Monday, May 25, 2015

Sweet Sorrow...

It's been a long time since my last post, maybe too long. I guess it's because I felt as if I didn't really have much to write about. Most of this blog was about Maia, and since she passed away, it felt almost awkward to fill up that space with anything other than her. But I realize now that this journey is not just about Maia, it's about ALL of us.

The last couple of years have been filled with life-changing events. We see the world now with such a different vision than we used to. What we used to view as problems are now little life experiences we try and learn from. We are more driven and determined to "live life to the fullest." And when I say "we" I of course mean Gordon and I. Our views on life have always been similar, and through it all, I think they've become even more similar. Life's big picture seems clearer now when it comes to figuring out what's important to us. It's almost difficult for us to relate to others when people talk and complain about small petty things. We are so much more appreciative of everything in life, including both the little things as well as the big things. It's hard to explain yet I could go on and on to try and give you more details!

For Gordon, Marcus and I, we're focused on living our new, normal life. It's certainly not the life we expected but life never really happens that way! Gordon is working again, and has been for a few months now. It's not the dream job, but it's a job for right now. He's fortunate to have a kind and empathetic boss, who understands his need for a break when times get overwhelming, and at this stage of our grief, it can be very unpredictable. Gordon had to take a month off of work during the holidays, so we are grateful and appreciative for the understanding and support. Some of us have jobs that pay the bills and although we might be good or even great at it, we are not passionate about it. That's how Gordon feels at times, so I tell him not to stress about it. At the end of the day, work stress is unnecessary and not worth it... money isn't everything and when you have too much it may create more problems than it can solve! 

I have also returned to work, part-time. I was worried about how Marcus would feel when this happened, but my hours are during his school time so it works out nicely. I've been ready to work for a while now, so it's nice to get out of the house and do something!

Grieving has been both an individual and a family process. We've all been dealing with it differently. Gordon gets very emotional when he sees pics and videos of Maia. He also sees both Maia and Marissa in almost every little girl, and can't help but wonder what they would be like if they were here with us today. I on the other hand, don't get affected too much when I see little girls. It makes me miss both Maia and Marissa, but I don't really get sad. I mostly wonder what would they be like today. I also love looking at pictures, there are so many we have of Maia (thank goodness). It took her a couple of months but I think she quickly got used to having either a phone, iPad, or camera in her face all the time. Plus, she would let you know if she was in the mood for a picture or not! With today's technology and photo apps, I could spend hours making "new" pics of Maia! 

I added a Warrior hat to this pic!

But I noticed that watching her videos are more difficult for me. I think it's because she's so alive in all of them. When we went through all of Maia's things, it was bittersweet to donate them to those in need. Many of her clothes were still new and and had tags on them, and we could only imagine what she would've looked like in them. Even after we had given away almost all of Maia's belongings, there were little things around the house that brought back memories. It took me 7 months to throw away her formula and protein powder that we had. Yes, she had protein powder! I still laugh at the thought of adding protein powder to her formula! We were hoping to build some muscle tone on our lil roly poly! It sat atop our dresser where we had kept all of her feeding and g-tube supplies. It was silly to keep it around but I couldn't seem to throw it away. It sat there and collected dust. I realized it was the last bit of evidence in our bedroom that Maia was here with us, that she had made it home despite everything. I was finally able to throw it out (it was expired) sometime after New Year's. I also realized that her memories affect me more when I'm alone. When I'm with other people and Maia's name comes up, I'm more than happy to talk about her. Sometimes I feel like I talk about her too much! But when I'm by myself, like in the car, that's when I'll hear a song that reminds me of her and thoughts start running through my mind.
Before I started writing this post, I decided to read the last one I wrote. It was from back in September, a few days after Maia passed away. As I started reading, memories came flooding back to that day, that moment. I never realized how detailed my posts were! Every detail is included and it seems I left nothing out. Although everything seemed so chaotic during that time, I remembered everything. Nothing was a blur. I don't think I left her room that morning, not even for a bathroom break. It was one of those moments that I didn't want to forget, and Maia taught us well about living for the moment. So the flashbacks happened... one right after the other, which resulted in tears coming down my face... one right after the other. Most of the time though, I end up with a smile on my face whenever thoughts of Maia cross my mind... how could I not?!!

It's such a weird thing to explain, but I'm happy. I really am. At times I do feel guilty since we're missing 2 little girls that could've been running around with Marcus, enjoying our life experiences as one big happy family. But I know that's not possible. Our 2 little angels are with us in spirit, they're still experiencing our ups and downs with us. It's because of them that I try to enjoy life even more now, and continue to prioritize the important things in life, like God and family. When I hear or see people complain about things that I feel shouldn't be of any importance, it used to irritate me. But I realize that some people just don't see things the way I do. When I hear complaints about jobs and money, I sometimes want to point out how grateful they should be to have a job that pays well! My experiences make me see things differently. I continue to choose to see the positive and not dwell on the negative. If I'm going to complain about something, then something needs to change, either my attitude about the situation or change the situation itself (if I can). Otherwise there's really no point in complaining. I still run into people that assume and expect us to be stuck in some sort of forever sadness. They have a sad face and tell me "I'm sorry" and I don't know what to say. My usual response is that we're doing good (because we are) but we do have our difficult moments, and we always will. I will forever wonder what Marissa and Maia would've been like as toddlers, as little girls... how they would've looked... what heaven is like for them... they're very close in age, less than 15 months apart, so I wonder if they're the same size... what Marissa looks like "average" height (she had TD, a lethal form of dwarfism)... if Maia still has her scars... these are just some thoughts that go in and out of my head. It doesn't necessarily make me feel sad, it just makes me daydream as I smile and imagine what could've been.

We have also been trying very hard to live a healthier lifestyle. Marcus seems to be naturally athletic with lots of energy. For Gordon and I, it's been taking a lot more hard work, time and effort, but we know it's a process! We don't eat bad, but we could always make healthier choices. To be more active, I've started running again... I've signed up for a couple of half marathons at the end of this year. For now I'm sticking to 5Ks and 10Ks before I make that jump to longer runs. But its been a nice stress reliever and a time I can have to myself to think, focus, and relax. Plus, it's always nice to get together with the best running buddies a girl could ask for! With all our busy lives, it's rare that we get to see each other regularly, but for some reason running always seems to bring us together, and keep us together!

Marcus has been on his own personal journey since Maia passed away. It probably started when Marissa passed away. He's loved being an only child, but when the time came to tell him he'd be a big brother (twice), he went on a mission to become the best big brother ever! He preferred having a sister so when we found out the gender, both times he was more than excited. But when Maia passed away, Marcus lost his excitement and his passion for almost everything. I was first hesitant to share Marcus' experience, but if it helps anyone else out there, then it's all worth it...

When Maia passed away it was Marcus' first week of school, and he had just started first grade. We were unsure how this would affect him so we explained to his new teacher what was going on and to let us know if anything seems out of the ordinary. Fortunately, school has been one of the few constant things in his life. He always looked forward to it and has always been interested in learning and reading. Life outside of school was dramatically different. When the holidays started to roll around, starting with Halloween, we started noticing that Marcus had a tendency to get extremely angry, and very quickly. It was explosive with no gradual build up. It also seemed to happen whenever there was a get together, like a party or birthday. Then it also started happening at home, and it was always something over so petty and random, that he normally wouldn't react to. He also seemed to categorize everything into 2 groups, fun and not fun. The only things in the fun category was iPad time and Lego time. Everything else he considered not fun, which was literally everything else, from taking a shower and doing chores, to Taekwondo and reading.  As a result, he ended up punished for not doing what he was supposed to do and/or his explosive tantrums. We would sometimes not allow him to attend parties or go on lil planned adventures to the park. But even as his behavior started to change for the worse, we've always kept good communication with Marcus when it came to talking about feelings, especially about Maia. He's always been very open about his feelings and continues to keep her in his prayers every night.

As Christmas and New Year's approached, more parties were marked on the calendar. Our family and friends have been in baby season for the past 2 years now, so there's always a shower, baptism or birthday planned every few weeks! At one of the parties, there was some ornament making for the kids. Marcus was enjoying himself until the lady that was helping him and holding up his ornament accidentally dropped it. Marcus threw a fit and kicked an empty chair to let out his aggression. Needless to say, we took him outside to calm down, apologized, and left the party early. A few weeks later the same thing happened. This time Marcus and his little cousins were running around in a restaurant. He didn't listen when we told him to stop because all the little ones would be copying him. A few minutes later, he ran around a blind corner and crashed into his 2-year old cousin. Even though it was an accident, this infuriated Marcus and he shoved his little cousin to the ground. So again, he was punished and we left the party early. This was the first time we've seen him take out his frustration and aggression on someone. It had now escalated from kicking a chair to something more serious.

Before he went to bed that night, I sat with him as he said his prayers. After, he talked about how life wasn't fun anymore, and how he hated that he was always in trouble. He then said something I'll never forget as long as I live.... "I wish I could die and be with Maia!" I sat silently for several seconds and then tried to change the focus of our talk and asked him what he meant by life wasn't "fun" anymore. I asked him what he considered "fun." I honestly don't remember what he said because I was still stuck on the "I wish I could die..." part. I wasn't sure if he really understood what he had said or if he knew the meaning of those words. I didn't want to show him how freaked out I was so we continued to talk about the different ways to have fun and how everyone's definition of fun was different. After that I said goodnight and headed straight for Gordon!

Gordon and I decided it was time to get some professional help. We both felt that although we were doing our best with Marcus, this was beyond our knowledge of parenting. We might cause more harm than good if we tried to work this one out ourselves. So I talked to Marcus' pediatrician who referred us to a child psychiatrist/psychologist. We talked to Marcus about going to a Dr. to talk about his feelings. He calls her the "talking Dr." During these appointments, she first talked to us as a family, then separately with Marcus by himself. She said that Marcus is grieving and is depressed, which is why almost everything is not fun for him right now, even things he used to love doing. Marcus had divided everything up into two categories, FUN and NOT FUN, and there was nothing in the FUN category except Lego time and iPad time or any type of playtime. She also mentioned that children grieve differently from adults. For some reason, feelings of grief for kids always come out through anger, even if they're sad it will be expressed through anger. We can't not let him express his grief, so we have to help him control his anger and learn other ways to deal with his feelings. She also said that giving him more structure in his daily routine would help. This we knew was going to be a problem since a chore chart was suggested. We've never had to have one because Marcus was really good about doing things on his own. But now that he was refusing to do almost everything, we thought we'd give it a try. We also asked the Dr. about any suicidal feelings, which is what led us to see her in the first place. She said she didn't feel he was suicidal, just depressed. Also, instead of punishing him we should try positive reinforcement and reward him for doing good things. If he's able to clean his room or do homework without complaining, he can get more iPad time. The good thing is, what he's going through is considered normal, it's just the way children grieve.

A funny lil side note: After Marcus' first appointment with the "talking Dr." he asked us if we were paying her. We told him yes and he said "well you're wasting your money cuz I already know that stuff she's talking about!" Such a sarcastic smart a$$! I wonder where he gets it from?!! Ha ha! Anyway, so we told him that if he already knew everything she was talking about, then he needs to just do it (chores, etc.)... do what's right and do what he's supposed to do.

The holidays were tough as it seemed like nothing was working. Everyday was a struggle and everything was a battle. Nothing was fun and he still didn't want to do anything. A lot of what the Dr. suggested made sense but we didn't end up following through on all of it. We still disciplined and punished him, but not as much, as we tried our best with using positive reinforcement. We also didn't end up using a chore chart, we were just on him more about what was expected out of him, and we didn't let him get away with disobeying us or others.... but it was very hard, and it still is sometimes. The Dr. had also mentioned to try and anticipate his feelings and behavior in regards to certain activities and events. If we felt that a birthday party might be too much for him and stir up some emotions, we could choose not to go. However, I didn't feel this was the right approach. Avoiding parties or certain situations wasn't going to help. We can't always avoid things thinking it will help protect Marcus, I felt that it would isolate him. We're not the most social family, but we enjoy both our time alone and our time with family and friends. One thing that has helped is the support and cooperation from everybody. Letting everyone know the details of what Marcus is going through isn't exactly a topic we love bringing up to others, but letting friends and family know has been a positive experience.

The Dr. also suggested joining a local support group. Since Marcus isn't considered a serious case, he would only be able to see the "talking Dr." about every other month. A support group could offer him different kinds of support from art therapy to group therapy. So we went to KARA, a local grief support group in Palo Alto, and had our initial meeting with one of their counselors. They had just started a monthly group specifically for grieving siblings where members ranged from age 8 to 16. Marcus wasn't ready for this group and didn't want to do it, so we didn't force him. After I gave the counselor some background about us, she took Marcus into the room next door and talked to him as I filled out some forms. She gave Marcus a paper with a body diagram and a list of feelings. She told him to designate a color for each feeling and color that part of the body. As he did this they started talking about Maia and she asked him how he felt about Maia dying. Marcus then went into full details about the day of Maia's 1st birthday party at the hospital. He said he was happy everyone was there... family, friends, Drs, nurses, therapists, pharmacists. You name them, they were there and they all knew him. Then he said after everyone left and we were all in Maia's room together, he heard Dr. Sarah announce what was going to happen... How Maia would be placed in my arms and everyone that wanted to could take turns saying their goodbyes. Marcus said this made him very upset. He knew that we were planning to say goodbye to Maia, to let her rest so she wouldn't suffer and be in pain anymore. He knew Maia was getting worse and not better, but he hated that the Drs were "giving up." In his words, Drs. are supposed to help you get better, not help you die. The more I heard him talk, it brought tears to my eyes. Like I mentioned before, he's been very good at telling us his feelings, but I've never heard him talk about that moment, the day Maia passed away. He said he still had hope that the Drs. could help Maia until Dr. Sarah made that announcement. Then he knew for sure that Maia was going to die... and he didn't want to be there. He went on to describe the colors and feelings in his diagram... red was sadness which he colored the tips of his fingers with because that's what he used to touch Maia's belly (right side). It was the only place that didn't have any scars. He went into detail about so many feelings and even added his own to the list. The color blue was for the feeling of missing Maia, which he colored the eyes with and connected a line to the heart because he missed her and now he can only look at pictures of her. He explained everything so clearly I was so impressed the way he talked to this counselor! I was actually excited to tell Gordon about this meeting! One reason he talks more freely and openly to someone he doesn't really know is because he knows that person has no attachment to Maia. One of our good friends said that when Marcus talks to us, he might be choosing his words carefully. He knows we're hurting just like he is and he doesn't want to cause any more pain or feelings of sadness. So despite the good communication between us and Marcus, he may get protective over us and not tell us everything he's feeling.

They seem to have that same look in their eyes!

It's been a few months since our meeting with the "talking Dr." and also the counselor from the Kara support group, but Marcus is slowly returning to his old self again. He's starting to enjoy the things he loves, including Taekwondo, baseball, reading, and drawing. One thing that he's never lost is his curiosity!

He's always had a thirst for knowledge, and now more than ever he's curious about the life of angels... especially the lives of his 2 sisters. We always remind him that they're his guardian angels, and they watch over him. After getting him a new desk, we found this post-it note that was left for his sisters. It simply read "Hi Marissa and Maia, I'm right here (arrows pointing to his bed) are you with me?" Along with a pencil for them to use, he then drew some empty bubble circles for them to fill out, one for YES and another for NO. It was both cute and sad. 

As everyone else's family grows, Marcus is enjoying his time with the many new additions that surround him! Although he admits that it sometimes makes him sad to be around other baby girls, it also makes him happy because he says they are so cute and he can't stay away. So we tell him that it's not only his responsibility to be a good big brother to his angel sisters, it's also his responsibility to be a good big cousin to all the little ones running around that love to copy him and be around him. 

Marcus & Harper
Marcus & Harper
Marcus & McKenzie
Marcus & Macie

Marcus teaching Macie to arm

He's a growing boy with a heart of gold. Of course he's also a typical 7 year old boy, so sometimes it's difficult to determine if some of his anger issues are part of his grieving, or if it's just normal growing pains. Either way, we're all learning to deal with it. We're all learning to live our new normal life, enjoying ourselves and always looking forward to each new adventure that comes our way!

Thank you all again for keeping our family in your thoughts and prayers. Your love and support continue to inspire us every day. God bless.