Sunday, December 27, 2009

The cruelties continue... but so does hope.

When we lost Keller, it felt like one cruelty after another. I had to deliver Keller even though I knew he had already died. I spent over 12 hours in labor just to deliver a baby whom I knew would never cry. Matt and I spent our first night in the hospital making decisions about the delivery of our son and deciding what to do with his body. Instead of bringing our baby home, we waited for friends to bring his ashes to us so that we could hold a memorial service for him. Keller did not have a baptism, he didn't accompany us to the new house, and he didn't open any gifts at Christmas. His glaring absence makes it feel like we lose him again every day.

This Christmas was difficult for me in a lot of ways. I was prepared to be overwhelmed by all the sights, sounds, and emotions. I knew that I would have a difficult time with all of the people, but I wasn't prepared for the emotions that I felt as Matt and I drove to his parents' house. I just couldn't believe that Keller was not in the backseat, on his way to his first big holiday at Grandma's. When I think about Christmas, the first image that pops into my mind is one of kids opening gifts with a big mountain of wrapping paper growing up around them. Kids are a big part of what makes Christmas fun and without them, it's really kind of lackluster. For me, Christmas felt cruel because we couldn't share it with the one person that truly mattered, our child.

One thing that really struck me at Christmas is that it is going to be a very long time until Matt and I have a living child. Even if I get pregnant in the next few months, Matt and I won't hold our baby until October at the earliest. I just can't believe that it will be nearly an entire year from now until Matt and I bring our own baby home. In the meantime, it feels like everyone we know is giving birth to their babies. Most of the people we know are having baby boys, which is even more difficult because we see what we are missing. We should be joining them in the joy and excitement of raising a son. Instead we are moving through grief and longing for the day that we will experience parenthood for ourselves.

In the midst of all of this, I am proud to say that Matt and I still have hope. Even though it seems like it will be forever until we have a living child of our own, we are sure that the day will come. I wouldn't say that we are necessarily trying to have a baby right now, but we have decided to stop trying to prevent a pregnancy. Trying to prevent me from getting pregnant was not helping my mental health at all and I truly believe that I will get pregnant when the time is right for us. While I struggle with the sheer length of time I will have to wait, and my impending 30th birthday coming in May doesn't help, I am confident that Matt and I will welcome a new baby into our home sometime in 2010.

However, being hopeful does have it's difficult days. To me, having hope requires a certain amount of faith and my faith has been repeatedly tested over the past few months. There are some days when I feel forsaken by God. Not targeted per se, but forgotten and overlooked. I will admit that I am somewhat afraid to place my full faith in Him because the last thing I put in His hands was my pregnancy with Keller. God and I definitely have some "trust issues" to work out and I am committed to working through my grief and confusion with the help of the same God that I struggle to trust. I think a lot of people can identify with me because most of us have had our own struggles with faith and trust at some point in our lives.

Part of the reason that I still have hope is because I know that I don't have all the answers. I don't know why Keller didn't survive and I probably will never know exactly what happened. I do know that I want to move forward with my life, as difficult as that is on most days. I trust God to provide me with the healing and strength to rise above my grief and live a life that is an honor to both God and my son.

As I move forward and examine my own feelings about hope and faith, I realize that I hate the phrase, "Don't get your hopes up." My answer to that is, "Why shouldn't you get your hopes up?" What real harm is there in having high hopes? And isn't it awesome that people in Matt and I's position still have hope at all? Sure, having high hopes means that if things don't work out, it will hurt a lot, maybe even more than if we didn't have hope at all. But wouldn't it be better to have some hope and risk losing it, than not having hope and still being disappointed? I, for one, like the feeling of being hopeful, even if things don't work out.

Time marches on for me and I wait with anticipation for the blessings that 2010 will bring. I have several goals for the upcoming year although I am hesitant to call them "resolutions." My main goal for 2010 is to focus more on myself and my husband. I realize that I can be somewhat externally focused and that can be exhausting. I plan to place more energy and effort into my marriage and the family that I am building with Matt. My second goal is to become more faithful and dedicated in my walk with God. I honestly believe that the energy I put into my second goal will improve my ability to achieve my primary goal. Beyond that, I want to improve my overall physical health, clean up my finances, and explore my creativity in new and exciting ways.

My prayer for 2010 is that it will be a time for continued healing for my bruised and battered family. I pray that I will conquer some of the difficulties that I have been facing and that my efforts to regain my emotional strength would be successful. My prayer for my family, friends, and community is that everyone would enjoy a 2010 that is filled with happiness, health, and HOPE.

Friday, December 18, 2009

On my way to acceptance... slowly

The literature on grief and loss is pretty clear on what the goal of grieving is, acceptance. As I move forward in my efforts to cope with the loss of my son, I wonder if I will ever truly accept what happened. For me, reaching acceptance would involve being okay with Keller's death and being okay with how everything changed in a moment. Honestly I'm not there, in fact, I'm far from anything that even resembles acceptance.

One reason why I think that acceptance is going to be difficult for me is the fact that I can't accept what happened to Keller and I in the weeks leading up to me giving birth. Starting at about 37 weeks, my skin became extremely itchy and uncomfortable. I didn't have dry skin or anything rather, it felt like the itchiness was coming from the underside of my skin, not the topside. When I told my doctor about it, she said that it was a normal thing that happened late in pregnancy. I brought it up again in my 38 week appointment and again during my 39 week appointment. As the weeks went on, my itching got worse and worse. People did their best to help me, but nothing I did to the outside of my skin helped. I started to wonder if the itching would drive me, and those around me, crazy.

During one of my appointments, my doctor did tell me that the itching was caused by my liver working overtime. She said that it sometimes happens to women late in their pregnancies and that the only cure for it was to give birth. She said that it wouldn't hurt my baby even if it made me miserable. While it was difficult for me to understand how something that caused me so much distress wouldn't harm Keller, I took her word for it and persevered through the last weeks of my pregnancy.

By the time I woke up on Friday, August 28, I couldn't stand it any more. I called my doctor's office and the nurse told me to take Benadryl and put oatmeal lotion on my skin. I was a little confused about the Benadryl, because it is makes people sleepy and I was trying to get my body to DO something, i.e. go into labor. I did as I was told and it didn't help. I felt like my big itchy body was telling me that it was done being pregnant and it was time to move on to something else. I was disappointed in the blah response that I got from my doctor's office, but I assured myself that I would be feeling better once I got to hold Keller in my arms.

The truth is, I wasn't very itchy at all on Monday, August 31. I thought that I was finally getting some relief and I was happy. I realize now that I was relieved but also very concerned because Keller hadn't moved very much that day. I chalked it up to the busy weekend he had and thought he was sleeping. When I went into labor that night, I was excited for my pregnancy to finally come to an end. It's amazing what a roller coaster of emotions I was on during that time.

From the moment I found out that Keller didn't have a heartbeat, I believed that my cholestasis had something to do with his death. Even when he was born, with the cord around his neck, I still believed that the problem with my liver had something to do with what happened to him. Maybe he was itchy too and that was why he was so active at the end (when a lot of babies slow down). Maybe his high activity level caused him to get tangled in the cord. And maybe when he dropped, to prepare for birth, the cord got pinched. Maybe his circulation was already affected by the Benadryl I took and he didn't get enough blood or oxygen through the tangled and/or pinched cord. Who knows? But those questions have plagued me since my days in the hospital.

I will forever wonder what would have happened if my call, when I was at the end of my rope, on that Friday, was taken more seriously. I'm sure the nurse who answered my call wonders that too. Maybe if they had just had me come in to check on things they would have noticed something amiss. Maybe if I had told them that I thought my blood pressure was high, to really get their attention, they might have given more thought to inducing me early. I feel that my concerns were sloughed off, likely because I wasn't a complainer and I had been so healthy up to that point. That's no excuse and I will forever wonder why my concerns were pushed aside so easily by my medical providers.

In my preparation for another pregnancy, I have been reading several books and Internet articles on a variety of topics. In one of my books, Trying Again: A Guide to Pregnancy After Miscarriage, Stillbirth, and Infant Loss, it talks about pregnancy complications and their effects on the mother and fetus. One of the complications it lists is, "jaundice (intrahepatic cholestasis), and states that the effect is, "You may be at increased risk of experiencing either a premature delivery or a stillbirth." I was shocked when I read that, in plain English, but I tried to play it off. I thought, "maybe that isn't what I had." So I Googled it and made sure that I spelled everything the way the book had it. (Douglas, A. & Sussman, J.R., M.D., 2000)

What I found startled me. My search turned up countless websites that described the exact symptoms I had and every single one of them stated that in rare and extreme cases, cholestasis increases the risk of pregnancy complications, including stillbirth. I was shocked, angered, confused, and overwhelmed by the information in every website. What hit me hardest was the fact that my instincts were right. While I can't say that the cholestasis definitely caused Keller's death, I was right about the fact that it very likely played a part in what happened to us.

One of the best websites that I found was http://www.itchymoms.com/. This website was, and continues to be, a blessing to me. Written clearly and in lay mans terms, with medical documents for support, the website paints a clear picture of what I and many other mothers have experienced. It both comforts and saddens me that there is an entire website dedicated to people who have had similar experiences as I have. Some of the women on itchymoms.com have had successful pregnancies in spite of cholestasis. Some of their pregnancies, unfortunately, have ended like mine did.

From my research, it appears that, while cholestasis is rare, it should be better known and understood by the medical community. There are specific tests for it, which I as not offered, and medical treatments, which I was also not offered, that could have prevented Keller's death. What do I do with this information now that I have it? Where do I go from here? These are the questions that now plague my thoughts. Do I sue my doctor? Do I sit back and let it happen to someone else? Do I rant and rave and allow my anger to take over my life? I honestly don't know.

As I continue my quest for acceptance, if that is really what would be classified as successful grieving, I know that my progress will be hampered by my belief that what happened to Keller and I was not a freak accident. Rare and unexpected? Yes. Freak accident, as in could not have been predicted or prevented? No. What Keller and I went through is not, and will never be, okay with me. I will have to find some way to live with it, but I don't have to accept it.

What I do know is that I want to have another baby. And when I get pregnant again, I will be up front and honest with my doctor about my past experiences and my expectations of him or her. I will be frank about my belief that cholestasis directly impacted, if not caused, me to lose Keller. A lot of the research states that women who have had cholestasis in a pregnancy have up to a 90% chance of developing it in subsequent pregnancies. I will make sure that my next provider is aware of this and is willing to take steps to prevent me, and my next baby, from experiencing anything even resembling what I went through before.

One thing that I have learned during this whole experience is that we are all responsible for our own health care. Doctors and nurses see a lot of patients and they aren't Gods. They work with the knowledge that they have and they rely on us to know our bodies and relay that information to them. I have learned a valuable lesson, albeit a difficult one: At the end of the day, I am ultimately responsible for my health and that of my children. My instincts are good, but they only work if I listen to them.

I know that acceptance is a far off, if not impossible, goal for me to reach. Honestly, I'm okay with that. There are a lot of things that I refuse to accept but I live with them anyway. However, I am committed to moving forward and leading a life that is not ruled by anger or resentment. I have a loving husband who is committed to increasing our family and giving me the children that I want so desperately. Now that is something that I can accept.

Monday, December 7, 2009

Thankful... with tough decisions ahead.

I have to admit, I have had a rough few weeks. My emotions have been all over the place and I am having a hard time keeping up with the extremes. I continue to experience moments of intense sadness and overwhelming pain, but I also know that I might be experiencing joy and excitement in the very next moment. I'm willing to take the good with the bad because all of my emotions represent movement through grief. They are evidence that I am moving through my pain and not getting stuck in bitterness and resentment.

We survived Thanksgiving, which wasn't as difficult as I thought it would be. My parents came to the new house and prepared an awesome dinner for us. Matt and I realized that, in spite of everything that has happened over this past year, we have so much to be thankful for. Our relationship is strong, we just moved into a beautiful home, and we have the love and support of family and friends. There are a lot of blessings around us and we are sincerely grateful for each and every one.

A lot of people struggle with their emotions around the Holidays. In the mental health field, I see my clients work through a variety of emotional stresses during the Christmas season. One reason why I think people struggle so much is simple; during the Holidays, we miss people. We look around our tables, with these big delicious meals, and we notice all of the people who are not there. We miss people around the Holidays and their absence is felt with more intensity than at other times of the year.

I miss Jack most at Thanksgiving. Anyone who knows my family knows the story of the craziest Thanksgiving that we ever had and it's a good story. It was the week before Thanksgiving and Jack was an 8th grader and I was a freshman in high school. Jack and I had both been sick earlier that week and he decided that he wanted to go to school even though I wasn't better yet. My parents weren't home because my dad was having surgery in Billings so I had to drive Jack to school. I didn't scrape my windows off very well and had to drive by looking through a little stripe in the windshield. After I dropped Jack off at school, I promptly ran my car into the broad side of a big yellow school bus. Ug. It was not one of my finer achievements, but it definitely wasn't surprising given my history of clumsiness and blonde moments.

When I called my mom to tell her about my accident, she informed me that she was so sick with an infected tooth, that she was unable to take my dad to his surgery. My aunt had to take care of both of them until they were well enough to come home to Malta and take care of me. When they got home, we sat around the house in our respective misery. Jack, who was feeling fine, prepared himself a beautiful Thanksgiving dinner of spaghetti and meatballs. He sat down to his feast and said to the three of us, "I freaking hate you people! You are pathetic!" I'm sure he meant it lovingly and we really were a pathetic bunch.

After that, Jack and I vowed to make that Christmas the best one ever because Thanksgiving had been such a disaster. That Christmas Eve morning we woke up to the news that our school had burned to the ground. Let's just say that my entire family's perspective on holidays changed after that!

As this Christmas gets closer, Matt and I continue to heal. Even though I know I am making progress, I still have a hard time with the fact that my friends are having their babies. I realize why it is so hard for me to accept my friends giving birth; they are my peers and they are moving forward with life events that I should already be having. I feel like I am being left behind and they are getting to have all of the joys and challenges that I can't experience yet. I was pregnant with my peers but their pregnancies will end much differently than mine did.

In a lot of ways, I feel like one of my friends from Malta who had to repeat the 7th grade. At the end of our 7th grade year, Brian's peers prepared for high school while he stayed back in junior high with us. He didn't completely fit with us, but he no longer fit with his peers either. He was stuck in limbo for awhile until he settled in to our class and was accepted. I now have a deeper understanding of what Brian went through even though my situation is very different from his.

This "left behind" feeling is somewhat unfamiliar to me because I have always been either on target or ahead of my peers. I find that I don't have a whole lot in common with people who haven't experienced pregnancy, but I also don't have a whole lot in common with people who have living children. I'm not really in a position to talk about morning sickness and ultrasounds, but I'm not in the mood to discuss diapers or pediatricians either. I'm in my own separate place in the lifespan and that separateness hurts a lot. It's like the worst kind of exclusion because it can't be overcome even with my best effort.

As Christmas gets closer, Matt and I have some tough decisions to make. We know for a fact that we want to continue our family and give Keller siblings. The question is not if we are going to have more children, the real question is when. Biologically I could be ready any time now. I have now had two cycles and my body feels like it is back to normal. Emotionally, I am torn. Part of me is ready, with the knowledge that I will still have 40 weeks to heal if I do get pregnant. Part of me is scared and not ready because I still miss Keller with an intensity that feels like an anvil is on my chest.

I know that getting pregnant again is not going to make me miss Keller any less. I realize that nothing is going to replace my son and I could have 10 healthy babies and still feel an emptiness in my heart when I think about Keller. I also don't think that getting pregnant again will make me hurt any MORE than I do now. Healing from everything I've experienced is just going to take time. Whether I'm pregnant or not, I just have to accept that I can't rush the healing process and I can't predict the future with any certainty.

As difficult as it is for me to think about going through another pregnancy, I have to remember that I would be facing another pregnancy even if Keller had lived. Keller was never meant to be an only child and Matt and I have always wanted several children in our family. Granted, we had hoped for a year or two between Keller and our next child, but we really have no set schedule for our children. We are willing to accept what the future holds for us and our family.

I sincerely hope that Matt and I are able to continue our family in 2010 and that my next pregnancy is a time of healing and hope. We definitely have a tough road ahead of us and there are no easy answers to the decisions that we have to make. I honestly believe that we are up to the challenge because we have a lot of blessings to take with us on our journey; our commitment to each other, our faith in God, and the support of wonderful people. The future definitely looks difficult... but worth it.