I have spent a fair share of time on bereaved and grieving parent's blogs. And I am the first to admit that they are a miserable place to visit. Of course, it's not their fault. For anyone who has lost a child, it can be an all-consuming and sad place to be, and it can be very difficult to pull yourself out of that hole and start to live again. I don't feel the need to share every little thing about my experience with others, nor do I feel that I am in that "hole," but I do understand that people are concerned about me and want to know how I am doing so I will try to explain a little by sharing a few of my thoughts.
1) Most people and books will tell you that there are steps to grieving, such as anger, denial, acceptance, etc. And that is true. I remember going through them all with Evan. But this time I am grateful that I can skip most of these steps. Some of the hardest things about losing a loved one are the angry and confused questions of "Why me?" "Why MY son?" "Why do bad things happen to good people?" "Why would God do this to me?" My advice would be to not spend much time in this painful stage of grief. "Luckily" I already know that. I don't believe I am being punished, or that I am necessarily being tested. I am just a person having my family with some very difficult experiences, and I am just trying to live my life the best I can. Hopefully, most people will not have to share my experience, but every person has their trials. And if I could just share a bit of wisdom that I have learned, don't ever, ever, waste your time and energy on these questions. There are other ways of love and gratitude that you can spend that time and energy.
2) When Maddie was sick we colored a lot and she loves it when I draw pictures of our family. I drew this for her and realized that my family drawings are going to look even more weird in a year.
This is a difficult thing for me, and probably a side effect that most people wouldn't expect or understand. I cannot tell you how many people EVERY day, EVERYwhere I go, ask me about my pregnancy. Store clerks, people at Maddie's school, parents at the park, people at church, etc. They are smiling and excited and always ask questions like "When are you due?" "How are you feeling/How has your pregnancy been so far?" "Is this your first?" "Is it a boy or girl?" "You must be so happy to have a girl and boy, because you can be done!" "Boys have so much energy!"
Now, these people are very sweet and obviously they have no idea, but it makes me very uncomfortable. I remember when Evan died I just wanted to tell everyone that I was a mother and that I had a son. But it is much more complicated than that. I very quickly realized that I was going to have to lie. So I would say, "No, no kids yet." And then when I was pregnant with Maddie, "Yup, this is my first!" Or when Maddie was little, I would get a lot of questions about when I was going to have more and that I "don't want an only child." With this pregnancy, I am having to fake smile and answer their questions as best as I can with lots of lies like, "This is my second child. Yeah, I am so happy. This pregnancy has been easy on me. I hear that boys are a handful."
Because even I understand that a perfect stranger checking out my groceries who is trying to be chatty and nice does not want to hear, "No, actually my first born son passed away from a genetic muscular disorder, and then I was lucky to have a healthy daughter, and then we had three failed in-vitro attempts, but finally got pregnant again, although this boy will have the same terminal disorder as my first son."
And in a year or so, when people ask me if Maddie is my only child, I will say "yes" because nobody wants to hear the truth of my sad and weird mothering experience. Because for the people who I feel should know, to whom I have had to explain my situation (family, Maddie's preschool teacher, Relief Society president, friends, etc.), it makes it very uncomfortable. And yes, I have burst into tears a few times and felt horrible for it because of the look on these people's faces. Nobody knows what to say to that, and I don't expect them to. So, as you can imagine, I am trying to lay low and avoid conversations. It is difficult enough to get through this pregnancy (I recently had a very tearful trip to Babies R Us to get some things I think/hope I might need) without having to lie about my children. Although I have the fake smile down pretty good, it still feels like it chips away at my soul a little bit every time I lie.
3) I won't speak for Josh, but people have asked about him as well. Josh is an incredible person. He has a spiritual and compassionate side to him that makes him a perfect father-candidate for our sweet little sons. He is the one, who, from the beginning said that he will hold his boys through their physical pain and struggle because that is what fathers do. He is determined to make sure his boys know that they had a father who loved them and helped them through their trials. He feels that his dad did that for him while growing up, and that he will do it for his sons too. He is a very constant source of comfort for me and I am so grateful that he has the ability to take one day at a time and always see his family as an eternal entity.
4) Maddie. Wow. This is a struggle. When I told her that her brother was going to be sick when he was born, and that he will get to live with us for a little while but then he will have to go to heaven and live with Evan, she immediately understood. My little girl has a very old soul and feels empathy for others. She teared up immediately and said, "But he is just a baby! I just want to be his big sister!" She has a very hard time understanding this from a four year old perspective. She often asks whether she will ever have a brother or sister that will not have to live in heaven. When she makes wishes, it is always that her baby brother will not be sick and die. When she was really sick a few weeks ago, she looked up at me with sad eyes and said, "Does this mean that I am going to die and go to heaven with my brothers?" My heart was sick and I assured her, begged her, that no, she will get better and live to be really, really old. She said, "Like Poppy?" :o) Unfortunately death is a part of her life at a very young age, but so far there is no black eyeliner, hair dye, or wardrobe in sight. Instead, she just has a very compassionate heart and will always have two brothers who will watch over her. And she has an uncommon amount of questions about heaven - which is why I needed to explain things to her preschool teacher. (And for a little comic relief, when I explained to her that the baby will die because he is very, very sick, she solemnly replied, "I hope he doesn't sneeze on me.")
5) I had a conversation recently with one of my friends, whom you could describe as "balsy." She asked the questions that I know everyone is wondering. So for those of you who may not have the balls to ask, here are some of the FAQs: (My mom is going to kill me for saying "balls" on my blog!)
a) The disorder is called Spinal Muscular Atrophy. There are different types, ranging in severity. Obviously, we have the most severe form, Type 1. We also may have a mutated version because Evan only lived five weeks when the average is more like 6-8 months. We are told that in most cases, siblings inherit the same severity.
b) In layman's terms, SMA takes away the ability for the body to produce a certain protein that the body needs to reproduce their muscle. All of us have cells that are dying and shedding every day and are being replaced. People with SMA can not replace their muscle cells, so eventually they get weaker and weaker. They first lose the ability to move their body, then they become too weak to swallow/eat/cough, and eventually they become too weak to breathe. For some reason, it usually does not affect their facial expression muscles, so in pictures they look perfectly normal. (See adorable pictures of Evan to the right.)
c) Josh and I are both recessive gene carriers of the SMA gene. Therefore, neither of us are affected, but together we have a 1 in 4 chance of having an affected child. Obviously, that doesn't mean that if we have four kids, only one will be affected. Each individual child has a 1/4 chance.
d) There are no cures for SMA. There are some trial drugs being tested to help prolong the onset of symptoms, but they are mostly for children who are not as severely affected as our boys.
I hope that kind of helps explain things a little better and answers some questions you may have had.
6) Many people have told me that I am strong, but I assure you, I am merely human. I am no different than any other mother who feels so very deeply for her children. I have my moments, and sometimes longer than that. But honestly, I am surprised at my strength so far. I am amazed that somehow I am still able to enjoy my life. I am still able to feel my baby moving in my stomach and feel complete joy at being his mother. I am able to enjoy a romantic dinner with my husband. I am able to laugh at least once a day at my witty daughter's humor.
I know better than to pray for a miracle, or to have this trial taken away from me, but I am telling you I feel strength coming from somewhere outside of myself everyday. I believe people when they say they are praying for me or thinking of me because I can feel it. I can't tell you how grateful I am for that. I believe in the power of prayer, and I believe that there is a spirit of comfort and strength in my home and surrounding my family. I am very, very grateful that my little family is made of people who are just trying to be good, because there are blessings pouring over us everyday. I just wanted to share that.
