People at the Beach

Yesterday evening we went to a party at my grandmother's condominium. As we were waiting at a stoplight looking at people on the sidewalk, Kyle asked me if I ever saw someone I didn't know enter a house and thought about how it is that other people who live in the same town have separate lives from me. I thought it strange to be asked that question as I had been pondering something along those lines that very morning.

While I was at the beach, I noticed others who appeared to be there for completely different reasons than I. The driver of the truck I had parked next to was sitting in the cab listening to rap music and reading the newspaper. After about half an hour, he drove away. Another man was there with his dog. He walked along the beach gathering things from the sand and putting them in a plastic bag. I thought I'd have to compete with him for beach glass. But, I was wrong. He was picking up litter and stopped only to chat with a couple of women who sat near the lifeguard tower with their little dog. Later on a group of young men came. They stood looking at the huge waves for a bit. One of them finally dared jump in the water. His buddies soon followed. A middle-aged couple strolled up and down the beach speaking softly to each other. There was one woman who stood at the far end of the beach gazing upon the water. A wet suit garbed man swam along the shore with what appeared to be a metal detector in his hand. As I was leaving I noticed a woman sitting in a meditative pose. Her eyes were closed and she smiled so serenely. We were all doing different things yet we all were there at the same beach on the same morning-people seemingly not connected, yet connected just the same.

Fisher in Beach Glass

Yesterday I told Kyle I needed to take a mental health day today. I didn't realize it at the time, but today marks three months since Fisher was born. I must have been aware of the date subconsciously, because I woke up this morning around 5 AM with a burning desire to go to the beach and watch the sunrise. I also thought it would be an opportune time to write Fisher's name in the sand. I had planned to do it on Christmas morning, but there was wonderful weather today. Who knows what it will be like later?

I gathered items I anticipated needing, a candle and a glass vase to serve as a hurricane, matches, beach glass, and a wooden spoon. After bidding my sleepy family goodbye, I headed to Sandy Beach.

It would have been nice to light a candle to remember Fisher by. Yes, it would have, but I didn't. The candle I brought with me had too little a wick. I gave up after scraping away wax and wasting no less than five matches. It seems the hurricane wasn't needed afterall. The malfunctioning candle was soon abandoned for other pursuits.

After giving up on candlelight, I decided to write Fisher's name on the sand with the beach glass I had brought. Beach glass is a nice reminder of him since my older boys and I had started collecting it while I was expecting Fisher. After I wrote his name, I took a few pictures. They didn't come out too well as it was still quite dark. However, I noticed as I was writing his name that today would be an excellent day for collecting beach glass. So, I set off to add to my collection.

When the sun finally started to rise, I pulled out my wooden spoon and used the handle to write Fisher's name in the sand. I took several pictures trying to get a great view of the sunrise with his name near the water. I got a couple that I liked, but my favorite came after I resumed my beach glass hunt.

In just a short time, I realized I didn't have room in my container for all the beach glass I could find this morning. Rather than find an alternative way to carry it all, I decided to ignore all the brown glass. Then I elected to pick up only glass with a slight tinge of blue. The rules changed one more time when I found my very first piece of cobalt blue beach glass. Ever since my boys and I had started collecting beach glass, I'd hoped to find some of a cobalt blue color. There was only one piece for me today, but it was enough. After I found it I wote Fisher's name one more time with beach glass. Lovely.

Butterflies and Sunflowers

Things that were just things begin to have meaning when you associate them with those you love. Butterflies and sunflowers are two such things for me.

A dear friend who had also lost her baby to miscarriage a few years ago named her baby Pulelehua which means butterfly in Hawaiian. Whenever we saw butterflies we would think of our little babies playing together in heaven. Now butterflies also remind me of little Fisher. Three butterflies are extra special to me. The first one was from Donna, the nurse at the hospital who checked me in for Fisher's birth. Although we only saw her those first few hours, she made an incredible impact on our experience there. Not only was she kind and supportive, but she also painted a beautiful butterfly for Fisher. Another butterfly was drawn by Sophie who gave it to me the day she came to meet Fisher. It is a happy butterfly in a lovely garden. A third, silver colored butterfly came with a bouquet of pale pink roses from dear friends. They are all very different but, they all remind me of the love of friends and especially Fisher's sweet spirit.

Sunflowers! I love them. I'm so glad Sarah thought to bring them to my home after Fisher died. When I walked in the livingroom I saw the bright yellow blooms and felt a surge of joy. Yellow is such a happy color. It's wonderful to have it around to lighten my mood. Last week Kyle gave me an umbrella with a huge sunflower print on it. I almost cried when I saw it. He explained he had seen a woman walking by the road with an umbrella like it and knew it would be perfect for me. It is. I love sunflowers because they now symbolize the incredible joy I expect to feel when I am with Fisher again.

Little Reminders

Although there have been moments over the last week when I thought I'd forgotten what Fisher looked like, today I had little reminders. When I looked into Kyle's eyes, I realized Fisher's were shaped the same. Fisher's ears were so different from his brothers, I wasn't sure whose they were like until this afternoon when I noticed Kyle's were very similar. When Donovan took a drink from a water fountain, his ears wiggled just like Fisher's did when he was eating. When I look at Conrad or Donovan, I see Fisher's nose and I see his mouth in the shape of Donovan's. I'm glad there are so many similarities between Fisher and others in the family.

Friday through Monday-Three Precious Days

Dear Fisher went home to live with his Heavenly Father yesterday. When I realized he was going, I begged him not to go yet. Even so, I feel so lucky he was able to be with us as long as he was. I didn't think I'd be bringing him home from the hospital. But I did. In those few short days we were enveloped in a love I had never felt before. Those fleeting moments he was with us are so precious to me.

He was a happy baby. He never cried, but he snorted, squeaked, cooed and even laughed. He slept so peacefully most of the time. It was a joy just to behold him.

When I gave him his only bath, I loved him more than I ever new I could. When I clipped his nails I knew it would probably be the first and last time I'd have a chance to do it. Each time I changed his diaper I felt so lucky to be caring for him. When I fed him, he'd open his eyes as wide as he could. I loved watching his brothers cradle him so tenderly in their arms. Love shone in their faces as they looked at him. I loved his daddy even more as I watched him cuddle with little Fisher.

I am grateful to the friends and family who came to share their love with Fisher. My house was a house full of joy because of Fisher and because of all who loved him too.

Happy Birthday! and a little extra....

Our dear little Fisher was born on Friday, September 18, 2009 at 2:56 PM. He weighed 6 pounds 2.8 oz and measured 19 inches long. He snorted like a little piggy all the rest of the day. His daddy said it sounded more like Donald Duck. By the time he cleared most of the mucous, he squeaked just a little. We didn't think to have a birthday party for him at the hospital but his brothers and I had a small party yesterday for his first day with us. I think we may have another one today. Party, party while the little guy is with us.

When we were discharged from the hospital Fisher had no gag reflex and no sucking reflex. With his pediatrician's consent, we decided not to try to tube feed him because of the danger of his aspirating some liquid. However, last night he did begin to suck and did show signs of a gag reflex. So, we fed him a little with a medicine dropper. Early this morning, he actually took a little from a bottle. I sure hope this means we'll get to spend a little extra time with Fisher before he has to leave us.

Today has actually been a very busy day for us. This morning a very kind photographer from NILMDTS came to take pictures. (Thank you Ella.) Conrad insisted on bringing out the orchids my grandmother dropped off yesterday. He really wanted them to be in the family portrait with us. Fisher opened his eyes long enough to take a few pictures with his daddy. Later we went to church and had Fisher blessed. So that was only two events but, we just came home from the hospital yesterday. Fisher and I are going to take a nap.

Overwhelming Gratitude

Today I just have to say how glad I am to have people in my life who love by doing. It's hard for me to admit I can't do it all and actually ask someone else for help. Even though I haven't actually made a request, angels on this earth are picking up where my strength leaves off. This week I've had meals brought to my family by dear friends from church. A family that lives nearby saw that my yard was in need of work and took care of it. My dear sisters have recently been here. They sacrificed time with their own little families to bring me moral support, friendship and a helping hand around the house. One friend dropped by with a little footprint kit for Fisher which is something I've wanted to pick up but never remember to look for while I'm out shopping. There are others who stand at the ready with offers to take care of my boys while I'm at the hospital. I am overwhelmed by their love and am so grateful to experience it.

Waiting for Fisher

Yes, we are still waiting for Fisher's birthday. He just doesn't seem ready to say hello to the world yet. His daddy says it's just fine if he takes his time. I actually agree. With his brothers, I wasn't so patient. In fact, I was quite impatient. Right now I just want to savor the moments I do have with him. I suppose my doctor will eventually tell us it's been long enough. But, even he isn't too worried about it. The last time I spoke with him he casually said it would be fine go another week and a half to two weeks.

Birthday Countdown

Wow, I can't believe it's almost here! Fisher's birthday, that is. Of course I still don't know when it will be, but his due date is less than three weeks away. I am both anxious to hold him in my arms and hesitant to let him go. A mother's love is like that whether there is a farewell at birth or a farewell as a child sets off to take on adult responsibilities. The urge to protect and care for a child is hard to resist. I know there is no need to fear for his protection. He'll be going to a far safer place. It doesn't mean I won't miss him though.

Conrad's Sister Wish

He's made it very clear from the beginning of this pregnancy that he wants a sister. He was quite indignant the day I told him he would have another brother instead of a sister. Yesterday, he told me he's sad about Fisher. He's not happy his little brother won't be able to stay with us very long. Today, he's back on the sister track. When I was hanging out the wash he asked me if we could name his sister Nim. I said it was a nice name, but I didn't want to name any of my children after a movie. Besides, we don't know if there will be a sister. He wasn't so easily dissuaded and continued with the name conversation. Conrad said if we wouldn't use Nim for a name we should go back to our original plan to use Matilda for his sister. I told him I'm kind of burned out on that name since I've had to listen to "Waltzing Matilda" almost daily for a few months now. But, he insists it would be great because he could sing it to her. At the end of our conversation he added, "We can only name her Matilda if she has a brain. I don't want to give that name to a baby with anencephaly." I wish I could give him back the care-free time he had when he didn't know such things existed.

Ultrasound Session

Yesterday we went to First Look Sonogram to get 3-D scans of Fisher. Normally I wouldn't have done something like that because I suspect ultrasound bothers babies. Since we won't be getting much footage of Fisher I made an exception. The two scans the doctor gave me just weren't enough.

This is what I learned from the session. First, it's good to be hydrated. The technician kept commenting on how great it was that I had enough amniotic fluid to get good images. I think it may be more related to Fisher's condition than how much water I've been drinking. Second, some kids just won't cooperate. The poor technician tried putting me in several positions to dislodge Fisher's head from the uterine wall. She even had me get on my hands and knees for a while. He wouldn't budge. In fact, it seemed as if he was trying to cover up the rest of his face. Either he'd put his hand over it or he'd grab the umbilical cord and pull it up covering part of his face. He's either shy or was upset that we were disturbing his nap. The third thing I learned is that I really needed these images for healing. The only 3-D image the perinatologist took of Fisher's face was ghastly to look at and it was the last one she showed me before sending me off to see the genetic counselor. I needed to know that he would still have an adorable face in spite of it all.

I've posted a couple of the scans from the session on the right sidebar of the page. I'd do a slide show or something like it if I could figure out Picasa Web.

Second Hospital Birthing Center Tour

This last Sunday we went on our second hospital tour. It made me love the first hospital even more. The nurse who guided us through the tour was very kind, but her answers to questions led me to believe we'd have to argue all of our choices throughout our stay. It's not that they wouldn't let us have our way. It's just that they have their way of doing things and their way, in most cases, doesn't comply with what I want for this birth. I'd so much prefer to go to the first hospital where the policies already are more in line with my own desires. I hope I get my wish.

Married to Ernie?

Sometimes I wonder if I'm not married to the Sesame Street character named Ernie. Kyle's favorite nickname for Fisher seems to be an Ernie quote, "Heeeere, Fishy, Fishy, Fishy!"

Finding Joy

When Kyle and I lost our first pregnancy at 14 weeks, the grief was intense. I remember going through a long period of darkness. I hated all the women with bulging bellies I saw on the street. Newborn babies made me cry. When people who knew of our loss tried to console us, we just wanted to run away. When others ignored our pain, we wondered if they cared at all. It was a tough, confusing time.

When Kyle and I lost our fourth pregnancy at 7 weeks it was almost as if the pregnancy never happened. Nobody knew we were expecting. It was too early for the pregnancy to show and we hadn't made an announcement. There were complications from the very beginning and we didn't expect the pregnancy to last. Emotionally I was just grumpy for the first couple of days after the miscarriage. I was so glad I didn't have to go through all the emotional turmoil of our first loss.

Now, as we look forward to Fisher's birth, it is again different. When I first learned of his diagnosis, I wanted to run away. I didn't want to go through the next few months knowing he was going to die either before or soon after birth. Somehow something changed and instead of running away, I decided to enjoy every moment I have with him. It is sometimes difficult to hear a baby cry or think of experiences we will not have with Fisher that we have had with Conrad and Donovan. However, I have found that focusing on the joys we are experiencing with friends and family has made the sorrow easier to bear.

A big hug to all who have cried and laughed with us thus far. Life is full of surprises. One of them for me has been this-that joy can be found in sorrow.

A conversation with Sophie

Eight year old Sophie turned around in the pew in front of us today. She looked at me and asked, "Do you have a baby in your belly?"

"Yes, I do. It's a baby boy," I replied.

"Does he have all his body parts?," she asked.

"No."

"What is missing?," she inquired.

"The thinking part," I responded.

"Oh. Is he going to live?"

"He won't live long, maybe just a few minutes, but I've heard of a baby like him who lived for three weeks."

"I hope he lives for three weeks. That would be better."

I told her that I was glad for the gospel because it teaches me that families can be together forever. Although I won't be able to raise Fisher right now, I have hope that we will all be with him after this life. Sophie nodded and turned back around.

This afternoon I realized Fisher isn't really missing his "thinking part". His spirit is complete and intelligent. It's just his physical body that is missing something. That will be remedied in the resurrection. In the meantime Fisher will be using his thinking part to do whatever work God has in store for him on the other side.

Do Angels Come?

The first thing Conrad asked me this morning was, "Do angels come to Earth?". I reminded him of Mary and the angel who came to her. Conrad responded, "No mom. Do they still come to Earth today? Now?". I told him that although I haven't seen one, I've heard stories about people who have. Conrad then said, "An angel is going to come to take Fisher back to heaven. I think he will come in the night so we won't see him."

Wrestling Brothers

It's in their blood. I don't think they can help it given my own family background. From what I hear, Kyle's family wasn't much different. My boys love to fight. They may call it play fighting, playing superheros, sword fighting, getting bad guys and other things but it's all the same. It's combat. For some reason, Donovan (our dark warrior) is most often the instigator. As of late, he's been including Fisher in a round-about way. Once in a while Donovan finds me lying down. He'll come up to me and say, "Where's baby Fisher?". Then he'll lift up my shirt and say, "There he is". Not long afterwards Donovan will stand up and body-slam me. He doesn't say so, but I think he's wrestling with the little guy in my belly.

Hand-me-downs

Any kid from a large family knows what hand-me-downs are. Although I only have two children, they are quite aware of the concept. Frankly our home is full of useful things that aren't being used by anybody. They could richly bless the lives of others and I'm feeling like purging, so I am. A few days ago I told Conrad one of Donovan's shirts was too small and told him to put it in a pile of give-away stuff. Conrad looked at me as if I were crazy and said, "We need to save it for Fisher". Oh, I wish I felt the same way. I wish I could be making plans for our life with Fisher while saving cute outfits for him.

The concept of time and life in general must be different for Conrad than it is for me. I recently told him I heard of an anecephalic baby who lived for three weeks. He looked at me and said, "Wow, that's a long time". Yes, maybe it is. Maybe it would be just long enough to let Fisher wear his brothers' hand-me-down, bear-bottom sleeper. Maybe it would.

1st Birth Center Tour

Last Tuesday we took our little family out to Castle Medical Center for a tour of their birthing facility. It's a hospital I've wanted to give birth at ever since I stepped foot in it over seven years ago. My opinion of the place has only improved because of the tour.

This is how Castle compares to the last place I gave birth. The staff is super friendly because they aren't rushed. Castle only delivers 500 babies a year whereas the other place delivers up to 550 per month. The recovery room Donovan and I spent time in literally felt like a closet. But, at Castle hospital the labor and delivery room is the recovery room and it feels more like staying at the Hilton. Of course I haven't actually stayed there overnight, but I imagine it would be much more quiet since there wouldn't be as many mommies and babies hanging around. Our tour guide also assured us that birth plans are important and encouraged us to bring several copies of ours along to the birth. Most of all I love the space. It would be wonderful to stay in an uncramped room.

After touring the hospital I do have some questions that I'd like to have answered. One relates to grieving. Where Donovan was born grieving mothers can be transfered to another floor away from crying babies to recover. On the tour I was brought to tears just by seeing a newborn with her daddy. I'm not sure how I'll handle it when I've actually lost Fisher. I so hope we'll be able to take him home for a few days. If not, though, I hope the hospital would consider letting me move to another area.

Another concern I'm mulling over is a choice for Fisher's pediatrician. If we do get to take him home, we'll have to have clearance from his pediatrician first. Our pediatrician doesn't have priviledges at Castle although that doesn't really matter. There is a pediatrician I've met who does though. She's a kind woman who spoke with me over the phone after we learned Fisher had anencephaly. I'm considering asking her to be Fisher's doctor even though we already have a pediatrician for our other two boys. Other questions I have can't really be answered by doctors. I've joined an anencephaly support group of families who have gone down this road before will hopefully be able to help me along.

"Don't do it. Don't say it"

I haven't hid anything from my eldest son Conrad, who is only five years old, regarding Fisher. He knows all about Fisher's diagnosis. I told him about it because he has exceptional hearing when I'm talking to my friends. Even if I were trying to hide information from him, he'd catch it. (It's funny his hearing isn't as clear when I'm asking him to do his chores.)

Conrad's initial response was surprise. He didn't know anything like that could occur. Truth be told, neither did I. But, he seemed to accept the news better than I did. However, when he finally did start hearing me tell others about Fisher, he responded more negatively. When the subject of the baby came up he would stop me and say, "Don't do it. Don't say it". At first I thought it was because he didn't want other people to know about Fisher. I couldn't have been more wrong.

When I finally asked Conrad why he always tells me not to say anything, I was surprised to learn he was bothered by my response. I cry when I tell people about Fisher's condition. He doesn't like to see his mommy cry.

I have stopped telling everyone who asks about the baby in my belly about his anencephaly. Not because of Conrad's request, but because it isn't Fisher. While it's true he has anencephaly, he is much more than that. At this point I don't know all about him. I'm curious to know him as more than his diagnosis. I know he is an energetic little guy. He has a clear schedule of activity and inactivity just like other babies. And, even though we haven't even set our eyes on him yet, he's managed to do his part to bring his parents closer to God. That's some special little guy. I'm glad he's ours.

Denial Days

It's been a week since I learned of Fisher's condition. Looking back on the last week, I realize how much I didn't want to believe in his diagnosis. I purposely scheduled denial days so I wouldn't have to face the future. Thursday was the best of them all. I took the boys to the beach to escape from my thoughts. A friend who didn't know of our sad news came along with her son.

We arrived at Queen's Beach to find plenty of distraction. There was a Hawaiian monk seal sleeping on the sand. I had never seen one of these rare creatures in the wild before (if you can call Waikiki the wild). Nearby there was a group of people congregating around a couple of beach boys who were throwing food to fish. The beach boys gave our little guys some bread to toss to the fish. When they were done, I invited Donovan to come get a closer look at the seal. The seal was surrounded by a barrier to keep people away. When I came to it, I called to Donovan to come see the seal's flippers. I was immediately shushed as if I had disturbed the other patrons in the library. I was told the seal was sleeping and had very good hearing. I thought it was hilarious at the time.

Shush! That's what I had told myself when I decided to take denial days. Yes, they were fun and I honestly think I needed the distractions they brought me. However, when I did remember and tears began to well up I wouldn't let them fall. Instead, I conveniently stored them in my neck and shoulders and put on a happy face. By the end of the first few days, the physical pain was too strong to ignore. I had to let myself cry, I had to let myself grieve. But how? How do you tell the world you have sad news? When people come up to me and pat my bulging belly, they are thinking happy thoughts. Who am I to put a damper in their day? It's too difficult for me to think about. Like Scarlet, "I'll think about it tomorrow". Maybe it is time for another denial day.

Naming Baby

He is real. He is alive. I feel him wiggle inside me several times a day. He deserves a name. He is Fisher Seiji. Fisher means, well, fisherman or one who fishes. Seiji is a Japanese name which is pronounced Say-jee. The first syllable means mind, body. The second syllable means govern, heal, peace.

Detour

Somehow I knew from the beginning. I had a very strong impression even before I conceived that something was wrong with this baby. Because of this baby, my little family has come to a detour on our journey together and we are not retreating. I hope and pray we will become better people for it.

The Diagnosis

On Tuesday of last week I went to the doctor's office for a routine five month ultrasound. I went by myself. My doctor checked and measured baby's body parts. Everything was fine until he came to baby's head. For some reason, it just didn't look right to him. I was sent to a perinatologist who confirmed my doctor's suspicions. Everything was perfect about our baby's body from his toes to his nose. However, he suffers from a lethal condition called anencephaly. The crown of his head is malformed and is missing a life-sustaining brain. If he does make it to term he may be stillborn or he may live a few minutes or days.