum doctor’s appointment with Dr. Connors. It went well, I’ve been on 4mg a day of folic acid, although my doctors thinks that the neural tube defect had nothing to do with my folic acid levels. My blood test for MTHFR came back normal, so I don’t have a mutation where I cannot absorb folic acid. So, as it stands, I can absorb folic acid normally and anencephaly isn’t genetic in our case. All good news. I thought I would have more peace of mind, but I don’t. I worry about our future children having defects or losing them to a miscarriage like my first pregnancy.

Speaking of future children, we are cleared to try again next month. I’m excited about this, but still scared. Some parents grieve differently than others, and I feel as if how Stevie and I are grieving includes having healthy children as part of our own healing process. The anencephaly community I am a part of on facebook uses the term “rainbow baby” when referring to the healthy baby a mother has after losing one. Stevie and I want our rainbow baby.

We are doing a lot to keep Kassidy’s memory alive. She will always be our first baby. Our rainbow baby will never be referred to as our first. I’ve planned it out so that when someone asks I will always say, “__(Rainbow)__ is our second child, we have an angel in heaven.” Yesterday I visited Kassidy’s grave. I placed a tiny pink stocking there. She also has her five lavender daises, some pink and white metal daisies in the ground at each corner of her resting place, a pink Christmas tree and a tiny snowman. I’ll visit her today as well since it is her due date.

My progress on Kassidy’s book as slowed down a bit with the holidays coming up. I’ve had a lot of distractions. It saddens me when I realize I have gone a few days without typing one word, I feel guilt. I never imagined feeling guilt during the grieving period. It’s amazing how it strikes you and breaks you down into tears. You feel guilty for trying to move on…for laughing sometimes.

As always, thanks for family and friends for the prayers and kindness over the past year. It’s kept us strong in our faith.

<3 Kelsey

December 6, 2012 - Grieving...

It’s holiday season, and each day I struggle with the thought of Christmas without Kassidy. Every store I go in has baby clothes that say “My First Christmas.” It’s not fair. This week has suddenly become more difficult that the past three weeks combined. I’m not sure why.

On Monday and Tuesday of this week I visited Kassidy. I sat there are pressed my hands on the ground as hard as I could, as if I was trying to get as close to her as possible. Wednesday I went back to pick up her death certificate. When I walked up to her grave afterward, I saw that the flowers, Christmas tree and little snowman I placed there for her were scattered on other graves around her. I thought to myself, landscapers! There was cut grass covering her little tree. I brushed it off and then brushed off the headstones around her. If another parent found Kassidy’s headstone covered like that, I hoped they would do the same. Wednesday, 12-5 also turned out to be Kassidy’s 1 month birthday. A few friends text me that morning wishing Kassidy a happy bday. It meant SO much to me!!! All I do nowadays is think about her and want to talk about her. I hurts me when people don’t talk about her, or pretend this whole thing never happened.

Crying has never felt good before, but now if I go too long without crying, I feel uptight and really down. I enjoy crying now. I read in a book that grieving tears releases more toxins and can make the person feel better. I believe this!

I stare at Kassidy’s pictures ALL day. Every time I look at them, she appears MORE beautiful. I didn’t think it was possible!

I’ve gotten a lot of Kassidy’s book done, I started researching publishing companies and seem to favor some Christian publishers. I need to save money and pick a package, which is kind of a set-back. That is okay though, I want the book to be amazing, which takes time.

The website I posted in my previous blog entry has done some research and collected data from about 700 anencephaly mothers. Turns out, only 1 other woman responded stating her baby ALSO had an omphalocele! And only 11 other babies had heart defects. Considering Kassidy had anencephaly, an omphalocele AND a heart defect is really something amazing. It really puts it in perspective.

Kelsey

November 29, 2012 - Kassidy is on an Anencephaly Website!

Hi All!

Kassidy’s story was added to an anencephaly website:

http://www.anencephaly.info/e/kassidy.php

It has a shorter version of her diagnosis and delivery.

It’s been a little over three weeks since she was born, I miss her a lot. I visit the cemetery about 4-5 times a week right now. Usually, I just sit there and cry. Sometimes I talk to her. Stevie and I brought her a little pink Christmas tree. She is the only baby there with a pink tree (she needed something girly). Her headstone won’t be there for a while longer, maybe 9 weeks. I’m looking forward to seeing how it turns out.

I  began writing her book. I’m on the third chapter right now, it’s moving pretty fast. I hope I am able to remember every important detail. The book will capture more of my emotions than this blog, I think. I have room to elaborate on details and encounters I had with doctors, etc. I’m not sure where to begin with finding a publishing company….?

God Bless,

Kelsey

November 20, 2012 - Postpartum Doctor's Appointment

Yesterday (11-19-12) I met with Dr. Connors for my 2 week postpartum appointment. I arrived at the office 15 minutes early, but the receptionist asked “Are you Kelsey?” When I replied yes, she immediately walked me back to an exam room. I imagine they do this with patients who have recently had a stillborn baby…that way we don’t wait in the room with the pregnant patients and those who brought children with them. Once she left me in the room, I began tearing up. I was there alone…without Kassidy. Normally they weigh me, check her heartbeat…this appointment was already different.

Dr. Connors walked in and we hugged. She asked how I was feeling, etc. I love my doctor! She is so sweet and has been supportive this whole pregnancy. She told me I was a good mom, and that she was happy to know that my family was so involved. Dr. Connors had visited me in the hospital the night Kassidy was born and got to see her. Although she didn’t turn out to be my delivery doctor, I was SO excited that she came.

I got a prescription for folic acid, which turned out to be 4 tablets I have to take daily in addition to my prenatal vitamin and 2 calcium chews…7 things! It’s a lot, but of course I will take them all. I’ll be on these folic acid pills for the rest of my “fertile” life.

I requested to be tested for MTHFR. This is a deficiency in which the body cannot absorb folic acid correctly…which can result in anencephaly. I went back to the doctor’s office this morning (11-20-12) for the blood test. I expect the results within a few weeks.

In 4 weeks I will see Dr. Connors again for an exam and then we will discuss when Stevie and I are able to try for another baby. The general rule is that I need to be on the folic acid for three months.

After the doctor’s appointment I went to visit Kassidy at the cemetery. She still has pink roses from her funeral there. Her headstone will not be there for another 10 weeks or s0. It will be an imperial red granite reading “Kassidy Briana Johnston    /   Nov. 5, 2012     /  Our Daughter, In God’s Care”   I’m excited because she will be the only baby there with the red granite – she will stand out! 

Kelsey

November 15, 2012 - Kassidy's Funeral

Hello Friends and Family,

This past Saturday, November 10th, we had Kassidy’s funeral. I woke up already emotional and upset, I didn’t want to go, but knew I would be able to see my daughter one last time before the service. On the way there, Stevie and I stopped and got 1 single white rose for Kassidy. For us, white meant innocence. We got to the cemetery and we were able to see Kassidy and arrange her in her casket just how we wanted. She was already snug in her blankets that we had wrapped her in a few days before. Her skin was pink, she looked so precious and peaceful. We set the white rose next to her along with a picture of Stevie and I. We wrote her a little note on the back of the picture…telling her that Mommy and Daddy loved her and we couldn’t wait to see her again one day.

The first hour of the service consisted of family and friends coming in and hugging us. There was a lot of praying and a lot of tears. I didn’t quite know what to say to anyone…and I could tell they didn’t know what to say to me. All I could think about was that this was the last time Kassidy would be within my reach.

After the first hour, Stevie carried Kassidy’s casket out and we lead a line of cars over to her grave. Father Juan from our church met us there. He prayed and blessed Kassidy – it was a beautiful service. Everything turned out much better than I would have imagined. I didn’t cry as much as I thought I would. Maybe it was because I knew she was watching us. I knew she was in a MUCH better place, and here we were crying about it.

We had a lunch at a nearby restaurant immediately afterward. It was nice to be with family and lighten the mood. My dad and stepmom brought a beautiful pink cake!

So here we are, 9 days after Kassidy was born. It’s a weird feeling…that everything is over. I don’t have any more planning to do for her, and I don’t quite know what to do with my time. This week, arts and crafts have been taking up most of my days. I find myself going through her blankets a lot. A pink blanket that Kassidy was wrapped in while in the hospital still sits on my pillow at night. Her smell isn’t there anymore but I still keep it there. Sometimes I wake up in a panic if  it’s shifted to another part of the bed and I can’t find it.

I’ve had several people contact me and tell me how much Kassidy’s story has touched them and even changed their lives. It’s so inspiring to hear this, and I hope her story continues to be shared! One woman invited me to speak at a group, others have invited me to participate in books about anencephaly moms! I fully intend to do all of this and even more opportunities that come my way. Kassidy deserves it!!!

Love,

Stevie, Kelsey and Baby Kassidy Briana <3