Losses part 2: When Things Might Have Been

Can you miss something you've never had? A casual friend of mine asked this question on her facebook page a few months back. She was referring to missing a deadline to register for the Boston Marathon, which she wanted to run, but my own mind went directly to my own missed experiences, and I answered "yes." To me, this is what grief is.

Those who have been reading my blog for the last few years know that I had a stillborn daughter in October of 2007. It has been one of the greatest challenges in my life and easily my greatest loss. For the next year or so, I experienced every holiday, birthday, and other events and important dates torn between what was and what might have been. While I tried to put on a smile for my children, my mind always turned to wondering what would have been different if my baby, Renee, had survived. I couldn't help thinking of all the "firsts" I would have experienced with her. I wondered when she would have rolled over, crawled, tasted her first solid foods, and taken her first steps.

During that time, we found out that we were expecting Isaac. He was born into our family just a little over a year after we said hello and goodbye to Renee. I had a lot of mixed emotions about trying to prepare for a new baby while I was still missing our Angel Baby. I had a hard time getting excited about a baby. Oh, but when he was born, he had my heart! I was so happy to have a perfect little boy added to our family! I really couldn't have asked for a smoother birth or a sweeter baby. We lived in blissful ignorance of what the future held for him and us. We had no idea that he had what was essentially a ticking time-bomb on his spinal cord.

Since his injury, I have found myself grieving once more. It is a strange thing when what you feel you have lost is actually still with you. Isaac did not suffer any brain damage, so from the neck up, he is exactly the same boy he was. He is sweet and affectionate, smart and silly, and of course has his own opinions, as every two year old does! But I feel as though a part of pre-injury-Isaac has died. This is the boy who climbed up chairs to find chocolate when we were visiting Grandma and Grandpa Lund this past Christmas. It's the Isaac who ran up and said, "Hi!" while I was at the stove cooking and then ran back to the bedroom to say, "Hi!" to Aaron and then did it again, and again, and again! The boy who wanted to help move a table and ended up with a black eye won't be back. The Isaac who watered flowers with me is gone. What is left is the Isaac who wishes he could water flowers and gets frustrated when he cannot grip the small watering can that he got as a Christmas gift because I knew he would love to have his own. We had great plans for gardening together this spring and summer. But that time is gone. That Isaac is gone.

I know he will go on to learn and excel in new things. He still has many positive traits and abilities that will help him get through life as a quadriplegic. He inspires me with his ability to adapt to his new body. And I am grateful to have him. I cannot express just how grateful I am. For now, the days are a mixture of this gratitude for his life and grief for what is gone. I know one day the lines that separate those emotions will blur and become unrecognizable. One day, I will look at my boy and see only the Isaac-who-is. The Isaac-who-was will always hold a special place in my heart, but he will only live there as a cherished memory.

I believe that all who grieve are experiencing this kind of loss, regardless of how "big" the loss is. We wish we would have been kinder. We wish we had taken the time to get to know someone. We think of how things would have been different, had we known what we know now. Things change and people change and sometimes feelings change. What we wanted before is no longer an option and that grieves us. We mourn for lost futures or changed or limited futures. This is what grief is for me. That feeling of loosing what I have never had, and aching for what might have been.

Searching for the New Normal

We first heard the phrase, "new normal," when we lost our daughter Renee. When something that dramatic happens, life will never go back to the normal that it had been before. It's like going from a smooth flat road to a hilly winding road. Nothing about the two roads is the same other than the fact that they are roads. Nothing can be the same about life before and after those type of events other than it's still Life. Hills and switchbacks are normal for a mountain road, but if you found them in an otherwise flat landscape, that would not be normal.

We've found ourselves again searching for that road that will allow us to move forward. Normal has escaped us for the time being. We had been traveling along our normal path and suddenly found ourselves speeding along streets we could never have known were ahead of us. The hospital had become a sort of temporary Normal for us during the 7 weeks that Isaac spent there. But we knew that wouldn't be forever and we didn't want it to be either. When we got him home, we were in the process of moving to a new home, so things didn't get a chance to get used to being home again-let alone get used to having nurses in our home, boxes of medical supplies and equipment to figure out what to do with. Even when we moved, William stayed at my parent's so he could finish the school year, so we still weren't all together for most of the week.

Now we are all together in our new apartment. I am still trying to figure out where everything fits best, and we are still trying to make some kind of schedule that works for our family. Our winding street has merged into a massive junction of freeways and city streets and ours is a complicated path. I imagine there will be a few U-turns along the way. I feel like "Normal" is close, maybe on a parallel street, but, as with many street and highway systems, seeing where you are going is often a long way from being there. We are beginning to see what our New Normal will look like, but we still haven't figured out exactly how we are supposed to get there. One day, the things we struggle with will become second nature. Then I will feel like we have found the now elusive Normal.

My miracles

*This is the first chance I've had to blog this. I wrote it on the morning of his second surgery, before we knew he would be having surgery that night.

My children are all miracles.

William was born with stubborn clubbed feet (feet that are bent inward) and a stubborn introverted personality to match it. In spite of-or perhaps because of this personality and physical limitation that he was born with, he walks, runs, plays and fights like every normal 7 year old. What he lacks in physical ability, he more than makes up for in mental ability. he has always been a very bright boy who excells in math and science and has a thirst for knowledge in all areas. His miracle is his lack of disabilities.

Leonora was born perfect. She was like a beautiful porcelin doll. I cannot even begin to count the numorous peoplew who would pause in grocery stores and other public places to tell me how beautiful my baby was and how doll-like she was. Once, an older lady in Walmart nearly ran me over with one of those electric riding carts. She thought that Leonora was a doll in a carseat until she saw Leonora move. She was so shocked, she swerved and nearly collided with my cart! Shortly before her 2nd birthday, Leonora got pneumonia. Our whole family had had the flu, but as the rest of us got better, Leonora continued to worsen. She was admitted to the local hospital and then lifeflighted to Primary Children's Hospital. Her combined hospital stays were a full two weeks. We were so worried for her during that time, but she fought through it and was blessed to avoid more serious srgery to remove a part of her lung. Today she has an incredible amount of energy. Sometimes it drives us all a little crazy, but she is also full of love. Her healing from the pneumonia, her high energy, and her boundless love for all those she meets (and often those she hasn't) are Leonora's miracle.

When we found out that we were expecting another child just after Leonora's 1st birthday, we were exited and happy. I felt this baby's movements earlier and stronger than with either of my previous pregnancies. At about 20 weeks gestation, Aaron and I went to the hospital for the standard, mid-pregnancy ultrasound. This is when most people find out the gender of their baby. It's something moms anticipate and look forward to. For us, it was the first chance to see our baby. Because of our issues with William's feet, clubbed feet was at the top of my list of concerns. Our baby showed no signs of this deformity, but something more serious. She had a cyst at the back of her head, and her body was retaining fluids. Her kidneys had already ceased to function. At or first look at our baby, her time on this Earth was coming to a close. Her heart continued to beat for about 2 1/2 weeks before her sweet spirit returned to Heavenly Father. At about 23 weeks gestation, the doctor induced labor, and out sweet angel was born. Her birth should have been a great time of joy. Instead, it was our greatest loss. It is impossible to explain the sorrow of loosing a child to anyone who hasn't experienced it. I feel it is the greatest blow a parent can experience. Despite this heartache that consumed my life for many months, I feel that our angel, Renee, is a great miracle in my life. Having greater understanding of this sorrow has given me greater empathy when those I know have lost children. It has proven that I can get trhough more than I thought I ever could. It eventually gave me strength. Renee means "reborn." I believe that not only will she be reborn into a new and perfect body fit for such a strong spirit, but her presance in our family has been a sort of familial rebirth. She changed how we function as a family-for the better. I believe she was given that body because she was one of the few spirits who could suport it for that long. Her condition is a common cause for early miscarraiges, so reaching the point of having a fully formed body is unusual. She was a miracle.

About 6 months after we lost Renee, we found that we were expecting again. There were a lot of mixed emotions about that news, but in general, I was happy about it. We had extra tests that we hadn't had before just to give us reassurance that everything was okay. A few months after the 1st anneversary of Renee's birth and death, Isaac was born. He had perfect timing! He was born early (unlike my other children), and easily. I was overcome with joy and relief the first time I held him in my arms. I sobbed and cried and held him close. I didn't want to miss anything about him-the way he looked, sounded, smelled, and the weight of him in my arms. We picked the name Isaac because it means "laughter," and his middle name Nathan (after his two uncles) means "gift." He was our gift of laughter, sunshine, joy, and hope. He continued to live up to his name. I often say he was born smiling. i think I recorded is first responsive smile (one that was made in reaction to my own smile) at about 3 weeks old. As he grew, he developed normally. There was nothing exceptional about when he first walked or said his first word, yet his pleasant deminor, quick smile, beautiful eyes, and adorable dimples, made him exceptional in every way. As soon as he could walk, he became my biggest helper. He always wanted to sweep and vacuum with me and help me with dishes and laundry. With Isaac, house work could even be fun! He has been my biggest miracle. He gave me everything and more than I had lost when Renee's heart stopped beating. My other children have always brought me joy, but giving happiness seemed to be Isaac's life mission.
Today is Monday, March 7th, 2011. We have been in a hospital since I took Isaac to the ER on Friday night. He had lost movement in his right arm and leg. He had been getting over a cold, so it was originally thought that he may have pneumonia, menengitis, or both. When he was getting worse, the doctor decided he needed to be life flighted to Primary Children's Hospital. By the time we arrived at Children's, Isaac had not been moving much at all for sometime. His movement and responsiveness continued to decrease. It was decided that this was a nuerological issue and to find out for sure what was going on, he needed an MRI. They told me it would be about 2 hours for the MRI. About 3 1/2 hours later, he finally returned and I was given bad news. He had an AVM burst (a malformation of blood vessels that causes them to be weak). His AVM was located on his upper spinal cord which is why it caused his immobility. Emergency surgery was done to relieve swelling of his spinal cord. I was told that there was a significant possibility that he could bleed during surgery and that if there were bleeding, there may not be any way to stop it. As a mother who has lost one child, I understood too well what they were telling me. We were told he'd made it through with only minor complications when his heart rate and breathing slowed to extremely low levels. When we recieved the news that he made it through, there was a huge sigh of relief from me and my friends and family present in the room. I felt we had recieved another miracle. Now he lays in bed. He occasionally opens his eyes, turns his head and has had some small movements in his arms. These too are small miracles; however, there is no gaurentee that he will be able to do basic things on his own ever again. Even breathing on his own may never be a possibility. The good news is, he has no brain damage. It is only in his upper spine, which affects all the nerves that control his motor function.
Right now, we are praying for a bigger miracle than we have yet recieved. I deparately want my little boy to be whole again. I know that through God all things are possible if it is in accordance to his plan. I can only hope and pray that is plan and my desires match up. I also know that miracles take faith it takes. Please join your faith and prayers with ours for the recovery of Isaac. Pray for us and his doctors to know how to help him. Pray for us all to have the strength to get trhough this and to accept the outcome-whatever it is. Pray for us to see and accept God's plan for our family. Every prayer and good thought sent our way helps. We are so appreciative of all the love, support, and prayers we have received. They keep us going. Please keep sending them. Thank you so much.


*Since I wrote this, there has been one more surgery to remove the AVM. We have been very blessed to have amazing doctors, nurses, and others to take care of Isaac. He has been more alert. Some days are better than others, but he has smiled and moved his arms more. Today he will have a Tracheotomy to help him breath. He has been on a ventilator with a tube in his mouth, and we are anxious and excited to have this procedure done. hopefully he will be able to start intensive rehabilitation in a few days.

Adversity

Maybe it's because I'm getting older. Maybe I'm just more aware. Maybe there's more heartache in the world today. It seems like everyday I come across more stories of distress, more pain, more grief. I feel like I've experienced my share of all of this, but when I look around and see others struggling with their own hardships, I sometimes think things aren't so bad for me. Maybe it's just that I'm not grieving anymore. I struggle with life's ups and downs like anyone, of course. It's just that now I'm through it, now that the worst things I've had to face are past, my own life seems much brighter. Now I find that most of my tears and worries are for others. Other mothers who have lost babies, the young mother who is now a young widow, illnesses-sometimes terminal-that never care how old or young their victims are, accidents, divorce, and other tragedies seem to be everywhere. Adversity is inescapable. Yet, I am living proof that it doesn't go on forever.

It's not as though I woke up one day and went, "huh, I think I'm all better now! What a great experience that was!" It was all very gradual. One day, I smiled, and thought it felt strange. But it became less strange as the phenomenon repeated itself. Then one day I laughed and remembered what it was like to feel happy. As time went on, I was able to visit with friends and family without constantly thinking of how things could have been different. Then one day I was surprised to discover that I had recovered and that things looked much better, but the change had been so gradual, I could not pick out a moment or day that things were suddenly better.

It was still a little while before I could feel like my own suffering served some purpose. I had faith that it did, but I couldn't even begin to fathom what that purpose was. Even now, I can't claim to fully understand the reasons for my own trials, but I have begun to see some purpose in them. Probably one of the greatest things they have given me is understanding. Sometimes it seems a little crazy to be grateful for understanding someone's suffering, but without that understanding, it is difficult to show compassion. It happens all the time where some well meaning individual makes things worse while trying to comfort someone who is grieving. Understanding leads to compassion. Compassion leads to healing. Healing leads to understanding. There was nothing more comforting to me than to feel that someone understood my pain.

Another comfort to me is that I have always felt that life has a plan. There is nothing that comes our way that doesn't have a purpose. Sometimes the reason is clear, but most of the time, it isn't. So we muddle through as best as we can until we are able to emerge from the fog and see things clearly again. When I think about this, I often think of my son William's surgeries. William was born with a fairly severe case of bi-lateral clubbed feet-meaning both of his feet were bent and turned inward and upward. We tried casting his feet for the first 10 months of his life to see if they could be manually forced to point forward. The casting helped, but not enough. So then there was surgery. He was only 10 months old for his first surgery and 11 months for his second (a follow-up of the first). He quickly healed and forgot those procedures. Two years later, he had another surgery. We knew it would be harder on him than his first two were, but took some comfort in knowing that he at least didn't remember the first time, and would have fewer fears before the operation. He happily went off to the operating room. Of course, the return trip was not so happy. So when he had to have a fourth surgery last spring, we knew it would be tough on him. We explained to him what would happen, and quickly saw his fear in his expression. We tried to reassure him that everything would be okay, and tried to answer his repeated "why's." Ultimately, it was difficult for him to understand our explanations. He couldn't understand that although he could walk, this would help him walk better. And we knew he could run, but this would help him run faster and trip less. His focus was only on the extreme pain and inconvenience of the surgery and subsequent recovery. Of course, we wanted to help make the experience as comfortable as possible, but we knew he was going to have to suffer and that his suffering was necessary for him to be able to improve and grow.

I imagine that this is similar to how Heavenly Father feels as He witnesses our suffering. He knows that the pains we have will help us to grow and change and ultimately bless our lives. Of course He does not wish for us to suffer, but he knows it is necessary for us to progress and improve.

It's still hard for me to view certain trials as a blessing, but I do feel that the things I have learned and the ways I have grown have been blessings. I know that who I am today is directly related to those experiences. It is true-adversity does make us stronger. It makes us kinder. It gives us more perspective and sympathy for those around us. It shapes our lives. So, as I watch those I know struggling through the metamorphic change that adversity brings, I try to help them. I know that they will need help to get through their struggles because we all do! But I also know that ultimately, they will be better for the trouble they experience. They may not know today or tomorrow or even next year what the purpose of their struggles is, but there is a purpose. God may allow us to suffer, but I believe that He does not let us suffer needlessly.

Just an experience I wanted to share...

Sunday, I went to the cemetary to remove the evergreen wreath and replace it with a valentines themed one. The new one probably won't be there for too long, but the Christmas one needed to come down. Anyway, I often see one or two other people visiting the cemetary when I go, especially on Sunday afternoons, however, yesterday was a very wet and rainy day here. I probably wouldn't have gone if it weren't the only practical day for me to go before Valentine's. I really didn't expect to see anyone there in the rain, but while I was hanging the new wreath, someone drove to the next cemetary "block" over and stood by a new grave. I knew that there had been a funeral on Saturday. The man who died has a daughter in my high school graduating class. She isn't someone I knew well, but in a graduating class of only 130 students, it's unusual not to at least know names and faces. It was her that I saw standing by the grave.

One of the things I've gotten out of my experience with Renee is a deep sympathy for others' grief. When I see people experiencing a big loss in their life, I just really want to help them. Of course, I always felt bad for people before, but I think I aproached it differently than I used to. There are so many thing that people say that help so little. In fact there are a lot of things that people say with good intentions that end up just making a person feel worse. The things that helped me were those looks from certain people. I have no idea what some of these people's experiences have been, but there's a look that people who have felt a terrible loss have when they tell you they are sorry about your loss. I don't really know how to explain it, but you just know that they've been through these emotions before. It's a look of understanding and compasion. Those looks, along with brief expressions of sympathy, gave me much more comfort than anything that anyone said. I know that I'll see Renee again. After she was burried, I "knew" that someday I wouldn't feel so miserable, but I couldn't see the end of my grief. I was told that the first year is the worst, but I couldn't imagine waking up after that first anniversary was past and feeling better about my daughter being gone. Seeing that look was a testimony to me that there would be a time I'd feel better about it. It was a look that said, "Yes, what you are going through is terrible, but it will pass. I know because I've been there." I imagine that it's the look Christ would give us if we were telling him about our trials face to face.

So when I saw my former classmate standing over her father's grave, I felt compelled to at least attempt to give her some of what had helped me. I didn't say much. Her grief is still very new, so I doubt she remembers much of what I did say, but I hope that I was able to share with her some of what was shared with me. Some Hope for the future, and, even if it was only for a few minutes, a friend.

Seasons

As each season changes, so does the decor around our homes and neighborhoods. Of all the seasons, I think the change from fall leaves to Christmas boughs is most noticable. There is nothing shy about the way Christmas enters the scene. On November first, the only pumkins and fall leaves you'll see are in clearance bins, and every retail and grocery store is sure to be decked in red and green. I know this bothers a lot of people, but personally, I don't mind it. I do think that Thanksgiving is an important holiday, but the decor is much less festive. Besides, what's wrong with evergreen boughs being part of Thanksgiving? Anyway, I haven't gotten out many holiday decorations yet. I don't have lights, tree or nativity set up. I don't have any holiday wreaths or garlands around my home. But Sunday, I took care of the first item on my holiday to do list. For the last year, the decorations in my home have been second. The first place the season's change for me is at the cemetary where Renee is buried. There we have a small crook where I hang a wreath to match the season. For some reason, this makes her feel so much more a part of the celebration. A part of our lives. At times when I haven't been able to do this small thing, it has weighed on me. I feel like I'm ignoring her, or too busy for her. Even though I know she is not really there, it helps me to acknowledge her presence in my family. And in some ways, it feels like a gift that I give to her. It's one way I remember her, and show my love for her.

Happy Halloween!

So, I thought that this morning I would spend a little time updating my blog and telling you about the picture of the pumpkins in the title, or whatever that box is called...

We carved pumpkins way too early this year, but there was (I think) a good reason for it. The 16th of October is the day that we found out Renee's heart had stopped beating. It's always good for me to have something to do to remember her on anniversary days like that, so I had decided I wanted to carve a pumpkin for her.

William was very excited about this! He picked what face he wanted from his "Five Little Pumpkins" book.

Leonora seemed excited initially, but got a little bored by the time we got one pumpkin done!

She spent a bit of time collecting leaves instead.

Here we are cleaning out William's pumpkin. The kids did a lot of "ewww"ing at the goo from inside. Aaron has a strong dislike for this part of pumpkin carving, so he was the official photographer. I guess he wanted to be included in the picture though, so there's his foot.

Leonora completely missed the carving of her pumpkin, but came back to see Renee's white pumpkin hallowed out.

She also helped a little with the candles and clean-up!

And here's the final product! Including my nice shadow! The kids sat out on the porch watching the glowing pumpkins until bedtime.

Unfortunately only Leonora's has made it to halloween. I think I might have accidentally gotten a baking pumpkin instead of a carving pumkin for her. It was really difficult to carve, but has lasted longer.

Things to remember

This was a q&a, and I had wanted to post it for Renee's birthday, but I'm going to post it now.

Heidi asked what I want to remember about Renee. Sometimes it's hard to be grateful for the time we had with her, knowing that we have and will continue to miss out on so much. But there are things that I want to remember. I guess I will start at the beginning.

I remember how happy Aaron and I both were when we found out that I was pregnant. Aaron's reaction is usually a calm sort of "okay." He doesn't usually get all that excited about a possitive pregnancy test. When I told him it was possitive that time, he got a big grin and got almost a little silly! It was one of those really happy moments.

We both felt really good about having another baby. I can't say that there were no struggles during that time, but overall, it was a good time for our family. There were moments that I worried a little about the baby, but they never lasted long. In retrospect, they all make sense with what was going on with her, but I was happy just to be having a baby, and everything was easy enough to pass off as normal. I was really laid back and just enjoyed the pregnancy. I began feeling her earlier than I had with my others. I'm not sure exactly when, but I think probably somewhere in the 12-15 week range. That's something I wish I had recorded/remembered.

Shortly after we found out that she was having problems, I had a dream about her. It's the only dream I've had about her. I wish I could remember her face more clearly. I imagine that it's what she would have looked like. I do remember her eyes though. They were dark and smiling. She was happy in my dream.

When she was born, she was very small, but very well developed. Her body was swollen because her kidneys had stopped working to expell fluids from her body. There were very few parts of her body that looked the way they should have. But she was all there. Ten fingers, ten toes, as they say. Actually her fingers and toes are some of the most memorable, because they were some of the least swollen. I remember the palm of her hand covered the tip of my index finger. I loved the way her fingers curled down around the tip of my finger. I wish I had a picture or something of her hands, but somehow they got left out. They tried to do hand prints, but she was very delicate and they were only able to get prints of her feet. The hospital gave us a few things in a box for her: a blanket that she had been wrapped in, a card with all her measurments, time of birth, foot prints, and picture of her foot, a little hat that although would be far too small for a full term baby, was huge on her, and a few other things. These objects that she had contact with have been very comforting at times when I want to remember her physical presence.

Renee's memory box and card

I remember the presence I felt during my pregnancy, and the confirmations I've recieved that she will be reunited with our family again someday. She has a strong spirit, and I know she's doing what she needs to. I feel blessed and honored to have her as my daughter and am only sad for the time I haven't gotten to spend with her.

Q&A from Heidi

Q: What kind of advice would you give to those around you trying to comfort you?

A: This is a hard question to answer, but also an important one. What makes it difficult to answer is that at different times, I've needed different things, and it's difficult to predict what I will need in the future.

When we lost Renee, the social worker at the hospital recommended a book to us called Tear Soup. Since then, I've recommended it to several people. I really love this book, and think everyone should read it. It talks about grief in simple and general terms that are easy to understand even for a child. It's also short, so it's easy to get through even for those who aren't the best of readers. And it has pictures!

It's a richly illustrated story about Grandy. Grandy has suffered a loss. Her loss is never described, but it really doesn't matter, because every loss is significant to the one who experiences it. Grandy's grief is compared to making soup. This soup is mostly comprised of her tears. There's a page that shows different friends showing up to "help" Grandy. And another where a friend calls to tell Grandy about her terrible experience. While her friends certainly care about her, and are doing their best to help, what Grandy really needs is her one friend who will sit and listen to Grandy. This one friend is named Midge. Midge listens to Grandy and eats her soup with her. She also helps get Grandy out of the house, but doesn't expect her to get over her loss. She allows Grandy to have her experience and simply supports her through her loss. Midge is the friend that every grieving person needs. At the end of the book, there are lists of things to do if you are the "cook" or a friend of the cook, a child or a male chef. I found these lists online at this site. Here is the one for friends:

If your friend is the one who is making tear soup

~Be there for your friend, even when you don't understand.
~Be a source of comfort by listening, laughing, and crying.
~Stick close to your friend and defend their right to grieve.
~Allow your friend to make mistakes... or at least to grieve differently from the way you would grieve.
~Send flowers. Send money if you know this would help.
~Send cards. The message doesn't need to be long. Just let them know you haven't forgotten them. Send one every few weeks for a while.
~Call your friend. Don't worry about being a bother. Let your friend tell you if they don't want to talk about their loss right now.
~Answering machines and e-mail are great ways to keep in touch, allowing the bereaved person to respond only when they feel up to it.
~Try to anticipate what your friend may need. Bereaved persons sometimes don't know what to ask for.
~Avoid offering easy answers and platitudes. This only invalidates the grief. Be patient. Don't try to rush your friend through their grief.
~Give your friend permission to grieve in front of you. Don't change the subject or tell them not to cry or act uncomfortable when they do cry.
~Ask them questions. But don't tell them how they should feel.
~Invite your friend to attend events together, as you normally would. Let them decide if they don't want to attend.
~Don't assume because your friend is having a good day that it means they are over their loss.
~Be mindful of holidays, birthdays and anniversaries.

All these things have been helpful to me at some point, and I think they are good general rules to follow. Although my pot of soup has gotten closer to being done, I still have a lot of things to get through. I think the thing that helps me best is when people don't assume I am done grieving. Or tell me that I should be. I don't expect people to understand what I continue to experience, but I like to know that people want to understand. I think sometimes people are afraid to ask questions. They are afraid it will be hurtful to remember, but what I've needed is for Renee to be remembered. I have very little proof of her existance here, so it's very important for me to know that someone else does remember her.

Thank You to those who have been brave enough to ask. It has helped me more than you could know!

Q&A: Kris's Question

Aaron's aunt Kris (aka "the Clayton Clan") asked this question:

Q: Have you given any thought to the fact that of the two babies that have died in our family (Lund) that they were both in Wayne's family?

A: So, this is an interesting question for me! For those who don't know, Aaron's parents also lost a baby. He would be about a year younger than Aaron and was about the same gestational age as Renee. His name is Nathen. Aaron's mom Jenny had had a lot of bleeding during her pregnancy. I think it was from placental abruption. My understanding is that she was at a lot of risk because of the bleeding, which is why they allowed her to go into labor. Nathen was born live. I asked Aaron and he thought he continued breathing for about 15 minutes. At the time of Renee's birth/death, we did talk with Wayne and Jenny quite a bit about similarities and differences between our two experiences. The timing was almost exactly the same, but the causes were very different. While Jenny's pregnancy had been very difficult and dangerous for her, mine had been one of the least eventful. I had no symptoms of anything being wrong other than measuring a little off. Nathen had no genetic problems. He was born perfect, just too young to survive. Renee had a lot of physical problems which caused her to look different than a normal, healthy baby. Not like she had a third arm or anything, but she was very swollen.

I'm not really sure why it happened the way it did. Maybe it's just conicidence that we both had similar experiences. Or maybe it happened this way so we could empathize with each other. Maybe someone is supposed to learn something. Maybe we're all supposed to learn something different. I've learned we each deal with our own losses very differently. Aaron and I cope differently, as have Wayne and Jenny. Although they cannot make our loss easier, it is nice to know we aren't the only ones who have had to go through this.

Q&A: a couple of Saskia's questions

Q: What was your first reaction when you found out what happened, did you blame yourself?

A: When we had the first ultrasound, my reaction was a combination of shock and dread, and a need to find out anything I could about my baby's condition. I cried a lot. I had some hope that something could be done for her. I wanted everything to be okay. Renee had what's called Cystic Hygroma. Basically a cyst at the back of her head/neck. This, and that she might have Turner's Syndrom was all the information that we got at the ultrasound. Cysts appear and disappear on baby's heads all the time without any serious consequences, and some Turner's baby's do survive. So I was hopeful. I was able to get a copy of the ultrasound report, and my midwife helped me understand what it was saying. After reading the report, it was a lot more difficult to be hopeful. What I found out was that she also had Hydrops-basically she was retaining water- and very low amniotic fluid. This combination was a sign that her body was shutting down. Her kidneys were not working right, and there were likely to be other issues as well. Even knowing this before hand, it was extremely difficult to hear from the doctor at our next ultrasound that there was no possibility of survival. No one wants to hear that, even if they expect to hear bad news. I cried a lot, prayed a lot, and tried to find out what our options were. It was heartbreaking.

It was about a month after her birth that we found out for certain that it was Turner's Syndrom that had caused her problems. It was the result that we expected. Everything had pointed to Turner's. I still cried. Maybe I was lucky in some ways. Since I know what caused her death, it's much easier not to wonder if there was anything I did to cause it, or anything I should have done to prevent it. Turner's is a random genetic mutation. There's nothing we could have done to cause or prevent it. During some of his particularly depressed times, Aaron has blamed himself, saying that he didn't deserve her, and that's why it happened. I personally don't feel that God works that way. Bad things can happen to good people, and good things can happen to bad people. I've never been into finding someone or something to blame. This is just the way it is. I hope someday to have a clearer understanding of why this happened, what purpose it served, and what I'm supposed to get out of it, but don't feel the need to blame myself or anyone else.

Q&A

I originally got the idea for a Q&A when Heidi emailed me with a question, so I'm going to start with her's. I realized how much easier it is to talk about when I have a specific question, so here it is! Thanks to those who sent questions, please send more! :)

Q: How does it feel to be pregnant again after losing Renee?

A: I've actually had two losses. The first was earlier on. It was my first pregnancy, and I really didn't know what to expect from pregnancy, let alone losing one. I was about 8 weeks when we had that ultrasound which showed no heartbeat. It showed the baby had stopped growing around 5 weeks-barely into pregnancy. Anyway, it was something that was difficult for me. I didn't have anyone that I really felt like I could talk to about it, which is something that probably would have helped a lot. Since it was my first experience with "labor," one of the biggest effects it had on me was being afraid of how actual labor would be. Up until William's birth, I could vividly recall the pain from my miscarriage. I got pregnant with William six months later, and by that time was feeling pretty good about things. I wasn't worried about complications, other than the fear of labor. Somehow, I managed to go through with an unmedicated labor anyway, and when I held William for the first time, I felt completely healed. Those wonderful hormones that erase our memories of childbirth also took away all the pain I had experienced with my miscarraige. I've wondered if William and my first pregnancy were the same spirit. I've never had what I'd consider confirmation of this, but I have thought that maybe it was him.

I feel like Renee's loss has been very different. Before her birth, I remember praying, asking why-a dangerous question, I know, but I was really, just trying to find some purpose in this tragic event. I got my answer. I felt very strongly at the time (and still do) that Renee just needed a body, and that the one she had would serve that purpose. I've had a few people who have suggested that her spirit may come in another body, but I just don't feel that this is the case with her. That body was sufficiant for her. This is something that's bittersweet to me. On one hand, I feel like she is my child and is sealed to me. On the other, it's heartbreaking to know that I will not have the opportunity to see her in this life.

The first time, I was disappointed and sad about losing my pregnancy. With Renee, I feel like I've lost a child. Her loss has made this pregnancy more frightening for me. A lot of people adivise to get pregnant as soon as you can after a loss. They say it helps to heal or something. That was true with my first experience, but has not been this time. Although, I think everything will turn out okay, I have had more than one moment where I've been afraid of losing this baby as well. In the past, I've said, "no thanks" to any genetic testing. I just didn't see any purpose in it. This time, I've felt like I needed some reassurance. I think I would have been going completely crazy if I hadn't already had a few ultrasounds that have shown a healthy baby.

Just as each pregnancy and baby are unique, each loss is also.

An Invitation

So, that last post is a bit depressing, or depressed at least. We've had a lot of that going around our house lately. It's been a difficult time, but it hasn't all been bad. I think I'm going to be posting a lot about this over the next month or more, and hopefully, it won't all be horribly depressing! I'm hoping that by posting about Renee a little more often, I won't have that build up of emotions that was let loose in the last post. And I'm going to need your help! I'd like to do a sort of Q&A for Renee. I feel a bit at a loss as to how to begin to talk about her, and I think I've put it off for too long, so I need your help! I'm inviting you all to ask me anything. You can ask anything from how it's affecting me, to how she looked. You can post your questions as comments or send them to me in an email.

Thank you in advance! I appriciate your help.

Remembering

Once again I find myself feeling like a bad blogger! In case you haven't noticed, I haven't been posting terribly often. Although, I have to remind myself, it's still been much more often than when I first started! Ha, ha! I'm not a complete blogging failure! :) But I have slowed down a bit lately. The reason is not for lack of material. My kids still do silly, cute, or brag-able things, I really need to finish mine and Aaron's story, Andrea tagged me, and if all else failed, I could complain about housework! Not that the last one would be exciting, but at least I would be posting. The truth is, there's only one thing I want to post about. I've been wanting to post about it for a while, but have a hard time sitting down and doing it. It's not happy or fun like all the other things I could be posting about. But it is important. I feel the need to write it down, to process, and discuss.

It's been almost a year since we went in for Renee's first ultrasound. October 1st will mark one year since we found out that something was wrong. The following week was spent reading articles online and comparing them with the ultrasound report. On October 7th, we had another ultrasound that confirmed our baby would not live long regardless of any choices we made. We spent a little over a week trying to make some kind of decision about whether to wait until her heart stopped beating on it's own, or to induce labor while she was still alive. Sometime between that second ultrasound and the third, that choice was taken out of our hands. By the 16th, her heart had stopped beating. Then it was only a choice to wait and see if my body went into labor in the next couple of weeks, or to induce. I had had no signs or symptoms of labor, and waiting longer could have had negetive effects on my health, not to mention the emotional pain of carrying a child I knew was no longer living. We decided sooner was better, and scheduled the induction for the next day. She was born on the afternoon of October 18th.

Every child has firsts. Baby's first smile, word, tooth, step. Baby's first holiday's, and of course, first birthday. We have no way of knowing when Renee would have cut her first tooth, or said her first word, but every holiday and family event reminds us of the daughter who isn't there. Being pregnant has been hard for this reason. Every kick I feel, or ache or pain, and my growing belly, have been reminders of my last pregnancy. I'm now in my 22+ weeks pregnant-exactly how far I got into Renee's pregnancy. The last couple of weeks have been especially difficult emotionally. While I am glad to say that so far, things seem to be going well with this baby, every symptom I feel is a reminder of my last pregnancy and how abruptly it ended. It is difficult to celebrate when I feel I am still mourning Renee's loss.

As people begin to notice my pregnancy more, I am continually hearing this baby refered to as our third. I find myself saying the same words, for the sake of simplicity, and feeling horrible for it. You see, I already have three children. Two of them live with me, and one with God.

I need to remember her. And I need her to be remembered.

Something I made

Aaron and I went shopping for some nice fake flowers on our date last week. We were lucky and caught the last half hour of the 60% off sale at Micheal's craft store. We picked out a heart shaped wreath and some flowers. On Sunday, I spent a little time putting it all together and later took the wreath to Renee's grave. I thought it looked nice, so I took a picture.

Mixed emotions

Today was Renee's due date. I'm glad that Leonora is home and doing better, but I can't help remembering that I would have had another baby to "bring home" if things had been different. It's occured to me that the last three weeks would have been more difficult if I had been pregnant or had a newborn, but it's not much consolation. It's nice to have William and Leonora back home with us, but I don't feel like our family is all together. It's been a hard day for me.

Four Weeks (disclaimer:this may be depressing!)

Four weeks ago today our daughter Renee was born still. I wish more than anything that she were still here with me.

We finally got the results to the chromosome tests they did. Renee had Turner's Syndrom and was missing an X chromosome. Turner's Syndrom is not necesarily fatal, but can have a variety of health conditions that are. The combination of complications in Renee's case was. The good news is that there is a less than 1% chance of it repeating in a future pregnancy.

It doesn't really make anything better though. She's still gone.

From Stressed to Blessed

With everything we've been going through, Aaron has had a hard time being productive at work, and unfortunatly, his is not a job that you get paid for just showing up. He has to be able to sell cars-which is something he hasn't been able to do since the first week of October. We knew we would not be getting the usual paycheck on the 5th, which meant we didn't have money for rent. However, yesterday, the general manager at the dealership called Aaron into his office to ask how we were getting by without that paycheck. Aaron told them we wouldn't have rent money, and the gm said that he would take care of that.
We have been so incredibly blessed! A little over a year ago, I remember saying in church that when we do the things that God wants us to, we will be blessed and that things will always turn out better than they would have. At the time, I remember just trying to convince myself that we were doing the right thing. We had broken our lease to move to from Seattle to Sacramento with Aaron's parents. Leonora was only 6 weeks old at the time, and I was still recovering from her birth. I was emotional and very stressed about moving in with his family. Living there-even for that short time-was very difficult for me. His parents are good people, but I come from an extremely different background than Aaron. Even though we were in more or less the same situation when we moved to Utah, I was very grateful to be back at my parent's house. Since then, we've moved out, Aaron has changed jobs, and we've said hello and goodbye to another child. We've been through a lot. Now looking back, I wouldn't change any of the choices that we've made that led us to this point.
I'm so grateful to be near my family. I don't know what we would have done if we were anywhere else. Because we are here, we were able to use a burial plot that my parents had already purchased. It saved us money, and Renee is in a place where there will always be family. Aaron's work has been incredible. They sent flowers to the hospital and collected money to help out with things. And now they are paying our rent. I'm so glad Aaron is working there. The dealership he originally started at in St George would never have done all of that. Not to mention that they don't pay anything toward family health insurance. We have already payed the maximum out of pocket after everything that the insurance has paid. I can't imagine where we would be if we'd gone through all this without health insurance. I'm just so glad that we are where we are. It's not where we planned we would be.
Another thing we weren't planning was getting pregnant. In fact, I had tried to get an IUD before we moved from Seattle because I didn't want to worry about pregnancy. When that didn't happen, I was quite upset. Now I am grateful. Although I am devistated by the loss of our baby, I cannot imagine her being left out of our family! Renee's presence in our family has caused me to think differently about how we will plan our future pregnancies. I'm not saying I won't use any birth control, but I think we will be using forms that will alow us to make a decision when we feel it is right-rather than forms that require a doctor's visit or a certain amount of time to lapse.
Now, more than ever, I believe those things I was trying to talk myself into last summer. That God does have a plan for us. He knows the things that will help us grow into who we need to be. If we follow His plan, we will be blessed.

This is a picture of our family at the cemetary after the graveside service.

Edit note: The other picture was really small, but I found a bigger version of the same thing.

Renee

This is Renee's foot and my finger.